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[jazabellegrl]

My name is Valene I have a 15yr old daughter with epelipsy that they are having a hard time getting under control. Im just trying to find out information and suggestions to help support and learn for my daughter.. She has had a seizure disorder since seven and now they are saying she has epelipsy .
Its been frustrating and scary the last couple of months she in away progressed in more dangerous levels and injuries from the seizures. As a mom I dunno what to do or say to her cause I cant actually understand what she is going thru but I definitly sypythize with her but I see the fear in her eyes and the frustration she is doing everything the doctors are telling her. I believe that she can live a happy normal life to the fullest its just trying to gain control of the seizures now.

My daughter since 7 only had 1-2 a year then in Sept they took a turn she now has had 12 seizures in 2 months been hospitalized twice and now having a extremely hard time getting under control She has been on Keppra 3000mg a day,Topamax 300mg a day, lamictal 100mg a day and they are gonna raise topamax and lamictal again next week and dylantin (only when she been in the hospital) She had a seizure at school and fell down the bleachers to finding her crumpled on the floor blood all over face to seizing a couple times a day. Her last ones were monday started with probably with a absent seizure her friends noticed so they brought her right home then a few hours she was complaining of pain in the neck area running up to the back of head called the doctor said it probably had nothing to do with seizures that it was probably a muscle spasm or neck sprain/strain that night she went to bed I heard noises went up stairs and she was seizing called the doctor told him what was going on said to get her to the hospital. She was combative so we ended up calling a ambulence cause we couldnt get her in the car when we got there they were already doing alot of tests on her right after they did her blood work not even two minutes later she started seizing again in the er they slamed her with advan 4 times and slowly she started to come out of the seizure she was so out of it she tried to talk but couldnt during this seizure she hurt her self they had a hard time trying to find out where cause she couldnt talk when they figured it out she had dislocated her shoulder which took 2 times to pop it back in place. The doctors came back and said no question she was being admitted again. The neuro is talking of sending her to a research hospital cause they dont know why they turn so drastically. Shes gone from absent seizures to grandmals and back and just cant seem to get them under control. She has in the past been on Tranzeme, zarontin,zonegran, and they tried tegertol and depakote but was severely allergic to them. Doctor is gonna talk to us on her next appt about the kegentic diet at this point Im will to try anything to see my baby happy again.

 

[Bernard]

Hi Valene, welcome to the forum. :hello:

Make yourself at home here. There's a lot of information already posted, but don't be afraid to ask questions.

 

[Birdbomb]

Welcome Valene

My heart goes out to you! Without a doubt your daughter need to have a complete evaluation! I hope they will be able to find the root cause of this sudden shift.

In the meantime it may be wise to keep a detailed diary of what she is eating, her menstral cycles, the outside stressors, sleep patterns and of course the seizures, no matter how small.

If she has such bad reaction to medication, it is possible she is also having a reaction to food items.
The diary will be you way of seeing any possible patterens to these seizures.

Please let us know how she does!

 

[RobinN]

Hi Valene - What a whirlwind you have been through. I know the feeling, though I have only had to deal with this for 1.5 yrs.
There is some evidence that girls with a seizure disorder have anovulatory cycles. Have you ever had her hormones checked? We also did a ovulation chart on my daughter. It also was proof her body wasn't producing progesterone. Could this be a cause of the increase in seizure activity for your daughter?

You know.. my migraines tend to start in the neck area too. Could she be experiencing the two together? They are being classified as similar lately.

 

[jazabellegrl]

We just started a diary on cycle cause when she was admitted this week she started her monthy two days in the hospital stay but I didnt think about the food she what she is eating so I will now try that too ty for suggesting it! Shiloh has arnold chiari malformation in the back of her brain md said its not whats causing the seizures but when he came in the hospital after reviewing her records he said the pain she was feeling in the back of her head may have been attributed to arnold chiari malformation. Its hard cause she has two things going on at once but the malformation is only a class 1/2 so its still at min as far as I know they have been doing alot of mri s the last few weeks dunno if the class is changed or if its the same. all the eeg shes had in the last couple of months are still showing abnormal even with all the meds she is on or had been on. Thank you for the suggestions on the food diary cause I never thought of doing that!

 

[Birdbomb]

Some foods may take several days to maifest into a seizure pattern. That is why a diary is imperitive, it enables you to actually SEE the pattern building.

Say she eats a lot of (chocolate/white bread/nuts/energy drink/whatever) but 2 days later has a series of seizures, most people would only look for a current stimulas, but if she has seizures 2 days after eating the (whatever) every time, you'll spot the pattern

 

[jazabellegrl]

I definitly will have her do a diary on what she is eating.. I know the doctor wants to talk to us about trying the kegetinic diet been looking up on that but it looks like most stop the diet after 6months have you ever tried it??

 

[Birdbomb]

One of the moderators on my site is a Keto diet coach. Her son became seizure free and medication free on the diet. He is now 18 but has some problems. He had a VNS implanted and it totally messed him up. If you like, I can have her get in touch with you.

 

[jazabellegrl]

please do I would forever be greatful!!!

 

[Birdbomb]

You got it! :tup:

 

[RobinN]

Please read this before going on the ketogenic.
There has never been a "study" done on this particular diet but it certainly makes sense to me. He has some comparisons on his site as to why he believes his direction is working where the ketogenic does not hit the bulls eye (my words).
http://www.dogtorj.com/ Epilepsy and diet page

Also Bernard has some great info on the Glycemic Index diet. As each person is individual, you really need to come to terms with what is happening nutritionally for that particular person. There are many food allergies and this can tip the scale tremendously. One can either do test after medical test, or do an elimination of foods that you believe might be causing problems. Or better yet, go to a very clean and simple diet for about 6 months and then very slowly start challenging the diet, food by food.

 

[Birdbomb]

Check your PM

 

[jazabellegrl]

Thank you for the information on the site I want to find out all the information I can on the diet before letting her go on it! Need the pros and the cons so I know what to ask the doctor when we go to our appt next week with him!!

 

[Bernard]

See the chart listed in my signature for info on the ketogenic diet, LGIT (low glycemic diet), modified atkins diet and GARD diet.

There is a forum based in the UK dedicated to the ketogenic diet. The parents and dietician(s) on the forum are very helpful:

http://forum.matthewsfriends.org/

 

[jazabellegrl]

Ty Im checking the site out that you listed it definitly has alot of information!!