Absence Seizures???

[Pookybear66]

Hi all!
Hope everyone is having an okay Wednesday. I had a meeting at DS's school today. His teacher says there are still issues involed with him not completing work and having trouble with written assignments. Also he seems to be inattentive in class. (He has an IEP for an Learning Disability (LD) in reading). So even with modifications he is till having trouble.

So first thing they mention (aluded to in phone conversation last week) was that he is spacing out from time to time. The teacher called the nurse in and the think he is having absence seizures. I know a bit about these, however was wondering if anyone else had experiences with them. I told them I would call pediatrician and look into getting him tested. They recommended EEG. I want everything to be okay. DS doesn't need more medications or tests as he was put through a lot when he was born.

Also, I had questions about his accomodations. They had an Occupational Therapist (OT) check him and are awaiting the test results. He is getting reading/spelling help already. They are keeping him on grade level stuff only (I hate to use this term but..) "dumbing it down" for him. They say he is getting all the help he can yet he still struggles. I noted that he is frustrated because he knows the stuff but just cant write it down. The school psychiatric wants to know why he doesn't seem motivated. Would you be if everything was difficult for you?

I understand they have many other kids to teach as well but this just irritates me that he is still struggling while they are supposedly conforming to IEP mods. So help! I need to not be scared of getting him tested and finding that there are other things wrong with him that haven't been adressed yet. I don't want him on medications! I want him to do the best he can, but what if this is the best? He is very smart and will respond to questions with a verbal deluge of information. Yet, he can't read/ spell/ or write about things well.

 

[susiestar]

My daughter has absence seizures. The medication (antiseizure medication Keppra) that she is on makes a HUGE difference in how she is able to learn. With an absence seizure the person is just not "there" for however long the seizure is. They CAN be hard to find on the EEG, so I recommend a sleep deprived one (you catch more seizures that way).

It took us a YEAR to get Jessie to teh therapeautic level of Keppra. We had to start very low and go very slow. It may be that he has a seizure disorder that is behind much of the problems. Keppra is not the right medication for everyone.

I strongly recommend getting in to a pediatric neurologist ASAP. A pediatrician is NOT the right person to diagnosis a seizure disorder OR to treat it. You MUST get in to see a pediatric neurologist. It is VERY IMPORTANT.

As for school, call another IEP meeting after you figure out some specific and measurable things to support him (others will have ideas, also check out the Special Education forum) and PUSH for those. If your son can type (or keyboard) then have them give him an Alphasmart. I think I described one to you recently. Otherwise, you can learn about them through a google search (my hands are too bad to describe it again).

Good luck.

 

[gcvmom]

I think the fear of finding out something MORE is at play here would be dwarfed by the CONSEQUENCES of leaving any other possible issues UNTREATED. Surely it would be better to know and be able to act and improve your son's life than to play ostrich and just hope things get better, or continue to be frustrated with him and the school?

EEGs are not invasive other than the sensors that are applied to his head -- and you could conceivably have fun with him on this: make up a fun/crazy story for him to think about that incorporates the equipment they'll be using that day... something akin to playing video games with just his thoughts... or transmitting his thoughts to a supercomputer that will paint a picture... (and of course, this is all make-believe), etc.

Also, unless he actually has a seizure during the test, a negative outcome does not rule-out seizure activity. You'll need to document these episodes with the school's help and talk to a pediatrician neurologist to truly get this sorted out.

As for his lack of motivation, that could be due to any number of factors: an undiagnosed learning disability, fine motor problems, attention problems, a mood problem, or anything else that makes the tasks he's given harder to execute and therefore more frustrating.

Until you identify the reasons for his struggles, you won't be able to help him effectively. If you can't get a neuropsychological test in the near future, I'd at least get him in to see a pediatric psychiatrist or even pediatric neurologist to start looking for some answers.

Things can get better, but not unless you know where to start.

 

[Pookybear66]

Thank you gvc and susie! It's not that I want to pretend like the problems aren't there and NOT get them fixed, it's just that right now I'm so done with this. My emotions are freaking out right now! I just want to wave the magic wand and be done with it all.

