Autism and epilepsy/seizure disorder

[rakowskidp]

Our oldest boy, Jacob, was diagnosed with autism when he was a few weeks short of his 3rd birthday. Now, he's 14 years old, and 3 months before his 14th birthday, experienced his first tonic-clonic seizure. He's since had 3 more, averaging about 38 days between seizures. Has anyone seen anything remotely like this?

Three years ago, he started exhibiting very strong head tics. He would slowly move his head backward, and then violently snap it forward. This will typically happen 4-5 times before it subsides. His neurologist prescribed medication for the tics that initially seemed to provide significant relief - that is, until he had his first tonic-clonic seizure. Now it's practically out of control.

For many years, he's also had episodes where he'll stand completely still and close his eyes for several seconds while becoming completely unresponsive. The doctor doesn't seem to think this indicates seizure activity, but I'm not so sure.

He underwent a multiple-day EEG at a local hospital, which ended up lasting 36 hours (until he could no longer handle the sensation of having leads applied to his scalp). Results of the EEG were normal, and his doctor's initial diagnosis is extra-temporal epilepsy.

Any advice or suggestions are most welcome. Thanks!

 

[Nakamova]

Hi rakowskidp, welcome to CWE!

Just out of curiosity, what was the medication that helped with your son's tics? Is he still on it, or is the neurologist switching him to something else?

 

[rakowskidp]

Hi rakowskidp, welcome to CWE!

Just out of curiosity, what was the medication that helped with your son's tics? Is he still on it, or is the neurologist switching him to something else?

Ah, yes, I should've mentioned that... he's on clonidine, 0.1 mg 2x/day. His new neuro (whom we've just started seeing a few weeks ago, as his previous one focused more on sleep disorders than seizures and epilepsy) hasn't changed it.

We went through a brief trial of topamax, but it appeared to make him extremely angry and aggressive, so we withdrew it and went back to keppra, which he seems to tolerate relatively well.

I'm seriously concerned about the inter-reactions of his entire suite of medications (which includes zoloft and risperdal in addition to keppra and clonidine). I would love to start over from scratch to determine whether one or more of these drugs might be exacerbating his symptoms.

EDIT: and thanks for the kind welcome!

 

[Nakamova]

I agree -- it can be very tough to determine what are side effects and what are symptoms when there are several meds involved. You should bring up your concerns with his doctors -- it may be that the advantages of reducing one or all of his meds may outweigh the uncertain benefits of polytherapy.

It's possible to build up a tolerance to clonidine, so increasing his dose might help with your son's tics. On the other hand... clonidine appears to work by depleting norepinephrine. Since norepinephrine is thought to have an anticonvulsant effect, reduced levels of it might also lower the seizure threshold, and lead to seizures.

Risperdal can increase the risk of seizures too, and seizures are a rare side effect of Zoloft. This doesn't mean they are necessarily the culprit for your son. Unfortunately, the brain and the brain meds aren't well enough understood to be sure about what causes what. As a result there can be a lot of trial-and-error to find the right med or med combo.

For many years, he's also had episodes where he'll stand completely still and close his eyes for several seconds while becoming completely unresponsive.

These episodes sound like absence seizures. Why does the doc dismiss this possibility? What does he think is a more likely explanation?

 

[rakowskidp]

These episodes sound like absence seizures. Why does the doc dismiss this possibility? What does he think is a more likely explanation?

I don't think he's necessarily dismissing them. My thinking on these episodes has changed significantly in the past few weeks as I've done more research and reflection on Jacob's condition (that is, since we first saw this new doc), and his thinking may have been influenced by our initial impressions of them.

We used to think that the eyes-closed unresponsiveness was related to sensory avoidance, as Jacob is sometimes overwhelmed in situations that are both loud and bright (such as a well-lit room in which a television is playing at top volume, and his siblings are playing loudly around him as well), so we thought that was a factor. But I'm just starting to put the pieces of this puzzle together and figure out whether they're inter-related, which is what led me to investigate absence and myoclonic seizures. Based on what I've read in my research, I'm leaning toward some type of seizure activity rather than sensory overload, and leaning strongly toward seizure activity as an explanation for the violent head tics.

