Loui
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Posts posted by Loui
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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.
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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.
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hi louireece has lots of problems with food too he eats weetabix 4 breakfast (wen he eats breakfast!!) and chocolate spread and crisp sarine together!!
for dinner and tea have been to a diatician but they r not worried as weight is ok...
i have been asked to vary the choc spread he has sometimes he wont eat it if i change it..
have given up worrying about his poor diet they have taken bloods to see if he is laking in anything and they all came back ok... i dont know how!!!!
we just hope he will get bored in the end but this fad has gone on for months before that it was garlic bread for brakfast dinner and tea!!!!
goodluck...
how old is mia??
love donnaxxxx
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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
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I was not trying to imply that your daughter will become anorexic more that sometimes our fears about their food intake can actually tip the scales in that direction. I know an autistic woman, who herself battled anorexia in her teens and who has since done some research on this issue, and she says the fact that her family were so worried about what she was eating applied even greater pressure to her and made food and even bigger focal point in her life.Food is 'not' and issue with our youngest at all. He just has no interest in food. I have decided that I will not make it an issue. He to is very pale with dark circles around his eyes and every doctor we see comments on his paleness. I find myself saying yes but he is always this pale. Paleness and autism again go hand in hand and is usually down to a food intolerance. It is often an intolerance to a food that the child will eat making it doubly difficult to sort out. My son also suffers from cyclical vomiting syndome and we have on many ocassions ended up in A&E because of this as he will neither eat nor drink when he has this syndrome. It can last for many days. Once Christmas he went the whole of the holidays on one bourbon biscuit and half a packet of crisps. I was out of my mind with worry and so were the medics but they could not pin point where the problem was or is. And again this is autism. Many people go into the biomedical side to find answers. We have tried this but got no conclusive answers. I even have Paul Shattock in my patch and once carried my son into his office to see if he could shine any lights - it can be a bit like looking for a needle in a haystck.
I decided that if my son was otherwise fit and healthy that I would not make food an issue unless I have to. He will drink milky tea with sugar and so I let him do this because we then cover milk and sugar (which must give him the energy that he has bags of)
Cat
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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.
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I have food issues and sleep issue with both of my sons. Both have a restricted diet and while one eats for england the other could quite happily live without food altogether - except we all know that he could not live.Food issues are very common for anyone with an ASD and more so in girls. A word of warning here because there are a high percentage of anorexic and bulimic young women who are also autistic. Obsessions and phobias are all part and parcel of autism and if food becomes the focal point of an obsession it can really get out of hand quickly. I am not suggesting that you sit back and do nothing but be careful not to let your daughter see your level of anxiety here because she could well feed on that.
I really do know about lack of eating as my youngest sometimes does not eat for an entire day. He does this because there are other things that are occupying his mind on those days and food simply does not register on his radar. I cook the food, give him the food and he ignores it. He tends not to like cooked food at all and would happily live on raw carrot, crisps and apple.
We lost a lot of time with our middle son who was 13 when he got his dx and I did spend time thinking 'if only' but then I realised that by doing that I was waisting even more time. I don;t think that the food issues would have been any different to be honest with you - well not with my son. Our youngest was diagnosed when he was 3 and so we did have the awareness and understanding with him and yet he is the little chap who eats the least and has the most issues. It's learning to accept that what is the norm in an NT child is not the norm in and ASD child and having one who rarely sleep before 7am and only then has a three or four hours sleep, I have given up on that to and now go with the autistic flow.
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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
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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
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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.
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Hi Loui..............have you tried looking in the search engine on the forum??............this subject has been talked about loads of times on the site.You may find some ideas there , hugs suzexHi 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
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does your child like soup? i know that son lived on soup.. so it was easy to blend up things and mix in with the soup as the taste is diguised. i found that the ''thought'' of eating certain things just put him off.. so less he knew the better. as long as the soup wasnt green then i could get away with many veggies in it.
also i added lentils which have alot of protein in them..have a bland taste so not easy to detect. my boy is a carb-oholic and loves pasta. but he will now eat with sauce on it. in the sauce i blend up boiled courgette (but have to peel otherwise green skin gives it away) and ''red'' veggies.
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Hi , Thanks for your comment. Mia does eat soup, She went mad on it for a while where it was alll she would eat. She has gone off it now.lol I think i will try and but some chick peas and so forth in some soup. Anything is worth a whirl.
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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.
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Hi Loui, I know exactly how you feel. We went through all of that with C. Up untill about 2 years ago he could go all day on half a bowl of frosties or a packet of crisps. He was 3 stone from age 3 until age 7. He was a very big toddler but became the smallest in his class. He also came down with every cold and bug that was going around. He was under-weight and his face looked gaunt.Nowadays... well, we have the opposite problem: how to stop C eating constantly. His food intake is still very limited but it's a lot better than it once was. Like Mia, C has real issues with texture. What I did was cater to the textures he craves. He is a carbs-aholic and loves salty things and spices - so I would add some beef or chicken stock to his noodles or pasta, he liked the flavour and was still getting some of the goodness from the meat. He also dips his bread into a bowl of gravy (he doesn't take butter and he won't eat sandwiches).
We also discovered small portions were far preferable and here's the mad bit - line the food up along the plate - that way you can set a goal to eat from left to right and once she gets to a certain point she can stop. C discovered this himself.
My mum also discovered that if C wasn't restricted to staying at the table he would eat more - he could distract himself from the chore of eating by wandering off with every mouthful. And although it went against the grain with me - I let him eat infront of the TV - he doesn't even notice he's eating sometimes.
Cereal is great. C doesn't eat any dairy but he eats dry cereal as an alternative to crisps, and all the good brands have loads of added vits and minerals. C sees a dietician due to his limited diet and she recently recommended calcium fortified drinks - flavoured mineral waters that have the equivalent of about a pint of milk.
Also, you can gets loads of goodness into them with fruit juice. C won't eat any fruit or veg but he will drink apple juice. I buy 12 big cartons of it a week!
Peanuts are a good alternative to crisps (so long as there's no allergy and she's old enough) as they contain protein.
Since we made all these changes, C is far stronger and healthier and he now weighs about 4 1/2 stone.
I hope some of these tips help.... they have come from years of trying to find what works.
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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
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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
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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
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HiWhen medication is involved and given the 'stills', I'd be insisting an urgent appointment/medical advice over the phone. 9mg sounds a lot particularly since she's been on it a relatively short time.
Caroline.
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.
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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
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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
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Big welcome to you 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
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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.
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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.
Melatonin (worried mom)
in Medication
Posted · Report reply
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...............