Drs, Psychologists, parents of Aspies or anyone else who may know

[creekland]

I need to tap the Hive mind again.

 

Youngest (and us) got back from the emergency room at 12:30am after having had some sort of seizure last night at youth group. He had one a week ago in France while on a class trip. He has never had them before. About 4 weeks ago he fell and hit his head hard. He told us about it 3 days later after his headache went away. :glare: Soon afterward he started having "twitching" where parts of his body kind of tense up, then relax. It's difficult to tell if these are faked or real (being honest here). They seem to increase when people are around and be rather non-existent when he thinks no one is watching him. Therefore, it didn't seem too serious and aspies are known to be quirky so we dismissed them.

 

A week ago, while he was on a class trip to France, his teacher called and asked if she should take him to the hospital as he was lying on the floor at 11:30pm at night (their time) and twitching. She checked for all typical seizure or health signs (rolled eyes, fever, vomiting) and found none. So she called. We talked and decided to wait it out unless she saw physical signs - thinking he was an aspie on brain overload. He had NEVER had such an incident before and has been overseas before without family. Within an hour (maybe less) he was back to normal except for the twitching mentioned above.

 

Last night the same thing happened. We weren't there to see it, so I'm relating hearsay. He says he feels lightheaded after getting up and can feel this coming on. He tried to go into a dark empty room to be by himself, but a youth leader saw him and followed him. They told me he was twitching, convulsing, felt clammy, and going in and out of consciousness, but when in could offer one word answers to questions and open his eyes. So, they called 911 and us. We met at the hospital.

 

After testing (CAT scan, blood, urine) they've ruled out epilepsy or anything "typical" with seizures, drug use, diabetes and certain chemical imbalances in the blood. His blood pressure was 122/58, but low blood pressure runs in my family and he's not overweight or anything like that. There was one chemical in the blood that was slightly elevated, but I don't recall the name. It's one that occurs when the muscles are being in heavy use. He seemed normal when we first saw him, but still had some of those original twitches with his arms and shoulders, etc.

 

They discharged him suggesting we follow up with our family physician. One thing mentioned was an outpatient EEG to rule out a-typical brain issues, but the doctor didn't seem to think it would show anything (did NOT verbalize this - just my reading between the lines).

 

Is he faking it? Is it something that happens with aspies that we haven't been "introduced to" before? Could it be something physical, and if so, what are we looking for? Would you think it had anything to do with the head injury? (The doctors and EMTs didn't think so.) Is it brain overload of some sort? And if so, how do we handle it?

 

He's skipping school today and when I'm in I plan to talk with his teachers and the school nurse. Hubby will be calling our doctor to see what they (group practice) suggest. The hospital doctor said to treat any episode just like "normal" seizures and that they shouldn't be life threatening.

 

Feel free to say anything that comes to your mind that might be helpful. I'm trying to tap the Hive mind.

 

Oh, and this is the first time that youngest has realized he's an aspie. It kind of feels like he's older and finding out he's adopted (he isn't). In a way he's happy as he says it explains why he's felt different than everyone else (mainly with regards to emotions). But he's not happy he wasn't told before... (sigh)

 

I feel like I have a ton of questions and only a few answers. I'll check in when I can.

[Ottakee]

They said NO SEIZURES but didn't even do an EEG? That doesn't seem right at all. An EEG is standard testing for seizures.

 

I would ask for a consultation with a GOOD Pediatric NEUROLOGIST and get the EEG. You might have to drive several hours to a good pediatric hospital to find one depending on your location but it would be worth it.

 

Treating "normal" seizures doesn't mean just ignoring them but most of the time it means medication.

 

Sorry but I wouldn't trust what the ER doctors told you.

[Murmer]

The most recent statistic I had heard was 40% of children with ASD have seizures too. So it is a known co-morbid. We did an overnight EEG and were shocked to find out our dd was having seizures. But with treatment they are not effecting her as much and the change in our child has been HUGE. I highly recommend that you get an EEG done to really rule out the possibility of seizures. This way at least you can really check the box off and move on to other things.

