Really reaching here... Experience with seizures?

[amo_mea_filiis.]

I am so scared to start ds on behavior meds, but I'm not really sure why. I guess it's mostly because he had reactions to 2 meds and is not accurately diagnosed.

 

His therapist today was watching some very cycling behaviors.

 

His therapist was here for an hour and ds literally went from calming sitting with dd watching netflix, to freaking out saying he wished she were dead (never ever a real threat, no intent, no plan), and back to watching the computer. There was a trigger that escalated things, and i dont remember the initial trigger.

 

The therapist sort of suggested childhood bipolar and i can sort of see this, especially with our history of mental illness.

 

However, regardless of any mental illness suggested, there's always something, usually a key piece, that does not seem to fit. ADHD? Sure but not really. Autism? Nope. Rage disorders? Maybe. But again, not really fitting. He's aggressive, but not violent.

 

I restrained him during today's tantrum, but only because i dont really want to know if he would hurt dd. But the flip side is that these two are still very much alive after spending 12+ hours alone for 9 days. They figured it out somehow!

 

So bipolar and brain makes me wonder if all these behavior inconsistencies are somehow seizure related. He does sleep more than most kids i know and know of (12-13 hours consistently). He had some intense and very weird night terrors that included him peeing on the floor, walking around screaming, and often chewing. He would also go back to sleep after the night terror and wake up "normal." He even night terrors during naps!

 

But, could 3 sleep studies, and a sleep deprived EEG all miss seizure activity? He was, surprisingly, in a good mood the day of the EEG. Maybe he needs one on a bad day?

 

I know I'm reaching here. Want to add to my reaching ramblings?

 

I'm going to get his butt in bed.

[Maverick_Mom]

My son has epilepsy, in addition to Asperger's and ADHD, so I've got a bit of experience with seizures.

 

Could sleep studies miss seizures? Sure. There is something called "subclinical seizure activity" that occurs under the radar, so to speak. An EEG could miss it, too. I don't think it's highly likely, but it can happen. My son had a perfectly normal EEG after he was weaned off his seizure meds this past year. He'd been seizure-free while on meds for years, and the doctor felt that it was a good idea to do a trial withdrawal. So ds was gradually weaned off his meds, and he then had a normal EEG. Then three months later, he had a major seizure -- and he's back on meds now. Why didn't the EEG give any indication that there was still a problem? Because an EEG is simply a snapshot -- it shows what's going on in the brain during one window of time. And if there's underlying seizure activity that is infrequent, an EEG might not catch it.

 

I'm assuming that since your ds has had EEGs, he's seen a neurologist. Has there been any diagnosis? You also sound very sure that your ds isn't on the autism spectrum. Are you sure? My son has some of the same behaviors as yours, and I've been so frustrated because he just doesn't fit neatly into one category. Plus, his different issues overlap. One doctor thought that his attention issues were really secondary to his Asperger's; another doctor felt that while his irritability and aggressiveness (especially verbal aggressiveness) could be due to childhood bipolar, it was more likely that they're due to the frustration and anger that stem from his Asperger's. I went from wanting specific diagnoses to not caring WHAT they called it -- I just wanted solutions. We're still working our way through this.

[amo_mea_filiis.]

Thank you.

 

He's had one EEG, but has seen 4 neuros. Original, second opinion, moved, part of new team. They've only ever dx'ed "surface" problems. Ex. oh he's hyper, ADHD. Barely talks, spectrum and language. Etc.

 

He was seen at the autism research center and they really feel that he is not on the spectrum. They spent 5 hours with him. Something no neuro has ever (or would be able to) done. Most dxs he's gotten have come after short observations.

 

The only "dx" the research center made was complex and language disorder. When we spoke, she stressed the "complex" side of him.

[Murmer]

We had to have an overnight EEG to discover that my dd was having seizures...even after the overnight EEG they didn't see anything right off that said seizure and didn't carefully go over the results until we showed up for our follow up where they discovered she had seizure that increased while she was sleeping....1 week after upping her med dose the 2nd time all of her violent aggressive behavior stopped. 1 year later and we are a totally different family because of being able to treat her seizures. So if you feel that there may be seizures issues I would push for an extended EEG, our dr said adults can have up to 5 days for EEGs, don't know why but that is what he said. Good luck hopefully you can find some answer.

