Newly diagnosed 7 year old

[Chronsmommy]

My 7 year old daughter was just diagnosed with Crohn's. She got a bad virus back in March of this year and had some diarrhea with that sickness which never went away. Her other symptoms included lack of weight gain, anemia, blood in the stool, nausea, random fevers.

She had a colon/endoscopy which revealed lesions in her stomach, small intestines and colon. The biopsies further confirmed Crohn's with granulomas and signs of chronic inflammation.

The pediatric GI said the inflammation was mild, but the distribution was moderate. He started her on Apriso right away, and wants her to go on 6 MP. (He's already done the blood work for 6MP, which all came back fine.) But he doesn't think she needs a steroid.

He strongly recommended putting her on 6 MP. The other option he presented was just doing targeted therapy, that would hit her colon but wouldn't deal with the symptoms in the rest of her digestive track. But that would involved doing an MRI, and then another endoscopy in 6 months, and a strong possibility that she would have to go on the immune suppressant anyway.

I like the doctor. He seems smart, thorough and experienced. But the idea of my daughter being on these intense drugs indefinitely is scary. Does anyone have children with Crohn's who don't have to be on any maintenance medication?

I've learned a lot so far from reading posts on this board and am so glad I found this community.

 

[my little penguin]

Welcome !!
Sorry you had to find us
My kiddo was Dx at age 7 and soon will be 13
No parents want their kids on any of these meds
But you have to think in terms of today not indefinitely
Since new drugs come to market and new better understanding of the disease is changing etc...
On the beginning most ped gi
Do a upper /lower colonoscopy with biopsies
Then imaging Mre plus capsule endoscopy to determine the full extent of the disease
Can't some don't do the capsule endoscopy
But Mre is a minimum
You have a very long small intestine that can't be viewed at all on a scope so imaging is the only way to determine if there is damage
This is important to know so you a know how bad she is and b know if the meds are helping or not

Neither med your gi is talking about will get rid of the inflammation by itself
6-mp takes 3-5 months to become effective
Most gi no longer prescribe 6-mp since it increases risk of lymphoma
They use methotrexate instead which takes 8-12 weeks .

Second if you are not treating the inflammation then it will continue to get worse until the med can take over
6-mp and mtx etc are not designed to reduce inflammation they are just there to maintain it
Asprio is a 5-asa which is not FDA approved as a monotherapy for crohns
It basically acts as a cream to treat the top layer of the intestine only
Most gi refer to it like giving aspirin for a brain tumor
Not going to help too much but not going to hurt either

Most ped gi use een (exclusive enteral nutrition ) formula only no food for 6-9 weeks
As effective as steriods but no side effects
Increased weight and growth plus at least for my kiddo helps with anemia

Ds has done een 3 times so far and supplemental en with food since Dx

Please get a second opinion

 

[Maya142]

Hi and welcome!
Sorry you have to be here.

Pediatric IBD tends to be harder to control than adult IBD which is why most pediatric GIs tend to use immunomodulators or biologics. Most doctors agree that while drugs like Apriso do not hurt, they also do not help. They only target the first layer of the intestine while Crohn's affects all layers.

The side effects of immunomodulators do sound scary but to us the complications of untreated Crohn's were much scarier. Untreated inflammation can lead to strictures, fistulae, abscesses, infections and even cancer. In kids, untreated inflammation can interfere with growth and development.

My daughter is now on Imuran - the sister drug of 6MP. She has had no issues besides a little nausea when she started it. She is monitored very carefully. She is also on a biologic for her juvenile arthritis.

This is a good presentation about the risks and the benefits of various meds for IBD: http://programs.rmei.com/CCFA139VL/

An MRE or small bowel imaging is pretty standard and should really be done at diagnosis, if it hasn't already been done. It sounds like your daughter has inflammation in many places, so her small bowel should be checked.

If you are not comfortable with 6MP, I would encourage you to get a second opinion. Boston Children's, CHOP and Cincinnati Children's are the top 3 pediatric IBD centers. Mount Sinai in NYC is also good.

Remember that 6MP will take some time to work - think months, not weeks. Your daughter may need steroids or EEN (formula only diet) to help get the inflammation under control while it kicks in.

Typically, if growth failure is present, then her IBD would not be considered mild.

It is a VERY tough decision - we agonized and agonized over it. I spent many sleepless nights worrying about it. But it was the right decision for us and we have never regretted it.

I'll tag some other parents so you can hear from them: Clash, Pilgrim, pdx, crohnsinct, Kimmidwife, Farmwife

 

[my little penguin]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4419092/?report=classic

Good review

Abstract
BACKGROUND & AIMS: Thiopurine therapy for inflammatory bowel disease (IBD) has been associated with increased risk for lymphoma. We estimated the relative risk of lymphoma in patients with IBD exposed to thiopurines and compared relative risk values derived from population-based studies with those from referral center-based studies. We investigated whether active use increased risk compared with past use, and whether sex, age, or duration of use affects risk of lymphoma.

METHODS: We searched MEDLINE, EMBASE, and Cochrane databases, as well as conference abstracts and international publications, for the terms "6-MP and lymphoma," "6-mercaptopurine and lymphoma," "thiopurines and lymphoma," "azathioprine and cancer and IBD," "azathioprine and malignancy and IBD," "azathioprine and lymphoma," and "lymphoproliferative and thiopurines." Pooled standardized incidence ratios (SIRs) and 95% confidence intervals (CIs) were estimated. The deviance statistic from Poisson models was used to calculate heterogeneity.

