Help needed in deciding the medications. Doctor is suggesting Remicade.

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momof8yrold

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My son (8 year old) was diagnosed with Crohn's in April 2015. He was on a course of steroids (30mg. His weight was 50 lbs) for 8 weeks and then tapered. He was admitted to get IV steroids for 3 days. The steroids have definitely helped him, but he's still not in remission. Our doctor did C-diff tests couple of times and the results are negative. His symtoms are diarrhea, stomach cramps, loss of appetite and slow growth. His Crohn's is only in the colon (Crohn's colitis).

Recently we met our doctor again and he did the fecal calprotectin test. My son's fecal calprotectin is 920. It's too high and our doctor is strongly considering Remicade now. However, we are still thinking. I don't want to jump to Remicade. Somehow, my instinct is suggesting Imuran. (I know it sounds silly, but...I hope..you get my point). Doctor has told us to take the decision in a week's time. Meantime, we are going for the second opinion tomorrow at UofM.

I was considering the following options. Need your inputs..

1. To start entocort(budesonide) along with Imuran. As I understand entocort has less side effects and until Imuran kicks in, entocort can help control inflammation. One concern is, his crohn's is only in colon and I understand that entocort works mostly in Ileum (As told by my doctor). Has anyone with Crohn's Colitis have taken entocort? If not entocort, I dont mind him taking prednisone for a short time too(until Imuran kicks in)

2. Follow elemental nutrition along with Imuran. What are the options for elemental nutrition? My son is on partial elemental nutrition now. He drinks about 3 pediasure's everyday.

3. Try LDN. Is LDN given for kids? I have not much info about it.

4. Did anyone try fecal transplant for your kids? Can that be an option too?

5. Take Cipro along with Flagyl and Imuran (until Imuran kicks in). Our doctor rejected Cipro. According to our doctor, our son is too young to take Cipro. Has anyone given cipro to your kids at 8 years or younger?

Meantime, my doctor tested him for C-diff again and it's negative. He is slowly reducing weight and his stools are tarry. Does tarry stool mean there's blood in the stool?

I know too many questions. Thanks all for your time and the valuable inputs.

Current medications: 1000g Canasa(at night) 500mg Pentasa 2x a day, 1000 IUD Vitamin D3, 325mg Ferrous sulphate, Flagyl 250mg 2x a day, Prilosec (20mg)

Previous medications: Prednisone
 
Why are you afraid of remicade vs the Imuran?
Make that list
The risk of cancer is much higher with Imuran
My kiddo started remicade at age and it was a miracle drug
No side effects.
We tried 6-mp for 8 months ( sister drug to Imuran ) and he never got better
Could hardly do anything and had to watch it goof around with his liver numbers
Most Gi won't give boys especially 6-mp or Imuran anymore.
They try mtx first which also only has a low success rate
Fecal transplant is still in clinical trials and experimental.
I know remicade sounds scary but honestly it has better success rate ( especially among the parents here ) with only good side effects -growth weight gain and a kid who can play and be normal
All of us were afraid of remicade
And once started all of us wished the drug would work forever.

Ldn is extremely mild drug which gives mild cases a little nudge in the right direction per our Gi . It suppresses serotonin to trick the brain to produce more .
Not messing with mood with my kiddo since serotonin disorders ( bipolar depression etc) are not fully understood plus it only helps for mild stuff by every study our Gi saw.

I know it's hard and I know you think you have a choice on which med
But you will soon find out it's the med that fixes your kiddo that chooses you.
You just want a med to work and keep working - none of the odds are good for that for kids with crohns .
Remicade let Ds swim competively - gain 20 plus pounds ( he was 50 lbs as well at age 8)
And grow .
He had a reaction to remicade after 8 infusions but he also is extremely allergic kiddo reacts to food, barium other drugs bees etc... It was a mild reaction so we switched to humira
Since starting biologics at age 8
He has grown 8-9 inches and gained 45 pounds.
And the important part gets to be a kid again.
 
Oh and as far as steroids their side effects are a given
Osteoporosis
Cateracts
Diabetes
Mood disorders
Cushing syndrome
Poor or no growth
Immune disorders
Fatigue
Joint pain
Moon face

Each time Pred or entocort the risk of permanent damage increases
It is only a rescue med nothing more
Ds has been on it 3 times in 4 years for more than s burst ( 4 days )
First two time were to calm his system to try and let 6-mp work and then mtx work before switching to remicade.
Last time was due to arthritis flare from holding humira during an ear infection.
Each time he was on Pred for 3-4 months to try to wean back off.
I have talked to adults who had lots of Pred as a kid due to crohns
Diabetes /eye issues and brittle bones are extremely common


Ds also did een ( peptamen jr for 9 weeks while on 6-mp to avoid Pred )
He currently is on partial en with crohns exclusive diet to boost humira since its been 2.5 years . He also take mtx to help with his arthritis in his joints .
 
