Miss Diagnosis

Still Learning

2010-11-10T08:11:00.000-08:00

Before I even get started with a new topic, I need to say YAY! The those who haven't already heard the MRI was fine. "No definite tumor".

Anyway, when we started with the new endo she suggested we increase Alex's dose of hydro. Dr. F. had suggested this as well. It's funny how resistant we are and how hard we fight against excess steroids after living with Cushing's. We have been vigilant about trying to reduce Alex's dose to the absolute minimum amount she could function on in hopes of further weight loss.

Sometimes it takes an outside perspective I suppose. Retrospectively, I should have seen it. Headaches daily, terrible fatigue, nausea...and it didn't dawn on me that this was all caused by not enough hydro? Add to that the labs and the fact that it was so incredible hard to wean? Needing extra hydro a couple times a week just to keep from puking? Oh, and two crisis siuations in a 5 month period?

So, over a month ago we increased the hydro from 15mg daily to 20mg daily. Guess what? She feels better! And, surprisingly, she hasn't been gaining weight of showing any other "Cushie symptoms". In fact, she has lost another couple pounds.

Like I said, still learning!

I Don't Want To Think About It

2010-10-25T07:33:00.000-07:00

Nelson's syndrome. Aside from rest tissue it's BLAer's biggest worry.

For the first year post BLA Alex's ACTH levels stayed under 100. They are expected to be high due to the negative feedback, and 100 is a perfectly normal level for a BLAer (though not for a normal person). Over the past several months those numbers jumped into the 350-550 range. Alone those numbers are still acceptable, but her skin has started darkening as well. That makes two out of the three signs, so Friday she had an MRI to look for the third and final symptom. I don't know how soon we will hear back with results, but if the tumor is growing it will mean another pituitary surgery and possibly radiation as well. The daily headaches are back, so we are definitely concerned.

The New Endocrinologist

2010-09-30T15:02:00.000-07:00

After the fiasco reported in my previous post I've searched out a new endocrinologist. I've asked around and slogged through every local endocrinologist's web site trying to find someone I thought would be receptive. Today was the big day...we met with Dr. Lee at UC Davis.

We first met with her "helper" (intern?) and he actually spent about 45 minutes in the room with us going over heaps of old paperwork, attempting to assemble the puzzle that is Alex. Once he was done he consulted with Dr. Lee and then the two of them came in together and spent an additional 20 minutes.

Both Alex and I liked the doctor and felt she was competent. She asked the right questions and didn't say anything that was cause for concern. I guess we won't really know how good she is until we hit a snag, and see how she reacts. She suggested Alex increase her hydro dosing. We have been reluctant to go this route, but have to admit Dr. F said the same thing. With ACTH in the 300-400 range, and Alex feeling tired all the time, coupled with a need for extra hydro several times a week I think it's a valid option to try. We are going to give it a shot and hope the weight doesn't start piling on. She is okay with Alex's fludro dosing, and agrees that when fall weather actually gets here( it's 100 degrees today) we will likely need to reduce. She's running thyroid labs, but thinks Alex is likely at the top dose necessary. She's running all the sex hormones as well, so that may get us somewhere.

All in all it went well, but only time will tell.

Thrown Under the Bus~Okay, Not Literally

2010-08-07T12:18:00.000-07:00

I'm still so enraged I don't know if I can write down what I'm feeling, but I'm going to give it a shot.

This past week has been a series of "AI (adrenal insufficiency) events". Starting with Tuesday: Alex woke up vomiting. We gave an injection of 100mg solu-cortef, but chose not to go to the ER (though Dr. F. tells us this is the proper course of action). Going to the ER in the past hasn't worked out well and it's something we'd like to avoid if at all possible. Over the next few days Alex was unable to eat more than a few bites but she was keeping down some fluids. We continued "stress dosing" when she felt she needed additional hydrocortisone. I just want to add here for my "non-Cushie" readers: without adrenals your body has no means of balancing fluids and minerals on it's own. Vomiting and diarrhea can be life threatening.

Moving on to Thursday night: Alex took an extra dose of hydro before bed but woke up at 2:00AM feeling awful; whole body shakes, diarrhea, extreme nausea. We opted to do another injection of solu-cortef. An hour later she wasn't feeling much improved so we decided it was time for a trip to the ER. They actually did a great job in the ER. They followed Dr F's emergency letter to a T: they gave fluids, solu-cortef, Zofran for nausea and Ativan for anxiety. It was about 5:00am by the time they gave her the meds and she fell asleep for a while after. They also called Alex's pediatrician. Another Dr. was on call but forwarded the message and the wonderful Dr. Leong was in the ER to see Alex at 8:00am.

Alex's heart rate had dropped from her normal 80-90 down to the low 50's. In the past this has been a marker for low potassium for Alex so Dr. Leong ordered a few rounds of potassium and solu-cortef if needed. Alex felt she still needed more solu-cortef so they ran another round of 100mg. Because they weren't seeing much improvement, and because of the the low heart rate they decided to admit. They put us in a nice private room upstairs and Alex was feeling pretty normal. Dr. Leong came by on her lunch break to order more labs, see how the EKG looked and check in with us. At that point she said the EKG was showing A-fib, and thought we would be better served in Sacramento where they could put her in a peds ICU for closer monitoring. She also said that we would have a staff doctor there at all times and that Alex's local peds endo would be able to care for her in conjunction with the doc on the floor.Before leaving Roseville Alex was given another 50mg of solu-cortef with Dr. Leong ordering 50mg every 4 hours or 100mg every 6 hours if needed.

So, here's where the wheels came off the bus. We arrived in Sac with the belief that Alex would be on a continued regime of weaning, or more if necessitated. Wrong! The floor doctor said we needed to wait until Alex's endo arrived. By this time Alex is completely flipped out. She is crying and truly believes she is going to die. Finally her endo arrives and tells us "she is not in crisis; she does not need any more steroids". I just thought she was freaked out before. A few more of his comments if you will? "a patient can not tell if they need steroids"~ "steroids are bad for you, you need to quit taking these"~ "have you seen a therapist? this level of anxiety is not normal"~ "you are fine; nothing is wrong with you; the labs say you are fine; quit crying". We were both nearly speechless. Where did this all come from? This endo was one of the many who failed to diagnose Alex. On the other hand we were giving him a second chance because he was willing to help us when we were testing with Dr.F. We are angry (livid?), sad, and betrayed. Did he have us come to "his hospital" so he could belittle us?

We spoke again with the intensivist on the floor. She said she was deferring all endocrine treatment to him. Now what? Knowing there would be no more steroids what are we supposed to do? We pondered it for a while and did a lot of agonizing (on my part) and crying (on Alex's part). The final decision? Ummm....cheat. Against medical advice I slipped her 40mg of hydro from the stash in my purse. I figured it would be at least enough to hold her till they could get some more fluids in. Brian had a friend follow him to the hospital so that they could leave a car there for our escape. While Brian was there I asked the nurse "So, how bad is everyone going to freak out if we say we are leaving?" She was very sweet and said she would let the doc know and that it wouldn't be a problem. The doc came in and talked to us and said she didn't have a problem with us leaving, just watch the fluids and try to get Alex eating some. She even volunteered a bolus of fluid before we left. Brian left for home at that point and we accepted the offer of fluids pushed over an hour. Of course by the time the fluids were done Alex was gonzo asleep. Around 11:00 we were on the road for home.

The 40mg I gave her at 6:00 held her for the night and this morning I gave her 20mg instead of her regular 11.25. We can only hope that whatever caused the onset of all this has abated. If not I don't know what our next step will be. By the way? We won't be seeing that endo again. Ever.

survive the journey: The Retrospective: Part IV (a guest post)

2010-07-23T07:40:00.000-07:00

survive the journey: The Retrospective: Part IV (a guest post)

Please read the recent "guest"series on Robin's blog if you haven't already!

Pictures As Promised

2010-07-19T08:30:00.000-07:00

These are "the official one year post op photos".

It's Been One Year Today!

2010-07-16T13:24:00.000-07:00

Today is the one year anniversary of Alex's BLA. We have no regrets, but it has been a very slow recovery. All things considered she is so much healthier now than she has been in years.

Current meds are:
Hydro~ 11.25mg @ 7:00am and 3.75mg @1:00pm
Fludro~ 1 pill @ 7:00am 1/2 at 1:00pm and 1/2 @ 5:00pm
Thermotabs~ 2 pills daily (to replace sodium in the heat)
Vyvance~ 30mg daily (for ADHD)
Levoxyl~ 75mcg daily
Nexium~ 40mg daily
Ironsorbs~ daily
Vitamin D~ once weekly

Adding the Vyvance and the Levoxyl have made an incredible difference. Alex's energy level is so much better now. She is up at 8:00am nearly every day. It may not sound like much but she now does her hair and makeup daily, wears clothes (not jammies) daily and leaves the house to do stuff every day. She is able to do several things in a single day, and she doesn't need a full day to recover if she leaves the house.

She has come so far. It used to be that she spent most days in bed. I had to force her to shower. She was in pain and crying several times a week. She told me several times that she just wanted to die. I would check on her when she was sleeping to see if she was still alive. We had to plan everything around her health.

The stretch marks are gone, the hump is nearly gone, the acne is gone. The headaches are infrequent, the GERD is still a problem but Nexium works, the other GI stuff is under control. She is no longer insulin resistant and her cholesterol is in normal range without meds. The Levoxyl has nearly normalized her periods; we are no longer considering uterine ablation. Weight loss has been slow, 35 pounds to date, but it does seem to be coming off again.

The most remarkable thing is that we are now leading a pretty normal life. It isn't just focused on Cushing's. I still foresee continued improvement. It doesn't seem to have stalled out. If this were "it" it would have still have been worth it without regrets. But, I think the future holds more positve changes to come.

