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Our Story: Tadhg's Mom (Rmk)

In November '09 Tadhg started to have bad stomach pain, he always suffered with constipation on and off (really bad when he was a toddler) despite a really healthy diet, (I was always one of 'those' moms') the irony still hits me now. He had blisters on the back of his tongue since he was a toddler, we were told they were 'geographic blisters', nothing to worry about and a really bad eczema rash, Tadhg would get over anxious about simple childhood stuff over the years which we would try to stay on top of but now I know they are symptoms of a flare up.
They did a colonoscopy and endoscopy in Tallaght Hospital AMNCH in Dublin and the test was inconclusive, they wanted to put him on meds but I was horrified they wanted to treat symptoms when they didn't have a cause, we turned them down and went to a nutritionist Joe Fitzgibbon who by process of elimination and no ulcers back then put him on a coeliac diet. It worked wonders for a year, he was regular, healthy and had no pain. In November 2010 things got bad and by January 2011 Tadhg was in and out of A&E 3 times. At night he would scale the room like a trapped wild animal literally climbing the walls in pain, during the day he looked fine? They took out his appendix on January 4th because they hadn't read his notes from the year before, (under investigation) and sent him home in more pain then he went in with. During the laparoscopy they found ulcers surrounding his small intestine.
During his time at that hospital he was treated like a spoiled child with a bad diet and constipation I ended up screaming in the halls when he was given about a weeks worth of laxatives over two days and in chronic pain 'is this normal, how can this be normal'.
February 16th, he finally had a colonoscopy by a specialist GI called in from Crumlin, Dublin, Children's Hospital OLCHC, and he said if it was ok he would take him under his care down to the IBD clinic Crunlin. We were relieved someone was going to help Tadhg at last.
The first treatment they chose was EN for 8 weeks evrything was great Tadhg got to sleep at night and so did we:) When he was slowly going back on food after a couple of weeks the same syptoms came back, we tried every combination with the drinks, 1 day on 1 day off, 3 days food 4 days drinks he was doing alright til August when it really flared up again.
In September they put him back on the EN exclusively and introduced Prednisone and 6 MP, which we agonised over and got some great support from this forum.
After a couple of weeks really bad abdominal pain and he was in A&E again the difference at the children's hospital was amazing, they treated him with courtesy, care and like a child.
His Amylase level was high and the GI (Anne Marie Broderick) on duty said it was more than likely the 6mp, he had an xray and an ultrasound a million blood tests and after a couple of days he was back to normal, Tadhg was more concerned that he had missed his County Final in the Gaelic football (GAA).
Tadhg went to see his regular GI Dr. Seamus Hussey, he wants us to try the 6MP again says the levels were probably high in his system so after his blood test next Friday we have to make the decision again, I don't want to but my husband wants to try it, my gut instinct is that Tadhg will end up in A&E in pain again.
He is so strong in character I am amazed by him, he carries on as normal despite cramps, pains and Perthés in his right hip which cracks out of the socket every so often, which gives him agonising pain.
I watch him in his hip hop giving his all and try to choke back the tears, because I know how hard he fights every day.
We also have a 4 year old daughter Shauna, I watch her like a ticking time bomb, even though I know it won't necessarily happen to her too.
When things are good I have great hopes of new discoveries, stem cell treatments and remission that will give him his childhood back. When things are bad I fear he's slipping through my fingers and I can't fix the pain he's in that's what hurts the most.
Our little family unit is strong happy and full of love so the good thoughts prevail.
I am so glad I found this site, the Irish and UK ones are not as good yet they are in their infancy, so if you don't mind I'll tag along here. :goodluck:

Rachel & Tadhg


Crohn's 35

Inactive Account
Hi there :welcome: my what a horrible feeling it is to have your child so ill. I can't imagine being a parent to a chronically ill child. My daughter (her name is Shawna) when she was little and got the flu or a cold I was overwrought with grief. Yes IBD can run in families but it isn't common to have it at such a young age.

Crohns is so hard to diagnose and I too had my appendix out and they said that was all it was...only a week or so later back in the hospital. That is when I had my first resection. Best thing I ever did.

Prednisone works but we find it is just a "bandaid" until another med kicks in. 6mp I cannot take, I react to it. Has there been any other family members in YOUR family or your husband's family with IBD? Your son is just adorable ...nice bird too lol.
hey Pen, Thank you, we don't know of any family member with Crohn's to date, but we'll probably go with the 6MP again, every alternative is just as scary so fingers crossed. He loves the Birds of prey walks, we try do one every summer :) keep well,

Crohn's 35

Inactive Account
I see your point. I thing I have learned is most of us have to change our meds from time to time... I think our body adapts and no longer works. Just my opinion and experiences. NO one likes drugs but no one likes pain either, it really sucks. BTW you are a great mom!!
I totally agree with you, I wish I knew more, but I'm learning and I feel the disease mutates and adapts to everything new we try now if we could just find a way to fool it for a while, Thanks again :) Rachel


Your Story Forum Monitor
Hi Rachel and welcome! Boy, what a story. I feel for you and your little guy (boy, he's handsome!). Sadly, there are lots of parents on the forum who have children with IBD. You may want to check out the Parents of Kids with IBD forum. I think you'll find it helpful.

I am glad you found good doctors who treat your son with courtesy and care. I sure hope 6MP works better this time around, and Tadhg starts to feel better. I wish him all the best. Please keep us posted!