Welcome to the forum! My son was dx'd at age 8 as well. You are in a tough place. It is so hard to make treatment choices for your child. When my son was dx'd in 2013 he did a round of prednisone, tried Imuran but he couldn't tolerate it, then went to methotrexate injections. The MTX worked well for 2 years, but this past spring symptoms returned and we switched him to Remicade. He just had his 3rd dose. And it has worked wonders. I think part of what makes Remicade so scary is that it is given as IV infusions. It seems so serious. But, my son said the infusions are almost relaxing! He handles it so much better than the MTX injections done at home. He has had far less side effects from the Remicade as well.

I don't have experience with the other treatments you mentioned, but our GI is a strong ambassador for EEN. I know others have had great success with it. Good luck as you make these tough choices. I would just encourage you to try and see past the scariness of Remicade, and if you have a good GI rely on his/her advice. Take care!
 
Wait! Your GI has been treating your son with nothing but Prednisone all this time?

If this is the case I most certainly vote second opinion. All kids need some sort of maintenance plan. Steroids can work great as does EEN but like MLP said they are rescue plans. Get the inflammation under control until the maintenance plan can take hold.

Off my soapbox....

Maintenance: you have a very good handle on your options. I don't think there is anything wrong with wanting to try the immunomodulators first and then escalating to biologics if need be. Given recent results etc, our doc has discontinued the use of the thiopurines for all his pediatric patients male and female and has chosen to go with Methotrexate. You can give it a try but it does take up to 12 weeks to become effective so you are either signing up for another 12 weeks of Prednisone (with a taper of course) or EEN (again with a taper). See how that does and then if necessary escalate to Remicade. The only caveat to all this is that your son has been sick for some time now and you are missing out on growth opportunity and do you want him to feel poorly for another three months. The only caveat to biologics is once you sign on it is for the long haul. Unless there is an allergic reaction etc, if the biologics work, you stay on them. Coming off (and why would you if they are working with no adverse effects) and restarting runs the risk of building antibodies and failing the drug. So if you decide to go with biologics be sure of your choice.

There are some who are using EEN and diet to manage the disease (either cycling on and off or a 50/50 regime with special diet) but this is in the very early stages and there is little guidance on it. So if you are not at a center that is aggressive in this area you may find it difficult to mange the disease effectively.

FWIW - my oldest daughter went straight to Remicade and she is three years in remission and hardly even knows she has Crohn's anymore. No adverse effects what so ever.

My second daughter - a more mid to moderate case we started with EEN to induce remission while using Methotrexate to take over when the EEN was completed. She was dx'd January and she still isn't to remission. Our doctor said Methotrexate works as monotherapy in only 50% of cases. We have recently hit the disease with Entocort (she has Ileal Crohns) to see if that can help get things under control and help the Methotrexate do it's thing. If not we are moving to biologics and honestly can't wait.
 
Welcome

From your other post I believe you are also worry about drug access if family were to move back to India.

I believe aza or 6MP would be easier to access in India.
 
and oops..I see now that your boy is on Pentasa which is a very low level drug and not usually very successful with pediatric Crohns.
 
It is all scary.

I agree with much of what was posted above regarding Remicade being the better choice for good stable remission/less side effects.

If you are concerned about access in another country have you considered asking about Humira? It is the same type of drug as Remicade but is given by subcutaneous injection usually every other week at home. We were offered Remicade but chose Humira because of our distance to an infusion center. The drug is mailed to our home. Very convenient.

We tried Imuran (AZA) and my daughter developed pancreatitis from the medication after two weeks. Not good for us. Our GI stated that he would have to think very seriously about offering it to a boy considering the possible side effects.

We used 6 week segments of EEN to induce remission as opposed to pred. No side effects, but not easy.

I hope you can find a good solution that works for him.
 
momof8yrold said:
My son (8 year old) was diagnosed with Crohn's in April 2015. He was on a course of steroids (30mg. His weight was 50 lbs) for 8 weeks and then tapered. He was admitted to get IV steroids for 3 days. The steroids have definitely helped him, but he's still not in remission. Our doctor did C-diff tests couple of times and the results are negative. His symtoms are diarrhea, stomach cramps, loss of appetite and slow growth. His Crohn's is only in the colon (Crohn's colitis).

