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DD just received epilepsy diagnosis

(8 Posts)
blondie1968 Sun 10-Jul-11 15:02:48

my 11 year old has had tests for the last few months and finally received a diagnosis of Juvenile Absence Epilepsy Syndrome. Meeting consultant again on 10 Aug but been told already she will probably be put on Epilem to control the absences. She's had a tough time of it at school, with one boy in particular (who comes from what everybody thinks is a lovely home with very nice parents) calling her a retard, both to her face and when talking about her to others. Pre teens is often a rough path to navigate on its own, let alone having other challenges as she has. She has coped so well with it so far, and I think she's pleased we finally know what it is but is worried it will progress into full seizures. I've said we don't know, but whatever it is, we'll cope and am stressing that she is not ill, this is just a condition she has to be aware of. So far so good, but I wondered if anybody has any good reference material it would helpful for us all to read? Many thanks.

TheCrunchyside Sun 10-Jul-11 15:30:36

Hi blondie

Sorry your dd has this dx and facing unkindness at school.
My ds got dx with this at 5 a few months ago. Was on epilim liquid for a while but he was getting hyper and we blamed it on the bight red colouring. Now on crushable tablets which can be a bugger to get down him.

Think we haven't got the dose right yet as still having loads of absences.

He's not teased at school despite the absences and his learning delays but kids are more tolerant at five than 11 it seems.

blondie1968 Mon 11-Jul-11 15:41:15

Hello there,

I think she's pretty lucky that it's just one boy so far. However, she is moving to high school in Sept and is already quite stressed about that (after being put in a class with no girls at all from her junior school). Am trying to get that sorted asap! Have heard all sorts of nightmare stories about side effects of medication, almost seems like having absence seizures would be a better option!! She woke up this morning and decided she's quite sad about it. She thought whatever it was would be short term and she would be "normal" again. Something for her work through I suppose :-(

TheCrunchyside Mon 11-Jul-11 18:00:17

So far the only side effects have been the hyper stuff but this was the colouring and has improved since he has been on the crushables.

It is a faff having to always remember particularly when I can't honestly say that meds are having an effect on the absences.

My philiosophy was to give the meds a good go - say a year - and then review and take him off if the gains seem small or non-existent. Saying that to your dd might make it all seem more manageable. if the meds work for her and she see improvements for herself in school work and with friends she may well be motivated to keep going.

Transistion to big school sounds v scary. So glad ds is only 5!

BrightonWalk Tue 12-Jul-11 16:21:22

I have a son who was diagnosed with Lennox Gastaut Syndrome, a rare and severe form of epilepsy. Its not the children who I get worried and upset about, its the adults who thinks everything or everyone should be perfect! My ds is only 6 years old and in a wheelchair when out and about. The barber refused to cut his hair because he doesnt stay still. He was also called a retard by someone too. There are some nice people but some really horrible ones. Be careful with Epilem, my ds had a severe reaction to this in the form of blisters/peeling of the skin on his fingers and toes. Keep a close eye on ANY epileptic medication as they all come with side effects. One on my ds medication is Clobazam and he would dribble a lot hence taking more medication to control his dribbiling. Good luck to your daughter and be strong.

turCENSOREDss Sun 17-Jul-11 17:23:27

Hi,
My son is 5 and has had epilepsy all his life but we had a real struggle to get a diagnosis and he only finally got diagnosed when he was 4. He has probably had about 700 seizures (all nocturnal except one) in his life. The good news is he was seizure free within about 2 months of starting on epilim (you will probably have to adjust it to get the best seizure control) however it did not agree with him and we moved him onto keppra.

He has been seizure free on keppra for nearly a year. He takes his medicine every morning and night and other than that, he never even thinks about epilepsy. Recently he was telling me about how sad it is that some people are disabled but luckily he has nothing wrong with him smile

He is really into science and I found a big list of famous scientists/geniuses who have had epilepsy. He is convinced that his epilepsy is because he is going to be an inventor and there are just lots of excitable neurons flying round in his head and sometimes they crash!

He is doing really well at school, top of the class in reading and science and is an utterly fantastic and beautiful boy. None of the kids know he has epilepsy. I asked him if he wanted to tell people but he said he didn't. (I think things might become different as he gets older though).

I still cry to myself that he has epilepsy and I am getting counselling to deal with my anxiety about him but I am aware that this is MY problem - not his. He is doing just fine.

By the way, don't listen to anyone else's experience of any epilepsy meds. They are weird in that one person will have no side effects but another person will have terrible ones. The only way to find out what is good for your child (unfortunately) is to try them. I was terrified about putting him on Keppra as I had read so many bad things about it but it is fantastic for him. he has had no side effects at all.

Good luck.

turCENSOREDss Sun 17-Jul-11 17:24:30

Oh and maybe join a forum for epilepsy. I am on Epilepsy Action. It is good for support and has a section for parents/carers.

PotteringAlong Sun 17-Jul-11 17:37:06

I am your DD but 20 (ish!) years on! I was diagnosed with the same at 12, put on epilim to control but it didn't change anything I could do- helped that my Parents were always v sensible.

At 31 I haven't had a fit since uni and no longer take the anti convulsants having been weaned off them about 8 years ago. I'm 22 weeks pregnant and have been monitored by the consultant in case of a recurrence (apparently the hormonal changes of pregnancy can kick start it again!) but have had no episodes at all so all good.

I can second the epilepsy association - some v good advice there!

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