Easter, not for my GutsyKid!

So with Easter approaching and my 12 yr old son hitting his 7th week on Exclusive Enteral Nutrition, it was time to wean him back on to solids. He was hopeful he might be allowed a bite of chocolate after the weeks without solid food just a boiled sweet or two for a treat, boiled 7up and the odd chicken stock.( On the upside his crampy painful stinging abdominal pain had subsided while on EEN)

Day 1: March 28th Boiled basmati  rice and a little boiled chicken, fast forward 12 hours later, we collected him from a sleepover in a friend’s house at 3.30am screaming in agonising pain. He threw up and had chronic diarrhea for 4-6 hours, finally falling asleep in my lap on the loo, when the diahrrea had subsided. (No he didn’t cheat)

We called OLCHC (Our Lady’s Children’s Hospital Crumlin) at 4a.m. the G.I. doctor on duty said it was an ‘A&E trip’ or a ‘wait and see’ approach (which it normally is with IBD kids), he didn’t have a temperature so we cleaned him up and laid him down. Normally we wouldn’t panic but what he was throwing up was (sorry) brown globs, we were afraid of bleeding in his gut somewhere!

Day 2: We called OLCHC to talk to a nurse next morning and were told there was no clinical G.I. nurse on duty until April 2nd by a very disinterested person attending the phones. I asked her to get me somebody on the G.I. team and when I finally got to talk to (what I presume was a junior doctor) who had to take all of his details from scratch YET AGAIN (I know you’ve all been there!) she said she would ask the G.I. doctor on duty about him. Again the same mantra of an ‘A&E trip’ or a ‘wait and see’ approach was reiterated.

HelpWhat’s all the fuss about you might ask? Why didn’t you go to A&E if you were that worried I hear you say…he’s been on immunosuppressants for quite a while and the thoughts of exposing him to worse symptoms than he already had, kept us away.

This failure by OLCHC and the H.S.E. to cover Clinical G.I. Nurses on 1. Sick Leave 2. Maternity Leave 3. Holidays is going to hurt one of our children, seriously is that what it is going to take for them to stop ignoring these kids/teens?

Day 6: I received a call from the nutritionist, who enquired after Tadhg’s progress I filled her in and told her it was probably too much too soon (still assuming it was food)…

Night 6: Having received his Metoject shot Tadhg woke up at 4.30am with the same chronic diahrrea and vomiting which lasted only 3-4 hours this time. (still no temperature).

Day 7: tried to contact a G.I. nurse all day but got the answering machine, I left a message.

Day 8: Missed a call from Crumlin while on the road today! Damn it I’m so frustrated now I could scream. (Tadhg is ok, he’s eating rice with no problems)

I have no doubt he will end up in A&E next week after his shot, but we won’ go quietly!!!!







  1. Day 11: Ok drama over for now 🙂 I spoke with the G.I. nurse on duty, who says ‘we should have went to A&E’ as that is the ‘system in place’ but understood why we didn’t. Having ranted at her a little I did feel guilty but reassured her it was the ‘system’ I was angry at and not her! She advised leaving the shot until we saw the consultant today (Day 15).
    It has been 2 years since Tadhg’s last scope etc. so he will have an ‘M.O.T.’ (no more methotrexate for now) with tests to investigate how the disease is really doing, after that we’ll have a new plan, to be continued…

  2. meggie moo

    Hi Rachel,sorry to read about your little boy. My daughter has been on the down slope since last November after having a fantastic year before,it was to good to be honest..but since November she has been in and out to hospital n been on alot of steroids which she has become immune to.. we on the other hand cant complain because she gets excellent care from Dr.Mahony in Limerick. He is our saving grace. All it takes is a phone call to his lovely secretary Marion and we are seen to straight away.. We are in hospital as I write this,having a scope on Tuesday and hopefully starting new meds on Wednesday.. Its awful seeing a 13yr old child in so much discomfort and pain..she has missed so much school and is gone very into herself. We are sick to our stomacks each day seeing her so miserable and acting like a 80yr old women… please god we will get her back on track and happy again.

    • Hey Grainne, sorry to hear that but it’s great she has access to such good care. I have found it’s so easy to forget they’re sick kids when they get remission from IBD for a while. We’re waiting for an appointment for Tadhg’s scopes and MRI with any luck the waiting list is not too long this time but I’m happy he’s in Crumlin and not Tallaght Hospital where he started. He’s doing great off everything for a bit and almost back to his full diet (gluten & wheat free), but it doesn’t usually last:-( I can send you some links on the ‘Home Tuition’ if your daughter is up to it, we have found external resources such as the child psychologist, nutritionists, really useful in proactively heading off the problems that can crop up such as, self image, being different from their friends and issues with food/diets.
      There are many other parents and kids in the same boat and if you would like to be put in touch with someone in a similar situation with a daughter in the same age group just drop me an email. info@gutsykids.ie

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