Susie-I need to call the pediatrician dr because with our ins we need a referral. Thank goodness we have good ins but paperwork is yet another PITA.

I guess I just need a change of scenery and to stop thinking about this long enough for my head to clear so I can act accordingly. Thank you all for caring.

 

[gcvmom]

My magic wand is a night out with my gal pals Or puttering in the garden... or doing nothing for a day instead of what I should be ... or ...

Sounds like you could use a break, too. Maybe your husband could cover for you one night a week and you can get out of the house and do something for yourself that will help recharge your batteries, if only to get you through the next few days!

Hang in there!

 

[bran155]

My nephew went through the exact same thing. His teacher told my sister the same thing the teacher told you, verbatim. She said he was "spacing out". He had to go into the hospital for an overnight EEG. They did find absent seizures. My nephew has Centro-Termporal spikes and Electrical Statis Epilepticus. In only occurs during slow sleep cycles. It is called Benign Rolandic Epilepsy. The doctor told my sister this will cause no damage to him in anyway and he will most likely grow out of it. He was still having trouble focusing, so he went in for another EEG with the same results. They wanted to make sure the condition did not worsen. It didn't, so he was then put on ADHD medication, Vyvanse. He is doing very well.

Good luck.

 

[Pookybear66]

Bran-Thanks for the info. I'd love to talk to your sister it would be interesting to compare notes. Does your nephew also have ADD or any other issues?

 

[bran155]

Pooky, yes he has other issues. He had very severe lead poisoning as a little guy, from that they believe he got ADHD. His lead level was 62, the norm is 10. He had several very hyper (extra hyper) years due to the lead. He had a couple of hospitalizations for chelation therapy, which drains the lead out of the bones. It took several years and lots of patience. He is now 12 and doing great. In the third grade he tried Strattera, had a bad reaction, he was very irritable and down right nasty. So my sister decided not to go with medications. Did okay in the fourth, fifth and sixth grade. This year the teachers said he is really struggling with his attention so they tried Vyvanse for ADHD and so far he is doing really well with it. No mood changes. He even notices the positive changes in himself.

My sister said she would love to communicate with you. Please PM me for her email address. You should put bran155 in the subject as she does not open mail if she doesn't know the sender.

 

[Marguerite]

I would like to stress here - nobody with any qualifications to diagnose, has yet said that this boy has absence seizures. Pooky, what you describe sounds very much like the "zoning out" method my boys used to cope with the overload of sensory input. I also used to do something similar when I was in elementary school - I remember my teacher was writing his report (but what he wrote he muttered as he wrote and it never appeared in any report sent home - so I think it was for some departmental file, they used to keep these large files back in those days). The teacher called me to his desk to ask me what is the reason for me sometimes apparently not paying attention and looking out the window instead - was I simply distracted, or was I trying to consolidate my thoughts? I said I wasn't really aware I was doing it, it wasn't a conscious act, but I did find that I could think more clearly after I had done this. I would have been just 11 when this interview happened (we spent the winter term in a 'borrowed' room at the local high school - I remember the room we were in at the time).

My point is - your son may simply be trying to cope with too much information (too much input). difficult child 1 was a classic - he would narrow down his input 'window' until he was almost blocking out everything. Only then could he think about what he had to concentrate on. He still does this. I remember, years later when difficult child 1 was studying for his final matriculation exams, he was at home in our spare room. He came out to eat something on a break and said to me, "Sometimes I narrow down the input too much and the silence in my head is so loud it's distracting."

Anxiety also greatly increased the apparent zone-out as well. And yes, it does look like absence seizures.

However, I see nothing wrong with having EEG done. It really is no big deal especially if you present it to him as an adventure, he can enjoy being studied and getting all the attention paid to the little electrical signals his brain gives off.

