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Treatment for 6yr old son

Hi, I am new to this forum, as my son was diagnosed with Crohn's of the stomach, duodenum, and cecum this May. He is on Pentasa, prilosec, vitamin d, iron (newly deficient), and a probiotic. He did 2 months of steroids over the summer which worked wonders. The daily vomiting stopped completely. In August his cal protectin was down from 650 to 70. Now its back up to 550, and he occasionally complains of stomach pain, but no vomiting. The np told me to be prepared with questions about Imuran/Remicade for our appt next week. Is this a necessary next step? I really dont want to use these drugs unless necessary and hes feeling ill routinely. Is this calprotectin level enough to base this treatment on? Any other parents with young kids have any advice??

my little penguin

Staff member
Remicade isntbas bad as it seems
DS started it at age 8
He is now almost 12 and on humira plus mtx.
Pentasa is the equivalent of giving aspirin for a brain tumor per most Gi
It only effects the top layer of skin in the intestines but crohns goes through all layers.

Yours is a common question among new parents
All eventually end up there
It the most effective treatment and kids tend to have the most severe course vs adults
Kids change from inflammatory to stricturing or fistulaizing as well as spreading over the 10 year course from dx( most kids are dx at 15 though)
DS was dx at age 7
All kids dx under the age of 10 should have genetic ibd panels done to rule out immunodeficiency that often mimic crohns as well as other severe subtypes to treat them better .
DS is in the process of being tested now -4 years after dx
Wasn't as available before

I can say most Gi use a combo of remicade plus mtx now for boys instead of imuran or 6-mp since the risk is lower for lymphoma with mtx.

As for remicade DS loved it
I didn't realize how sick he was till I saw him normal on remicade

Love biologics they change the surgery risk of the disease from 75% to 30-40%
Keeping as much of the intestine as healthy as long as possible Is my goal
Once they start cutting the odds of a second surgery are very high
I know there are other threads that will have information helpful to your situation but just wanted to say that I understand what you are going through. My daughter has UC - diagnosed at 6 years old. We fought so very hard to keep her off Remicade. Short story, after some success with Pentasa, she deteriorated, eventually her disease became steroid refractory, she was hospitalized and we were facing Remicade or emergency surgery. Essentially, the decision was made for us and we started Remicade. We were devastated and scared THEN....but not any more. We have our beautiful, outgoing, smart daughter back....you don't realize just how sick your child is until they are healthy and thriving again. We have never looked back. I wish you luck with whatever treatment you pursue. My prayers go out to you and your family.
Hi and welcome. My daughter was diagnosed at 3 and started Humira (same group of drug as Remicade) at age 4. It has done a good job of putting her symptomatically in remission.
One of the questions I think you should ask is about the benefits and risks of Remicade monotherapy as opposed to combo therapy with Imuran especially in boys.
Welcome to the forum! Sorry to hear about your son. Unfortunately, the meds that work for CD are pretty heavy-duty. My son was on methotrexate injections for two years, but that med failed in the spring and now he is on Remicade with a lower, oral dose of methotrexate. My son actually prefers Remicade to the weekly methotrexate injections from mom! If you want to avoid drugs, you might want to consider EEN, liquid formula diet, often administered via NG tube. You may still be looking at the big meds in the future, but EEN may stave it off for now. We have not done EEN, but I'm sure those who have will be along.


Staff member
My daughter is 18 and diagnosed at 16. We are HUGE Remicade fans here! She loved the infusions - she looked at them as a chance to relax and watch TV and miss school! No side effects except some tiredness after the infusions. No increase in infections.

8 months after Remicade her scopes looked MUCH better - her colon look "beautiful" according to her GI.

We've never regretted putting her on biologics - in fact, I think it was the best decision we made for her!
It sounds like the steroids brought things under control and now that he's off them, the inflammation has returned. Pentasa generally isn't strong enough for pediatric Crohn's (BTDT!). Like others have said, next would be the immunosuppressants and/or biologics.

