Hi - not sure if this is the right place for this...

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Sweet Pea Twins's picture
Joined: 09/08/09
Posts: 922
Hi - not sure if this is the right place for this...

I posted on the Anything Board looking for parents that have a child with Epilepsy. They sent me here. But in looking at the posts, I feel like my epileptic 7 year old has nothing on the major issues that you are all dealing with at the moment...

I was just hoping to find some moms who could relate to what I'm dealing with, and maybe offer some advice as to things that have worked with their child.

Here is my post from the Anything Board:
My 7-yr old DD has epilepsy. In the past, I have never felt the need to share or request support or join the epilepsy foundation or anything... but lately things have gotten a little tough to deal with. Her Epilepsy is mild - her seizures are mild, and mainly show only in her face (her left side goes slack and her mouth and tongue pull and tick, as well as her cheek, etc.), but they scare her and she hates it. We have basically been able to control them with meds over the last few years, but lately it's getting harder, and she's now on such high doses of meds that she's having dizzy spells and actually fell asleep in school last week one day after we had increased her dose yet again!

Anyway, I couldn't find a support board for children with epilepsy here on PO, so I thought I would just ask here and see if there is anyone here who could share their story. I guess I just need to meet a few other moms who have or are going through this and can understand my feelings and frustrations with the whole thing... I feel so guilty as her mom that I can't just make it go away. She has dealt with it so well, and understands everything about what's going on... and I just wish that she didn't have to, you know?? I just feel so... helpless and sad about the whole thing, I guess.

And I'm thinking that being pregnant and dealing with the extra hormones isn't helping...

So anyway, I hope I'm not intruding...

gardenbug's picture
Joined: 03/12/07
Posts: 2025

I would talk with people at an epilepsy foundation as well as re-opening talks with her doctors, maybe even getting second opinions. Perhaps meeting other young children with similar problems might help your daughter deal with epilepsy a little better. Certainly knowing that you are not alone can be a big help.

I had a professor in university who was epileptic but was able to completely control his situation through diet. That was years ago, so maybe there are new solutions out there that might help your daughter.
I hope you make progress on this!!!

Joined: 12/01/05
Posts: 1000

That's tough. I have a couple of clients who have seizure disorders, and they tell me that every time they have to go up on the medication, the child has behavior problems, but they seem to resolve after a couple of weeks. I wonder if what you are experiencing is related to med increases and if things will improve once she gets used to the dosage.

Do you have a local children's hospital? Perhaps they have an epilepsy support group for parents and/or children. There's nothing wrong with asking for help, or even just joining a support group so that you have other people you can relate to. Sometimes talking to families who have BTDT helps a lot. I wish I knew a family of a child with dystonia, but it is such a rare disorder that there are no support groups.

Just out of curiosity, has her neurologist talked at all about a vagal nerve stimulator? I understand they can help when kids are on really high doses of anti-seizure medication. My son has a deep brain stimulator for his dystonia.

We are certainly happy to have you here and will offer any support we can, even if we don't have kids with epilepsy. Dealing with a special needs kid is rewarding, but it is also very challenging and stressful. You need a place to unwind, vent, talk, and this is a good place to do it.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Most people on this forum are dealing with different issues, but the feelings of periodic helplessness are common to everyone. It's sometimes a slow board, but the support is great.

I'm here because my step-son (almost 13) had a bunch of heart defects. In November he had open heart surgery and they replaced 2 valves and his ascending aorta. With any luck, he will never have to have surgery again and should be "cured"! So, as much as you may feel that your daughter's epilepsy is minor compared to some of the stuff we are dealing with here, I would say that the stuff that we were dealing with is (hopefully) in the past.

To have a daughter concerned about her issues and trying to help her is a great thing. I definitely support trying to find a local group for both of you to share. We have the local Children's heart foundation and it's great to remind us that heart defects (like epilepsy) come in all ranges of severity. Although we don't see other people frequently, we occasionally go to a fund-raiser of a Christmas party. It's nice to have the connection and help network "in case". On the other hand, I also think that it's important to keep it in perspective that your daughter is part of society and can't consider herself "different and needing special treatment". That is the balance you need to figure out, the balance that is best for your daughter and family.

