DLA WAIT TIMES THREAD 46

[Matilde08]

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Thank you 😊

I no its so stressful and yeah this thread has helped me take me mind of things and I enjoy reading other people's experiences and help were I can.. I'm glad everyone is so friendly and understanding.. it's nice to talk to other people who are going through similar to you and your not getting judged.. I probably stick around even after other sons is over with.. hopefully everyone does get good news xx

@Mamof2devils absolutely as someone said we are literally mates that we haven’t met be nice to maybe do a group chat on fb see where are lives are and generally meet each other if everyone is game? We all need the support x

Was itnposted as anonymous? I keep seeing posts like that with the comments turned off and I'm sure it's just people trying to wind people up

@Vic747 Yes it was anonymous.

It'd be a shame if it was a wind up. I just assumed that their child had a severe condition that warranted consideration ASAP.

Who knows?

Really would if people have got nothing better to do, they just are always anonymous woth comments off when I see them

This seems like a silly question to me but it's just something I've been wondering...on one of the Facebook groups they all seem really hyperfocused on melatonin and getting it prescribed, any thoughts on why, I mean they were even talking about buying it online/getting a prescription online.

My son has it and it gets him to sleep but he's soon up, sometimes as soon as 2/3 hours and I'm not sure if it's people don't realise it doesn't make them sleep just settle or if they think it helps with dla as they all fixed on the fact it's classed as a night time need aswell...obviously not important but just something that's been intriguing me whilst I've been waiting and reading

I thought this too. I think it's probably people wanting to say their child has more night time care etc

My son's awake every 30 mins every night. I wouldn't wanna give him something to "force" him to sleep just for a claim. Each to their own I guess!

It's just something that's really baffled me. It took me a good few months before I decided to put him on it, hes 13 and been taking it a year or so, without it he didn't sleep more than 2 hours a night and would go to school and just pass out from exhaustion. Even on it though it takes him about 45 minutes to a hour to settle and then on a good night he's asleep for 4 maybe 5 hours, on a bad night it's less and we have nights when he doesn't settle and all and just has like 15/20 minute naps.

I think you're right though it does come across there's a lot on their that just want it to put onto the claim, one person was so excited they'd got a prescription and asked if they should do a coc and seemed proper pissed off when told it has to be a change for 3 months before they could do it. It's taken us around 18 months to get the dose right for my son and I think at his next camhs appointment they're going to up it as it's slowly stopped working again.

Hi guys congrats to all the awards so happy for you all. Just wondering on average how long everyone's claims are taking? 4 months? Thanks all

I've seen some awarded at 14 weeks, 15 weeks and 17+ weeks so I guess it just depends how quickly the dm is with the pile you're in

Thanks for the reply. Gosh it's madness isn't it! This thread has been a lifesaver for not going mad!

@CyanFawn I know right

I'd love my boy to just sleep with no issues but here we are haha. He's only 2 (3 in Sept) but severely autistic.

I read those FB posts and I think you can tell the ones who are ... let's say... "exaggerating" or "fishing" for things to make their claims seem worse? If that makes sense.

I’m so glad you’ve posted this, my son has a sleep appointment coming up and I was hoping he would get melatonin so he would sleep a lot earlier but I’m beginning to see a lot of people say it doesn’t keep them asleep all night so now I don’t really see the point in him having it, I hope they have something else to suggest 🤞

Just checked my bank and we’ve been paid.. we have been awarded finally 🙏 scan date 26.02

I have melatonin for me, not prescribed cause you can buy it over the counter in most other countries, but I struggle to get to sleep sometimes so I have some around and honestly it makes you feel like you are under water the next day. I get so groggy and cotton headed from it. If it helps kids get off to sleep fantastic bit it does have the down sides to it

We've tried a lot before starting the melatonin, white noise, meditation, baths, just lying there and hoping lol, but it was getting to the point he'd literally just sleep the school day away on a beanbag because he just physically couldn't stay awake anymore.

