Feeling a bit frustrated and need help.

[blnaslater]

Hi there! I have a 7-year-old daughter with epilepsy and she has been on 6 different medications since her first complex partial seizure back in 2006. She currently takes Trileptal and Depakote and wets the bed most nights. She wears a pullup and sleeps on top of a folded over bath towel with sheets and a mattress protector and still manages to wet through everything each night. I have tried everything I know to try and nothing works. I recently began waking myself and her every 3 hours to take her to the bathroom and it seems to work but now I am feeling super out of it during the days because I am getting such broken up sleep and I know that she is also affected by this. Her grades are steadily declining (especially math) and I feel so helpless. Can anyone give me some suggestions? Maybe you have been through the same thing?

 

[Nakamova]

Hi, and welcome to CWE --

Have you spoken to her doctors -- do they have an explanation for the bedwetting? Is it a side effect of the meds, or is it due to seizures?

Best,
Nakamova

 

[epileric]

Welcome blnaslater

I really don't have any advice but I know I had lots of trouble with school too, especially math and English but I still want to say "Welcome to the site".

You might want to check out the nursery on this site & see if any other parents have/had similar problems.

Meanwhile try to compensate for your lack of sleep. Dealing with illnesses in children is pretty stressful & we deal with stress so much better when we're well rested.

 

[Zoe]

This turned up in a search on Google. I haven't read it all but you may want to check with your pharmacisty who can quickly find out if her medication may be a problem.

Topomax... The Dreaded......... | epilepsy.com
13 posts - Last post: Jul 8, 2009
... that the doctors did not pick up on as a side effect of a seizure med, was that a RARE SIDE EFFECT OF DEPAKOTE IS NOCTURNAL ENURESIS, ...
http://www.epilepsy.com/blogentry/960036

The other problems you mention may be side effects of the drugs or other unrecognized difficulties. You might want to look at this book, "The Side Effects Bible," by Fredeeric Vagnini, MD and Barry Fox, PhD. It discusses many drugs, what nutrients they may deplete and what to do about it. If your library doesn't have it, they can get it through inter library loan.
Zoe

 

[imwithcoco]

Welcome, and talk to the doc!

Welcome to the site. New here myself. Just wanted to say, although I'm not familiar with this particular side effect, Trileptal gave me nightmares so bad that I had to change almost immediately from it. My doc's put me on many, many different meds until she found the right combo that worked. Seems like I remember her telling me it was one of the worst meds for side effects. Consult her doctor again, and if you wind up unhappy if you're seeing a neurologist, you may want to consider an epileptologist instead. Exhaust all of your alternatives before doing something like surgery or a vagal nerve stimulator. Children have great success with the kitogenic diet, too. That may get her off of all, if not some of her medication while controling her seizures.

Stay on the site. Interested to see how she does.:twocents:

 

[McGill]

As with the others, welcome to the site! You'll get an arsenal of information from the members here, so don't be shy about asking anything!

 

[Zoe]

Also, you can do a Google search on "Modified Atkins Diet" "epilepsy" . The studies at Johns Hopkins are showing very good results in reducing seizure frequency.

They were doing some trials which participants could do from home rather than travelling to Johns Hopkins.

A New Choice on the Menu: Five Years of the Modified Atkins Diet ...
The modified Atkins diet is a less restrictive, higher protein and carbohydrate, outpatient-initiated dietary therapy for epilepsy in both children and ...
www.aan.com/news/?event=read&article_id=2621 - Cached - SimilarModified Atkins Diet Can Cut Epileptic Seizures In Adults
Jan 28, 2008 ... A modified version of a popular high-protein, low-carbohydrate diet can significantly cut the number of seizures in adults with epilepsy, ...
www.sciencedaily.com/releases/2008/01/080128113325.htm - Cached - SimilarMODIFIED ATKINS DIET CAN CUT EPILEPTIC SEIZURES IN ADULTS
Jan 28, 2008 ... In 2002, Johns Hopkins researchers began testing a modified version of the Atkins diet in children with epilepsy. The modified diet shares ...
www.hopkinsmedicine.org › Press Releases › 2008

 

[RobinN]

Welcome -
Curious if your daughter was dry prior to being put on medication?

