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View Full Version : Hi from Kansas


kirsten
11-07-2006, 12:25 PM
Just wanted to post a quick hello/intro! I have three kids the first two are perfectly "normal" my youngest however was a 29.5 wkr he has some issues but the reason I am here is I wanted to know if anyone knows what thinning of the white matter means and why it happens? The Neuro says he was probably born that way and it may be common in kids with the genetic syndrome he has. Anyway dh talked with the Neuro when he called yesterday he said its not life threatening but will affect his development he is severly MR/DD. Anyway I was just hoping someone could help sorry if I dont explain well my brain moves faster than my fingers lol thanks for letting me join.

kirsten
11-07-2006, 12:38 PM
I forgot to add that my son also has Cardiofaciocutaneous Syndrome, CP,CHD,brain and kidney cysts and slight hydrocephalus no shunt tho and is strictly gtube fed. etc. etc. I was interested in finding out if there were others here that had CFC Syndrome? It is fairly rare when we found out he had it there were 50 known cases in the U.S.

MaryEvelyn
11-07-2006, 05:53 PM
http://brain.hastypastry.net/forums/forumdisplay.php?s=&daysprune=-1&f=115

Check out Child Nero there are some realy nice people there.

Boopers
11-09-2006, 08:21 PM
Hi Kirsten,

Welcome and good luck!!

Take care,
Linda :)