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About ksasnic

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    North Yorkshire
  1. 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.
  2. 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.
  3. part 2/ you can get extra help there as well so financially it can pay to get dx. On top of that it means if in a job they have to take more care of you. I know this for many is a somewhat of a taboo subject but it can help you not worry about things so much and you can put it towards a holiday for your family where you can really get away from it all. I wish you well in your choice :)

  4. Hi, Well its a toughee decision I definately think I am a little on the spectrum myself lol but as you say as an adult the label could be more of a problem. But if you do go for it there are some benefits of having the 'label' you could claim dla and then in turn it gives you extra payments on working tax as you will get a diabilitied element so more dosh. If your claiming housing benef...

  5. ...prt 2, a diagnosis that gaining. Considering I'm an adult now and have two children, if I'd been diagnosed as a child it would have made a dramatic impact on my life I feel, but now I'm not sure how much help it will be. I think it would be helpful for my parents/husband to learn a bit more about it though which may help them understand me better. Thank you for your response...

  6. Thanks for that! I'm still looking at the moment but actually the national autistic society sent me a really extensive email with lots of information and suggestions of people I could contact, it took about a month for them to respond but I was happy they did. Am now thinking I may not even go for a diagnosis, I'm not sure but I'm worried about a label being put on me and me l...

  7. part 3/ and follow ups with them and he was giving his dx. If you are unhappy with your assessment then defo ask for a second opinion and make sure its longer than an hour. No-one can ever make a dx in that time unless its soooo obvious there are probs. Simon Eltringham was the castleford psychologist that got it soooo wrong for us. Good luck with your quest. Apologies if this is soooo late lol

  8. Part 2/ or no answers and then it came to funding. We went back and was told my son didn't have anything wrong. I asked for a second opinion out of county and they suggested the same useless bloke. We fought for funding and got an appointment with Anne Le Couteur in Newcastle. My word a big difference. They sent people to my sons school and another day at our home then we had a full day wit...

  9. Hi you wanted a list or somewhere in west yorkshire I think. Well my son was sent to Castleford and Normanton hospital for dx. It was a disaster! We were given an hour and my son was only with the main psychologist for 5 mins before he went of with a nurse and just did some drawing while I was with the psychologist. He, I would say was more aspie than my son. he went down a checklist wantin...

  10. 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?
  11. 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.
  12. 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.
  13. 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.
  14. can you up the dosage of melatonin? my boys on 3ml which is perfect for him.
  15. 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
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