Malika Report post Posted January 9, 2006 Hi to all. Last week on Wednesday I finally got the apointment for H with the pediatrician, I was very upset with the all thing as H was officialy DX in September 2004 and discharged with no more investigations. The paediatrician was quite good she booked a blood test for various investigation including Fragile X and all chromosomal investigation, she as well examine H and said that she is worried about his lack of balance has he seems to have a good coordination but no balance. The other point was about him having epilepsy (like absence epilepsy or reflex epilepsy) as there is history of epilepsy on H father side and febrile convulsion on my side, she has requested an EEG, H had strange hand twisting and facial grimacing since he was around 3/4 years old I thought it was some form of tics due to autism but notice that during those event if he can see me he cannot hear me, and he cannot remember what he is doing i mean he cannot immitate himself and how he is twisting his hand and jaw he has this many times a day when he looks at coloured paterns or lights flashing on computer game or paterns on PC or TV or looking at a fan, he does that as well when he is bored, he seems to get mentally excited and twist his hands and his mouth and jaws but it is not symetrical, he then suddenly come back to reallity conscious that he had a "tic session" but unable to record what was going on around him. As well it does increase if he is tired. Another point is that it is better if he plays on the computer with a light near him and not behind him (less contrast I suppose). After those access H usualy shakes his head and say something like OK OK. Can anyone tell me if their children or themself with ASD have long sessions (30 seconds 2 mns) of hand twisting wirling and facial grimacing, does anyone knows if it could be Tourette syndrome? or just body movement due to autism? or epilepsy? Malika. Quote Share this post Link to post Share on other sites
adamsmum Report post Posted January 9, 2006 I had a freand who's 2 yr old who had epilepsp.when she had an epesode she us to seem spaced out her eyes wher wide open and seemed glazed.She would twich befor an attack and somtimes during one. she wasent awer of wot went on around her when this happend Quote Share this post Link to post Share on other sites
Tylers-mum Report post Posted January 9, 2006 From reading that, I's suspect it was absent epilepsy. Sorry. My son doesn't do any of the absenyness you described but he does have moments of facial tics. They can last several weeks/months but then disappear for several weeks/months. As of yet, I haven't linked it to anything or any situation etc but his tics are mouth twitching (tends to move his lower jaw to the right or left) and also eye twitches. His Pead noticed these during his last bout and suspected Tourettes but he didn't have the verbal tics and I think you have to have them both in order to get the dx. (verbal can be words, coughing, humming, clearing throat etc). I have since put this down to his Autism but I could be wrong, I dunno! Given your family history and from what you've described in your OP, I'd press on for a brain scan or tests for epilepsy. All the very best and keep us posted ok. Quote Share this post Link to post Share on other sites
Malika Report post Posted January 10, 2006 Hi Thank you so much Adamsmum, and Tyler-mum <'> for your reply, today we went to hospital and H had a blood test which should cover all sort of thing especialy fragile X. The nurse was very good and everything went well. I am expecting to receive a letter for an appointment for EEG to find out about epilepsy but this will take around 3 to 4 months. My idea is that H has some form of spasms which are not tics has they are not fast but quite slow and I was wondering if anybody else had this kind of experience with ASD or AS children, to bear in mind that this has been going on for 5 years and seems to get better at time but is always there and every day. Thanks again and I will keep you posted if anything comes up from the blood test. Malika. Quote Share this post Link to post Share on other sites
bid Report post Posted January 10, 2006 Hi Malika <'> I think it's a very good idea to have the investigations for epilepsy. I work with young adults who have severe epilepsy and related special needs. What amazed me when I started was that there are actually very many different types of seizures. Quite a number of them aren't anything like the sort of 'convulsions' most of us associate with epilepsy. I couldn't comment on your son's behaviour, but I think the paed. will have been alerted by the fact that he appears to be 'not there' when these episodes happen, hence the further investigations. Good luck, and try not to worry. If it is epileptic in origin the vast majority of people have their epilepsy very well controlled these days because of the advances in medication. Bid <'> Quote Share this post Link to post Share on other sites
rainbow queen Report post Posted January 10, 2006 just wanted to add you dont have to be verbal and have tics for tourettes-not everyone is same. my nephew has tourettes and its mainly movements that have effected him-like neck twitching,body movements ect..... my son has always made shakey body movements like quivers and recently started twitching his neck and [well im not quite sure how u put it in words] but odd movements of face neck and whole body,but i have no dx for him yet only global developmental delay-hes being monitored and assessed for possible as and other things- but my nephew he got dx with as and tourettes and ocd[he dont do the swearing or much vocal stuff], must add he eventually got dx in his 20s. Quote Share this post Link to post Share on other sites
007paul007 Report post Posted January 10, 2006 My son was diagnosed with epilepsy for the first time in 2004 when he had fits for the time in his life, he also has Irritable Bowel syndrome and is at the severe end of the Autism spectrum. He mainly has fits, but he has had absences about once or twice , before he started fitting however , in fact about year before he had his first fit, he had alot of tremors, which at the time was put down to anxiety or being frightened by something, even the pead thought that , looking back now with hindsight it turns out he was developing epilepsy. He does not have any tics of any kind though, so i cannot help you much there. Quote Share this post Link to post Share on other sites
shell Report post Posted January 10, 2006 the absence eplepsy is called peti mail (think that is spelt wrong ) i have suffered with this since i was 2 it can cause tics and the twisting of limbs. i have also been known to carry on walking while i am having them the tics can be a sign that you are about to start fitting i am quite lucky that the older children know the signs thats mummy is about to start fitting and know what to do, don't know if this helps but maybe looking for the triggers and or signs before this happens will help the doctors Quote Share this post Link to post Share on other sites
Malika Report post Posted January 13, 2006 Hi to all <'> Thank you so much, Bid, Rainbowqueen, Paul and Shell for your advice and reply , very helpful and comforting, what ever the EEG will show then it will be the start to either more investigation or may be treatment but there are probably 3/4 months to come before that. Now we are occupied by another important matter as we are going to move very soon for something bigger, we suppose to sign the contract on Tuesday and move soon after that this will put me of the board for a couple of weeks, and will have to deal with the change of school for H and all the rest.... I hope I will survive to enjoye the new house. Take care all. Malika. Quote Share this post Link to post Share on other sites