Epilepsy & ASD

[jules40]

Hello there! I havent posted for a while, but was wondering whether there were any mums in a similar situation to myself, that have a child with asd and epilepsy.

 

My 5yr old daughter was diagnosed July 2005 as having occipital epilepsy, was also around same time we were given asd diagnosis.

 

We have had quite a tough time with trying to control daughter's epilepsy, and have just recently had to add a second med to the first one already being taken. This whole epilepsy things is really scarey at times, and horrible to see your little one suffering so much. I would of thought I would be used to coping with seeing her have the seizures by now, as they have been going on for almost 18 months now, and still seem to happen every third week, although had a 6 month break between Sept-March seizure free, but there back again 3 weekly.

 

Would be really good to hear from other mums in same boat, particularly in the Londo area as there are no real support groups for mums with kids who have epilepsy.

 

Jules

 

[Zemanski]

I know someone who understands this very well from personal experience - PM me if you would like a contact

 

Z

[bid]

Don't know if this is any help, but I work with young adults, many of whom have both severe epilepsy and ASC.

 

Bid

[aro]

Jules I'm on NSE forum! my daughter (3&3/4) has epilepsy (right temporal lobe) abs and comp parts. She is having a 24hr EEG to try and find out what activity is happening as it's hard to tell sz's from ASD behaviour. Currently on Epilim but if EEG still shows sz's then will probably be adding carbamazapine.

Anna x

Edited June 15, 2006 by aro

[jules40]

Thanks for the replies.

 

Can I ask what's the NSE Forum? can you chat on there like MSN?

 

I am a member of the epilepsy.org.uk forum which also has a parents section where you can leave messages and the people on this site are very knowlegeable and this has been very helpful to me.

 

Jules

[aro]

Jules, annao is me, we are on the same forum, its run by NSE? Saw your post there too! Doesn't seem as many children with both as I'd have thought

Hope you find some more!

Anna x

[jules40]

Jules, annao is me, we are on the same forum, its run by NSE? Saw your post there too! Doesn't seem as many children with both as I'd have thought

Hope you find some more!

Anna x

 

 

Hi Anna

 

Recognise your username now on the epilepsy websit. Hopefully some more mums will reply.

 

Jules

[Hayden]

hello u guys, its hayden also from nse, i jus notice ur messgae on here, not been on cos of being in hospital like i mentioned on the other forum. thought id add to this as i have aspergers and epilpesy (sorry about splelling, head fuzzy cos had a few to drink).

 

when i was a kid i was more autistic than i am now, i now am higher functiononing (aspergers in other words) but i was ur typical autistic kid wiht the tantrums etc. i was lucky enough to grow out of it a bit. i think i wasnt that bad but i also have ADHD which made it look worse. so i have AS, ADHD, i have been classed as 'mentally ill' cos i have a panic disordr where i get pnaic attacks and part of that is cos i have OCD tendenceis. as well as epilepsy...

 

when i was a kid i was really bad with epilepsy, when i first had seizures id have partials near enough every day, (complex partials) and TC every week, maybe twice. i was constantly groggy and confused for months until they died downe abit to a norm of TC every month, complex every week or so. aged 12 they disappeared then at 14 i had a TC out of the blue, got back to a new routine of TC ever 2 months or so, complex every 2-3 weeks. started having absences not so long ago so changed from trileptal to epilim.

 

i have been on ritalin for adhd, i have taken oral diazepam to calm me down, im taking prozac at the mo. ive had rectal diazepam for going status twice and once for panic atatck/meltdown i had at school in year 11. (school had permission and one lady was trained). i was 15, had a bad day as had a bust up at home (my mums ex boyfriend was violent to me and her) so not a good start, then i got in trouble at school for skipping lesson, one kid found me and started picking on me and i jus blew off . i was shouting, kicking and hitting at him, i had 2 male teachers come to restrain me but i couldnt stand them touching me. i was like an animal - i was angry but also scared and was crying by now . they took me to the detention room and had to let go of me and i completely trashed the room. eventually (once id stopped throwing the chairs!!) they came in and tried to calm me down but it was so bad, ive never been so out of control in my life. i was crying and hyperventilating and i started hitting my head agaonst the wall and they jus had to do it. i jus couldn see an end to it, that was the worst panic attack ive ever had. i would never have been able to swallow anything so that was the andswer i guess. i havent mentioned this on NSE cos i thik they woudlnt undertand but people on here might have a better understanding.

