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

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

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

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

Thanks Big Mama will look into the book you mentioned. I would like to know how I go about downloading the form from Sunderland University which apparently you have to fill in before they send you the kit. Many thanks again Jules

Hi all! I have'nt posted for a while but really am unsure at the moment about what to do for the best. My 5yr old daughter has recurrent urine infections, and ear infections, and also suffers with really bad gas. She is forever letting off wind and constantly belching. Her behaviour seems to be getting worse by the minute, she is constantly using bad language, and things just seem to be going from bad to worse. She was diagnosed in July with ASD and co-morbid learning difficulties, and I am still trying to get to grips with the diagnosis and am still learning about it. She also has epilepsy and has to take medication daily. I have read some of the posts about the gluten and casein free diets and would like to know some more about it. What sort of things would I take out from her diet if I were to start the gluten and casein free diet. She still has her milk in the morning, and eats yoghurts, stringy cheese, pasta, rice, and lots of other dairy but she does eat alot of fruit. I must admit she does tend to eat a lot of sweeties, which I know have a lot of additives. I suppose what I really am asking is do I send off for the urine test to be done or just start off with the diet to see if there is some reduction in her urine problems, and behaviour problems. Forgot to mention she is having an ultrasound scan again in January to see whether the urethra tubes are still 11mm and 12mm or have got smaller/bigger. Just wondering what the next step will be as she has been on antibiotics it seems every couple of weeks, and before long her body will become immune to them as she takes them so often. Really would appreciate some advice. Jules

Thanks again for your replies. I live in Hendon, and at the moment the only group i've become involved with is with MENCAP and they are only once a month. Mind you they are started up more after Xmas to cover other areas. Sian does tend to have bursts of shouting out a lot in class and in assembly, as they keep a home/school book which I have to write in each day and so do the school. Looking back at this she seems to be doing this most days, then obviously she has to be removed from the room. The school has a woman coming in from the LEA (for autism) been in once before to observe Sian, she is coming in to work with the Learning Support Assistant to try and show her ways of dealing with the behaviour etc. Id o hope they can work through all this with Sian and her support as Sian really does seem to enjoy going to school. I have chatted to other parents about how well SIan seems to be doing in her school work, but she still seems to be having a few problems with putting pen to paper and anything to do with writing her name or letters. I have tried to work with her on this at home but she's the same with me, maybe she's still too young and with her gdd maybe it will take a while for her to get to grips with. Bye for now Jules

Thanks for the replies, it seems over the last few days after trying to explain to Sian that swearing is bad and that we must try and not do this, she used two swear words at home and I told her she would have to go to the naughty room and stop there until she apologised and calmed down. Waited a minute when she came out she apologised and I had no swearing for rest of the day. Hopefully this has done the trick, so should'nt have to put her in the naughty room again. I was wondering whether anyone knew of any groups in the NW London area where mums with kids with ASD can get together for a chat and a coffee. AS this is all still pretty new to myself and my family, it still feels quite scary not knowing what the future will hold for my daughter. Jules

Hello again. Has anybody had the same problem at school with their child swearing and shouting out to the extent where they are having to be removed from the class quite a bit. My daughter Sian 5 yrs started mainstream school with a statement in Sept, she seems to have good days where there is hardly any swearing atall to days when she cant stop. This is getting to the stage where I dread picking her up from school. She has also been picked to play an angel in the Xmas play at school which i'm dreading to be honest, dont know how's shes going to be. I must be honest and say that we do have the odd swear word said at home but not to the extent that Sian is using it. We have tried to ignore the swearing when she does it, this seems to help for a while then it starts again, they have tried this tactic at school by ignorning her also, seems to work for a while then will start again. I was also wondering whether the bad language could have anything to do with her ASD, or the epilepsy. Just wondering how much more the school will take. Jules

Hi i'm new to the site and would like to tell you a little about my 5yr old daughter Sian. Sian was diagnosed about 6 weeks ago with ASD and shows a lot of autistic traits, although she is also at the high end of the autistic spectrum as she has come along in leaps and bounds with her speech. It has even been mentioned by a few people that Sian shows more Aspergers Syndrome traits than autistic traits, as she is really quite bright and has a very good memory for names, numbers, and is obsessed by very odd things, ie newsreaders, collecting and hoarding of all my creams, bottles anything where she can gather half a dozen of the same thing. She shows no interest in toys, only books, and puzzles, she loves listening to music. SIan also started to have seizures in March and has had 10 up until now. SHe was diagnosed with left temporal lobe epilepsy in July of this year and had been on two different kinds of medication since. So I was wondering whether there are any parents with children with Aspergers Syndrome who also have epilepsy, or is this more with autistic children. Would be grateful for your advice. Jules