School

2010-06-17T06:10:00.000-07:00

The school year ended 3 weeks ago and Alex and I met with her counselor and signed up for next year's classes. This August Alex should be starting her senior year. The thing is she only has credits equal to 2 years completed. We had really hoped she would be able to catch up this past year but the reality has been different.

Options include taking the state proficiency exam (they don't offer a GED 'till you are at least 18), trying to cram two years of work into one, or planning on taking an extra year of H.S. Alex plans on going to college so she has decided she would rather plan on an taking two senior years. This will give her more of an education under her belt so that college won't be so intimidating. Her counselor is fine with this option as long as Alex is making "good progress" this coming year.

I think it's the best option, but it's going to be really hard when her friends are graduating and leaving home and she is going back for another year. I guess this means we will be skipping senior pictures, and all the other "senior stuff" for another year. It may be the best option, but it still makes me so sad for her.

It's Been A While

2010-06-15T10:56:00.000-07:00

Time flies! Improvements are so slow it seems like nothing changes. On the other hand when I look back things are still continually changing. So, lets see...

Alex's weight loss seems to be stalled at the 25-30 pound mark. She is still working on it but as soon as she loses a few pounds she gains them back a week later. She really no longer has any of the "Cushie" symptoms. At this point it's more about getting her body back to a normal state and adjusting meds, still.

Hydro dose is still the same, though we have had to switch up the timing a bit to avoid headaches every afternoon. Along with 2 fludro a day she is taking 2 salt pills. They seem to help as much as the fludro with keeping her fluid and electrolytes balanced. One week ago we increased the Levoxyl to 75mcg. The Levoxyl has been a really good thing. It has helped with energy levels and helped with the menses. We are hoping the increase of dosage will cause further improvements. The Vyvance isn't working as well as it was so she will start this week on an increased does (30mg) of that as well.

We were talking this weekend about how the changes really do sneak up on you. We were out running errands for several hours and didn't have to slow down or give up and come home. A year ago if we made it through Costco and back home she would have been done for the day.

I'll make sure and post next month when she reaches the one year mark. Hopefully with a picture of the changes!

Lots of Things

2010-04-06T09:38:00.000-07:00

I don't know why I haven't been blogging I actually have quite a bit to say.

The latest news: Alex no longer has high cholesterol or pre-diabetes (insulin resistance). The latest labs are well within range with no medications to help out. Current weight loss is at 25 lbs.

GYN news: Dr. Warner is unable to regulate Alex's cycles with progesterone and thinks a uterine ablation is the answer. Alex and I were both totally on board with the idea till I asked some of my Cushie friends. They have made me re-think and we are going to try more alternatives first. This week Alex will be seeing my GYN for a second opinion. Alex is certain that she does not, and will never want, to bear children of her own. With pituitary damage it will be hard to get pregnant, with no adrenals it would be tricky to sustain a pregnancy, but for her, first and foremost, is that she doesn't want the posssibility of passing on the disease to a child. We both feel adoption will be a better alternative when the time comes. My Cushie friends have advised that it's awfully early to close the door on fertility.

Endo news: Today Alex starts on Levoxyl 50mcg. We persuaded the local endo to do a trial run on thyroid meds. Her numbers are within range but low. We are hoping this is the key to further weight loss, increased energy and regulation of menses.

ADHD news: Alex has been on Vyvance for about a month and a half. It gives her a bit more energy and does help her to focus some. She thinks it makes her feel a bit "flat". I tend to like her a bit "flatter" than usual. I see a huge difference in her ability to have a coversation without being all over the place.

Other news: We got Alex an '02 Honda Accord last week. I got a really good deal through an ad on Craig's List. Our deal has been that the kids have to pay for half of their first car. She will be making monthly payments to us for her half. I think I'm as excited as she is. It is really nice for her to be able to do things on her own.

The ER~ Round Two

2010-03-03T07:21:00.000-08:00

Over the weekend things improved very little. Alex needed 100-150mg of hydro a day to keep her out of A.I. Through all of this we have been keeping an eye on her pulse and B/P. Since the BLA we have found the balance of meds is easier to determine based on her numbers. Early Saturday afternoon we noticed her pulse was quite low, without a change to B/P. By Saturday evening I paged Dr. F. because pulse was in the 40-50 range (it's usually 80-100 for her). We kept an eye on her for several hours and never got a call back from Dr. F. I spoke with a couple other BLA ers who advised we go to the ER, but admitted they probably wouldn't if it were them. The low pulse stayed all of Sunday as well and was at 42 when I woke her on Monday for meds. I called the pediatrician and spoke with her when she called back. We decided the best bet would be the ER to get things done quickly. Dr. Leong call ahead and spoke with the ER doc.

They did get us past triage quite quickly and got labs and an EKG going. The EKG showed the bradycardia but nothing else significant. The labs showed potassium of 3.2 (range 3.5-5.1). The ER doc didn't think that the slightly low K could cause Alex pulse to plummet. He consulted with Dr Leong, Alex's local endo, and a cardiologist. Dr. Leong came through again by pushing him to give Alex potassium, since she and I had discussed it earlier. They checked in with us an hour after Alex took the K and her pulse was still low. They basically said "we were right that didn't help". Another 2 hours went by before any one even came in the room again. At that point the doc came in to send us home, assuming her pulse was still in the 40's but with no other symptoms they didn't have a reason to keep us. He was quite perplexed when I pointed to the monitor. Her pulse was bouncing around A LOT, but it was between 70-112. I'm still not so sure he believed it was the K that changed things. I have a hard time with the fact they were planning on sending us home with her pulse at 44; pulse under 40 is hitting the cardiac arrest stage.

Later that night Dr. Leong called to get the scoop. She sent over an RX for K light.The pharmacy had a hard time getting the K and we weren't able to pick it up until last night. Alex drank Gatorade by the gallon yesterday and we managed to keep her pulse over 50.

I'm still trying to process this but here's my theory: Without adrenals a body loses NA and hold K. Florinef reverses this. In theory then, too much Florinef should make a body hold NA and lose K. If a person takes high dose hydro some of it will convert to mineralcorticosteroids (Florinef). So, in Alex's situation I think the high doses of hydro over several day (which she needed for the fever/virus)while on her normal dose of Florinef resulted in the equivalent of too much Florinef causing her K to drop. I don't know if this is even possible but for the moment anyway I'm sticking with it.

It's Been a Tough Week!

2010-02-27T07:43:00.000-08:00

Alex and I flew to L.A. on Tuesday. I booked everything believing we had a Wednesday night appointment with Dr. F. Apparently they have changed from Wednesday night to Tuesday nights without updating their online schedule. I knew about the change before we left home, but just left all the reservations in place, planning on a return trip Thursday.

The visit with Dr. F was just a yearly "in person" appointment we try to do. Since I do all the talking when we have phone appointments I think he and Alex should physically see each other once a year.

Monday night Alex felt like she was getting a cold; no big deal. By the time we got to L.A. on Tuesday morning she wasn't feeling well. Around 7:00 Tuesday night I could tell she had a pretty good fever going on. We didn't have a thermometer with us but I gave her 600 mg of Motrin. Two hours later we got Dr. Z to scrounge up a thermometer, at that time the fever was 101.4. I have to wonder what it would have been without the Motrin. The appointment went fine. No big news, but we weren't expecting any. Alex took an extra 5mg of hydro that night.

Tuesday morning I woke Alex at 7:00 for her first dose of meds. She said she was feeling awful, but fell back asleep for about 45 minutes. When she woke she said she knew she needed more hydro, and Motrin, but was feeling really nauseous. She tried taking the hydro but instead started vomiting. For the next two hours we debated what to do. Page Dr. F? Go to an unfamiliar ER? She really tried to take more hydro but was getting panicky knowing how bad she needed it. I got out the emergency injectable; by then we were both scared. I'd read the directions on how to use it a million times, but realized then that I still had questions. Thank God for cushings-help.com. I got on line and posted a message. Within 2 minutes I had people (love you guys) calling to talk me through giving the injection.

The 100 mg was enough to bring Alex out of the immediate crisis. I spent the next two hours on line and on the phone changing plans and reservations. We flew out of L.A. at 5:00PM. We both thought the 100mg would be enough to keep her going long enough to get home. It was, with a some more hydro taken orally.

Thursday she still needed loads of hydro, over 100 mg for the day. We called the pediatrician on Thursday and made an appointment for Friday morning to see if she could figure out what was causing the need for all the hydro. Alex has been exposed to strep, but her throat wasn't super soar.

Friday morning Alex took 20mg at 7:00, but by 8:00 knew she needed more but was again too nauseous to take it. I called the local endo who told us to go straight to the nearest ER. We went, and while we were there waiting called the pediatrician and left a message that we wouldn't make the appointment because we were at the ER.

Two hours after arriving at the ER they got around to giving Alex 100 mg of hydro IV and a bag of fluids. Now I really understand why Dr. F gives us emergency injectables and says to use them before heading to the ER! I have to say how much Alex and I love her pediatrician. Dr. Leong called me twice while we were in the ER and also called both the local endo and the ER doc to consult. Bless her heart.

Results of a chest x-ray and all labs came back normal, so they sent us home! Huh? No one is interested in figuring out why this is happening? I tried to explain that while they got us out of immediate crisis (good) that as soon as the dose wore off we would be back in the same spot (bad). They said "follow up with your regular doctor". We drove home and called Dr. Leong who said to come immediately. She did a thorough once over on Alex and found nothing wrong, but agreed that the high dose steroids could be masking whatever is causing the problems. She did a swab (3 day) for strep and gave Alex wide spectrum antibiotics to wipe out whatever might be lurking.

