Crohn's Disease Forum » Parents of Kids with IBD » Please please please help!

07-31-2012, 01:49 PM   #1
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Please please please help!

10 year old child with Crohn's and Juvenile Arthritis
Hi. My 10 year old has Crohn's and Juvenile Arthritis. It is hard for me to write this through all my tears. She is all ready on Methotrexate for the Juvenile Arthritis. Now we are looking at either Etanercept or Remicade being added in for the Crohn's. I feel like I am sending her of to her death bed, that the chances of her getting Hepatosplenic T-Cell Lymphoma (or HSTCL) are increased. Especially for a child taking both Methotrexate and either Etanercept or Remicade. Does anyone know the chances of getting HSTCL on a combination of these medicines for a 10 year old girl? I just pray and pray and pray. On the other hand if I don't give it to her the chances that she could end up crippled from the arthritis or serve side effects from the crohn's are of course, there. She will have to be on these medicines for the rest of her life. I just feel sick about it and can't stop crying (when she's not looking). Thanks.
07-31-2012, 02:31 PM   #2
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So sorry to hear about your daughter. I understand your tears - I have shed a few myself and my son isn't that bad at the moment.
Sorry I have no experience with meds yet, but just wanted to wish you luck with your daughter's treatment and hope that it works wonders for her so that it makes all worth it.
07-31-2012, 02:41 PM   #3
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Hi- good luck hope the drugs work soon and keep us posted big hugs. Hope your daughter feels better soon your in my thoughts
07-31-2012, 02:54 PM   #4
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I know it's scary, especially with a young child, and although I'm not big on medications... I was on Remicade for a really long time and it had the least side effects of all the medications I've ever taken for crohn's, I was also on it while I was pregnant and my daughter is as healthy as a mule! I don't know much about the other medications you mentioned she is on, so I don't know what sort of interaction they may have. But your doctor wouldn't advise it if it weren't safe. Just weigh the risks and benefits, that's all you can really do. As far as the Remicade aspect of it though, the only bad things I've heard were of people having an allergic reaction, which is an easy remedy. So if her crohn's symptoms are that bad, I would definitely do it. Remicade is also used to treat Rheumatoid Arthritis I believe, so it would probably help with her Juvenile Arthritis as well. Best of luck to you!
Diagnosed with CD in 2004 at age 18.

Previous Medications:
Every oral medication,
Cimzia, etc..

Currently Taking:
LDN 3 mg
VSL #3
Prednisone 10 mg
Flagyl 1000 mg
Xanax as needed

Insurance still rejecting appeals for Stem Cell Transplant. Tested positive for JCV Antibody so Tysabri is not an option. Searching for matches in Cord Blood Registry and working with an attorney to fight insurance company. Fingers and toes crossed!
07-31-2012, 02:55 PM   #5
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So sorry to hear about your daughter. My son is 15 and on remicade. I just wanted give you a link with some information. It is the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition or On this site it has information about combo therapies and something related to your question and the HSTCL study that was done came to mind when you posted

Hepatosplenic T-cell lymphoma (HSTCL): A growing
number of cases of HSTCL have been reported in
adolescent and young adult CD patients under treatment
with a combination of thiopurines (azathioprine or
6-MP) and infliximab(Remicade). This report also examined
10 patients receiving thiopurine monotherapy.
A separate, potentially important observation
is that no cases of HSTCL have been reported in
rheumatology or dermatology patients treated with
infliximab alone or in combination with methotrexate

I thought the last statement in bold might give you some insight into the studies that have been done. I know it is a scary situation and one that no parent wants to face. It helped me to look at the absolute percent risks which were actually quite small. Also the cases of HSTCL that have been reported show the highest risk among young adult males, although they don't know why. I hope your daughter feels well soon!

