Sunday, May 03, 2009

Prayers and expert help needed

Baby Faith -- who has survived just over teen weeks so far in spite of having anenecephay, is having health problems that have her doctors stumped:

Faith has been taking Prednisolone for about 6 weeks now for her respiratory problems. Recently we decided to try switching over to Pulmicort, since it is less harsh on the body. Now that we are trying to ween her off the Prednisolone, she isn't tolerating it --at all. She was having sever withdrawal symptoms when the oral steroid was reduced, even though she is also getting Pulmicort. Since she's been on the Prednisolone for so long, she is obviously quite dependent on it and is no longer producing her own corticosteroids. Now, to further complicate things... Faith theoretically doesn't have a hypothalamus or a pituitary gland, which are responsible for telling the adrenal glands to produce these steroids naturally (if I am correct). So in theory... unless there is something I'm missing... Faith has never been producing her own steroids to begin with. If we think back to our near-death experience when Faith's tube feed was first put in (day 25), mom and I are now seeing that the symptoms Faith had at that time (loss of weight, muscle wasting, muscle weakness, failure to thrive, etc.) may have actually been adrenal insufficiency. It was also around this time that her frequent vomiting and lung inflammation started, which could have been more signs of adrenal insufficiency. All that being said... I am wondering what kind of steroid supplementation a baby like Faith would benefit from, given her unique condition and her medical history. Since all this is way over my head, it would be helpful to get an opinion from an expert in this sort of thing.

Pass this plea for help along to the medical professionals you know and if ANYBODY has any constructive ideas, please let me know and I will pass it along to Myah. This might be a good situation for a pediatric neurologist or endecronologist who wants to break new ground. This will mean a lot for this family, and for future families with similar challenges.


Purple Envelope Project said...

My son has two endocrinologists. I'll give you both of their names. They're in Texas, but they might know of someone in her area or be willing to travel.

The first is Dr. Thornton at Cook Children's. He is the medical director of endocrinology and diabetes there. Here's his contact info:

I really, really liked Dr. Thornton. When we moved to Austin he recommended Dr. Schneier. She's really great too. Here's her contact info:

I know they're really far away, but I've had very good experiences with them both. It's worth a phone call!

GrannyGrump said...

Thanx! I'll forward this to Myah.

Evan said...

I will spread it and Keep the both thumbs up for you.
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