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My Son and No Diagnosis(Long)

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
6 Responses
Avatar universal
Dear BJP:

I am very sorry to hear about your son.  I think he may have a form of pervasive developmental disorder called Asbergers.  I would take him to another pediatric neurologist and get a diagnosis.  He should qualify for social security or at least disability because he has documental intractable seizures.  I think I would have him re-evaluated for epilepsy and get it documented that he has epilepsy.  Most of the time, pervasive develpmental disorder does not have a specific test that will give a diagnosis of PDD.  It is a constellation of syptoms of language problems, difficulty with relationships, stereotyped behaviors, cognitive problems, etc.  Let us know how the visit goes with the pediatric neurologist.  You might have to do some explaining why your trying to get to see a pediatric neurologist and not an adult neurologist.  But the pediatric one will do a much better job in diagnosising your son.


CCF Neuro MD
Avatar universal
Thank You very much for your input. One neuro did mention AspergersSyndrome but he never said anything else about it. I will try to see if I can fine a peds neuro to see him the closest one to me is about 40 miles away and he may not see him as an adult. He has chronic headaches with visual disturbance that accompany his seizures and the postictal states are long at times. His seizures usually begin with him moaning and he will stare past you and walk to a couch or chair and his facial muscles and one arm will jerk and he will make a clicking sound for several minuts and he will drool, Then he will cough and be out of it for as much as 30 minutes.. he used to have Grand Mal seizures..But he went for yesrs suddenly at about age 16 to about 19 without any seizure activity at all and then they returned and presented in the above described manner. The neuro said they changed to Jacksonian in nature.. He also has a great deal of digestive problems....Thank You for your help and if Clevland Clinic has a peds neuro that will see my son and help me to get a DX..I would travel gladly for any help or DX..Please let me know  Thanks again Betty
Avatar universal
What part of the country do you live in?  If you are close to me, I will try and help you.  A mother's love--is there a love or bond any greater?  You are a wonderful human being and a glowing example of what parenting is all about.  You have my sincerest respect and admiration.  Maria
Avatar universal

I have a son who has autism.  Your son fits *many* of the symptoms.  Also, a large number of persons with autism also have a seizure disorder.  You can ask your doctor to refer to a Clinical Psychologist who can also make a Dx.  There are a number of interventions that can be done for your son.  Good luck

Avatar universal
Maria and Mamalama,

Thank you for your responses. I live in southwest Virginia. I have taken Michael to many different doctors over the years with no solid Diagnosis. I was told that he has possible Aspergers type Autisim, regular autisim, Maybe brain damage and seizures..But no one will put a Diagnosis on paper for me to get him any kind of intervention..Everything I have gotten in the way of help for him I have had to do myself and pay for myself..And of course thats fime, I love my son very much and I would do anything for him, but I see many people recieving Social security Disability for such things as Alcoholisim, Drug Addiction Damage, Bi-Polar syndromes, Injured Backs and even injured toes..Yet here is a gifted young man with a obvious disability who cannot get any help outside of what I am able to provide for him because I cannot get a solid diagnosis, and without that he qualifys for nothing in the way of programs or SSI..I have done my very best to home school him and teach him and care for his needs and medications with no insurance or help from anyone including his bilogical father who recently commited suicide..My current husband has been like a father to him and has done so much..I would like to make sure that Michael has all he needs for the rest of his life when I am too old to do much...
Thank You both for your concern and such...
My e-mail is ***@****
Thanks all...Betty
Avatar universal
Has anyone ever tested your son for a mitochondrial disorder? My child had a disease that was very strange, and it was finally diagnosed as a mitochondrial disease-which is a disorder which can present itself in a variety of ways throughout the body. Good Luck
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