Children with epilepsy

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Hi, I would like to introduce myself, my name is Brenda. My daughter, who just turned 13, has epilepsy, and also recently diagnosed with ADD/ADHD. I live alone with her and I am just having a terrible time navigating this disorder and finding qualified help for her. As many may have experienced, this disorder is treated casually by her teachers and not considered a learning dis-ability. I have taken her out of public school and have her enrolled in a public home school, to try to catch up, but she is still having great difficulty . She is on Lamictal as well as Concerta for ADD/ADHD, and I have my worries and concerns as the meds conflict with each other. If ANYONE can help with this situation, I really need to hear from you, I am at my wits ends. Brenda
 
that sounds like a lot to worry about...I hope you have a good doctor for her that can manage both conditions?

If not, that would seem to be the place to start.
 
hi Brenda! Welcome to CWE. I'm a public school teacher, and teach special ed. Feel free to ask if you have any questions. In the meantime, check out the info in the library here. Also, have you figured out what triggers your daughters seizures? If not, you might want to. For some of us, once we find out out triggers, we can either avoid them or do things to help our meds work better, and some have found that they could get off some of their meds. you'll want to check out the info on diet, vitamin supplements, and catamenial seizures. If you haven't figured out your daughters triggers (things that might increase the chances of her having a seizure) you need to have her start keeping a VERY detailed journal. Here's what it should include:
1. Food and drink (what, when , how much)
2. Sleep (how many hours, and whether it's interrupted)
3. Stress ( Any stress she's under, and what she's doing to deal with it. Teens actually get stressed out pretty easy...Oh! and any illnesses she has counts as stress.)
4. Strange feelings (odd feelings/smells/tastes/sounds/sights when and how long it lasted, as well as migraines)
5. Seizures (when, where , how long it lasted, and what she was doing prior to it.)
6. period (what day did she start, how long did it last, and how long is her cycle)

Here's why. Lack of sleep, poor diet, too much caffeine, too much stress, being ill, and having your period can all trigger seizures. Your going to look through the journal to see if you can see a pattern. Also, give a copy of it to her neuro. It will definitely help in the diagnosis and treatment.
 
Thank you all for responding, you have no idea ( or maybe you do) how difficult it is to deal with. Absolutly no one in our familiy has had or ever had epilepsy, so I am clueless as to what to even look for.Thank you for the list of "Triggers" to watch for, that will help, she is also going through the adolesant stage, and I am just barely hanging in there, but I know that she needs me, friends are so important to her, and they seem to be dwindling the more they find out about her dis orders, ( I know, I tell her they aren't real friends anyway, but that just doesn't help her , ) She is getting very lonely and I am considering putting her back in Public schools, but she just sleeps so much, I can't get her up in the morning, and I start to think that she has been seizing all night, but the diet and stress I am going to start paying special attention too,. I am going to check the library
 
Just curious...did you automatically put her on concerta when she was diagnosed with ADD/ADHD? I have some parents that choose not to medicate...and it's because they worry abuot drug interactions or side effects. Many times, they go with the old special ed. trick...which is to give the student a half a cup to a whole cup of coffee, to see if it helps. For many, it does. It helps the student to focus with fewer possible interactions and side effects. If you're going to try this, make sure that you don't let your child use sugar in the coffee. Only coffee, creamer, and splenda. (Aritifical sweeteners, like in diet sodas, can cause seizures. ) You'll also want to note whether your daughter has any food allergies. Food allergies can be a trigger too. As can the artificial preservatives, flavorings, and colorings added to food. I know...sounds like there's triggers everywhere....the best bet, for diet if you don't want to go organic, is to shop around the edges of the grocery store as much as possible. All the stuff in the aisles is pretty much chemical city. HEre's some steps you might want to take:

1. Have her eat 6 small meals a day. ( By small, I mean a meal should fit on the salad plate. this will keep her blood sugar levels stabilized. And low blood sugar can trigger seizures. It's weird but you'll find a higher rate of hypoglycemia and diabetes in people with epilepsy then in the general population. So the best thing you can do is try to switch your family to a diabetic style diet.)

2. Have her get 7-10 hours of sleep each night. (Teens need more sleep than an adult due to growing occuring while we sleep.)

3. Have her find healthy ways to deal with stress. (Exercise (battles the weight gain that happens with many seizure meds), art, writing, yoga, meditation, prayer, gardening. All of these are good possibilities.)