I'm going to make a concerted effort to video-record several such episodes for review at our next appointment. I'm also going to ask him some more pointed questions about the issues you've raised with these specific meds.

 

[Nakamova]

If it's not contraindicated, you could also try adding a magnesium supplement to your son's diet. Magnesium plays a role in relaxing muscles throughout the body, and some people have found that it provides relief from tics, myoclonic jerks, cramps, twitches, etc.

 

[donnajane]

Rakowskipd thank you so much for your posts. We are still in the process of working out what is going on with my little man we have been on this journey since he was born first they thought it was "just strange reflux" then at 7 1/2 months they realised it was more nureological when he had lots of small seziures. He's 26months old with a variety of what look like seziures, nureologist isn't exactly sure what they are but said they do look like seizures but isn't convinced he has epilepsy. He also has a brain lesion on his putamen. What jumped out at me in your post was how your son closes his eyes and is unrepsonsive and as if your son was ovewhelmed in siutation. Our little man started doing that around 2 months ago. Before this he had periods of where he would "zone" out and be there but no emotion just functioning. He has absence events as will as other seizures. Often when he wakes up from a nap we can see on his monitor him playing then suddenly he will zone out for quite a few minutes, he is so still it is like the video had paused, we can go into the room and talk to him and he will still be 'frozen". With the increase in his eye's closed zoning out has come an increase in smaller events with his eye's 'fluttering'. At other times he can be the average toddler although his moods are often extreme ie so loving has to have his face right on yours on super agitated.
Would you mind sharing with me how Jacob was before he was diagnosed with autisum, what were the things which helped them to make the diagnosis. With our son all of his specialists are looking at a metabolic issue as he can also have periods where he forgets how to walk, longest one was for over 24hrs.
His specialists keep telling us they know something is not right and they keep feeling they are missing something but also say that they are sure once a diagnosis is made they will look back and realise all of the signs where there.
Thanks again for your posts. I am learning so much from everyone on this site.
Donna

 

[RobinN]

Have you done any research about the brain gut connection with autism and seizure disorders?

 

[rakowskidp]

If it's not contraindicated, you could also try adding a magnesium supplement to your son's diet. Magnesium plays a role in relaxing muscles throughout the body, and some people have found that it provides relief from tics, myoclonic jerks, cramps, twitches, etc.

Ah, thanks. That makes perfect sense, and I don't know why it hadn't occurred to me before!

 

[rakowskidp]

Good morning, donnajane. I appreciate what you've shared about your son. He sounds like a wonderful little boy, and I pray that you and your medical team are able to get some answers!

Would you mind sharing with me how Jacob was before he was diagnosed with autisum, what were the things which helped them to make the diagnosis. With our son all of his specialists are looking at a metabolic issue as he can also have periods where he forgets how to walk, longest one was for over 24hrs.
His specialists keep telling us they know something is not right and they keep feeling they are missing something but also say that they are sure once a diagnosis is made they will look back and realise all of the signs where there.
Thanks again for your posts. I am learning so much from everyone on this site.

Jacob developed typically until he was roughly 15-18 months old, though he was always particularly sensitive to loud and/or abrupt sounds (for example, doors slamming or someone sneezing nearby). He suddenly (VERY suddenly) stopped speaking and stopped hitting typical developmental milestones (self-feeding and other fine- and gross-motor skills). He went through several years of difficulty in falling and staying asleep. To this day, he is non-verbal and incontinent, though he's (slowly) acquiring self-care skills. Again, all of these started abruptly and any abilities he's gained over the years have been gained through great pain, tons of repetition and lots of backtracking. In short, he's nowhere near a typical 14-year old developmentally.

 

[rakowskidp]

Have you done any research about the brain gut connection with autism and seizure disorders?

We did lots of gut-brain testing and treatment (including, among a lot of other things, a diet that eliminated, one by one, the following: gluten, casein, eggs, soy, oranges and nuts), and stopped when it became apparent that it was having no discernible impact on his behavior.