RESULTS: Eighteen studies (among 4383 citations) met our inclusion criteria. Overall, the SIR for lymphoma was 4.92 (95% CI, 3.10-7.78), ranging from 2.80 (95% CI, 1.82-4.32) in 8 population studies to 9.24 (95% CI, 4.69-18.2) in 10 referral studies. Population studies demonstrated an increased risk among current users (SIR = 5.71; 95% CI, 3.72-10.1) but not former users (SIR = 1.42; 95% CI, 0.86-2.34). Level of risk became significant after 1 year of exposure. Men have a greater risk than women (relative risk = 1.98; P < .05); both sexes were at increased risk for lymphoma (SIR for men = 4.50; 95% CI = 3.71-5.40 and SIR for women = 2.29; 95% CI = 1.69-3.05). Patients younger than 30 years had the highest relative risk (SIR = 6.99; 95% CI, 2.99-16.4); younger men had the highest risk. The absolute risk was highest in patients older than 50 years (1:354 cases per patient-year, with a relative risk of 4.78).

CONCLUSIONS: Compared with studies from referral centers, population-based studies of IBD patients show a lower but significantly increased risk of lymphoma among patients taking thiopurines. The increased risk does not appear to persist after discontinuation of therapy. Patients over 50 have the highest absolute risk of lymphoma per year on thiopurines, while men under 35 may also be a high risk group. More study is needed to precisely understand groups highest at risk. The risks of lymphoma and potential benefits of therapy should be considered for all patients with IBD.

From
https://www.ncbi.nlm.nih.gov/m/pubmed/24879926/

 

[Maya142]

Wanted to add - some doctors are now using Methotrexate in the place of 6MP/Imuran. That might be something else to ask about. It is also an immunomodulator but appears to have slightly fewer risks. It is weekly, taken either as pills or an injection (teeny tiny needle and it doesn't really hurt!).

 

[pdx]

I'm sorry that you have to be here, but I'm glad you found this forum. I don't know much about Apriso or 6-MP, but I do have some experience with starting a maintenance medicine without short-term measures such as steroids or EEN.

My daughter was started on Remicade right after her diagnosis, but her doctor wanted to see if she could get by without steroids or EEN. We agreed with that decision at the time, but in hindsight, we wish that we had started her on EEN right away, along with Remicade. Maintenance meds can take months to start working, and they often don't work well when inflammation is high. In my daughter's case, she just got sicker and sicker for months, ending up in the hospital twice, and we had to add EEN, steroids, and a second maintenance med (methotrexate) before starting to see improvement. I think she would have started healing much faster if she had started EEN right from the beginning.

As for the idea of my daughter being on powerful meds for life--yes, it's scary, and I wish she didn't need them. But after seeing her so terribly sick for so long in the months after her diagnosis, I'm now just really grateful that those meds exist.

Good luck with whatever treatment you decide on--I know the decisions are really hard--and I hope that your daughter starts healing soon!

 

[Farmwife]

Hi and welcome.
I'm so sorry you and your dear child have to deal worth this.
My dd got the flu and was never the same.

I agree, you might still have to advocate for your daughter if her med isn't enough.
My grace was dx at 3 but now is 7.5 yrs old and has been thru many drugs. All with little to no side effects.

Please ask as many questions as you like. We're all here for each other.

 

[Pilgrim]

Hi! Sorry you're here...
Our daughter was diagnosed at 3 and is now 6. We started out with 6 weeks of EEN (formula only diet -no food) to induce remission. It was tough but we wanted to avoid steroids.
I have to echo what has been mentioned by other parents that Apriso isn't an effective medication for Crohn's.
I very much empathize with your desire to try and avoid maintenance meds. We tried subsequent rounds of EEN, SCD diet, right now we're working on a gluten-free, dairy free diet and many supplements. But she is also on a biologic (Humira) and possibly sliding into a flare anyway and GI is talking about adding two more meds. It's unbelievably hope crushing!
I guess what I want to tell you is that we wanted no meds. We tried a lot. She still gets sick. I want to save her from early surgery, so whenever it seemed necessary we ended up saying yes to meds.
There's no easy answer but under treated Crohn's is dangerous.

 

[polly13]

Hi and welcome, so sorry you had to find us, our daughter Lucy was diagnosed at 2 and is now 8 so a similar age to your little one. Lucy is currently on humira and methotrexate which has worked well for the last three years until very recently, she has also been on other combinations of very scary drugs. I understand completely the drugs and their potential side effects are very scary but as somebody has said already so is untreated crohns disease and for us Lucy was so miserable we felt we didnt really have a choice and once she was doing better and living a normal life, we put the scary side effects out of our minds and genuinly dont think about it.
Polly

 

[CrohnsKidMom]

So sorry you are going through this! My son was dx'd at age 8. He's 12 now. Seeing your child sick, then getting the diagnosis is all so overwhelming. Then comes the decisions about how to treat it. its so hard! But, Crohns will not back down without serious treatment, which means those heavy duty drugs, or EEN, as prev mentioned. EEN can be tough to do, from what I understand, but it works well and is drug-free. All the best to you as you make these tough decisions.