My daughter is 15 months, and in the past 3 weeks has had 3 febrile seizures, 2 within 11 hours. They have all been witnessed by me. She also had an episode 1 week before all this that was not witnessed, but we believe may have been a post ictal state from an unwitnessed seizure during her nap. I took her to the Dr. and she had an ear infection with fever. We were referred to a pediatric neurologist who gave us a prescription for Diastat, as the seizures have been over 5 minutes. She also gave us a script for Keppra, to be filled if there is another seizure. Our insurance won't pay for the brand, but I have read about only bad experiences with the generic. Does anybody take the generic? Or do you all stick with the brand for any meds? We will likely pay for the brand and hope to only have her on it for a year. We are hoping she grows out of it sooner than later, nothing worse than watching your child and feeling totally helpless and having no control!
Im so med sensitive that all they have used on me were making me feel worse then the seizures them selves... Depacote might be one to ask about tho...
I trained my first dog, learned im suddenly allergic to 'dogs' and so am now training a standard poodle for the job. But my dog was placed with an 8yro boy who has seizures and autism. He Alerts and He Assists. Im sure it takes a load off the parents shoulders. With the many worries that occur when living with someone with this condition.
You might look into disability insurance as well. I know many disabled children are covered by it, but I dont know the particulars. Maybe someone here does and can comment about it...
sorry your having to go through this with your baby :(
Thank you! We are almost at the 3 week mark from the last seizures, which is as far as we made it last time. I will breathe easy when we get past it and hope to keep going! Unless she has another one they will all be assumed related to the fevers. Trying hard to keep her fever free.
We have a dog, and though she's not trained she has been spending a lot of time around the baby and I, more than usual.
Pets know when their people are stressed. alert dogs, do that naturally and people encourage and refine that ability. They cant teach a dog that ability, to predict. they are special. Assist dogs I think most likely do that to some degree on their own also, I assume this because of the dog I trained. Most of the magic was the dog, not me. you can encourage this nature in your dog to warn or hover by rewarding it. chickens a strong motivator ;)
My daughter is 2 and a half and was diagnosed with Epilepy at 8months. She has had a very hard case of epilepsy she has been on all the drugs and has now been on Keppra for about 6mnths. Out of all the drugs Keppra at the top the trileptal the others all have really bad side affects for children. Keppra has been used for years and the only side affects that they show is drowsiness and moodiness. If and when you have to use the drug I would definetly recomend Keppra. It is the best anti convulsant out there. I understand the stress and heartache you feel. Keep your chin up and a smile on your face I promise it helps your heart. Also with paying for your meds for you daughter you do not have to pay for the. Research the Katidavis program. You can set up your daughter to have her meds paid till the day she turns 18. Also if there is a waiting period call your local weare office or whatever and ask for the number for the state or local epilepsy foundation or just look it up online. They will also help you get the financial help you need. And if things get any worse and the dr isnt cutting it for you dont give up seek out an epileptoligist. Make sure hes for peds but they are the best when handeling epilepsy. If you are in AZ Dr. Caplan is really good. ID Dr. Bettis, he isnt an epileptoligist but he is a darn good neuro. I would reccomend him to anyone. If you need any help please dont hesitate to message me. I have info coming out my ears. And I remember when I was first going through what you are now. The no sleep cause your afraid if you sleep she will die. Watching all her breathing patterns checking on her every 5 and 10 mins. Not sure what to do. And then the flash backs while you sleep. I know how you feel and if her seizures to subside it really does just become a part of life you learn how to handle it for her not for you or anyone around you you do the best you can for her.
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