Since the last episode, we have had another visit with her Gastroenterologist. We reviewed the biopsy results, and I'm sorry to report that they aren't any better. They aren't much worse, either. The number of eosinophils is certainly elevated above the accepted number (24 per microscopic field view, hers are up to 50 in several different areas of the lower GI, absolutely ZERO in the esophogus and stomach!!) We kept her on the budesonide, but are not seeing results. We are still getting some wicked diapers. We haven't talked about Cincinnatti Childrens, but I feel it coming and I'm ready. Cincinnatti is the eosinophilic Mecca. It is to the gut what National Jewish (in Colorado) is to skin and lungs. There was the suggestion of an immunosuppressant called 6MP (6 mercaptopurine, if you wish to google) that was also brought up. The reasons get too complicated for my tired brain to explain at the moment, but I can see why it was suggested seeing as her immune system is overactive. However, I am in very few ways a fan of this idea. It's normally used for leukemia patients and in some cases of IBS but I would go to Cincinnatti before I put her on that stuff; the side effects seem to be precisely what we are trying to get away from.
On to the consult with her Endocrinologist! She didn't have many concerns. Her view on Mia's small size is that A) Neither of her parents are very big and B) she has been on steroids, which do lead to growth problems. The doctor said she does deserve to have the basic workup, checking hormone levels and other endocrinology type things. I have to admit I'm not as educated in this particular branch of medicine.
Then there was her appointment with the new dermatologist on Post, whom I happen to like. I liked the previous derm, but she moved to a new duty station. She was a good combination of conservative and out of the box. She wouldn't get prescription-happy, but helped us out by looking for various deficiencies when we were intitially hospitalized for FTT. The new doc didn't have much to add except upping her dose of Atarax to keep the itching down, and she prescribed some lotions and ointments to try. We're pretty much an "on call" type patient at the base clinics. All I have to do is say the child sneezed and they practically offer to pick us up. They've spoiled us; I doubt the next duty station will be so attentive. Elmendorf has followed her since birth, they saw the progression. It will be interesting.
And now for the pictures!
The box for the tree is MUCH more fun than the tree itself!
Mia takes decorating into her own hands! She has her own ideas about where things should go. There are clusters of ornaments and gaps elsewhere but I don't want to change her handiwork!
We have to redecorate parts of the tree daily. It's just too enticing to leave alone despite the "no touch" rule. She is very gentle and seems to understand that some things need to be handled with care. She waddles up to me holding an ornament and a hook and says, "OH NO HANGER!!"
1 comment:
Fun pix! I am so glad that you are getting good help with Mia's health. It was so good to see you guys and we are definitely going to have to get back together soon. We'll see you after Christmas. Make it a good one!
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