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AnnaM

AnnaM

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Just wanted to introduce myself :) ..My name is Anna, and I am married with 2 sons, Kaden (3) and Carson (2). My son Kaden has had 5 seizures we are sure of. We have had MRI, CAT, Ambulatory EEG, aggravated EEG, he has seen a geneticist at UNC (he had a metabolic panel that was off, reason he was sent to geneticist...but they feel he does not have a mito disorder based on other testing), and is going in this week for a sleep deprived EEG. He will also be seeing a pediatric endocronlogist early January (he is having other symptoms, besides seizures, that geneticst/neuro believe are pointing in that direction). I am also hoping for a sleep study to be done. He was just put on Topamax 3 days ago and I am FREAKING out about giving my son such a big drug :( ... His seizure this past July was a grand mal...I believe his neuro said he has nocturnal tonic clonic absence frontal seizures...Hoping I'm remembering that correctly.

Anyways, I wish none of us had to be here :(
 
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Hi AnnaM, welcome to CWE!

I moved your post the Foyer so more folks could see it and say hello. (You are of course welcome to post in the Nursery forum as well!).

You are right to be concerned about the medications -- AEDs are powerful meds, and can potentially have a wide variety of side effects. They can also potentially be problem-free -- every individual reacts differently. Best thing to do is to pay attention to how your son feels on the Topomax. Make note of any symptoms or behaviors that may be medication-related, and don't hesitate to discuss them with your son's doctor if you feel that any side effects are problematic or intolerable.

I hope the endocrinologist can point you in a helpful direction -- do they suspect thyroid issues?

Best,
Nakamova
 
Hi :)

I am not sure what they are looking for in regards to my son seeing an endo. Both doctors suggested a hypothalmic doctor due to low body temp at times (He said he was cold when it was 92 degrees outside! I checked his body temp 3 different ways with three different themometers - all read 94! I than brought him to the emergency room), Itchy head and clammy skin as soon as he goes outside, within seconds. He also sweats when it seems he should not. Ex: we were outside at the playground yesterday around 5pm...It was very cold for us here in the South, prob. low 40's..His hair was wet with sweat...This happens often, my son sweating to the point his hair is wet, when it seems odd to - nobody else is even tho they are being active as well. I thought maybe I was reading to much into until other parents started to notice as well.

Anyways, all that was suggested was hypothalmic disease, whatever that means.

Regarding meds, he sits up and talks in his sleep a lot more. He also wakes with a tummy ache - than it goes away. First night he was disoriented and very anxious 3 hrs into sleep after taking meds.
 
Hello Anna! Happy to meet you. So sorry for all that you, your son and the rest of your family are going through right now. It is always so hard when it is happening to someone so small. Please let us know how everything goes :)
 
Problems with the hypothalamus can cause disruptions in body temperature regulation, so that may be why the endocrinologist will be taking a look.

It can take while for the body to get used to the anti-seizure meds, so it's possible that your son's reaction to the Topomax will improve. But if it doesn't let the neuro know, and ask what your options are. Sometimes you can give a small dose of melatonin to help with sleep.
 
Hi Anna
Welcome to the group! My daughter Abigail was on topamax for 2 years it worked for a while but then stoped. The only side effect we had was weight loss and appitite suppresion. Nakamova is right, We used melatonin for sleep for a long time it really works well.
Use the search engine here to look up alot of topics. Someone here probably has simular issues as you do. There is a wealth of knowledge here to be tapped into. Plus an incredible support room in the padded room area.

Robert
 
Hi Anna,
My daughter has improved after making nutritional changes. She use to have 6+ seizures a month. She now hasn't had one in 11 months, and she remains med free.
Sometimes an alternative therapy will work.
 
My concern for my son is, how will I know if he becomes seizure free? His events are nocturnal..Couldn't he be having seizures that he does not wake from? Ones that would not be apparent to me? Is there a way for me to know? I'm only aware of the ones he has had when he has woken from sleep. Thanks for any help out there!
 
Please clarify...

:ponder:
Paorrin said:
Hi Anna
Welcome to the group! My daughter Abigail was on topamax for 2 years it worked for a while but then stoped. The only side effect we had was weight loss and appitite suppresion. Nakamova is right, We used melatonin for sleep for a long time it really works well.
Use the search engine here to look up alot of topics. Someone here probably has simular issues as you do. There is a wealth of knowledge here to be tapped into. Plus an incredible support room in the padded room area.

Robert
Click to expand...

Hello I'm Kaden's Dad. You wrote up above that Topamax worked for a while but then stopped. Do you mean it worked and then stopped working or do you mean you used it for 2 years and then the Dr. stopped it? Sorry just looking for clarification.... Thanks, :ponder:

Rickster8
 
Rickter8
We started the topamax to help stop the absent and partial seizures. She was on depakote and klonopin for drop/atonic seizures. Topamax did well for about 1.5 yrs had a 75% reduction in those type of seizures then started to have more and more about 20-30 aday we tryied increasing dose without results. The doctor thinks she might have out grown it so to speak ie they dont know. But when we started felbatol almost all seizures stopped and we came off topamax, halfed her depakote and she is toing great. The other reason we stopped some of her meds was she had an episode of liver toxicity so her neuro said let stop as many meds as possible and sence topamax wasnt working like it use too she stopped it. Also during this time we were tapering zonagan as it never did anything except cause drooling but when the liver acted up we stopped that as well. We are now 90% seizure reduction with felbatol low dose, half dose depakote, and klonipin. Remember everyone is differant also my daughter has three types of seizures. So our neuro tries to select meds that address these. Also my daughter has lennox gastaud syndrome which is known for drug resistance. But we try and keep our head up and always looking for new things and keep evaluating thinks done in past.

Robert father to abigail 11 yo SBH, LGS
 
Hi, Welcome to CWE. It was made by Bernard, out of love, for his wife Stacy.

That love permeates throughout the whole forum.

HUGS
 
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