[pdalley]

Our ped. told me the risk of autistics/aspies developing seizures as teen is pretty high. He's very conservative as far as treatment goes and when my oldest started having something that could have been absent seizures he had the sleep deprived EEG run and then a follow up MRI because there were some irregularities on the EEG.

 

I would consult with a pediatric neurologist before deciding they were or were not seizures.

[creekland]

Ok, just to clarify, the ER dr said no "typical" seizures (the types I've seen at school with kids with epilepsy), but did not rule out a-typical possibilities. He suggested doing an outpatient EEG to see about those. They don't do those in the ER. It sounds like that's the advice from here too. He did say they tested the blood level looking for some chemicals that commonly occur and didn't see anything outside the normal range - except for that one that was slightly elevated.

 

By treating any episode as a "typical" seizure it means following the advice we're given at school should an episode occur there - to keep him safe.

 

Youngest is 16 now. Does that still mean pediatric neurologist?

 

There are no seizures anywhere in our family tree.

 

Thanks a ton for the comments. I prefer feeling more well-informed and right now I feel I know next to nothing about what we might be dealing with.

[TravelingChris]

I don't have an aspie and don't know much about seizures so trust the others on that. I do know that you can't rule out seizures without an EEG. But I just want to give you hugs-:grouphug::grouphug::grouphug::grouphug:. I am going through something like this over here- it is so hard and so I commiserate. My own second child is going through a as yet undiagnosed severe problem. She had to medically withdraw from college, and has gone from a very active, independent, strong girl to a girl that can't walk without a walker, cane or even has to use a wheelchair. One who keeps collapsing, having vision problems, and generally being so weak. I hope you get better answers than we have= we have had a lot of poo-poohing at times by some medical personnel because she is young (18), a female, and severely ADHD along with having anxiety. However, she wasn't anxious at school at all- she was getting straight A's with a decent amount of hard work but not craziness. SHe was making friends at her church and in her fellowship. She was doing a job she loved and was very part time (sound woman at her church, on only some services and practices that she would be at anyway). She had no money problems. There was nothing- and yet some seem to think that while it is a problem, it isn't so bad since she only has been sick less than two months. Two months for a college student is very, very long. SO I will pray for you all and hopefully you will get answers quicker than we have. We are in a waiting situation to see more specialists. If we don't get a diagnosis. we have an appointment at the Mayo clinic in late May. I hope you get an answer.

[Carrie12345]

Yes, I'd call a ped. neuro. NOW. Atypical seizures are so common with aspies. My own son has not had them (knock on wood), but two of my friends have younger aspies with seizure disorders. Both have actually done EEGs (one inpatient, one out) in the past few weeks and needed adjusted meds.

[kroe1]

From the description, I agree that it doesn't sound like a TYPICAL seizure. If the ER got a prolactin level that was normal, then that would further help eliminate seizure as a diagnosis. The outpatient EEG is a good test to get, but unfortunately, it is not helpful either if the abnormal brain activity is not occurring at the time of the test.

 

Is your son on any medicines that might be doing this by building up in his system? Any alternative treatments? Has he had a cold lately? Any candies, licorice, or foods he's suddenly eating a lot of? Is he staying well hydrated? Your description sounds more like dystonic symptoms rather than seizures.

 

Let us know what your doctor says. I hope this doesn't end up being a medical mystery.

 

:grouphug:

[creekland]

Yes.

 

if the sleep deprived eeg shows a seizure disorder, you will most likely be referred to a pediatric epilepsy specialist. Since he's 16, you've got driving to consider, so you want good advice.

 

He's already driving, but needless to say, both we and the dr put a (hopefully) temporary end to that until we get to the bottom of this.

[creekland]

From the description, I agree that it doesn't sound like a TYPICAL seizure. If the ER got a prolactin level that was normal, then that would further help eliminate seizure as a diagnosis. The outpatient EEG is a good test to get, but unfortunately, it is not helpful either if the abnormal brain activity is not occurring at the time of the test.