Recently we met our doctor again and he did the fecal calprotectin test. My son's fecal calprotectin is 920. It's too high and our doctor is strongly considering Remicade now. However, we are still thinking. I don't want to jump to Remicade. Somehow, my instinct is suggesting Imuran. (I know it sounds silly, but...I hope..you get my point). Doctor has told us to take the decision in a week's time. Meantime, we are going for the second opinion tomorrow at UofM.

I was considering the following options. Need your inputs..

1. To start entocort(budesonide) along with Imuran. As I understand entocort has less side effects and until Imuran kicks in, entocort can help control inflammation. One concern is, his crohn's is only in colon and I understand that entocort works mostly in Ileum (As told by my doctor). Has anyone with Crohn's Colitis have taken entocort? If not entocort, I dont mind him taking prednisone for a short time too(until Imuran kicks in)

2. Follow elemental nutrition along with Imuran. What are the options for elemental nutrition? My son is on partial elemental nutrition now. He drinks about 3 pediasure's everyday.

3. Try LDN. Is LDN given for kids? I have not much info about it.

4. Did anyone try fecal transplant for your kids? Can that be an option too?

5. Take Cipro along with Flagyl and Imuran (until Imuran kicks in). Our doctor rejected Cipro. According to our doctor, our son is too young to take Cipro. Has anyone given cipro to your kids at 8 years or younger?

Meantime, my doctor tested him for C-diff again and it's negative. He is slowly reducing weight and his stools are tarry. Does tarry stool mean there's blood in the stool?

I know too many questions. Thanks all for your time and the valuable inputs.

Current medications: 1000g Canasa(at night) 500mg Pentasa 2x a day, 1000 IUD Vitamin D3, 325mg Ferrous sulphate, Flagyl 250mg 2x a day, Prilosec (20mg)

Previous medications: Prednisone
Click to expand...

Hey sorry to hear about your sons diagnoses so young. I can shed some light on a few of your questions. As far as imuran and budesonide, it worked wonders for me for about 3 years and my site is in my colon as well. Also as someone said in Previous message Imuran is more likely to have side effects over remicade. I had to recently start remicade and have had no problems this far. And as you know minimal prednisone is the best so I would try the remicade especially since he is still having bone development. I was given to much pred And got osteoporosis from it.

I think your second opinion will make you feel much better with the decision you make. renicade may seem scary but you have more of a chance of side effects with the imuran than anything else. Keep in mind cancer chance raises from 2 in 100000 to 4 in 100000 so still really low.

As a long time user of Imuran and budesonide feel free to ask any questions! Best of luck
 
My experience with Remicade was not a good one.m I was infused with remicade over a series of weeks and ended up with Palmo-plantar pustulosis. Not fun. Extremely painful. During this struggle I visited the dermatologist 3 times before she told me the PPP was likely due to the remicade. You could imagine my frustration.

**DISCLAIMER** This was MY experience. I'm sure remicade has helped some people but I felt the need to share MY experience.

** Keep in mind one infusion of remicade costs about $3,500.

I wish you and your son the best of luck. I'm sorry that you both have to go through this.
 
I am sorry you are going thru such a hard time. We don't have experience with a lot of meds. Only with asacol, prednisone and Remicade. We decide to try remicade mostly because her Crohn's was moving to other places of her body fast. I did try natural remedies but it did not make a difference in disease progression. My daughter is mostly asymptomatic so we did not know how bad things were inside while she was feeling good. About remicade, it has been a miracle drug for her, she dos not have any side effects so far. I really hope that whatever med you choose, works good.
 
Hi and welcome! I responded on your other thread about the availability of drugs in India.

Here is a good presentation that explains the risks and benefits of various IBD treatments: http://programs.rmei.com/CCFA139VL/

For us, biologics have been an absolute miracle. My girls also have had basically no side effects with biologics, while they have had many with drugs like MTX. Our GI prefers MTX to Imuran and 6MP too - many GI's now believe it is safer than Imuran/6MP. For us, the disease was a lot scarier than the side effects of biologics and while we agonized and agonized about putting my daughters on biologics, it was the best decision we made and we have never regretted it.

My younger daughter did very well on Entocort, but was also on MTX and Remicade at that time. She does have Crohn's all through her colon but also in the last part of her small intestine.

Good luck!!
 
