Now he's having a flare up!
So things are not going well. Heard from the dietician today and she is happy for us to try the elemental 028 extra my friend Michelle suggested BUT not while he is mid flare up. Makes total sense but frustrating non the less we are no further forward.
He vomited in the car yesterday, hasn't done that for ages, looks horendous, complaining of more pain in his stomach, very distended and the foot pain is worse. All signs of a flare up but GOS weren't keen on anymore steroids as he's had so much this year already.
We are going to mix the elemental 028 with the neocate initially to try and get him to tolerate it. When? I asked the dietician how long he needs to be "better" before we can try. Not heard back yet. It may be spring if we have a bad winter. Weighed him and he is still the 12.4kg he was when we saw the dietician and less than he was 20 months ago.
We are back to GOS in a month to see what they think next. I assume they won't want to do modular feeds when he is mid flare up so we are keeping that at bay for now.
His case goes to panel tomorrow so fingers cross we get the one to one help he needs. We are then seeing the community paediatrician involved in the statement process wednesday. Waiting for her to go on about potty training. At least I can tell the excessive thirst and urine output are condition rather than drug related.
Got a call to pick Izzy up from school. Took her to the drs as she's had this earache for over a week and it is all making the asthma worse. She is seeing our local paediatrician tomorrow for her review. She's been complaining of pain every meal for weeks now.
So all good fun here and my husband has trips to mexico, venice and vietnam in november. Lucky him eh!
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Hi Helen
what a nightmare. I am sorry he's having a flare up. shame you can't start the elemental 028 yet but i understand why. Hope GOSH have good advice for you when u go up? we are going in Nov too.
Gutted Izzy is ill too - has she got an ear infection? horrible for her to be in pain every mealtime. i wonder what she's reacting too? do you think they could have made a mistake thinking she doesnt' have EGID too?
good luck with the panel tomorrow! they have to agree to the extra help surely! hope u don't get pressured about potty training - you've all been going through so much that potty training can't be that important. You and Ben both have to be ready to do it. It has to be at your pace, no one elses.
We've been having tricky time with our two. Their behaviour has been really difficult and B has screamed a lot all weekend and been very aggressive to L and i'm suspicious he's in discomfort. During one of his tantrums yesterday he said his tummy hurts. He has that grey look again and is still being a mare with food - we struggle to get much in him other than crisps and neocate. he can handle some snacks but is very anti meals.
Both of them have struggled to get over their cough/cold. Started the azithromycin yesterday. hope it helps.
Hope u r ok,
Kx
Hi Kitty
Sorry you had a bad weekend. It is so hard coping with these problems. I am sure there must be a link with B's behaviour to how he is feeling. Unfortunately he is still too young to understand it all. When they are L's and Iz's age you can reason and explain it all more. All he understands is he feels bad and nothing seems to change it.
Fingers crossed Una has some ideas for you when you see her in Nov. We are there on the 3rd. Would be nice to coincide one day!
Haven't heard the panel result. We see the com paediatrician tomorrow so she may know. WIll show her a copy of our recent clinic letter that says excessive thirst, urine output and lack of bladder control are all part of the condition and these are issues I quote "I have never, ever been able to resolve". Somewhat depressing on the one hand but at least I have an answer for her!
Iz saw the local con today and I feel really bad. Cos we have Ben to compare her to I think we have underestimated her problems. She was concerned that she looked so pale, very distended, awful wind, pain every mealtime and has only put on 200g in the last year! She said she didn't feel we can do nothing. Wants her rescoped. I have always said I think she has EGID and they missed it through poor bowel prep, not getting all the way round and limited number of biopsies. Anyway we are starting her on sulfasalazine and go back in 3 weeks. We should have done something sooner.
Hope you find the azaithromycin helps. Ben back on it 3 weeks and hasn't caught Izzy's bug. Yes an ear infection poor thing. Increased her inhalers too.
Take care
Love Helen