Personally, Remicade gave my son his life back and and I regret not starting it sooner. We waited too long to medicate properly and he ended up with a resection. Then we wasted 6 months on Azathioprine, which simply didn't work, before we hit the jackpot with Remicade.

If I could do it all over, I'd just straight to Remicade, but you need to do what your son needs right now and your GI can help you make that decision.
I really appreciate everyone taking the time to post a response. I didn't know that methotrexate is considered a better option vs azathioprine in young boys. I'll definitely bring that up at our appt. I just feel like he's so young for all of this. Is an elevated calprotectin level and occasional stomach pain enough to warrant this next step in meds? I feel like i want to save these meds for the future. I don't want to ruin out of options before he's even a teenager.

my little penguin

Staff member
You also don't want to have surgery before he is a teenager either
And meds like 6-mp/aza have a 75% rate of surgery within 5 years of dx
Raised fecal means inflammation is present and possible doing damage to his intestine
That means the chance of scaring increases
The intestine is a flexible moving tube
When inflammation occurs over and over again
Stricturing and fistulas can happen
The tube loses Flexability and part become rigid ( scar tissues )
When that builds up the tube becomes smaller ( stricturing)
And either food /stool gets stuck or the pressure builds up and the body forms a fistula ( weaker time tube to bypass the stricture
All putting the kiddo at risk of rupturing intestine due to perforation or obstruction .

So simple stomach ache isn't so simple

Look at images of colons and small bowel removed for surgeries
Very important to see what damage looks like
Easier to think it isn't so bad or forget
Since you can't see it
But if it was on the surface you wouldn't let it go untreated
I get the holding off till teenager
My kiddo started remicade at 8 and humira at 9
But some folks have been on remicade for over 10 years
DS has been on humira for 2.5 years
Add in new drugs keep entering the market

Just try to focus on a getting a drug that works and keeping your kiddo as healthy as possible in the present

It does get easier I promise

Lady Organic

Staff member
unfortunately, often, after a remission with steroids, the disease will come back. It seems like this is in the process or slowly happening to your son. A number above 250 for FC most likely means inflammation/disease activity. It is risky and non-necessary to wait and I believe its best to take action as soon as possible to avoid another possible big crisis or complications. Enteral liquid diet (EEN) has been proven to be as effective as steroids for crohn's disease in kids. Maybe you could ask the nurse or GI about it. This is also another option as CrohKidMom suggested. wishing you well.
He just did so well after his course of steroids, and things have been going pretty well that I think maybe I'm in denial. I guess this is what they mean when they say it's an invisible disease. So while I may not think he's that bad, the inflammation is causing unseen damage that'll lead to surgeries down the road. It's really helpful to have it explained by other parents. Thank you everyone..especially Little Penguin. I'm not very familiar with EEN, but this is the only nutrition they receive? That seems like it would be really hard for kids not to eat anything orally. Also wondering how my 6yr old would handle 2 hour Remicade infusions. When we go for bloodwork, he gets so worked up and carries on with screaming and crying, that they can barely draw his blood. I can't even imagine putting him thru the infusions. Ugh. If that's what we decide is the best option, I'm sure we'll get thrid it. It's all just so overwhelming right now.
My son was really freaked out by needles in the beginning. He still gets stressed, but manages it ok. There are freezing creams and sprays that can be used that you may find helpful.
How EEN is administered can vary from GI to GI. Some allow it orally. From what our GI says, it seems to be a bit more flexible in the US. Our GI is very strict, in that he would only allow it via NG tube, 24-7, and no solids at all for 12 weeks. We just didn't think our 8yr old could handle it, which is why we chose steroids too. It can be used as maintenance as well, but to a lesser success rate. It is worth a conversation with your GI about it though.


Well-known member
Both of my daughters have done EEN in addition to meds because their meds weren't getting them all the way there. My older daughter did it with Remicade and my younger along with Methotrexate. Older daughter hasn't had to do it again but my younger daughter has done it twice and is now using partial enteral nutrition and diet to try to manage things.

