Likely induction protocol for 15 yo

[Livvies Mom]

I just posted on "Your Story" (duplicated below) and I have a few questions I will post separately.

I have read about the various induction protocols and am wondering which would be the most likely choices for my daughter? ( I want to study them so I can ask informed questions)

I understand that it may take a couple months or more to achieve remission, and that every case is different, but how soon might I expect her to feel well enough to resume normal activities after treatment is started? Will she gradually improve or get worse before she gets better? (She REALLY wants to go on a planned trip on Nov 7, but right now she is too sick to even go to school)

From her CT scan, does she sound "mild" moderate" or "severe"

I apologize for duplicating my "Your Story" post below, but the link was rejected since I am a new member
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My 15 yo daughter Livvie has been experiencing periodic nausea and controlled loose stools for several months, along with mouth sores. She lost 15 lbs in 4 months. She was diagnosed two days ago with Crohns after her CT scan:

"CT findings compatible with IBD, most severely affecting the terminal ileum but also affecting the more proximal ileum. Bowel wall thickening and mucosal enhancement also present within jejunal loops and involvement of the jejunum is suspected"

We have been in limbo for several weeks waiting for various appointments, referrals and test results, and in that time her condition has declined quickly as we have tried various remedies and diet protocols that did not work well for her (Prilosec, BRAT diet, Ensure, etc). The Prilosec caused vomiting and made her drool badly. She despises the Ensure/Boost and won't drink it. The BRAT diet just seemed to make her feel weaker and weaker. For now she is back on regular food, and we are just trying to make wise choices and keep notes of how each food affects her.

We got the diagnosis by phone on the 15th, but we are still stuck in limbo until the 23rd when she returns to the GI doc. She is scheduled for colonoscopy and endoscopy on the 21 and I think he is waiting until after that. Hopefully on the 23rd they can start some kind of treatment.

I'll be posting a LIST of questions on a new thread. Thank you'll so much in advance!

 

[my little penguin]

Glad you found us sorry to hear about the dx.

You really need to wait for the results of the scopes/biopsies .

I am going to tag Dancemom since she is in Florida as well.

Basically it tends to take about a year sometimes two to get back to normal.
The key is finding the right med.
What might work for one kid may not work for the next .

Some docs start from the drug pyramid bottom or top
Bottom up
5-ASA ( pentasa , asacol etc) - not very useful as a monotherapy drug for crohn's
Most 5-ASA are used with other therapies -

Next up immunosuppresants ( 6-mp, Aza or Mtx)
6-mp or Aza take about 3-6 months to become effective.
Mtx takes about 8 weeks

Biologics are the top of the pyramid
These are remicade , humira, cimzia etc..,,
They have been proven to reduce the natural history of crohn's surgery risk when used within 3 months of dx.
Biologics takes about 6 weeks to work for remicade
3-4 months for humira


Just take it one day at a time

 

[Livvies Mom]

Thanks so much. The scopes are the 21'st and the GI appt. is the 23rd. The scope results should be in before her appt, but I don't think biopsy results will be ready. Will they have to wait for biopsy results to begin treatment? It has been several weeks already of testing/waiting and we just want to at least start down that road of treatment.

 

[my little penguin]

They can have the biopsy results in a day if needed but typically its a week.
You can't start treatment until they know exactly what they are dealing with
Biologics require all immunizations are up to date plus a test for tb first.
Immunosuppressants 6-mp /Aza take a few weeks to start since you need to have blood tests sent to California first for TGGN etc to see how her body processes it which determine the dose
Waiting is hard

 

[Jmrogers4]

For us they prescribed prednisone the day of scopes as they were 99% certain it was crohn's based on visual but needed biopsies for confirmation. We also talked about what our maintenance med would be and that we would start as soon as blood tests came back. When biopsies came back confirming Crohn's about a week later, GI also called in Rx for the Azathioprine to be started that same day. He was already feeling better after a week on prednisone so the idea was by the time he was weaned off pred the Aza would take over and keep everything under control.
It took a while messing with dosage of azathioprine for my son to reach a theraputic level and while we thought we achieved remission on it after about a year he did not grow or gain weight the entire time he was on it so simmering inflammation was going on in his small intestine. Although after the first couple months on the correct dosage he felt well enough to do the things he wanted most days.
He started remicade and we were lucky he felt fantastic directly after his first infusion and has been every since then so for us he felt well enough to do everything immediately but really started growing about 4-6 months in so I would say that is when we really achieved remission.
As far as mild, moderate and severe it can phase between them many times but for most children it is severe in that it can change fast and go downhill quickly.

 

[Brian'sMom]

When will remission come? That's the million dollar question!! I wish there was a med schedule; "Take this... you'll feel better on _____ date." So sorry you had to find us... But glad you did. Hang in there. Hopefully your child will feel good soon.

 

[CrohnsKidMom]

Welcome to the forum, but sorry to hear of your daughter's illness. My son was dx'd last yr at age 8, with moderate CD mainly involving the jejunum. For us, no treatment began until those biopsy results were in, even though they had been pretty sure it was CD all along. Until treatment begins for your daughter you probably shouldn't do too much to treat her, just in case further tests need to be done. You don't want to mask anything. But, you could try a low residue diet to help reduce her discomfort-soft cooked veggies, low fibre bread, no seeds/nuts, etc. And maybe omit lactose for the time being. As far as if her CD is mild, moderate, or severe, those classifications might be rather subjective. When I asked our GI, he said, "well, your son doesn't require surgery, but it is going to take some time to get it under control. And then he is going to need ongoing medication to control it, so I guess he's moderate". And when will remission happen? That's different for everyone. The initial treatments are usually either steroids (ie. prednisone) to treat the inflammation, or formula feeding (EN/EEN, sometimes with NG tube) to rest the intestines to allow it to heal. A maintenance med will also have to be introduced. We went the Prednisone route and my son started to feel better within a couple days. It took about 8 mos to achieve full remission, with some bumps along the way, but he got there. Your daughter will too. Take care.

 

[Catherine]

My daughter was dx 16, just prior to the start of year 11. She went back to school a week after starting prednisone.

She probably should have stay home longer, I managed to keep her home two days after she wanted to go back at school.

She was also a very sick girl at dx, she had lost 12kg in the two months prior. Everyone is different.

 

[Livvies Mom]

Thank you so much for the replies. Her Endoscopy was yesterday and the phrase he used in the report is "severe in severity", but orally he said "very treatable". He said he is going to put a rush on the biopsies and hopes to have results in time for our big appointment tommorrow. We were told that we will meet with an entire team to set up her care plan including a dietician and social worker to help with a 504 plan for school.

We are hopeful.....

 

[CrohnsKidMom]

It sounds like the GI team is very proactive. I hope your daughter starts feeling better soon.

 

[Maya142]

It does sound like you have a great GI! Hope they get her feeling better soon!