Epilepsy Infant

Lounge By sugarbees Updated 14 Mar 2009 , 4:49am by jlynnw

sugarbees Posted 11 Feb 2009 , 3:16pm
post #1 of 15

Hello..does anyone on cc have a child with epilepy? My 7 month old son has just been dx with it ... it is scary and so many unanswered questions we go to Childrens Hospital in New Orleans tom. so I hope most of my questions will be answered just looking for a friend whom might understand..thanks Karla

14 replies
Shelle_75 Posted 11 Feb 2009 , 11:23pm
post #2 of 15

I don't have any experience with epilepsy, just wanted to say I'll be keeping you and your son in my thoughts. My baby girl is 7 mos. old and I can't imagine the fear you must be feeling right now. Please take care.

summernoelle Posted 12 Feb 2009 , 1:53am
post #3 of 15

Oh no. I'm so sorry for what you're going through. I don't have any advice either, just make sure the doctors you go to are caring, explain what is going on in your child's body, and help you through this.

Good luck...

sugarbees Posted 12 Feb 2009 , 2:16am
post #4 of 15

Thanks so much ladies I will update when we get back...please do keep Jake in your prayers...Karla

mkolmar Posted 12 Feb 2009 , 2:47am
post #5 of 15

I'm pm-ing you with my mom's email address. She use to be the administrative assistant for the Epilepsy Center for almost 20 years. She's Knows a lot about it and can point you in the right direction.
There are around 2,000 different types of seizures.
My cousin also has epilepsy. He had/has grand mal (sp?) seizures since he was about 1 year old. He is now 16 and doing good with med's.

summernoelle Posted 13 Feb 2009 , 2:04am
post #6 of 15

Sugarbees-how did it go today? Did you get any answers?

sugarbees Posted 13 Feb 2009 , 2:24pm
post #7 of 15

Hi ladies..sorry we didn't get back until last night..they couldnt tell us why he was having them but said he was having complex partial seizures and he also has myoclonic jerks at other times.. They put him on Keppra twice a day..we have to get a MRI done but they will have to sedate him to make sure there is no abnormalties in his brain but doesn't think that is the case..so hopefully the meds will work .. I will go check my box for that email addy.. I truly appreciate the kind words and prayers ladies.. I will keep everyone up to date..Thanks again Karla

summernoelle Posted 13 Feb 2009 , 6:39pm
post #8 of 15

OK, I'm sorry you didn't find out too much.

Good luck with the MRI. My son had one when he was about...16 months or so. (Fell, hit his head, started vomiting. Scary!) If they don't have to sedate him, they will bundle him up in blankets like a papoose. They let my husband stay in there with him to keep him calm.

Please let up know how it goes, and what you discover. Here's praying that there is nothing more serious. icon_smile.gif

MichelleM77 Posted 20 Feb 2009 , 4:19am
post #9 of 15

I can't give you any advice because it sounds like you are being a strong mother and doing your research. Ask questions, be a good advocate for your son.

I had epilepsy as a child and no one knew why either. Electrical storms in my brain I was told. How exciting. Luckily I didn't have many, but the meds made me sooo hyper! LOL! Mom put me in ballet class to work out some of my energy.

Stay strong....

xstitcher Posted 20 Feb 2009 , 7:33am
post #10 of 15

So sorry to hear you and your family are going thru this. It's so difficult when a little one has to go thru this. My thoughts and prayers are with you and your family and I will say a special prayer for Jake.

God Bless you and yours.

sugarbees Posted 20 Feb 2009 , 1:08pm
post #11 of 15

Thank you so much ladies your kind words and prayers mean a lot .. we are taking it one day at a time.. still waiting for the mri to be scheduled..we finally started his full dose yesterday so hopefully the will kick in and make the seizures stop it is so scary to see your baby like that and be able to do nothing about it...thanks again

sugarbees Posted 20 Feb 2009 , 2:58pm
post #12 of 15

Thank you so much ladies your kind words and prayers mean a lot .. we are taking it one day at a time.. still waiting for the mri to be scheduled..we finally started his full dose yesterday so hopefully the will kick in and make the seizures stop it is so scary to see your baby like that and be able to do nothing about it...thanks again

VannaD Posted 27 Feb 2009 , 2:45pm
post #13 of 15

I dont have any advice either, just wanted to let you know im thinking of you and your son. I was also curious as to where in La. you live? im in denham springs, right outside of BR.

sugarbees Posted 27 Feb 2009 , 4:07pm
post #14 of 15

We live in Dry Creek about an hour from Lake Charles.. we will be coming to Baton Rouge in April for the Seize the Day walk for Epilepsy it will be at LSU.. I have a nephew who play for the tigers.. after the walk we are headed your way to the new Bass Pro Shop.. we go to Cabelas in Gonzales when going to N.O...
We are having to up his meds because seizures are still coming on strong..still waiting for the MRI so I will update after that..thanks ladies

jlynnw Posted 14 Mar 2009 , 4:49am
post #15 of 15

my dd had her first mri on her first birthday. It was not the day we had planned. I cried a lot. She has several issues but the seizures are the most noticable. The dr that we loved the most gave us this advice. "I don't care what anyone else tells you, you have a normal daughter who will do normal things, and live a normal life. The first time you treat her special and different, you will lose all that. She will be the girl with the problem, the one that is laughed at and made fun of. I am a DR and see it all the time. Relax. She will fall and get hurt. You will pick her up kiss the booboo just like every other mom does." In the comming years, that advice will be hard to take. I have a fear of slides, she loves them. I have a fear of her riding her bike, she rides almost daily. It takes a few years for it to sink in and have other children before I understood. I worry about all my babies and always will, the epilipsy is just part of her life and make her who she is. She plans on being a pedi neuro to help others like her. She is kind and compassionate. She does not have a fear in the world, hate spelling, loves to read and ride her bike. GMa always tells her how different she is and she needs to be treated special. She tells her, I may have a seizure today sitting in a chair hating life, I may not have a seizure riding my bike and playing with my friends. I chose to live and be happy.

I hope things work well for you and your family. I pray you have the best of the best of doctors, only good information, all the support you need, and you will always have my ear when you need it!

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