View Full Version : Multiple children with some type of disorder/deformity
c0urtnee
12-18-2006, 10:21 PM
I dont want this to be misinterpreted.
But i have noticed that quite a few of the parents in this forum have multiple children with special needs/or a defect of some sort. I see alot of autism. Please forgive me if this is a stupid question...but has it ever been said that you are more likely to have children with this or that once you have a child with craniosynostosis? My doctor is very nonchalant about the whole thing. He is there just for the surgery, and he wants to make sure of that. Has anyone volunteered to just have gene therapy done? Is this something you typically only have done if it is severe/certain case etc etc? It just seems that somehow the rate of autism in that child or another seems elevated. I could be wrong.
Thanks a ton!
Matthews Mommy
12-19-2006, 02:43 PM
I know for a fact that Autism is very likely hereditery in most cases, plus once you have one child with it your chances of having more autistic children increase. Matthew had cranio but has autism (Aspergers) because it runs in our family, I already had an older child with it. I do believe we need a lot more research in both areas, in some cases it seems autism is starting to come on the rise in craniokids. I met quite a few families at the hospitals that had kids that had both but there is no research to back up our questions.
Melissa
12-20-2006, 05:59 AM
I've never heard anything about it myself, but that doesn't mean that there's not a possibility. Neither of my guys has it...
snickers9246
12-20-2006, 06:23 AM
Same here, I've never heard of a link between Cranio and Autism. If you are worried, perhaps you should speak with your family Dr about being referred to a geneticist and having some tests done. I was made aware that Cranio can be either a fluke, "lightening strike chance" or genetic. we have no idea about our little one as Daddy was adopted. We're hoping it's a fluke as I'm due in March with another little peanut! :adore
MikenAustinsMommy
12-20-2006, 09:08 AM
In all the research I've done, I've never seen a link before either. I think that maybe you are seeing more kids with it because more children are being diagnosed with it than ever before. I saw a news special on it just last week that said the increase in recent years has been 35%.
Whenever I have a question about something medical... I always go to PubMed. They have a lot of published research studies.
My oldest doesn't have any "problems".... okay, maybe girl problems, hehe... and Austin doesn't show any signs of having different cognitive abilities.
Katie
12-20-2006, 10:24 AM
This is a good question, I've wondered about it on occasion myself and have done some research on it. I've not ever found any studies suggesting there is a link between autism and craniosynostosis. What I did find however, is that autism (http://www.autismspeaks.org/whatisit/index.php) has a rate as high as 1 in 166 people. Autism has become more of a publicly known disorder and is therefore being diagnosed more often and quicker than say 10 years ago. There may not be a direct link between the two, but with an instance of 1 in 2,000 for cranio and 1 in 166 for autism, I can see from a mathematical standpoint how a child could have both.
I would be interested in seeing a study conducted with this type of question, but outside of the hereditary link, the causes for craniosynostosis and autism aren't fully known which would make conclusive evidence difficult to find.
c0urtnee
12-21-2006, 07:00 AM
wow! thank you guys sooo much! I had no clue the numbers were that high. Like you said, back in high school i knew one person.... nows its everywhere. I thought it was rare.
thanks again!
oh and good luck snickers!
Melissa
12-21-2006, 08:45 AM
I think some of those new diagnoses may come from the fact that there are different forms of autism recognized now, too - different levels. Back when I was in school, only those with severe cases (the ones that screamed when touched, who were non-communicative, etc) were diagnosed as 'autistic'. Now they are diagnosing people who have mild cases, as well, so there are a ton of people being diagnosed now that wouldn't have been back when we were kids. My neighbor has a son who is considered to have Asperger's Syndrome, which she said they told her is a mild form of autism...I don't know how it is for other kids with that particular form, but back when I was a kid/teen, he would have not been diagnosed with anything and would have just been considered 'odd'. (Not trying to be offensive in any way, just stating how it would have been around here at that time.) Bryson is in class with a boy who has what I would consider a 'medium' case of autism - he doesn't like strangers and he has an aide during school hours, but he's super smart (top in all his classes last year, and probably this year so far, too) and functions fairly well as long as he knows what to expect and is with people he's comfortable with.
Matthews Mommy
01-24-2007, 11:57 PM
"Craniosynostosis"
From Terri Mauro,
Your Guide to Parenting Special Needs.
Definition:
Craniosynostosis is a birth defect in which the skull begins to close before the brain has finished growing. The brain then grows in areas where the skull has not closed, causing an oddly-shaped head. Craniosynostosis may involve one suture (the joint between the skull bones) in the skull closing, or multiple sutures. The shape of the head can generally be corrected with surgery in infancy, and other physical irregularities may be addressed with plastic surgery. Some children with craniosynostosis may have ongoing cognitive and sensory disabilities caused by pressure on the brain and face. Single-suture craniosynostosis may be classified as scaphocephaly, if the suture at the top of the head closes; trigonocephaly, if the fusion is in the forehead; synostic frontal plagiocephaly, if the closure is on one side of the head; and synostic posterior plagiocephaly, if it occurs on the back of the head. Types of multiple-suture craniosynostosis include Apert syndrome, Crouzon syndrome, Pfeiffer syndrome, Saethre-Chotzen syndrome, and Carpenter syndrome.
The article stated that some may have sensory disabilities etc. and Autism deals with sensory as well as many other aspects, but this is the only article I could find so far.
Found this article on Medscape:
A sister and a brother with anomalous skull configuration, facial abnormalities, abnormal scalp hair growth, sensorineural hearing loss and, in the boy, proven craniosynostosis, severe mental retardation, and autism were reported in 1986 in an abstract by Hersh et al. We reexamined this family and here review the literature focusing on the major clinical findings, and suggest that their clinical manifestations may represent a previously unreported syndrome
saraweise
01-26-2007, 11:59 PM
This discussion touches on my worst worries for Joseph today.
I cant explain it but sometimes his actions worry me.
At times he holds his hands on his ears though there is no audible loud noise. When I come home from work and smile at him (welcoming him) he becomes agitated and cries. He seems to behave better if I do not acknowledge him (sad! I just want to scoop him up!). When eating in his highchair with the rest of the family he will continue to eat and remain calm if no one looks at him. If he is misbehaving while down and around the house (touching something he should not be) and it told "no" (gently - not forcefully) he becomes hyper-agitated and throws whatever is in front of him (toys, food, etc).
Is this normal? Our daughter seems to easy compared to Joseph...this is a constant worry for us.
Matthews Mommy
01-27-2007, 12:03 PM
It is such a touchy situation with doctors because non-disabled toddlers have tantrums but I know from experience that if it is all the time or too frequent then it is time to express concern to a doctor.
Moms always have to go by their instincts if we constantly or strongly feel something should be checked then it does not hurt to ask, everything may be fine but we know we won't rest until we know for sure.
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