does anyones child have absence epilepsy ?

[cheeryface]

are they medicated ?
has it affected their education , do school do anything special for them ?

ds2 has had absence epilepsy for the last 3 years. between myself and the doc we had aggreed not to medicate as it didnt seem to be having ill effects on anything .
since strating high school in september he has been struggling terribly.
we dont know how much is to do with epilepsy and how much is something else i.e add or other
he is regularly having total meltdowns where he is violent and suicidal.
i am trying to get to the bottom of it , camhs are too but they are a bit useless tbh.
i am going in to school soon as they have just labelled him lazy and easily distracted etc
what should they do ? whjat should i do ?
any info at all would be appreciated.
thanx

[JamMac]

Hi. My brother (adult) has very small absence seizures. For years he would complain that he felt spaced out, unable to cope, etc. After a long struggle to get a diagnosis (because the seizures were so small and a "walking" EEG was rerquired), he finally received Depecote as a medication. It has made a huge difference and the side effects for him have not been too bad. I would definitely recommended checking out treatment options. I have not heard of leaving them untreated.

[moosemama]

My nephew, who has AS, also has absence seizures and was diagnosed when he was about 8 years old - he's nearly 15 now.

As I understand it, he didn't tolerate medication well at first, but was ok with Valproic Acid, which is what they then kept him on. He's now being weaned off them and so far, he hasn't had any episodes.

I do know that his school work improved a lot after he was medicated - but then his seizures were so bad that he was losing bladder control several times a day, so he was obviously losing a lot of time.

[cheeryface]

Hi thanks for the info, i think most of ds2 problems are to do with the fact that he hates school . why he hates school i dont know. he seems to struggle remembering things , finishing work , getting on with people , concentrating and focusing on things he isnt interested in.

i began to wonder if he hates school because the absence seizures are making it too difficult and that in turn has made him hate himself and have the problems he does.

he keeps getting detentions for forgetting things etc and sometimes cant remember what exactly he has to do for homework.

i wish i knew whether this was down to epilepsy or something else!
i am wishing now that we had opted for medication before these other problems set in.

[humbugholder]

My ds2 has absence seizures. He is 6 and a half and has been on meds for about a year now. He has 6ml of Epilim liquid morning and night. He now has maybe one episode per week as oposed to several per day.

School were pretty awful over the whole thing. The Paed asked me to keep a seizure diary, which I did and transferred to school each day in his bag. In the space of 6 weeks I documented around 50 seizures and they never wrote up a single one. Thankfully the Paed accepted that was because they weren't bothering to look for them and so didn't document. They are sometimes very easy to miss. We opted for meds because ds was sometimes falling mid-seizure, occasionally wetting himself too. And one time he had one whilst on the toilet and fell and hit his head.

Ds is Autistic, almost non-verbal and in an ASD base special school. I explained to them that documenting absences and now his medication are essential in aiding his development. Often the child will lose a large proportion of what they took in during the half hour before a seizure. I got the impression they didn't think this mattered for ds as his development delay is so severe. For me it mattered all the more as I felt it was yet another impediment on top of those he already deals with.

I will be honest with you that getting the dose right and getting them used to the medication is not fun. Ds was hyper as hell for weeks and went from being fairly placid to hitting and biting himself and others. The Paed was great and reduced the dose back down to its start level and we then increased over a much longer period of time. He is now fine with it and the side effects have stopped for the most part.

If you feel meds will help push all you can to be seen again. Good luck xx

[farming4]

Hi, my ds is 4 and has absence siezures as well as myoclonic jerks. He is medicated with Sodium Valporate and it has made a big difference to him. Before we medicated him he was always tired and easily upset but now is a happy, outgoing little boy who loves life. We have had some break-through absences this week and have had to increase his meds so we're going through the hyper stage but it will soon settle down.

tbh we were reluctant to medicate at first cos I didn't like the idea of drugging ds but found out a friend of mine suffers from absencs too (been friends for years but never knew!) - she said that the absences made school very difficult cos she would "zone out" in lessons then when she came out of the absence she would have missed parts of the lesson and it made understanding things very difficult. Even a short absence meant she missed vital info.

