[1shortmomma]

He said that Paige has microcephaly. They are saying it developed around 4 months old as that is when her head growth slowed and now has stopped. They are going to do a head CT. I had thought that was going to be today but I guess not. I have to call and schedule it. That will show them more about what is going on with her brain. They also ordered a bunch more blood tests and recommended she see a endocrinologist and a geneticist. He is also going to follow up in 1-2 months once all her test results are in. He said that she seems to be caught up developmentally but is concerned that she may have future delays since she did a lot of stuff like sitting and crawling late. He did say though that it is great that she has gone through a big spurt of all the sudden doing things within the last month so it is possible she will continue to develop on time.

Here is a website if you want to read more...
http://www.ninds.nih.gov/disorders/m...crocephaly.htm

[Lisa N]

HUGS, hon. I hate that they have to do more testing but at least it wasn't all bad news. Sorry you didn't get a little more info. I HATE the waiting game. We'll be thinking of you, please let us know when her tests are etc. That link didn't have any info (for me at least) but I'm gonna do a search.

[1shortmomma]

ooppps.....

Corrected link...
microcephaly

[glasscandie]

I'm sorry that that's the diagnosis that you got for Paige, but from what I was reading, it seems that most kids have a normal life expectency, and a normal life in general. So that's great! It's seems like Paige is along those lines, if she's hitting milestones. Would that have contributed to her FTT at all?

How are you feeling about the diagnosis? It's probably a lot to take in; I remember when we got the diagnosis for Netherton's Syndrome, I was pretty devestated, even though I had an idea months beforehand that that was what the issue was.

[1shortmomma]

Would that have contributed to her FTT at all?

How are you feeling about the diagnosis? It's probably a lot to take in; I remember when we got the diagnosis for Netherton's Syndrome, I was pretty devestated, even though I had an idea months beforehand that that was what the issue was.[/b]

Yes it could be contributing to her FTT. Most kids with Microcephaly are small and have low weight and little weight gain. Also most have low birth weights...Paige was 5lbs 5oz even though she was born at 37weeks 5 days. Also most kids are very active...she doesn't quit moving.

The diagnosis seems to make sense and seems to be what has cause a lot of her problems (she has hypothyroidism). We won't know for sure until we get the results of the CT but they think that the part of her brain that controls the thyroid hormone is either not formed correctly or damaged in some way.