Hi,

Just need come advice, my daughter suffers with serve acid reflux, every doc is really annoying me at the momnet when they keep saying its a trial and error thing untill we solve it. why cant they see that she isin a lot of discomfort and sort the problem out, every medication they have given her so far aint working, when she eats any food she is either really sick or really uncomfortable, i really dont know what to do any more, can someone give me some advice please.

Many thanks

xxxx

Well I'm confused as usual!

3 weeks ago we had an awful week with food and our son pretty much lived off crisps and cereal and kept refusing meals.Then he suddenly changed and we had an amazing week where he tried something at every dinner for about 8 days and even tried 2 new foods! It was heaven!  It coincided with him doubling his does of Ketotifen so I felt sure it was that and hoped we'd really turned a corner.

We went back to GOSH yesterday to the parenteral nutrition (PN) clinic for Ben's 3 month review.  We had gone thinking they would probably want to try enteral feeds again despite him having horrendous diarrhoea and having had another flare up and 6 more weeks of steroids.

The plan is for us to have a joint appointment with the PN consultant and an immunology consultant.  They think that some of Ben's problems are down to his immune dysfunction so want to look at the possibilty of trying him with immunoglobulin replacement therapy.

Well I have not been on here for ages, mainly due to my ill health but we have had a double blow Josh who had been feed free for three months and food trailing is back to feed only.

It's been a while since I blogged. As usual, things are a bit up and down in our house.

Our youngest has been having some bowel problems that GOSH have said is a flare up. We have been advised to try some medication changes and see how we go. He is also suffering really badly with his joints - it's horrible when he's in pain as there's so little I can do. I just rub them or put hot water bottles on them. He's starting hydrotherapy again in a few weeks so I'm hoping that helps.

My 11 week old baby boy had just been prescribed domperidone for acid reflux, has anyone else tried this? How long does it take to work? He is having 1ml 4 times a day. How long can he stay on it for? I forgot to ask doctor?  Does it stop all symptoms, such as gagging, hiccups and sickness?

It's been awhile. the blog won't let me post, hope it does today.  My little boy has been in and out of the hospital wiht stomach pain.  They ran another scope it came back better but not clear of eosinoplic cells.  the thing is his pain comes back almost everyday, i give him all his meds but evening and night seem to be the problem time.  The dr just says we will have to learn to deal with it and not to ask him how he's feeling so he don't think about it .  Wish there was more i could do

Brandi

Well I'm really glad I went to the Allergy Show at Olympia. I bought lots of food products to try with the kids and I met a really nice lady who makes fantastic birthday cakes for kids with any food allergy (she has a great website http://www.thecakecrusader.co.uk/ ) which will help for upcoming birthdays. 

My little boy is 6. He has EGE, we have know about for 2 months.  He has been in the hospital once since we learned about his EGE.  This past weekend was really rough, was in the ER on Sunday, they gave him a enamia to help pass stool.  Well he isnt getting any better, his GI DR.

We've been doing so well for so long, so it's a bit of a shock that we've taken a step backwards.  Both our boys caught a cough and cold about 2-3 weeks ago and it has really affected them both. My eldest son has complained of tummy ache most days since and so has our youngest son.