[amo_mea_filiis.]

Thank you.

 

After he sees the neuropsych, i may look for a new neurologist (or just wait for the mass general docs). Maybe once i have scores on how scattered his abilities are, an MD will takes things more seriously.

 

I will head to the hospital's records dept on Thursday and get his EEG records.

[geodob]

Amo, please forgive me, though I would like to come back to your son's lowered cerebellar tonsil?

As the complexity of consequences that can flow from this, needs to explored?

Where a slight problem with neuro-science, is that it entirely focused on the brain.

Which excludes any consideration of the 'bony structure' that contains the brain?

So that they know little more than that the brain is contained within the skull.

Where for example, few neurologists are aware of how 'brain inflammation' can cause a dislocation of the skull's plates?

With consequences?

So that when we come to the critical juncture between the brain and the spinal column?

We have a very precise 'bone structure', that contains the neural wiring that connects the brain to the spinal column.

Where this might be viewed as point, where many streams converge to form a river,

But a river full of canals for each stream.

Though these 'canals' are contained within a very precise 'bone structure' that direct the flow of the streams from different brain regions.

 

But different malformations of the 'bone structure', will have various downstream effects?

So that who do we attribute 'blame' to ?

Where the problem is that a neuro-psychologist has no understanding of the effects of 'bone structure' on flow of communications?

Which confuses cognitive thinking, with the ability to demonstrate it?

 

Where the real issue, is the distinction between cognitive thinking, and the ability to demonstrate it?

[amo_mea_filiis.]

The chiari institute should have some insight into the cerebellar tonsils.

 

Waiting to hear back is a pain because i can do nothing but wait. While i wait, i wonder whats important, what goes together and what doesn't.

 

He had frequent high fevers as a baby. Does that mean anything? Did his head banging cause damage? Did damage cause the head banging? Or does it all mean nothing and this poor kid is just "complex," never to be figured out and understood? If not a chiari or cerebral palsy or muscle disorder, why does an extremely active kid need to stretch on purpose? Why does he keep getting tight?

 

I've no clue how, or even if, seizures past or present could play any part at all in any of his problems, but without cerebellar damage (other than the low tonsils), will CCAS fit? Will it even tell us anything?

 

I want a neuro and or neuropsych to just spend a month with us and observe and interact with ds on his good days and bad days.

 

Knowing the what and why will drive the courses of action. I've never been interested in curing or "fixing" him, but that was with a spectrum diagnosis. We plodded through thinking it is what it is. But what if there is something to lessen his emotional reactions? An actual "thing" to treat, like seizures.

 

We have had a long and very hard 8 years. I'm scared of what 11, 13, 16, 18 years old and beyond brings. He is not on a path to a happy and wonderful life. He's also not disabled enough that my life goal needs to be the best long term care facility.

[dbmamaz]

my middle son was 'complex' . . . atypical antipsychotics turned out to be a miracle for him. but i have a friend who went through years of various therapies before discovering most of her sons problems were subclinical seizures. my youngest - food was a big trigger, esp any artificial anything, so that might be worth exploring, too

[geodob]

In regard to his 'head banging', I might ask how he actually did this?

For instance whether he would hit his head with something, or swing his head to hit something?

Where the problem is that their are some bony protrusions on the inside of the skull.

So that when the head is swung to hit something? If their are any bony protrusions in that part of the skull? Then the brain is pressed against it, causing damage to the brain.

But this is very relevant to the cerebellum, where their is a significant spiky protrusion at the back of the skull.

Which is why it is so dangerous to fall back and hit the back of the head on the ground.

Where the damage that this bony spike causes to cerebellum, can result in degrees of paralysis, or even fatal, as the ability to breathe can be lost.

 

So of particular concern, would be if his 'head banging', involved the back of his head?

[amo_mea_filiis.]

We tried an atypical antipsychotic twice with bad results. :(

 

His head banging starting around 2 weeks. He'd rock and slam his head side to side in his car seat or swing.

 

Around 3 months, when he could lift his head, he starting banging the back. I put padding it everything he sat in; highchair, car seat, swing.

 

Around 9 months, he was able to roll from back to front. He would now sleep on his belly and bang his head on the sides.

