Anyone have kids with both Epilepsy and Aspergers ?

Tanya - posted on 02/16/2013

Interesting to hear that there are so many other mums with asperger children with epilepsy. My son is 10 and was diagnosed with apergers after a 6week period of epileptic episodes at the age of 5/6. We had just moved him from a state school to a private school as he wasn't learning through play and the private school had much more structure /timetables etc which initially proved beneficial. Once diagnosed with asperger's the private school was initially supportive and set up additional a fun club to aid sociallising in small groups adressing sharing, negotiation, communication etc (which seemed to benefit other boys in the year as well).
After and allergic reaction to his first epileptic drug at the age of 6 (resulting in a reduction in his white cell count and a period in isolation in hospital), he was fit free on no medication for 2 years. At the age of 8 we had a summer of fits escalating to one every 20minutes day and night. His fits presented with hallucination, autonomic response and a tendancy to run with limited memory of the occurance. Finally once officially diagnosed as epilepsy with an adhoc form of telemetry (combination of video and EEG) he was started on levitracetam (Keppra). He has been fit free for almost 2 years but unfortunately this January 2013 it has started again - and currently on and increased dose of Keppra, Clobazam and Topmirate. This combination has unleashed a zombified and a behaviour challenging child. He has had to move back into the state schooling system in order for him to be schooled in an asperger understanding secondary school. The difficulty is trying to keep him in the current primary school (feeder school) with him fitting and being behaviourally challenging. We have now been referred for the possibility of brain surgery for the focus of epilepsy.
This needless to say has huge impact on his younger sister and between the two of them have a daily battle for Mummy's Daddy's attention. Fortunately I do work part-time (thankfully with flexible employers and part-time from home). I would be interested if any one else has experience of brain surgery and epilepsy and has it had any impact on the asperger's / behaviour of their child post surgery.

Shireen - posted on 01/08/2013

Hi Everyone,
My son was in 6 when he started having petit mal seizures, about 6 an hour. He just turned 16 and for years his petit mal seizures have turned into grand mal seizures and he has been diagnosed with aspergers as well. He is a wonderful son who never bad mouths, trys to make good grades and never causes trouble. He is so thin. Only eats certain foods and I dont know how to help him socially and I dont know how to help him live with a seizure disorder. I also am having a hard time with my office manager with regards to working when he has a seizure. Desperately need advice on how to help my son.

Shireen

Kathleen - posted on 12/03/2012

My grandson has Generalized Seizure Disorder with Aspergers and ADD. He also has low thyroid. First grandmal was at age 11 although epilepsy was suspected much earlier due to night terrors. Meds: Lamictal ODT, levothyroxin, Vyvanse and Intuniv, plus mirtazapine for depression.

He is now 14 and his seizures are being controlled....aspergers seems more troublesome due to social awkwardness. Multiple friends On-line, but few in person. I worry about the dating years. He is very smart, but has difficulty with abstract thinking so schoolwork is sometimes a challenge. Very sensitive for his age. I am raising him and it breaks my heart to watch him try to fit in when others really do not want him around.

grandmomkat

Sara - posted on 08/20/2012

Hi my name is Sara I have a son his name is Braden and he is 6 years old he will be 7 on Friday. He has Genralized non-conclusive seizures the caus eis unknown. He was diagnosed in 2009 he was 4 at the time. He has petit mal seizures and has only had one grand mal seizure in 2005. He is developmently delayed. He also has a tremor he has a constant shake in his arms and hands the cause is unknown dose anyone have any ideas to what might cause this. Also he is being tested for aspergars syndrome but is very difficult to diagnose. any information you may have will be helpful. Thanks Sara.

Deb - posted on 07/17/2012

Hi, I just learned today that my 15 year old Aspie also is diagnosed wih seizure disorder. I have taken much comfort from the postings here. I thought that we were just beginning to see the light at the end of the tunnel. In first grade he announced that he wanted to be a herpetologist. We went through obsessions with dinosaurs at age four and Legos at age 8. He is extremely bright. Middle School was the most difficult 2 years with the agressive behaviors, denials of reported behaviors. I have always been a strong advocate for him - using community support systems, community mental health therapies. Now another burden for him. Currently he is taking Zoloft, Abilify and Straerra. The neurologist wants to add Lamictal. I welcome any thoughts on meds and coping for this very special young man.

