ksasnic

I know you can get it from the supermarket aisle and I have been on top of his prescription. I just wanted to make aware to those who might get it via a prescription that the NHS are planning to cut this. In a time where finances are tight its a nightmare. Overpriced food from the supermarket really cuts into your budget.

Just wanted to say that if your child gets a prescription for gf foods be warned many pct trusts are now following a flippin gov't guideline of either reducing or cutting their rights to have this on prescription. Its another bloomin austerity cut and they don't really care who it affects. I ordered my sons gf prescription, his fresubin and his vit d supplements that he has on a repeat only to find that half his gf prescription has been cut in half. Its gutting as I was not told at all that this was going to happen. Maybe the thought of paying out over £7 for a pack of 4 fresubin's and he has to have 1 a day was too much so they thought to cut his gf prescription part to make up for it. I am just so annoyed as when we went for the review a month back I thought because it was so expensive I would remove a couple of gf items myself from the prescription. If I had known they were going to take away half the prescription along with it I would have said stuff you then! I am just so peed off with it all. Its just a constant battle, never ending. He was prescribed these items by the consultant, a paediatrician, the dietician and finally the dr so it wasn't on a flippin whim but after careful consideration and now all of a sudden he can only have half???? I am wondering when they will be taking it all away from him! Its not fair on him. He is in final exam year and to take him off the diet will really put the spanner in the works as far as his concentration goes. He also suffers from inattentive attention deficit disorder and dyslexia with his autism. But it seems they have targets and they are far more important than the child. I am now concerned as because he is on a special diet if they stop the prescription will the gov't then say he doesn't have the prescription and therfore not a proper coeliac dx then his dla will be cut also. It may seem a bit far fetched to assume this but the way this gov't is going we are not going to have any NHS system and no welfare system either. Sorry rant over.

Hi I recently had to fill in a dla renewal form for my son he is 14 and I note his claim has been renewed for 4 years so he will be 18 when he needs to renew again. So will I get this letter near his 16 birthday or ? am a bit confused. I do know one thing though my son is not good at all with cash I can see him just opening up the argos catalogue and him spending it all in there. I know I will have to deal with his money and his bills when he is old enough. So how do we go about that?

If you join coeliacs uk site you get sent out a food directory with updates online. This book is great as you just look up and check on whatever you need to. most of the top food shops like asda tesco etc are listed in the book as well.

I know that when my sons school complained he was starting to be nuts again and we found out he had sneaked a rocky bar or other snack he shouldn't have. In reply to one month ago and during the first week his behaviour at school was relly good (I hoped that it was because the diet) but after that things went back as usual although he is still on GF diet.

It all comes down to the F word! Funding! My boy had an appointment at cahms and well it was rubbish. He spent 5 mins at the very beginning with the clinical psychologist who was more aspie and ocd than my boy! he then sent my son to a nurse to colour in pictures????? And I was left to answer questions he had on his sheet and to be honest a lot of the questions couldn't warrant a straight yes or no answer so he was useless. After meeting for the outcome I was told he didn't have Aspergers or anything along the lines. I was dumbfounded. I told them that my son deserves a chance and all the help he could get and they were selling him short just because of money. I had backing of Autism outreach, speech and language, ed psych, community paediatrician all supporting me and my son. I asked for a second opinion out of the county. I was given another appointment with the same man who did the first one!! I declined and said nope I want a proper consultant ie someone who knew what they were talking about. I had to wait for funding from the pct which was a right pain as they tried to keep losing his referral in the end we got an appointment with Anne Le Coutier up in Newcastle and what a difference that made. They sent several people down to see him at his school and at home before the main appointment. We went up and spent all day being assessed very rigourously by several other bods and then the indepth report came a month later saying he did have it so I am very glad I fought for it. I know we have been very lucky. Keep fighting and good luck.

can you up the dosage of melatonin? my boys on 3ml which is perfect for him.

Blimey, My boy gets constipated quite regularly but since being on a gluten free diet he is much better. I'm just wondering whether he should be on the casein free one as well..... They did mention it but focused mainly on the gluten free aspect. Must admit trying to get veges down him is a battle so thought thats prob why he's constipated more so. Think I will have to do more research. Arghhhh

You could still apply in your name and then when going with a friend they would get in free.

Thanks for that.. I got bogged down in the dx as thats personal to me and lost the reason for the form. I suppose I am just trying to make sure that they know everything so hopefully they will continue with the DLA. I know its not just about the money but without it a load of activities which he does now would have to be curbed. That then would mean an even more bored child and a more depressed me. Followed by what to feed him as his gf foods are not cheap! Back to it I must finish it off and put it behind me for now. Thanks

