reduced tax credits

minx_101

I agree with SuziQ. At the age of 7 or 8 it is highly unlikely that a child can fend for themselves. My point is that nothing has changed in my daughters circumstances from birth to the age she is now, so I can't understand why the rate was reduced to middle. All the same information was supplied on the renewal form for Dla as in previous forms.

minx_101

I would take it to a Tribunal, but i'm not sure if that would help any. The Government is cutting back on everything now and unfortunately it is people with disabilities who are suffering.

DorsetGirl_2

The trouble is the Government has changed in that time and they are being a lot harsher.

I have a friend who's son is 12 and has autism. He is in a special school and uses a wheel chair for much of the time because he finds walking very difficult. He cant do anything for himself and cant even dress himself without help - at 12. Her renewal at the beginning of the year came back and it had been dropped from LRM, HRC to just MRC.

Luckily her appeal came back at LRM HRC, but it can cause so much stress.

DorsetGirl_2

If you think that your daughter is entitled to it and she needs much more help than another child her age then you should take it as far as you can.

Apart from getting her to drink these drinks, what else does she need help with?

minx_101

It is a life long condition. She has to be supervised all the time, food has to carefully measured, and I have to ensure that she eats the correct amount which is very hard. She finds it so hard with the drinks so has to be woken in the night, if she doesent drink them it can be harmful and her health will suffer. She definetly needs more help than a child of her own age who is normal.

nannytone_2

cant the drinks be mixed with something more palatable?
have you told her doctor how much of a struggle it is to make her drink them? having to be woken up and made to drink something she hates in the middle of the night must also surely be harmful to her health.
if the situation is so stressful, have the doctors considered feeding her via an NG tube or a peg?

esmerelda98

nannytone wrote: »

cant the drinks be mixed with something more palatable?
have you told her doctor how much of a struggle it is to make her drink them? having to be woken up and made to drink something she hates in the middle of the night must also surely be harmful to her health.
if the situation is so stressful, have the doctors considered feeding her via an NG tube or a peg?

An NG tube or a PEG for a child who can take food and drink orally? Don't forget these interventions have their own risks, which can be serious, and it seems this girl must take these drinks for the forseeable future.

I'm no DLA expert, but I was thinking only a few days ago about how stressful life would be with a child with PKU, because I would be watching everything they eat, even taking special food to birthday parties etc. How on earth would I be able to let them go off to school, with there always being a risk that they would be offered, and accept some of a classmate's food?

minx_101

We have tried mixing the drinks but they still taste disgusting. Surely an NG tube or peg would be extremely uncomfortable and traumatic for the child and would require even more supervision and monitoring, not to mention changing cleaning etc.

nannytone_2

i know all about the struggles ... my grandson had an NG tube and they wanted him to have a PEG. they said he wasn't able to eat normally and that if we did feed him he would aspirate and end up with pneumonia.
we fought and eventually defied the doctors and fed him orally. within 2 weeks he didn't need the NG tube, and dispite it being a long job, he managed to maintain a healthy weight on his own .. oh, how that little boy loved his grub lol

all i am saying if that the OP's childs condition is so serious thaT SHE NEEDS TO BE WOKEN AT NIGHT AND FORCED TO DRINK SOMETHING SHE OBVIOUSLY HATES ... THEN THE DOCTORS HAVE TO COME UP WITH A DIFFERENT SOLUTION!

sorry, i hit the caps!

esmerelda98

Well, I don't know the condition in question, but if it's anything like PKU, which requires great care to be taken with diet, but otherwise a fairly normal existence, I don't think doctors would intervene like this. It sounds like it is very difficult, but with encouragement/prodding she does the necessary. She's been managing for quite a while now, though things might kick off when she gets to be a teenager. Perhaps if she was refusing point blank it might be a different story.