Son just diagnosed with Absence Seizures

[nanlev1818]

He is 16 and was just put on Lamictal (lamotrigine) this week. I am nervous of all the side effects and the possible rash but I am hopeful he can tolerate it because his seizures have interfered with learning. Everyone thought this was all ADD since his seizures are only 3-6 seconds. He isn't aware of all the seizures either as we learned from the VEEG. My son had just gotten his driver's permit so we are very lucky that he had an unusual seizure where he was talking and my husband saw him or else we would have missed it and he could have been driving. I think my son has had this for some time and he has had a lot of difficulty with reading and remembering thing...I am hoping once the seizures stop, that he will find learning a lot easier.

 

[epileric]

Welcome nanlev1818

I can only imagine how you & your son feel. I"ve had epilepsy all my life so it's very much just a part of me. I don't think I"d handle it so well if I found out when I was a teen. I also have trouble learning, or even passing courses that I know inside out. Nobody really knows if it's the seizures or the medications that is causing this (or what the problem even is for that matter).

As far as the side-effects of the medications are concerned, remember that everyone reacts differently to all meds. There's usually a long list of side-effects to watch for but that doesn't mean that they all (or even any) will bother your son. Watch for the side-effects since you'll be more likely to notice them than he is, especially the emotional ones. Also be aware of which is effecting your sons performance the most, the seizures of the side-effects.

You might want to check out some of the other things you can do & see if any help your son. http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

 

[nanlev1818]

Thanks for your quick response- My son has been tested over the years for learning issues and learning disabilities but we never got a conclusive diagnosis except for ADD and as for learning...well we could only point out areas of difficulties. We never had a name for any particular learning problem which was hard to deal with too. He knew he had had this for 2-3 years (I now think it was earlier) but he didn't say anything because he thought it was the ADD. He actually was a little relieved to hear that this was a real disorder that can be treated and controlled. He can wait to drive safely. He also reacted to the flashing lights in the hospital and the hyperventilation so we are aware of the video games and other lights...my only problem was that they did the lights and them immediately after, they asked him to breathe and then he reacted so I am not sure if it was the lights and the breathing or just one without the other...

We don't know anyone who has epilepsy so that's why these forums are so great. I have now spoken to other parents and we have shared the names of doctors, medications, and now I am very interested in discussing the school IEP. It also seems the more I read, the more questions I have! Thanks for your help!

 

[Nakamova]

Hi nanlev1818, welcome to CWE!

I hope you feel free to ask questions and post comments. There's a lot of cumulative experience here at CWE, and plenty of people who can empathize and help. I hope the Lamictal does the trick for your son. The tapering on process is slow, so you and he will need to be patient. I'm on Lamictal as are many others here, so we're ready to offer advice and comments as needed.

Best,
Nakamova

 

[epileric]

my only problem was that they did the lights and them immediately after, they asked him to breathe and then he reacted so I am not sure if it was the lights and the breathing or just one without the other...

I can't provoke a seizure by hyperventilating or by watching a strobe light but when going for the EEG's the technicians know how to use those things in combination to provoke a seizure as needed during testing.

With me it's never just the light, the breathing, the stress, the eating schedule, the excitement the lack of sleep etc. It's always a combination of things so I just try to take the best care of myself in as many ways as I can. It would be so easy if it was just one thing that triggered my seizures. Generally I'm not sensitive to the flashing lights (photosensitive) but when I"m overtired & haven't eaten well the computer sometimes provokes seizures.

 

[nanlev1818]

Thank you. He is only on 12.5 mg. so this Thurs. he goes to 25 mg. and he feels fine. It is so low but I am told that's the best way with this.

I was wondering about his "spike activity" and what does that do in terms of learning? Does it interfere like a seizure does with thoughts and attention? Does the medication work to calm that down too?

I was told that his epilepsy is "general epilepsy" meaning the whole brain is involved as opposed to a part of the brain...and that he may one day have a tonic/clonic seizure potentially- so that is nerve wracking. I think that is why the doctor wanted the medication to begin quickly. Also, because it takes a while to titrate in and to see if you can handle it and to see if it works...One day at a time!

 

[Nakamova]

The spike activity -- by that I assume you mean what showed up on the EEG -- just indicates the presence of abnormal brainwaves and a correspondingly lowered seizure threshold. The spikes can be present all the time for anyone with a seizure disorder, whether the individual is having a seizure or not. Their appearance isn't necessarily tied to any particular malfunctioning in your son's conscious brain, but there could definitely be a connection to his ADD. Absence seizures and some simple partial seizures are often misdiagnosed as ADD because they involve repeated "zoning out". If the abnormal brainwaves are at the root of his ADD-like symptoms than the meds should help.

FYI-- In the first few weeks on Lamictal there can sometimes be a "perky" period when the med has a stimulant effect. Don't be alarmed if you and your son notice this -- it is transitory and usually wanes once the body has adapted to a stable level of meds.

