EGID

Submitted by Kitty on Sat, 10/29/2011 - 20:30.

We went to Great Ormond Street on Monday to see our constultant. I came away feeling a bit sad about how things are going. Our eldest son is impoving gut wise but is moving along 'the allergic march' and on Friday he had an allergic reaction to something and his eyes swelled up. If we carry on following the allergic march then immediate allergies and asthma could be the future. We need to get a referral to an opthamologist so we can get a specific treatment for the allergic reaction in his eyes - allergic conjunctivitis.

With our younger son (he's 5) they felt he needed to go back on prophylactic antibiotics as he flared so much last winter, and he also needs a referral to ENT about his ears. The most disappointing bit was that they felt he could be suffering from oesophagitis and that this is the cause of the choking episodes and why he needs to spit food out a lot. The consultant asked our son to describe his swallowing and he said food gets stuck and pointed to his throat. He also said that he needs drink to get food down sometimes which apparently is a classic sign of oesophagitis. I really worry now about if he chokes again and all the what ifs - what if i can't shift the food, what if it happens at school and the staff don't see, what if he doesn't get invited to peoples houses because of it......... what ifs aren't helpful i know but its so hard not to think about these things.

So, our 5 year old has to have scopes and biopsies done, they said it would be in the Spring at the latest but if he chokes again before then, it will be brought forward.

I know we have a lot to be thankful for, and we are lucky our sons aren't as ill as many other children with EGID, but it feels so unfair that our son has to suffer this - the scopes and suffer the illness. I would give anything to swap places with him and it be me. i wish it was me! It must be so frightening for him to choke and its no wonder he often refuses to eat and only likes certain 'safe' foods. I really hope we get answers soon and that there is a treatment that helps. I just want them to be happy and healthy and not to have any worries. They are so young to have all these stresses.

Anyway, thats us. I hope everyone elses kids are well.

Kitty

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Submitted by Kitty on Sun, 10/30/2011 - 10:05.

I'd just like to say that whoever invented the clocks going back, clearly didn't have a littlun who likes to start their day at 4.30am... which is now 3.30am!!!! Is this really our new morning time?!!? arghhhh!

Submitted by Guest on Sun, 10/30/2011 - 16:24.

well Kitty I am not sure about that, but I was woken up early this monrning and not by a child. Hubby screams "I have been stung. " He rolled on a wasp in his sleep and the wasp was not happy. And I was having a lovely dream. So much for my anticipated longer sleep!!!!

Submitted by Guest on Sun, 10/30/2011 - 16:50.

That must have hurt!

Submitted by Cath on Mon, 10/31/2011 - 10:25.

Kitty, i am so sorry to read that your appointment was disheartening. It is so hard to fight this unseen enemy all day and all night with no chance to really attack anything. I am keeping everything crossed for as little social impact as possible for them both. It is a hard hard road and I do think while it gets a bit easier for us to cope with their symptoms as they get older, the reason for this is that they have to bear the brunt of it more and more. Ruby is very sore at the moment due to a cold/cough she has caught and we are back to long evenings followed by rotten nights. Cuddles aplenty is my best strategy. Actually, scratch that - it's the only strategy. I'm going to get in touch with Dr Shah this week and ask if he thinks some azythromicin might help with the current grumbles. Didn't help much last time, but I think I'd give it another few goes before I write it off completely - it's only a 3-day course, after all...

xxx See you sooooon.

Cath - little one born 2009 has inflamatory bowel and colitis...

Submitted by Kitty on Sun, 11/06/2011 - 21:05.

Hiya, thanks for your post. sorry been so slow to reply, been manic here the last week or so the kids have been off school on and off wtih stomach pain and we've had hospital appointments etc.

The boys seem to be flaring up a bit and sleep is out the window and they are really grumpy. they had their first winters dose of azithromycin thurs/fri/sat so i'm hoping that may help. have you heard back about azithromycin for Ruby? i have to say, although i hate giving it to my boys so often (every fortnight) and it can upset their tums, we really did have better winters when they were on it - last winter was a mare and i am guessing it might have been due to the lack of azithromycin. To be honest - they ended up with about 5 sets of antibiotics anyway as kept getting respiratory infections so not that many less than they'll be getting prophylactically with the azithromycin (which will be about 9 sets).

Had interesting appt with a hearing therapist about our 5 year olds tinnitus - she said its been brought on by stress. i felt sad that the stress of his gut problem is causing other issues - i wish there was more i could do. I think i underestimated the link between body and the mind - even in children it is strong.

How is ruby doing at the moment? Is she still suffering?

looking forward to seeing you for lunch.

Kitty

xxx

Submitted by Cath on Mon, 11/07/2011 - 10:20.

Ruby's okay - tummy bug has got hold of her in the teeth of this bloody cold and cough which was really nasty, but we're chugging along.

We are thinking we might give the azithromycin this week or we might try and get away with this lot without it (took about a week to get the damn stuff!). When you say it causes tummy problems, what sort of thing? And is it just for the three days, or do they linger?

Sorry the boys are now not sleeping. Grim grim grim - you must be on your knees.

Also looking forward to next week - xxx

Cath - little one born 2009 has inflamatory bowel and colitis...

Submitted by Kitty on Mon, 11/07/2011 - 11:41.

hiya

it can sometimes cause bit of an upset tummy - its not too bad though and usually doesn't make them go more often. we dont' find it lingers, we find it just affects them when they are taking it and maybe the day after it finishes. i am trying to give prebiotics as soon as they come off it to settle their tummys.

so sorry she is ill still. is she picking up one thing after another?

Kitty

Submitted by Cath on Mon, 11/07/2011 - 12:46.

Hi Kitty

Thanks for that - really useful to know what you have found with azithromycin. Dunno if it's really picking up lots of things. She hasn't been ill at all over the summer and hasn't picked up lots and lots of things before. My friend's little one who i think gave Rube the cough, and her husband, both had this cough and cold immediately followed by a tummy bug. We didn't see them when they had the tum thing, but it followed in exactly the same short order. Perhaps these two germs are best friends...? Gah!

xxx

Cath - little one born 2009 has inflamatory bowel and colitis...