Selective Eating Disorder - Anyone?

sticher

Hi, it's a long shot, but does anyone know anybody who has been diagnosed with Selective Eating disorder? I am sure this is what my son's problem is, but I am struggling to find anyone in the NHS to help - they just keep referring him to a dietician! I will go and see the dietician, but they have lost his referral and nobody seems to know who he should see.

Thanks.

patchwork_cat

Has the Dr re- referred him to the Dietitian? Do you think that maybe a psychologist might help?Great Ormond street have an eating disorders team that details selective eating in their factsheet about eating disorders, so presumably they would treat it. It might be worth a call to them.

thinkginge

my son is only three but at two years old he was diagnosed with total food aversion, he literally wouldn't eat anything bar raisens, turns out due to further tests he has alot of things wrong with his stomach/bowel etc. but now he still has food aversion. we can go through stages of him just eatin dried fruit. the next just eating yoghurts. this isn't fussy toddler behaviour this is a real problem.

we literally had to sit with doctors/ psychologists etc to try and get him to touch food , he was petrified.

is this the sort of thing your talking about?

sticher

Hi, thankc for the replies.

I spent all morning on the phone trying to find out where the referral has gone and eventually my GP faxed it over to the dietician again. I am hoping the dietician's office will ring me on Friday with a suggestion of whom she can refer him on to.

Thinkginge, yes that is the type of thing I am talking about, although my son does eat a few types of things. I don't think my son has anything physically wrong as he is 9 now and hopefully I would have noticed, but who knows. He does seem quite scared of some foods though - baked beans and tomatoes for example - won't even sit near someone else who is eating them.

Is your son better now? Does he eat a wider range (more normal range) of foods?

I think I might give Great Ormond Street Hospital a ring/check out their website for some info.

thanks again.

nuttywoman

My son is 22 and has never eaten a hot meal in his life, up until he was well into his teens then only what i would call dry finger food.
Everyday for all his school life he had cheese sandwiches.
Now he`ll eat cooked pasta with just cheese on it, garlic bread, pizza`s etc and sometimes sausages, bacon rolls.
This has gone on since i weaned him, if i tried giving him a variety of food he was sick.His older sister eats proper meals but son has never eaten a xmas dinner yet!
Now he`s a strapping lad of 6ft 2 inch, doing a heavy lifting job.
I thought he was the only one like this but my cousins son in Ireland was exactly the same - and he`s now in his 40`s.

thinkginge

hey stitcher.

my son was diagnosed with something called allergic enteropathy. it basically means his stomach or bowel will have an allergic reaction to food.

it was really bad at the beginning once we found out he was admitted to hospital. he was point blank refusing to eat to the point that if a plate of food was anywhere near him he would claw at me to try and run out the room.

he had reactions to everything in the beginning even fruit veg. now the dieticians got him on a gluten/soya/dairy/wheat free diet.
as hes allergic most to these.

im not gonna lie to you it was really hard in the beginng trying to get him to eat. he was petrified. i lost 4 stone in weight with worry about him. but we've got through the bad times.

right now he varies from, willing to eat, to im not touching anything. he still has a mega aversion to most fruit except banans, apples and anything dry. he'll eat meat, wont touch wet foods, hard foods etc. list goes on really.

my health visitor is really supportive, she told me something that really helped me at the time. i used to make up to 20 different things a day from sratch to try and get him to eat, then sit with him, try and bribe sometimes even tried to force him to eat. only made it worse. she told me i was doing my motherly duty by buying the food, then cooking the food, its my sons choice to eat or not. its not my fault if he doesn't

i know its really hard but try not to force the issue, try and ease of mealtimes, put the plate down, walk away busy yourself with something.
leave the plate there no longer than 20 mins, take it away and dont comment.unless hes eaten something then praise. its really hard but this is what the doctors etc told me to do. feel free to pm me for more in depth advice if need be.
my son was at sick kids edinburgh dont know where exactly you are, but demand to be sent to a paediatric hospital, not just a local with childrens ward, they're not specialized enough

sticher

Nuttywoman this is what I am afraid of - I want him to start eating normally NOW, lol. He has a school trip in a couple of weeks - I am really worried he will be so hungry he won't enjoy the trip - or worse is ill as I won't be there to make his pancakes, lol. I know it is already affecting his life - even he worries about what he will be able to eat when he goes out.

Thinkginge sorry to hear about your son - I hope he is much better now. I don't think my son is actually allergic to anything - although I wouldn't really know as he has never even tried most foods! I am going to push for help for him though. I went on the Great Ormond Street website last night and they will accept referrals from GPs or dietician, so I will mention that when I speak to the GP or dietician.

Thanks everyone for your help and suggestions - it is a relief to know really that he is not alone.

Nutty woman, for Xmas dinner last year my son had a marmite sandwich! He doesn't even have butter on it - yuk!

destiny_star2006

http://www.fussy-eaters.com/
Support forum for what your going through xx

nuttywoman

sticher wrote: »

Nuttywoman this is what I am afraid of - I want him to start eating normally NOW, lol. He has a school trip in a couple of weeks - I am really worried he will be so hungry he won't enjoy the trip - or worse is ill as I won't be there to make his pancakes, lol. I know it is already affecting his life - even he worries about what he will be able to eat when he goes to the GP or dietician.


Nutty woman, for Xmas dinner last year my son had a marmite sandwich! He doesn't even have butter on it - yuk!

Tell me about it! like when he went for leavers meal at school, i had to get the school to order pizza or chips for his meal when the others were getting a 3 course meal for the same price :mad: . Also weddings we were invited to, i had to take his own food with me,lol

sticher

destiny-star - thanks for that I will take a look in a moment.

Nuttywoman - I know what you mean - I always travel with marmite sandwiches for Alex.

I have just spoken to someone at Great Ormond Street Hospital, and although she was very helpful, it has made me frustrated. Apparently their team is not very busy at the moment, but I need my GP to refer my son to a paediatrician, who will need to see him and then refer him to them - which will take ages. By which time GOSH will probably be very busy again. Shame I can't just pop up there with him today, lol.

Thanks again everyone.

sticher

Destiny-star - just had a look at that site, and have read loads of the posts.

I am near to tears now - think its relief, because over the years I have been told things such as 'he'll grow out of it' or 'alot of kids are fussy', even worse - 'let me have him for a few days, and then he'll eat'. Now I realise there are alot of people out there with the same problem.

Also, I feel guilty because I have left it so long to insist he gets some help, and that I have on the odd occasion tried to force him to eat and told him I will take him to the hospital and they will MAKE him eat.

Thank you so much for giving me that link - it will make all the difference to our lives now.