Welcome!

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

I'm really glad you posted over here. This is a space for everyone who has any medical issues with their kiddo. We may not go through the same thing but we all know that "helpless" feeling when watching our children struggle.

I have 2 special kiddos. My almost 7 yo is high functioning autistic. And my 5 1/2 yo Eli was born with Shone's syndrome (congenital heart disease). Eli has has subclavian steal syndrome and some neurological issues.

Welcome to the board.

BTW - I do remember some friends whose kiddos went up on the meds had that problem too. When is spring break? Is there anyway to take her out for a couple of days to give her a chance to adjust?

ClairesMommy's picture
Joined: 08/15/06
Posts: 2299

You'll get lots of support here. Maybe there isn't other epileptic kiddos of moms who post here, but hey - lots of us also have kids with issues that aren't all that common or that nobody else on this board has dealt with. But, we all know about doctors, meds, surgeries, grief, stress etc. etc. etc. That's a pretty common thread amongst all of us, so don't feel like you're intruding.

My DD has vesicoureteral reflux cause by urinary defects. It wasn't until I came here that I met a few ladies who either had it themselves or have LOs going through it.

Sweet Pea Twins's picture
Joined: 09/08/09
Posts: 922

Thanks, ladies, for all of the support. It just seems weird to me that I can't seem to find a lot of moms on these boards with a child with epilepsy. I thought it was more common than I seem to be noticing!

It is scary having a kid with Epilepsy, but I really don't want to join any support groups or associations or anything. I'm not completely sure why, but I suspect it's because her case is relatively mild, and I'm not sure that I really want to face all of those other parents who deal with much worse cases on a daily basis - I'm not sure I could take it, and I think I would feel guilty complaining or looking for support when I have so much to be thankful for, kwim??

Anyway, it seems as if things have settled down at the moment. After the episode at school, her neurologist brought her medication level down just a touch - still higher than it was, but lower than the big jump we did all at once - and she seems to have adjusted well. Since the dosage change, she has had no seizures that I know of. Quite a change from the 6 seizures she had over 4 days before the meds were adjusted. In addition, she seems to have gone back to her usual amount of energy and sassiness, and hasn't had any issues at school.

I have noticed that over the last couple of weeks, her behavior, which is always a challenge, has been kind of out of control. It's hard to deal with her and try to remember that a lot of the behavior issues are not entirely within her control, but a result of the medication. We have changed the meds that she has taken before in an attempt to control the behavioral effects, and this med seems to be a bit better for her, but as the dose is rising, so are the behavioral side-effects. I'm kind of at my wits end with the whole thing. *sigh*

Anyway, I appreciate the opportunity to vent... Smile Thanks, ladies...

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

That's why this board is here. Glad things worked out and they adjusted the meds. Will they put them back at the level they adjusted them to first originally? My friends little boy is apparently getting an MRI soon. He'll be 4 soon.

Sweet Pea Twins's picture
Joined: 09/08/09
Posts: 922

I think they are planning to leave them where they are now, unless she starts to have breakthrough seizures again. The level she is at seems to be doing the trick, atm.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Glad to hear her meds are under control again, and not controlling her as much!

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

That is good that the level is good. Prayers for no break through seizures.

Joined: 05/05/04
Posts: 435

A friend of mine's son has a form of epilepsy that has a syndrome name associated with it. For him, they've had a lot of help with the keto diet or something like that (I know it's lots of fat to help with fats in the brain).

Other than that, maybe having her talk about it at school - like a day where she does a presentation and talks about it - would help? My daughter is 7 too. I'm not sure if she'd like to do something like that or not, but that mostly depends on her personality.

(((hugs))) and welcome to the group.