It's Been a Tough Week!

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...

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.