Why does it seem that every doctor I talk to, tells me that I have to wait and see?


#1

I posted a while back about my newborn son, having ACC. I guess I would consider him lucky, he has nothing else that goes along with it. I have taken him to eye doctors, neurologists, gastro-intestinal doctors… They all tell me that there is no way to tell how bad he will be effected by this condition, until a problem arises. I tried to get my son into early intervention to prevent as many problems as I can, yet they won’t take him, because he isn’t as bad as the other children. He is on the heavy side. Right now at 9 months, he can sit up, roll over to one side, say dada, and he strugles holding his own bottle. They say that they can’t tell if it is his condition slowing him down or his weight. Then I told the doctors, my son doesn’t eat much at all. Maybe 1/4 cup total of baby food a day, and 24 ounces of formula. I give him the Enfamil Lipil, because it has so much DHA, and the DHA Rice and Oatmeal. I love him, and want to give him what is best. I am tired of getting pushed to the side. I shouldn’t have to wait to find out that my son has a problem. I should be able to prevent it as much as possible. I was just wondering if anyone has any advice? I treat him just like a normal little boy. In the back of my mind though… I know that he is different from all of the other kids… and I wonder if he will ever speak in sentences, if he’ll ever walk, if he will ever have the coordination to play sports with other kids. It is just so hard to sit back and wait for the worst. I want to be proactive and do everything I can. Please, all advice is welcome.


#2

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Director of Field Operations =20
Thank you,
David Beal

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#3

I’m really sorry for the push off, but that seems to be what all docotrs tell us… some people function fine without it and other don’t… with you saying he doesn’t have a vision problem or anything i think there alot of hope. my daughter had alot of issues. she is blind, has hearing loss, eat’s like a pig but is at moderate rate, she is 15 months old and doesn’t sit up or even roll. it’s very hard because she is always sick, and the doctors tell me it will pass and not to worry but how can i not?? I know what your going through and yes it is hard but all you can do is wait, part of the reason they tell you they don’t know is becausr not one child is alike with this disorder, every child reacts different. I would start your son on thearpy and that can help alot,and good luck…


#4

My daughter Madeline is almost 6 months old and she is having hard time with her arm muscles but she is also developing fine. Maddie has  issolated ACC and hydrosypholis. So far she is a very normal baby but the waiting game is hard. My husband thinks she will just have learning problems when she gets to school but I don’t know. The wait is horrible but you have to foccus on what your son is able to accomplish today. He sounds like he is doing great. Don’t give up hope because no matter what you won’t love him any less.


#5

Hi,

Your daughter Madeline is still very young to tell how the agenesis of the =
corpus callosum and hydrocephalus will affect her in her in the future. My =
daughter Brianna (now 21 months old) was diagnosed with agenesis of the cor=
pus callosum at 6 months of age and at that time she seemed like a developm=
entally normal child, then she hit 10 months and wasn’t sitting or crawling=
… finally sat unassisted at 12 months and now at 21 months is starting to=
combat crawl (crawling with hands and belly instead of on knees) we hope s=
he starts crawling soon, and walking? Well that will be our next goal to wo=
rk on maybe after she turns 2 (so yeah not walking at 21 months yet). As a =
child with ACC gets older some thins become more apparent and obvious when =
they don’t meet the big mildstones such as rolling over, sitting, crawling,=
walking etc at “their so called times”. Our kids will do all of this at th=
eir own phase time:) Hope all the best for Madeline hope she beats all the =
odds and amazes doctors and everyone else who ever doubts :)=20

My daughter Brianna, has had three surgeries in her short life one at 5 1/2=
second one at 6 months old, and the last at 11 months old. She has a genet=
ic chromosomal abnormality GERD feeding tube dependant intestinal malrotati=
on, central and obstructive apnea, aspiration dyspaghia, and more but is th=
e happiest jumpiest smiley baby with great motivation and will to do all th=
at she can.=20

Araceli in California
Mommy to Brianna with Complete ACC