 

Is your son on any medicines that might be doing this by building up in his system? Any alternative treatments? Has he had a cold lately? Any candies, licorice, or foods he's suddenly eating a lot of? Is he staying well hydrated? Your description sounds more like dystonic symptoms rather than seizures.

 

Let us know what your doctor says. I hope this doesn't end up being a medical mystery.

 

:grouphug:

 

Prolactin was normal.

 

No known allergies. No meds or alternative treatments. No recent illnesses of any sort. Easter candy has been recent, but that's post France when the first episode hit. Nutella? That's been a recent addition and one he had a lot in France. That's the only "new" thing I can think of.

 

What are dystonic symptoms?

 

In the meantime, we'll axe Nutella - just in case.

 

Thanks for your thoughts! I really want to brainstorm anything and everything.

[creekland]

Take note of the DMV regs..some states ban driving for a year after a seizure.

 

Ours bans it and the ER dr purposely didn't label it a seizure due to that (and nothing physical coming up indicating seizure), but he made sure we'd do everything possible to get to the bottom of what it is prior to letting him drive again. Since we care about his safety (and that of others on the road), we won't be letting him drive. Even if the dr hadn't mentioned it, to us, it's common sense. But, I appreciate him not making it official in case it's not a seizure. Then he'd be banned from driving for a year (instead of a few months) needlessly.

[Spock]

I am going through something like this over here- it is so hard and so I commiserate. My own second child is going through a as yet undiagnosed severe problem. She had to medically withdraw from college, and has gone from a very active, independent, strong girl to a girl that can't walk without a walker, cane or even has to use a wheelchair. One who keeps collapsing, having vision problems, and generally being so weak.

 

Have they considered myesthenia gravis? My husband started with extreme tiredness (which we overlooked at the time), followed by double vision, followed by weakness in arms, legs, and throat. His also progressed to a complete inability to swallow or breathe on his own.

 

Myesthenia gravis is caused by the muscles not receiving (some or all of) the signals from the nerves to move, and typically the first signs are tiredness and weakness. It can affect any or all of the voluntary muscles, but does not affect involuntary muscles.

[JFSinIL]

An EEG is required - best to get an unmedicated (some times they give meds to calm folks down when the doohickeys are glued on - this can mask some types of abnormal activity so best to NOT use any medication) and the longer the better. A one hour EEG is useless if the person does not have an episode during that time. You can get portable, take-home units that allow a 24-hour EEG (all my kids have had them). Impossible to rule out epilepsy or any treatable abnormal brain activity w/o an EEG.

 

Does sound like his bonking his head may have trigger this, too.

 

http://www.sleepmed.md/page/2190

we (our pediatric neuro) used Digitrace.

[Whereneverever]

Sounds like a psychogenic seizure. I'm not a doc, though, and you need an EEG to rule out actual seizures.

[SailorMom]

Yes.

 

if the sleep deprived eeg shows a seizure disorder, you will most likely be referred to a pediatric epilepsy specialist. Since he's 16, you've got driving to consider, so you want good advice.

 

Keep in mind - this will only show seizure activity if there is a seizure during the test.

The reason they do it with sleep deprivation is because sometimes a tired brain is more likely to have that activity.

If the EEG doesn't show anything, that means the patient did not have a seizure during the test, nothing more.

[creekland]

How connected are prolactin levels to seizures? Is it a definite or a most of the time thing?

 

I just talked with our school nurse and she suggested anxiety attacks as a possibility. She said sometimes they can be triggered by tiredness, overstimulation, and/or feeling lightheaded.

 

Thoughts?

 

And I do still wonder if his fall - hitting his head and having a headache for 3 days (his words - told us AFTER he felt better) - could be connected at all. It seems awfully strange to have it happen somewhere in the week prior to the twitching starting and NOT be connected for someone who has never had any sort of this thing happen before.

