We're at the end of our rope - Epilepsy Message Board

marjm24 · 09-29-2005, 08:26 PM

I'm new to this forum and am looking for anyone with any kind of advice/support/resources/etc. My daughter Brittany has intractable absence epilepsy, along with tonic-clonic seizures and, as of this past Tuesday, myoclonic activity in both legs. She is currently taking Lamictal, Mysoline, and Zarontin, and has a VNS that is being rapid cycled. We have tried these 3 drugs in addition to Keppra, Clonapin, Zonagran, Depakote, and Topamax and we continue to have poor control. We are now in the process of tapering off the Mysoline because of hyperactivity, and will be switching the Zarontin to Celontin in the near future. The only drug to try after the Celontin would be Felbatol. Because she is not a candidate for resection, the only other surgical option would be corpus callosotomy. I'm investigating the use of hyperbaric oxygen therapy as an alternative, but it is very costly and insurance will not pay. Any suggestions, support, advice, kind words, and hugs would be greatly appreciated by our family. Good luck to all and God Bless.

bettyst · 09-30-2005, 09:18 AM

I wish I had some advice for you. I can only offer my prayers for her as well as the family. I pray that you can find something to control those nasty seizures. SOmetimes I wonder if our kids are on to much meds....we are at the mercy of the medical field. (HUGS)

buliem · 09-30-2005, 10:03 AM

(Hugs) here too. When I saw your title I laughed a little but only because I feel at the end of my rope much of the time too. That is so normal.

I truly hate E. My son may not be having major seizures right now but the meds and the seizures he had before control really affected him. He's just not the same kid. I know so many have it worse but it's still tough. Especially when classmates come up to you in the grocery store and say "Your son is freaky." (I set him straight BTW) Then there's the teacher who says, "well I knew he was special but I wasn't quite sure what it was." Special?! There is nothing special about this!!!!! She should have read his file before school started anyway. I hate the word "special" more than I hate E. Aargh! It's been a rough week. Just venting.

Anyway I'm so sorry you are having so much trouble with control. I know this is more common than we'd like to think. I agree with Betty that they give our kids too much drugs. I've had a fight or two with my son's neuro over this. My child fell asleep in class all the time last year and he had major cognitive side effects from too much depakote. Just know that you know your child better than any doctor. Stay informed and don't be afraid to speak up. The doctor's hate this type of parent (especially neuros) but it's your child not theirs.

How old is your daughter? My son will be 11 in November. He is the light of my life.

This is great place for support. I learn so much here and having people who have experienced similiar challenges makes me feel less alone.

Take Care,
Julie

marjm24 · 09-30-2005, 06:32 PM

Thank you for your care, concern and especially the hugs. More bad news today...just readmitted Brittany with status absence this evening. She was seizing for 25 minutes before they broke on their own. By the way, she's 12 and VERY hormonal right now, but a real trooper when it comes to this. Keep us in your thoughts and prayers.

bruce9494 · 12-01-2005, 08:29 PM

Nancy : At age 22 I started having grand mal seizures. I have been on many medications over the years, but 13 years ago my Dr. came up with the combination of tegretol and mesantoin. Oh boy, seizure free!! My problem is they have now stopped manufacturing the mesantoin and I have to transition to a new medication. Imagine the fear of going back to what I was. Never able to drive anywhere, depending on others to get me places, not even being able to bathe without someone in the house. This was very tramatic for my children also. I am now 55 and have three beautiful grandchildren, I work and I drive. I feel helpless not knowing what the future holds for me. My husband is very supportive and we have been all over trying to find this medication. I would like to take one of the people from Novartis Pharm. and have them live the life I did for one year and I know they would put it back on the market. I also told them so when during one of our many calls to them. I lost eight pounds in 4 days out of worry. I didn't need to lose any weight. Thank you for listening because no one else really understands what it is like to have a seizure and most have never seen one.
Nancy, How are things going for you now that you have been off mesantoin for a few months? What medications did they put you on? I start the end of this month and am very scared about my future. I have written to everyone including the President of the United States. I am getting no where. No one knows the fear of working and having a seizure while there. I have lost a job opportunity when they found out I had epilepsy. I would love to form some sort of committee and go to the White House to let them see these companies are in it only for the money and not our concerns. Good luck to you and please respond. Barb