Funding request denied. Who can help?

Have you tried some of these for support?

www.raredisease.org.uk/about-rare-diseases.htm

raregenomics.org/ebooks/?utm_campaign=Ebook&utm_source=ppc
www.action.org.uk/our-research/targeting-rare-diseases-children

I just picked some of these up by googling rare diseases. I had heard about these organisations on the radio.

CAMHS for a 21 month old!

Are they all recommending a feeding tube, GOSH included? It may simply be that this is what is necessary.

I don't see the breast-feeding as a problem, in spite of his age - he is getting nourishment, that is what is important.

I am sorry that you have this problem in your family.

CAMHS does seem a strange one.
I do empathise as DGS has had heart surgery and had feeding problems for the first two years. May I ask, what the funding is actually to cover?
I wish your DGS well and good luck to you all.

I could not understand CAMHS at all.

What is your GS's syndrome? If he can breast feed, he can clearly swallow liquids and suck ok.

What measures have been looked at already by his Doctors? Is it solids he cannot cope with?
Have the childs parents had a really good explanation from the medics about his condition, and how it may progress?

Are they suggesting he is scared of switching to real food? Is that why they've suggest CAMHS?

Just another thought. That little boy is very young, could the medics just be waiting to see how he progresses until he is a bit older and stronger to undergo any surgery that might be needed?

Many thanks for your responses.
Ninathenana, the funding is for av psychology service that specialises in children's feeding disorderss and has a 100% success rate. The feeding tube is an easier, but more expensive option and puts him at increased risk of infection. He cannot tolerate a bottle or any solids but has recently started to lick yoghurt. His gag reflex has not developed in accordance with his age.
Nelliemoser - yes that is exactly what they have done but if he's not getting proper nutrition by the time he is 2 then a feeding tube is necessary. All very frustrating especially when there is some hope for him but no funding to the right service. Many thanks for the links, I will follow these up

CAMHS may be very appropriate - I know of services which see babies and toddlers under five, alongside their parents, usually because of attachment issues, but feeding issues may have a psychological element, too, perhaps because of underlying physical factors.

If the service on offer is like this, then it could be right for your gs.

Hope it works out - how worrying.

Poor little thing. How wonderful that he can breastfeed.

I don't know the answer to this, but is there an option to apply for part-funding for the psychological services option?

It seems bonkers that he is being offered a more expensive treatment option, if the preferred one that is being rejected is cheaper.

I hope help is found.