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Irish Kids Out There?

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OrlaRi

Hi,

Just wondering if there are any Irish families, who are on here? We have a 7 year old girl diagnosed with Crohns since end of August 2018. She is just finishing 8 weeks of EEN, so we have it all ahead of us :sign0085:

Would love to chat to others in a similar boat, or who have been here before us!
 
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RobShamrock

Hi Orla, we're in Clare our son diagnosed around October last year he was 13 now 14, we also did EEN, any questions or if you need to Message us feel free.
 
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OrlaRi

Hi RobShamrock,

Thanks for your reply. I didn’t find this area again for a while. Is there any Irish group out there, like a Whattsapp group or something where people meet up? I joined the gutsykids Facebook group but there doesn’t seem to be much going on, on it. I asked Crumlin if they’d make my number available to other families in the midlands, but they weren’t interested & seemed to suggest I should start a support group-as though I haven’t enough on my plate!!

Did you manage to link up with anyone else in your area? Is it that the treatment is so good, that IBD just blends in with the rest of life after a while & you don’t need to talk about it anymore?

We’ve just had our 1st consult after 8 wks of EEN & now she’s been put on 125mg of 6MP. Did you also go that route & if so, what symptoms did you notice? My girl had a v bad experience of her 1st blood test, so repeat bloods was a major meltdown 😢

Is your boy in remission since or has he had a flare since? It’s all so frightening not knowing what will happen.

Sorry for the rant 🤣
 
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RobShamrock

Hi Orla

My wife was also keen to find some support but with no success.

I do think Gutsy or someone had regional meetins listed at one time or another

So we've been going along solo. Yes the treatments are good, but I cant honestly
feel like it will ever completely blend away with them so young and so many worries.

WIth our son being a bit odler we've not had any trouble with the needles and blood tests etc.
He's be a revalation with his bravery with the needles. Doesnt seem to bother him much
last visit 3 different time before they got a good line.

Our sons official diagnois 1 yr anniversay is next week., In fact he spent last mid term break
in the regional hospital and EEN started then, a struggle at first but then I think again his age
helped and the realisation about it helping kicked in, that boy put 8 to 9 of those ensure
plus chocolate drinks away daily.

They wanted him to have food for christmas so we came up a few days short of the 8 weeks
and started 6mp, he wont do tablets of any sort so it was liquid 6mp, we believe it made him
sick, vomiting started and it was bad vomiting, we wait a few days try 6mp again, vomiting
would return. Some felt it may have been a flair, the meds, a winter tummy bug, but we knew
it was 6mp, We stopped and the local consultant consulted with Dr. Hussey in Crumlin
and we started Remicade infusions in Feb. this year.

Improvement has been remarkeable, weght gained over +12kg, back playing sport after year off
In remission, no flares, so its good times at the moment and long may it last.

What symptoms gave you guys an incling something wasnt right?

Any thing else we can help with let us know
 
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OrlaRi

Hi RobShamrock,

I sent you a private message a few days ago but can’t figure out where to look at private messages! I’d say it’d be easier on a desktop.

Regards,
Aoife
 
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RobShamrock

Hey A, didnt get any private message, yeah, I dont use on phone myself, feel free to try again. Mid Term is over and that a year in the bag now, cant believe how quick its come and gone. Lots has happened
 
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