Absence seizures/epilepsy

[Sahamamama]

If your child has absence seizures/epilepsy, please share what you have learned about how to help that child learn (especially writing/spelling). How do you know when to push, and when to have empathy with the "moments that disappear?" How do you work with moodiness and fatigue that come from seizure activity and/or medication? Finally, how do you determine whether or not the child is "pretending" to be tired, just to get out of work? What is "lazy" with a child like this? TIA, we really could use some advice from experienced parents.

[Ottakee]

My girls with seizures are 11 and 12. They don't have classic absence seizures but rather some sort of complex-partial seizures for 12dd and migra/drop seizures for 11dd.

 

One thing that helped with the meds is to have blood levels taken regularly to make sure the dose is high enough but not too high. Both girls are on Lamictal but one takes 7 times as much as the other (only 1 inch and 5 pounds difference in size) due to different metabolism. If we gave them both the same dose it would be way too high and have too many side effects for one and not nearly enough to be effective for the other.

 

My 12dd is also on Tegretol. When we have problems, first thing I do is get a blood level the next morning. We have learned that her level needs to be 10-11 for best seizure control. As she is in puberty now we are tweaking her doses every 6-8 weeks to keep that level where it needs to be.

 

On the tiredness, if they say they are tired, I believe them but then require them to go to bed or the couch for 1/2 hour of quiet--no TV, etc. If they are really struggling, they will go willingly, if not, they will decide they aren't that tired.

 

For Spelling, we are using Apples and Pears spelling. http://www.soundfoundationsbooks.co.uk/ This is working well.

 

What age is your child with seizures?

[Sahamamama]

What age is your child with seizures?

 

Thank you for your response! I was inquiring because I've been tutoring my sister's son. He will be 11 years old tomorrow. He finished public school 5th grade this year, but is way "behind" in many areas, according to the school. In particular, he struggles with handwriting, spelling, and writing. Personally, I think that he is a bright boy who needs a lot of traditional one-on-one instruction -- explicit handwriting instruction (e.g., how to make a capital, cursive E), copywork, dictation, phonics review/reinforcement, read alouds, memory work, recitation, audio books (for listening skills), narration, spelling study, dictionary skills, grammar instruction, mechanics instruction, and so on. Whew!

 

But if he gets individual instruction in these areas, my nephew IS able to learn and achieve good results. I also agree STRONGLY with SWB that young students should NOT be given a blank piece of paper and told to write a "creative story." This happened all the time for this boy, beginning in Kindergarten! He hadn't even been taught to "make his letters," but was expected to "write a story." Baloney.

 

Call me old-fashioned, but the "old-fashioned" methods I've used with him really work! I just wonder sometimes what it's like for him to have seizures, what it's like when he blanks out and comes back and I haven't even realized he wasn't "there." I am getting better at watching him, though, and when I think he's absent, I stop and wait. It's a challenge to stick with a new and difficult concept (at least for me it is). Is teaching new material to your daughters tough for you, too? Thanks for the input.

[Heather in Savannah]

I may be off here, but I am wondering if your nephews seizure medication dosage is right. Should he be "zoning out" if his meds are correct? My dd was diagnosed with Absence Seizures when she was 12. The Pediatric Neurologist told me that if we could get the dosage right, he has had great success with adolescents outgrowing the seizures. My dd was on Zarontin for 2 yrs and has totally outgrown the seizures. I am incredibly thankful.

[Ottakee]

Sounds like it is good that he has you. He is quite young for his grade which for a boy can make things tougher--they just don't have the maturity for some things if they are the youngest in the class.

 

I would agree that the explicit instruction is very good. He likely missed important pieces along the way but now can learn them if he is given the steps in order.

 

Can you homeschool him or have his mom homeschool him for a year? A program like ACE paces might be good as they are very step by step and you can test the student to see exactly what they are missing and where they need to start.

 

How well controlled are his seizures now? If they are not controlled, they need to call the doctor. As kids go into puberty they often need frequent med adjustments as their bodies metabolize the meds differently.

[Sahamamama]

I may be off here, but I am wondering if your nephews seizure medication dosage is right. Should he be "zoning out" if his meds are correct? My dd was diagnosed with Absence Seizures when she was 12. The Pediatric Neurologist told me that if we could get the dosage right, he has had great success with adolescents outgrowing the seizures. My dd was on Zarontin for 2 yrs and has totally outgrown the seizures. I am incredibly thankful.

 

No, and that is part of the problem -- they are working on his dosage this summer, to try to have him seizure free before the new school year begins in the fall. My sister did find a new pediatric neurologist (seems to be a MUCH better doctor), who wanted to start from scratch -- she ordered all these new tests and lab work, so she could begin from the beginning. My sister had the impression that the doctor was unimpressed with Mark's previous neurologist... Hopefully, he will outgrow these seizures. We are praying!

[Sahamamama]

Sounds like it is good that he has you. He is quite young for his grade which for a boy can make things tougher--they just don't have the maturity for some things if they are the youngest in the class.

 

I would agree that the explicit instruction is very good. He likely missed important pieces along the way but now can learn them if he is given the steps in order.

 

Can you homeschool him or have his mom homeschool him for a year? A program like ACE paces might be good as they are very step by step and you can test the student to see exactly what they are missing and where they need to start.

 

How well controlled are his seizures now? If they are not controlled, they need to call the doctor. As kids go into puberty they often need frequent med adjustments as their bodies metabolize the meds differently.

 

Yes, thanks for the response. It's true that Mark is young for his grade. If you met him, you might also say that he's, um, young for his age! LOL. He is immature, and right now, he's driving my sister crazy with his 11 year old boy antics and that HIGH-pitched voice. Eeeeeyyyiiiii. I think he screams more than his 7 year old sister does. At least the 13 year old nephew is maturing, he is my sister's saving grace this summer, so far.

 

Thanks for the advice about the ACE paces. My sister has NO plans to EVER homeschool, thank you very much, she thinks that people who do this are CRAZY -- and it takes so much time, so much money, so much attention to one kid, etc., etc., etc. So that's the situation there.

 

I will keep the ACE paces advice in mind, though, because without one-on-one instruction (which he is NOT currently getting), Mark will only fall farther and farther behind. Even my mother, who is not exactly pro-homeschooling, thinks that Mark should go on being tutored and/or homeschooled, at least for a year -- to "catch him up." It's probably not going to happen, but you never know. Thanks for the advice.