For the most part in the US it is 6-8 weeks exclusive and then slow reintro of food. Success is independent of method of delivery and even type of formula. You use what works for your child. Our GI is adamant about exclusive use in that only water and one piece of chewing gum a day are allowed in addition to formula. However, other centers allow up to 20% of calories from food.

EEN is great but as a stand alone therapy once food is reintroduced it is only a matter of time before inflammation returns. There is a lot of research on diets for IBD that could be used along with PEN to keep the kids in remission. Also some centers will cycle on and off exclusive to keep a child in remission. It is more of an art than a science but had gained a lot more recognition in the pediatric GI community over the last 3-4 years.

Here is a paper on it.

Yes, it's overwhelming at first, but it does get easier once you get a good long-term treatment plan in place. I'm another one who wishes we had started biologics earlier. My daughter wasn't diagnosed until last year, at age 12, but she had had symptoms since she was 7. As a result of being untreated for so long, she had fistulizing disease, which led to scarring that has probably caused strictures. She's still doing very well right now, but she has to be careful about what she eats, and I wish we'd been able to start treatment earlier.

Like your son, my daughter always got extremely worked up by blood draws, so I also was not thrilled with the idea of the Remicade infusion. I won't lie to you--it's still not easy for her--but we've found ways to make it bearable. First, we always put lidocaine cream on her arm about an hour before the IV goes in. We also just started using a Buzzy (buzzyhelps.com) while the IV is placed, and that helps too. She plays games and watches videos on an iPad during the infusion itself, and I also bring some of her favorite foods along. Finally, we used a small dose of Ativan (lorazepam) for the first few infusions, because she was really anxious beforehand, even in the car on the way to the hospital. She doesn't need the Ativan any more.

There are also kids on the forum who've successfully gone to see a therapist about their needle phobia, so that's another option.

One nice thing about Remicade is that all blood draws can be done during the IV placement, so no need for separate blood draws for labs.

Good luck with your decision-making. I know it's not easy.
Hi and welcome.
My girl is also 6. There wonderful handfuls, aren't they.:yfaint: we live in northern Michigan.
We go to Devos in Grand Rapids. My kiddo also had Juvenile Arthritis.
Grace was dx at 3. She's been on some for off EEN the whole time.
She does Remicade but doesn't have a fear of needles.
Her Remicade infusion is the highlight of her month because she gets mama time and is spoiled rotten there.

She's also done Humira, Mtx, Sulfasalazine. Right now she's also on Imuran.

Please ask anything you like. I try to check in at least 3-5 times a day.
We are 30 miles north of detroit, and seeing Dr Lyons at St John. Our appt is Monday to discuss everything, so this thread is helping me formulate my list of questions. While I do like him, I'm wondering if I should get a 2nd opinion before any new therapy. Children's Hospial is what I'm thinking. Or u of m?


Staff member
My son is much older than yours but, just another vote of support for remicade. EEN took my son to clinical remission (no outward signs) and supplemental EN kept him there for two years and he looked and felt great (couple glitches here and there but nothing that would have been concerning if we hadn't already had a crohns dx) but, when we transferred to an adult GI, he was adamant that remicade was necessary. MRE's showed that there had been chronic inflammation during that time and it we were taking a risk of causing permanent damage by not treating the inflammation.

I hated the my son would have to start these meds but, by not doing so, we would have been risking possible surgery one day. As my son was 18, he had quite a bit of say in the final decision and he did not want to take the risk of permanent damage. It's now been approx. 2 years and his last scopes showed all was clear. I still wish he didn't need to use these meds but they are keeping him healthy. :)

As far as not wanting to use up the meds before he's a teen - there are new drugs coming out on the market and new ones in development. I look forward to the day when a med with fewer risks will be available for my son! :D But, for now, I'm happy that we have options to avoid surgery and keep them healthy until then!

Keep in mind, the risks with these meds are quite low. And, to maintain our (and our kids') quality of life, we accept risks everyday - driving in cars, sports, swimming, etc. It helped me to realize this... :ghug:
U of m ( C.S. Motts Children hospita) is the best in the state. Having connections there might be a big help down the road.

