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Preston and I went to Austin for his genetic doctor appointment. At our first appointment about 4 months ago she states she wanted to get the results of all the blood work and the birth records. We did a little bit of blood work and also a bone age scan. At our second appointment she had received all the results and birth records. She went over the results and there were some abnormalities with them. We redoing some of the test to see if the results remain the same or changes and there are some test she said she will not redo since the results shouldnít change much. The bone age scan also showed his bones are younger than his age so we have to keep an eye on this. It could be nothing or it could be something else requiring more treatment.
One of the protocols for hemihyperplasia it to have abdominal ultrasound until age 7 and AFP done every 3 months until age 4 to screen for abnormality or tumors. I have to get his doctor to order these test since this doctor isnít in SA and canít request them in SA. This will save me a 2 hour drive just to get test done. Iím waiting to hear back from his doctor so I can get these tests done.
We see 4 different doctors so right now it is just nuts: The genetic, ortho, endo and his pedi. Iím hoping we donít need to add to this list. The genetic doctor wanted us to meet with a nutritionist but I have talked with daycare and he eats everything the offer so I am going to work at home to get him eating more to see if this helps him. She was worried because I told her Preston is a picky eater and since he isnít growing much she thought it may help. Now I know he eats well at daycare Iím not as worried about the eating issue.
Preston did great with the drive and the blood work. I do like this doctor better than the one in San Antonio. His old doctor was older and didn't believe in doing all these test. I felt his appointments were pointless and nothing was done or reviewed with me. He didn't even look into other options and never really talked about the blood work even when I asked about them. He always went off into a different direction. He was also hard of hearing and had the nurses helping him out a lot. Glad we change doctors.
Glad to hear you're happy with the new doctor. Have they spoken to you about any treatments yet or is he just being closely monitored? I have more doctors than I can count and I know how much it sucks to go to appointment after appointment and test after test and I can only imagine how much worse it must feel to a little one, but it sounds like Preston is taking it all well.
Thanks for the update! What kind of treatments can they offer for his growth and leg issues in the long run? Do you know how long it will be a 'wait and see' versus some action? Would it be more dietary supplements or growth hormones? I am very happy you are content with your decision regarding care and I admire your ability to handle the drive and all the appointments. Preston sounds like a great kid.
Right now they are monitoring him before proceeding with any type of treatment.
The leg being shorter is just being monitor right now. It is currently at 1in difference and they expect it to get worse as he grows. I believe between 10-12 years old, he will need leg lengthening done. This is where they break the bone and let it grow and keep stretching it out until it reaches the desire length.
With his growth, he may need growth hormones. We are doing some genetic testing which is just blood work and we believe that will not be an issue.
For the growth hormones we have to do a growth hormones test done to check his growth hormones. At his last endo appointment, she was okay with not doing it yet. This test is a few hours long and he has to be hooked up with IV’s. At our next appointment in May, w are going to review how much he grows and then decide if we want to do it. I’m sure we will do it eventually but with him only being 3 and sitting for so long for only the test, I just don’t want to put him through it yet. The test doesn’t look fun. The doctor said waiting a little bit longer, since he is so young, isn’t going to hurt this growth any.