help i dont know were to turn

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adele77

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hi all am new to this my sister reccomended it, am at the end of my tether my son has been havin absence seizures for about a year un noticed and has finally been diagnosed and medicated after his ecg we dont really understand it and could use some help learning about it.
 
Welcome Adele

I've always been the one with epilepsy but I can only imagine what my parents went through. There are a lot of parents here who can relate to you I'm sure.

Check out this thread on this site & see if it or any of the links help you out. http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/ If you have any specific questions, please feel free to ask. We can always give our experiences to help.

Also, when you said ecg, did you mean eeg?
 
yes was eeg my heads all over the place am really upset i got his school reports in today and we had explained everythin to his teachers and they are still sayin hes not concentratin we have been monitoring him closely and he has been havin upto 30 seizures a day its frightening me and thankyou will try that site :)
 
Hi, Adele,

I'm so sorry to hear about your son's seizures. It's esepcially rough having a child who has seizures, and trying to help him through it all.

How is he doing on his medication? Did I read right that he is still having 30 seizures a day? What medication is he on and how long has he been on it?

Hang in there.

Oh, and I almost forgot - welcome to the forum. I'm really glad you found us. :)
 
Hi adele77, welcome!

It's heartbreaking when absence seizures get mistaken for attention problems or acting out. Ask your son's neurologist to write a letter to the school so that they can better understand what your son is dealing with. If necessary, ask to speak with the head of the school to make sure the teacher's "get it."

I hope his medications is helping and that things will improve for your son. If for some reason the meds don't do the trick, you might want to consider trying the MAD (modified Atkins Diet) as a treatment. There's been a lot of success using this diet to treat absence seizures in particular. You can read about it more here: http://www.hopkinsmedicine.org/news...ins_Diet_Can_Cut_Epileptic_Seizures_in_Adults

Best,
Nakamova
 
Here in

the US, we have to have accomodations made for the kids, called IEPs, or 504 plans.

I'm not sure what they're called in the UK, but you're going to have to stand up to the school, and put your foot down. Insist that your son get the help that he needs.

I know we have a few members from the UK, maybe they'll chime in soon, and can give some better advice. I'll see if I can ask around.......ring a few bells as it were.

Anyway, stand up for your child, and remind the school administration that your child has just as much right to learn as the other children do. Then find out what you need to do to make that happen. Then do it. :)
 
Hello there Adele... and firstly, welcome to the forum :)

With respect to your son's educational needs, your very first port of call is to check whether your son's school has an AEN Coordinator (Additional Educational Needs). Most schools should have them. The next stage would be to get him assessed for Special Educational Needs (SEN) as it looks as if he definitely needs more support with his education. Now, the issuing of these Statements vary from county to county (no suprise there) but you really have to be proactive and insist that he is assessed.

Your Local Education Authority (LEA) may be able to help you more.

Seriously, best of luck and I wish you and your son all the best. It is tough having to live with epilepsy, whether you are the person with it or the carer. *hugs*
 
hi sorry not been on for a while hes still havin alot of seizures although they are dropping slowly, our concern now is they have put him on epillim and increasing his dose to 1000mg a day and his body is showin signs of distress with it hes vomiting all the time, complaining of stomach pains and falling asleep alot through the day. i dont know wot to do for him for the best, hes crying with the pains in his stomach and just want to get a bath but i darent let him as hes not allowed to be on his own in the bath due to his seizures, im also frightened as thats how i lost my best friend at the age of 12 , the other problem im finding hard to deal with is she had the same types of epilepsy and we live in the house were it happened im really struggling with it all.
 
thank you so much it means alot, its nice to talk to people that understand :) x
 
I'm so sorry things seem to be getting worse for your son. Have you asked his doctors about trying the MAD (Modified Atkins Diet)? It has a good track record, and might allow your son to reduce his dosage of the Epilim.
 
Hey :) You should deffo contact the school and ask for extra support for your son. I am not sure who my parents contacted but I got a support teacher in lessons and extra learning support lessons if I was behind. I will ask my mum who she contacted :D
 
thank you stephanieholly the school just dont seem interested at all, i asked them not to let him off the premises at scool on a dinner time as he has a few main road to cross and they keep letting him go out for lunch im really not happy that they are not listening to me the same as p.e there making him do sports outside wen the sun is blazing and not lettin him put his glasses on, this is one of his worse triggers :( i just wish they would listen to me or at least work with me.
 
This might be quite hard on your son to begin with... but if the teachers really aren't listening perhaps its time for him to change schools?

There should be help available like having support in class, for example someone to take notes for him if he has an absence. Seems go me that the school he's currently at doesn't have his best interests at heart.

My cousin had problems at school when she was about your sons age, but for a different reason (she lost her hearing due to meningitis). Eventually she went to another one after a year of teachers accusing that she "wasn't paying attention" and was much happier.
 
I know several other users have posted this, but in the US they have to accommodate for their medical disabilities. My son was getting in trouble for "not paying attention" then we found out he was having absence seizures all day long.

I'm a teacher myself so I know the law. I went to his school and told them, “He has epilepsy. I want a 504 plan set up for him. He needs extended time and repeated directions on all assignments. Please set up a conference for us to meet and get this accomplished." We have since done so and he had a MUCH better school year.

If your country doesn't have these measures in place, I can tell you what medicine my son is on. He's on Ethosuximide or Zarontin and it's been perfect for his seizures. (Mostly absent, occasional partials, possible TCs/no convulsing) My son is about to turn 9.

It may also be worth is to ask an attorney/lawyer about the laws in your country and find out if what they're doing is illegal.

We all wish you luck. I can only imagine how frustrated you are. I hope it works out.
 
could the vomiting be intestinal distress that is causing his seizures? It consider it being a cause and not a symptom of the meds
 
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