4. Cut out ALL caffeine. (Caffeine triggers seizures. It's a stimulant. so this will include all sodas, coffee, tea, mate, and energy drinks...)

5. Keep away from diet sodas or food....(loaded with chemicals, many of which can trigger seizures)

6. Stay away from fast food (loaded with chemicals. Plus they actually put sugar in burgers...a stimulant...the last thing we need.)

7. Quit taking OTC meds for colds and allergies. (Especially antihistamines. Antihistamines are a stimulant. And other meds like Nyquil can trigger seizures.)


I know...it sounds like there's lots of triggers...and there are....but if you can find what her triggers are, it should help. If you can't, and some people never do, then you may have to look into different meds or the addition of a med. If you choose to take her off the meds, then make sure you do it under a doctor's supervision, and that you have other treatments that your using while the weaning process takes place. My suggestions would be EEG Neurofeedback (great results for people with ADD/ADHD, and some insurances even cover it...) and vitamin supplementation (before you start this, have a COMPLETE blood workup done first.

Right now, your daughter is going through depression. Let's face it, it's hard being a teen. And then adding to that a medical condition that is brutally obvious is no picnic. You may want to consider getting her a service dog. The service dog may actually help her to make friends. After all, what kid isn't at least a little curious about service dogs. :) I think there's a service dog group in Temecula, CA that offers service dogs free of charge to people who qualify. If you're going to consider this, just remember that there are 2 different kinds of seizure dogs. One is an alert dog, they are dogs that alert the person before a seizure happens (you cannot train for this ability. Some dogs alert and some don't.) and seizure response dogs. (These are the ones that are trained to roll the person on their side, and get help, or stay with the person while they are seizing. )

Good luck!

Oh! Have you considered getting her involved in community or faith based groups for teens? Maybe at a rec center or church? That way she would have other kids that she cuold socialize with. If you haven't you might want to contact different groups in your area, and explain your daughters situation. Your daughter has to stop thinking that seizures are the end of her world. Many of us go on and get educations (and I'm talking grad degrees...), careers, and families that love us...( And no, we don't end up old maids. :) I have a wonderful husband. And yes, I have grand mals. :))
 
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Welcome..you have found the best place to learn and to talk with others who understand. I got diagnosed last year with petit mals...and really had no idea about epilepsy. This site has been a Godsend for me.
The one thing I have learned, is E seems to be a always changing thing. In just a year, I have had different triggers come up for me. And from reading posts on here, it seems the constant change may be more common with the adolescents. Even as an adult, I have lost friends (and yes, I know they weren't real friends, but it does hurt) and had family members not want to be around me since they learned about my seizures.
 
Matter of fact I pondered heavily about putting her on ADD meds, for many reasons I have always been against itThinking that to many children were put on it that didn't need it, But after much consideration and observation of my daughter, I came to the conclusion that she is different than my son, who also was a candidate for add med, but I disagreed, and I was right to do so,. She has been on the Concerta for about 3 weeks now,, she has some "Side effects" some good some bad, eg. she will start conversations in mid lessons, and ask nonstop irrelevant questions, and ask about my own childhood, repeatedly, same questions, same answers,, but some good is that she has been able to complete some lessons, as long as they are not to detailed, her teachers don't understand that is a big thing for her. I would have liked to try the coffee trick first, but she is on this now ansd I feel it is to early still to know if the Concerta is Good or Bad. We see the neurologist on the 2nd of april, and I will see from there I guess, at least you all are giving me some great info and different avenues of thought, like the OTC meds. Her Dr. told me that Benadryle, nyquil, tylenol ,, all that was o.k. to give her,, I had that funny feeling that it wasn't o.k,, so I stopped anyway, but thanks for establishing that for me as well. I do now realize that real food is much more desirable than the processed, and I am definatly going to prepare fresh food everyday and watch for artificial, I feel that could be a trigger to her. The problem with getting involved in the community is that we live in a very small rural community, and the opportunities are very limited, and it takes so much time in the day for my daughter to get a lesson done, the day is pretty much over ,, but I am going to look into that to see if I can change this. We have horses and dogs and cats, and as long as the weather is nice she likes to putt around in the yard. But I know she needs more, and I do worry about her going to college and having a family,, God knows I cry sometimes wondering if she is going to be O.K.,, aaarrrgggghhh,, thanks for listening
 
Don't apologize

for asking questions, and getting the knowledge that you need. That's what we're here for.

