New Here, DD with Seizures

[Stephsmom98]

Hello everyone. I am glad to have found this site. We are struggling and I could use some help and encouragement. I have a 10 year old DD who was diagnosed with epilepsy at age 5. We decided to homeschool even before she was in school. It worked out because she started having seizures when kindergarten age and she would have missed the beginning. She was under control with Neuronton and Trileptal. After two years, her EEG seemed clear so they started weaning her completely off Neuronton and that happened. Then as she was being weined off Trileptal, seizures returned at night and a few day time ones. Since her EEGs were still clear, the neurologist said she was having psuedo seizures that looked like actual seizures, but they weren't epileptal because EEG didn't show electrical brain wave problems. They kept getting worse until she ended up in the hospital twice with constant seizure activity.

After all that, she was sent to Children's Hospital of Philadelphia to do an overnight EEG which showed Epilepsy. We are upset that it took so long to get them under control. They put her on Lamictal and we are starting slow because of side effects. They are getting a little better, but are still there. She cries and gets upset when she gets them and no one gets any sleep. They distrupt her sleep. She only gets this kind at night. They are complex/partial but they start deep in the left part of the brain and go back and forth between the hemispheres.

With seizures and no sleep, she has much difficulty with school. Concentration is poor, she also has ADHD, she forgets what she learns and even forgets simple things and neat things she has done in the past. We are worried about her memory loss and learning issues. She also has behavioral problems. She is very impulsive, gets angry when challenged, challenges us and all adults that are trying to help her, she has Asperger's and OCD. We aren't sure how to help her. They say it is mostly because she can't sleep well, but we are all struggling with her behavior. She gets into trouble a lot and she was never like this before. Despite all this, she is a sweet kid. You can tell she wants to please, but can't really emphathize with you. That is probably another issue. Despite what all the doctors say, no one can clearly take direction here and help us and tell us what to do about the no sleep. I guess we just have to wait to see how Lamictal works for her. We tried other medications for the other issues, but they don't seem to work as she has a sensitive stomach and she gets sick on most things

Any advice or encouragement would be greatly appreciated. Sorry this is so long. And, those with children or teenagers with epilepsy, does it affect your/their schoolwork? What do you do about it?

Thanks so much.

Stephsmom

[skillefer]

Hi Stephsmom. Welcome to CWE. Wow! It sounds like you've got a lot on your plate. Well, this is a good place to come for support and information. So feel free to vent in the padded room, ask questions, or just chime in. I hope that the meds work for you. As for the ADHD, I'm a special ed. teacher, and what I used to suggest to parents that didn't want to medicate was to give their kids a cup of coffee...no sugar...if needed use cream and stevia. The caffeine sometimes helps kids with ADHD calm down. Also, watch her sugar consumption. My hubby has ADHD and a can of coca cola makes him fall asleep. *shrug* Go figure.....

As for the OCD and asperger's...lots of patience.

[Bernard]

Hi Stephsmom98, welcome to the forum.

I'd highly recommend looking into EEG neurofeedback (see link below). It may help both with the ADHD, memory/concentration in school and seizures.

[Meetz1064]

as the Mom (& aunt) of an Asperger's kid, an ADHD kid, having ADHD & E myself...I might offer a little bit of advice.

First, Skilly's right on the $$ with the caffeine advice. Yeah, it sounds bizarre. But, it works like a charm for almost every ADHD kid I know...and for me, too.

You speak of Steph having a lack of empathy. Both my son & nephew, as well as every Asperger kid that I have ever worked with in the resource rooms in the schools over the years have all lacked empathy. In some ways, it IS upsetting. Don't get me wrong. But, it happens. And, every Asperger's kid I've ever worked with, including my son and nephew have been OCD in some way or another.

Regarding the sleep......the caffeine will help, that's true. Another idea, though, and it's just an idea. Melatonin. Once she get's tired from the caffeine, give her some melatonin.....it will help her to get to the restful sleep stage. It is actually a hormone that EVERYONE makes in their body....some of us make it regularly and well, some of us (like me)....well, we don't. Without melatonin, our bodies don't make it to the deep restful sleep that we need to repair ourselves. Talk to your doctors about it first, though.

