Hi, My 23 year old son has been a puzzle to me all of his life and I have no diagnoisis and do not know how to get one anymore.
I had a normal pregnancy with a normal birth, he was a healthy 6 pound male with good apgars. He progressed normally until about 12 months. He rolled over and walked but never said a word..Just sounds no momma no Da-Da nothing. I took him from Doctor to doctor, nothing just wait and see..Well he could not potty train and never spoke but everything else was normal. School would not take him in Kindergarden because he could not speak. They tested for Fraigle X and such but never gave a DX. He could draw and he loved to look at books but never spoke. He did not like to be hugged or kissed and he rocked all the time and wrote in the air..I suspected Autisim but the doctors never said..This persisted from doctor to doctor test after test nothing. At 8 he suddenly began to speak, perfect sentences..We tried school but because he spoke to himself and wrote in the air and rocked, he was picked on...So I home schooled,he learned beautifully in his own way. As he grew no DX..The seizures began with a vengance...MRI's CT's Blood tests all normal..Just a borderline abnormal EEG...As an adult at 23 he cannot work because he sings and laughs and rocks and writes in the air, he does not intereact well with strangers and gets physcially ill at any critisim or pressure. Seizures are monthly and still no diagnoisis. I just took him to the neuro for Tegretol refills and I asked whats wrong and what did I get I don't know..Well I don't know will not get my son any help..He cannot drive or support himself..I have cared for him for 23 years and will continue to do so..But I worry about when I am old or have passed on. His brothers and sisters will care for him, but he cannot get any help from Social security or Services for the handicapped because he has no diagnosis. I have run out of funds to try this doctor and that doctor and all I ever seem to get is well we know he has a seizure disorder, but we cannot explain the autisim type symptoms..His movements are spastic and jerky. He stares past you when you speak to him.He responds in brief words, yet with good detail and cannot follow commands very well. Yet he can draw so beautifully and has a photograpic memory for maps and travel related issues, when he gets on a hobby or subject it becomes his life, I want so much for him and I do not know what to do..I want to see that he has funds to care for himself and I would like to find programs to help him, but with no DX no one can help him..Can you give me any ideas or suggestions. I want the best for my son, and I would sometime like to know why he is ill in this manner. I have 3 other children all fine..He was my firstborn at the age of 17, no drugs or alcohol, No meds other than bentyl for nasuea early on. and I used Kwell at 7 months pregnant because of something my baby brother caught at school(lice)..Otherwise uneventful. Your group is very helpful and knowledgeable and I hope you can point me in the right direction..Thank You