My 11 yo son, who also has Autism, was diagnosed with Epilepsy a few days ago. I have soooo many questions and concerns. Im overwhelmed and a little scared, and a lot worried. Here is what one doc told me about the EEG report...
-He had two seizures during the test...once with the flashing lights and the other happened when they had him breathe fast for a minute or so. The doc said they saw activity in the front, left side of the brain. But my sons pediatrician who we talked to today said his whole brain lit up, not one part. My question is, what type of seizure is it? He didnt feel anything during the seizures with the EEG. Does that mean he could be having a lot more than he isnt aware of?
-We took him in because he has been telling us he has spells where he feels dizzy and it "feels like I am walking in a dream" His legs also get weak and he falls down occasionally. This has been happening for about 2 mo. now and instead of happening 1x a week like before it is 3 x a day on average. When he was 8 yo he had an incident where he was in the yard riding his bike, then came in the house crying and bloddy from scratches on his body and legs. He said he woke up on the ground and he didnt remember anything. He had an EEG a week or so later, they saw nothing. I am 100% convinced it was a seizure. He did not have any vomiting or wet his pants, so the doc said it wasnt a seizure.
Also, off and on he has these times where his upper body, or more often, his arm, jerks up/out. Not a little jerk, a big one. He says he cant stop it, his body/arm just does it. It is not rhythmic though, so the doc feels it is not seizure related. He talks during these episodes and is coherent, though his eyes look spacey, like he isnt all there. These episodes happen maybe 2 times a month.
We had a long talk with out pediatrician, who I dearly love and trust. He tried to reassure me and my husband (my hubby is reassured) He said it is nothing to worry about, they arent bad seizures. He wont have brain damage from them, and it is very, very unlikely he will have a grand-mal seizure. I have 6 kids, I know when to worry and whn not to worry over little things. Everyone seems to tell me its no big deal. Any seizure is NOT normal,
My gut feeling has never steered me wrong. Every one told me when my 4th child, my now 11 yo son, was younger and I was worried about Autism that he was fine, he was my first boy, they are different etc. I finally ignored them all and had him evaluated by a neurologist who specialized in Autism, and he said he is Autistic. Same thing with my now 6 yo DS, I told my old ped. to shove it when he dismissed my feeling that my DS, who was 1 at the time, was also Autistic. He was officially diagnosed at age 3. So I trust my gut feelings, and I just cant shake the feeling that there is more to this. I dont know what, but I cant just dismiss it.
What can I ask my ped to do as far as more tests? We have an appt with a pediatric neurologist but the first opening is Aug. 27th. That is a whole month away. Do we just have to watch him and hope nothing more develops? What about taking a proactive approach? What are your thoughts? ANY thoughts welcome, even the ones that tell me to stop freaking out and take a deep breath lol :embarrassed:
-He had two seizures during the test...once with the flashing lights and the other happened when they had him breathe fast for a minute or so. The doc said they saw activity in the front, left side of the brain. But my sons pediatrician who we talked to today said his whole brain lit up, not one part. My question is, what type of seizure is it? He didnt feel anything during the seizures with the EEG. Does that mean he could be having a lot more than he isnt aware of?
-We took him in because he has been telling us he has spells where he feels dizzy and it "feels like I am walking in a dream" His legs also get weak and he falls down occasionally. This has been happening for about 2 mo. now and instead of happening 1x a week like before it is 3 x a day on average. When he was 8 yo he had an incident where he was in the yard riding his bike, then came in the house crying and bloddy from scratches on his body and legs. He said he woke up on the ground and he didnt remember anything. He had an EEG a week or so later, they saw nothing. I am 100% convinced it was a seizure. He did not have any vomiting or wet his pants, so the doc said it wasnt a seizure.
Also, off and on he has these times where his upper body, or more often, his arm, jerks up/out. Not a little jerk, a big one. He says he cant stop it, his body/arm just does it. It is not rhythmic though, so the doc feels it is not seizure related. He talks during these episodes and is coherent, though his eyes look spacey, like he isnt all there. These episodes happen maybe 2 times a month.
We had a long talk with out pediatrician, who I dearly love and trust. He tried to reassure me and my husband (my hubby is reassured) He said it is nothing to worry about, they arent bad seizures. He wont have brain damage from them, and it is very, very unlikely he will have a grand-mal seizure. I have 6 kids, I know when to worry and whn not to worry over little things. Everyone seems to tell me its no big deal. Any seizure is NOT normal,
My gut feeling has never steered me wrong. Every one told me when my 4th child, my now 11 yo son, was younger and I was worried about Autism that he was fine, he was my first boy, they are different etc. I finally ignored them all and had him evaluated by a neurologist who specialized in Autism, and he said he is Autistic. Same thing with my now 6 yo DS, I told my old ped. to shove it when he dismissed my feeling that my DS, who was 1 at the time, was also Autistic. He was officially diagnosed at age 3. So I trust my gut feelings, and I just cant shake the feeling that there is more to this. I dont know what, but I cant just dismiss it.
What can I ask my ped to do as far as more tests? We have an appt with a pediatric neurologist but the first opening is Aug. 27th. That is a whole month away. Do we just have to watch him and hope nothing more develops? What about taking a proactive approach? What are your thoughts? ANY thoughts welcome, even the ones that tell me to stop freaking out and take a deep breath lol :embarrassed:
