Homeschooling with seizures

[happycc]

We just found out that my 3yrs old son and 14yrs old daughter has seizures. My husband of 8yrs just enlightened me that his sister has seizures and shes 48 yrs a mess with seizures. We don;t have any connection with his family so I was in the dark about all that.

 

Anyways my 14yrs old is diagnosed with Juvenile Myoclonic Epilepsy and she also had an MRI showing left mesial temporal lobe volume reduction and left mesial temporal lope sclerosis. She has had two falling bouts and as of the last couple of months extreme forgetfulness ie memory problems and not always understanding what she is saying. 

Unable to focus. Takes a long time to get anything done: school work and chores

Wandered around the house a lot. Stepped in front of a car. She says she has deja vu events several times a week. Feels tingling and numbness on her face, stomachache sometimes. I just see her staring out into space or at the computer screen with no work being done. I knew something was wrong when I knew she was my most conscientious child and she was just messing up and I was getting frustrated and had to take a step back and really thing is this her or not and that puberty can't be impacting her this badly. I got more ammo to have her tested after getting my younger son;s seizure risk test positive and family history infor from my husband who forgot to tell me the last 8yrs. Maybe he has seizures. 

 

She is now on Keppra and decided to medicate as she is close to driving age and is more independent now and needs to focus well on school work preparing for high school work next year. She takes the Keppra with B6 too to deal with Keppra Rage

 

My three yrs old has complex partial seizures.

He was prescribed Keppra but decided not start as we don't see anything that would disrupt much. 

He is under our constant watchful eye.

He has been prescribed diastat emergency rectal meds. 

 

Now we are in the process of testing all the kids. Her twin has 80-90% chance of having the same as well as her 12yrs old sister I think has 75% chance. I have seen symptoms in her 12 yrs old sister who has overall spaciness and just seem not of this world. Lots of staring into nothing land. Not a whole lot with her twin but increased spaciness compared to before puberty started.   

 

 

 Anyone else homeschool kids with seizures and how do you deal with their memory issues?

[geodob]

Hi Happycc,

You wrote that the MRI showed 'left mesial temporal lobe sclerosis'.

Where the left mesial temporal lobe, is actually made up of a combinations of different brain regions. Each with different functions, that work in coordination.

The Sclerosis, is actually 'scarring'.

Though I would suggest that it would be helpful for you, to learn about the different regions in the left mesial temporal lobe, and what each of them do?

So that you can have a clearer understanding of her 'difficulties'.

How they contribute to 'memory issues' ?

 

Though seizures will cause further sclerosis/ scarring, so it is important to try and prevent further seizures.

But one thing that I would pick up on , is where you wrote: " I just see her staring out into space or at the computer screen with no work being done."

This is important, as people vulnerable to seizures, can have them brought on by computer screens, and electronic screens.

With computer screens, they have something called a 'refresh rate'.  Where the image on a screen, is refreshed/ replaced, so many times each second.

When a screen is set at low refresh rate, then it can induce seizures.

As well, a high setting for 'brightness', can also induce seizures.

 

So given that she will no doubt be using computers, I would suggest that she learn how to simply check and adjust the settings.  So that she can prevent them from causing any seizures.

Also TV screens can be a problem?

As well as flourescent lights, which flicker and when faulty can induce seizures.

 

Though a homeschooling  situation, provides an opportunity for her to understand what triggers her seizures, and identify ways that could prevent them occurring?

[LMV]

Our STBADD7 has a seizure disorder. Right now she is doing quite well. We aren't seeing breakthrough seizures unless she gets sick so we haven't made too many adjustments. We're a pretty low screen time family in general and we've always put a lot of priority on adequate sleep and consistent sleep/wake times so we didn't have much to adapt there after her diagnosis.

 

If screens seem to be a seizure trigger for your daughter (and they can be) can you take advantage of homeschooling and really reduce the screen time? Obviously you may need to adapt this as she gets closer to college but this might really help for a few years now.

[AngelaVA]

My daughter has epilepsy. The main way we have dealt with memory issues is to work towards better long term seizure control. It sounds like both your kids are still having seizures. The partial seizures with the "just staring" may not seem like much to you but it's erasing their memory of a portion of their day and long term that causes cognitive damage. The modern treatment goal for epilepsy is "no seizures no side effects" which can be obtained for at least 75% of people. It sounds like you need to see a pediatric epileptologist to help guide you in treatment. If you check out the epilepsy foundations web site you should be able to find a level 4 epilepsy center near you. With such a strong family history of epilepsy you should definitely have a genetic epilepsy panel done. If there is a known syndrome present it will help guide you towards the most effective treatment.

 

 

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Edited April 1, 2016 by AngelaVA

[happycc]

Hi there: 

thanks  for your replies. We are working on things. My 3.5 yrs old son just had a video eeg and he continues to have posterior epileptic discharges but no seizures were detected during the 24 hours. 

My daughter got switched to Topamax and we started noticing speech and language issues and still has breakthrough seizures. So the doctor wanted to start her on lamictal but she developed a rash. Now I am not sure what to do. 

 

The seizures do not always happen during screen time. Early in the morning and while doing laundry (her chores). 

Mostly occur in the morning with her twitching so bad she spilled 200pills of topamax all over the place one morning. 

 

I am have not noticed what triggers it. 

Edited June 16, 2016 by happycc

[geodob]

Hi Happycc,

 

You wrote that the seizures and twitching mostly occur in the morning?

Where I wonder if you've heard of the 'Ketogenic Diet', which has been recognized to help 4 out 10 children, reduce seizures. 

Which is a strict diet, and difficult to follow.

What it basically involves, is replacing carbohydrates in the diet, with 'fats/ oils' ?
Here's a quote from an article on it:

 

"How does the diet work?

Usually the body uses glucose (a form of sugar) from carbohydrates (found in foods like sugar, bread or pasta) for its energy source. Chemicals called ketones are made when the body uses fat for energy (this is called ‘ketosis’). The body uses ketones instead of glucose for its energy source. Research in 2015 has shown that another chemical, decanoic acid, is also produced as a result of the diet. These chemicals help to reduce seizures for some people."

 

Though as you noted that they mostly occur in the morning? 

This made me wonder what she might usually have for breakfast?    As typically breakfasts are very high in carbohydrates. 

Much higher in carbohydrates, than other meals.

 

So that what I'm thinking of, is that perhaps she could try having Ketogenic breakfasts for a week, and observe whether it makes any difference?

While the Ketogenic diet is difficult to use for all meals.

Given that her seizures and twitches mostly occur in the morning?

Maybe just having it breakfast would be enough?

[Kat w]

We have the boys on intuniv currently for seizures. Both boys were the staring off...nobody's home type of look erasing memory bouts. Intuniv has and is invaluable to us .

Diet. We cut out sugar also in the form of carbs. This has helped.

Also? Lots and lots and lots of repetition. I mean...lots. I feel sorry for them on how much repetition we do. Very labor intensive but works.

Some days doesn't seem to then one day...like yesterday ..DS 12 spat out something he learned 2 yrs ago. He looked at me w shock and said...I can't believe I remember that. I said , see what your medicine and dies and practice has done? He was VERY pleased and encouraged. It's not easy but very worth it.

And what one DC responds to doesn't mean your other DC with do well with.

[Noreen Claire]

With episodes happening mostly in the mornings, I would guess that her nighttime dosage would need to be upped to make it last longer into the mornings, until her morning dosage kicks in. My son (now 20, diagnosed at about 12)  takes a higher dosage in the mornings because he mainly had episodes later in the afternoon/evening hours.

 

Switching back/forth between medicines quickly, without weaning (slowly) off of one while starting (slowly) a new one is a recipe for disaster - I would find a specialist at a major children's hospital or neurological center. We spent several years trying to get the dosages right, and every time we thought we had it he would have a growth spurt and we would have to start all over. He's on Keppra and Depakote and at 20 was finally able to start driving lessons, after having gone 12 months+ w/o a seizure. He has had both partial complex and tonic-clonic (grand-mal) seiures.

 

Good luck to you and your family in getting this under control.

[Kat w]

I just saw that you particularly asked about memory issues.

 

Aside from the intuniv , I started a diary or log and tracked his day and nifht basically. Helped me figure out the triggers and it's pretty much, all stress, florescent lights, high sugar/carbs.

 

But to the mmory issue. We rinse n repeat lol. We do lots and lots of repetition. Even of things learned last year BC they simply forget. Our school days are long and I notice you have 7 children ( love big families! ) :)

But, it's been the only way for us. They still don't know a si gle math fact past 1+1 but we have othw issues too. HFA being one of them. But the end result is the same when dealing with memory problems .

Try to keep a log and track triggers then avoid when possible ( let's face it, not always possible lol) and try to find the right med or combo of meds.

 

Repittion really.

I wish I could give you a magic bullet and make it go away or solve the problem .

Thats all I know to do and I've asked all the professionals we've dealt with ,pretty much that's what they've said.

Good luck and big hugs. :)

[AmyontheFarm]

We've just recently started using essential oils and I was surprised to learn that for some people specific oils could cause seizures.  With people trying to be organic more often, etc.  Take a look to see what products the kids are exposed to and maybe explore if something they are using has become a trigger.

[savmom]

My dd14 with epilepsy has a similar seizure type & pattern. She also has higher seizure activity in the mornings and when she first falls asleep. About 6 years ago, I started giving her 75% of her medication at bedtime and it all but eliminated her seizures! Now they only happen if she is extremely stressed, overtired, or sick. Not giving medical advice, just an observation ;)

 

The keto diet was a bust for her, did not help at all. I really wanted it to but well, what can you do :P

 

Definitely start a seizure journal...if you haven't already ;)

 

As for school work, we take lots of breaks, repeat lessons 10 times if we have to, and try to do as little as possible on the computer as that seems to exacerbate the absence seizures (petit mal).

[AngelaVA]

When we had our neuropsych exam one of the recommendations for memory issues was to study things in thematic units that integrated different subject areas. It has been helpful for us.

 

 

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[passionate for truth]

I began homeschooling my daughter when she reached second grade.  She was vaccine injured with her kindergarten shots, and began having absence seizures immediately (they progressed into grand mals when she hit puberty).  She was enrolled in private school at the time, so the teacher, being a good friend of mine, would keep a journal of seizure activity for me.  By first grade, the journal became harder for the teachers, and we realized that homeschooling would be our best option to work with the challenges of the seizures.

I am going back quite a few years with this, as my daughter is now 21 and taking college courses, living full time with us in Costa Rica while we run our ministry ... all that to say that homeschooling her (and later on my son as well, just because homeschooling is awesome!), was the best decision that we made.  

My biggest advice to anyone homeschooling a child suffering from seizure disorders is to be patient and flexible.  Make sure they are getting the rest that they need, even if it's inconvenient to your schedule, and to let you know that their diet is cruicial!!!  

After many, many hours, days, years of research, we realized that gluten, grain and dairy were all contributing to seizure activity.  We changed her diet gradually, and saw great improvement with her memory, clarity of thought, energy and seizure activity with each change that we made .... she is now 95% seizure free!

Go slow with them if you need to, work around their abilities, gifts and talents, and don't be hard on yourself or on them - we are a testament to the endless possibilities and treating her at home with us was the best family move ever!!!!  Blessings to you - 

[happycc]

Hi everyone update on homeschooling with seizures:

 

 

Child A: 15 yrs is doing better once we decreased her topamax. When she was on a higher range of the drug she started to fail her hearing test in one ear. It was ototoxic. We have seen too much but just maybe general spaciness and not being able to follow a conversation. Pauses and starts. No more big falls and major twitching. She went to Washington DC this Spring as a teen representative of Northern California's Epilepsy Foundation Teens Speak Up program. It was all expenses paid and both her and her dad went as I hate flying and I've been to Washington DC before. You can find her blurb about herself and more information by going on the the website. They had lots of workshops about epilepsy, advocacy and lobbying and she got to meet legislators and congressmen to politely ask for money and why by telling them her testimony. If you know of any teens with epilepsy that is relatively under control (as the trip can be grueling-she had a seizure on it due to being very tired) please please consider the Teens Speak Up program. She has volunteered in their office for the year as well as gone to their summer camps and participated in their teen art therapy program. It truly is a great program. She just had her annual eeg and the meds look like they are working and she may be able to get her driver's license in a year or so. Her first year in high school has been great. She has done well despite having her seizures. As long as she gets enough sleep she is fine. 

 

Child B: 4yrs. Still has brief infrequent seizures, not medicated except for rectal diastat should he ever go into status. He struggles with Apraxia and Autism. Working improving intelligibility and interest in speaking.  

Edited May 5, 2017 by happycc