Need advice for newly dx'd 16 yr old daughter

[greypup]

My 16 yr old daughter was recently hospitalized w/severe stomach pain, high fever and passing blood w/ bowel movements.

MRE results indicated an abscess, bowel to bowel fistula and phlegmon. She was put on IV zosyn and TPN for three weeks.

Yesterday we rec'd results of follow up MRE. The abscess, phlegmon and fistula were healed and not visible on MRE. They discontinued her zosyn and want her to reintroduce elemental foods and liquids and gradually move off TPN.

We are SO relieved to have dodged surgery. SO thankful.

Now we are trying to understand how to get back to eating. If she didn't have much reaction to foods before this event, then how do we know which foods affect her negatively? She's been gluten free for 8 years due to gluten intolerance.

In six weeks they want to do colonoscopy and endoscopy to biopsy, etc. Until then the doctor is trying to determine how to treat. She mentioned the possibility of remicade.

I am seeking information and/or advice if anyone successfully treats this w/out the big drugs.

I've been reading on this forum for the past few weeks and several other books as well. I feel like I understand the spectrum of this disease but I don't understand the likely trigger(s) or how to maintain remission w/as little drug intervention as possible.

TY for any help you can provide.

Linda

 

[Amy2]

Peptamen or Peptamen Junior for kids — Contains protein that has been partially broken down, making it easier to absorb. This may be useful if portions of the digestive tract are inflamed or have been removed. This formula also contains MCT oils that are absorbed more easily, decreasing the undesirable effects of fat malabsorption (diarrhea, gas and bloating). This formula is not highly concentrated, which also may help decrease diarrhea. An 8 ounce ready-to drink can provides 240 calories, 10 grams protein; made by Nestle. Recommend adding flavor packets to improve palatability.
Peptamen 1.5 — Same composition as Peptamen but offers more calories per can. An 8 ounce ready-to-drink can provides 360 calories, 16 grams protein; made by Nestle.

My son drank only Peptamen (8 1.5's per day) for so far, 5 weeks + 1 day...going to do it for 6 weeks, then follow SCD and taper off his Pentasa and Prevacid if he keeps doing well.

 

[greypup]

Good for you and your son that he is willing to do SCD!

I'll check out the Peptamen. Do you buy that online only?

Linda

 

[my little penguin]

EeN is used to induce remission but can not maintain it.
It can be used instead of pred or in combination with pred.
Food typically does not induce flares in Ibd.
It can however make a current flare worse.
The only way to know would be to get her into remission and then keep a log for a few weeks before you pull anything.
Scd has been used with some success in ADULTS with Ibd .
Some use it as monotherapy but most use it in addition to traditional meds.
Child diagnosised with Ibd tend to have or develop more severe Ibd .
This is due to the fact that a child's disease changes , spreads, and worsens over the ten years from dx. This is not typically seen with adults .
Some gi's believe in top down where you use the stronger drugs first ( like remicade)
This calms inflammation and keeps as much of the bowel healthy as long as possible.
Other times they use remicade because they are trying to avoid surgery .
Most children need at least an immunosuppresant who have crohn's .
These would be 6-mp or Aza . These however take 4-6 months to work so....
Pred or EEN is used until the 6-mp kicks in.

A limited ( very limited few) amount of children can keep it under control through means without meds.
I would discuss the options and risks with your Gi as to what to expect if you did xyz vs abc .
Each treatment has risks and they are all scary in the beginning
BUT having your child back is worth it.

Wish you the best of luck

 

[my little penguin]

Ask your Gi for a script for peptamen through their durable medical equipment suppliers. Then at least there is a small chance your insurance may cover part of the cost.

 

[Amy2]

Anecdotal I know, but our adult daughter had much more severe symptoms when she was diagnosed, than did our 16 year old son, which is why he/we feel it is reasonable for him to give SCD a try.

 

[Blarsen]

greypup,
That sounds incredibly difficult, I'm sorry your daughter had to go through this. Its no fun at all. It sounds like you have a pretty decent grasp on the disease. I've been diagnosed for 8 years now with crohns and had many flares and many many different meds. Your last statement is one of the best i've heard " how to maintain remission w/as little drug intervention as possible." The limitation of drug intervention is so important. The doctors will be so quick to put her on an immune suppressant and unless she cannot gain remission without de-stressing, avoiding trigger foods, etc. I would seriously search and exhaust every other option before the immune suppressants, no one gave me an option or opinion and i'm paying for it now big time. I really hope that helps you make a decision, good luck!
Brandon

 

[ChampsMom]

Hey Greypup...

Sorry to hear about your daughter... what a relief to avoid surgery!! As you have read there isn't one fix for everyone and not *every* child (or adult) will experience the same course of ups/downs with their disease.

I pray you find what works best for her!!

Good luck! God bless..