If you get to a point that you really just need to let loose and vent, then we do actually have a Padded Room......you can let loose in there, OK?

Skilly has lots of good points that she brought up. Journalling everything so that you can try to find a pattern to her triggers is important, too. OK, it is a pain in the arse, that's true, but it's necessary.

Good luck, take care........and don't worry, we'll be here for ya.

Meetz
:rock:
 
Welcome
I have found nutrition to be the largest contributor to my daughter regaining control and health. It is a slow road, but one that didn't happen overnight either.

Meds were not acceptable to me. We tried four and the side effects were awful. I have now learned that Rebecca's seizures are related to hypoglycemia. Which also has a connection to estrogen dominance. Most likely why her seizures happen on her cycle. Still learning, researching and teaching the medical community

You might consider nutrition and neurofeedback for seizures and ADHD
 
i always wondered if pesticides played a part in this. we have been big fruit and veggie eaters as this started when my daughter was really young, it is hard to say because I didn't know what I was seeing.I am talking with her about the responses that I am getting and things to try and she seems very open to this.... she then reminded me when she was about 4 years old how she would steal the sugar jar and hide behind a chair and eat it, I am starting to see something here,, not sure yet exactly what, But I agree with all that the diet is the first start,, As soon as I can get to shop, and she has been instructed to stay away from artificial sweetners, ( Does anyone have an idea on Splenda?), If not I will introduce her to Stevia, I think that one is safe. And as far as her cycle, she is at the age where all her friends have started but she hasn't , And I am trying to get ready for all the craziness the universe can dish out when it does happen,, We all know, when our children hurt, we hurt,, and I will be writing .. alot,,
 
No problems. :) We're here for you, and you aren't alone. Just remember that. :) Any history of diabetes in the family? If so, you might want to start checking her blood sugar levels. Might explain the craving for sugar. As for Stevia vs. Splenda. Both sweeten, but to me, Splenda tastes better. Stevia has a slightly bitter taste to me. Aspartame and the other artificial sweeteners can trigger seizures, so I stay away from them. Actually the only time I use sugar is if I'm baking...and even that, I'm trying to find other things to sub instead. Since your'e in a rural community, check with the county extension office to see if there's a 4-H club that meets. :) I was in that as a teen. Kinda like girl scouts for farm kids. Lots of working with animals, learning about health, canning foods, sewing, cooking, baking, gardening, etc....county fair time was always a blast. :) Or check to see if there's a girl scout troop through the school, or any of the churches. My 4-H troops used to meet on Saturdays...as did the Girl Scouts...as that gave us more time to learn etc...(Oh, added benefit was that 4-H was very hands on....easy to stay focused. )
 
I personally suggest when necessary use raw sugar. I don't believe the manufactured ones are healthy. Try to sweeten with fruit. Make fruit smoothies. I have cut way down on sugar usage, so when I buy sugar raw sugar comes in a small bag, and I use it for occasional muffins, or cookies. However, snacks are moving toward veggies and proteins.
Cut out all white flour products, potatoes and ripe bananas. See if that helps. There is a connection between, blood sugar, insulin, hormonal imbalance, and seizures
 
Growing up with E

To echo what some of said, I do think nutrition and lifestyle help manage the episodes. I am a HUGE FAN OF THIS. (ie cant say enough)I can say that while I had some pretty embarrassing moments growing up, most of my friends were understanding and one BIG plus is i have been very proactive with my health (no drugs, eat healthy, very little alcohol intake, good sleep and exercise habits). No at 40 I am A LOT healthier than my friends. In fact I would say this is a BIG plus of having E (if there is one). There is also something to be said for the endorphins (my doc was a big proponent of diet and helping moods)exercise releases, sports and working out have been a HUGE help. If I ever fall off the sports (when i was young) or workout wagon my mood swings and the meds side effects get much worse.

BTW< I was also diagnosed with Dislecsia when I was also diagnosed with E but that was a common misdiagnosis then. I was forced into separate classes with reading and comprehension therapists Two years later I was told i didnt have it and it was the E. I would seek 2nd opinions and consult your child's neuro (if you already haven't).

If you stay on top of it and pay attention to how the meds side effects your child's moods then I think you and your child will be fine in the long run. My folks had to deal with my adverse reactions to pheno and dilantin and didn't really understand everything I was going through (but much has changed with E medicine since then) and it wasn't until I was an adult (20's)that I was able to address the depression and mood swings issues.

i hope these ramblings help :)
 
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