 

When he was walking, around 13 months, he would sit on the head of his bed and bang his head back into the wall.

 

Now his head banging is limited. He still bangs to go sleep while sleeping on his belly, and he still bangs in the car when he's falling asleep. He currently bangs the back and sides of his head.

 

His head shape is normal. His head size is slightly large, but still on the charts and in normal range. At one point his head was at the 99th%ile.

 

 

[amo_mea_filiis.]

His diet is already pretty "clean." At least as much as a picky kid can tolerate. He absolutely does not get numbered food coloring, and i really think i see a difference when he eats any.

 

Eta: gluten is limited, but there are times when he'll have a pre packaged muffin or other junk, but he still stays away from colors.

[Tiramisu]

This may have nothing to do with anything, but reading about cerebellar tonsils, bony structures, and muscle tightness reminded me that when my dd's spine started slipping apart, the most obvious symptom was the loss of flexibility due to muscle contraction which had been caused by compression of the nerve roots.

[amo_mea_filiis.]

Spine slipping apart?! That sounds seriously scary!

 

Ds has always been tight. He gets better while in physical therapy, but tightens right back up weeks after discharge. I try to stretch him at home, but I'm never sure where to focus. Back? Hips? Hamstrings? Heel cords?

 

I'm debating on asking his primary for a PT script to go monthly. Maybe if the PT re-evals monthly and gives us a new plan, i can keep him looser.

[geodob]

Though it might be more helpful to understand the 'rocking'?

Where holding the head still, involves opposing muscles maintaining a precise level of tension.

Where one muscle group control the back/ forward motion of the head.

While another muscle group controls side to side.

 

But a problem occurs when opposing muscles can't be held in state of related tension?

Where this balanced control, could be understand in terms of a See-saw, being held in state of balance, between opposing sides.

But when a state of balance can't be maintained? Then this is resolved by rocking back and forth.

 

Though the 'banging', against something, could be looked at as a reference point to rock back from?

In the same way as when your feet touch the ground, when you're on a see-saw?

 

But it was also interesting that 'now his head banging limited, but still occurs when he's falling asleep'?

Where the distinction could be that he has developed a degree of conscious control of the associated muscles.

To cope with not having automatic control.

But notably as we are falling asleep, we lose conscious control of our muscles.

So that this transition of control as he falls asleep, could be why it emerges again,at this stage?

[Tiramisu]

Spine slipping apart?! That sounds seriously scary!

 

Ds has always been tight. He gets better while in physical therapy, but tightens right back up weeks after discharge. I try to stretch him at home, but I'm never sure where to focus. Back? Hips? Hamstrings? Heel cords?

 

I'm debating on asking his primary for a PT script to go monthly. Maybe if the PT re-evals monthly and gives us a new plan, i can keep him looser.

 

I'm sorry. I absolutely don't think your ds's spine is slipping apart. I hope I didn't make you think that. The previous posts made me wonder if there could be compression of the nerves somewhere. In our case, it was just from the spine issue that developed. It wasn't always there, and it's been repaired.

 

Are the tight muscles only in the lower body? Does your PT have any insight? Have you ever thought about it in connection with the bowels, or has a neurologist made any connection? Any bladder trouble?

[amo_mea_filiis.]

I didnt think spine falling apart, but that's a scary term!

 

A chiari malformation is compression, so that's not too far off to think (*if* it even it chiari).

 

His upper body is normal strength, but low-normal tone. His hands are a little weaker.

 

His lower body is tight. I'm not sure about strength and tone specifics. PT had nothing to offer.

[Tiramisu]

Has he ever had an MRI of his spine? Have you ever noticed a tiny indentation (sacral dimple) or other mark on his lower back/rear end area?

[amo_mea_filiis.]

Only brain MRI. I've never noticed an indentation, but i will look for one when i bathe him tonight.

[Tiramisu]

Google "sacral dimple." You can look at images. They can be very subtle. They usually mean nothing but can occasionally indicate an abnormality in the lower spine, which would also be insignificant unless there were issues with the bladder, bowel, or weakness in the legs. I never noticed a dimple and my dd would have been mortified if I tried to look, but once I saw the pictures of the dimples, I had a memory that at least one of my dc had one. I only found out about the significance of sacral dimples after the spine problem developed as a consequence of the underlying abnormality and it had already been repaired.