A good GI will always welcome a second set of eyes.
But please remember that just his age alone put him in the moderate to severe category.

We each make the best choices we can for our kids.
We're here for you no matter the choice!:heart:


Well-known member
This is actually a little funny. My first daughter was put right away on REmicade. I was mad as heck but understood she was in ICU and in bad shape. Fast foward 4 years and she has done great with it.

Now my second daughter had the same FC as your son 550. Our GI wasn't concerned. Add in steroids...they didn't help. I was begging for REmicade...doc won't have it...he wanted EEN...it worked but for how long? I am counting down the days until she can get REmi.

Just find it funny that it all depends on your perspective...hindsight is 20/20.

Good luck with whatever you decide.
For IV's my son uses a j-tip (www.jtip.com). It blasts a puff of lidocaine on the spot where they want to place the IV and numbs it. He never feels a thing. Our hospital uses it all the time, but I've never seen anyone else here mention it. It's worth asking about.

As for Remicade appointments, while three hours might seem like a long time, it usually goes by pretty quick. He watches movies, plays video games, eats special snacks. The appointment can be what you want to make of it, so make it special and fun. Maybe a special lunch after or a small toy each time?

You mentioned hoping to hold off on certain meds until he's a teenager, but I'd suggest thinking of it a little differently. You'll want him to be in a nice solid remission BEFORE he's a teenager so that he can have a normal puberty (growing) experience. If his Crohn's isn't under control when he hits puberty, it's harder on the kids to keep up with their peers. My son is really small for his age and it hasn't been fun, physically or emotionally.

The only other thing I wanted to mention was to check with your insurance. Some require a bottom up approach (must try x before moving to y) and you may not have a choice on which med to use.

Good luck today!
We use jtip as well and it's been a huge help. We also have amazing people from the child life department that help our daughter during the infusion. She's at the point where the IV doesn't even phase her (thankfully). The child life staff plays games, does crafts and keeps her distracted so our two hours fly by. If your son ends up using Remicade maybe you can ask whether they have support available through a child life department.

Good luck with your appointment today.
We just had our appt. He wants to start Remicade next week. He said the Pentasa isn't touching the Crohn's in his stomach or duodenum (only his cecum, and probably doing a mediocre job at that). He doesn't want to do another round of steroids. He said they are "poison". He said there is so much on the IBD drug front that there will be new meds by the time he's a teenager/adult that we can go to, but he needs treatment now for the inflammation. I asked if the calprotectin should be repeated - could it be false positive?? He said not at that level. If we did it again right now, he thinks it would probably be in the 800's. Coincidentally, starting last week, his stomach started hurting daily again. Ugh. He doesn't want to use Imuran or MTX now because they have much more side effects and require much more monitoring, unlike the Remicade. I asked about EEN - he said if it's a route I want to go, he'd certainly do it, but it's so very hard on the kids. I really don't think it would work out for us. He did give me some samples of Pediasure Peptide to supplement with. I hope he'll drink it - he won't drink the regular pedisure, boost, etc..so we'll really have to sell this. I did ask about genetic testing. He said he would do it in kids 4yo at age of diagnosis. He said if I wanted it done, we could do it (ins probably wouldn't cover), but it wouldn't change his course of treatment. I'm still very worried about the infusions. It took the nurse and us 15 minutes of holding him down/calming him down to put the PPD in. He was SCREAMING!! And that was for a 1 second thing. I just don't know how we are going to handle these infusions. Anyways, thanks for listening everyone and for all of the support/advice. We have an appt for a 2nd opinion next Monday. Then I guess we need to decide what to do for sure. Also - do we just get started on this, or wait until after the holidays?? His dr said if we opt to wait, he'll have to treat with steroids in the meantime. Thanks again.
It's truly scary, I know, sorry. Steroids really are worse in terms of side effects. Remicade is great when it works. You can ask for a numbing cream to put on ahead of time to help. The infusion is really rather easy after the IV insertion. There's a sticky here on treatments, remicade is here: http://www.crohnsforum.com/showthread.php?t=44907
Never hurts to get a 2nd opinion, except delaying treatment of course, but I see no issues with what your 1st doctor is saying. It usually takes awhile to schedule the 1st loading dose and getting approved with insurance, etc. Why wait? Seriously, they don't need any symptoms for damage to be done internally with this disease, which is why bloodwork and regular checkups is so key. Good luck!
Getting a second opinion is always a good idea, but I also think that everything your doctor said makes sense.

