Today was our first appointment with Dr. Hunt, she is going to be princess' GI specialist. The doctor checked her out a little and asked a few questions. Here is what we are looking at now:
1. Cystic Fibrosis, princess has many symptoms of this, however she also has a few that are not symptoms of this. Such as the not wanting to eat much. The test for this is a sweat test, which was scheduled and done today. the results will be available either tomorrow afternoon, or Thursday.
2. Celiac Disease, princess also has many symptoms of this, the test for this is blood work and we are waiting on some of that to come in possible tomorrow, and more next week.
3. A heart problem, possibly a murmur. The doctor heard something irregular today and wants it to be checked out further. She will need an echocardiograhm, I'm not sure on that date yet.
4. A thyroid problem. The reason for this test is because she is cold and has pretty much no energy 75% of the time. That is also blood work and should be in next week.
So now we wait again....This is the worst part for me, princess still doesn't have any clue what all is going on, all she knows is that she is shuffled from doctor to doctor. She is doing great with it and is better at getting blood drawn now than I am, when they took her blood today she didn't flinch, cry, or anything. The doctor said she is very concerned about her because she is severely under nourished. I kept thinking, yeah I've been saying this for a while now, I've know something is wrong in my gut but no one seemed to listen until moving here. Same with the speech, I tried for three years to get her help with that, and was pretty much told she was dumb by doctors in Alabama. Come to find out she is very smart, and DOES have a speech problem. I've also learned that the sweat test and biopsy done by the GI doctor there at 16 months, was inaccurate. Because she was too young at that time. I'm fed up with the doctors in Alabama and pretty much starting from scratch here. Luckily they are working for princess and seem to be much more aware of whats going on. I'll post as I get more information.
1 comments:
Our prayers are with you and your family!!
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