And as Skilly said........PATIENCE is key. But something else, too that I found was really important. A SUPPORT SYSTEM. Making sure that you have a support system, so that when YOU need to take a break (and I GUARANTEE that you will need to at some point in time if you haven't already) then, you can.

I wish you luck. Parents of E children have my UTMOST RESPECT. I cannot IMAGINE having to watch that happen to a child of mine.....

Take care,

Meetz


PS........WELCOME TO CWE, BTW. This is a really cool place to be. Don't forget to check out all the nooks and crannies in this AWESOME house that Mr B built for us!

[RobinN]

Hi Stephsmom - Welcome to CWE

I have a child with a seizure disorder, and another child with Aspergers.
There is a lot of bio-med threatments available for both. Nutrition is one way to begin with both.

My daughter is being helped by neurofeedback.

[alivenwell]

I am also on Lamictal. I have very few side effects from it. Does DD take her medication right before bedtime? With that chaos, is her schedule regular every day including weekends?

Also, I can honestly say Lamictal (non-chewable) tastes kind of awful. Does she really swallow it? Or, is she like my one dog who used to spit out his medication behind the couch?

My son used to also spit his medication into the school fountain. He hated its side effects and flavor.

Is she taking the exact same dosage for a while?

It sounds like she's scared when she has a seizure. My seizures left me with extreme pain for hours because of muscle spasms during the seizure. Can she take some children's aspirin for pain to see if that helps?

And, is she taking brand or generic? That can make a huge difference.

[drarvindr]

Dear Stephsmom,
I was diagnosed when i was 13 so i was a teenager with epilepsy. My academics didn't suffer and i cleared med school a year back. But to be honest i don't have any history of OCD ADHD or Asperger's so i can't say that there is no effect on academic performance to a certainty. It also depends on the type of epilepsy and this varies widely. Ensure that she takes her meds on time every day. watch her swallow it. ( There is no shame in this. my mom did it untill i was 16. i hate taking a pill every day). Most meds work better and taste less awful if you eat before you take them.
Don't forget that a clear EEG is no indication of absence of disease. Do you still homeschool or has she been put in a regular schol recently? You said she has asperger's . There usually is something she enjoys above all else , that gives her pleasure. try to find that activity and increase it. reward good behavior with more of that activity. I strongly suggest the padded room forum to vent out. It can't be easy and angry feelings toward your child are natural. You need a place to lash out without being judged - Ta DA ! padded room. You'll feel better. Part of taking good care of your daughter is taking good care of yourself. Take care . Hope DD gets well soon.

[drarvindr]

Also you may want to take a look at neurofeedback. Bernard's got a link somewhere on it. I looked it up on medscape and it looks promising for ADHD. If it works for epilepsy ( couldn't find a journal article but bernard says it worked on someone he knows) you may be able to kill 2 birds with one stone!

[Bernard]

Also you may want to take a look at neurofeedback. Bernard's got a link somewhere on it. I looked it up on medscape and it looks promising for ADHD. If it works for epilepsy ( couldn't find a journal article but bernard says it worked on someone he knows) you may be able to kill 2 birds with one stone!

EEG neurofeedback overview

AAPB on neurofeedback for epilepsy/seizure disorders

AAPB on neurofeedback for ADD/ADHD

Carolyn Yucha and Christopher Gilbert's 2004 book Evidence Based Practice in Biofeedback & Neurofeedback (.PDF - see pages 10-12 and 18-19)

ISNR neurofeedback article archive (several articles on neurofeeback for ADD/ADHD)

EEG Info's index of neurofeedback studies for epilepsy

EEG Info's index of neurofeedback studies for ADD/ADHD

HTH!

[Loudmouth]

Hi! My 10 yr old daughter has been diagnosed with Epilepsy ( 3 months or so ago) and ASD (at 4 yrs old). She also has memory problems etc, and learning difficulties. She has also just been diagnosed with dyspraxia and discalculia (dyslexia with numbers). She is taking Lamotrigine (lamactil) also. She gets very frustrated with herself, and expects everything to always run smoothly, and gets upset when it doesn't. Her sleep has been interupted for years due to all her problems, makes her quite short-tempered. You might like to try cutting out aspartame from her diet, I've found it's really helped my daughter( I did that before she was put on medication). (((((HUGS)))) to your daughter, from one mum of a 10 yr old girl with E to another!