Posts: 2 | Threads: 1
Joined: Jul 2010
Reputation: 0

  • Registered
i all i need some help,i cant seem to get anything for my son.hes 2 and half and has mosaic monosomy 21 and ring 21 and hyperkinetic syndrome.he is g-tube fed and ive tried every brand of nappies on the market but nothing holding.but i just get told no to anything i ask for him.i also am struggaling with needing a specialist pushchair for him as hes to small for major that he was refered to.and normal pushchairs on market the straps are to big and wont tighten anymore plus he can climb out cause of his hyperkinetic syndrome.we had a ot she wasnt very gd,right from the word go she didnt want to help us with anything now shes closed his case yet we still got these isssues.i dont no what else to do cause noone is budding.please help im at my wits end cant keep him safe in pushchair.nappies wont hold his constant urine
Posts: 1,853 | Threads: 41
Joined: Oct 2009
Reputation: 13

  • Administrators
hi, my son was exactly the same with nappies, he has renal problems and his urine output is easily 3litres a day. in mothercare, they sell some thick nappy liners (they look like maternity pads) which i would put in his nappies. they made them last longer as otherwise he would be wet through within an hour. at night i would put 2 in and that would last 6hours....which still ment changing in the night but was better than hourly. i would recommend giving them a try, we didnt get nappies from the continence service until he turned 4, every area is different with their policy, nationally it can be from 3 - however each local authority set their own so ours is 4, your might be 3,4,5 or even 6. i dont know how they expect people to go to that age but you know what councils are like.

with regard to the pushchair, did you have a referal to wheelchair services? we went for a major because our son is big enough, however they offered us a wheelchair fitted for his specification - as they are crash tested if needed to go on transport - would they not fit one to your sons size? or looked around online for special needs buggies? - their are charities i could recommend if you found one that would suit if it was costly. People such as Newlife also i think have OTs that will help in that department aswell as funding it.

hope that helps

lucy xx
Posts: 2 | Threads: 1
Joined: Jul 2010
Reputation: 0

  • Registered
hi lucy thanks for getting back to me.yes the age for nappies here is 4.as for pushchair yes he was refered to wheelchair centre for major but hes to small.hes 2 half and is in 9-12 month clothes.i have found another pushchair which is suitable for ryan cause of the straps but noone will fund it,wheelchair centre said im to get another 1 of market i kicked up a stink witht hem told them i would have same problem.yea ryans ot we had is awfull,now shes closed case even tho weve still got these issues outstanding,they have little money apparently
Posts: 15 | Threads: 4
Joined: Apr 2016
Reputation: 0

  • Registered

I work for a charity called Caudwell Children and we provide funding for buggies / pushchairs for children with additional needs across the UK... Have a look at our website http://www.caudwellchildren.com as we provide a variety of different services that we provide for families who's  year income is £45,000 and below...

If you want to know anymore info or support in filling out application packs for some of our services please don't hesitate to contact me...
Bounce Ema Harker
Family Support Coordinator - London
Email - ema.harker@caudwellchildren.com
Tel - 07975 981769
Web address - http://www.caudwellchildren.com

Users browsing this thread: 1 Guest(s)