Edit: Oh just thought of something else. My cousin's daughter who is 18 now has been on Remicade and Methotrexate for over 2 years now for JRA. She hasn't had any bad side effects. The only thing she ever experiences is fatigue after her infusion. Anywho, just wanted to add that, again Good luck and welcome to the forum!!
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
07-31-2012, 03:30 PM   #6
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Hi Princesspea,
What a cute nickname name for a girl.
Not to much helpful info to add. My 3 1/2 yr. old girl in still undiagnosed.
I'm so sorry you have to face these hard choices. I've been looking into the different meds, so when and IF the time come for a dx for my Grace and I will be more prepared to make those decisions. The risk for most of theses drugs are low. You have to consider what the child will face with out these drugs to determine if their worth it. Most of the time they are!!!
I hope all goes well for her and they bring things into remission soon.
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
07-31-2012, 04:13 PM   #7
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Welcome and so sorry to hear about your daughter. I have a friend with a son with juvenile arthritis, I have heard it's likely for either to develop the other. The medications are also similar, so Methotrexate or Remicade alone could help both conditions, but I think are often used in combination anyway. Make sure you ask all your questions out with the doctor so you are comfortable with these hard decisions for your child. I agree that it's better to treat despite the scary though rare risks. There's also some increase in risk to boys with the remicade/6mp combo, interestingly enough. Hang in there!
Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (25mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
07-31-2012, 04:18 PM   #8
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Here is the FDA table which suggests the incidence of HSTCL is much lower in females than males. 34 males, 5 females, 3 unknown

Hugs --it is so difficult to make these decisions for our children.
07-31-2012, 04:56 PM   #9
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hi Princesspea,
I am so sorry to hear about your situation. it is so tough what our children have to go through. I wanted to ask if you have thought about other later natives such as enteral nutrition or low dose naltrexone? both are a lot safer and many people on this site have had great success with getting their crohns or child's crohns into remission with these. there is a lot of information on this site about both.

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
07-31-2012, 05:09 PM   #10
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HSTCL update

This is a very long post that has four parts to it. As always, talk with your doctor about your concerns. Pin them to the wall if necessary to get the best answers they can give you on the latest research/findings/risk assessments.

The four parts:
  • At the beginning are summaries/comments on two very recently published papers about HSTCL (hepatosplenic t-cell lymphoma). .
  • My attempt to put HSTCL in context or describe the big picture. If someone else knows more about interpreting/understanding epidemiological data like this, I hope you will share/comment.
  • HSTCL prognosis and treatment.
  • My 2 cents FWIW.

1) Recent research studies:

Study #1 -

The incidence of hepatosplenic T-cell lymphoma in a large managed care organization, with reference to anti-tumor necrosis factor therapy, Northern California, 2000-2006.

The researchers found 6 cases of HSTCL diagnosed at Kaiser Northern California from 2000-2006. 1 case was Crohn’s (steroids, thiopurine and remicade) and 1 was HIV-related. There is no info on the other 4. They calculated an annual age-standardized incidence rate of 0.3 (95%CI, 0.11-0.65) per million person-years.

It is hard to know exactly what this means for children with IBD who are taking biologics or immune suppressant meds. What it does show is that the frequency of this kind of cancer in the general population is very, very rare. This makes it pretty much impossible for anyone to estimate the risk of developing HSTCL in youth with IBD. For comparison, the estimated annual age standardized incidence rate in 2008 for Non-Hodgkin’s Lymphoma in the US was 10.2 per million person-years.

Study #2 -

Hepatosplenic T-cell lymphoma in patients receiving TNF-α inhibitor therapy: expanding the groups at risk.

The study authors say three more groups should be considered at higher risk for HSTCL including women, rheumatoid arthritis (RA) patients, and age 65+. This analysis is based on the 25 cases reported to the FDA. I only had access to the abstract which does not contain enough info to truly evaluate these conclusions.

I am skeptical that they had enough data to justify the recommendations. For example, 22 cases had IBD and only 3 had RA. Ok, you can say 3 had RA so people with RA are at risk. There is pretty good evidence that people with RA and high rates of inflammation are already at a very high risk for lymphomas (perhaps as much as 25 times higher than general population). Maybe some of those people would have gotten HSTCL anyway. At what point do you ring the alarm bell for RA patients? 1 case, 2 cases, 3 cases out of hundreds of thousands of patients on immunomodulators and/or biologics?

