I'm confused!!!

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.

However, since then we have been up and down again with him eating some days and not others. Today he only ate a small handful of dried cereal, 2 biscuits and a bit of custard (which is a new food for him so i'm thrilled about that) and he drank his usual neocate. I can't work out if I am just expecting too much for him to eat meals and it's fussy behaviour (or just a small appetite) or if his eating refusal is a sign that his EGID isn't completely under control.

He mentions a tummy ache every few days but he doesn't cry with it - and he does get on and off constipation so could it be that? Or is it flare ups?  How do we know?  One minute he's constipated and the next he's the opposite. His sleeping varies such a lot. Some nights he may only wake once but other nights are worse - last night he woke 6 times.

We think tiredness is making things difficult too. He gets so tired by the evening that he often cries and won't eat. He doesn't want to nap in the day though so I'm not sure the best way round it. I cook a hot meal at lunch and dinner in case he's less tired and more willing to eat at lunchtime but he rarely eats much lunch so it hasn't been working.

I think the not knowing whats what is the most difficult bit. I don't want GOSH to introduce stronger drugs if he doesn't need them but equally I'd love to see him sit and eat proper dinners.

The good news is that his brother is still doing really well with his eating. I can't believe how far he has come in a year! I never thought I'd see the day he'd ask for prawns for dinner! It's mixed news on the food trials. He seemed to do well when we trialled egg in baked goods e.g cakes and he seemed ok when we started small amounts of soya but when we got to soya bread he had a bad week and weren't sure if it was connected or not so stopped it.

We were also asked to trial stopping his ketotifen which we did but he had a week of stomach aches and his sleep deteriorated significantly so we put him back on it and things have settled again. I am guessing this means he hasn't grown out of EGID then? He is sleeping  better again but in the last 4 months he's been waking so early - sometimes it's 4.30am. He gets so tried but seems unable to sleep longer and I worry it's affecting him at school.

Anyway, overall we are still doing well and have come a long way - for which i am very grateful.  My boys are so lovely and I am very proud of them.  I'll really miss them when they are back to school / preschool as I've really enjoyed spending time with them over the summer.

Kitty 

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