My son started off seeming so normal, even advanced in some things. Then as only time showed us, our son began having problems actually meeting his gross motor skills. Fine motor skills were super advanced. They diagnosed my son with spastic diplegic cerebral palsy. My son also didn’t each much and weighed 30 lbs at 6 months old. He is now 3 and weighs 55 lbs. His hands seem almost like he is retaining water. His cognitive skills however are incredibly advanced. At the age of 2 and 1/2 he could spell his first name, knew all his letters, colors, shapes (including hexagon and octogon). He is currently working on addition and subtraction, as well as the blending phonics sounds. Our biggest problems right now seem to be his weight (He is on a restricted diet of 600 calories a day, only eats healthy food, and only drinks water), his spasticity (botox and baclofen are ok, but are not enough to control it), and lastly for some reason his legs turn inwards only from the knees down. He is within the normal range of talking for boys, but it is the lower end of the range, but he seems to talk a little more each day! I am just wondering if any other parents have a problem with excess weight and any similar issues with the legs! I really believe if we can find out what is causing the weight issue and if we can get rid of the spasticity through an SDR surgery followed by an orthopaedic surgery to correct the twisting of his bones, that my son will be an incredibly intelligent normal little boy! I am just looking for some advice on what we should look into and if there are any similar stories of hope.
Tracy,
I’m sorry I don’t have any answers for you about your son’s weight, but I would like to share some of our story with you.
My daughter started out well too, with some little quirks (eye problems, feeding issues). She spoke at 9 months, spelled (and had all the preschool skills you mention) at 2, started writing at 3 and reading (books) at 4. She was completely self taught–we didn’t work with her at all, but did answer her questions. (And we own tons of books and limited TV to Sesame Street.) Her academic problems didn’t show up until second grade; in first she scored in the 99th percentile on testing, but asked many, many questions of the tester (allowed). Because she had such wonderful skills in some areas, her disabilities were not detectable by the school systems, slthough she struggled mightily in middle and high school. She, her dad, and I worked very hard for six years, and she graduated with honors, but without understanding of some of her classes due to her disabilities–mostly comprehension. (We got her diagnosis-- septopreoptic holoprosencephaly and P-ACC–at age 17 and an IEP in place in time for her graduation!) N0w she attends community college, where she takes a mix of regular and remedial classes, as well as one designed for students with disabilities. She finally gets some extra help there.
I tell you all this not to upset you or imply that you face the same problems we did (I’m reallly hoping you will not), but just so you can keep an eye out for subtle signs of problems in the future. When your son is old enough (usually about 6 or 7, depending on the practioner) I suggest having a neuropsychological evaluation with someone who has experience with young children. This was enormously helpful to us and has been to many others who have ACC as well.
Also, I suggest you join the ACC listserv out of U Maine. There are lots of parents there who have a great deal of varied experience and advice, along with a number of adults with ACC themselves. I know of at least one family dealing with the weight/growth issue. Here is a link to get you started:
http://www.umaine.edu/edhd/research/acc/networking-opportunities/
Best of luck to you and your little boy.
We are very fortunate that our son has no other anomalies besides the P-ACC and spasticity. I appreciate the heads up, because the more we can stay on top of it, the better his chances are. I am sorry to hear about your difficulties and am always open to hear about other children and where they struggled. This enables me to do my best to stress certain things in the home in order to benefit him. I really appreciate the link as well. We hope as well we will not face those difficulties, but the reality is we most likely will. I hear a lot about middle and highschool struggles, and it prepares me to know what we are in for! Thanks again for the info!!