Thursday, August 21, 2008

No News = Good News

At least that is what I've been told....Let me start at the beginning of our day yesterday

We took Zach to see the endocrinologist first. The Dr hadn't even seen the test result which is what brought us to him in the first place. Evidently our pediatrician had forgot to send them - I think that was a crock - I think the endo's office misplaced them, or he was too lazy to look.

He told us because Zach is having "some" growth so he isn't sure Zach really has a hormone deficiency - yet, remember I said --- he hadn't even seen the test.

The Dr made me feel like we had been every where else looking for answers - sure why not come to me, yet I'll give you none - he pretty much said this.

Zach's original IGF was low, yet the endocrinologist didn't see this and I was livid with myself because I didn't bring my big book of medical information I've been keeping because of the storm (I plum forgot). The endocrinologist is running the test over since it had been a while and is also running another more comprehensive study to go with it. The Dr told us he would call if something was off and have Zach seen sooner. If all is normal he will see Zachary in 6 months, just to check on how he is growing, if all is fine at that point there will be no need to see him again. Okay fine I can live with that - no news = good news.

Next Zach saw the geneticist....

I know this is great news - all the tests came back normal, no genetic disorders found!

Yes, this is wonderful news but as the Dr put it, it is also very frustrating news.

It is good news, meaning, there is "hope" Zach will overcome a lot if not all of his slow developmental problems, growth, and all.

It is frustrating news because Zach has so many little issues or signs that would point anyone in the direction of a genetic disorder - yet nothing came up.

An example - the Dr took a couple of minutes and just looked at Zachary's palms - it was a big enough deal she had another Dr who was doing rotations with her look too. Zach has something called a Palmer crease - she said this is a sign that can lead Drs to a genetic disorder BUT it can occur in 3% of the population who don't have a genetic disorder (in one hand) in both hands 1% - she is thinking Zach may just be that 1%, because the first sets of tests came back clear, but can't say for sure.

For right now she didn't want Zach to undergo any more testing. She wants to see him in 6 months, sooner if anything gets worse.

She does want him in PT ASAP - Zach is starting to walk with his feet turned in and the Dr thinks that PT will help. Zach has such poor muscle tone the PT will help with that.

She was also very happy we were getting in to see the developmental pediatrician. She reminded me how hard is is to get into and Zach got in VERY fast in comparison to other children (3mts it took - compared to 12mts) She wants the DP to call her and discuss Zachary. It is nice to know she wants to work closely on this.

After the Drs appointments was Zachary's OT and ST sessions. They went okay. Ms. Jerry did hear back from Early Steps and was told yet another form needed to be filled out before they would give the okay for a PT Evaluation to be done. Our therapy place doesn't think they will deny Zach PT, as he needs it so badly and if need be we have the backing of many Drs. So Zach is all set up for his evaluation on Tuesday.

No News = Good News at least for the time being.

No comments: