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Kennyg

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Hi All,

Our two year old son (turns 3 in march) has been diagnosed with epilepsy.

History:
* 9 months ago - complex partial seizure. Eyes rolled. Right arm limp.
* 8 months ago - simple partial seizure x 2. Right arm limp.
* then EEG - spike and wave + slowing - very focused on left part of brain that controls right arm
* then MRI - all clear
* 1 month ago - simple partial seizure - right face reaction. Slurred speech. Tight arm limp.
* 3 days ago, 2 days ago, today - same again but recovery time see slower
* now 24hr EEG
* tomorrow Tegretol

We've been resisting the meds - but starting to feel we have little choice.
Worried about giving our beautiful little boy mood stabilisers.

Does anyone have anything positive to say about toddlers on tegretol?

Thanks
Kg
 
Hi Kennyg, welcome to CWE!

So sorry to hear that your son is struggling with epilepsy. I know the decision to medicate must be tough. The main thing is to continue to pay close attention. Keep an eye on how he responds to the meds. If the side effects outweigh the seizure control, then there are still options -- a smaller dose, a different med, or no med at all. And there are other treatment approaches, including dietary ones that might be worth exploring.

At least one other parent here at CWE has a toddler on Tegretol, with positive results. See donnajane's post in this thread: http://www.coping-with-epilepsy.com...ast-friday-now-waiting-game-19308/#post212949

Best,
Nakamova
 
Hi Kenny, I am so very sorry you are dealing with this. My son (31 months) was just diagnosed this past weekend with myclonic epilepsy. Had has a tonic/clonic seizure on Dec 26th and the day after he was sick with a virus/fever. We had an eeg done and visit with ped neurologist. The saw some posterior bilateral slowing. They thought it was due to the EEG being done so close to the event. Fast forward to Jan 21 and we start noticing his eyes roll up for a 1-2 seconds and then back to normal. We started to track is and on day 6 we noticed again, and he let out a cry, so we knew he felt it. We went to the ER and had a video EEG overnight. They diagnosed him with generalized benign myoclonic epilepsy. We started him on Keppra this past Monday (4 days ago) at a really low dose and we still see the eye rolls. We are scheduled to up it this weekend. The entire thing has my husband (who is also a Ken:) really worried. The meds scare us because he is just a happy little dude, developmentally on track, and any change in tempermant really scares me. But, I also know that we need seizure control. I hope with all of my heart that he outgrows it but I know there are no gaurantees. I wish you well. Feel free to reach out and let me know how things are going.

Lara
 
Kenny, My heart goes out to you and your entire family. I was diagnosed with Temporal Lobe epilepsy when I was young. I am 55 years old now. i have been on Tegretol for 20 plus years. Before that I was on Dilantin. These never really controlled my seizures. I was having gran mal seizures. They did a anterior temporal lobectomy 22 years ago and I have not had a seizure since. I am still on Tegretol though. Everyone s epilepsy is unique in itself. I have some friends who's child was diagnosed with epilepsy and they put him on a strict diet. He has been doing well since with no meds. It seems to work well with young kids. Best of luck in the journey. Meds are not that bad. I was not doped up and a zombie. I have gone onto receive a higher education and have a wonderful family of my own. Be positive as millions of us live with epilepsy.
 
Hello,

I'm 24. Also have partial complex. From the first-person pov...when the seizures "generalize" from the spaciness and drooly seizures to grand mal, it's scary. I've been through it on many occasions. After a grand mal I also lose some motor function. It's temporary. It is a "post-ictal" state. I am on 4 different daily meds, 2 of which are above the FDA reccomended dosage. I also recently had a vagal nerve stimulator implanted. Before considering brain surgery, research that, consider drug therapy. The great thing about epilepsy is that it teaches you to value others, yourself, you become a fighter overall despite the occasionall struggle.

Regards
 
Oh, just in case they actually can find something in an MRI, there are different, uhhh, 'strengnths' of magnetism. I believe the standard is 2 tesla at 99% of hospitals. I had a 3 tesla MRI and still found nothing.
 
MRI's are not always a solution. They never found localization with the MRI. I had Telemetry and they took me off my meds to have a seizure and they were able to map out the areas of the brain where the activity was.
 
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