My daughter also screamed through her PPD test, so I really do understand your concern about IV's. Again, if you go with Remicade, I'd highly recommend one of the numbing options before the IV (either cream, spray, or the j-tip). I'd also strongly consider getting a prescription for Ativan or a similar sedative, even if you're not sure if you'll need it. It really helped my daughter with her first few infusions. We used a small dose--just enough to calm her hysteria--and just for the first 3 or 4 infusions. She's been on Remicade for almost a year now, and her most recent infusion went really well! No tears at all, and no anxiety the night or morning before the infusion.

E's first infusion was on Christmas eve last year, and we ended up just feeling really relieved that her treatment had started--it let us enjoy the rest of the holiday season more. Remicade can take a while to start working, too, so that also argues for starting as soon as possible.


Staff member
My daughters haven't really had huge issues with needles, but both have tried EMLA cream and said it works wonders. My younger daughter also cried through her first PPD, but dealt with her first IV well. Unfortunately, kids do get used to it to the point where they don't even flinch when they have blood drawn.

Buzzy is also a good option - we use it for shots but it works very well for IV's too:https://buzzyhelps.com

We also have found second opinions very useful but what your doctor is saying makes a lot of sense. If you want to avoid steroids, Remicade sooner rather than later is a good idea.

Ask about Child Life - they can come and play with your son and distract him to help him cope with the infusion.
Sounds like your GI gave you lots of good information. Our GI said same thing about new medicines by the time these kids are teens.

We pursued the steroid option before moving to Remicade. Same as others have said, we desperately wanted it to work. In the meantime, it didn't work and our daughter suffered from the disease AND the steroid's side effects.....

If you decide to pursue Remicade, perhaps your GI can assist with making the process easier for your son? Our GI "hand picked" the IV nurse that does the infusion and she is amazing - we've had 14 infusions so far and this particular nurse has been spot on every time. He also arranged for the head of the Child Life department to meet our daughter ahead of time so they could plan what she wanted to do at the infusion. We visited the infusion site prior to the first visit and she was able to see where she would be going. I'm not sure about your son but for our daughter she needs to know what is going to happen and when - since her diagnosis she asks that every medical procedure be explained before it's done (can't say I blame her :/). Allowing her to make some small choices has had a calming effect for her. Giving her a little surprise present at the infusion has helped us too :)

Hoping things improve for your son.
Second opinions never hurt, though I think your GI is a keeper. Can you call now to schedule the Remicade appt for next week after you get the second opinion? That way if your second opinion is the same as your current GI, you won't be wasting any time. If your second opinion has another suggestion, you can always cancel the Remi appt. Because your son is having stomach aches again, I wouldn't wait too long for treatment.

One of the reasons we left our old GI is because they blew off my son's fear of needles. They refused Emla creme or any way of making it easier on him and all he did was scream and scream. At the new clinic, they introduced us to Emla creme and it was a gift from heaven. When he was inpatient is when we learned about the j-tip and like I said before, that's been his go to for infusions. Since he's so young and he's going to be facing needles all his life, you're going to have to figure this out with him, whether it's the creme, Buzzy, distractions, or heck, even bribes.

Another trick is to have him blow out all his breath just as the needle goes in. Also let him control what he can control like standing or sitting, picking a nurse, doing it on his count, how he wants to be held. When my son was younger, he insisted on sitting on me, facing me so we were belly to belly and he'd hug me with one arm. It just made him feel better. Maybe see if letting him have a little control of something helps.