Be careful how you describe it to him - kids get really worried about the possibility of anything invasive, so I would explain that everybody's brain gives off tiny electrical currents. The doctors will put detectors on the outside of his head, to try to read these tiny little currents. If he's lucky, the doctor will play the sound of those currents so we can hear them; but he will be taking readings and those readings can help find out how well his brain is working, and maybe help find a way to make it work better in there is a problem somewhere. But looking at the lights and hearing any sounds could be very interesting.
He needs to know that it's not his fault if the work is difficult. And maybe this can help.

Marg

 

[Pookybear66]

Ok thanks Marge for your input. I know nobody has diagnosed him specifically yet and I know it's not an invasive procedure. However, what I am worried about is this -I have avoided detailing this earlier because I didn't think it was relevant to the other posts and also didn't want to give out too much personal info.

His rough start to life occurred before birth. I went for a routine checkup and found out his heart rate was too fast. They immediately admitted me to the hospital and tried to control his heart rate in utero by giving me drugs and shots and everything. I was in the hospital a week before they decided they had to deliver. Of course he immediately went to the NICU and they tried everything they could. He was diagnosed with SVT(simply a quirky heart). He got transferred to a level 3 NICU when he was just a few hours old.

He spent the next 3 weeks there. His heart was stopped twice-once on purpose once not. We almost lost him. My husband has reminded me that he is strong and something inside him will get through whatever is thrown at him, but its still scary.

I worry that if he has any other "conditions" that they will have to fix those with medications that may affect his heart. Alternately, he could just try to deal with those symptoms. If all he has is ADD or something I know that medications will help but there are other things I can try as well. With seizures, if he has them, I am pretty sure there is no other things to try besides medications. So that is what is bothereing me so much-either he is doomed if he does or doomed if he doesn't.

I plan to call some docs tomorrow as I said earlier and I will let you all know what happens. Thanks for the support.

 

[Marguerite]

Thank you for explaining your concerns. I know you will be doing your utmost to not let him see your fears - I know from my own mother in law's heart problems, her anxiety (even mild anxiety) triggers heart palpitations. She will worry that she MIGHT get heart palpitations and hey presto, she does! I go in for tests and she worries that I am worrying about my health (because SHE would, if it was her having tests) and off her heart goes again!

Pooky, serious suggestion - slap me down if you need to - but if you have your son being monitored by a pediatric heart specialist, someone just keeping tabs on him to ensure that everything is going smoothly and his heart is continuing to do well, then a doctor like this would be someone to talk to about not only tests, but about any possible medications/treatments for anything that might be found. When you say you plan to call some docs tomorrow, I presume that some of these are your son's previous doctors? Well done. Good thinking.

Similarly, informing yourself as completely as possible about your son's medical conditions then and now, as well as the normal function of the heart (in detail) will have you as fore-armed as possible. The human cardiovascular system is a wonderful piece of machinery, with so many wonderful fail-safes built in. I had the advantage of studying it at university and the understanding has put my mind thoroughly at rest on very many occasions.

An EEG is primarily reading the electrical energy (miniscule) that is already produced. It's not about introducing electricity anywhere. There ARE tests which do this but again, they should not have an impact on a heart condition such as you describe.

I'm wondering - what has the class teacher observed? Under what conditions does she observe what she thinks could be an absence seizure? If it's at a time when she's talking to the class, perhaps explaining a task about to be done or the intricacies of triangles, then this could also fit with 'zoning out' due to too much input. difficult child 3 tells me he can't hold his concentration for long when I begin talking to him about things.
If the teacher can give you a fairly reliable trigger for what she observes, then you could try to trigger it yourself during an EEG. So IF it's a seizure, and you can perhaps be talking to your son to help him understand about something like the United Nations and how it works, for example, or hoe people vote and why in the upcoming elections, then if he zones out and it IS a seizure then they should identify it as such. But if he zones out and it's NOT identified as a seizure, then that is really good news - no absent seizures, but something else which can probably be managed by controlling the sensory stimuli he is exposed to. That has worked for us and as the boys have grown older, they have learned to cope with more and more, including difficult child 1 multi-tasking like I never thought he would be capable of.