[Ottakee]

I can't comment on the head banging thing but I have a very complex daughter as well.

 

The neurologist finally went with complex partial seizures even though most of her EEGs have been normal. He said there are parts of the brain where the EEG does not record.

 

As to the seizure meds, there is some speculation that bipolar and seizures can be related as most of the top mood stabilizers used for bipolar are seizure meds. For us, Lamictal has been a wonderful med. She takes that along with Keppra XR (another seizure med) and Risperdal (an atypical antipsychotic). With these meds she is very stable. She had some autistic tendencies (and still does at times) was SUPER DUPER hyper active. Had some major meltdowns. Was very irritable and had big mood swings. Also anxiety.

 

Now she is my easiest kiddo for the most part.

 

If a neurologist or psychiatrist wants to try a mood stabilzer with him it would certainly be worth a shot. Lamictal is great but can take a while to work as you have to start low and go up slowly. That in combo with Lithium was the dynamic duo for her but she had to go off the lithium due to some ingredient in the generic when they stopped making the name brand.

[amo_mea_filiis.]

Any bladder trouble?

 

Not sure if it is a trouble, but he does still sleep in diapers with no end in sight. Urologist and neurologist were not concerned because of age, disabilities, etc.

[Dmmetler]

Another possibility-there are other disorders which cause intermittent seizure-type situations, including behavioral changes without necessarily leading to an abnormal EEG (probably, there would be abnormal waves during the actual attack, but not at other times),. In my case, it was a form of migraine that, for several years right at puberty, and again during pregnancy, caused psychomotor and absence seizures. It's more common in girls than in boys, though, since it is usually hormonally linked (not looking forward to menopause-it's likely I'll go out of control and need to go back on seizure meds again during that transition).

 

Depakote and phenobarbital both helped me at various times.

[amo_mea_filiis.]

*If* ds's scattered skills are in any way related to seizures, is this something that a neuropsych will be able to pick up on?

[Dmmetler]

It's going to depend, I suspect, on the neuropsych. I know that the fact that I did have gaps of memory loss (and that, in my case, there was a pattern to them that my teachers and the like reported) was one thing that led my pediatric neuro to recognize that I was actually having seizures, despite normal EEGs when they were tested. Mostly because, for the most part, they did the EEGs first thing in the morning, and I always seemed to have seizures in the afternoon/night. Don't know why-just that was how my brain was working (or not working properly) for about 6 years. Some really seem to just be trying to find a quick, easy label, and some are the Dr. House of Neurology-the ones who really really seem to get into investigating complex, multi-layered issues and trying to find root causes.

[Dmmetler]

It's going to depend, I suspect, on the neuropsych. I know that the fact that I did have gaps of memory loss (and that, in my case, there was a pattern to them that my teachers and the like reported) was one thing that led my pediatric neuro to recognize that I was actually having seizures, despite normal EEGs when they were tested. Mostly because, for the most part, they did the EEGs first thing in the morning, and I always seemed to have seizures in the afternoon/night. Don't know why-just that was how my brain was working (or not working properly) for about 6 years. Some really seem to just be trying to find a quick, easy label, and some are the Dr. House of Neurology-the ones who really really seem to get into investigating complex, multi-layered issues and trying to find root causes.

[amo_mea_filiis.]

Thank you.

 

We really need to find the Dr House of neurology.

 

Maybe the neuro at mass general is the way to go.

[amo_mea_filiis.]

Google "sacral dimple." You can look at images. They can be very subtle. They usually mean nothing but can occasionally indicate an abnormality in the lower spine, which would also be insignificant unless there were issues with the bladder, bowel, or weakness in the legs. I never noticed a dimple and my dd would have been mortified if I tried to look, but once I saw the pictures of the dimples, I had a memory that at least one of my dc had one. I only found out about the significance of sacral dimples after the spine problem developed as a consequence of the underlying abnormality and it had already been repaired.

 

It's very possible I'm seeing things that are not there, but he does seem to a little bit of an indent right at the top of his tush crack.

 

I'll note it and make sure it's brought up when we go to neuro.