 

But, I'm not a medical person, so I'm guessing.

[creekland]

Sounds like a psychogenic seizure. I'm not a doc, though, and you need an EEG to rule out actual seizures.

 

I just looked this up here:

 

http://www.epilepsy.com/epilepsy/seizure_psychogenic

 

and it sounds like it fits by what is physically seen and the bloodwork, but it never really says what to do about them. Counseling? Can they be related to his Aspie-ness?

 

If an EEG only "tells" during a seizure that sounds like it would come up blank unless these "seizures" become more common. So far he's had 2 in 8 days - more common than I'd like, but not what I'd call reliable enough to predict.

[Whereneverever]

Keep in mind - this will only show seizure activity if there is a seizure during the test.

The reason they do it with sleep deprivation is because sometimes a tired brain is more likely to have that activity.

If the EEG doesn't show anything, that means the patient did not have a seizure during the test, nothing more.

 

Actually, that's not always true. Some people show abnormal activity even when not actively seizing.

[Whereneverever]

I just looked this up here:

 

http://www.epilepsy.com/epilepsy/seizure_psychogenic

 

and it sounds like it fits by what is physically seen and the bloodwork, but it never really says what to do about them. Counseling? Can they be related to his Aspie-ness?

 

If an EEG only "tells" during a seizure that sounds like it would come up blank unless these "seizures" become more common. So far he's had 2 in 8 days - more common than I'd like, but not what I'd call reliable enough to predict.

 

Treatment is mostly psychological, but first you need a neurologist to firmly rule out actual seizure activity.

[creekland]

My ped neuro and my ped epilepsy specialist have a different opinion. There are particular types of epilepsy that have a signature brainwave pattern in absence of a seizure that are indicative of a seizure disorder, Juvenile Myoclonic Epilepsy being an ex.

 

OP be aware the lead time on the appt may be 3 months. You might ask to be on the call-me-if-there-is-a-last-minute-cancellation list.

 

Actually, I've been contemplating (if it's not life threatening), seeing if we can get to the bottom of things this summer and not interrupt his school year more, so a delay could be welcome - again - with the bottom line being if it's not life threatening.

 

I've been reading more on that epilepsy website between checking this thread (fortunately, work today is 100% limited supervision, so doesn't require much of my attention or time). There appear to be a couple of things on there that could be an issue - including the recent brain injury.

 

I feel I have more questions than answers, but at least some of the worst of my thoughts are allayed and I feel like I'm making progress understanding some of the possibilities.

[gardenmom5]

My advice would be to keep looking. I'd have him checked by a *good* chiropractor -especially since these symptoms started after a fall/head impact.

 

My 1ds fell - with NO apparent injuries and the symptoms actually started a number of weeks later. anyway - I was taking him in to be checked, he had reasonably extensive testing with no cause found, and was sent to a pediatric nuerologist who found nothing. He was prescribed a beta blocker that did prevent the symptoms, but sure didn't "cure" him. This went on for several years.

 

I started to a chiropractor for my neck. I mentioned my son, and his first question was "did he fall?" well, yeah. He took at lot at his x-rays that were taken by his western med dr's who never mentioned he had a healed fracture on his vertebra. It was pinching a nerve. The chiropractor was able to actually "cure" him by regular adjustments - about once a month. NO meds and completely asymptomatic. (before if he didn't have meds - we'd be doing ER runs.)

[prairiewindmomma]

I would start keeping track of everything and if you can catch it on video, so much the better to take to the neuro's office.

 

Here the transition of care starts at age 18....so he could definitely be seen by the ped neuros here.

[creekland]

I'm finding out from teachers that he complained about a bit of dizziness, headaches and similar after his fall. They encouraged him to tell us about it, but he didn't.

 

I really am wondering if they're related.

 

None of his teachers see him as the type to be purposely making this up. One never knows how the mind works, but at this point, I really am leaning toward something physical.