We will see how this goes. Alex started the antibiotics last night. When I woke her for her 7:00 dose this morning she took a 40mg of hydro just in case.

I feel like the conductor of a run away train.

Way Back When...

2010-02-12T09:19:00.000-08:00

I've had a couple people lately ask about the early changes in Alex. These are her school pictures taken one year apart; back in 4th and 5th grades. Can you believe this wasn't enough to motivate a doctor to help?

For those of you fighting to get your kids diagnosed, take pictures frequently. When we see our kids every day we don't notice the changes.

A Recovery Update

2010-01-28T08:31:00.000-08:00

I thought maybe I should post a 6 month post-op blog update so that when I look back I can see where we were at this point. Alex's current dose of hydro is 13.75mg at 7:00 am and 2.5 mg at 2:00 pm. She's taking 2.5 tabs of Florinef daily and 25 mg. of DHEA. She is still on several other meds, but those are the adrenal replacements.

The good: Total weight loss to date, 18 pounds. It comes off in fits and starts, it makes no sense, but anything is better than nothing! The acne is almost completely gone. The stretch marks are gone except a few high on her abdomen. The hump is still there, but smaller. Her face shape has changed, she is smaller around the rib cage and her shoulders are shrinking. She goes to bed around midnight, instead of 4:00am. As far as anxiety, the Rx for Xanax says it was filled in August, and it's still 3/4 full.

The less than good: The weight isn't coming off fast enough :-), she is tired, really, really, tired, all of the time. She has a headache much of the time (not the killer bad ones from before). Her GI stuff is still not great; it comes and goes (pun intended). She still needs Nexium to control the reflux. She still doesn't feel "well enough" to do a full load of school work. Her memory is poor, and so is her ability to focus/concentrate.

I think that about covers it.

San Francisco

2010-01-26T10:52:00.000-08:00

Alex and I are going to S.F. on Thursday night so that we can meet two future BLAer's. Michelle will be flying in from LA for her pre op (surgery in early Feb.) and Lisa will be flying in from Washington for her first meeting with Dr. Duh. I'm excited that we have helped (re)introduce a great surgeon for those on the West Coast in need of adrenal surgery. We are all getting together for breakfast on Friday morning before their appointments; it should be fun!

Progesterone

2010-01-25T05:45:00.000-08:00

Alex did the first months cycle of progesterone. Nothing changed. Using the progesterone for 14 days did seem to mess with the balance of her hydro/fludro, which was not the least bit helpful. Her period was supposed to start within a few days of stopping the progesterone; it didn't start till 10 days later. Her pain and flow were supposed to be lessened: they were the same. The doctor says try another one month cycle and see how it works before we change things up again. So, we are back to trying to be patient.

The pediatrician changed the ADHD med from Ritalin to Vyvance. I'm picking up the script today and Alex will be giving it a try. I'm crossing my fingers.

MRI Results

2010-01-09T08:28:00.001-08:00

The results are in from the MRI last month, and the comments are less than interesting.

Dr. K's office called and said "He says there is no obvious tumor or disease". That was it. I had requested the MRI on disk and written copies of the radiology report and surgeon's report. I explained to the person on the phone that I hadn't received these things, and when pressured she agreed to fax me the two written items. The fax came through and sure enough that was the entirety of Dr. K's comments. The radiology report basically said the same thing, with a nice note saying that they had forgotten to use the dynamic protocol and would suggest they do use it next time. For the record? They "forgot" last year as well and made the same recommendation then. Jeez.

Oh, well, I think we are just not going to worry about it. Obviously there is no target worth going after at this point as far as Dr. K is concerned. Once I get the disk I'm sure Dr. McC would read it for me, but I don't think there's much point. Until next year this is going on the back burner.

Ritalin

2009-12-31T08:00:00.000-08:00

We heard back from the phsychologist last week; they said they will do a complete evaluation but that they have up to 60 days to complete it. Considering this I called the pediatricain who then prescribed Ritalin. She wanted Alex to start on a lose dose (5mg. twice daily) and see how it goes. On Sunday we gave it a try; I gave Alex the Ritalin with her A.M. dose of hydro. She woke up a couple hours later and said she felt less groggy than usual first thing in the morning. She also said she felt "stupid", because she could only focus on one thing at a time. She thought it might be helpful for school work but wasn't so sure she liked the feeling. By noon she was getting a headache and took the second dose. The headache lingered through the afternoon. By early evening when the Ritalin should have been wearing off the headache got really bad. By 8:00 the headache was so bad she thought we might need to go to the hospital. Along with the headache she started feeling A.I. She took 2.5 mg of hydro, waited a half hour, took another 2.5mg waited another half hour and took 5mg. With the extra hydro things started improving including the headache.

Now the questions... was Ritalin the cause of the headache? Was it the cause of the A.I.? Could the headache pain have caused her body to need more hydro? It's frustrating! The plan is to wait a few days and try the Ritalin one more time, one dose in the morning, and try and do school work while on it. If it doesn't work out we'll get a prescription for something else.

The GYN Appointment

2009-12-23T08:30:00.000-08:00

We saw the GYN yesterday. Two and a half years ago we were referred to Dr. Warner to see if he could help with her chronic daily migraine. We both really liked him, and felt like he was quite knowledgeable. He is retired from his "regular" GYN practice and now just does hormone replacement therapy using bio-identicals.

He was able to look over Alex's labs and have us tell him what was going on and conclude that she is not ovulating, and explain to us how he knows that is the problem. Like I said, he's a smart guy! She is not making progesterone, or at least not enough to cause ovulation to occur. In turn she has breakthrough bleeding and pain 10 out of every 28 days.

He is starting her on a bio-identical progesterone cream twice daily on days 10 to 24 of her cycle. On day 28 she should then have a normal period caused by progesterone withdrawal. That's what would happen naturally if her body was doing what it's supposed to.

ADD/ADHD

2009-12-19T16:53:00.001-08:00

We saw the pediatrician yesterday for the ADD/ADHD evaluation. They had us fill out an evaluation prior to seeing the doctor. The doctor came in and went over the forms and said she definitely fits the profile for ADD. The scoring is in several different categories and Alex's number was extremely high in the "cognitive" category. I have been worried that Cushing's has caused Alex to have cognitive deficits and just hadn't gotten around to talking to anyone about it. There is research that acknowledges it's a known problem with kids who've had Cushing's. Anyway, especially with this considered in, Alex is being referred to an Educational Neuropsychologist for further evaluation.

The pediatrician in willing to prescribe Ritalin, but would prefer Alex have the testing done with this new guy first. If he can't get her in shortly we will go ahead and start Alex on Ritalin. Right now we are just waiting for him to call back.

So that's one more diagnosis to add to the mix, and maybe cognitive deficits as well? It never ends does it?

We Spoke with Dr. F.

2009-12-16T06:53:00.000-08:00

I'm feeling overwhelmed with all I need to accomplish before Christmas, but if I don't do this post now I'll never get around to it.

Sunday night we spoke with Dr. F regarding Alex's ongoing issues. He feels her lack of energy may be from either too little hydro or too little Florinef based on the labs. Renin was dead on center normal, and Alex and I have tweaked till we felt it was the perfect dose so I don't feel like it's the Florinef. I've continued to think we need to get her hydro dose lower still but the 24hr UFC/OHCS looks quite low, leading him to believe she needs more if anything.

He wants to see another Free T4 before he would consider thyroid replacements. Her numbers are still within range and once you start thyroid meds it's generally for life, so he wants to wait for now.

As far as the female hormones he would like us to consult a GYN. We set up an appointment next week and they will probably start her on bio-identicals.

Dr. F would really like for her to have the GH stim test, her numbers have been continually dropping though they are still within the reference range. The values are higher every year until 18, so hers should be going up not down. We will ask her local endo if he is willing and able to order it; we see him in January. The cost to have it done in L.A. is significant, since insurance won't cover testing done at ETLA.

Friday Alex has an appointment to see her pediatrician for a consultation regarding AD/HD, and the possibility of getting medicated for it.

One more thing? She's down another 3 pounds. That makes 17 since surgery.

It's Been a While

2009-12-07T11:27:00.000-08:00

I haven't posted in quite some time. It's now been almost 5 months since Alex's BLA. I had really hoped things would be better than they are at this point, but I can't really complain, or maybe I can....the weight loss stopped as quickly as it started. She gained 15 pound at the time of surgery and lost those over the past 5 months, but she hasn't gotten any lower. Her energy level is still bleak; she is losing a lot of hair, and having trouble with concentration. She has frequent headaches and has been having some GI pain.

We did run some labs and it looks like her female hormones and thyroid are tanking. Considering these are hormones produced by the pituitary I think she is going hypo pituitary. I was really hoping we had years before this happened. Anyway, we have a phone appointment with Dr. F. this weekend. I'm hopeful he will start her on some additional meds that will help out.

We went to UCSF on Friday for the yearly follow up MRI. We didn't see a doctor so I'm not sure how that is supposed to work. Dr. Kunwar ordered it for us, but they said we didn't need to see him. I sent the request to get the MRI on disk and to get the written reports from both radiology and Dr. Kunwar. Dr. F. had suggested prior to the BLA that if we went with a BLA she should probably have radiation as well, since the tumor was still visible on MRI a year ago. I've ignored the idea up to this point, but now I guess we will see what the new MRI looks like.

Weight Loss

2009-10-07T13:38:00.000-07:00

Finally! Another 2 pounds down since I posted 2 days ago! I'm scared to get this excited about anything. I've come to the point where I don't trust good news, sad but true. The fact that the weight is coming off at about a pound every other day makes it feel really promising, and less like a fluke.

