Got a question for you

iVillage Member
Registered: 05-16-2006
Got a question for you
12
Wed, 06-14-2006 - 8:35pm

Did anyone here get their child tested for fragil x?
We did Adam's blood test last week. I called in today for the results and they won't be back for 3 more weeks????
Something like the test takes 2 weeks to conduct in lab and it took a week to reach the lab out of state.

My child isn't even 3 yet and it was painful for me and his dad putting him through it.
NOW I still have mental anguish!

Second question:

After your child was diagnosed, we're you hesitant on have another child for fear of this happening all over again.
I want another baby and my DH is scared to death! He'll do it for me though and after we get the blood test back (it'll be negative I'm sure) for fragil x I need to make my decision if Adam is gonna be our only child. (I sad if it happens that way)
Heck I'd love to adopt, I just want someone for my child to grow up with.

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iVillage Member
Registered: 03-26-2003
Wed, 06-14-2006 - 9:17pm

Actually I don't think we did with the older 2. Is possible it was in with some of the tests. I did do it with Dave only because we were doing blood tests for other things at the same time. It was negative. It often is. Waiting for any results is really hard. EEG's take a while and I hated that. I could see the darn lines moving during the test but had to wait 2 weeks to hear the results.

hmmm, your second question is a loaded one but a frequent one many have asked. It really comes down to it is a personal decision. The risks are higher of having a second child with ASD. Instead of 1/166 it is like now 1/10 and if you have 2 it moves to 1/3 so you do need to take that into account.

However, let me say that I have 2 with definite ASD, one who had vision troubles is gifted but may have a small bit of an LD, and one who has had a PDD-NOS and SID diagnosis. Bipolar has also been flirted with.

I wouldn't trade any of them. It is hard to watch your kids struggle but you just love them to death. I am SOOOO glad I have 4 kids. I would have had one or 2 more, DH was definitely done. They have the best time together. They have been the best therapy for each other. They have each other and they love it that way. My house can be alot of fun.

Don't get me wrong, it is a Heck of a lot of work and heart ache having multiple SN kids and sure I would have loved to have 4-6 easy NT kids but that wasn't in the cards for me. But I do have 4 awesome kids.

Renee

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iVillage Member
Registered: 05-16-2006
Wed, 06-14-2006 - 9:48pm

Well if the odds are against us again it's not like we don't know what we are doing right.
I wouldn't trade my Adam for nothing. He is my world. We're buddies and he needs me. I stay home so that helps him mentally I'm sure.
We'll we will go forward with our decisions after the results are in. If it's possitive its a 50% chance it'll happen again, and then I'll adopt.
Oddly I heard the odds are 1/50 if you already have a child with ASD.
I guess at the end of the day, it's what it is.

Thanks
Nora

iVillage Member
Registered: 02-20-2001
Wed, 06-14-2006 - 9:57pm

Nora,


We had fragile X done for Bobby, but he was also getting an EEG and MRI.

 


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iVillage Member
Registered: 05-16-2006
Wed, 06-14-2006 - 10:08pm

That's my Adam. He's quirks make him. We have not told alot of our family due to the "are you sure question". We deal day to day and thank God he has speak and is more high functioning. He does his best at the playground and looks to me for help engaging in play with kids. He is the love of my life (besides DH)

Thanks for your reply. I got alot to think over and you are right it's a pesonal decision.
His BSC says he may even be mainstreams at his level and rate of sucess so far so I have hope. That's why I am reluctant to tell biased family members about his ordeal. They are so OLD School and just don't get it.

Thanks
nora

iVillage Member
Registered: 02-20-2001
Wed, 06-14-2006 - 10:25pm

We have been pretty lucky.

 


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iVillage Member
Registered: 06-25-2003
Wed, 06-14-2006 - 10:55pm

Hello and welcome!


We tested Peter for it. It took five grown women to hold down a 42 lb kid for the bloodwork; took two seperate visits and after all that: was negative. I can't remember how long the results took. At that point I was beyond caring... I just KNEW after all that they would be negative.

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 01-19-2005
Thu, 06-15-2006 - 6:56am

We did have Eric tested for Fragile X and a bunch of other things at the time of the initial diagnosis. Like another poster, he had to have an EEG too and they drew the blood while he was out. But getting him sedated for the EEG was a terrible experience! And in the end, everything was negative, but I guess it was good to check.

I know it is a personal and difficult questions about having a second child. But guess what? We adopted Eric at birth and he has ASD, so there is no way to know even if you are adopting. The birth mom did now know it was in her family, but after the fact, two of her other children were also dx'd after Eric was.

Nevertheless, as everyone else has said, I wouldn't have done anything differently. I had always wanted two children, but since we couldn't adopt Eric until we were older and we spent a lot of $$ on infertility treatment, adoption, and now ASD therapy we are probaboy not adopting another child for both financial and personal reasons. Every now and then I consider adopting an older child from foster care. We may actually do that. Eric often says he wants an older sibling, and I think we could do it now that we know more about the social services system.

If I were younger and could get pregnant though, I probably would risk it. I adore my little Eric and feel so blessed to have him. But I can really understand the dilemma.

Katherine

iVillage Member
Registered: 05-16-2006
Thu, 06-15-2006 - 3:47pm
I just got a call from my friend who's dd is 1 month younger than my ds. She is getting off the pill and trying for their 2nd. I am so heart sick right now I could barf. Me and dh got into the BIGGEST fight this morning over this very debate. I don't know what to do. He keeps telling me that this is up to me. How can I even try to make up my mind on this matter alone. I will be 32 this August and I don't want to wait anymore.
Call me bitter but when my friend tells me she's preggers I will be so heart broken.
I want to roll the dice. Hubby wants me to get a sperm doner? WTF? (sorry)
I don't know. Do I not tell him I'm off the pill and "suprise" him. I try to keep my marriage with out hidden agendas. He said he'd rather not know.
I am at a loss.
HELP!!!!!!!!!!!!!!!
iVillage Member
Registered: 06-25-2003
Thu, 06-15-2006 - 7:13pm

Forgive me for being so bold, but it sounds like your DH has some issues to address. Would he have a fit if you suggested

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-25-2003
Thu, 06-15-2006 - 11:36pm

We had Brennan tested for Fragile X and everything came back okay.

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