Hi...my 11 mth old son just got diagnosed

[mom2marcus]

Hi everyone,

My name is Kim and my son whom is 11 months old, just got diagnosed with Epilepsy last Tuesday. Since then his seizures have increased tenfold and is upto 40/day and we are trying to figure out the right med mix. He was on Fenobarb for 2 days..and (the hospital gave him an iv of that) and he was so out of it he hurt himself and he tried clobazam and that was doing nothing..so we are onto tripirimate (sp?)..i hope it works..
I just feel so helpless and scared when he has them b/c he gets so disorientated and he's not himself. His seizures only last a second or so..the longest 4 seconds...and his eyes roll and goes limp in the neck..(if he's standing he looses his balance and falls..)...
Is there anyone else that has small kids that got dianosed??..
We are still waiting to get an mri and eeg done in a week or so..but the neurologist said it was epilepsy b/c she witnessed 2 seizures when we brought him in...

and advice would be great....

Kim
(mom to marcus)

 

[epileric]

Welcome Marcus's Mom

I'm sure it's pretty stressful finding out your son has epilepsy but after hearing the stories of other members here I think you are lucky to have a diagnosis so early rather than going years having seizures & not knowing what is happening.

I would recommend you take a look at http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/. Hopefully it will help answer some of your questions. Anything you don't understand please feel free to ask. The people here are very supportive & most can speak from experience- be it dealing with seizures or dealing with the medical profession.

Also remember that an EEG or MRI can come back with no visible abnormalities. That doesn't mean that it's not epilepsy. Somewhere we have a thread dedicated to those whose tests come back negative. You can do a search using the search option in the bar at the top of the page.

Also I would recommend keeping track of when Marcus sleeps, if he has insomnia, when & what he eats, moves his bowels & most of his activities as well as when he has seizures. Keep track of what he does during a seizure & during the post-ictal phase after the seizure. This might possibly make it easier to find what is likely to trigger seizures in him.

Meanwhile I would recommend checking out the Library for info & the Nursery to see if the other parents have any useful info for you.

Welcome again. I think you'll see that you're in good company here.

 

[Nakamova]

Hi and welcome Kim --

Eric has some good suggestions for where to start. I would also encourage you to ask the neurologist a lot of questions -- the more information you have the better. It can be helpful to write down the questions ahead of time (before an appointment with the neurologist), and then to also write down the answers.

Best,
Nakamova

 

[Jan4you]

HUGS to you and Marcus

First of all.. so sorry for ALL you and Marcus have been going through.

It breaks my heart...hope you find the answers Marcus needs and soon.

Talk about anything you need to ok Kim?

Again.. HUGs

Warmly, Jan

 

[RobinN]

Welcome Kim
I hope you find the support her need here at CWE. Being the mom of a child with seizures, I know how scary it is to see your baby helpless.

 

[Blondie47]

Kim

This is a wonderful place -- you will learn so much here. My daughter has been through several tough diagnosis's in her 14 years. Leukemia at 19 months, learning disabilities, and epilepsy recently.

My advice to you today, would be to take things one day at a time.

A huge support for yourself would be to purchase a binder, fill it with loose leaf paper and start a daily health care journal. Write everything down.
Number of seizures in a week or month, lasting how long, descriptions, etc. Record keeping is the way to go! It will make your life easier.

Be sure to ask questions-- I called the neurologists office 2x /3x a week in the beginning. Never hesitate to get the answers you need. You can always call the neurologist on call after hours as well.

Take Care :e:

 

[JRuner]

Welcome Kim and Marcus. It is good you found out early. I suspected my little girl had seizures for about three years before a do confirmed it and then fought just to get her meds.

God Bless you and give your little one a hug from all of us. Many hugs go out to you as well, as a parent I know how hard all of this is. My child has multiple health issues related to her in utero stroke which caused Cerebral Palsy but she is 10 now and cute little fighter tougher than both her big brothers! So i also know about traveling with a baby on oxygen and a feeding tube. Our special little ones, I believe help us grow into people stronger than we ever thought we could be!

 

[Bonito1947]

Hi Kim, I am Bonito 1947. I sympathize with your concerns for your baby boy. I will say what I would do if the baby was mine. Of course, follow all of the doctor's directions. But since you are the mother, I would pray continously for the baby's side. Simly lay your hands on the baby gently. You can pray anyway and use any words you wish.

 

[JRuner]

As said above pray always for healing. I will dedicate a daily prayer to your child and you.

God Bless!

 

[skillefer]

Hi!

Hi Kim!

you've gotten some really good advice here....don't forget that going through a growth spurt can also trigger an increase in seizure frequency. Growth spurts are physically stressful for children. As are illnesses like colds, and flu's ...as well as hormone fluctuations like puberty.