2. Context:
  • Both of these papers are based on adults, not youth/young adults/kids making it difficult to know to what extent these findings apply to our kids.
  • How many people are taking these meds who therefore could be at risk of HSTCL? The potential total number of people who have used these meds is 2.4 million+.Abbott labs says 500,000 people worldwide have used or are currently on Humira. Remicade is estimated at 1.3 million people, Enbrel 600,000 and of course much fewer for Cimzia and a couple other new or rarely used TNF-alpha blockers. That means There are no separate figures for children so I assume they are included in these numbers. There are no separate reported figures that I could find for IBD vs. RA and other diseases so these all seem to have been lumped together.
  • It is absolutely impossible to know how many people are now taking or have taken immunomodulators(Mercaptopurine and Methotrexate). These drugs are widely used for other conditions like cancer treatment. Mercaptopurine and variants have been used to treat IBD for more than 30 years. I think it is safe to say that the number of people who have used these meds may be 10 times the number of people who have taken a TNF-alpha blocker.

3. HSTCL prognosis and treatment

None of this matters if it is your child that gets HSTCL since prognosis is “very grim”. Of the 25 cases reported to FDA one went into remission and the rest died with median survival of 8 months. I found 3 case reports of remission following intensive chemotherapy in anyone with HSTCL. The most recent case report advocated consideration of a new treatment strategy based on viewing this cancer as a blood-based cancer like leukemia instead of a lymphoma (immune system).

4. My 2 cents

For our family it came down to choosing between:
• potential unknown risk of HSTCL (which seems very tiny to me)
• the well-known high risk of IBD complications and long term damage from uncontrolled IBD plus current quality of life issues. My son’s doctor says there’s no actual risk. Rather he is certain that these kids will get sicker without these kinds of treatment.

Before Mercaptopurine (6-MP, Imuran, etc.) became available and widely used to treat IBD the rates of surgery were sky high. Within 10 years of diagnosis upwards of 70% of IBDers had required abdominal surgery. Many spent years on prednisone. Many were unable to work or life anything like a normal life. The life expectancy of people with IBD was estimated to be as much as 20 years less than average people. I for one don’t want to go back to those days.

On the one hand I hate having to make these kinds of decisions. On the other hand I am thankful that I have the luxury of choice. Some parents can only stand by and watch their child suffer and/or die because no treatment is possible or available for their child’s condition or disease.


Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
07-31-2012, 07:51 PM   #11
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Hi princesspea and

I am so very sorry to hear about your daughter and the very tough decisions you are now forced to face.

Patricia is spot on with her post. I don't have time at present to respond at length (sneeking this in at work...) but I would also like to link you to an article regarding balancing the risks and benefits of treatment in IBD...

...hopefully the links that have been provided will be able to allay your fears somewhat.

We understand your fears Mum and how awful this is for you, please know that you are not alone.

Dusty. xxx
Mum of 2 kids with Crohn's.
07-31-2012, 08:00 PM   #12
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One thing to consider as others have said is relative risk versus benefit.
Regardless of what disease your child has the very act of getting into a car everyday is the most deadliest thing for a child. But the benefit of being able to travel is usually seen to outweigh that risk. Drowning is the second one for children.

Even those studies done with pediatric IBD and biologics/immunosuppressants only slightly increased the overall risk. Sure the number doubled ( from something like 2 in 10,000 to 4 in 10,000) but the odds are in her favor.
It doesn't make it any easier but looking at the "real" numbers as well as risks we take everyday helps me put the benefits/rewards received from the meds in a better prospective.
DS - -Crohn's -Stelara -mtx
07-31-2012, 08:14 PM   #13
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One thing to consider as others have said is relative risk versus benefit.
Regardless of what disease your child has the very act of getting into a car everyday is the most deadliest thing for a child. But the benefit of being able to travel is usually seen to outweigh that risk. Drowning is the second one for children.

Very true MLP!
07-31-2012, 08:21 PM   #14
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<3 I just want to give you a big hug. She is so lucky to have you as her momma. She will get through this with you by her side
Diagnosed Crohn's/Colitis/RA/Hypothyroid in 2000
Endometriosis 05
Resection after resection, drug after drug
Ostomy placed, Rectum removed 2010 etc etc etc..

MED FREE! Working with GI on the SCD Diet to manage my Crohn's =D
I'm VERY new to the diet. Seems certain foods cause my symptoms. Testing that theory!

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07-31-2012, 08:46 PM   #15
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I'm so sorry that you are faced with these decisions. It truly is heartbreaking for us parents. I hope the information you've received has helped with your decision but it'll never easy to accept that our kids must have these medications. It's a struggle that every parent here can understand. My son is currently on EN but I know we are facing medications in the near future and I can certainly understand your fears.

