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