Dla wait times part 14

[Tiredmamma74]

New thread as others are full

Thank you, fingers crossed for you Aswell.
My scan date is 26/6 phoned for forms 5/6.
I hope we all get what our children deserve.

We’re 12+4 here (Scan date 12th July) so still a good few weeks to wait. Feels like forever. Hoping for the best news for everyone.

@Mummyrach13 hey,
i see that your little one has an ARFID diagnosis? What age was they and are they under someone for this? My little girl who is 7 has been diagnosed with ARFID in august 2023 she’s struggled with food since august 2019 since she was 3 years old and still struggles immensely to this day it’s awful, how do you cope with getting your little one to eat if they do that is ? My girl also has suspected ASD/ADHD along with SPD too. I’m struggling to help her in many different areas but food is one of her biggest problems.

@Pumpkins3 we have the exact same scan Date 12-07-23 the wait is awful we’ve got roughly just over 4 weeks left

Hey billie, it’s all totally new to me to, it’s only come to light more so this last year, we are under camhs and they have said ARFID we are very new to it though so have a meeting with dieticians/ eating disorder team next week to find the next steps. My boy is nearly 13 and tiny, he is low on many vitamin groups now too, he only eats around 6 food items and it’s so difficult, I spend so long preparing, encouraging food that often goes uneaten. I’ve now been told at the moment to let him have just the few things he will eat on repeat. It’s very challenging amongst all the other issues.

Hiya Billie

It’s nice to find a scan date buddy. My letter said 15 weeks but it looks like it’s taking 17 now doesn’t it? I had a text on the 19th Sept to say they’re still looking at it. Fingers crossed for all of us!

Hi everyone, can I please ask for people who have children diagnosed with ARFID how you went about getting it referred?
my son is currently on the autism waiting list but his issues with food are becoming really difficult.
will eat nothing one day, 5 bananas the next and actually eat his safe foods another.
its such a battle. Hes only two and really struggles with touching food, mess, smells, tastes and only eats a handful of foods.
(he also overstuffs his mouth alot)

@Mummyrach13 ahh okay so you’re right at the beginning and your little one isn’t so much as a little one anymore did you pick up signs before now or have they just suddenly stated, it’s all so confusing as I keep being told the not eating is also down to the asd side but with an ARFID diagnosis, what food groups can you get you child to eat ? Mine she will only stick to burnt toast, certain crisps some junk food (mainly certain chocolate) and the only main food meals I can get her to eat are chicken breast steaks. How are you Coping with it all? As it kills me each day with her not eating the peads put her on these shakes but they’re not working she will refuse to take them due to the spd side. She also doesn’t sleep and is on melatonin I think it’s all linked but I don’t know anymore

sorry for the long message lol x

@Georgia174 hey hun, my little girl hasn’t properly since she was 3 years old. So it’s definitely been a long battle for me to get her the help she needs, one thing that I found helped massively is write a daily food diary breakfast, lunch and dinner with anything in between also and how much you can get them to eat and also include what fluids and how much they drink of that too it all helps massively. Talk to your child’s GP surgery also and give them your child’s food diary also try to keep note of if you notice any triggers that may stop them from eating such as textures, smells and taste. I hope this helps it took me 4 years for them to finally see my little one needed the help and I hope for your little ones sake you don’t have to wait as much too. As your little ones only two they may try to brush it off due to his age that’s what I got from the begging but don’t let them make them listen hun x

Yes very early days for us, your daughter sounds like my boy, I’ve noticed over the years what I would say a fussy eater but since last year it’s been so sudden and now such a big issue I’m not sure if it is the ARFID as they say or the fact he has OCD and contamination OCD Aswell as intrusive thoughts so he thinks everything is poisoned or if he touches or goes near food he’s contaminated it. Like your daughter he will only eat chicken, apple, cheese, certain choc such as a wispa and pasta. He can often eat something for a while Then will totally refuse. So I’m really not sure. He’s been prescribed the extra vitamin tabs he’s lacking and he’s underweight so not sure what they will do to help with that.

@Billie1993 my boy is also on melatonin and has a terrible sleep pattern but again I’m not sure if it’s the ASD or the OCD etc. These are all things that a psychiatrist and CAMHS have diagnosed.
don’t worry about the long message it’s comforting to talk to others in a similar situation.

@Pumpkins3 hey :),

ohh it most definitely is to find a scan date buddy I’ve seen a few that are around the same date as us also, yes I also received a text message on the 19th September also, I’ve received two letters the first one to let me know they have received the forms and with the scan date, then the second one around 4 weeks later stating they’re still looking at the claim. The text message was the first one I have revived so far. Hopefully these past 4/5 weeks go quickly for us and all that’s close to our scan date :). X

@Billie1993 thank you for taking the time to reply! I will definitely be taking more time to make a food diary. Its a constant battle and worrying hes getting enough of what he needs. Hopefully we get the help :)

Hey all.. newbie here ...
These wait times tho ... I have a 5 year old autistic little guy ... my scan date is 14/8 so I have a long way to go before I get a decision .. goodluck to all waiting :)

Morning everyone! Is anyone from scan date week commencing 12th June going to call today?
Im so tempted but I only called 2 weeks ago so I may get shouted at 😂

15th june. I’m waiting til Thursday. Then I’ll be exactly 17 weeks, if it’s with a dm I can call back Friday 🤣

16th June for me. Hope you don't get told off too much if you do call 😂 I'm not calling until next Monday.

I’m 17 weeks Wednesday but I’m at work so won’t be able to call. I may wait til Thursday too 🫣

morning all - scan date 5 june - been with decision maker since wed. called Friday and still no decision but i did send a massive statement and lots of evidence out of anxiety about not sending enough so quite a bit for them to read though. i will be calling today. Good luck everyone :)

Scan date also the 5/06 rang at 17 weeks and was told should hear by next Wednesday losing hope slowly

Scan date 6th June, rang Thursday and Friday was with DM

@Missymoo1994 ahh ok - same as me - as in this weds? x

Yes man I spoke to said should have a decision by Wednesday but I am aware of people after us being accepted/declined, longer it takes the more I think decline ... so stressful if you get any answer where yours is let me me x

@Missymoo1994 yes of course. i am going to ring at 9am so I will keep you posted. are you ringing or waiting till weds? x

Is anyone with the dated around the 15/06 calling today ?

@creeve09011990 going to try and get through today we shall see was on hold 2 hours last time x