DLA again! Reapply for HRC

[1980Sport]

Hi - a bit of advice would be much appreciated, sorry it's DLA again.

We get MRC for DS1 (2.6) severe GDD, undergoing genetic testing.

He is a great sleeper, usually 7.30 to 8 but he suffers quite badly with silent reflux/indigestion/wind which can keep him up most of the night. Last year these all nighters were pretty infrequent (once every two month) but since the beginning of this year they've steadily increased in amount and severity (at the worst twice/three times per week). He gets 4 sachets of gaviscon per day and a few months ago we kept a food diary which we thought had helped us pinpoint the culprit. Things settled down but they've begun to get bad again so we went to the GP who has prescribed a medication to try for three weeks, we're two weeks into it and no improvement. GP said to come back and she'd refer us up to the hospital for some more tests, she suggested a hiatus hernia as a possible cause but of course it'll need further investigation.

When he has a bad night he usually wakes at 11/12 and is up until anything between 3-5. He is in agony, arching his back and stiffening. The only relief seems to be carrying him round and round and rubbing his back and tummy until we can shift it.

Anyway, we recently got our DLA letter in to say MRC will continue until 2012 without review but I was wondering if I should consider applying for HRC. I'm not sure his night time needs are enough to qualify and obviously we hope in the long term that we'll be able to sort out the problem and he'll go back to sleeping well. Is it worth it?

TIA

how old is your dc , the older they get the more there needs diffrer from children the same age the more likley you are to get a higher rate xxx

He's only 2.6, I don't really think I should bother. I know many who have toddlers who aren't great sleepers so I should be thankful for the fact he does sleep well on good nights. Unfortunately, the bad nights seem to be increasing in number but it's hard to say because he'll have a week of being fine then a few weeks of torture and so on :(

Thanks for replying.

i get dla for my asd and my dd gets it for her sn. unless your dc condition changes i personaly would wait until 2012 when dc will be that bit older and you may have gatherd more evidence etc. i have found if you get a decent rate its best not to rock the boat as a reassesment of dla can go down as well as up . it must be hard when yor dc dosent sleep , keep a diary for 2012. also have you claimed carers allowance and if you get tax credits the family fund is a wounderfull grant making charity that may be able to help . also when dc is 5 (or 3 depending on rate) you may also get dla moblity allowance . hope this helps xxxxxxxxxxxxxxxxxxxxxxx i feel for you my dd is 15 and sometimes i have to sil with her at night , my asd makes it hard to sleep also xxx

also i have quite a few friends with asd kids they started off when at pre school getting middle rate as they got into teens they have all been moved to high rate xxxxxxxxxxxxxxxxxxxxx

Thanks Hannahsmummsy. Fortunately my DH and I have a fairly good income so we don't qualify for a lot of benefits and DS is too young for mobility but we recently received a Cerebra grant which will allow us to purchase a specialised trike so that is great. Keeping a sleep diary is a great idea and I will do that - but you are probably right no point applying, then getting the problem sorted out quickly (which we hope will happen) and then having to ask them to stop the payments again.

Thanks for the info - you sound like you have your hands full as it is x

well done for getting grant . even if you have a good income it still is very hard to meet the costs of sn child xxxx

if you work less than 16 hrs you may still get carers allowance , possibly regardless of dh income (not sure but worth checing out )

I'll look into it as we've been unable to find a nursery willing to take DS so I'll be going back to work on reduced hours.

Yes, the SN shopping list is endless! Although we have a good income we're by no means well off :) The trike was definitely not affordable so we're well pleased!