Hi,
My name is Debbie and I have a daughter named Katie who has Complex Partial Secondary Generalized seizures. She has tried Depakote, Keppra, Topamax, Zonegram,Felbatol and is currently on Klonipin, Trileptal, Lamictal and most recently Vimpat. She also takes 3 mg of folic acid besides her multivitamin everyday.
She has a combination of drop attacks, tonic clonic and now she is having a less severe sort of tonic seizure. She used to be incontinent during the seizures but since taking Trileptal she has not had this problem. However, her sodium level is always a little low because of the Trileptal and that will probably be the med that we wean her off of if the Vimpat starts to help.
Her seizures usually happen around the time of her menstrual cycle. In fact, she had her first seizure(T/C) three months after her first period. It was 2 months before her 13th birthday. She has always had developmental delays, hypotonia and other neurological weaknesses. She has never had a real diagnosis. Kate did have a traumatic birth with the cordwrapped around her neck(5x) and was not breathing when she was born.
The latest MRI's do show atrophy to her cerebellum which was probably there since birth(but no definate answer on that either). If anyone has a similar story I would love to hear from you or get any advice that you feel might help Kate. She has been going to a local neurologist as well as a specialist at NYU Medical Center who has done two video eeg's but doesn't seem to know what to do either(except try new meds). She is not a candidate for surgery. She may benefit from a VNS. The latest advice was to get a shot of Depo-Provera because her hormones seem to be her biggest trigger. But, I'm not sure I want to try either of these two options. I look forward to your comments.
Debbie
Epilepsy and effects of hormones
Hi Debbie,
Thanks so much for your story. I have certainly heard about seizures relating to hormones but do not know much about what can be done. I know with my own teenage daughter, our own GP suggested she take a natural hormone supplement called EstroSense which is used to balance the hormones. However because your daughter is on medication, you would need to check with your doctor to see if there was any chance of an interaction.
Reading your story, I was shocked to see how many medications Katie has tried and how many she is on all at once. I have spent time with epilepsy experts who say "one medication at a time - period". The chances of side effects increase dramatically when you add a second and third drug. Also with the number of medications taken, with no stop in seizures, I would seriously consider trying something else.
If you haven't done so already I would try some diet changes. Have you considered the modified atkins diet - it is based on the same principles as the ketogenic diet but not as strict. I would really consider trying it before the VNS. This should be a last resort. There is a website called http://atkinsforseizures.com which can give you more information. Also test her for allergies as these can have a significant effect on seizures.
All the best to you and Katie.
Warmly,
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com