I am ARGHHHHHHHH at the moment and sooo stressed about it I have put it off for ages and now its getting urgent. Due to end in March so I must get my skates on and after I have filled it in I have to take it to the consultant so he can fill his bit in then they said they would send it off for me. I don't know what it is but I have done the hard part of writing out in rough how it all affects him taken in part from an old copy of my last renewals form but I now have to copy it over and those boxes are just so darn small its bugging the aspie in me! But I suppose its because this year there seems to be more added to the list and it thoroughly upsets me. Last time he was awaiting second opinion dx for Aspergers and had speecha and language and social communication problems and the innattentive attention deficit disorder with a fair bit of hyperactivity included. Now he has his dx and as he was such a complex case that they couldn't say for sure what it was as he had. They explained it to me as on the scale we have aspergers then we have something in the middle then we have full autism and my son is short of full autism but further along than aspergers so he is in the middle as undefined ASD Which has confused me somewhat, I keep flitting towards they are copping out a bit to blimey son why so complex. So there is that now to be added to the form, then as he had sleep difficulties he is now on Melatonin (total godsend and highly recommended!) he is on the gluten free diet due to an intolerance that basically made him hyper and completely out of sorts as well as stomach upsets, bad constipation etc, add to that dyslexia and well shall we say everytime we go to see his consultant at the ADHD clinic when they print out the letter it varies every time, sometimes they miss off some of his problems at others add more so, well I am exhausted trying to find information to help explain these types of problems but then when I do find information it is all hit and miss as of course my boy apparently is complex and doesnt fit it all fully! I am still getting over the findings that he is borderline learning difficulties.. I am so worried that they will stop it and say he doesn't qualify or drop it down as shall we say life without it will just add so much more stress onto me and I am already struggling as a single parent who already suffers from anxiety problems. Sorry to moan on just feeling very isolated. I havn't had a break away from him in over 2 years and that was for a weekend, yes granted I get time off when he's at school but as we all know its not total time off. I love him to bits but boy is he draining! Ho hum onwards as they say.... ever onwards!!!

When my boy was younger he desperately wanted to go to the cinema but it was way to loud for him, he would often sit there transfixed with what was showing but with his hands over his ears a lot of the time. We persevered and now he's nearly 14 we go every week sometimes we see 2-3 films back to back and repeated. (Not recommended - Alvin and the chipmunks the sqeakwell- I don't have hearing issues but boy did I want to lop of their vocal chords!) It does get pretty tiring seeing so many and often repeated films, we saw Harry Potter and the Half Blood Prince I don't know how many times! It used to be very expensive taking us both but we found out about the CEA card which means the carer gets in free and you just pay for the childs ticket.. A god send.. This used to be £5 for 3 years but I think its just changed now to £5.50 per year. http://www.ceacard.co.uk/ Then for his last birthday his main present was a Cineworld Unlimited card subscription for £11.99 a month (think they have just upped this now to £13.50) but still so much cheaper than paying his ticket every time so now we both get in without having to pay anything on the day. I found that perseverance helped here. He soon got used to it but on the down side I think he has got used to it so much as he will have things quite loud now and not notice it

My boy has been on the GF diet for a while now and wow the differences were amazing it was like one week he was hell child spawn of satan and the next calm and happy. He gets a GF prescription and through the dietician she told me about http://www.coeliac.org.uk/ and I got one of their directories which gave a list of most of the GF foods from various supermarkets and it was amazing. I still have difficulty with the codex part of it as apparently some wheat is allowed but its got to be in the codex allowance which does make things slightly confusing.

What Sooze !!! Oh my god - Noooooooooooo. I have not been told this at all. I will defo be asking his consultant next time I see him.. Am off to research this a bit more...

Yes it is available in the UK but I was told that because its red listed or ? it means that only a consultant or hospital dr can prescribe it. My sons normal gp can't. Must admit it works ok for my son without a break.. Having said that during the school holidays he does miss the odd night. I will ask the consultant at his next appointment.

Sooze, do they need a break from it ? my sons consultant havn't told me about a break. How often do they need a break ?

My son's on melatonin also and its been a godsend.. Good luck with what you choose.

Big super duper <'> you both have done soooo well to get this far.. so now sit back and take things easy while you adjust. I must admit it took me a while to actually accept the fact that my boy was now sleeping at night courtesy of melatonin.. Before that he was up and down, couldn't/wouldn't sleep. I felt like a human yoyo dealing with him and being there with him until he dozed off only for him to wake the second I snuck out... small potatoes in comparisson to you but to just sit down at 7.30 and know that the evening was all mine was a wonderful liberating feeling.. I hope all goes well and that you aren't finding relaxing tooo hard !!

Well it seems as if my council just doesn't have a clue. They are so rigid in their refusals and acceptances.. my son gets middle rate care and low rate mobility and now I await a form.. and will go from there - I wish I still had the social worker now but we gave her up when she couldn't offer us any real help.. Having said that I still might phone her up and ask her if she would write a letter. Its flaming mad how if you were to ask different councils what their policies on the blue badge scheme is you will find that they each interpret it differently.. I wonder if my council is Aspie !!! cos it seems to follow it by the letter. Well we can but try.. and then fight and fight some more.. heres hoping I do not fight much. my son gets a taxi to school courtesy of his statement cos he can't use the buses well not 3 as he would have to. So maybe this will help add extra clout.

http://www.dft.gov.uk/transportforyou/acce...uebadgeelightml found this whilst trawling.. there is a bit about the blue badge and autism and how helpful it would be if there were certain changes made to eligibility of it.. Am off to phone my coulncil just to see if they have had that confounded directory yet from last Serptember !!! lol and they said they would put my son on a list and inform us what happens... yup reckon that list was well and truly filed !!!! gr