It seems that getting to 20mg of hydro was really the trick. She has been consistently at that dose for 10 days and lost 5 pounds in that time frame. We have messed around a lot with the Fludro dose and still don't know if we have it right, but she is now taking 1.5 tabs daily.

Besides the weight loss the acne seems to be clearing up again and the hump is looking smaller. Alex's appetite is controlled at this dose as well, which will make dieting a whole lot easier for her.

I'm keeping my fingers crossed!

I Met Another BLA'er

2009-10-06T06:46:00.000-07:00

On Saturday I met with Sybil (Sylvia) from the cushings-help message boards. Aside from talking to a few possible Cushies in Dr. F.'s waiting room this was my first ever face to face with another Cushing's patient. Sybil had pituitary surgery (failed) with Dr. McC about 6 months before Alex's pituitary surgery and she had her BLA With Dr. Chiang about 6 months before Alex had hers. Sybil was also diagnosed by Dr. F. after fighting many years with the local endos. We spent 2 hours chatting and had a great time. She is really fun and had lots of insight into the changes a body goes through with recovery.

Alex is finally down to 20mg of hydro a day and has lost a few more pounds. Since surgery she is down a total of 7. We have a really long way to go 100+ pounds is the goal. At least the number is going down consistently instead of up.

Called In To See the Principal

2009-09-25T09:18:00.000-07:00

I so hate this. I got a phone call from Alex's high school counselor earlier this week, the principal needs to meet with us. I ended up going in sans Alex; she wasn't up to it. I had to meet with the counselor and the new principle. I've decided I want the old principal back. I didn't cry 'till I was back home.

I understand their viewpoint, I feel the same way. Alex has completed 60 credits out of 260 needed to graduate. She won't graduate at this pace (duh). She is a junior, less than 2 years left to accomplish the goal. None of this is news to me, but I don't know what I'm supposed to do about it. I was told to push her harder. If I push any harder one of us (or both) is going to break. I'm sure, to the school, I just look like a mom who doesn't care, who thinks dropping out is an option. That's so not me, but how do I get that across to them? They said we need a note from the doctor saying exactly what Alex is "able" to do. They say " the doctor must be able to do something. The doctor must understand how this will affect her life." Really? Who is this doctor they speak of? I'd like to meet him. We are on our own... the doctors say give it time.

Tick, tick, tick.

Two Months Ago Today

2009-09-16T14:46:00.000-07:00

It's been quite a while so I decide I should say something.

We have reached the two month post-op point and I don't quite know what to think. Things are going okay, but not great. We were forewarned that recovery was likely to take a year. I think we are really just expecting too much too soon. We saw such major improvements right away, but since then there have been no significant changes.

Alex seems to have enough energy (spoons for those who know what I'm talking about) to make it through about 2 hours of activity daily. That means she can work for 2 hours, or do school work for 2 hours, or shop for 2 hours. That's really a huge improvement from how she was prior to surgery, but darn it we want more! It seems like there is always a problem that calls for more hydro: the flu shot, her menstrual cycle, catching a cold. Each thing seems to take over her body for a week and put recovery at a standstill. It's very frustrating.

We are still fighting the fatigue, headaches, and anxiety, and have seen only a few pounds of weight loss. Oh, and a new thing...both knees are twitching constantly to the point it has made her legs ache and have a bit of visible bruising. Weird. I'm thinking maybe her potassium is low or we need to reduce her Florinef.

My Cushie friend Robin sent me some articles on BLA recovery and quality of life. I need to let them sink in and realize this is gonna take some time.

Adrenal Pathology

2009-08-23T07:30:00.000-07:00

Diagnosis: "Diffuse adrenal cortical hyperplasia bilaterally". Strangely those words are music to my ears! I always request pathology reports, surgery reports, and anything else I can get copies of. Last week I got some in the mail. It was an envelope full of validation.

Right adrenal gland: tan yellow adrenal gland, 7.5 grams, 5 x 2.5 x 1.3 cm. thickness... a small cyst without cystic contents is present in the mid portion of the specimen...the cortex of the specimen is gray-tan and uniformly soft. The medulla is golden yellow and uniformly rubbery, no discrete lesions are identified.

Left adrenal gland: tan yellow adrenal gland, 17 grams, 7 x 5 x 1.5 cm. The cortex is gray tan and uniformly soft the medulla is golden yellow and uniformly soft...no discreet lesion is identified.

So, one adrenal was double size and the other was four times normal size. Interesting how on scan these were supposedly normal. I'm interested in the cyst and in why one medulla is describes and rubbery but the other as soft. If there is time I will ask Dr. Friedman tonight, but I won't waste my 20 minutes if I've got too many other things to discuss.

I got the surgical report as well, there were a couple of things of interest. The adrenal gland were somewhat adherent, consistent with stimulation by ACTH...there were some adhesions from the liver posteriorly and these were taken down...the spleen was quite large. I don't know the significance, but this means the adrenals were "sticky" and had started adhering to other organs. a large spleen, I don't know?

Am I tempted to send these report along with a letter to the nay sayer doctors we have seen over the years? Yep! Will I actually do it? I don't know! It does feel good having validation.

The Headaches Continue

2009-08-20T08:27:00.000-07:00

I haven't seen much change since my last post. Overall Alex is still better than she was prior to the BLA. She is now on what may be a maintenance dose, but I doubt it. She is on 2 Florinef pills, split into 4 doses, and takes hydro 3 times daily, split 17.5-5-2.5. She has had a headache almost continuously for the past 2 weeks. It is really frustrating. It worries her that it's the pituitary tumor in their acting up again, but I really think it's about getting the medication dosages correct. We have a phone appointment with Dr. Friedman on Sunday; I hope he will shed some light in the problem.

Once she got to the lower morning dose of hydro she quit getting out of bed early, but she does manage to get up by 9:00 or so. She showers and gets dressed every day and has been chauffeuring me around on errands trying to get in her 50 hours of driving with a permit, before she can try for a license. Most of the changes we saw immediately post op came to a stand still, but we are hoping to see more improvement with lower medication dosages. For now, at least, she is sleeping at night and the GI stuff is gone.

Three Weeks and Gratitude

2009-08-06T09:26:00.000-07:00

I am emotionally overwhelmed this morning. I am thankful to God and to all of our family and friends who have supported us through the years. We wouldn't be here without all my friends and advisers at cushings-help.com. Thank you all. The tears are flowing.

So, the big news? Today is Alex's first day of work. I truly believed that it was likely she would never be well enough to leave the house; that she would live with us forever on permanent disability into adulthood. Many times I felt she would die before she was cured. It is incomprehensible that after only 3 weeks she has shown such vast improvement.

There have been a lot of ups and downs over the past couple weeks, but the steady progress forward is apparent. The GI stuff has all normalized, we hope that means Crohn's is a thing of the past but realize this may just be a remission. The headaches have been bad, but we think that once we get the dosages stable on both the hydro and fludro things will improve. Most mornings she is up at 7:00 or 7:30 feeling fine but there seems to be a mid afternoon crash, with tiredness and headache for the rest of the day. We are still working on it.

Stay tuned for more positive updates!

It Will Be Two Weeks Tomorrow

2009-07-29T06:14:00.000-07:00

I am so happy to see things still progressing in the right direction. I can't believe how quickly things have changed. Alex gets up and out of bed every day...usually around 7:00 am. That is amazing compared to what time she was dragging herself out of bed, noon or 1:00 pm. Not only does she get out of bed, she is taking a shower every day and running errands with me!

Yesterday she met with her school counselor and registered for classes that start on the 10th. She isn't taking any online classes because she thinks she will be feeling well enough to actually go to the campus. Later in the day she bought a new desk for her room because she is excited to get started on school work. And another thing? She has a job interview, and it sounds like a sure thing. The Montessori preschool the kids went to is interested in hiring her part time and they are willing to work around her health/recovery!

We are still weaning; her current hydro dose is 20-10-2.5. She is taking half a Florinef in the am and half in the pm and she also started DHEA last week.

She's Melting!

2009-07-25T08:12:00.000-07:00

It is so bizarre! I really don't understand how this happens but Alex's appearance is changing. She looks like she has lost a lot of weight but she hasn't actually lost any at all. Her face shape is different and her belly looks so much smaller. Brian thought it might be the change from fat to more muscle but that doesn't make sense at this point. She is still doing absolutely nothing; well, okay she did leave the house yesterday for the first time, but she sure isn't doing anything to build muscle yet!

Years ago when I first believed that Cushing's was the issue there were times we would see her face shape change. Every once in a while we would be sitting at the table eating dinner and Brian and I would look at her and look at each other and both see it at the same time. That silent communication thing (30 years together) where we said nothing but silently acknowledged that she had changed yet again before out eyes.

I am excited! It feels like we are started down a road to recovery!

One Week Post-Op

2009-07-23T09:03:00.000-07:00

At this point we have reduced the dosage of hydro to 30-15-10, with reductions every day. We plan to get labs done soon and start DHEA after that. We also plan to start the Florinef soon, probably tomorrow, we are waiting to get to a lower dose of hydro before starting the Florinef. I think we will start with 1/4 tab a day and increase by 1/4 tab 'till we get to 1/2 pill twice a day.

We were told to expect recovery to be two steps forward one step back, that seems pretty accurate. Yesterday was a bad day. Alex was having a lot of pain and some major mood swings and depression.

On the positive side, things are changing. Her acne is vanishing, her skin has more color, the stretch marks are fading, the hump is smaller. Her weight hasn't changed, but she looks different. Her face looks thinner and her belly looks different; it looks like a fat person tummy instead of a pregnant tummy. Between the belly and the hump improving her posture looks different; it's hard to explain, but she looks taller and thinner. I didn't realize how much the hump was causing her to slouch.