 

[donnajane]

Thank you so much for sharing your sons experiences. I am thankful although my son has periods of regression which can last days he also comes out of them. all except so far for his memory which often requires us to work a lot on repitition on things he use to know. Due to his age Dr's have said it is still going to be a wait and see how he develops and his nureologist has said our aim is to help him to develop to the highest of his potential, what ever that may be.
When he was younger he was obviously delayed, then he caught up a bit and now as he gets older his "issues" are becomming more obvious.
Thank you again for sharing your sons journey.
Donna

 

[rakowskidp]

Thank you so much for sharing your sons experiences.

You are quite welcome, Donna!

I am thankful although my son has periods of regression which can last days he also comes out of them. all except so far for his memory which often requires us to work a lot on repitition on things he use to know. Due to his age Dr's have said it is still going to be a wait and see how he develops and his nureologist has said our aim is to help him to develop to the highest of his potential, what ever that may be.
When he was younger he was obviously delayed, then he caught up a bit and now as he gets older his "issues" are becomming more obvious.

What sorts of tests have been done to assist in diagnosing his condition?

Jacob had another seizure last night while I was at church. My wife reports that it seemed more severe than the previous 4. She used Diastat to stop it, and the seizure stopped after several minutes. I suppose it's possible that he needs a larger dose of Diastat, though I'm not certain how these things work.

He's also been displaying more seizure-like activity since the doctor increased his keppra. Yesterday, for example, he had what seemed to be a myoclonic seizure. He turned his head to the left, made a strange grin and held that position for a few seconds, then returned to his activity (reading a book, if I remember correctly).

He's had a head/neck tic for a few years now, but it's changed recently. It used to be several rapid backward-forward snaps. Now, it's a slow pulling back of the head, followed by a rapid snap-forward, and finally sticking out his tongue, just a tiny bit, for about a half-second. These come in bursts of 4-5 head snaps.

Earlier in the week, he was changing his clothes, and while pulling his shirt over his head, he paused for several seconds and became unresponsive. I can't imagine that to be anything other than an absence seizure.

My wife called to explain all these changes to our neuro, and we're going to see him Wednesday to discuss further. I'll update this thread after the appointment.

 

[rakowskidp]

Some more information about what we've noticed since Friday:

Two nights in a row, Jacob went to bed normally, without any difficulty in falling asleep. He awakened normally, took medications, ate breakfast, and went back to sleep immediately for several hours. In fact, yesterday, he went back to sleep from about 9:30 AM and didn't wake up until after 1:00 PM.

We suspect he's having seizures at night. I need to figure out how to monitor him without staying up all night myself.

 

[mzollinger]

I'm new to the forum and to Epilepsy with my children...so, I don't think I have anything valuable to add. But, just wanted to thank you for sharing your experiences. It helps many of us. I'm soooo sorry you are going through this with your son. It must be so hard.

My son recently started having grand mal seizures 1 month and a half ago. He primarily has partials, but, we've seen 4 grand mals in the last month and a half. His have a pattern; every 12 to 14 days, and all but one has been at 9:30 a.m.

I can only imagine how hard it must be to be going through what you are. I'm so overwhelmed myself, and my son hasn't had to deal with as much as yours. Bless your heart!

 

[rakowskidp]

I'm new to the forum and to Epilepsy with my children...so, I don't think I have anything valuable to add. But, just wanted to thank you for sharing your experiences. It helps many of us. I'm soooo sorry you are going through this with your son. It must be so hard.

Thanks, and I'm glad my comments have been helpful! We're only at the beginning of our journey with epilepsy, and have so much to learn!

My son recently started having grand mal seizures 1 month and a half ago. He primarily has partials, but, we've seen 4 grand mals in the last month and a half. His have a pattern; every 12 to 14 days, and all but one has been at 9:30 a.m.

Very curious! Do your doctors think there's anything notable about this pattern?

Until this past Sunday, Jake's seizures were occurring every 5.5-6 weeks. This one was about 2 weeks ahead of schedule. The first two occurred at roughly 8:00 PM, the third at about 2:15 PM, the 4th at 1:00 PM, and the 5th (most recent) at about 9:25 PM.

