Arnold Chiari 1

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Since April 27,1998

Arnold Chiari 1

Ryan

Jaime King is Currently - - ICQ 9485173

Well, Here I am again pouring my heart out. My 6yr old son Ryan has Arnold Chiari 1 malformation/Autism and Ive been looking through the innernet for more info on AC1 and well,there isnt a whole lot of info out there. We first discovered Ryan had AC1 after having a MRI at the age of 2.Ryan was always a sickly baby.Had problems with weight gain,he couldnt keep his food down.He was late in development areas,weak upper and lower muscles tone and poor balance. Ryan was getting headaches since infancy. Your probally wondering how I could tell a infant was getting this head pain. well If you can picture a tiny baby putting his hands to the back of his head and giving out such a blood curdling scream you'd know too.The pain appeared quick and sudden and lasted seconds at a timeThis happened often. It broke my heart. Ryan had a EEG which came back normal(that was no picnic,seeing your small child wrapped up in what looks like a small straight jacket to keep him still with electrodes taped to his head.He was scared and cried allot. I had to put aside my own shyness and sing to him to soothe him. It helped) The next step was the MRI and there it was Arnold Chiari 1 malformation.Ive been looking for more info on it and there just isnt a whole lot out there.What I did find was not good news,RYan was evaulated By Easter Seals and was eligable for services.( I also found out I was pregnant again in the middle of all this chaos) Ryan attended a program for special needs kids called ARC in Montgomery County in Pensylvania,where he got Speech Therapy,OT and PT services But Ryan is doing better now. He's never needed surgery and the headaches have lessened over the years.Each year we notice his immune system improves a little more. At age 3 1/2 we moved to Lewistown Pensylvania, Ryan attended a program for special needs kids (TIU)Tuscarorra Intemediate Unit, He received the same therapy he was receiving from the last place.Then due to his developement delays he was DXS with Autism. He learned to talk at age 4 1/2. Ryan is now 6yrs old and is In a Self Help Skills class in Highland Park Elem. And he is doing a great job.Im so proud of him. But I cant help but wonder what the future will bring him.But I will not dwell on that and will live for the present and take it one day at a time. I hope this page will reach others and help them feel they are not alone. And I hope to add as much Info to this page to help other parents like myself. - Jaime King-