[MomatHWTK]

I'd follow up with non-ER docs. :grouphug:

[EKS]

They said NO SEIZURES but didn't even do an EEG? That doesn't seem right at all. An EEG is standard testing for seizures.

 

I would ask for a consultation with a GOOD Pediatric NEUROLOGIST and get the EEG. You might have to drive several hours to a good pediatric hospital to find one depending on your location but it would be worth it.

 

Treating "normal" seizures doesn't mean just ignoring them but most of the time it means medication.

 

Sorry but I wouldn't trust what the ER doctors told you.

 

:iagree:

[QueenCat]

They said NO SEIZURES but didn't even do an EEG? That doesn't seem right at all. An EEG is standard testing for seizures.

 

I would ask for a consultation with a GOOD Pediatric NEUROLOGIST and get the EEG. You might have to drive several hours to a good pediatric hospital to find one depending on your location but it would be worth it.

 

Treating "normal" seizures doesn't mean just ignoring them but most of the time it means medication.

 

Sorry but I wouldn't trust what the ER doctors told you.

 

:iagree: An EEG, not a CAT scan is what is used to detect seizures.

[Ali in OR]

One more thought about the first episode in France:

 

Sleep deprivation is a major trigger for seizures. Being short on sleep is almost a guarantee that our dd will have a seizure. The time change and jet lag could have messed up his sleep enough to lower his seizure threshold if there is an underlying seizure disorder. I agree with all of the previous posters that you need to see a pediatric neurologist and get a sleep deprived EEG. You need to know if there *IS* an underlying disorder. It could be something else, but you need to rule this out if possible.

[creekland]

His next Dr appt is next Friday and that's probably just to get a recommendation for a specialist. We'll see what happens until then. If it is related to an injury, hopefully his brain is busy repairing itself.

 

He's rather bummed that he can't go to an all-nighter that was planned for tonight.

 

I really feel badly for him.

[mumto2]

Make an appointment with the most recommended pediatrics neurologist you can find. You will probably wait for it. But you will have an answer that you are confident of. Plus if symptoms disappear you cancil.:grouphug:

[asta]

My advice would be to keep looking. I'd have him checked by a *good* chiropractor -especially since these symptoms started after a fall/head impact.

 

My 1ds fell - with NO apparent injuries and the symptoms actually started a number of weeks later. anyway - I was taking him in to be checked, he had reasonably extensive testing with no cause found, and was sent to a pediatric nuerologist who found nothing. He was prescribed a beta blocker that did prevent the symptoms, but sure didn't "cure" him. This went on for several years.

 

I started to a chiropractor for my neck. I mentioned my son, and his first question was "did he fall?" well, yeah. He took at lot at his x-rays that were taken by his western med dr's who never mentioned he had a healed fracture on his vertebra. It was pinching a nerve. The chiropractor was able to actually "cure" him by regular adjustments - about once a month. NO meds and completely asymptomatic. (before if he didn't have meds - we'd be doing ER runs.)

 

I'm glad your son is ok. However. There are a whole lot of things out there in "did you fall" land that could land you dead if you went to a chiro.

 

I hit my head in February. It turned out I had a brainstem concussion (who knew? never heard of that one). I'm still not right. Vision is wonky. Don't know if it will ever be right again. If I'd gone to "get adjusted" - because let me tell you, my neck HURT! I could have ended up dead. Apparently, a brainstem injury is the one that messes up all your autonomic functions like breathing and your heart, etc. It wasn't something that showed up on the MRI - it was something they determined by physical exam.

 

One more thought about the first episode in France:

 

Sleep deprivation is a major trigger for seizures. Being short on sleep is almost a guarantee that our dd will have a seizure. The time change and jet lag could have messed up his sleep enough to lower his seizure threshold if there is an underlying seizure disorder. I agree with all of the previous posters that you need to see a pediatric neurologist and get a sleep deprived EEG. You need to know if there *IS* an underlying disorder. It could be something else, but you need to rule this out if possible.

 

Being up at altitude in a plane (especially for long periods) will bring on a seizure (I've never understood it, I just know it will, and I've experienced it).

