General Finally back on the Forum..!!

[SusieL66]

Hi. I haven't been on this forum for months (had a brief look on NYE whilst trying out my laptop). Don't know where the time has gone and have missed reading all the posts. It's like leaving your family and going away for while!!

Since the last time I was on here, Jack has made great progress since we put him on a gluten free diet - his speech is improving and he is so much happier and willing to try doing new things now. His Paed, however, was fuming when we told her what we'd done - because we hadn't asked her permission apparently. We had to remind her that we asked time and time again if there was anything we could do to help help Jack that didn't involve giving him medication. Told her that we'd done our research and reading about the diet and also seen a dietician to make sure we were doing the right thing and the proof was really in seeing how Jack has changed! Obviously still angry with us and because she's harbouring a grudge at us refusing the MRI scan (because she couldn't give a good enough reason for Jack to have it) she has now referred Jack to a Neurologist - appt is 31 Jan!! We look forward to that.

I've been doing the Earlybird Course which has been interesting and am going to a PECS workshop on 17th Jan - Jury is still out here as to whether or not it's the right thing to do with Jack - time will tell tho. Has anyone else done the PECs workshop - is it worth it and does PECs really work? Would love to hear what you think.

Thanks for reading.
Sue x

[Ilovecake]

Hi, nice to see you back Sue.

I did the PECS workshop about 3 yrs ago and found it brilliant. It suited my little girl perfect who had no speech at the time! Within a week of using PECS we had 30+ words and now fluent in English and welsh.....we are still working on the understanding as she takes things so literal etc but doing well! it does take a bit of time to set up the pictures etc at the start and to get them using it daily but well worth all the effort! The later stages helps them talk in sentences etc! I bought a picture disk on eBay and printed the pics from there! Please feel free to ask any questions about PECS.

I am so glad you are finding the gluten free diet helping and seeing a big change in Jack! We also saw a big change when we changed our daughters diet.......one of the best things we did. Have you been given the products on prescription? We tried but failed, the paed was having none of it!!!!:-( speak soon

[Lucy]

Glad to see you back and that things are improving have heard lots of people had success with pecs, goodluckat the workshop. Will be interested to see how it goes x x

[SusieL66]

(01-07-2012 06:16 PM)Ilovecake Wrote:  Hi, nice to see you back Sue.

I did the PECS workshop about 3 yrs ago and found it brilliant. It suited my little girl perfect who had no speech at the time! Within a week of using PECS we had 30+ words and now fluent in English and welsh.....we are still working on the understanding as she takes things so literal etc but doing well! it does take a bit of time to set up the pictures etc at the start and to get them using it daily but well worth all the effort! The later stages helps them talk in sentences etc! I bought a picture disk on eBay and printed the pics from there! Please feel free to ask any questions about PECS.

I am so glad you are finding the gluten free diet helping and seeing a big change in Jack! We also saw a big change when we changed our daughters diet.......one of the best things we did. Have you been given the products on prescription? We tried but failed, the paed was having none of it!!!!:-( speak soon

Hi, thanks it's nice to be back! that's really encouraging about the PECs workshop. We want to do everything we can to help Jack so I think I should really put extra effort into this one.

We don't get any of Jack's food on prescription (and it's not cheap is it?). The Paed wanted to test Jack for Coeliac (sp!) Disease which meant giving him gluten laden foods for at least 6 weeks and putting him in pain and misery, so we refused! She told us it's the only way we could get help with paying for 'special' food for Jack, so we told her we'd manage without the help thanks. When he's older and better able to understand his condition then we'll consider it again then and include him in the choice. I've got some great recipe books for gluten and casein free cooking but have found it fairly easy to adapt family meals for Jack. He certainly eats more now than he did before the diet. I'll let you know how the workshop goes. Thanks again. x

[Ilovecake]

I know what you mean about the cost, I obviously don't mind paying but a little help would go a long way!! Our little girl has been tested for coeliac but it came back fine- she just had a blood test while still on GF/CF diet, that was with our GP! She also had blood tests for food allergies and that came back fine!! I know 100% that she isn't able to tolerate certain foods hence GF/CF diet!!!! I will speak to the
Pead when we see her to see if she has actually been tested properly then, but I would be like you there is no way I would bring her off this diet if that what it takes to test her properly! She also has Crohns Disease so we have to be very careful with her diet.

I do hope you enjoy the workshop, I found it a lot to take in over 2 days but I did travel 4 hours daily there and back, if I had the time back again I would have booked into the hotel and taken some time in the night to read over etc. Speak soon, Cat
(This post was last modified: 01-08-2012 10:15 PM by Ilovecake.)