Well-known member
I think I would start the Remicade ball rolling at this point. True second opinions can't hurt but other than Remicade the only option that a second pinion could offer you is immunomodulators as mono therapy or Exclusive Enteral Nutrition. You have already ruled out EEN so you would then just be left with immunomodulator mono therapy. I do agree with your doc that the immunomodulators have more risks and side effects than biologics. However, I do not agree that the monitoring should be a reason not to choose a class of drug. It is also a tad different that your doc is not using combo therapy immunomodulator with biologic as this therapy has proven to extend the useful life of Remicade. With your son being so young, I would want to give Remicade the best shot it has at being effective for him for as long as possible.

All this said, if the immunomodulator mono therapy route is one you desire to investigate further then by all means talk to your GI or a second opinion doc about this option. You could always add the biologics down the road if the immunomodulators don't work fully.

Either way, get the paperwork started for Remicade so when you decide 100% it is ready to go!

Good luck with your decision!
I did ask Remicade alone, or with immunomodulator, and he said alone. There was so much info going back and forth, I forgot to ask why. If you are going to do both, do they have to be started together? Or can imuran or mtx be added later in Remicade therapy to extend therapy? I will definitely ask this at the 2nd opinion. I am waiting for the nurse to call from the infusion center about the Remicade. I did just get off the phone with my insurance, and I need procedure and diagnosis codes to know more, but seems like we have a 20% co-insurance amt. I'm guessing the infusions are approx $10,000ish?? I guess it'll be roughly $2000 per time. Yikes. I'll know more after I find out more from the infusion center I guess.
Check your max out-of-pocket per year. We have a 20% co-pay on Remicade and infusion services, but also a $600 max out-of-pocket per person per year, so once we paid the first $600, everything was fully covered for the rest of the year. There's also a Remicade co-pay assist program called Remistart that helps with copays, regardless of your income. I'm sure someone will be along soon who has used that program. Definitely look into that before the first infusion.

My daughter didn't start on methotrexate until a few months after starting Remicade, but I can't remember now why her doctor wanted to wait on it.


Well-known member
Definitely it can be added later. I would let the GI know that you are specifically asking about it because of it extending the useful life of an anti tnf.

The Remistart program is not based on income. You cover the first $50 or in some people's case $5 and they will cover the rest. You just have to send them the EOB and they load a MasterCard or Visa with the dollars and then you pay your bill with the card. There is a max of something like $8,000 but few people achieve that max because we all get to our out of pocket max pretty quickly and then insurance ends up paying the bulk of it.

They do not guarantee the program pasta year but we are on our third year and they keep offering us extended access with no questions about income qualification.

It is sad that on top of processing the drug info you have to process the logistics and financial aspects but trust me it all really does work out.

my little penguin

Staff member
Big hugs
Never had to do remistart since DS Max oop prior to starting remicade and only got to stay on it 8 months before stopping it.

DS started mtx a year after starting humira
So far at 2.5 years despite stopping it multiple times
No antibodies

We did the second opinion thing when Gi opted for remicade
Actually ended up starting remicade prior to second opinion since DS got bad.
But honestly there weren't any other options
Either immunosuppressants ( which in DS case already failed those )
And biologics
That's it
My daughter takes a low dose of 6mp along with Remicade. We were resistant to using both in the beginning so the GI asked us to do it until she passed the 6 month mark then we could decide whether to continue the 6mp. We had a minor set back about 4 months into Remicade then things stabilized and we were/are too afraid to change a thing so she continues on both.

We used the Remistart program for the first time recently and it was so easy after everything else we've been through that I questioned whether we did it correctly!