Oh wait...India? I am not really well versed with all of the particulars but what I can tell you is my daughter was supposed to take a mission trip and India was nixed by the infectious disease doc and the GI because of the higher rate of TB there and TB is the big no/no with biologics. This was almost 3 years ago so perhaps things have changed or maybe it was because of the particular area she was visiting. However, my husband's job was recently being relocated and I mentioned to the GI that India was on the able and he said, "I hope not...not with Remicade". Now that could have just been knee jerk reaction that we could work through but it might be something worth considering when choosing your treatment.
 
my GI told me entocort was not an interesting option for disease activity located in left colon and rectum. Prednisone is a better choice when these parts are involved.another poster mentionned liquid enteral diet, which are usually given as full food regimen for the day (no other food allowed) for remission induction.

about pediatric fecal transplant:
http://journals.lww.com/ibdjournal/...icrobial_Transplant_Effect_on_Clinical.7.aspx

http://www.seattlechildrens.org/healthcare-professionals/aar/2013/best-of/cures-for-crohns-IBD/

there is a sub forum on LND in the treatment section, but do not recall reading a kid's testimony.

wishing you well on your decisions.
 
Remicade ruined my life, and my marriage. It caused me to have congestuve heart failure and it took me 6 months to recover from all of the serious side effects. It was the worst treatment yet, and I cant tolerate any other treatment now.

penguin;886504]Why are you afraid of remicade vs the Imuran?
Make that list
The risk of cancer is much higher with Imuran
My kiddo started remicade at age and it was a miracle drug
No side effects.
We tried 6-mp for 8 months ( sister drug to Imuran ) and he never got better
Could hardly do anything and had to watch it goof around with his liver numbers
Most Gi won't give boys especially 6-mp or Imuran anymore.
They try mtx first which also only has a low success rate
Fecal transplant is still in clinical trials and experimental.
I know remicade sounds scary but honestly it has better success rate ( especially among the parents here ) with only good side effects -growth weight gain and a kid who can play and be normal
All of us were afraid of remicade
And once started all of us wished the drug would work forever.

Ldn is extremely mild drug which gives mild cases a little nudge in the right direction per our Gi . It suppresses serotonin to trick the brain to produce more .
Not messing with mood with my kiddo since serotonin disorders ( bipolar depression etc) are not fully understood plus it only helps for mild stuff by every study our Gi saw.

I know it's hard and I know you think you have a choice on which med
But you will soon find out it's the med that fixes your kiddo that chooses you.
You just want a med to work and keep working - none of the odds are good for that for kids with crohns .
Remicade let Ds swim competively - gain 20 plus pounds ( he was 50 lbs as well at age 8)
And grow .
He had a reaction to remicade after 8 infusions but he also is extremely allergic kiddo reacts to food, barium other drugs bees etc... It was a mild reaction so we switched to humira
Since starting biologics at age 8
He has grown 8-9 inches and gained 45 pounds.
And the important part gets to be a kid again.[/QUOTE]
 
To the poster above... how horrible. My heart goes out to you and I hope you can find a treatment that works.


As for my child, Remicade has been wonderful so far. No major side effects.
My girl was dx at 3 but started Remicade at 5 1/2 years of age. She also takes methotrexate and sulfasalazine. Yes I'm not crazy about all the medicine but it's about quality of her life.
My only job is to find options that might work for her and based upon research and doctors guidelines see if they can help.
We do they best we can as parents with the options we have.
Grace has also been thru othermeds before ( pred, EEN, ldn, Humira).
 
I was on Remicade for 5 years and loved it! I had a baby and that's the only reason I switched it up. It was too hard to get to the infusion site and have find a baby sitter for the day. Otherwise I did really well on it
 
Welcome to the forum, and I'm sorry your kiddo has to go through this. I think treatment decisions are very personal, not just because you have your own thoughts/feelings towards them, but because every Crohns patient is different. I think this is especially true for kids, because they are always in different stages of growth and change and what works one day seems to not work the next.

I had the same thoughts you did when my son was first diagnosed. I didn't want to go straight to Remicade though our GI did recommend it. We got hit with the news of the disease, and I had alot of fears about Remicade, perhaps unfounded, but that was just the way I felt at the time.

We started with Entocort (short term) and chose to start with Imuran (long term). I hated that too, but it seemed like the lesser of 2 evils. That may have been wrong, but like I said, that was our personal choice. Also steroids (like Pred and Entocort) alone only manage the inflammation/symptoms, they don't address the disease process, so I think you have to pair it up when you have an active disease.