I know she feels like poop, but we can see positive changes. Things are getting better.

Bilateral Adrenalectomies

2009-07-22T07:37:00.000-07:00

We spent the night prior to surgery in San Francisco. We were up at 4:30, out of the hotel at 5:30 and at the hospital by 6:00. They called us back to prepare at 6:45. As opposed to the last surgery this prep was completely different. Everyone was more relaxed, the anesthesiologist hung out with us, Dr. Duh came by to chat, and the IV wasn't a problem. They rolled her away from us at 7:30. Someone form the hospital checked in with us and gave us updates every hour or so during surgery. At 2:30 Dr. Duh came to find us and tell us how it went while his team finished up with her. He is really great, he acts as though he has all the time in the world to talk. He said it all went well; her adrenals looked like "Cushing's adrenals", inflamed. He also said she had a lobular spleen, nothing to worry about.

In recovery they were giving Alex Morphine that wasn't working and Fentanyl that was. The switched the Morphine to Dilaudid and that helped with the pain.The pediatric floor was full so they put Alex into an overflow of ped's on another floor for the first night. It was nice, because she got a private room and a nurse with only 2 patients. After 24 hours they switched her into a shared room in ped's.

Because of the recent Crohn's flare they brought in the ped's GI team. With the nausea prior to surgery it was hard to gage what was what and they really wanted her to eat. After the first two nights in-patient they told us she could leave once three things happened; she needed to eat something (she had literally not eaten anything in a week besides 3 bread sticks and 10 Ritz crackers), she needed to get off the IV pain meds, and onto only Vicodin, and she needed to poop (that had been a week as well). After 3 nights she had eaten and gotten off the IV, so they let her leave without a bowel movement.

The ride home was interesting. They gave her a Vicodin before we left and called the Rx into the pharmacy at home. That meant we had to race for home to get her next dose. Sunday afternoon traffic was heavy but Brian did his best to drive 80 mph despite it. She was feeling awful by the time we got her meds, but we made it from dose to dose in 4 hours.

On to recovery!
.

This Is It~ The Time Has Come!

2009-07-15T09:49:00.000-07:00

We leave for S.F. later today, when Brian gets home from work. It's lucky we booked a room for tonight; the surgeons office called to tell us she has been bumped up to 7:30am with a 6:00 arrival time tomorrow morning at the hospital. The good news there is that she doesn't have to go without food and water till noon, and with the earlier appointment they only ask you to arrive 1.5 hours prior to surgery instead of 3.

Since the Sunday trip to the hospital Alex hasn't been able to eat anything. The abdominal pain is better and there has been no more bleeding, but she still has diarrhea and is very nauseous. She's taking Zofran for the nausea but it doesn't seem to be doing much good. We saw the G.I. doctor yesterday. She thinks the high dose steroids in hospital will be a nice treatment for the Crohn's. She says move forward, get the surgery done, get on a maintenance dose of steroids and then we will do the scopes again. I suppose the Crohn's was aggravated by stress. Between the upcoming surgery and having the dog die on Saturday it was just too much.

So... this is it!

G.I. Bleeding and the E.R.

2009-07-13T11:26:00.000-07:00

Yesterday morning when Alex woke up she was complaining of really bad abdominal pain. What started out feeling like constipation eventually turned into diarrhea, followed by bleeding. I guess maybe that's normal with Crohn's? I don't know; it's never happened to her before. She was pale, shaking, and nauseous as well so I called the advice nurse who told us to go directly to the E.R.

They ended up giving her fluids, pain meds, anti-nausea meds, running labs and ordering a CT. Even with both Zofran and Reglan in her system she had a really hard time drinking the contrast without puking. They consulted with her G.I. doc and let us leave about 10:00 last night. I called the G.I. doc this morning to see her for follow up and we will be going in tomorrow. Alex really isn't feeling any better today, and the anxiety it's causing isn't helpful. She's really worried they will cancel surgery.

Will this stuff ever end?

Still Counting Down

2009-07-11T07:31:00.000-07:00

I though I would try to post a "before" picture here, in hopes of having some great "after" pictures eventually; this was taken a month ago.

Last night Brian and Nick were both out of town and Alex and I ended up having a long talk about surgery and our expectations.I don't want to get her hopes up that this surgery will be the "cure all" foreverything, but I do want her to go into it with a positive outlook. She feels like she has been told so many times that this surgery/pill/doctor will be the answer to her problems that she no longer believes there is an answer.

She says she isn't expecting miracles, but would be happy if she could: a.) feel decent on a regular basis and b.)lose weight with diet and exercise. Those don't seem like too lofty of goals from my standpoint.

2009-07-11T07:04:00.000-07:00

One Week To Go

2009-07-09T06:42:00.000-07:00

Dr. F was supposed to call Tuesday night; they rescheduled to Wednesday night between 5:00 and 7:00. I waited till 10:00 and the went to bed after sending their office an email. This morning there is a response saying he is sorry and will call this morning around 8:00. This should be a quick, easy call, I'm not expecting any problems!
Alex has her first lesson driving with an instructor today. She got her permit about 2 weeks ago, but in California it isn't valid until you drive with an instructor. Brian took her out twice and I took her once, despite it being illegal. It seems pretty dumb to me to put a 15 year old behind the wheel for the first time in a neighbor hood full of people, cars, and traffic. Brian found an area where development of a neighborhood was halted by the economy- roads with no people- a ghost neighborhood! It will take 6 months to get her license, 5 lessons with an instructor and 50 hours behind the wheel with one of us. With surgery and recovery I imagine it will take more than the 6 months.

8 Days To Go

2009-07-07T20:10:00.000-07:00

It's finally getting close! We have a pre-op phone appointment with Dr. Friedman tomorrow night and a pre-op phone appointment with the "prepare clinic" on Monday. The surgeons office called yesterday and has me a bit worried (only because experience has taught me too many things can go wrong). They offered the option of a pre-op with the surgeon for Friday; I declined. I feel like our prior appointment with him was sufficient and really don't want to do the 5 hours of driving, round trip, for no reason. They also said Dr. Duh would like to speak with Dr. Friedman this week to "confirm everything". I sent an e-mail and will also ask Dr. F to do this when I speak with him tomorrow. This is where I'm afraid of there being a wrench in the plan.

I finally heard back from the cardiologist, sort of anyway. I didn't get complete results on the echocardiagram, just a note on a script pad saying she had cardiac clearance for surgery. I told them to fax me everything and that was all they sent over.

This and That

2009-06-11T12:46:00.000-07:00

I guess I've been busy: I sure haven't been blogging. Nick graduates from high school tomorrow and I'm finally done with work on the Sober Grad Committee. We turned in Alex's text books as well, so we are on break for now.
The cardiologist did an EKG last week and we are set up for an echocardiagram on Monday. So far he said the good news is he doesn't think there is anything wrong with her heart, the bad news is he can't fix the pain. If everything still looks okay on Monday we need to call the GI doc again and set up an appointment for upper and lower scopes.
Counting down... surgery is 5 weeks from today.

Cardiology, Add Another Doc

2009-05-30T08:51:00.000-07:00

Over the past two weeks or so Alex has had some new stuff going on. It started with what I guess are anxiety attacks. She had feeling of doom and gloom, felt like her heart was racing, tightness in her chest and she was pretty emotionally unstable. I took her in to the pediatrician who rx'd Xanax; it has worked pretty well. She says it helps her to calm down anyway, and not worry so much.

Aside from the tightness in her chest she has also been having severe stabbing type pains a couple times daily. We were assuming it was heartburn; she has reflux a lot and is taking Nexium twice a day, but this was different. We talked to her GI Doc on the phone and she said to try Tagamet; it has helped some...maybe. We managed to actually get in to see the GI doc and she prescribed Carafate; thinking possible duodenal ulcer. She said if it didn't work we needed to get Alex a cardiac consult.

I called back yesterday and told the doctor the Carafate didn't seem to help and it was causing severe diarrhea. So, now they are arranging a cardiac consult. They want to get her an EKG and echocardiagram to make sure her heart isn't the problem. Alex originally told me she thought she was having a heart attack. I'd like to bury my head in the sand now, but this needs to be taken off the table before she undergoes surgery. Anyone see the House episode with the young girl with Cushing's? She presented with a heart attack.

The Never Ending Low

2009-05-18T19:34:00.000-07:00

The last couple weeks have been so weird. Alex has been in such an extreme low it's unbelievable. She has lost 10 pounds, she has no appetite, the acne is gone, and other symptoms are going as well, but she feels AWFUL. This is what I expect after the BLA, not before. She has been taking whopping doses of hydro ( 5mg at a time, but up to 30 or 35mg in a day) just to keep from vomiting and shaking. Along with feeling physically awful she seems to be in a really major depression. I just don't know what to think. I'm theorizing that her pituitary has completely quit making ACTH on it's own, it's gone to sleep as the tumor has taken over it's job. The problem with that is that when the tumor cycles off her pituitary isn't "waking back up" to fill in the gap anymore. After the BLA she is supposed to live on 25mg. of hydro a day, so I really don't get why she needs more than that now. Hopefully things cycle again soon and change. this isn't a fun place to be.

What's In A Name?

2009-05-03T08:06:00.000-07:00

Cancer.I've thought about this a lot lately. Our last two visits to doctors were both to see surgeons who primarily treat cancer patients. Their offices were filled with a collection of bald-headed chemo patients and those wearing masks to prevent infection. It is truly heartbreaking. While Alex and I were saddened to see this it also opened her eyes. "I'm really sick, aren't I?" It's funny; you tell someone Cushing's Disease, and you might as well have said you have a headache. You tell them cancer and the world changes. I'm not diminishing cancer by any means, but it would be nice to have a "label" that would help people understand the seriousness of this disease. My mom had cancer, my dad had cancer, even Brian had skin cancer, but they got a diagnosis, got treatment and were able to go on with life.