 

[wanderlust]

hello nanlev1818, and welcome! these forums are an excellent place to come to for support. i joined a month ago, not long after i was diagnosed with epilepsy and they have been a great help to me, i hope they can be a great help to you as well

 

[nanlev1818]

Hi Wanderlust! Love the name! I have also joined a bunch of facebook groups- and have reached out to all my friends and have connected to some other Moms which was great. Talking to people like you, who have epilepsy helps so much! It is a metamorphosis from seeing the "seizure" and not knowing what it was, to getting a doctor, to the weekend VEEG, to the diagnosis, to the 2nd opinion, to getting comfortable enough to decide to go with a particular medication, to the school, the nurse, telling friends and family...you know all this...at first I could hardly say Epilepsy. I was in shock every time I said it and now, it's okay.

Do you have an IEP in school with accommodations and/or modifications? If so, can you share what some of them are? Thanks again for responding. ♥

 

[skillefer]

Hello! I'm a special ed. teacher. so if you have any IEP specific questions, feel free to toss them my way. You're going to find that there is a lot of great info here. And feel free to have your son come to the site too. There are teens here.

 

[nanlev1818]

Hi Skillifer! So much to say about his IEP-

He was 14 when they tested him and classified him going into 9th grade and we thought it was all ADD and inattention with some difficulties noted in processing time...sequencing information...he has a hard time summarizing a story or a movie for that matter and visual-auditory learning was low...as well as decision making speed and he has recall issues. He has trouble remembering what he's reading while he is reading it too. His classification is "other health impaired" for the ADD/ADHD and is isn't taking any medication for the ADD.

He has extra time in school if he feels he needs it for assessments - up to 50%, a preferential seat in the class which means near a teacher, in class support which is for Language Arts/English and for History (but he tells me they take notes during the period), he has "access" to class notes- I want to change this to where is given the notes, he can use a computer to take notes (and he does), use of calculator, study skills instead of study hall, discretely prompt student when distracted, provide study guides for assessments, word bank, long term assignments can be "chunked"

If you can think of any other accommodations or modifications that may be helpful, please let me know! Of course I have met the nurse and she is aware of his medication thus far. He was excused from all his midterms but he wanted to take 2 in the classes where is doing poorly. He had to do a presentation to the class in Spanish- he is now going to be allowed - 1 word English note card prompts- I had to fight for that one- the teacher wanted pictures instead of words for some reason and it just was stressing my son and it wasn't serving to prompt him - she thought we were "taking advantage of her" according to my son's case worker who slipped and said that the other day! My son wanted to do 1:1 presentation to the teacher instead of in front of the class and they said OK BUT there was a misunderstanding of the date and then the teacher suggested he just not take it at all! His grade is an 80 so my husband and I felt we shouldn't push since it is a subjective grade anyway. I am going to ask that he do oral presentations 1:1 since he could have a seizure and he finds it stressful in any venue. He also was photosensitive during the EEG so I don't know if I need to tell the school anything about that or not. All feedback is welcome!

Just so you know the history, I moved to this district when my son was in preschool and he was classified. My district de-classified him saying all our therapies paid off going into Kindergarten. I have had him privately tested and school tested over the years and only succeeded in having him classified going into 9th grade. It is not easy here. Thanks!!

 

[wanderlust]

Finding out about epilepsy and learning how to adjust to it is definitely a long and at times, difficult, process nanlev1818, and I can relate to that! after my first seizure, epilepsy seemed like the worst thing in the world to me, but since my diagnosis, i've learned that it's not the end of the world. i have had to make a few adjustments with my life, and although they weren't easy at first (and still aren't always easy now), they're done in the best interest of my health and that makes it easier to accept.

my diagnosis/starting on meds came at the end of my academic year last year so i haven't told my university about it.. so skillefer would be more of a help than me in regards to IEP.

 

[skillefer]

Hi nan! Sounds like an interesting case....he declassified in kindergarten and reclassified going into 9th...a very unusual thing. By any chance, did he also start having issues at this time? If so, your sons seizures might have been triggered by hormone fluctuations (think puberty). If you think this might be the case, you can request that his hormone levels be tested. If it proves to be the case, then, your doc might also add hormone supplements to his treatment plan. This might help reduce the number of seizures. I know you have a son, but believe it or not, men go through hormone shifts too. One of the mods here has a teenage daughter who has pretty much managed to get control over her seizures with a combo of diet and hormone therapy. so definitely look into it. As for the accomodations you noted, they're good. Actually, they are more extensive then what I normally use for my SDC students. so I'm going to assume your child is resource. The difficulties summarizing and such do not surprise me. Stop and think about it...reading takes sustained attention. If you were reading and having absence seizures, you would start reading a passage, and if you had several small absence seizures it might be like watching a movie and someone jumping to different scenes every time you blinked. Frustrating, to say the least.
Normally, for my students with ADD/ADHD who arent' medicated and who are having issues, I suggest 1 cup of coffee with cream and artificial sweetner (or stevia). The caffeine helps to slow their brains down so that they can keep sustained attention. This sometimes works with people with seizures too. So if you want, try it. Just remember, no sugar. You want to try to cut that out of his diet as much as possible.

 

[nanlev1818]

Hi Skillifer, the doctors did some blood work and all was well. I think he has had this a long time, although the doctors didn't think he would outgrow it. He is not in resource room and is in College prep A which is not honors classes but it is not college prep B either. I am hoping that if he is seizure free, the reading and following a story line will be easier.