How to Expand Food Options for a Child?

[OntarioMum]

HI Jennifer,
So relieved to see your post! The flu has done a number on my daughter and I'm overwhelmed with worry. Our daily diet looks a lot like you've described. How / what steps did you take to expand the food options? Walking in a grocery store is overwhelming me. She (and siblings) react to and don't like so many foods. Can't have bananas here. She's starting to say she doesn't like rice anymore. Some pastas bother her tummy. potatoes bother her tummy. It feels like we've been on the "rest the tummy" diet for so loong that I just don't know what or how to introduce anymore. Any suggestions?

 

[CarolinAlaska]

Maybe your daughter needs a prolonged time of EEN to get her to remission so she can tolerate a wider spectrum of foods. This sounds so familiar. We are trying the EEN now with my daughter, but so far after 2 weeks she still hurts even with the Ensure... I'm hoping that in a week or so it will finally be healed enough to stop hurting...

 

[OntarioMum]

Thanks Carol. We now have another Dr. Appoint. booked. Daughter had a much better day today. Yay! I now need to start making the jump from safe foods to a wider range for better nutrition and weight gain.
Sorry to hear of your own stuggles with daughter's tummy pains. My daughter had a lot of trouble with the Ensures but they really did perk her up. Good luck!

 

[my little penguin]

The best way to gain is through formula for these kids.
DS still takes 3-4 peptamen jr a day and is at the 71% for weight for his age.
Compared to the 20% fir weight he was prior to EEN.
As far as stomach aches daily - if your in remission there should not be any symptoms.
Have you discussed the psi with your Gi?

My son still had abdominal pain when he was on EEN for 9 weeks with just peptamen jr.
It didn't matter what food he ate the pain was still there ( we tried it all - free of this and that we tried it)
Once he got on the right meds and had time to heal all symptoms including stomach pain went away.

Hugs

 

[OntarioMum]

so, my apologes, I've been reading some of the threads and feel a little guilty asking for help for minor issues.
So.. remission means no symptoms at all?
My daughter will be fine for a day or two but will then randomly mention something like tummy pain (burning) or skin rash (she gets weird blisters), or just a "yucky" feeling.
fatigue complaints tear me apart.
And then she'll be fine for a couple more days. Over all, it hasn't been enough to have made me call the doctor, but it means I haven't yet found a comfort stage and am constantly on alert for other symptoms that might help add up to something to follow up on. And I'm fighting so much guilt that maybe I keep putting something in our food that's aming this happen.
She was recently hit with a gastro-type flu bug and ended up needing rehydration in the hospital. She had a lot of pain when the doctor pushed on the area where her crohn's pains have been. 9/10
She was then fine for a few days but had a slower than normal recovery - weary, lack of appetite. Went to school and later that morning called home in a great deal of pain 7/10.
Said it was like someone was making balloon animals in her tummy and it felt like the ballons wanted to burst. This is a new description for us. But then the very next day, after a quiet day, she went off to school and says she's now fine.
This is such a roller-coaster. I don't want to use the prednisone, but am not sure if these are all "one-offs" or if she needs help.
Very glad we'll have a doctor appt soon. Worried that I may not be able to present a complete picture because all I seem to get from her area fragments.
*sigh* thanks for "listening"...

 

[my little penguin]

What maintence meds is she on?
Have her rare her pain 1-10 then track it plus location.

This app helps.

https://itunes.apple.com/us/app/myibd/id444728980?mt=8

Track things

Ds started with abdominal pain once a week then it slowly progressed to once a day till finally it was all day everyday .

Your Gi should instruct you what warrants a call.
I do call for new abdominal pain especially since your daughter is rating it so high.
Since obstruction is always a possibkity with these kids .

 

[OntarioMum]

Good advice - Thanks!
maternity vitamin and pantaprazole with instructions to start prednisone when needed and to let them know when that happens.

 

[my little penguin]

Since she is not on maintence meds you really need to call first thing Monday.
Crohn's tends to be more severe the younger your dx.
So kids tend to need immunosuppressants (6-mp or Imuran) at least or biologics(remicade or humira)
5-ASA only work for about 10-20% of crohn's patients so not worth it.

 

[CarolinAlaska]

OntarioMum, what treatments has she done and how did they go? Your daughter sounds like mine, and that is her normal Crohn's: cyclic pain. My daughter has not yet reached remission... I don't even know what that would be like, and sometimes I wonder if we'll ever get there... I think Crohn's has been in our life so long, we just thought it was her. She was just diagnosed in January. I do have hope though, now that we know what is wrong with her, that she will be healed, or at least put into remission...

 

[OntarioMum]

Our big fright came last summer. She was not able to keep any food down at all due to pain and ended up in the hospital. The doctors were fabulous and at the end of many tests, she came out with dx of Crohn's in the Jejunum with some other areas showing some indicators. A steady course of prednisone in the fall cleared that up and she's been doing very well since then, with only having needed to go on pred. once since then.
She's now recently started to mention the one-offs burning pains again, but not often enough for me to think we need to do pred.
That said, however, she's experiencing more fatigue than before and with her recent flu and the pains at that time, I'm starting to fret.
She's 14 and I want her to start taking control of this so she can learn with our help, how to watch for signs and what steps to take, so I ask her fairly regularly about her tummy pains, esp. since the flu last week, but I also don't want her to think of herself as "ill" because of crohn's.
How to balance between preventing fatigue and also learning as a teen-soon-to-be-adult, that you also have to push yourself sometimes?

 

[my little penguin]

Pred is not a long term soln it should only be used for flares .
Very rarely .
Are they monitoring her blood work ? Crp sed rate etc?

Fatigue is a symptom of a flare as well as the abdominal pain.
This is not something you work through.
This is the bodies way of signaling inflammation is still on going and causing damage.
Pred reduces the inflammation but does not stop it from coming back.
Crohn's damage can also be silent and deadly.
I don't say this to scare you but leaving disease untreated or under treated is really not an option in crohn's . Being med free is not an option.
Some use EEN in place of pred but still need a med.
Once scars , strictures or narrowing has formed they can not be undone.
Disease tends to spread in children for at least 10 years from dx.
Unlike adults whose disease stays where it was found.
Meds give you the best chance of keeping the disease from progressing and keeping your child's gut the healthiest the longest.

Please talk to your Gi.
And try to get a second opinion Gi

 

[OntarioMum]

I very much appreciate your advice and yes, you've scared me, especially regarding under-treating and the spread possibility, but this also helps me not to feel that I'm "bothering" the doctors by going in without a clear story.
Today she woke up feeling 100% fine. go figure.
Yes, her bloodwork is being followed and we have the appt coming soon. If she squeaks about anything, I will put her on the pred. until the appointment.
I do appreciate your words on under treating and the possibility of spread. I wasn't aware of this and I'll ask about maintenance.
Carolin, I feel the same way about "we thought it was just her". It's a big mental shift.
Best wishes....