Lady Organic

Staff member
I had a chat at Crohn's and colitis Canada with the Janssen (remicade) quebec medical director this weekend. He confirms what has been mentionned that methotrexate is prefered immuno-supressant over Imuran in combo with remicade and especially so with young males. he also said, the success rate of Remicade for the long term is best when used in combo therapy with an immuno-supressant. I didnt ask specifically about kids, but that was his response for the adult population.
It's so hard to make these decisions. My first thought is that I would go ahead and get the Remicade started now, not after the holidays. And another tip (pardon the pun) for Remicade IVs-have your son drink lots of water starting the day before, and into the day of the infusion. My son's veins don't plump up very well, but drinking more than the usual amount of water helps. We also put a hot water bottle on his arm on the way to the hospital, and get him to squeeze a little rubber ball.
(I'm going to ask about the j-tip for my son. Didn't know such a thing existed!)
So, we got a second opinion today. After all of the support for Remicade, I'm just not totally comfortable with that route given his symptoms, which are so mild. He hasn't had any stomach pain again for a week now. I just don't know that occasional mild stomach pain and this calprotecin level warrant Remicade right now. This other GI said his case is mild and would do an MRE right now and start imuran. He also thinks he needs the scopes done again in 6 months, which our original GI said he wouldn't need for another 8 years, which I thought sounded weird. I just don't know what to do. This is awful. I want to make the right decision for my child, but I don't want to run out of options in the future, and I don't want to not do something now that can save horrible consequences in the future. I'm so conflicted!!!!

my little penguin

Staff member
But is the damage inside mild
That is the question
Many kids without crohns live with ibs ( stomach pain constipation diarrhea etc..)
The key difference with ibd is damage
Once damage is done it can't be un done.
High fecal tends to reflect ongoing inflammation which means damage .

Not one parent on here is every comfortable with any of the meds
They all stink and have the potential to cause harm in the future
Big butt here you can't live for what might happen in the future in terms of drugs options
Those change monthly
Four new drugs came on board alone in the time since ds was dx

That said if immunomodulaters are your choice
Suggest you ask your doc about mtx over Imuran since lymphoma is a much higher risk in young males taking 6-mp or Imuran than mtx.

Secondly it's the drug that gets your child into remission that is important
Sometimes we think we get to choose those drugs
But often
It's what works for your kid
No doc can tell you which drug will work and which won't
Getting an MRE prior to starting therapy sounds good
Be aware that due to movement in little kids and their size etc...
Not the most accurate things but the best we got for a test

Don't be afraid to change therapies since the one that is working is the right choice

Good luck
I have a cute blondie too =) He is 3.5 y/o.

I am in the same boat but my son's calpro has been a little higher and we are moving to methotrexate. He was on the steroids over the summer and now pentasa plus canasa isn't strong enough. This thread was very informative for me. Good luck with the next steps.


Well-known member
our ped always says treat the patient not just the labs. This can go both ways. A low fc but a suffering patient or an a symptomatic patient with a mess inside.

Our gi has us sitting at a 550 Fcp and working to make immunomodulators work (although we have been at it a year now and still haven't hit remission and I am begging for biologics) So this step is not unheard of. I think the second opinion docs approach of trying mtx or imuran and re scoping at 6 months is very reasonable assuming scopes showed mild disease. If you feel comfortable with this approach and doc then it may be good to switch. I said before you can always add biologics should the imuran/mtx not work. I would add Fcp testing everyb8 weeks though because 6 months is a long time to leave the disease unchecked. However, keep in mind that the immunomodulators can take up to 3 months to become fully effective. You should however see some move in the first 8 weeks. Maybe not a fully normal fc but some decrease.

I agree with mlp, I would ask about methotrexate as opposed to imuran given the increased risks with imuran.

Good luck with your decision! Hopefully it will be the one that works and you won't have to make another decision for a good long while.

Lady Organic

Staff member
Methotrexate seems to be now the preferred starting option in the immune-suppressants category, in young males especially. Injections over pills too.

In the meantime of taking a decision, I invite you to look at IBD-AID diet : http://www.nutritionj.com/content/13/1/5 .

maybe something that could interest you.

Your son has been diagnosed in 3 different organs... I would personally take action asap even if doctor say it is a ''mild disease''... Full and confident remission (symptoms free, good blood tests, normal range FC and mucosal healing on endoscopy) must be a target. Even mild disease activity not fully treated can lead to complications and troubles.
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