We put of medicating for 6 mths or more through what his paed called "watchful waiting" but unfortunately his fits escalated and we ended up on blues and twos to A & E after a Grand Mal (thankfully the only one hes ever had)

Ds also has severe verbal dyspraxia but we don't know yet if the two are linked.

Tbh if I was in your shoes I would be trying medication so that it was one less problem for your ds to have to deal with - good luck x

[Lougle]

DD1 (5.6) has drops and absence seizures. She is medicated on Epilim and Keppra. We added the Keppra last week because she was having break-through absences.

[kissingfrogs]

Dd1 has been medicated for absences for just over 1 year. She had to be medicated due to the dangers - she had automatisms during her absences and would walk into traffic - and she would sometimes wet herself during an absence. She would also not have coped without medication because this was happening with increasing frequency and was very upsetting for her.

She was not behind on her school work before medication (ethosuximide) though most likely would have been if left unmedicated for longer. However, she has made little academic progress since being medicated. She is 1 yr behind in maths, her reading regressed, she suffered from lack of concentration and poor focus, poor working memory, speech impediment... to name a few. The medication stopped the absences as far as we could tell (no more walking ones) so she was safe which was a blessing and that was certainly worth medicating for. I can not say for sure whether the medication caused the bad effects or whether these were due to the underlying epilepsy (sub-clinical activity).

There was only one way to find out...

You are supposed to wait for 2 years of no seizures before weaning off meds. I decided to begin weanin off a few months ago, very very slowly. She has now been completely medicine free for 3 days. I have noticed, as the dosage got less and less, that she became mentally sharper and concentration improved noticably. There have been no absences that I can see.

I second farming4's advice though with caution. The contraindications of a med like ethosuximide include agression. When I spoke to dd1s first neurologist (when discussing behavioural side-effects of meds) I remember her saying that there was no risk unless such conditions were already prevalent. You would have to speak to a neurologist who specialises in childhood epilepsy (not a GP) to discuss options.

I do have to say that if it was my child who was becoming violent and suicidal and if I even suspected that it was linked to school then I would take them out of that school. But I know that is easy for me to say and that circumstances may make that very difficult for you.

[cheeryface]

thankyou for the info. on the one hand i am worried that unmedicated absences are contributing to his problems and on the other i am worried that they arent whats causing the main issue and medicating him may cause side effects that confuse everything even more.

aggression is an issue because he has recently become aggressive and i have been finding it very difficult to cope. house has been trashed , i have been shoved around , he has gone missing , allsorts.

i am also thinking that if he had been put on medication straight away he wouldnt have been struggling now (if it is caused by epilepsy) and would nt have the self esteem and suicidal issues . aargh i guess i am thinking too much.
if we choose medication then how, when we see the psych will we know what is him and what is the effects of meds.
i suppose theres no win .
sorry rambling on now !

[crazymum53]

Hello there. My understanding of your post was that initially you and the doctor (unclear whether you mean a neurologist or GP) decided not to medicate because at the time you made this decision it appeared that the seizures were not affecting his education. Now you are undecided about this and think that his education may be affected by his seizures so therefore I would suggest contacting the doctor and seeing if you can have a case review as soon as possible.
My dd has epilepsy (not absences but another type) and there have been no long term problems with her medication. In fact the overall result has been that she is calmer and better able to concentrate.
For conditions such as epilepsy things do not always stay the same. My dd has yet to reach this stage but is starting high school in September and am anxious that this may affect her condition too. I believe that the onset of puberty can affect epilepsy and related conditions as well.
hope this helps and that you manage to get the support you need from the medical experts!

[Jualsy]

There has been a natural cure for Epilepsy for decades. I have given talks at clinics about it and seen dozens of positive results, so I know it works.
Every morning take half a teaspoonful of Epsom Salts (Food grade) in a small amount of fruit juice. End of!
From then onwards you will see changes!!
A friend of mine was told by her doctor that she would be struck of his list if she continued "this rubbish"........she had grandma and was on the top rank of medication............Epsom Salts worked. The results are amazing.