[Tiramisu]

It's very possible I'm seeing things that are not there, but he does seem to a little bit of an indent right at the top of his tush crack.

 

I'll note it and make sure it's brought up when we go to neuro.

 

Yes, they can be so tiny, minor, insignificant looking that you wouldn't even notice them, much less suspect that they could indicate a problem.

 

There are other boardies here who have had experiences and could guide you. Try the chat board. I think they will tell you that you have to insist on an MRI of the lower spine, even if a doctor doesn't take you seriously at first. This may be worth a phone call or a visit to your pediatrician, unless you are scheduled to go into the neuro soon because it can be something treatable rather than something you just deal with. KWIM?

[Alenee]

Amo,

 

I replied to your other thread about the toe-walking...now that I read this, I'm certain you need to get that MRI done. I'm dumbfounded that your neurologist didn't think about Tethered Cord with his toe-walking and bladder issues. I'd find a new neurologist!

 

I can't really add anything about the seizures. I hope you find the answers you seek. :grouphug:

[amo_mea_filiis.]

Alenee- we've run into a problem with Drs only worried about autism.

 

If they say he has autism, he also has sensory issues that cause the toe walking, and being delayed is why he wets the bed.

 

If one says no autism, they may also say he's fine or "just a boy." Some may acknowledge the tightness, but most do not.

 

I'll go post on the chat board about all of this.

[Alenee]

Amo, not that you haven't done this...but this is the time then where you put your mommy foot down and demand what your son needs. YOU are his advocate. No one else will look into the extras if you aren't pushing back, and pushing hard. :grouphug:

[Tiramisu]

Toe walking? I don't remember the toe walking thread.

 

My dd with SPD only started toe walking after her spinal issue developed. She didn't have a tethered cord, though. After her problem was corrected, her flexibility improved and she walked normally again. I'm curious if this would be the same with a tethered cord. Do things loosen up once it's fixed?

[amo_mea_filiis.]

My toe walking thread was about shoes. I thought he wasn't te walking anymore until i mentioned to his occupation therapist that it looked he was slightly limping again when running. She looked at the bottom of his shoes and its so obvious that he toe walks.

[amo_mea_filiis.]

Amo, not that you haven't done this...but this is the time then where you put your mommy foot down and demand what your son needs. YOU are his advocate. No one else will look into the extras if you aren't pushing back, and pushing hard. :grouphug:

 

We were in a groove of figuring things out. Then a psychologist accused me of munchausen's and s@xual abuse. I got that cleared and have started to seriously look into his problems again. The biggest hurdle has been the Drs not doing anything. His current dr has just listened, but has not done anything.

 

I may write up a list and ask her to actually address things.

 

Around here, clearly autistic kids are being labeled adhd and never seeing more than the abuse accusing psychologist and getting a poor behavior plan.

 

The other problem is the searching vs doing. We need to live day to day. Get school work done. Go to therapies. It's hard to balance everything.

 

If he has a tethered cord, is there a point to our stretches? If he has seizures, will any amount of behavior therapy help his behavior? Things like this.

 

It was all a lot easier to manage when he was considered autistic, but now no one even knows and I'm the only one looking. I have to be the researcher and present topics to his dr(s) who may or may not confirm or even listen and consider.

 

He spent nearly 4 years with the same the neurologist back in NY and she never even considered imaging or real problems. Her reports are ridiculous.

[wapiti]

If you discuss with your ped the sacral dimple (or any other odd skin markings/hair tufts around the lower spine) combined with the bladder issue and lower tightness, perhaps the ped will be willing to order the MRI to look for spinal cord issues. I haven't followed your situation closely so I'm not sure I understand the extent of the bladder issue, but with all the trouble you are going through right now to track down answers, it's at least worth considering. I'm not familiar with toe walking but apparently it's also a significant sign of the possibility of a tethered cord as well as some other issues (muscular issues, cerebral palsy, etc.)

 

FWIW, my kids' sacral dimples appear far less pronounced now that they are older than they looked when they were babies. (I have one with a skin tag who had a tethered cord due to a filum lipoma. His tether was surgically released.)

[amo_mea_filiis.]

I will see about talking to the regular dr.

 

I'll make a list and ask her to actually address, not just agree or disagree.