So upset, my 1y.o has no safe food, NEW development grr

God how awful, definitely complain. I think as mums we all feel irrationally guilty, o don't think you can get away from it. Jist remind yourself in your more rational moments that its not your fault xx

Thanks ladies, it just seems like one thing after another, I have lodged a complaint today and the company are going to send me a copy of the report regarding the matter once it is complete. I'm not sure i will believe it if it's not independent though. I'm going to see the gp tomorrow about his reluctance to take the milk and check he is otherwise ok.

Thanks again x

I can only second what has already been said.

Hopefully the GP will put your mind at rest about J xx

This is so awful .

@little1
How are things now?
Any news on an Alder Hey appointment? Have you managed to plan something for Joseph for Christmas dinner?

Thanks Simone for thinking of us x

Joseph now has 5 safe foods which is great (rice, beef, grapes (and raisins), yeast and pears). We went to see the Gastroenterologist at Alder Hey yesterday and it didn't go too well, the doctor was not familiar with Joseph's condition and the allergy consultant who insisted we should get referred to her has left and gone to another hospital in Ireland so Alder Hey now does not have a paediatric allergist They are trying to find someone else but we may end up being referred on to Manchester.

He has however booked Joseph in for an endoscopy to look with a camera down his oesophagus and stomach and take biopsies to see if he has a second condition called Eosinophilic Oesophagitis which is allergy related but unfortunately is not usually outgrown.

I've decided not to make him anything special for Christmas dinner as his appetite has been quite poor and i don't want to spend ages cooking for him to reject it. I managed to find a baby jar which is just rice and beef so i think i will just give him one of those. I have a load of cakes and biscuits made with rice flour in the freezer so i will pull some of those out to take to MIL in the evening so he has some safe snacks.

It's all a bit overwhelming at times and the difficulty in finding medical help is just adding to the stress. As i'm not working we really can't afford to pay privately again so will just have to figure it out ourselves and keep introducing foods slowly one at a time. The fact that he has passed 3 foods in a row is amazing (having failed 20 out of 22 previously) so maybe he is starting to outgrow it already.

Sorry if that was long, thanks again for asking x

[clothmama]

Thanks for the update Wow a growing list - that is great news A bit mixed on the other Dr fronts though. I really hope you get a good referral to Manchester if that is what needs to happen and that someone can help. Are there any support groups for his condition that could point you in the right direction for the next step in getting help?

I've actually sarted my own fb support group and am in the process of creating a website with the goal of helping others get a diagnosis. There are 2 specialists in London but logistically it is a nightmare. We do actually have a diagnosis but it would be nice to have a medical team locally for support. The allergist job is currently being advertised so hopefully they will find a new (good) one soon.

The website isn't finished yet but if anyone is interested you can have a quick peek here http://s506770172.websitehome.co.uk/index.html

Thanks for the update, I'm pleased you've found some more safe foods
Boo to the Dr having moved from Alder Hey though.
Where in London are the specialists based? Is there one at Great Ormond Street?
The website look good, it's lovely you are making the time to sort something out to help others faced with the same thing.