Any parents have a child with Autism and Epilepsy

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User - posted on 03/23/2011

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Yeah, it just seems like one more darn thing, doesn't it?! Yes, my 14 yr. old son has autism, and he started having seizures when he almost 12 yrs. old. According to several medical people I've talked to, this happens to many autistic boys when their male hormones start coming in. He only had 2 very small "absence" seizures within a week of one another, then nothing more for about 2 years, when he suddenly had a grand mal. He's been on Keppra for the last year, but he had another grand mal last month, so we added Topomax. The Keppra seems to be making him very aggressive, so I didn't want to increase it. We're going to gradually work on finding the right balance.

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Nicole - posted on 11/18/2013

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My name is Nicole and I have a son "Joshua" who has autism & seizures. His seizures started at age 12 and every month he will get a seizure . He takes topomax and kepra . It seems to slow the seizures down but still has breakthrough seizures. To me it feels like no matter how many times we've changed and up dosed his medication , He still gets these breakthrough seizures. I'm wondering if any of you considered of using medical marijuana.
I'm considering it now because it seems like nothing else is working for my son. I'm afraid of losing my son since, The Study , published in the journal of Child Neurology and data from the California State Department of developmental services demonstrated a higher than expected rate of mortality in individuals with autism and epilepsy than autism alone. The mortality rates increased by 800% when epilepsy and autism occurred together .

Heather - posted on 01/02/2013

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My little boy is 3 and was diagnosed with a form of epilepsy called West's Syndrome at 7 months. Most of the literature published refers to the fact that people who suffer autism have a higher chance than normal of having seizures. For him, the problem is reversed. The epilepsy kicks in and as it progresses his behaviour goes out the window with many of the boxes ticked for ASD. As we change his meds and get the seizures under control, his behaviour issues resolve. They might not know what the link is but I am convinced for some people (even if just a minority) there is one.

Kimberly - posted on 11/22/2012

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My 15 yr old son Gavan has had 3 seizures now, one was a simple partial seizure, the second was a complex partial seizure and this last one which happened on the 19th of this month was a tonic clonic seizure. they are progressively getting worse and the neurologist I origionally took him to after his first one chaulked it up as a migraine which I knew was wrong but he's the doc ya know....I had the paramedics come and we went to the ER with this last one....Most terrifying thing I've ever gone through so far...no one told me, ever, that 1 in 4 to 1 in 3 autistic children develop seizure disorders...no one...



His first one was the day before his 15th birthday last year. well the first one I noticed somethng was really wrong. I'm sure he had abscence seizures many times before that once I started researching the different types because he would "space out" at least a few times a week....it would only last maybe a minute but Ifigured he was day dreaming...I did it all the time as a child so I thought nothing of it until the simple partial seizure happened the first time.



His first tonic clonic (grand Mal) seizure happend 3 days ago so I'm still very scared and have been flooding my brain with information and talking to everyone I can to get him to a new neurologist and working with assistance programs to help me pay for it so I don't know how much help I can be but if you need a supportive ear that knows what you're going through. Please don't hesitate to contact me.



Have a wonderful thanksgiving and christmas season! :)



Kimberly

Melissa - posted on 07/20/2011

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So far her seizures have been controlled with keppra and zonegran. We have problems when she is sick, allergies, overstimulated and when the weather gets to humid. Thanks to everyone for their input.

Mary - posted on 07/13/2011

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Hi Melissa,
I just want you to know that the ketogenic diet is working for my son Kevin. He has now been seizure free for one whole week. Prior to this he was having tonic clonic seizures every 3 days and he would have one after another. He is on the maximum dose of three medications. The epilepsy and the autism combination is very challenging. Hang in there.

