absent sizers - Epilepsy Message Board

patjam · 02-23-2004, 12:52 PM

Hello everyone on the board my son James(3 years old) has just been diagnosed with absent seizuers,and the doctor want's to put him on Epilem,he already has immune problems and receives 3 weekly globulin infusions for that,but i am worried to what effect it might have on the immune system the medication does any one know what this med is or are there any problems with this med that i should know about.Is there anything that i need to tell his nursery school anything that i should tell anyone at all,as much info as possible and or hints about this condition etc would be great.Iam just a very worried mother as he already goes through hell and back with the immune prob's.
Pat
P S Sorry if i have affended anyone in the last sentance.

Jodebra · 02-24-2004, 04:28 AM

QUOTE=patjam]Hello everyone on the board my son James(3 years old) has just been diagnosed with absent seizuers,and the doctor want's to put him on Epilem,he already has immune problems and receives 3 weekly globulin infusions for that,but i am worried to what effect it might have on the immune system the medication does any one know what this med is or are there any problems with this med that i should know about.Is there anything that i need to tell his nursery school anything that i should tell anyone at all,as much info as possible and or hints about this condition etc would be great.Iam just a very worried mother as he already goes through hell and back with the immune prob's.
Pat
P S Sorry if i have affended anyone in the last sentance.

[/QUOTE]

Hello Pat,
Please don't worry to much I have had seizures since I was small but no one knew about it so in a way your lucky that you know.I am 18 now(they only found out I had Epilepsy 2yrs ago) and they had tried all the meds they could find and nothing had worked but I'm on keppra and they have started me on Epilim which is what your little one is or will be taking and you know what it has helped me alot better I don't have as many twicths or fits none so far so thats saying something isn't it. Now the side effects are feeling hungry alittle more so they should be taken with food if poss,feeling very tired for a while, and mood changes.if the doctor says it's ok for your little one I reckon you should take it,it has worked for me and the less fits he'll have the more chance when he comes to my age he'll not have Epilepsy,or if he still will it wouldn't be as bad as you think,he live a normal healthy life.I think it is better if you told everyone even people at school so if he does go into a fit everyone will know what to do and know what the prob is.If you would like to know more let me know and I will try my best to answer your questions.Best of Luck Jo.

radasjewel · 02-24-2004, 05:50 AM

Hi Pat,
I have been on Epilim since I was 18 months, I am now 26. It has been a miricle drug for me. I was a very bad Epileptic when I was young. They actually counted up to 100 complex partials a day once.

With the use of Epilim I ended up eventually going to about 1 siezure per year on average. I found some of the side effects of it are an incredible appetite, I am forever hungry; easily bruises, I only have to poke myself with a finger and I bruise; also it makes the blood a bit thinner so if he cuts himself it may take a little longer to clot properly; very tired easily, I still need a minimum of 9-10 hrs sleep. It is advisable to let anybody who looks after your son everything you can possibily know as that way if anything should happen they are fully prepared. It is actually a good idea to have an emergancy plan to just in case something should happen. Also makesure that he is constantly watched as if he has a "blackout" and is near steps or a road he might just decide to wander into harms way. I had to change to a low level school when I was younger as I kept wondering off the two story buildings at my old one, thankfully someone always caught me. If you have anymore questions Pat I will be happy to answer them. YOur son was caught young and as Jo says if he is kept on his medicine on a regular basis and folows the docs advice he will be having few episodes when he is older.
Hope this helps Lori

patjam · 02-25-2004, 07:35 AM

Quote:

Originally Posted by radasjewel

Hi Pat,
I have been on Epilim since I was 18 months, I am now 26. It has been a miricle drug for me. I was a very bad Epileptic when I was young. They actually counted up to 100 complex partials a day once.

With the use of Epilim I ended up eventually going to about 1 siezure per year on average. I found some of the side effects of it are an incredible appetite, I am forever hungry; easily bruises, I only have to poke myself with a finger and I bruise; also it makes the blood a bit thinner so if he cuts himself it may take a little longer to clot properly; very tired easily, I still need a minimum of 9-10 hrs sleep. It is advisable to let anybody who looks after your son everything you can possibily know as that way if anything should happen they are fully prepared. It is actually a good idea to have an emergancy plan to just in case something should happen. Also makesure that he is constantly watched as if he has a "blackout" and is near steps or a road he might just decide to wander into harms way. I had to change to a low level school when I was younger as I kept wondering off the two story buildings at my old one, thankfully someone always caught me. If you have anymore questions Pat I will be happy to answer them. YOur son was caught young and as Jo says if he is kept on his medicine on a regular basis and folows the docs advice he will be having few episodes when he is older.
Hope this helps Lori

Hi
Thankyou few more questions if you can answer them
1 James already tires very easy will the med make him more so
2 How bad to the mood swings get
3 What sort of things should i let the school know about
4 Long and short of it how will the med affect him
Just thought of something else although the doctor has 99% comfirmed James has these sieures all three of his eeg have returned normal but the last one they could not even sedate him for well they did but he is so anxious over hospital visits his head would not switch off and fall to sleep,si if in fact that he does not have this type of siezures and he did go on the med what would happen and what would consequences are.(just mom in denile)

Again thankyou Pat

Exit10 · 02-25-2004, 08:23 AM

Pat,
One other side effect that may affect James which he will need a lot of moral support, is if his hair thins out a bit. It does grow back and reasonably quickly but he is likely to be a bit emotionally upset.

For school - just tell his teacher what he has, and what is likely to happen. If they are absence seizures and others can correct me if I am wrong, the feeling of confusion isn't as bad as say a tonic clonic, but trying to remember what you were talking about is really difficult. It's a bit like trying to pedal backwards on a bicycle really quickly to work out where the conversation stopped. If that is the case, just get the teacher to give a little prompt of the subject at hand and this will help him get back on track in a short period of time. [Each patient is different and I am only speaking from one person's experience.]

Another good thing to do is write yourself every dumb question under the sun and give them to the doc or neuro and DON'T let them answer with something you don't understand. Because you will end up with information overload write it down if necessary. Don't feel rushed by them, even if you have to really put your foot down. This YOUR child, not theirs and you have every right to as much information as possible.

Sorry about the rant there folks.