Please sign here by following this link: c.org/6zpQ5RxRMm
I feel like I’m always putting petitions on here but I have had such a tough time trying to get the right advice In Tower Hamlets, for specialised support for Avoidant/Restrictive Food Intake Disorder (ARFID) which is causing significant distress and fear to my family and me.
Until Edward was one year old, he tried a few foods; I even remember him eating a bite of banana from an actual banana, and then it all stopped. I could only get liquid foods down him with a lot of struggle. As he has a global development delay and autism, he also has such high sensory needs that he just has no interest in food whatsoever and the textures of food make him gag. When he does eventually eat he has to be in his own ‘bubble’, no one near him apart from me. He hasn’t eaten at school at all this year. For example, if anyone eats a packet of crisps around him he can’t tolerate the noise of the packet and sends him into meltdown. After a lot of trying, when he was five he tried toast he now only eats toast and pizza (the same type) every single day. If he doesn’t eat this there are no other options left, he refuses to try anything else now. It’s extremely stressful for me to see this. I have tried to get support and because he can swallow (he doesn’t chew his food properly and that’s scary in itself) there is no support. The only place I can get the correct support from is Great Ormond Street, but they don’t accept referrals from the GP only CAMHs and they say they won’t as they don’t have the resources to do this. The fear of him dropping his last foods is scary as I’ve seen him do this before but we always had the bread to keep him going.
All I need is support as I know no one can get him to eat but if it does get to a situation, which we were in a few weeks back where I had to take him to hospital as he couldn't eat a thing due to him feeling under the weather, they very nearly put him on a drip but Edward can't tollerate this at all. Even the doctors at A&E couldn't understand me when I was explaining about Edward.
Please can you help me by signing this petition, thank you. The link is in my bio… 🙏
Until Edward was one year old, he tried a few foods; I even remember him eating a bite of banana from an actual banana, and then it all stopped. I could only get liquid foods down him with a lot of struggle. As he has a global development delay and autism, he also has such high sensory needs that he just has no interest in food whatsoever and the textures of food make him gag. When he does eventually eat he has to be in his own ‘bubble’, no one near him apart from me. He hasn’t eaten at school at all this year. For example, if anyone eats a packet of crisps around him he can’t tolerate the noise of the packet and sends him into meltdown. After a lot of trying, when he was five he tried toast he now only eats toast and pizza (the same type) every single day. If he doesn’t eat this there are no other options left, he refuses to try anything else now. It’s extremely stressful for me to see this. I have tried to get support and because he can swallow (he doesn’t chew his food properly and that’s scary in itself) there is no support. The only place I can get the correct support from is Great Ormond Street, but they don’t accept referrals from the GP only CAMHs and they say they won’t as they don’t have the resources to do this. The fear of him dropping his last foods is scary as I’ve seen him do this before but we always had the bread to keep him going.
All I need is support as I know no one can get him to eat but if it does get to a situation, which we were in a few weeks back where I had to take him to hospital as he couldn't eat a thing due to him feeling under the weather, they very nearly put him on a drip but Edward can't tollerate this at all. Even the doctors at A&E couldn't understand me when I was explaining about Edward.
Please can you help me by signing this petition, thank you. The link is in my bio… 🙏