Dawn - posted on 05/29/2012

Wow, so this is very interesting to read about. In our past people have always commented on my youngest daughter. She easily irritates people. She seems to have no regard for social etiquette or norms, no matter how hard I try to teach her. So the next issue is that epilepsy runs in our family (I was diagnosed at 17, my father younger, uncle, nephew, cousin, great aunt, and 2nd cousin all on my dad's side of the family). People started to notice early that my daughter would "space" out. I of course instantly worried because of our medical background. She had a sleep study done and an EEG. Sleep study showed normal and EEG showed some abnormality but nothing conclusive. Because she was having no other seizures other than what appear to be the "absence" seizures we decided to wait for medication if more symptoms showed later. Mine started at about 13 and I had my first grand mal at 17 and was diagnosed. So as my daughter is getting older I notice the lack of patience my family has for her. We have 5 children and they all treat her different, admittedly she can be abrupt and she doesn't follow the norms, but I really thought she was just strong willed. Now I wonder if it isn't Asperger's, but she doesn't seem to have all the symptoms, she has none of the flat tone, or repetitive behaviors. She does seem to have issues with social situations, difficulty making friends, she is extremely loud out of nowhere, has no care about "abnormal" behavior. My husband and I read about Asperger's and say yes to a lot and no to about a 1/3. Are the shyness, and non-eye contact, etc. always part of the syndrome? Or can a child be overly exuberant, not have a social filter, have little to no social skills, non-empathetic towards others and still be an Asperger's child? Just looking for opinions prior to seeing the doctor.

Marcee - posted on 05/08/2012

My 15 year old son who was diagnosed high functioning asperbers at age 4-5 just had a first time seizure in biology where he reportely gurgled first before falling ridgedly off his stool striking his head hard on the cement floor, bruising the side of his face/jaw and chipping a tooth. He convulsed about 5-10 seconds. He remembers nothing right before it and says his vision was "all white" when he came to. The TEACHER had a student walk him all the way down to the health room immediately following! I had no idea that aspergers and seizures might be related until I started searching the internet. Even my primary physician whom I love for the kids did not make the connection but in reading these here I suspect he has had smaller blank out ones before. Needless to say I am feeling scared for him and feel sad he adds one more thing to his coping list in life. We just lost my father in law to an unexplained fall where he hit his head hard enough to render himself braindead. What steps should I take in educating myself, things to present and ask the Dr.s etc. He is scheduled for an EEG (sleep deprived one) next week. Any of your advice would be helpful... Thank You.

Family - posted on 04/07/2012

Yes, hopefully the seizures are a thing of the past. I'm cautiously optimistic on that front as this is the second time that we have tried to go off anti seizure medication. The last time the seizures returned within 6 months. We are nearing the 6 month mark now since we stopped the Lamotrigine(9 months since we stopped Ethosuximide) and will be seeing the neurologist in 2 weeks so we'll see what a new EEG will show. Pat has eye tics which very much resemble what we used to see during his absences, so it makes it difficult to be sure that he isn't having seizure activity just by observation.

May I ask what adolescence was like for your son? Mine is experiencing a marked increase in the frequency and intensity of his meltdowns. He has become much more physically aggressive towards me. Previously it seemed that there was a line that he wouldn't cross but that is no longer the case. When in a meltdown he will insult, bite, pull hair, kick, hit, throw things at me, and destroy items in the house. Like Jessica’s son, he does not accept any responsibility for his actions. (I’m beginning to wonder if ODD is at play as well.)The psychiatrist has put him on Resperidone and it has helped somewhat but we are still having episodes every few weeks (an improvement from every few days). We are waiting to be assigned an educator to work with us to help us better understand the Asperger’s and to give us some coping strategies. In the mean while I ‘m reading as much as I can and trying to implement some of the advice. It isn’t always easy to recognize his triggers, nor to know the best way to ride our way through these crises. I have 2 other children, 1 older (also epileptic) and 1 younger (not epileptic). They both have a hard time witnessing these meltdowns and understanding what’s going on. The various specialists tell us that adolescence is the most difficult period for children with Aspergers. I’m hoping that things will look up and improve soon as the last year has been extremely difficult on the whole family.

Melissa - posted on 04/07/2012

The two connect often. Our son, now 18, had "frequent generalized seizures" as a little guy and started having grand mal seizures at 14. With you, it seems to be moving in the opposite direction, wonderful! For him the two have always been a part of life. Blessings and here's to hoping both guys do nothing but better and better! ~M

Family - posted on 04/07/2012

my son was diagnosed with generalized absence seizures at 4. He is now 14, epilepsy seems to be under control and neurologist weaned him off meds. Now issues that we thought may have been side effects of seizures and or meds point to apergers and he has very recently had this confirmed through testing( ADOS and ADI-R). The psychiatrist hinted that it was not unusual for epilepsy to alter the neuro pathways, thus linking the 2 conditions.

Melissa - posted on 04/03/2012

The eeg's tell some, as well as certain types of x-rays such as MRIs. At 18, my son has been through many trials with regard to medicines - and the doctor changes them according to how my son is feeling. Since my son is unable to express how he is feeling, we base it upon how he behaves...or whether he sleeps more or less than usual. Please feel free to email me if you would like to talk more, and we can still connect from here. I apologize for taking so long to get back to you this time.