Beth - posted on 07/06/2011

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Statistics say 20-30% of children with Autism will develop Epilepsy, and several studies also say that children with Autism have epileptiform activity (synchronized neuron firing) especially during sleep. There are studies being done to determine the best way to treat children with ASD who also have Epilepsy. I am a parent advocate for families with ASD/Epilepsy, and work with Dr. Gregory Barnes who has an ASD/Epilepsy Clinic at Vanderbilt Children's Hospital. My son, Caleb passed away in January this year and had diffuse bilateral cortical dysplasia which caused Autism and Intractable Epilepsy, he also suffered from Aplastic Anemia, Myelodysplastic Syndrome and he likely had a Mitochondrial Disease. He had chronic Pulmonary Aspiration and severe GERD, which required a Nissan and GJ tube for nourishment. We used Modified Atkins and then Ketogenic diet and also VNS therapy. There are so many things to consider in treatment, but if your child has Autism, you've already become an expert in seeing that different things work for your child. Take that same view when dealing with Epilepsy, one thing may work for your child that will not work for another. Finding a doctor/neurologist that understands both is difficult, but will be extremely helpful to you in treatment of seizures as many neurologists confuse "behaviors" when the child has ASD instead of seeing the seizures. Best wishes and love to each of you on the journey with your children. If I can be of help to any of you, feel free to contact me.
Blessings,
Beth Baker
Parent Advocate
http://www.calebsmom-bethcbaker.blogspot...

Mary - posted on 07/02/2011

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I have a 9 year old boy who is autistic and has had irretractable epilepsy since the age of 5 years old. He is currently on Keppra, Trileptal, and Lomictal and still continues to have full days of seizures every three days. We are now resorting to the Ketogenic diet and will begin this in a few days. I am hopeful that both autism and epilepsy are linked to a gastrointestinal disorder and will hopefully respond to a diet.

Annabel - posted on 03/25/2011

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My daughter has had mild, absence and partial complex seizures, on and off. She has had 3 year periods clear, then 2 in a week. Her specialist hasn't put her on medication, as the side effects can be bad, but has had tests all came up clear so its wait and see - if they escalate medication will be reconsidered, but for now she is OK, seizure free for 6 months touch wood

Laurie - posted on 03/24/2011

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I have a daughter who's had seizures since age 4 months, and later was diagnosed with Autism. She's been on the ketogenic diet and a whole array of anticonvulsants. She's 18 now - and once she stopped growing, seizure control improved. She still seizes - did so in a restaurant today, but so what? They are a part of life and you have to gain some perspective on them. At times I wondered which I hated more - the seizures or the autism. But I've come to accept them both, do my best for her, fight for her.

Robin - posted on 03/24/2011

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My 19 year old has had petite seizures and was diagnosed with mild autism about 3 years ago. We found out that with an MRI that she has possible epilepsy. She was taking zorontin, but was changed to the generic of Topomax over a year ago. She is doing fine on it also. She has learning disabilities and will never be able to live on her own.

Melissa - posted on 03/24/2011

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My daughter who is 31/2 has had seizures since birth, started out absent seizures, as she gets older they get more intense. She also now has the body jerking and the grand mals. They've had her on Keppra for the last 2 years. Beginning was rough with the aggressions but she does better now and they have her on Zonegran which helps with the jerking and keeps her grand mals down to a few minutes. They would last anywhere from 10 to 45min before. When they up her meds it's usually the Zonegran. How are your kids sleeping habits, do they tend not to sleep for days?

Judy - posted on 03/24/2011

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Yes, my son does. He went several years seizure free, and then at age 11 after playing video games with his dad he had an absence seizure. Two weeks later he had a tonic clonic seizure, again after a video game. He was put on trileptal and the seizures seemed well controlled for a couple of years, but then after his 13th birthday he has started having more seizures, averaging one tonic clonic seizure twice monthly. He is now on 200 mg of Lamotrigine twice daily, and 1000 mg of the generic for Keppra twice daily and he has not had a seizure in about 3 weeks. I also stopped giving him the stimulant medication he takes for his ADHD (Metadate), because I reasoned that his brain didnt know what to do...should it be stimulated or calmed down? He seemed to be having a lot of absence seizures, several a day, right before we stopped giving him the stimulant, and that has stopped completely as well. I never knew that autistic kids were at an increased risk for seizures until it happened to my son. I wish I had been prepared for that - but maybe that was for the best as I am a terrible worrier.

Trudy - posted on 03/23/2011

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I have 2 boys both have autism and epilepsy. My older son's seizures have been well-controlled on Lamictal but my younger son has been on several medications (now on Keppra, Lamictal, Klonopin and Topomax). He also had a VNS implanted last May. He has not been controlled at ALL! Hoping to see improvements with the VNS.

Emma - posted on 03/23/2011

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Melissa I have a 10 year old boy who is autistic and over the last 2 years has varying degrees of seizures.He is currently on Tegretol for the seizures

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