I learned that there is a spot in the brain that takes time to mature to let the child know that they have a full bladder. My two boys were close to teenagers before the hormone kicked in. There is also a way that you can work to increase the size of the bladder, and reducing fluids. Also I seem to remember that soda can be a cause for this. You might try a google search if your daughter drinks the stuff.

I would bet the multiple medications are dampening the area of the brain that helps her to wake and feel the full bladder.

I agree with Zoe, nutrition is proving to be very helpful in raising seizure thresholds.

 

[blnaslater]

Thanks so much for the input everyone! I have talked with the Neurologist about this and she has seen a Urologist for the wetting issue but so far no one has been able to help. She has been dry for 4 nights in a row because I am getting up with her 2 or 3 times in the night to potty. She was fully potty trained for 8 months before this all began and magically, she began wetting the bed at exactly the same time that she began meds for seizure disorder. She just saw her pediatrician today for stomach problems that she is having and he believes all of her symptoms are directly related to her being overmedicated. I do not have much faith in her Neurologist so I think we will take a recommendation from her Ped. and get a second opinion from a Neurologist in Chicago.

What's the difference between a neurologist and an epileptologist? I wonder if it would benefit her to see the latter??

Any thoughts?

Thanks again!

 

[RobinN]

Stomach problems > seizures
Bed wetting > medication
Seems like your pediatrician might be on to something.

Curious again... so you mean to say that they put your daughter on meds after her first seizure?
Has any of your doctors mentioned that seizures can occur from food sensitivities? Has anyone taken a look at her diet?

 

[Nakamova]

An epileptologist is basically a neurologist who specializes in epilepsy. So ideally they'd be more up on all the different meds, potential side effects, treatment alternatives, etc.

Definitely get the second opinion, or even a third if necessary, and ask about dietary issues, as Robin mentions above.

 

[RobinN]

I am going to add something... ask about GI health and seizures. Not just dietary as I first suggested. That might be the root cause, but another symptom is intestinal inflammation and there are many secondary symptoms to that, one being seizures.

 

[imwithcoco]

I would say Nakamova's right about the difference between the neurologist and the epileptologist. The only thing I can add here is to always do your homework and check around on things like this. Second, third or fourth opinions aren't a bad thing. Remember, when you go to see her doctor, there are no stupid questions! Many times, if you don't ask they don't get answered and many issues will go unaddressed for who knows how long.

The city I live in isn't really that big. Not like Chicago, anyway. I don't have lots of doctors to choose from here, but I have a pretty good neurologist. I had been seeing her for a few years, going from one med to another, trying this combo and that, losing my license ever so often, and then on a routine visit she made the comment about not being an epileptologist or referring me to one, and I literally felt like an idiot because just had to stop and ask, "What's an epileptologist?". It made me think, maybe this whole time things could have been better for me if I'd seen a specialist. Even if I had to drive one or two - hundred miles every six months or year, it'd still be worth it to me.:twocents:

 

[Bernard]

Hi blnaslater, welcome to the forum. :hello:

... and magically, she began wetting the bed at exactly the same time that she began meds for seizure disorder.

That's not magic. AEDs can have powerful side effects.

 

[kimberlymeg]

Hi there! I have a 7-year-old daughter with epilepsy and she has been on 6 different medications since her first complex partial seizure back in 2006. She currently takes Trileptal and Depakote and wets the bed most nights. She wears a pullup and sleeps on top of a folded over bath towel with sheets and a mattress protector and still manages to wet through everything each night. I have tried everything I know to try and nothing works. I recently began waking myself and her every 3 hours to take her to the bathroom and it seems to work but now I am feeling super out of it during the days because I am getting such broken up sleep and I know that she is also affected by this. Her grades are steadily declining (especially math) and I feel so helpless. Can anyone give me some suggestions? Maybe you have been through the same thing?

I had such a hard time in math! It all started when I was nine and math was like hitting a brick wall. I've learned that the more active I am while learning something, the easier it is for me to remember it. Reading things out loud while I pace back and forth works for some reason. I really just suffered through school when it came to math though. Not doing the work alone definitely still motivated me to keep working hard. MUSIC ! Learning the piano again has helped me improve my concentration so much! It was frustrating at first but it has been helping.