Karin - posted on 03/23/2012

My 8 yr old son is showing signs of Asperger's according to his therapist but he isn't able to be tested because of his medical history. When he was 17mths he suffered a hemorrhagic stroke, he now has a cyst in his brain and suffers from partial seizures. There is know way of knowing if it's Asperger's or damage to the brain from the stroke. I was wondering if anyone else's child has medical issues and couldn't be tested and if so how are you treating it?

Jessica - posted on 02/09/2012

Question for you all, my son has Asperger's (rather new diagnoses which I am still getting used to) and he can be very aggressive. He denies that he did whatever the folks at school are saying in terms of physical and verbal aggression. I have been thinking about it mostly as he just doesn't want to admit it for fear of me being angry at him or just a general difficulty with taking responsbility for his actions etc. I have never seen anything that looks like a seizure to me but I started to wonder today if maybe he is denying this stuff because he really has no memory, i.e. a seizure? Might be grasping at straws here but curious what you al think.

Denni - posted on 08/20/2011

I have a 10 yr old that has been diagnosed with epilepsey, aspergers, and bipolar. Thank you for posting this. I am having a lot of issues with my son and I am really wanting to see if anyone else is having the same problems.

Sheri - posted on 01/08/2011

Yes be glad your seizures are under control!!! My son is better but not in control. Luckily they are only partials. But those are enough for us!

Maria - posted on 01/08/2011

We have dual diagnoses - Epilepsy and HF autism - It seems that 50 % of kids with Ep also have austism and vice versus. We have found that diet is best way to relieve Austism symtoms. We continue to battle siezures and cant get control. The good news is that austism behaviors can be modified and deficits can be learned such as social behaviors. Feel very fortunate if you have siezures under control and embrace the differnces in your aspy child.

Sheri - posted on 01/02/2011

Mine was too.

Melissa - posted on 01/01/2011

yes, our son was 'PDD-NOS" until he was 3 years old.

Leah - posted on 01/01/2011

Thankyou so much for the information Christa, i already have a folder for my son with EVERYTHING in it!! from things hes fascinated in to milestones hes reaching. i personally dont think ill do anything about it just yet as we are still trying desperatly to gain seizure control... Once hill at a time huh!!!

Tanya - posted on 12/31/2010

My son is 5 and has Autism and Epilepsy. He has grand mal seizures and suspected night seizures. Interesting to hear that others have responded like my son did to medication. He is on Epilim and within 2 months has doubled his words and understood small amounts of language. 12months since being on the meds he has improved sooo much. Our DX was slow bcuase he is high functioning it was hard to tell what was happening. Language delay became language disorder etc etc - i think it takes time sometimes if the behaviours are mild. My DS is the perfect angel in any specialists office, no stimming, no screaming. Until he walks out the door! I'm hoping for him to grow out of the epilepsy - thats what i've been told anyway.

Christa - posted on 12/30/2010

Leah,
Its difficult to diagnose Asperger's at such a young age. However, right now your best bet is to address the functional difficulties that your child is having. I started ajournal when Lennon was young that included all of his doctors and their contact information, results of any tests or office visits, developmental milestones, problem behaviors or behavioral oddities and their precipitating events, and all medications and reactions to them. If in fact you have to go through the evaluation process down the road, this information will be invaluable to you and you will be viewed as a credible historian of your child's development by medical professionals. All that being said, my youngest daughter, now 3, began showing some of the same symptoms as my son & I contacted our local Early Intervening Services office. Under the Individuals with Disabilities Education Act (IDEA) services are provided free of charge for qualifying individuals ages 0-21. After a little more than a year of receiving occupational and speech therapy for sensory integration and language difficulties, she is a different child. Those services were an absolute God send. The earlier the intervention, the better. Best of luck to you and your family in the new year.

Sheri - posted on 12/30/2010

I am my kids case managers for most part. Yes you can get diagnoses for ASDs as 18-24 mos. Our behaviors did not come out until 2 really. The bad behaviors that is. Asperger's is not really diagnosed that young. A very well educated diagnostician may do it. They give out PDD-NOS alot at that age so I have seen.

Melissa - posted on 12/30/2010

I am with you on this one, although my son is autistic, not aspergers. He has had seizures all of his life from "blank-out" seizures (frequent generalized seizures) to grand mal seizures which began when he was about 14 years old. He is 16 now.

