DLA WAIT TIME THREAD 41

[Fee89]

Chat and wait 🌸

There has been a lot of awards on Facebook today dating middle of January so fingers crossed for everyone waiting🤞🏼🫶🏼

What’s the latest date you’ve seen hun? X

To be honest I saw someone from the 11th/12th but then someone also the 22nd so we’ll see x

I’m 26/01. Missed a call today at 1:45, can’t call back cos of phone lines down. Anxiety at an all time high! X

I’m 19/01, hopefully not too long for us! But ooo no that must be awful, hopefully they can ring you back, if not keep yourself busy until 9am tomorrow! I know people get calls to ask a few questions so hopefully it’s just that, keep us updated x

Sorry, latest that’s quite common is the 16/01 just checked x

I think i am going to call again tomorrow and ask if it can be escalated due to financial hardship.
For context my daughter is diagnosed ASD but as a by product of this she doesn’t eat a varied diet and is constantly stressed which causes her chronic constipation.
The current bout we are in is pretty bad. She literally hasn’t been the toilet properly for 6 weeks and I’m not a million miles from taking her to the hospital as I’m so worried.
She is on 4 lots of medication per day but even that doesn’t help. She’s has bowel incontinence then because the ‘fresher’ stuff seeps around the blockage. We are getting through 4 packs of pants at least per week as she soils them so badly they’re not even worth trying to save. She also wears pull ups at night where we get through at least 2 or 3 per night because she refuses to keep them on as ‘they’re for babies’. This means we are up at least twice in the night stripping her bed and cleaning her as she soils and wets her bed. We have had to buy extra bed sheets, duvets and now she needs another new mattress after the last few weeks due to how bad this current blockage is.
Its costing us a fortune and it’s not sustainable.
I have another doctors appointment on Friday as she has low iron due to her diet but iron supplements also cause constipation so it’s just a horrible cycle. It’s so stressful and worrying and that on top of the financial aspect is just too much to be honest x

OMG!!!! you are first person i have seen that has spoken about this. My eldest was on 12 packs of movicol a day!!!! She was in pull ups until she turned 13. I flipped as i knew she was not constipated like they said. They wanted to prove me wrong because i 'know nothing'. So the consultant gave me these magnetic balls to put in a yogurt and get her to swollow them. The idea is that 5 days after you have an xray and these balls still show on xray as shes that blocked up. Well we went for xray and there was not 1 magnetic ball. I spoke to camhs asd who told me its pretty normal for children to wet and soil themself and they grow out off it. She did but she now has weak bladder where she can barley feel if its full. What we done was mattress protector, shower curtain, sheet, shower curtain then sheet on her bed. So at night we would whip one sheet and shower curtain off and there would be another layer already there xx

@Fee89 so was she never constipated but they kept giving her laxatives? That’s crazy.

My DD is definitely constipated. I have to keep track of her toileting to manage her medication and other than the stuff seeping and a few ‘rabbit droppings’ she hasn’t been the toilet since March. She probably sits on the toilet about 4 times per hour but just can’t go and I think the stress of that just makes everything worse.

I will definitely try the sheet and shower curtain trick as I can’t keep up with the washing. No matter what I say she will not keep a pull up on at all. She’s nearly 9 so she’s gets really upset about wearing them and sneaks it off at the first chance she gets.

I’m so worried it’s going to cause her long term damage though as having poo that old blocked in your body for so long can’t be healthy at all. It took me years for the doctors to even agree to look into it as all they kept doing was fobbing me off with more and more medication. It was only recently they sent her for blood tests and they found out she had really low iron x

Sorry if this has already been discussed. Back pay was paid yesterday. Received letter today, but I’m unsure when DLA gets paid is it weekly or monthly and does it go by what date you got back pay? Thanks in advance

Its paid every 4 weeks. I believe its from the date of the backpay but someone may correct me on that

Yeah, i got spoken to the utter shit by the consultant. Tried telling me i knew nothing about constipation. The next visit i turned up in my work uniform and she changed the way she spoke to me and agreed to send her for xrays with them magnets.
Its fear off it hurting her. But movicol is vile and i dont blame them for not wanting to drink it. We tried the stool at the feet, sitting down standing up, warm bath then on toilet. And she kept saying she will poo on her own time not when we demand her to do it 😂. Our washing was shocking and i would have to check her room daily as she would hide clothes x

When you feel like giving up because your so tired look at yourself in the mirror and give yourself credit

Up all night because your child doesn't sleep yet some how we find ways to carry on

Wiping those tear stung eyes because your tired but your child needs you to be their voice no matter how tired you are the strength comes from us knowing our children deserve to be heard.

Keep fighting for what you know your child deserves

I've felt like this and it's a lonely time at times as some people don't understand or believe you.

Still on going for diagnosis
But I received a txt this evening saying my child qualifies for DLA
Scan date 17/01

Congratulations on your award

Congratulations 💕

Congratulations!! What time was the text? I didn’t realise the texts could come out in the evening x

Congratulations on your little ones award. My date is 19/01.
The wait is excruciating isn't it!

ThatAquaHedgehog
Just added in the sleepy managed to do something to the account

DaniCooling Sorry I meant this morning not this evening

Thank you 😊

Congrats on your award! We have the same scan date! Think I’ll give a call today. I think it’s deffo gunna be a decline for me xxx

Fingers crossed for you! X

Fingers crossed for you and anyone calling or waiting x

Good morning ✨️

Congrats to everyone who have been awarded and good luck who's calling 📞 today!

It has been a week from my last call, nothing so far... so calling today for an update.
5 months and 11 days of waiting. If no proper update I guess I will not have any other choice just to send out my complaint letter. As much as I do not want to do that, I have to. Upsetting.....

Fingers crossed 🤞 for you can't imagine how frustrating it is for you atm x

@Emzi538 Thanks. It doesn't make any sense why it takes so long. I feel like my boys claim have been ignored even though they can see I have waited for so long already with scan date 22nd of November 2023

Good morning my loves! ❤️

Got my fingers &' toes crossed for you all! Hopefully there's lots of good news and awards today!
&' remember we're a little family here now, so if feel deflated, disheartened or anything else; we are all here for each other!
kisses to you all! Xx