We've just been to Great Ormond Street

We've just had our review at GOSH and it was a mix of good and bad. We saw the consultant, dietician and feeding specialist and all 3 were really pleased with the progress of our eldest son. They feel his EGID is definitely improving and they want to try him on some egg/soya (he must stay dairy-free though) and we can even experiment with stopping medications after the Spring. This is great news!

However, things aren't quite so simple with our 3 year old. He has been refusing food/drink again and it followed a week where he had choking episodes again. These episodes are getting less frequent but they still scare him and us. After choking he spits out food for days in fear. Then he slowly starts to eat a bit but not much and is often hysterical at mealtimes. He complains of hunger day and night.

The consultant said it's possible he has Eosinophilic Oesophagitis as well as the problems lower down. An endoscope and biopsy are the only way to be sure so he wants us to monitor the choking for a few months and then decide.

The Feeding Specialist and Dietician were very supportive and we showed them a video diary of his eating problems. They've told us to take the pressure off for a month and not to insist on meals - we can just give snacks throughout the day. We can also increase his Neocate intake to try to reduce his hunger. He now also has a bottle in the night to try to stop him waking so often with hunger.

It makes me so sad watching him at mealtimes - it's as though he wants to eat but just doesn't feel able to. We need to increase his confidence in eating. She also suggested we lay off tooth brushing as this also makes him hysterical. - Instead we are using a finger brush and a cloth.

Interestingly, the consultant found both boys have very mobile joints and this could explain their joint pain. I am hoping my GP agrees to some physio for them.

Overall things are still much better than they were a year ago - still longing for more sleep though!

Kx

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