I don't think it's completely accurate but some text books state that the survival rate for Cushing's is 50% at 5 years if untreated. Add to that that the typical patient doesn't get properly diagnosed for 7 years. Nice discrepancy, huh? I'm sure it sounds dramatic but some days I'm really scared we won't make it to the finish line. Surgery doesn't scare me, the disease does.

A Surgery Date, Finally!

2009-05-01T09:37:00.000-07:00

I said I would be happy if they would just call and tell me the date. I lied. I'm still not happy. ELEVEN weeks from now, July 16th. There is no way to get in sooner. Dr. Duh wants it scheduled at the Children's Hospital at UCSF; he usually does surgeries at the UCSF Cancer Center across town. He did tell us he would want to do it there because he would be able to put her in the pediatric ICU, where he feels she will get better care. I just wasn't getting the fact that he only has certain, limited, days available to him at that facility.

School starts mid August and I was really hoping she would be able to start the new school year partially recovered. I have heard so many different things when it comes to recovery that I have no idea what to expect. The surgical recovery shouldn't be bad. It's the recovery from Cushing's and trying to get the meds right that can take months, or years. It seems that those who have had Cushing's the longest and are in the "worst" condition are the ones who take the longest to recover. That doesn't give me much hope for a speedy recovery. I think Alex has probably had it since birth and her condition couldn't get much worse.

Hope... or Lack Thereof

2009-04-30T06:27:00.000-07:00

Some days hope eludes me. I went to bed last night with a headache and in tears. This morning is starting the same way. In the words of Forrest Gump "Sometimes there just aren't enough rocks". I've thrown all my rocks, and I'm still feeling heartbroken. Between the medical stuff and financial problems I handle it; until I add another thing to tip the scale.

Nick is graduating in June, only 6 weeks from now. While I should be celebrating, instead it just gives me more to worry about. He has Sr. Ball in 2 weeks; tickets are $150.00! Besides tickets we need to rent a tux, buy a corsage, what else? Then there's Sr. picnic, and Sober Grad Night and Sr. Sunrise and, and, and, the list goes on. I have the time, just not the money or the mindset.

Even this all falls back on THE ILLNESS. While I watch one child move forward it's hard not to see the other held back by disease. Both kids always loved school and all the social stuff that goes with it. I don't think Alex resents it as much as I do. For her it's become a way of life. Of course that just breaks my heart even more. No football games and dances, no boyfriends and parties for her. Graduation? I just don't know. We are coming to the end of her sophomore year and she should have earned 160 credits toward graduation at this point. She might have 50 by June. She plans on college someday, and I can only hope and pray. Even her choices for the future are dictated by her health. Health insurance will always be an issue. So much for telling her to let her heart lead her to a career choice, instead it's "find a career where you can get good company insurance with no clause for preexisting conditions".

BTW- still waiting to hear from the surgeon's office.

Still Waiting...

2009-04-27T12:34:00.001-07:00

We expected to hear back from the surgeons office the end of last week with a date. No such luck; I called them on Thursday to give a gently nudge. The woman I talked to said that the day we were there they had 41 patients instead of their normal 10-15 and all needed to get scheduled for surgery. They are just working their way through the list. So, no call Friday either and I'm afraid to leave the house today. I have a fear that if they call and miss me instead of calling my cell they will continue down their list and we will be moved to the bottom. Oh well, I'm meeting a friend for coffee while her mom is in surgery this afternoon. Alex says she will answer the phone if the surgeons office calls, and tell them to try me on my cell. If I don't hear from them today I'll call them tomorrow. My patience is wearing thin as usual.

Pay It Forward

2009-04-20T18:41:00.000-07:00

Recently a Cushing's patient, Kristen, invited me to become a member of her Meet-Up Group for Cushing's patients and survivors. It's a virtual group, we won't actually be meeting face to face. Members are sponsors and sponsees, like AA; those who have been through it are there to help those who need support. I've already emailed back and forth with a few "sponsees" and it feels good to be helping someone. Or at least I think I'm helpful!

Sometimes I wonder if there is a path I'm supposed to be finding here. Maybe God has a plan I'm not aware of? A friend of ours was recently injured and I spent 2-3 hours at the hospital every day with him for over a week. I know he thought I was crazy to be there all the time, but I have this total conviction that every patient needs an advocate (they just don't always know it). Maybe a few years down the road this will all become clear to me? I wonder if there is an income potential for this? On the other hand maybe a few years down the road I will be fighting the same battle, older and wiser still.

Statistics from Dr. Duh

2009-04-18T13:20:00.000-07:00

Prior to yesterday we had been told BLA would offer a 99% cure rate for Cushing's. Dr. Duh, believes the rate to be closer to 90%. Of those "uncured" approximately 5% will need further treatment, the other 5% are still producing some cortisol, but not an amount that is worrisome. He spoke about adrenal remnants that can be left behind at surgery; tiny pieces of the adrenals can be missed even with meticulous surgical skills. As an added bonus other endocrine organs can also "learn" to make cortisol. He said he has one patient that he feels was a surgical failure, but she is thrilled because her body has decided to produce only the appropriate amount of cortisol and she no longer needs to take replacement hydrocortisone. If that's not a success I don't know what is!

I like hearing 99%, but I think the new number is more accurate based on patients experiences I know of. I'd like to think BLA will be the end of a long hard road, but realistically, well...I won't be letting my guard down.

A Change In Attitude

2009-04-17T18:10:00.000-07:00

I'm feeling so much more positive since my last entry. Today we met Dr. Duh at UCSF, he is their top dog for endocrine surgery, and was one of the first in the country doing BLA's laparascopically. He's done over 500 and really sounds like he knows his stuff.

I went in prepared to fight and was pleasantly surprised. The "fellow" came in first and had a really nice talk with us, he was really well informed and did a great presentation. I got totally antsy when he made comments to the effect that we would probably need to do "a little more" testing, get an adrenal CT and eek, meet with their endocrinologist. I held most of my thoughts 'till Dr. Duh came in as well. He is really great, very personable and very knowledgeable as well~ a really great bedside manner! He offered to have us speak to his endocrinologist, but it wasn't mandatory. Needless to say we told him we weren't interested. We will work with one of the UCSF pediatric endocrinologist while in the hospital, but that's all. He looked at the CT done at NIH and said another isn't needed and the only tests he wants done are a single cortisol, an ACTH level and one 24hr. UFC. He said they are just to have a baseline. He gets the "cyclic thing" and completely understands that the numbers are likely to be completely normal and he has no problem if they are. He event talked about diurnal variation, and how 8:00 AM's weren't necessarily significant in cyclics!

His scheduler is supposed to call us the end of next week. They did say it is going to be a while before he has an opening for surgery; June at best, August at worst. Alex says she would prefer to wait for him than to use someone else; I'm feeling the same way. It feels comfortable; she will be back in the same pediatric ICU where she was for the last surgery and they were really great. Once again... we wait!

Anger and Bitterness

2009-04-14T11:40:00.000-07:00

Negativity is seeping from my pores. Most of the time I handle it, but some days...it gets the best of me. Right now I hate most "medical professionals", those who don't care, those with the big egos, those without enough time. This round of bitterness stems from an e-mail last night from the surgeon at Stanford. He hasn't heard back from Dr. Friedman and feels that we should, after all, see the endocrinologist he works with. Why don't we just come back down to Stanford and see what he has to say? Ummm...maybe because I don't care what he has to say? Maybe because Alex doesn't need to suffer through another 7 hour day of driving? Maybe because he will say he has a different opinion and doesn't think that a BLA is the best decision? I am well aware that Alex's case is "complex". Why do these guys get to spend a half hour with a patient and determine what is "best". Okay, so they went to medical school while I was at beauty college, but I am the one who has exhaustively researched what is right for my child. I guess this means we got to S.F. for the Friday appointment with Dr. Duh. I suppose he will say the same thing?

Medical Alert Jewelry

2009-04-11T14:32:00.000-07:00

We still haven't ordered a medical alert bracelet. I am being totally indecisive on this one. A year ago, before pituitary surgery we had this same dilemma. Alex wants something that looks pretty: I want something that screams "read me in an emergency". Last time we ended up getting a silver bracelet from Tiffany's. One of the popular ones with the "return to Tiffany's" heart shaped charm. Theoretically we were going to put the medic alert charm on the same bracelet. Of course Alex loved her Tiffany's bracelet so much she didn't want to ruin the look by adding the ugly charm. In the end she never really wore the medical charm. We knew pretty quickly that she wasn't cured and that it wasn't that important.

So here we are again, bracelet? necklace? good quality to last forever? cheap to be replaced frequently? I'd like to know if having the "name" brand makes a difference in an emergency; do paramedics or docs actually call the number to get the information from the service? There is a yearly membership fee. To use their service you have to buy the bracelet from them, and they seem to have the ugliest collection.

Alex pointed out that since I probably won't leave her side for months post op it's not like we are in a big hurry to order. It's just not like me to procrastinate!

A Step In the Right Direction

2009-04-08T12:06:00.000-07:00

This is from my email box this morning.
Mrs. Bibby,
I've exchanged messages with Dr. Friedman. Expect to talk to him soon and will get back to you right away. I have reviewed your daughter's records in more detail, and your decision to proceed with the bilat adrenalectomy does seem very appropriate.
BV
This seems like we are making progress anyway. I wish I knew his definition of "soon".