 

And you're absolutely right about jet lag and time changes - I always have to add extra emergency medication to my med cocktail to head it off at the pass.

 

Prolactin was normal.

 

No known allergies. No meds or alternative treatments. No recent illnesses of any sort. Easter candy has been recent, but that's post France when the first episode hit. Nutella? That's been a recent addition and one he had a lot in France. That's the only "new" thing I can think of.

 

What are dystonic symptoms?

 

In the meantime, we'll axe Nutella - just in case.

 

Thanks for your thoughts! I really want to brainstorm anything and everything.

 

Dystonia

 

Are you sure about the meds, etc.? Ask if he took anything while in France for a headache or stuffy nose or anything.

 

Sounds like a psychogenic seizure. I'm not a doc, though, and you need an EEG to rule out actual seizures.

 

A person can have both.

 

Additionally, a person can have seizures that result from an injury to their brain, or to their spinal cord, from cancer somewhere, from diabetes, from an imbalance in their electrolytes, from an endocrine disorder...

 

Seizures are a symptom, not a diagnosis.

 

 

Asta

[creekland]

I hit my head in February. It turned out I had a brainstem concussion (who knew? never heard of that one). I'm still not right. Vision is wonky. Don't know if it will ever be right again. If I'd gone to "get adjusted" - because let me tell you, my neck HURT! I could have ended up dead. Apparently, a brainstem injury is the one that messes up all your autonomic functions like breathing and your heart, etc. It wasn't something that showed up on the MRI - it was something they determined by physical exam.

 

Being up at altitude in a plane (especially for long periods) will bring on a seizure (I've never understood it, I just know it will, and I've experienced it).

 

And you're absolutely right about jet lag and time changes - I always have to add extra emergency medication to my med cocktail to head it off at the pass.

 

Dystonia

 

Are you sure about the meds, etc.? Ask if he took anything while in France for a headache or stuffy nose or anything.

 

A person can have both.

 

Additionally, a person can have seizures that result from an injury to their brain, or to their spinal cord, from cancer somewhere, from diabetes, from an imbalance in their electrolytes, from an endocrine disorder...

 

Seizures are a symptom, not a diagnosis.

 

Asta

 

Thanks Asta - I wonder if he ended up with something similar. He tells us everything is "normal," but he has had more headaches since then plus he did take some Ibuprofen once in Paris for a headache, but I don't think it was the same day as the quasi-seizure. I'll have to ask. He seems normal in all aspects except the occasional twitching and the two quasi-seizures. I haven't seen either one of those, but other adults did.

 

The only "new" thing he drank in Paris was Coke Zero. We tend to not do artificial sweeteners here, but I'm not religious about it, so we can eat/drink them when we visit others even if we don't have them in our house. It wouldn't explain the episode here a week after the one in France. I did ask him if he thought he was now allergic to Wednesdays...

 

He also had more coffee in Paris than he did here (we don't have it at our house, but he drinks it out sometimes). I just don't really see a connection to that.

 

They eliminated diabetes, electrolytes, and (hopefully) cancer by the blood/urine tests and brain scan. Those were all things they were actively looking for (as well as drugs). Nothing came up for any of them - and we're thankful! I think neural comes next, then, if necessary, cardiac. Beyond that I haven't a clue. First we have to go to the family doc (next Friday) for referrals.

 

I keep sort of hoping it will just all go away... He seems so normal most of the time. Sometimes I wonder if it's all in MY mind (maybe that's because I didn't actually see the episode they called 911 about).

[creekland]

Adding an update after the neurologist visit and EEG:

 

It IS epilepsy - surprising everyone who has seen the other results, etc. We go back Monday to find out more. The twitching fits what I see online. The larger episodes do not, but are likely connected - just very unusual/rare.

 

I gave a more complete update on the high school board here:

 

http://www.welltrainedmind.com/forums/showthread.php?t=373484

[MomatHWTK]

:grouphug: