Thursday, December 31, 2009


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.

Wednesday, December 23, 2009

The GYN Appointment

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.

Saturday, December 19, 2009


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?

Wednesday, December 16, 2009

We Spoke with Dr. F.

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.

Monday, December 7, 2009

It's Been a While

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.