Blog Visitors

2009-04-05T11:18:00.000-07:00

I'm really curious; am I writing to an audience? I have no idea if anyone is following this blog or if it's strictly me journaling for my own benefit. After a month plus I've decided I definitely enjoy doing it. I don't know that I would say it's therapeutic exactly, but putting something in writing seems to mean I have less stuff cluttering up my brain.

If you are reading this will you please either click on the tab and post a brief comment to let me know you've stopped by, or if you have my e-mail address send me a quick note? Thanks!

I Should Have Seen It Coming

2009-04-04T12:10:00.000-07:00

Well, I got the rug pulled from under my feet again. It felt more like getting hit up side the head with a shovel. How is it that I remain optimistic going in to these appointments? Will I never learn?

Yesterday morning Alex was feeling particularly awful. She was in a low to rival all lows. Before we could even leave the house she took 3 doses of hydro to get past the extreme nausea. A three hour drive got us to Stanford just in time for her 2:00 appointment. The receptionist told us Dr. V was running 45 minutes to an hour behind. The finally called us into the exam room at 3:40. Another hour later we were still waiting. I stuck my head into the hall and complained. They sent in a doc in training. He was completely lost and baffled; he had none of the information needed. Out he goes. A little after 5:00 (yes this was a 2:00 appointment) the doc in training along with the surgeon arrived. By then Alex and I are completely frazzled and exhausted.

Dr. V gave us a heartfelt apology for the wait and gave us his full attention. The good news? I really do like the guy and feel he is qualified to do the surgery. The bad news? He feels "considering the complexity of the case" he needs to talk things over with Dr. Friedman and some of his Stanford associates before he is willing to schedule surgery. I can't blame the guy I guess, he doesn't know Dr. F, so his caution is warranted. I know I should respect that he is not someone to jump in to life altering surgery uninformed. I just wanted so badly for this to go more smoothly.

I swear the long wait threw me off my game. I should have explained my decision making process; I thought of that in the car on the way home. This morning I sent Dr. F an e-mail to tell him to expect to hear from Dr.V, but who knows how long it might take for the two of them to connect by phone. I sent Dr. V an e-mail as well. I gave him a complete explanation of all the things I failed to mention yesterday. I just don't know what to think now. I don't know when we will hear back or if he will be willing to do the surgery once he talks to everyone.

Another Sinus Infection

2009-04-01T10:55:00.000-07:00

Prior to pituitary surgery Alex never had a sinus infection; things change once they mess around inside there. This past year she has had several, the latest one this week. Over the weekend she was complaining of a headache, eye pain, sinus pain and had a low grade fever off and on. Sunday night she had her first ever gushing nose bleed. Weird, because earlier in the evening she said it felt like something popped in there. The problems are always on the left side; it's the one they went in through for surgery.We saw the pediatrician on Monday and got Alex started on Augmentin yesterday. Hopefully 10 days of antibiotics will get rid of it this time.

It's going to be a week of appointments. Next up is the G.I. doc on Thursday, followed by the surgeon at Stanford on Friday. Next Monday she has a dental appointment. It should be fun just getting her up and out of the house that many days in a one week time frame. As of yesterday she seems to be cycling up, so that should help, if it lasts.

Fast Forward? A New Surgeon

2009-03-27T13:26:00.000-07:00

The wait has been killing me. No doubt I mentioned this before, but Dr. Duh can't even see us till 3 weeks from today and who knows how long after that till he has time for the actual surgery. When I spoke to his office weeks ago they said he was scheduling surgeries in June. Does that mean by the time we see him and are allowed to schedule he won't have openings till July? August?

The night before last Alex was literally crying herself to sleep. I hate that I can't do anything, it is so frustrating as a mom to watch your child in pain (and depressed) and not be able to do anything but tell them to wait it out. Anyway, I had a talk with God that night and told him I didn't think I could do this much longer and needed some divine intervention. When I woke up the next morning (yesterday) I was feeling inspired to do something about it and I sent a quick email to Stanford University asking if they had anyone with experience in laparascopic BLA. A surgeon, Dr. Visser, called me within hours and left a message, and also replied to the email saying he would get in touch.

Last night he called, with apologies for not getting hold of me sooner! Okay, I love this guy already! He is young and not an endocrine surgeon, but those are both things I can live with. He says he does an adrenalectomy every other week and has about 50 under his belt. He did explain that he is young and has done fewer (obviously) than the surgeons who have been doing it for decades. He trained at UCSF and considers Dr. Duh a mentor. He has extensive skills in laparascopic surgery and has never had to convert a lap surgery to an open surgery. The really exciting part? We now have an appointment to see him a week from today! He says he will get Alex in for surgery quickly after that if we are interested. Most of his patients are cancer patients and don't have the luxury of waiting, so he gets them in quickly.

So, for today it feels like my prayers were answered. I think Alex and I were both a bit shell shocked last night. It seems scary now that surgery might be a reality in the near future.

Radiation? Where did this come from?

2009-03-23T21:20:00.000-07:00

I will never get used to e-mails from doctors. Somehow it's just seems wrong to find life altering information waiting between the Viagra ads and lottery winner notifications in my inbox. Last week I heard from Dr. McC and forwarded the message (see my last post) to Dr. Friedman, today I received his response to it.

Interesting
I would vote for repeat pit surgery, if its not too late, if she goes for bla, I would probably do radiation therapy to those spots

How do I respond to this one? I was feeling quite comfortable with my decision; now I'm second guessing again. What is he thinking here? Is he considering this a fast growing tumor? I thought those were the only ones that needed radiation. Guess it's time to do some more research on that. At this point I suppose I should think about the very real possibility that although we are looking at a 99% cure rate from Cushing's with BLA, it doesn't mean the war is over.

The headaches are back. That's a biggy for me. If only we could tell whether the cause of the headaches is fluctuating cortisol levels or "mass effect" of the tumor. All the docs have told me that a little tumor like these are couldn't be causing the headaches, only the cortisol issues could do that. Still I wonder. I will be kicking myself if we do the BLA and the headaches stay. How hard will it be to convince the neurosurgeon to go back in then?

The latest from Dr. McC

2009-03-17T17:46:00.000-07:00

In the beginning of January I sent Dr. McC (neurosurgeon) a disk with Alex's 6 month post op MRI, asking for his opinion. This man is a Godsend! I find it unbelievable that a surgeon is willing to look over an MRI, sent from out of state, and give his thoughts on it at no charge whatsoever. In our case this is the 3rd time he has offered his services. Today I received his response.

Dear Mrs. Bibby,
I have looked at the disc you sent, and at the report. I again think there is still some decreased signal in the right half of the gland, which was what I saw on the earlier scan but with less certainty. It doesn’t have sharp margins on its medial side, so might be hyperplasia but equally, could be a subtle area of tumor. The report comments on a small cavity at the bottom edge of this area, which I saw as well, indicating that in the previous operation this area was touched, but it is very small indeed and so I do still think that some residual disease is still present. The left side of the gland looks fine. I know you mentioned trying to decide on repeat pituitary surgery vs. adrenal surgery—this is always a personal decision, and it is honestly hard to know whether removing the area in questions would effect a cure, or whether it would not. Certainly the possibility of causing diabetes insipidus would be present, as such removal would take the surgeon quite close to the stalk. Let me know if I can help further.

So, my feeling is that going forward with the BLA is still the right decision. It's really hard not to do a second pituitary surgery when the surgeons can see something on MRI, but I have a hard time buying that a possible cure makes it worth the risks. This is the first I've heard mention of concern for diabetes insipidus based on the location of Alex's tumor. Permanent DI can be treated, but that's just one more thing to worry about if we were to choose a second pituitary surgery.

Dual Diagnosis- Crohn's Disease

2009-03-12T09:20:00.000-07:00

Around the same time Alex was diagnosed with Cushing's Disease she was also diagnosed with Crohn's Disease. I'm still not sure I buy this one, and actually her GI doc isn't so sure either. Alex started seeing a local ped's GI doctor back in 2003. At that point in time she was having bouts of abdominal pain and what she would describe to us at the time as "throwing up in her mouth". This eventually led to a diagnosis of irritable bowel (characterized by intermittent constipation and diarrhea), and of acid reflux. Down the road a bit they scoped her and gave her the label of erosive esophagitis. Symptoms waxed and waned over the years and she tried lots of different meds. The next time they scoped her they added gastritis as a diagnosis. A few years later they scoped her again, had her do a "pill camera" and they also ran an upper GI with small bowel follow through. This round of testing brought us to the Crohn's diagnosis. By then (about a year ago) Alex had scarring and lesions all the way through her digestive system; esphagitis, gastritis, ileitis, and proctitis. Gee, I guess this would explain the pain?

So now here's the question...does she really have Crohn's or is this all caused by Cushing's? Crohn's is often treated with steroids; Alex has an abundance of steroids, except when she is in a low cortisol cycle, then she has sub normal levels. Could her body be trying to treat itself by producing excess cortisol? Or, could the Crohn's not exist at all and the GI symptoms are just triggered by the cycling steroids in her body?

We may get some answers once she has the BLA. After surgery she will be on steroids for life. It will be interesting to see how it all works out. I hope and pray once steroid levels are normalized in her body her GI symptoms will disappear. My biggest fear? That she really does have Crohn's and that steroid replacement post-op will be a nightmare to manage, with more needed every time the Crohn's flares up.

We have an appointment

2009-03-10T09:53:00.000-07:00

I reached the surgeons office yesterday and managed to get on their calendar. I hope this means he is willing to actually do the surgery. Personally I'd like to skip this step; his record speaks for itself. I'd prefer to make an appointment for surgery and just meet him the day before at the pre-op. No such luck. We have an appointment on April 17th, five more weeks of waiting. Until then I will be praying that he doesn't meet with us simply to tell us he won't do the surgery.

Of course the scheduled the appointment for 9:00am. That means we will need to spend the night in San Francisco. Alex and I both love the city, but a bargain room and parking is $200.00. The drive from here is only about 2 hours during non-rush, but at that time of day it would take us 4. There's no way I could get Alex in the car at 5:00am, she usually can't get out of bed till noon.

Phase 2- diagnosis

2009-03-08T17:03:00.001-07:00

This starts from where my "In the Beginning" post leaves off.

After returning from NIH with no answers I was initially frustrated beyond words. With a little time and encouragement from my friends at cushings-help.com I mailed the disk with Alex's pituitary MRI that was done at NIH to Dr. McCutcheon at MD Anderson Cancer Center in Houston. I also scheduled a January appointment in Los Angeles with endocrinologist Dr. Theodore Friedman.

On New Years Eve, December 31, 2007 I received an email from Dr. McCutcheon. Here is part of his response, "By my reading there is indeed a lesion in the pituitary, largely occupying the right half of the gland..." He went on to explain, in detail, what he saw and the implications. With this piece of the puzzle we were finally getting somewhere! With this Alex's pediatrician was able to refer us to neurosurgeons at both Stanford University and the University of California, San Francisco (UCSF) both in January. Although the radiologist at NIH was unable to see irregularities in the pituitary all 3 neurosurgeon were able to see a problem.

January also took us to Los Angeles for our initial appointment with Dr. Friedman. He told us from the beginning that he was fairly certain Alex had Cushing's disease. He ordered more testing and on Easter of 2008 we received an email from him with an official diagnosis and recommendation for pituitary surgery. Surgery was then scheduled at UCSF with Dr. Sandeep Kunwar.

The Referal Process

2009-03-05T11:28:00.000-08:00

Apparently this is going to take a while! Dr. Friedman sent his referral to me by email, and sent nothing to the surgeon directly (he told me I could send it over myself). I faxed it over to the surgeons office but I was doubtful they would be happy with it, all he actually sent was the dictation of our appointment. I followed up by calling the surgeons office yesterday. I was right, they wanted a lot more information before they would consider setting up an appointment. I ended up faxing over lots of page of lab results, prior dictations, radiology reports etc. Hopefully this will be enough for them to schedule an appointment. They did tell me on the phone that he is scheduling appointment in April for office visits, and we will need one of those prior to surgery. After we see him then we can set up surgery for June; maybe they can squeeze her in sooner since she is a pediatric case. So, nothing is going to be happening any time soon. I will call them back tomorrow and see if they are ready to at least set up the first appointment.

Some of the basics

2009-03-02T11:57:00.000-08:00

Cushing's Syndrome can be caused by either a pituitary tumor, an adrenal tumor or an ectopic source. In Alex's case once testing proved positive for excess cortisol and the surgeon could visualize a tumor (or irregularity) on her MRI she was approved for pituitary surgery. Testing was long and involved! Her surgery in May of 2008 was not successful, but it took another round of testing to prove the excess cortisol was still an issue. In her case the pathology from the tissue removed was classified as ACTH hyperplasia. In lay terms I guess I'd say the cells in her pituitary have run amok and a producing ACTH, the chemical messenger that tells her adrenals to make more cortisol. The hyperplasia can be through out the gland and may be hard to identify, even by a skilled neurosurgeon. Alex's surgeon took out what he could see, but if he were to go again again he would plan on removing half of her pituitary and hope he got all of the tumor/hyperplasia. Some people manage fine with only half a pituitary (or less) but the chance of hypopituitaryism, permanent damage to one or more of the 7 functions performed by the pituitary, would be quite high. For this reason we are choosing BLA. The ACTH producing cells will stay, and continue sending out their signal, but there will be no adrenals to receive the faulty message. Of course no adrenal glands means she will forever have to take medications to replace the steroids/hormones her adrenals would normally produce.

Approved for surgery!

2009-03-01T17:37:00.000-08:00

We got the call from Dr. Friedman this evening. He has no doubt that Alex still has Cushing's and has given her his approval for surgery. He gave us the choice between a repeat of the pituitary surgery or bilateral adrenalectomy- henceforth known as BLA. After much thought and internal debate we are opting for the BLA. It will mean a life time of steroid replacement but the chance that it will be a cure for Cushing's is 99% vs, at best, 50% with another pituitary surgery. Alex's pituitary surgery, while unsuccessful, at least left her pituitary function intact. We feel that alone is enough reason to avoid going in again; considering the neurosurgeon would plan on removing half of the pituitary itself instead of just tumor the second time around.

We are being referred to Dr. Duh at UCSF, he is one of the few surgeons in the country skilled at bilateral adrenalectomy using a laprascopic approach. Hopefully he will be "on board" with the idea and diagnosis. For now we wait for the referral process.

In the beginning

2009-03-01T11:45:00.000-08:00

So, I guess if going to do this I should start at the beginning. I suppose it would have been easier if I'd started blogging years ago. Never the less, here goes...

The first time we really realized there was a problem Alex was 7. It started with complaints of frequent severe headaches. When we really got her to articulate we realized that she actually had a headache, to some degree, 24/7. With the help of a great pediatrician and an awesome neurologist Alex was diagnosed with "chronic daily migraine". Over the next couple years we tried every migraine/headache remedy known to man. Daily meds, acute meds, injections and all. Some worked better than others, but nothing gave us resolution.

By the time Alex was 9 or 10 she started having G.I. issues as well. nausea, abdominal pain, vomiting, heartburn, reflux and diarrhea. Off we went to the pediatric GI doc. Scoping at that point revealed erosive esophagitis and more meds were started.

Around that same time Alex had a big weight gain, about 40lbs. in 3 months. After an afternoon chatting with friends I really started worrying about the weight gain. They knew how active Alex was and how little she ate, as well as how much I worry about my kids eating healthy. They pointed out to me that this just wasn't normal. I came home and 'googled' "unexplained weight gain". That was when I first learned about Cushing's Syndrome. Way back then I said to Brian "I would literally bet my life that this is what Alex has".

Off we went, back to the pediatrician, begging for a referral to an endocrinologist. No problem, but he was certain it couldn't be Cushing's, it's too rare. He ran the "gold standard" test for diagnosis, a 24 hour urine cortisol. It came back normal and he felt comfortable telling us she didn't have Cushing's, she was probably just unlucky and had a poor metabolism. Back and forth on this we went for a few years. He ran the same test yearly and it revealed nothing. He sent us to "healthy lifestyle classes", what a joke. By that time Alex could have been teaching the healthy lifestyle classes. At 10 or 12 she was learning calorie counts and reading fat content on everything she ate. The weight continued to accumulate even on low calorie diets. At one point she ate 1000 to 1500 calories a day, was exercising and still averaged a pound a week weight gain over 2 months of dieting.

Thank goodness for our great pediatrician who believed us! She used an analogy many Cushing's patients hate to hear, but for us it was reversed. In med school docs are told "if you hear hoof beats in Central Park it's probably a horse, don't look for zebras". Dr. Leong shared this analogy with us and then stated, "You are a zebra! And we are going to get this figured out." This was followed by more neurologists, more endocrinologists, two opthamologists, an OB/GYN, a psychologist, a hematologist, an acupuncturist, a chiropractor, biofeedback, pharmaceuticals, MRI's, CT's, ultrasounds, blood draws, urine collections, saliva collections, need I continue?

By the time Alex was 12 or 13 she was sick enough that she was unable to attend school on a regular basis. The headaches and GI issues were incapacitating and she had also started having vision problems, dizzy spells and "hot flashes". The school district put her on home/hospital stay and a tutor came to the house to work with her when she was able. At times the illness would seem to go in to a remission and Alex would return to school for brief stints with her peers.

In the spring of 2007 Alex saw an endocrinology "fellow" at Stanford University. As a last ditch effort before leaving, dismissed yet again, I pulled out my "before and after" pictures. We watched as the doctors chin dropped and she began back peddling. She suggested further testing for Cyclic Cushing's might be in order.

With her recommendation in hand I sent off an e-mail directly to the National Institutes of Health in Bethesda Maryland. To my complete and utter surprise I received a prompt response indicating they were willing to see Alex for evaluation. Of course there was a wait of 5 months before they could see her. Time crawled by as we waited and I put all my eggs in this basket. In November of 2007 we flew to Maryland for a week of inpatient evaluation. The experience was great, but once again we were sent away without a diagnosis.

With no where else to turn the next step for us was consulting the true wizards of pituitary surgery (Dr. Ian McCutcheon at MD Anderson Cancer Center in Texas) and Cyclic Cushing's (Dr. Theodore Friedman in Los Angeles). Dr. McC was ever so kind as to read Alex's MRI at no charge and give us his opinion and as far as Dr. F, well, out of pocket expenses skyrocketed, but what price can be placed on your child's health? Our last ditch efforts paid off and Alex was finally diagnosed!

Experimenting

2009-02-28T21:22:00.000-08:00

Well, lets see if I'm smart enough to add a photo! This is the kids at the vacation house on the Oregon Coast at Christmas. It took all of Alex's "spoons" to look picture perfect. She usually won't let us take her picture.

Too old to blog?

2009-02-28T19:07:00.000-08:00

This may be over my head, but I'm going to give it a shot. I'm a "hunt and peck" keyboarder and have no computer skills. I have a lot of thoughts bouncing around in my head and thought it might be good to put them down on "paper". Theoretically I plan to do most of my blogging about my daughter Alex, and the battle we have been fighting together to rid her permanently of Cushing's Disease.