He takes it a hour before bed and sometimes he's asleep within 45 minutes sometimes the hour and he will get a few hours sleep but not every night it doesn't seem consistent and it's like they grow out of it if you get what I mean, the dose he's on now doesn't seem as effective in getting him to sleep and he's not asleep as long once settled whereas when he first started this higher dose he was quicker to settle.

It's difficult when you don't know what to do, especially around sleep because let's face it we all need it, but when weighing the pros and cons it's like you said is it worth it, because we still have every night where he's up after a few hours

Definitely you can and that riles me up because it's usually these people who get awarded and genuine people need to do a mr and it's annoying that children who need it miss out for longer 😑

I've been eligible to apply probably for around 3 or 4 years but always put it off due to being hesitant of him being awarded, judgment from people, someone who doesn't know your daily struggles looking and making g a decision on how effective you are at writing your child's needs. But it's getting to the point with the constant having to replace clothes, beds ect I needed to and I'm hoping it will help with a lot of sensory resources for his bedroom and communication aids as he has zero empathy and doesn't understand feelings so due to start seeing someone from salt and I've been looking into ways we can communicate as even though he's verbal he's not able to communicate effectively and doesn't understand things like sarcasm so can scream and shout/be aggressive because of a joke

Hi everyone.
Is the scan date the date you requested the forms or the date they received them? I requested mine 18/03/24 and sent off 17/05/24. Wasn’t expecting them to backdate due to it being late however I received a letter 2 weeks later stating they received the forms on 17/03 even though I sent them in may? Does this mean it’ll still be backdated? I then received another letter 2 weeks after that saying it’s still being looked into and then a text today saying the same thing.

Scan date is the day DLA receive your completed forms, you'll get back pay to the date you requested them though if you rang for them

Oh definitely and I don't use Facebook lol

I have been offered melatonin for my boys and I've refused so far as they said its only a quick fix as they get used to it and some people it dont work so just thought what's the point lol.. I'm kind of used to my sleep patterns now it's been 6 year of no sleep little sleep so think you develop a routine lol.. when my boys sleeps at grans once in a very blue moon I think great a brake but I still wake several times in the night and up early.. but if it's helping others it's upto them wish there was a quick fix for sleep I'd be taking it with them lol

I'm not on Facebook as it does my head in but there is people like that everywhere.. i used to live in a street and a woman said to me do you get dla for your boys and I said no not applied yet as I'm not interested about that just want the help they deserve.. she then said if you get the forms I'll fill them in for you I've just got my friend dla for her child and there's nothing wrong with her!! I was furious and walked away.. I reported them for fraud its disgusting how some people go on thinking they can fool the system so they can make a few quid, this was 3 year ago and alot as changed like you said with things you need to replace all the time so I bit the bullet and made claim for my boy he got awarded for 2 year and is up for renewal this September but I only decided to claim for my other son this year as he's going through same path and it's getting more expensive..I think it is a struggle for many with special children and no matter where you go you always get them idiots who think they better than everyone else and try and play the system.. they will get found out in the end no matter how good they get a lying they never going to have a diagnosis to go with the lies so surely after so long dms will think hang on they should have some sort of evidence by now refused.

My child is 2 and, prior to a melatonin prescription, would be awake for 20+ hours at a time having non stop meltdowns because she was so overtired but couldn't fall asleep. Her distress caused my very noise-sensitive older child to have meltdowns too. Once she fell asleep she would wake up at least hourly and take ages to resettle in a state of acute distress. Now we have melatonin she can comfortably fall asleep and get 2-3 consecutive hours which is miles away from where we were. We were absolutely desperate for melatonin to the point where we went private and put it on a credit card. It has absolutely nothing to do with DLA.

I don’t think anybody would give their child medication just for dla 🤔 maybe they genuinely do need it, it’s so easy to assume people are lying but we’re all in the same boat here I just hope people never think of me this way when I describe my struggles?