From what I understand of mother in law's heart problem (as much as anyone understands) it also is SVT. But because of her age and past history, it IS a bigger problem. She also worries about any medication changes and the effect it might have on her heart - which of course only makes it all worse.

I also worry about medications and reactions, in my own health situation. Sometimes there is cause; sometimes there isn't.

So don't worry, we do get it. Especially when it's your first-born, one you had to fight so hard for, and you wish if only the problem could be all laid on your shoulders and not his. If only it were so... but it's not.

Use your resources, do your homework, inform yourself, and lean on us when you need to.

Marg

 

[gayle16again]

My difficult child 1 also has Absence Seizures. However, his are cardiac related. He has weak valves in the veins in his legs and blood pools, short circuits his brain and he spaces out for a few seconds.

Vasovagal syncope is what it is called if you actually faint. He used to faint 10 times a day, scaring the beezus out of everyone. With medications (Midodrine) he "only" has the Absence Seizures, and he is growing out of them so he doesn't feel medications are necessary now. He sees a pediatrician Cardiologist at the University of Iowa Hospital. Tests were extensive, EEG, EKG, ECHO, Tilt table, lots of blood work too.

Where your difficult child already has cardiac issues, you may want to investigate this further.

Good luck!

 

[Pookybear66]

Thanks for the info gayle. Today was a much calmer day for me. I didn't however make any phone calls to docs. It seems the reason things were affecting me more yesterday than usual is that I was getting a cold. Luckily, with husband's schedule he was home today. I was able to take a long nap in the afternoon and feel ok right now. DS was also pretty good today and actually did some writing work for me. Well in fact. So I guess we all run across those pits in the cherry bowl of life sometimes.

 

[Marguerite]

I hope you feel better soon, Pooky (I read your post in Good Morning Thursday).

I tihnk I've mentioned it already - how are your son's hands? When he grips a pencil, what sort of grip does he use? Is he using a more mature pencil grip yet or does he keep going back to the full fisted grip? What are his fingertips doing as he grips with a pencil grip? Do they bend back? Because if they do, not only does this lead to hands getting tired and hurting fairly quickly, it also causes damage to his joints in general, sometimes even before teens. You CAN get ring splints, you would need to get this assessed by an Occupational Therapist first but they may be also able to help with ring splints.

difficult child 3 was using a computer keyboard from very young. So very early on, when it became clear that he had hypermobility problems, we switched him to typing instead of forcing him to keep handwriting. He does know how to hand-write, he will write single word answers, but when getting words down onto the page it is more important that he answer a question fully, than he mentally count how many letters in each word before he composes his (very brief) handwritten answer.

It's never too early to begin using a computer - we found one on a rubbish heap when difficult child 3 was a baby, so we figured if he wrecked it we still hadn't lost anything. So he had his own computer, with educational software at his level and that he was interested in, when he was about a year old. At first he was doing simple mazes and matching a letter or number on the computer screen, but soon he became much more sophisticated in terms of what he could do - he really blew us away. We videotaped him in the week after his second birthday, speed-typing in the alphabet (lower case on the screen) on the keyboard and reciting the alphabet as he went. The computer couldn't keep up. The thing is - he had previously programmed the computer himself, with the alphabet!

Look after yourself, keep yourself well. If you go down sick then everything else and everyone else loses who they rely on.

Marg

 

[laurensmyprincess]

Hi there,
My daughter has seizures (complex partial which are different than absence...but she too, zones out during her seizures). She also has ADHD. I agree with the others -- you should seek testing with a neurologist. Behavioural stuff and seizure disorders go hand in hand in many cases. I am not a doctor, but hopefully you can get this all sorted out soon, so you can figure out a treatment plan. She is on anti seizure medications, and the psychiatrist has just recently prescribed ritalin for attention. We havent tried it yet; just kind of riding this one out...she is on too much medications already.

Good luck.

 

[TerryJ2]

Pooky, you've gotten some great advise here. I can only offer support.

I did not know that absence seizures could be outgrown, Bran. Very interesting.