Loui

Hi all just a update. Gone back to Meme's doctor. Told her the Melatonin is not touching Meme and not really getting her to sleep any earlier but most of all she is not staying asleep. I feel like i have had a newborn baby for 8 years. She also is concerned regarding meme's stills. She has now referred Meme to a sleep clininc in Oxford. She thinks there maybe a underlined prpblem as Meme's sleep is so affected. They have done some Brain scans and a Digital Ambulatory. Waves on the brain scan when Meme was in rest period was iffy. So hopefully we will find out why her brain is sooooo active all day and night. She has also referred Meme regarding her food . As she is food sensitive and its causing some problems as she only eats few foods. So keep ya fingers crossed we get somewhere/ Until then 9mg of Melotonin is to be continued its the slow release capsule and we have been told now to try it as 3 mg before bed then 6mg if she wakes up; Lol its not working . I feel like i shouldn't keep giving them her as they dont seem to be working. But i do trust Meme's doctor so until next time...............

Hi Donna, Mia is 8 so this as been going on for ever now. They dx her very late and she does have major issues with sleep and possible seizures. I have had the garlic bread fad with mia also.lol I can only hope that it will pass, but somehow i don't feel it will. It's been going on since she could eat.

Hi Mia, has no interest in any foods other then pasta, noodles, chocolate,onions, she does seem to have fads where she wlll eat nothing but noodles for days. I am aware that Mia food issues are more to do with the texture of her foods. I wouldn't have said all children with ASD are pale and gaunt looking. I do feel however that Mia looks the way she does cause she isn't getting the protein she needs hence the hospital appointment. I have started to not give her a choice of what she eats. I still give her , her much loved noodles, but i put a little bit of everything on her plate 1 fish finger some beans one sausage a nugget. Just to see wether or not whe will try any of them. No making much of a issue when she does or doesn't. lou

Hi, i understand what you are saying. Mia never sees or hears any of my worries. Funny you should say about anorexia., my neice has dyspraxia is 16 and has just been dx with anorexia. I will keep a eye out for sure as Mia is very thin, she looks gaunt and very pale. I get tired of people asking me if she is sick. Thanks again i have taken what you said on board.

Hi all thanks so much for all your comments. I havebeen in touch with Mia's doctor. We have shared our concerns regarding her eating habits, her very poor sleep even with the max dose Melotonin 9mg. She is also concerned and has no arrange for Mia to have some more blood tests. Told me in the mean time to get her multi vits. She is going to get her checked out at the local hospital. Regarding her sleep she feels there mabe more going on and is arranging for her to go to the sleep clinic. She has had digital ambukatory done, so not sure if they are going to go down that route again. Keep your fingers crossed. Hoping they finally find out whats going on. Mia's sleep patteren is sooooooo bad i feel like i have 2 babies in the house and not one. I will keep you informed. Thanks again i find your comments very helpful. Lou

Thanks again for all your comments i have taken them all on board. Contacted Mia's doctor who dx her today. Told her that we needed to see her ASAp. We explain about Mia's diet, the "stills" and the melatonin not working. Also the fact every follow up with language and speech so forth, we have had no appointments after 9 months and she wasn't happy. So hopefully we will be in next week getting this sorted out once and for all. Keep your fingers crossed Keep u all updated

Hi , Thanks so much for your comments. I noticed tonight that i'm not sure if it is the texture of the food wiith Mia or the fact everything she eats is the same colour nearly. We have been to the doctor who has recommended a build up drink. Got to give it ago. Trying to explain to Mia, that she should try other things is very difficult as she just doesn't understand. So keep yr fingers crossed that she drinks the build up drinks, least they will give her the nutreints she isn't getting at the moment. Protein is so important and she isn't getting her daily amount. It makes me so sad when i see my other children enjoying the pleasure of different foods.

Hi Suze, no i haven't look into the search engine but will do now. I'm new to the site . Still finding my feet. Thanks Loui

Hi , thanks for your comments. I will certainly try some out. Don't think there is anyway that she will eat meat or fish thou. lol. I just find everything that i offer she turns her nose up at. Mia is 8 now and it's getting worse as she gets older. In fact i think i notice more as she gets older. As she was a late dx (as no one was taking us seriously) I feel that we are so behind on a lot of things. Even thou it's normal for us now. I feel if we had earlier imput that we might be dealing with things like the food issues a lot better. Sometimes i feel i'm letting her down . It was such a battle to get her dx and then when we did they just tossed us into a ocean and left us there to sink or swim. We are swimming but gee it can be so hard sometimes.

