#31
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Hiya Mike, I haven't been using this site for very long but your son sounds just the same as my daughter when she was younger, she's 10 now. Brit has high muscle tone in her legs and low muscle tone in her core/shoulders. Although this is quite mild. She didn't start walking until she was three and a half. Everthing she comes across, she puts into her mouth (even now) An OT assessed her two years ago and suggested she had sensory processing disorders, which explains why she hates being in new places with lots of people. It sends her into meltdown. She has a main diagnosis of cerebral palsy which was diagnosed when she was 4 aswell as global development delay. We have had big problems with eating, when she was younger everything had to be blended and pureed, but she still gagged when she was eating. She had a peg tube fitted as she wasn't getting any nutrition. It has taken a few years but she is now eating normal food, cut up small and using a fork and spoon - though she does make a mess lol she is still doubly incontinent and has a lot of problems with her speech, although she is now putting two-three words together. Her co-ordination problems make it hard for her to use makaton signs ( although she tries really hard) and she can't use pecs symbols because of putting everything in her mouth and her lack of concentration skills. Brit used to take Losec for reflux when she was younger and on tube feeds, but as soon as the tube feeds stopped she was taken off them. She had prob last year with her bowel and was put on omeprazole oral suspension, she has since had an op for her bowel, but is still on the omeprazole, and I can see the dosage going back up as she is complaining of pain in her tum at mealtimes which the consultant think is reflux again, and she still gags on her food even now.

I know it's hard but persevere getting all the help you can. Hope all goes well with the DLA claim, it does bump your tax credits up a fair bit, which eases things financially, and then you or your wife could apply for Carers allowance if you get high rate DLA, not sure how it works for middle rate. See if your GP/health visitor can refer you for a social worker, as with a social worker you should be able to access to extra help, such as respite for a few hours here and there, so you can spend some time with your daughter and recharge the batteries, They also help with playschemes and adaptations you may need around your home. Take Care and Hope all goes well.


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