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HELP: myoclonic astatic epilepsy and my toddler

Mon, 04/04/2005 - 06:57

I am feeling at a low and a bit dispirited.

At 2 1/2 my son started having myclonic and atonic seizures, with three days clear and one horrible day.  We started with depakote liquid, but after a month he started having daily seizures.  We played around with Topamax, as he had a reaction, and are now slowly giving him more and more.  He had colds, and then fifths disease, but after it cleared we had seven days of peace and even the helmet came off.

Now he has a cold again and the seizures are back.  He is at the low end of getting Topamax for his size, and the neurologist feels that as we increase it his threshhold will rise. 

I am trying to be patient, but at each stage from the original diagnosis I keep thinking that this will be the solution.  I keep playing the percentages, and then we get the 10% catagory here or there.  As I read articles and personal stories I now find myself believing the 10% and not the 50% who outgrow it, etc.  I am stressed.  My logical mind and basic hope is being frustrated by reality.

In addition I feel that I have to prop up my wife, friends, family, etc.  I have no choice but to deal, but I am exhausted at this point.

What are other people experiencing with this type of epilepsy?  Can anyone recommend any solutions?  How do people deal with the unknown?  Loss of hope?  All of my usual tricks are not working, and this is my son.

 

Comments

RE: HELP: myoclonic astatic epilepsy and my toddler

Submitted by angel_lts on Sun, 2005-04-03 - 07:30
Oh I know it can be hard for I have been dealing with it for myself for 35 years. I have been on topamax and it gave me seizures. I had 20 a day twice from that topamax. I was put in the hospital and taken off immediately. But there is hope but alot of work. I have my ups and downs too. But I learned so much from it all.Also give him vit c more often. My kids take it when they feel a cold is coming on, and sometimes they have stopped it. For when you are not feeling well the seizures will come on more often. It is so important to have a very good diet too. I have done everything for my seizures, surgery, vns, medications, ketogenic diet..and now vitamins, oils... and I feel the alternatives have helped more than anything.http://health.groups.yahoo.com/group/EpilepsyApproach/Lisa

RE: HELP: myoclonic astatic epilepsy and my toddler

Submitted by 81skate on Sun, 2005-04-03 - 22:06
Our son started having seizures the end of January this year and we, too, are struggling with the meds and overall frustration.We've been on Tegretol, Depakote, Keppra and Topamax. None so far have been the solution although we are increasing the Topamax weekly as well as continuing the Depakote.We, too, think that with every new drug this will be the answer. It hasn't been so far. Yes, I can understand your helplessness and powerlessness.However, you also need to take care of yourself so that you can be strong for your family. Working out, breakfast with a close male friend, church, a walk alone, all seem to help my husband.And of course staying close with your higher power.We are working on seeing a marriage counselor to help us deal with this added stress. Our child does not need his parents to fall apart because of his disorder and lack of dealing with it.I will pray for you and your family. KM

RE: RE: HELP: myoclonic astatic epilepsy and my toddler

Submitted by angel_lts on Mon, 2005-04-04 - 06:57
Also the more mix of meds can make things worse. I was on two drugs all my life and the least amount of drugs you are on the safer it is. I now finally got down to one. I feel the best I have in my entire life having epilepsy(35 yrs with epilepsy)take careLisa-epilepsy approach support group

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