2 year old with multiple food allergies refusing to eat

[jennyh]

good luck for friday

[Jimbob]

Thanks Jenny. How is India at the moment?

[jennyh]

have been back to dietician and are excluding loads of things again .she said to re-introduce 1 at a time like last time as she thinks build up of foods could be making things worse.my only concern is if she is ok with 1 and i start another will we not get the same problem again?i am trying to think it out so much my head hurts .thanks for asking

[Jimbob]

I know exactly how you feel. It is a hard process, we went back to basics a couple of times with James. The thing that made it easier for us was that James never got excited by food even when he did eat normalish so did not mind being givenone food at a time. It does become fustrating though when you have a food that is fine and then thenext thing you try causes problems. Good luck, I hope it improves things for India.

[jennyh]

 

[Jimbob]

Friday was a complete waste of time. We went in and explained how James was still only having the neocate advance and eating raisins. How he looked frightened if you even attempted to give him anything else. How on the odd occasion that James had tried anything different that it would usually end up in him screaming in pain at night pulling at his stomach, mucousy nappies and an eczema flare. First of all the paed Gp did not believe that was all he was having and said that on the last letter from the hospital (which he read off the computer whilst I was there) it did not state that James needed to be on such a restricted diet. I said I know that but James will not eat anything else. He then suggested to give him toast with butter and a soft boiled egg as most children love this. I then stated that James is allergic to egg, wheat and dairy and whilst we can get safe bread and a safe sunflower spread James will not even touch it so no chane of him eating it. He then suggested to keep a food diary as this would help to find the foods that he reacts to, like we have not done this before. I then stated that all it would consist of is food that he is offered and then taken away as he will not eat it and neocate and raisins of course. He then asked what I would like him to do as he is not a specialist and I explained that we wanted a referal for a second opinion. I gave a list of hospitals that had allergy specialist and GI specialists. He said that he would not consider refering James at this point until we have had the next appointment with James's consultant and explained the whole situation otherwise we could upset the consultant as he has been seeing James for a long time now. I responded by saying that he has done a lot for James when it comes to his eczema but nothing seems to be being done to help James atthe moment. After a long talk he said that he will refer James after the next appointment if we still feel nothing is being done to help but it would be to another paediatric consultant as he feels that they are specialised enough to deal with situatins like this. Well in James's experience so far that is certainly not true. In a couple of months we should have more money coming in so will be able to pay for a private consultation for James to try and get things moving. I just felt so fustrated, annoyed and completely let down by the nhs after the appointment. This should certainly not be the case when a child is concerned.

[jennyh]

imo thay are taking the michael .no advice i am afraid.

[taygensmom]

I haven't read all the posts, so forgive me if you have already talked about this, but have you seen a dysphagia/feeding specialist??? If there are foods that James tolerates "OK" and doesn't have severe reactions to, but perhaps refuses to try because he is just plain scared or is showing alot of behaviors with foods that you know he can tolerate and has liked in the past, a dysphagia specialist might be able to help while you are investigating the medical issues further...

[jennyh]

well last night was the worst for ages.she rolled around and cried all night then was sick at 4am .just got off the phone to my mam and guess what,she put chicken gravy on her veg last night.i am hopping mad.i thought of all people she understood.
how is james?

[Jimbob]

Jenny, I am so sorry to hear that India had such a rough night. It is awful when people you think understand do something like that. I hope India starts to feel better soon. James actually had a good night, he did not eat any raisins last night and slept so much better. I am not sure if it is because he drank more neocate so did not get as hungry or if the raisins do cause him mild problems. We are going to go for no raisins again today and see what happens.

Taygensmom, James is supposed to be being refered to feeding clinic by his dietician and now his consultant but nothing has happened. It was first mentioned when James was admitted to hospital so they could monitor how much neocate he was taking and to see if he would try anything different in new surroundings. It was also so he could get to see the dietician earlier. It was the dietician that mentioned the feeding clinic at the hospital but does not seem to have followed it up. So that is another thing we are fighting for at the moment.

[lovedtodeath]

I am so sorry you are going through all of this. We went through similar for only 10 months with our oldest, and gave up on Medical Doctors. They could not help me with my Chronic Fatigue for six years, and I was not going to let my DD suffer that long! Most wouldn't even acknowledge food sensitivity. "Food Allergies cause breathing emergencies" Just kept putting her on reflux meds, which not only did not work, but ignored the diarrhea.

Anyway, wanted to send you some hugs!

[Jimbob]

I had James weighed yesterday he was 12.98kg (28.6lb) dressed. This puts him around the 9th percentile which is not too bad. He still has the same issues with food so we are waiting until we have seen his consultant on 29th June to see if things finally get moving or if we can then get a second opinion on the NHS. If none of these things happen we should be able to get a second opinion privately in around a months time now although I do believe that should not be neccessary.

[lovedtodeath]

My brother had reflux and low weight gain, it turned out he was missing an enzyme needed for protein digestion. Reflux is a symptom, not the disease. Western medicine. I hate it.

I recommend this book: 5 yearsd without food a food allergy survival manual, nicolette dumke. lots of good info on causes and treatments, diets and recipes.

Hope things get better for you.