I can only imagine how hard it must be to be going through what you are. I'm so overwhelmed myself, and my son hasn't had to deal with as much as yours. Bless your heart!

I don't know that it's been all that hard, really. I mean, yes, we're terrified for Jake, especially since he's unable to tell us what's happening. But, we have a medical team with which we feel comfortable, outstanding teachers and support staff at school, lots of great friends, and most importantly, a supportive family environment. It's challenging, for sure, but not at all hopeless, if that makes sense.

 

[mzollinger]

We are in the beginning process still...so, we don't have many answers yet at all...it has been suggested by one of the nurses that they might want to do a video eeg of him, by admitting him for a couple days and monitoring him, and videoing him while he sleeps.

We will see what happens. We have our follow up appt. in June where we will probably discuss that.

 

[rakowskidp]

We saw the doctor yesterday afternoon, and here's a summary of what we discussed:

1) Jacob's 36-hour EEG didn't show any interictal abnormalities that would indicate myoclonic or absence seizures, and we didn't capture any tonic-clonic seizures. So the EEG was "clean."

2) So we don't think his blanking-out or head-jerking episodes are seizures. More likely, they're autism-related self-stims or sensory avoidance techniques (and yes, those are fairly common in kids with autism).

3) But he's still having seizures, even though he's on a higher dose of keppra since we left the hospital on March 29. His most recent seizure occurred 16 days after leaving the hospital (and 20 days after his previous seizure).

4) We noticed that his seizures are occuring between late afternoon and bedtime, so we decided to add an extra dose of keppra when he gets home from school, at about 2:45 PM. Initially, we're giving him an extra 250 mg, and increasing that to 500 mg after 7 days. He'll eventually be on 750 mg in the AM, 500 mg in the afternoon, and 750 mg at bedtime.

5) Doctor suggests that we have a little more room to increase keppra, but may switch or add drugs if he has more seizures.

So that's it. Very frustrating, especially since he's non-verbal and thus can't tell us how his medications are making him feel, or if he feels an aura ahead of his seizures.

 

[donnajane]

Wow how frustrating!

Tests my son has had.
5 EEG's although first 4 "clear" his eye's rolled back briefly during the flashing lights but no alteration on the EEG. 5th EEG also showed a slowing on the back right of his brain.
He has had lots of blood and urine tests most normal. Iron boderling and his zinc was strange (His paed's words) he had zinc in his blood but bascially none in his red blood cells. Both his paed and nureologist spoke to several other specialists re this and all said at this stage it is of no clincal significance.
He has had a lumbar puncture, looking for metabolic issues.
2 MRI's both showed he has a brain lesion on his putamen but they are not sure what it is or if it is causing his issues. He has to have regular ones to monitor this until he is at least 10yrs old.
He had a brain ultrasound when younger around 11months and although it showed nothing he was having his what look like uncontrolled movements then and the ultrasound technician said if he was his son he would push for an MRI.
A chest Xray when 6 1/2 months old due to having bronchioltis for around 3 weeks which we were told was unusual.
A stomach ultrasound as he had what they thought was very bad reflux from birth but have now been told it may have been mild reflux and his seziures the making him vomit.
3 Audilogy assessments. First one around 8months he couldn't respond to a bell ringing and we were told it looked like he had a major hearing loss. He had passed his one at birth so they booked him back in for a sleep test 2 days later which he passed well. They said the difference was his brain was in a different state while asleep. They also tested him awake that day and he was having a good period so responded to some of the sounds. He had another test just before he turned 2 and they said he was almost too hard to test as he was not able to stay on task really and would turn all the time to see the puppet without a sound even being played(that was the "reward" a puppet lit up in a box on the side the sound came from). The audiologist also tried to do another test directly into his ear. She was able to test one ear and again we were told he should have the ability in that ear to hear but she was unable to test the other ear due to his behaviour. She asked us to come back in another year as hopefully he would be able to participate more in the testing but she said it could be that he can hear the sound but does not process it properly. So more wait and see, more questions.