But, as my little penguin said, we accept risks for our children everyday to enable them to have the quality of life we feel they deserve... swimming, riding in cars, driving cars as teens, sports, etc. But, would we be as accepting if someone handed us the stats of risks just as we let our little one go off swimming, etc.? My son plays hockey and my daughter did horseback riding/jumping and, years ago, I stopped reading articles relating to hockey or riding injuries because I knew I wouldn't be able to watch them head out to their sport with lists of stats flashing in my head! But, even knowing the risks (in the back of my mind), I knew that their enjoyment of their sports far outweighed the risks.

Try to remember that while these meds do have risk, they are small and these same medications will greatly reduce the IBD risks and greatly enhance their quality of life! Newer medications and treatments are always in development, perhaps we just need to keep them healthy until even less risky treatments are available.

Thinking of you
Tess, mom to S
Diagnosed May 2011

May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil

Last edited by Tesscorm; 07-31-2012 at 09:26 PM.
07-31-2012, 09:33 PM   #16
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Hi Princesspea,

I am so sorry for all you are having to deal with. I know how hard it is to manage one illness and can't imagine how hard it is for you to be managing two.

My daughter is on Remicade and we were told we had to add Methotrexate. The link Dusty sent you is excellent and really helped us come to terms with adding the second drug. It discusses actual risks and when you look at it in those terms you can wrap your head around the issue so much better. I also agree with everything everyone else said about risk and reward and how horrible unmanaged disease is.

That said, you mentioned that the second drug (Remicade) was being added for the Crohns. Our first drug was Remicade and while I was O.K. with the risks of adding Methotrexate for our daughter's Crohns I wanted to avoid it if possible. Our doc agreeed to try a period of exclusive Enteral Nutrition. She did 6 weeks and it was exactly what she needed to reduce her inflammation, stop her bleeding and firm up her stools. If you haven't already, I encourage you to look into it. There is a thread on the parents forum called Kids on EN. There are a few parents who are still active here who would be willing to answer any questions you have. EN is succesful at reducing inflammation AND achieving mucosal healing and has been shown to work just as good as steroids.

Good luck with your search for answers and the right decision for your family.

Keep us posted!
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
07-31-2012, 10:24 PM   #17
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I'm so sorry to hear you all are going through some very difficult times!! I hope what I'm about to say will relieve your fears! :-) Our daughter, Breanna, is 10 years old and was just diagnosed in Feb this year. She started on Methotrexate, Imuran and Nexium. She failed on this treatment and ultimately ended up admitted in hopes to gain control. They decided after no improvement to start her on Remicade. It was a VERY DIFFICULT decision for us as well because of the unknowns! I can testify that she JUST had her second infusion of Remicade and is ALMOST in remission!! :-) We had been told it would take at least 2 treatments to see any improvement but seen a HUGE improvement after the first! She does remain on the Methotrexate and our GI said as it is documented there is a risk of HSTCL but it is more prominent in males. It ultimately made our decision easy on us when we seen our little girl come back to us! Our prayers are being sent for you and your family while you are going through this extremely difficult time! Keep your head up and know you are not alone! :-)
08-01-2012, 03:50 PM   #18
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I also mean't to mention that another Mum (AZMOM) here has a 9 year old daughter with Crohn's and JRA...

Dusty. xxx
08-06-2012, 08:23 PM   #19
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Hey, Julie here. Yes, Claire was dx with JRA at age 3 and Crohn's at age 6. Now she's 9.

Enbrel did put her in TOTAL remission on the JRA side but I'll be honest, we had a rare neuro side effect (Transverse Myelitis) after 18months on Enbrel so now we can't have ANY anti-TNF drugs. That includes Remicade.

I was just talking with her Rheumatologist a few weeks ago and I told him that I would do it all again for the quality of life we experienced while she was in remission. And......I wish Remicade was on option for us.

All that know your daughter and you know your comfort level with medications. know how comfortable you are with the docs' advice. Is everyone involved in her care in agreement that this is the route you need to go?

My two cents is go with your gut (pardon the pun) and realize that putting her on medication that is proven to work is less risky than many every day things. And definitely less risky than unchecked IBD unless you are able to find remission with other treatments (EN, etc).

Keep us posted and let us know if we can aren't alone on here!


Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP

Crohn's Disease Forum » Parents of Kids with IBD » Please please please help!
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