General Finally back on the Forum..!!

[SusieL66]

(01-08-2012 10:09 PM)Ilovecake Wrote:  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

That must be even more difficult Cat. Crohns Disease and GF/CF. I take my hat off to you - seriously! I'm not sure the tests really tell us the truth are you? me and hubby are definitely strong believers in parents know the child best. I know we need health pros to help and advise us but honestly, sometimes I think they're clutching at straws and think they have to suggest some kind of test for anything they can think of that may be relevant to our children!

Jack's Paed was shocked when we stood our ground and said no to tests - MRI and Coeliac.
But like we told her, we need more info before we say yes. She's a lovely lady but she doesn't live with Jack and really doesn't know him that well.

Re the PECs workshop - 2 days? Ours is just half a day!! I'm not going to learn much am I?? The SENCO and Jack's nursery said she'll help me too so I'm really grateful to her for that.

Take care
Sue x

[Ilovecake]

Hi, I am glad you stood your ground as sometimes I think they forget how distressed our little ones get with anything medical! We also said no to the MRI as we felt we know she has autism and the MRI isn't 100% and also it doesn't offer anything to help my child......would much rather more speech therapy session, OT etc!!

I am sure the half day PECS will be fine especially when you have everybody else on board and hearing the same message etc. We also used PECS to toilet train our little one....we just laminated PECS pics on a strip of card and within a month she was dry all day! Before this and even the day before I thought she might never be dry during the day but it literally happened overnight and maybe the PECS pics just made it easier for her to understand what she was expected to do!! ( 1st- picture of a toilet, 2nd- picture of a child pulling underwear down, 3rd-child sitting on the toilet, 4th- picture of the toilet water yellow, 5th- picture of loo roll) as time went on I did change it slightly to add in wash hands etc! X