 

i remember calming down i was shivering all over and i nevr said to anyone else before but i actually wet myself as well. i couldnt stop crying and thats the first time i told some one at school that my mums boyfirend had been hitting me, and i didnt actaully tell them the other stuf he did but i think they kinda guessed. they werent stupid though - they came straight out and asked if it was why id been cutting my arm but i never thought they knew cos my shirt coverred it even with a t shirt.

 

im sorry for rattling on, im trying to get over my panic attacks once and for all at them moment. so im going back to the main one. and i wanted to show it from the perspective of someone who has both AS and eplipsy and all the ###### that goes with it!!

 

Hayden

[JsMum]

last year J had lots of abscences and he withdrew a lot and then last summer he was unwell with chest pains and palpatations and he was all floppy, he was checked out for Epelepsy but it wasnt conclusive and treated for ADHD as he was already diagnosed because he was very hyperactive then his body burned out because his body couldnt keep up, the medication didnt suit J and he became very distressed and had really bad tantrums and his anxieties turned into pure panic attacks, and very distressing he still has palpatations and then this in turn adds the worry so J has to really keep calm but his ADHD makes that really hard and there is times where he is withdrawing but not as prominant as before,

 

I know there is a link with ADHD and Epilepsy, and I know that a lot of things upset J and that stress could make children more prone to epilepsy attacks, as I understand epilepsy stress can make it worse, as do missing meals and not drinking enough but I also know that epilespy is a very debilitating condition, add any other condition on top like ASD that must be very scary and confusing, there is a epilepsy support groups and I am sure there will be national epilepsy support too have the hospital not offered you any thing?

 

J has the all clear of epilepsy but his withdraw is a result of his Suspected ASD but seeing your children go into them selves like that is very disturbing and so you will need support for you and your family for your child.

 

J has his check up appointment today to just go throw his last 6 months, he hasnt had any more chest pains but he has had panic and palpatations and he has been withdrawn, and his behaviour is a real concern.

 

 

Hope you get something have you got a carers centre they can offer support also,

 

Js Mum

[jules40]

Hi guys, thanks again for the replies and support.

 

Good to hear from you Hayden, I hope your feeling better now out of hospital. A lot of what you say in your message is so very similar to how my daughter Sian is. She's started a new school a few weeks ago its a mainstream with two resource units attached to it, so the object is eventually integrating them back into mainstream with support.

 

I will admit its still very early days, but each day Sian comes home she is telling me so and so is hitting so and so, and this one's hurting that one, so she is seeing a lot of agression and violence in this new school, (although most of the kids are on the autistic spectrum so to be expected I suppose) got to admit she's no angel herself, but if she's seeing this every day she's is surely going to think its ok to do the same. Just very worried her behaviour is going to get worse instead of better.

 

I am contemplating waiting maybe 6 months or so to see if there are any improvements with her behaviour and if not think again about changing her school back to mainstream with 1 -1 support. She also seemed to really enjoy being in her previous mainstream school, she tried really hard to interact with the other kids, although when she did not understand something would tend to lash out, which obviously the other kids could not understand why.

 

I have been to a couple of meeting where there are parents with special needs children but none that have ASD and epilepsy. There are epilepsy support groups for adults but none in my area for parents with kids with epilepsy.

 

Anyway take care all

 

bye for now

 

Jules

[Hayden]

glad some things i can relate to. im liking the name sian at the moment, the girl who im chatting to in NZ is called sian!!

 

i think i remember as a kid and sian may feel this too, that it felt more like the whole world didnt understand ME, rather than me not understanding the rest of the world. i jus wouldnt understand why this teacher told me off for hitting someone over there cos he was messing up my model etc. like why was this wrong when he totally deserved it?! etc. i had 1:1 support in a mainstream school but they had a unit for special needs particularly ASD. i had to have counselling cos i took a change of teacher half way through the school year very badly when i was 9 but counsellimgs never worked for me. my teacher was also trained to react to my auras and deal with my many szs.

 

maybe this could happen for sian??

 

hayden xxx