Melissa - posted on 12/30/2010

Hi Everyone. My son has epilepsy (grand mal seizures now) and Autism (I call it "Aspergers with the volume turned up"). When we lived in California, doctors weren't allowed to officially diagnose him with autism until he turned age 3, but they told us anyway because of the need to intervene as soon as possible. So far, Keppra (which our neurologist never suggested) has kept seizures in check. He is 16 now. Gee, finally my own research led me to request Keppra and most of the information that I received about Keppra was here - both the good and bad effects of it. Nancy, please don't blame yourself. We trusted doctors back then more than we do now - at least we are more likely to add our own research and other doctors' opinions to help our kids. We also fought (and are still fighting) school district representatives who will say anything to save the district money, even when they know that they are lying. My favorite was recently, as we are trying to get our son placed early in a safer place (because of the epilepsy) was that we, as parents, need to understand that it is the school district's "mission" to see that our son has a diploma. OK, give it to him and watch him scrunch it up and tear it apart. Who cares about safety? Anyway, WE ARE GOOD because we PERSIST! Our son is happy and his teacher and aides do their very best. It has been a huge struggle with, however, many blessings as well.

Nancy - posted on 12/30/2010

Hi, my son now 20 has a medically controlled seizure disorder that began when he was 14 (although there may have been petite warning signs whenhe was younger mostly showing just before dinner when he would be hungry. He experienced Asperger's like symptoms as a child as well. Had I been persistent and assertive enough we may have known what was going on. Doctor claimed it was a behavior modification issue which still was foreign hogwash to me. His grade 1 teacher wanted to fail him for ignoring her, not listening and disrupting the class and not paying attention to her

Leah - posted on 12/29/2010

Hello there

I dont know much about aspergers or autism... personally i have avoided doing any research into it..
my 14 month old son has epilepsy and my mother and sister in law are convinced that my little man is showing signs of aspergers!!

How old is a diagnosis age?

If Jayden was to have it i cant imagine it would be very severe as i would never even have thought of it had they both not mentioned it??

I'm so sorry to hear both your stroies i really hope things pick up for you both.. its horrible watching your child in pain or hurting .

thankyou for listening
Leah

Christa - posted on 12/29/2010

Thanks so much Sheri. He has a great pediatric neurologist who strongly suspects Aspergers or PDD-NOS, but has sent me elsewhere for diagnosis. He has had 2 autism evals., both lasting only an hour & with high functioning/atypical spectrum disorders, you sometimes have to hide and watch. Kind of funny that one of the things on the ADOS was about snakes & the evaluator said he talked a lot about that & shared information. Snakes just happen to be one of his areas of strong interest. He unsolicited told me that he wants to be a herpetologist when he grows up & he knows exactly what that means. He is currently in a private Catholic school & the teachers there have really worked with us. I am a school psychologist working for the district that we live in, so I know that if I put him in public school they will want an immediate referral for a special education evaluation & even with that label, he will not get appropriate services. Seizure meds. made a huge difference with us too. He never slept more than a couple of hours at a time until we started those a little over a year ago. Do you have to act as case manager too? Thanks again for sharing. I would love to hear more about your son and daughter.

Sheri - posted on 12/29/2010

Hi. I have a son with high functioning (at the moment) autism and epilepsy. I have been through the wringer with him. He is finally doing alright at the age of 7. But at 5 he was not doing so well. I really understand Christa. You do what you can. Is the school helping out? You really need to learn your rights as far as public school is concerned. Are you seeing a good neurologist? Is not find a children's hospital and get a good neuro out of there even if you have to travel. Once I got him on good seizure meds, it made a tremendous difference. I understand being too high functioning. My daughter is 5 and has Asperger's and no one sees it. Only those of us who are highly educated on the subject know the difference. Christa---please reach out to those around you-a support group or online here or foggyrock.com.

Christa - posted on 12/28/2010

Hi I just joined Circle of Moms. I have never posted to anything before & am feeling very overwhelmed today, so please forgive me if I ramble. I really don't know where to start. I have a 5 1/2 yr. old son who has epilepsy & lots of characteristics of Aspergers/PDD but still no diagnosis. We have been to countless doctors & specialists over the past 2 yrs. & still no one can tell me whatis wrong with my son. He has encopresis, enuresis, lots of sensory processing difficulties, intentional tremor in right hand, intermittent oral facial tics, ADHD, and coordination/balance difficulties. His vocabulary s ridiculously advanced & the child really is brilliant, but is failing kindeegarten. Pretend play is just starting to emerge & he is not yet to the level of my 3 yr. old in respect to this devlopmental skill. He has been in OT for the past 1 1/2 yrs. & social skills have significantly improved, but lately we have had major backslides. He spends a lot of the time crying & hiding under furniture or in tight spaces & is now obsessing over Legos & the Wii to the point that he refuses to eat or do much of anything else. If anyone else has a child who's symptoms wax & wane, please share your experience with me.