His metabolic specialist is also now talking about a liver and muscle biopsy down the track if things don't settle down and there is still no diganosis. We would love to avoid this as from what we have been told it's traumatic enough for an adult let alone a toddler.

We are waiting on a call from Early Intervention to help us with his communication and behaviours as at the moment we don't know if we are actually making some of his behaviours worse by how we respond to them. His child care has been great, they are at my work next door to my office, I am so lucky. His aide at child care has asked if she would be able to come to some of his appointments with Early Intervention to ask questions as well as they are concerned re his behaviours and what look like seizures. Of course I said yes as I am sure I will get out of the appointment and go I should have asked........ I usually go in with a list of question but sometimes still forget to ask.

His nureologist said in latest email "I am still not sure it is epileptic, more an overload, “brain time out” phenomenon."

We often feel that instead of getting answers we end up with more and more questions. We know it is a wait and see where his condition takes us with his age, being only 27months, but it can be so frustrating and we don't wan't to end up going if only we had started working with him earlier......

Thanks again for sharing Jacob's journey. I am learning so much from reading the journey others are on.

Donna

 

[KarenB]

Hi -- our son also has (temporal lobe) epilepsy and autistic like traits. He also has Down Syndrome, which makes everything even more interesting.

Jon began having seizures at age 1, and then by age 2 they were well controlled for 3 1/2 years with meds, and during that time he made good development (speaking, gross motor, etc.) with minimal stemming and other autistic traits (he is sensitive to high pitched noise like woman's laughter, kids' shrieking, and sudden noises).

At age 5 1/2, he began having seizures again, and THIS is when we began to see a lot more autistic traits -- a lot of auditory stemming/grunts, and also at this time he lost 90% of his spoken language (although he still has receptive language). Now he only speaks about 5 to 10 words (comes and goes). He also became incontinent at this point. The next 2 years his seizures progressively got worse as different meds were trialed. During this time, we saw a LOT more stemming -- such as constantly needing to have something to dangle, getting overwhelmed in Walmart (bright lights) to the point he would make this loud repetitive grunts that could be heard halfway across the store. Finally put on the Ketogenic diet, which gave him complete seizure control for 1 year, and autistic traits eased.

THEN, after a couple intestinal viral infections (6 months apart) he lost seizure control, and after the 2nd infection, his seizures got really really bad -- several tonic or tonic-clonics each night. He also began banging his head on the wall, and doing that neck whip thing that you mentioned. It scares me to death that he's going to do permanent damage to his neck/spinal cord. Anyway, different meds trialed -- Diazepam (Diastat) increased aggressive behavior, made him hyper, and didn't control seizures. Keppra increased aggressive behavior and seemed to make seizures worse. Finally settled on Zonegran and tweaking the Ketogenic diet, and regained seizure control in January -- he's been seizure free since then.

In the almost 3 months of seizure control, he's much more alert and aware of his environment. His auditory stemming continues (especially when he gets over-stimulated), but he can control it with little reminders from us. He still does that neck flinging thing and still likes to have something to dangle.

But...it seems that seizures make autistic traits worse, in our experience.

*************
Now...to your child:

1) I agree that magnesium may be helpful -- we started Jon on a nighttime dose last October, which immediately gave him better sleep, as well as better seizure control.

2) A "clean" EEG doesn't mean that the unresponsive episodes you are seeing are not absence seizures, unless he happened to have one while hooked up to the EEG. In fact, they really DO sound like absence seizures to me.

3) I don't think the head jerking behavior is seizures -- I think it's probably autistic -- but in our case, it developed when Jon's seizures were really frequent -- so there must be a relationship.

4) I recommend putting a baby monitor in your child's room so you monitor night-time seizures (if he makes auditory sounds during a seizure). This is what we did, until Jon's seizures got really bad, then one of us slept in his room for a few months (most of his seizures were nocturnal). We've now rearranged the house a little, and moved our bed and Jon's bed into one big room, so he sleeps in the room with us for now. If he continues seizure free, he'll get booted back to his own room with the baby monitor.