Latest on Isaac..vent?..kinda??...sorry so long

[Guest guest]

Hi all-

Been a while since I posted. WE had our follow up visit with the

geneticist last month and she agreed with Dr.H's diagnosis of RSS

but she did say that she didn't think Isaac was at risk for

hypoglocemia and the only way to tell would be a fast through the

night and then take his glucose. I know for a fact that this doc has

at least one other patient with RSS that is a member of MAGIC so I

assume she has talked with Dr. H..maybe? She also said that GHT

doesn't always work with RSS/SGA kids as she has seen many that had

poor results. I told her that I had tons of data (compliments of Jen

Salem..Thx..I owe u one but she said there hasn't been

inconclusive blah blah blah. I was kind of discouraged because of

her different views on our kids. One would think that she would know

RSS kids are at risk for Hypoglocemia.

On a good note- visited the endo and Isaac's TSH and T-4 levels are

good and he has gained 11 oz & 3/4 " in a month!!! YEAH! We don't

have to do blood work again until december but he is scheduled for a

flu shot next week I did ask the endo about bone scan and she

said they don't usually do it until they reach 2 years of age. Any

one had it done earlier? Just curious. She also told me that RSS is

not an automatic " qualification " for growth hormone therapy. THere

has to be SGA/ failure to thrive or GH deficency.

I gotta go wake him up to eat..Oct. 19th he will be 9 mos and then

we can start adding cornstarch to the last bottle..I am counting the

days !!<wink>

Mimi

Mom to Isaac (RSS, hypothyroidism, almost 9 mos, 11 lbs, 15 oz

24 1/4 " long)

P.S.- Sorry for the awful spelling..my eyes are getting heavy.