Genetic links


#1

I have never heard of c-acc or p-acc. I have 2 boys both diagnosed with ACC. They are 4 and 1 yrs old. The younger one is already developmentally ahead of the 4 yr old. My husband and I were encouraged to have more children, believing that our first born was just a fluke of nature. When my 2nd child was diagnosed at 22 weeks inuteral, we were devasted. They still have not found a genetic link, which it must be since I have 2. The only think they have been able to rule out is the x-link issue. I am new to this website and have never even tried to become part of a support group before. Any one with any information, including how to get more therapy for our children please let me know.


#2

Hello. P-ACC is partial agen. of corp. coll. and C-ACC is complete agen. of corp. coll.

I know that if a child has certain syndromes along with the diagnosis of ACC that those syndromes are genetic because they affect the chromosomes. Have you had any chromosomal genetic testing done? My daughter’s chromosomes are normal, we had blood work taken to see her chromosomal make up. As you are, I am afraid to have more children, there is so much info. that is not known at this time and it is so frustrating. I keep asking is the ACC genetic or is it just the chromosomal syndromes or both?

As for services, your county should offer free services based on just the diagnosis of ACC. We get governmental services through our county. Contact your neurologist for this info and see who does it in your county and state. We live in NC and go to the Watkins Institute. They provide every service they believe your child needs. Hope this helps! You are in my prayers.

God Bless,

Jess

To: jessicarainstein@hotmail.com
From: agenesiscc-cpt8529@lists.careplace.com
Subject: [agenesiscc] Genetic links
Date: Sat, 12 Apr 2008 10:05:24 -0400


#3

Thanks Jess for the information. The biggest problem I am having in the state of Florida is that I make too much money. Everything is income based. I am on a med waiver list that is not income based, but that can take upto 7 yrs and I can’t even put my youngest on until he’s 3 yrs old. I have applied for every possible program that has been sent my way and keep getting turned down.


#4

That is a shame. Keep trying and hopefully something will come through. Ours is based on income too but income only comes into play for certain things. Play therapy services are free regardless of our income but PT is a portion of our insurance copay. Your center does not work that way? Is it a gov’t center?

Jess

To: jessicarainstein@hotmail.com
From: agenesiscc-cpt8529@lists.careplace.com
Subject: Re: [agenesiscc] Genetic links
Date: Tue, 15 Apr 2008 21:15:50 -0400


#5

I work for the county. So I have so, so insurance. It’s good for some things and not so good for others. I can only get therapy fo traumatic reasons. They do not cover PT and OTfor mental issues. There are so many things that I am fighting for that sometimes I forget which front I’m fighting for now. Equipment has been my #1 concern. I’m still waiting on a wheelchair since November 2006. The funny part is that my insurance does cover it, but only in network, and I went through literally 20 different companies before I was able to find a company that did custom made wheelchairs on United’s list. I’m not trying to get a stander for J.T. Work is trying to give me a couple of places where I can possibly purchase a used one.


#6

I will be away from Dayton Children’s until Tuesday, April 22. Please
contact Tami Wiggins for urgent issues at ext. 4214. Thank you. Jodi

agenesiscc-cpt8529 04/18/08 02:36 >>>


#7

It can be so frustrating at times. Just keep plugging away and hopefully you will be rewarded.

To: jessicarainstein@hotmail.com
From: agenesiscc-cpt8529@lists.careplace.com
Subject: Re: [agenesiscc] Genetic links
Date: Fri, 18 Apr 2008 02:36:42 -0400