Dieticians appointment, what to ask, suggest and say no to?

[outofherdepth]

Hi, I'm a mum of 2 EGID sufferers. My little boy whose almost 4 and my little girl whose 19 months.

My daughter has had some major set backs this past 6 weeks, with reactions to corn, potato, quinoa and chickpea to add to her list of dairy, soya, egg, wheat, oats and rice. She also can't tolorate neocate or nutramigen AA. And I've been making a bit of a fuss with her gp/consultant/dietician as she has been so poorly and misrable and started to lose weight.

My dietician has managed to make time to see me on Thursday. And I wanted some advice on what to ask or expect. Can anyone help?

Thanks so much x

[Hidden]

If she has reacted to Neocate then you need paed gastro input IMO. At her age and especially on a restricted diet she needs some kind of nutritional formula, milk alternatives like rice milk are not recommended at all for under 2 and only in cooking until age 5 rather than a drink. You could ask to try something like Seravit and consider eO28 which is an elemental formula but tbh you are getting stuck for choice if she cannot tolerate either Neocate or Nutramigen AA. Big hugs though, it's tough xox

[outofherdepth]

Thank you for responding twinsplustwo.

Can i ask, do you realistically have any idea what will happen if these formulas arent suitable? Are we then onto parenteral feeding?

I am all for what ever makes her fit and healthy again, but i would like to be prepared x

[magsA]

I would ask for suggestions on things you can make yourself as treats or to keep "eating" as part of the routine. It becomes very easy to end up reliant on formulas / feeding and for small ones to have a fear of food.

Also I found getting consistency right helped a lot with swallowing.

I don't know how bad things are for your two babes but I have found trying to keep one or two things that you can eat going even it is only a few spoonfuls helpful long term.

Remember small ones are fab and far more stoical than us. Never apologise for making fuss, when you or a loved one has something many doctors I have come across cant spell let alone understand you have to fight.

Good luck

Mags

[outofherdepth]

Than you for your advice. We saw the dietician and she was great. Fotunately my little girl had put on weight so she's going to go down the serevit route. But she also suggested trying polycal, which we did today, unfotunately she's reacted to that too. Other than that we are continuing to feed her what she wants, when she wants. Raisins at midnight is not unusual. But whatever keeps her strong. Desperate to stop their pain now. Do anything I could to help them x