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angelique5 02-08-2006 05:42 PM

Son with Mosaic Down Syndrome
 
Hi all..new to the boards, just thought I'd introduce myself... my name is Angel, and I'm from southern California... my husband and I have 6 children...

My son Jared is 13 now, and he has Mosaic Down Syndrome, and a bowel disease called Hirschsprung's Disease... as well as ADD, which was diagnosed in the past couple years.

Look forward to your posts!

mica1 03-09-2006 03:13 AM

Re: Son with Mosaic Down Syndrome
 
thankyou for writing to me i hope all goes well for your son im praying for him :angel:

thea 03-21-2006 02:08 PM

Re: Son with Mosaic Down Syndrome
 
Hi everyone I'm new...but I'vv been reading alot of your postings which has helped me the past 11 months . I have a handsome little boy born last april name Anthony I love him to bits.Anthony was diagnosed after birth with DS it was tough but we are getting there. He is a very determined little boy he has just mastered his crawling,he is a very happy baby...With no family around I try to stay as positive as i can and treat him the same as his 2 sisters no different and it seems to work for us.....I just want to say thanks and hope someone replies.

angleeyes4450 05-30-2006 07:30 AM

Re: Son with Mosaic Down Syndrome
 
I would like to say I have a daughter with mosaic downs and she is 17 now. My husband and I have always treated her the same as our other 2 children 19,12 and also my family treats her the same I would have it no other way, if I seen or heard of one doing any different I would put a stop to it, and explain why. She is very independent, smart, and a very hard worker just wanting to learn as much as she can. I think with us bringing her up like she has no disibility at all has made her what she is today. So my advice I give to all parents with ds kids is to treat them like there is nothing wrong and they will be able to do so much more than letting them realize that something is wrong with them and they cant do certain things in life


Thanks :angel:

angelique5 05-30-2006 01:18 PM

Re: Son with Mosaic Down Syndrome
 
If youre interested...there is a group called the International Mosaic Down Syndrome Association... we have a yahoo egroup... quite a few families with MDS....

Angel

sandygriffin74 09-25-2007 01:42 PM

Re: Son with Mosaic Down Syndrome
 
my son is not mosaic he is trisomy but he was also born with hirschsprungs disease. he is 12 now and still not potty trained. the doctors said that he would never have bowel control. i am hoping to prove them wrong but so far had no luck. he is getting bigger now and the rash is getting worse it takes 2 people to change him and i dont see any end to this. any suggestions about potty training? the doctors said that he would never do so much that he is doing now i dont want to give up on this.

ktanner4 11-30-2007 01:19 PM

Re: Son with Mosaic Down Syndrome
 
I have an almost 4 year old boy with Down's syndrome and at one point they also thought he had Hirschsprung's... they did a barium enema and said that he definately had it and they were going to do surgery for it, and then one of the doctors was like "well we may as well do a biopsy first" so they did and it turned out he didnt have it! I'm thinking it must be faily common with Down's though.

creativekids 09-22-2010 12:40 PM

Re: Son with Mosaic Down Syndrome
 
[QUOTE=sandygriffin74;3226281]my son is not mosaic he is trisomy but he was also born with hirschsprungs disease. he is 12 now and still not potty trained. the doctors said that he would never have bowel control. i am hoping to prove them wrong but so far had no luck. he is getting bigger now and the rash is getting worse it takes 2 people to change him and i dont see any end to this. any suggestions about potty training? the doctors said that he would never do so much that he is doing now i dont want to give up on this.[/QUOTE]

I know this is 3 years later, but how is your son doing? My son is 5 years old with DS and was told he probablly wouldn't be potty trained as well. It was recommended that we get the ACE Malone procedure done for him but we are still waiting for that miracle drug or food that will firm his bowels up enough in order for him to potty train.

would love to hear your experiences. Thanks! Rene


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