20 month old just diagnosed

Penelope - posted on 11/11/2010

cheryl
i know how scary it can be to get the diagnosis and then have to give a med you dongt treally know much about to your child. I suggest you dont wait on starting the med cause it will help your daughter. My son damian is 8 he was diagnosed with Lennox-Gastaut syndrome(epileptic disorder)when he was 2. thru the last 6 years we have tried several drug combos trying to get it right. He has multiple seizures a day. As far as types he has abscence, drops, myoclonic, complex partials, and tonic clonic. Right now he takes 6 ml keppra 2xs a day and 1mg of clonazepam 2xs a day. We found out the types of seizures by having both a sleep deprived EEG and also a 24hr video EEG. his nuero also has me keep a journal of any new movements or occurances during his seizure activity. Damian had a MRI when he was younger and it came up normal. No i do not have an med alert braclet for him but is a good idea for when he is not with me. good luck
penny

Elissa - posted on 11/11/2010

Oh... and I should say that at first I actually considered going without the meds as well, because his first 2 generalized seizures were 10 months apart. He had his 3rd about 2 months later and my mind was made up from there. I couldn't live with it not being under control... because I was worried every second of every day when the next one was coming. As scary as the medication is, living in fear of another uncontrolled and unmitigated seizure is far worse.

Elissa - posted on 11/11/2010

My son was around the same age when he was diagnosed. His seizures have changed over time, so being able to label them hasn't been as important as writing down observations of what was happening during the seizure. I keep a log with all his information on it.... and have on there descriptions of all of his seizures that I have ever seen him have. It is pages long, but it has been invaluable for a couple of reasons. First of all, when I have had to call the ambulance, they want to ask a whole bunch of questions which takes my focus off of my son and are repetitious. I have all the answers to their questions written on the first sheet of the record.... they can read it themselves. Second, when I have appointments with the neurologist, they want to know exactly when they happened, what circumstances surrounded it and what it looked like, how long it was etc.... doing this has also shown me what the medications have been doing for him. His seizures are less frequent and less severe...

It is good to ask about side effects of the medications, so you know what to look for. Some have worse side effects than others, but some drugs just don't work for some kids. The goal is to find something that will control the seizures enough so you can go on with your everyday life without having to worry about it every second.

We got an MRI, but I was told that prior to 2 years of age there is so much growth and development in the brain, it doesn't tell them much. So in Canada anyways, they tend to wait until after their 2nd birthday unless there is reason to suspect a brain tumor or other emergency type reasons.

My son does not have a medical alert bracelet because at the age his is at (4 years old) he would never be without an adult who knows him anyways, so it seems pointless. We might consider getting one when he goes to school.

And take heart... it does get easier. I completely freaked out for about the first 15 seizures or so.... it helps to start to see the pattern. Since then I have been able to show all of my other kids what his seizures look like and been able to talk them through so they are freaked out by them either. This is just something we have to deal with in our lives.... the calmer everyone stays, and the more information everyone has, the safer my son is. His 6 year old brother is now usually the first one to notice he is going into a seizure. :-) Hope that helps... E

Cheryl - posted on 11/10/2010

Yes, I am on the epilepsyfoundation.org website. Thank you both for your responses. I am thinking about going ahead and starting her on the Keppra though. Just kind of scary, ya know?

Amber - posted on 11/09/2010

I have never even thought of medical alert bracelets. What a great idea!!

Chelle - posted on 11/09/2010

Hi Cheryl, are you on the epilepsyfoundation.org website too? Cuz I think I saw your discussion on there too.

Anywho, my son was just diagnosed this past August and we don't know all the kinds of seizures my son has. We know one of them he does have are tonic-clonic (aka grand mal) seizures. We suspect he has myoclonic seizures as well. The only way you can figure it out is to work closely with your doctor. Maybe ask for a 24 hour VEEG so that you can mark when she is having what you think may be seizures and they can see themselves what is going on and see what is going on in her brain during those times.

I would start the meds though. My son has been on many medications and admittedly the hardest to start him on was one for his seizures. It really scared me cuz this is his brain it's messing with you know? But since we have started it he has started to finallly develop and is talking and doing all sorts of things. It's like a night and day difference! Talk with her doctor about your concerns and then I would start her on them asap. :) GL!

Also, I don't have a bracelet for my son but I wonder if I should especially since he has grand mal seizures so I would like to see what others do if they do anything.