Hi All, I was wondering if anyone has difficulty with food . My daughter has ASD and i'm finding that her food intake is very limited. She won't eat meat, fish. Lately she seems to be living off Pasta and Noodles. She has problems with sensitive hearing and pain sensitivity. Has anyone else experienced this??? Any ideas how i can introduce new foods , I've tried making dinner times fun , but Mia won't have it. She says she doesn't like the feel of the food in her mouth. I so worry about her, her ribs and spine is visible but the doctors say she is not to under weight. I feel if i don't get her eating under control then she soon will be. I'm finding things out everyday and since dx myself and my family have been left to our own devices So any help would be gratefully received. Thanks in advance

Hello, My daughter is on 9mg nightly on the slow release capsule. But from what i read in this forum, some people seem to think it's a lot. Suppose it depends on how bad the sleep routine is for how many mg. Hope you get your dosage worked out. good luck

Hi, You can get tax credit increase if you receive the higher rate DLA, i don't think they give it to you if you have the middle or lower rate. I get the higher rate for my daughter and i get a extra in my tax credits. Just give them a bell . GOOD LUCK

Hi , Thanks all for your comments . 9mg is the max dose they can give. Mia's sleep is seriously affected. That is why they gave her the max dose. I think the sleep clinic would be great. Mia has had a 48 hr digital ambulatory but sadly she never had one of her wobbles (that is what she calls them). I think Mia is sleep deprived. Its so hard going. I feel like im banging my head up a wall, We are still waiting for appointments 9 months later. I'm at the end of my rope at the mo. I will see if the gp will send her to the sleep clinic, I know there is one in oxford as she has been there before. When they were checking for the eplispy. Mia's melotonin is a slow release capsule so she has 6 mg then 3mg in the early hours. To hear my 8 year old cry and tell me "i just want to sleep Mommy but i can't " is cutting me up. School is affected. Would you believe today that Mia coming running out telling me she hadn't had any dinner . She didn't hear the class call. I was so angry. The class assistant told me it's Mia's responsibilty to go to dinner and she could have gone to her. I told her that Mia has ASD and needs to be told more then once sometimes. Also to the fact Mia has communication problems and wouldn't go to anyone. GGGRRRRRRR Im off to the headmaster tomorrow . Im struggling to get the school on board. I feel im fighting all the time even thou she has had her dx. Any one got any advice on speaking to the head AGAIN.

Hi yes Melatonin comes in liquid form, tablet form and slow release capsules which work over a longer period of time. Just go to the doctors and tell them you feel the liquid form will be better . It shouldn't be too much of a problem. Good luck Lou

Hi , My duaghter has ASD. One of the major problems is that she just does not sleep. She wakes every morning at 5am and often does not go to sleep till 1am. Half a hour sleep seems to give her 5 hrs of awake time. She has been on Melatonin since February and is on a dose of between 6mg and 9mg . She takes 9mg nightly ahour before she goes to bed. I thought at first it was working but she seems to be awake longer and longer now. I'm wondering if she has become immune to them??? Any ideas. She has been given test on her brain over the last few months for possible seizures they seem to have come out clear so far. I'm now a little worried that Me Me... has been complaining of what she calls the "STILLS" . She says she wakes up and trys to call me but she can't call out and she can't move. She isn't time aware so she isn't sure how long they last . Does anyone have similar experiencs? Any ideas anyone with similar experiences?? Could it be the Melatonin??/ I have made another appointment but would be real grateful for any advice . Thanks in advance Loui

Thanks everyone for a lovely welcome. At least i can say alot of parents in here no how i feel. I find that people are very ignorant of ASD, and other similar conditions. I believe this site will allow me to vent, chat , and hopefully gain some friends that share the same experiences with their children as i do some times it can be quite lonely. Thanks again for the lovely welcome

Hi, I found that with my daughters school too. She has ASD, and they don't seem to be taking this on board. As she isn't one of the more demanding children in the class she seems to get over looked. I have now put in a complaint, have to see where we go from there. Goodluck.

Hi Everyone, My name is Loui, and i am a married mom of four beautiful girls. My third child Mia has been recently dignosed with ASD. It has been a horrendous struggle for us as a family. When we first noticed problems with Mia, we assumed that it was because she had hearing problems. She was operated on when she was 13 months old. It didn't make any difference to Mia she still appeared unresponsive to everything around her. After being referred to a family health centre we were told there was nothing wrong and we shouldn't be trying to label our daughter with the " Autistic" label. The health visitor at this health centre must have taken a dislike to us, as she contacted social services claiming we were trying to label Mia with the Austistic label. this was not true, as i worked full time my daughters were with child care, and it was them who came to myself, sharing there concerns about Mia's "strange behaviour" as they called it. It tool my voice away as a parent i was frightened to take ANY of my children to the doctors. After remarrying and moving home, having full support of my husband we resumed trying to find out why Mia was different. Now age 8 , and becoming harder to deal with, finally we got a answer Mia had ASD. Should i have felt relief ?? i felt nothing but anger that it had taken myself and my family 5 years to get the answers to why my daughter was special. She is now on Melatonin 9 mg to deal with her irregular sleep pattern. Still waiting for language therepy, and all that comes with it 8 months later. Still nothing. We have had no choice but to contact the independant case officer and put in a complaint concerning Mia's non dignosis, The struggle to get her statemented even thou she is coping in primary school. Secondary school is soooo great i fear that if she isn't statemented that she again will get lost in the system. I hope this forum will able me to help others and others to help myself. Thanks for reading our story.