DLA - Appointed Person Letter (and a mini happy ramble!).

[FlyingFig]

I applied for DLA for DS at the beginning of December and received a letter on the 19th December informing me that they would be looking at my claim. I received another letter today saying that I have been appointed to manage DS's DLA claim, followed by my key responsibilities as his appointed person (which all makes sense given that he's a child).

Is this a bog standard letter or is it an indication that I'll hear shortly if they've made a decision either way?

Also wanted to say that DS started a daily physio routine four weeks ago (Dyspraxia, generalised low muscle tone, hypermobility syndrome and possible ASD among other things) and I'm delighted to say in a short space of time he's made improvements and seems less uncordinated and a bit stronger whilst doing the physio (albeit small improvements but any positives are a welcome relief!).

His skinny little thighs have an almost 'toned' look to them and his head looks less like a lolly pop now that his shoulders and neck look a bit sturdier . Because of his like of routine and rules, it's not been as hard as I thought it would be in order to get him to participate, as even though it hurts, as it's now part of his daily routine and he knows off by heart what to do and when (and woe betide anyone that accidentally leaves a section out or muddles the order up Just rambling now but wanted to share our good news, as I'm sure you know how much even the smallest things can matter!

.

I've been watching this thread with interest, we applied 23rd November and had that letter before Christmas sometime. Still awaiting any further news,
Marie x

we got the letter, but not dla (now appealing).

I got that letter and got the letter confirming DLA award shortly after. Was a bit concerned when they 'phoned to see if ds had a dx (he hasn't) and thought they would turn it down after that but so glad they didn't. Good luck!

I recently got that letter and very soon after received notification of our entitlement to the mid-rate DLA.

Great news that your DS's making so much progress. I was interested to hear of his situation, as DD (2.4) also has low muscle tone, and has been receiving physio since she was a few months old. She still isn't walking, can't crawl, but bottom shuffles everywhere. We've been told she'll get there eventually with the walking (TBH doesn't look likely within the next year or so). Her learning appears to be absolutely fine, albeit she's a little behind with speech and language as she had a late diagnosis (8 months old) of hypothyroidism, so has been catching up since she went on her medication.

Can I ask how old your DS is, and where he's up to physically? I know I shouldn't compare as now two children are the same, but it would be interesting to know...

Hi Razamataz

DS is 6 and was only diagnosed with the low muscle tone etc before Christmas. He was late reaching all his milestones, sat unaided at 10 months (but still flopped over, was about a year before he could sit totally unaided), didn't crawl at all (dragged himself all over using his arms only, a bit like a slug and didn't pull up to stand until he was a year old. His walking took off between 15-18 months, but he almost ran everywhere, no real control over it, I suppose.

I raised concerns at 10 months when I noticed he was so floppy and in particular wouldn't/couldn't weight bear through his legs but as DS had other unrelated health problems at the time, the delay it was put down to this (plus I kept hearing the age old 'he's a boy, he'll catch up'.

Now he's older he runs OK but his legs flick out all over the place and there's not much control in his movements. His walking is quite unusual as he'll break out into skips and kick one leg forward but I think this is more related to his dyspraxia? However he gets around OK and is totally unaware that he has his own unique way of getting from A to B .

His fine motor skills are affected as he has weak hand muscles so struggles with writing, using scissors, cutlery, dressing etc but we're confident that once we get his core stability strengthened, he'll make advances with the fine motor skills (that's what the physio and OT say, so hopefully they're right!). Plus with the dyspraxia and hypermobility it's hard to pin point the exact causes for his issues as it seems to be a mish mash of them all together.

If you can think of anything specific you want to ask, as opposed to my random witterings, fire away

I hope your DD makes progress and that the walking isn't far away, I expect you have to do a lot of physio with her?

Reading that back, I should point out that you can't really tell DS has a funny walk/run when he's in the playground, apart from his gait looking a bit odd. The smaller things like the leg flicks are probably only noticeable to the trained eye

Thanks for the background. It's reassuring to hear from someone else with a similar experience. I find it quite draining sometimes having to explain DD's condition to people - especially as there's no diagnosis, or 'name' for her issues.

DD has physio once a month usually but she's starting a weekly group session this Friday, which should hopefully help. Although she's making good progress, if I'm honest she's due a development spurt.

I can't wait for the day she takes her first proper steps (not least because my and DH's arms won't be able to take the weight of carrying her for much longer!). We have a 10 week old DS who doesn't appear to have any of the issues DD has, thankfully. Dealing with a non-walking 2 yr old and a newborn presents its own set of problems!

Fingers crossed my DD makes similar progress as your DS.

Hope the added input of the weekly sessions helps your DD progress. DS is on a daily routine that takes about 20 minutes with an added 10 minutes of games such as throwing and catching. The physio said that as his natural muscle state is weak, if we stop the physio or miss days out, his body will quickly revert back where we started, so we've accepted this is a lifestyle change and something that is going to be an important part of DS's life.

I guess the late diagnosis of your DD's hypothyroidism added to the delay, although DS's medical problems weren't connected directly (GERD) he had surgery at 2 years old to alleviate the condition and has had 5 GA's so far in his life and I'm convinced it all hindered his development, even if it wasn't a direct cause.

Wishing you and you DD lots of luck.

Just to update: We got a letter today telling us DS has been awarded DLA today; can't believe it really, was expecting a huge fight.