No Easter for our Gutsykid!

[rmk]

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 E.E.N.)

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, (Tadhg normally suffers with constipation) finally falling asleep with his head 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.

What'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 (Metoject) 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?
oo:

 

[Devynnsmom]

I'm so sorry How is he feeling now? I have no experience with E.E.N. I hope he's feeling better real soon.

 

[Niks]

Poor thing. I really understand not going to A&E! Weekends and holidays are a waste of time. I really hope he is a little better and you can get the help you need tomorrow.

(((HUGS))) :ghug:

 

[rmk]

Thank you for your support, he's a lot better today, very thin, but had 6 of his Ensure Plus shakes and a bowl of rice, hopefully he will sleep tight. Tomorrow we can reach the clinical G.I. to find out what's next.

 

[CarolinAlaska]

We're right behind you in the reintroduction of solids. Was your son symptom free when you started the reintroduction? Our daughter finishes week 8 tomorrow and she is symptom-free. We're experimenting now with formulas to see what she can drink and tolerate. Hopefully soon we'll have her NG tube out and start doing it all orally again.

I'm sorry your son had such a bad first trial. I hope he had a good night.

 

[rmk]

Hey Carolin good luck with reintroducing solids, this was Tadhg's second time on EEN, I think we introduced too much too soon! Last time we introduced rice for 4 days and cut the drinks down by 2 for the first week. We gave him rice and chicken this time (following the hospital nutritionist's booklet).
We''ll just take it a lot slower this time. The EEN alleviated his symptoms for a good few months the first time but he ended up on steroids when they came back, he is on Metoject (methtrexate shot) and folic acid, one a week, (everyone is different though) that doesn't happen to every kid. How is your daughter managing with the NG tube is she very young?
He is symptom free at the moment but his small intestines are inflamed with ulcers, it just give his system a rest and builds him up.
He had a small bowl of rice yesterday and an organic gluten free chicken stock cube (half one) made as a broth, so far so good, fingers crossed!
Hope you have a good week,
Rachel

 

[rmk]

:ghug:

 

[CarolinAlaska]

Hey Carolin good luck with reintroducing solids, this was Tadhg's second time on EEN, I think we introduced too much too soon! Last time we introduced rice for 4 days and cut the drinks down by 2 for the first week. We gave him rice and chicken this time (following the hospital nutritionist's booklet).
We''ll just take it a lot slower this time. The EEN alleviated his symptoms for a good few months the first time but he ended up on steroids when they came back, he is on Metoject (methtrexate shot) and folic acid, one a week, (everyone is different though) that doesn't happen to every kid. How is your daughter managing with the NG tube is she very young?
He is symptom free at the moment but his small intestines are inflamed with ulcers, it just give his system a rest and builds him up.
He had a small bowl of rice yesterday and an organic gluten free chicken stock cube (half one) made as a broth, so far so good, fingers crossed!
Hope you have a good week,
Rachel

Hi Rachel. Our daughter managed with the NG tube fine while it was in, but the getting it in was problematic - she ended up having to be put under. If she has to go back to tube feedings, she'll likely need a MICkey. Yesterday we pulled the NG tube because she'd had it in too long and right now we're going entirely orally. She is 13 (almost 14). She is also symptom free, EXCEPT has over the past 2 weeks developed a foul smelling gas, that only was made much worse with a glass of apple juice... I think it is the formula. Her formula now has "Prebio" which seems to be the change that happened that started the foul gas... poor girl. I'll try to switch off that kind of formula and see if we can get that under control before adding food to the mix.

 

[rmk]

hey Carolin,

it's great that Jaedyn could tolerate the NG tube at her age, it must be tough. It is probably the pre-biotic, can you get all of the flavours in the shakes (Ensure Plus) and Fortijuce (Nutricia juices)? I know Tadhg would not have made it without the variety, we had to look the up on the Abbott and Nutricia websites to make sure the pharmacy would order them in.
Tadhg is on rice and rice noodles down to six shakes a day now, he's going well. (boiled chicken today)He had the same reaction with vomiting and diarrhea after his Metoject shot on Wednesday night it looks like it's time to try something new! (The food was coincidental on the same day as his shot last week).
Apple juice can be quite acidic too but sometimes one kid can tolerate foods/drink that another cannot. Tadhg has his appointment with his consultant, next Friday, hopefully no drama til then.
Believe it or not we have still had no contact with the G.I. nurse.
Let me know how you get on, it's great to compare notes with another parent.
have a good weekend, Rachel

 

[CarolinAlaska]

Thanks Rachel. Apple juice was the first nonformula food she'd had in almost 9 weeks. She went with us to a restaurant and it was the only thing on the menu remotely doable. It went okay, but she did have a little diarrhea and increased gas... I think we'll stay clear of it for awhile yet. We don't get much variety in the formulas. It is frustrating, because the cases don't offer multi-flavors. Hopefully soon we can add flavors to the vanilla to make them more tastey.