My son has had three seizures recently. They are not connected with fevers or, at least at this point in testing, any other obvious factor. Does any body know of a local group or website or listserve that has been helpful to other families going through something like this. Would be good to get some adviceon how to help siblings cope too.
We are still pretty "fresh" to all of this and some thoughts on medications, precautions, causes would justbe helpful.
Hey S. - the librarian in me inspired me to do a little googling. Try this link; it looked good:
http://epilepsyfoundation.ning.com/forum/topics/infants-w...
Here's a good one for sibling coping:
http://findarticles.com/p/articles/mi_m0816/is_1993_Feb/a...
S.,
Our oldest daughter started having seizures at 6 months. Initially, we would run to the ER because it was so scary. They just said that since each one stopped within a few minutes it was likely caused by a fever. (She wasn't having fevers but she was our first child and we didn't know to really question the ER doctor.) After about the 8th seizure in a 2 year period, we talked wiht the pediatrician who agreed this was not likely related to fevers and we were referred to Children's Memorial Hopsital in Chicago. (If you prefer Indy, I'm sure Riley's Chidlrens would be great also.) We saw a pediatric neurologist, Dr Cynthia Stack, who was great and hte whole facility was great. We learned alot about many neurological issues that our daughter had that we never connected the "symptoms" with a neurological disorder including reflux/projectile vomiting, odd birthmarks, learning impairments. We did end up putting her on seizure medicine but the doctor was great about having us try every year to wean her off because there are side effects especially for kids so the sooner the brain can be "re-trained" on the meds and get off the meds, the better. She is now 13 and hasn't been on meds for about 6 years and no seizures for that time!! I strongly recommend you get to a pediatric neurologist as soon as you can since there may be other things to be aware of and they can really guide you in the best options and the risks to be aware of. Good luck!
S. - I don't really know of any but, I have found Yahoo groups and Meetup to be good resources to find groups online. You might ask your neurologist or even call Children's. They will know of local groups. My prayers are with you. I am so sorry you are going through this with your little one.
Hi - I just wanted to reach out and say hi, and that you're not alone. My brother was diagnosed with epilepsy at 16 years old and just passed away last October at the age of 21 from SUDEP (sudden unexplained death in epilepsy). I hesitate to say hi because I don't want to scare you with my brother's story, but I also know that you're already scared and it's so hard to find people who understand what it's like to deal with this condition. My brother was an extreme case, but no matter where you're at with epilepsy, it's frusturating to deal with friends and family who think that it's just about falling over in a seizure once in a while. They don't understand the brain damage that can occur from repeat seizures, the risk of major injury or death from falling or having a seizure in the wrong place (top of the stairs, near a pool or pond, in the shower, etc). We tried and tried to tell our family what life was like for my brother, but they were still all shocked beyond belief when he passed away. So anyway - hang in there, and kudos to you for being proactive and seeking out the answers and support that you need. We're planning a 5K this October to raise money for epilepsy research, and the funds are going to CURE Epilepsy (cureepilepsy.org). They are more geared towards research, so I'm not sure that they're what you're looking for, but it's a great organization. You can also check out our 5K at www.PaulsRunForEpilepsy.org. Best of luck!
S.
How scarey for all of you.
Did you try the school district? Did you ask the doctor about support groups and therapy? I know there support groups for diseases. If you have a diagnoses you will find it easier to find families with the same issue. I have seisures but only as an adult. I had what the baffled doctors call a brain anomily. I cannot tell you what it is like for a child. All people I knew were adults.
I cannot say the drug that I am on is working well for me. I have problems and all they do is increase the dosage. I then have different problems. I do not think my seisures are caused from what they were trained to think. I think I am having trouble with gluten and my body having other issues. I changed my diet. I tried to lower the stress. Like that worked. My house flooded and we have a state of confusion. We cannot be home but our cats are. We are sleeping at my mother's house without a real bed. Life is awkard and I hope we can be back in before school states. I hope I can get it all done with no money or time. I just guess I live stress.
I know children can have seisures for many reasons. I know allergies can cause seisures, illness, emothions, body injuries etc. I would tell your daughter that it is not her fault. I know my son feels terrible when I have one. I would help her understand what to do. Simple thing like make sure there is nothing that can hurt him. Make sure that he can move freely. Just relax and watch until he is done. Tell her it is ok to be upset and scared. She can handle it. My son had to learn how to stop the car. I taught him just incase. I know you and your family will find freinds and will survive this. I just hope you have a diagnosis and can find families that way. It is nicer to have friends when you have a challange. I was lucky to have know people who were sick. When I got sick I knew what I was up against. I hope you can keep all your stress down. I would read on Mayo and other hospital sights. I would be in health food stores asking questions. I would look up all kinds of disease that cause seisures. I would read every drug treatment information I could get my hands on. Can you tell I am the kind of patient that doctors hate to deal with. I know you will find the answers for your family. You are the only advicte for them. Good luck and positive energy to you.