Anyway he did OK on Imuran for several years, but it stopped working and he went into a horrible flare. He's now on Remicade (and still on the Imuran to give the Remi a chance to work). He's doing very well, appetite back, gaining weight, feels good... though he just finished his loading doses so time will tell. We have an appt. next week to check labs so we will know more how it's working on the disease process.

I'd be lying if I said that I was not constantly worried about the effects of these drugs... But sometimes you just need to make the decision based on the problem that is happening, and not the problem that "might" happen. For us, if we didn't deal with his disease quickly and properly, we would have ended up in a very serious situation.

As for the other options:

We tried LDN. I'm not sure how much it did for him - he was also on Imuran at the time so that could have affected the way it worked, and also we couldn't isolate any impact because we never did LDN on it's own.

Diet - We eliminated some trigger foods, and used supplements when he had probs with appetite, but he wouldn't go for SCD or anything overly restrictive so never tried it. I also think this is helpful to maintain remission, but perhaps not capable of achieving it. I have a cousin with Crohns who got into a full remission, and is able to maintain it (relatively) with diet and LDN. But she is older, and very disciplined, which is necessary. Alot of people do very well with diet. We were just not those people :)

Fecal transplant - I reviewed it, still experimental but worth exploring. From my research and early trial results, it isn't a "one and done" thing so you'd have to be willing to keep this up for the long haul. You could try to find a clinical trial - there are a few. I was never willing to do this as a DIY thing at home. I didn't want to be responsible for doing something wrong, but I'm a chicken that way.

Anti-MAP and SSI trials - also worth reading up on. Still in trials, but I am hoping that one of these will turn into something good for us.

There is definitely alot to consider. All you can do is research, ask a bunch of questions, then make the best decision you can for yourself and your son. I only sometimes regret my decisions :) But I don't think there's any way around that with Crohns - there are alot of options and none of them are perfect. Good luck and tons of support your way!
 
My experience with Crohn's is that every patient responds to treatment differently. My son was diagnosed at age 11, he tried Nutritional Therapy for 6 weeks which helped but he flared as soon as he started eating again. He was on Prednisone for a few months but it didn't help and the side effects were terrible for him. He was in the hospital for 12 days and he was not improving. I was hesitant to start Remicade because of his age and wanting to save it for later on in his treatment. We decided to go ahead with it out of desperation and it has been a miracle drug for him.
It took a long time to find the right dose and regimen for him. He is on a double dose every 5 weeks but it has made a huge difference. He plays sports, works out and has grown and put on weight. He has to watch how much fibre he eats but, other than a few trigger foods, he eats whatever he wants.
From my experience you should be open to all options and go with your gut. Good luck to you.
 
Big Remicade fans here too. DS had worked his way up by failing other meds. Remicade has given him his life back. I wish we'd have started it sooner and skipped all the hospital stays and surgery.
 
This has been a helpful thread. We have been slowly coming to the realization that our son was dealing with some sort of gi condition for a little over a year. This week the doc finally feels there is enough evidence to declare it CD. One of his first suggestions was to go with remicade, and we discussed that in length. But wanting to ensure we exhaust all the "non-chemical" options EN came up. He admits that there is not much of that done in the US, but is quite common in the EU and Canada. Being in the nutrition field I do have access to many journals and have been looking at these to try to make a logical decision vs an emotional one.

Has anyone looked at the EN option prior to remicade and what types of results did you see. Knowing that there are multiple products from polymeric to elemental formulas, etc is there one that appears to do better than others?

Thanks,
 
Een (formula only ) works similar to steroids
But is not meant as a long term solution.
The minute food is introduced above 10-20% all inflammation comes back

Partial en in addition to meds ( biologics etc) has shown a lot of promise

Kids tend to have severe agressive disease vs adults so the need for less is very real
En as a supplement boosts those meds to be more effect longer

Kids also tend to burn through meds faster since they are growing and their immune system is learning so to speak

Ds has been on een
Prior to remicade

Now takes humira plus mtx
Plus partial enteral nutrition ( over 50% calories) plus crohns exclusive diet

The key is finding the right med that works
 
Exclusive EN was the treatment recommended for my son when he was diagnosed. And it worked very well.

When he was diagnosed, he was on Flagyl thru IV for one week and then started on six weeks of exclusive EN, overnight thru NG tube. He ingested 3000 cal/night. During the day, he was allowed clear fluids only (clear pop, broth, popsicles, freezies, jello).

He felt better almost immediately. I can't say how much of an iimpact the flagyl had but, his symptoms disappeared within days.

After the six weeks, he continued with supplemental EN (1500 cal/night, 5 nights/week) and no other crohn's meds (he took nexium on the nights he used the NG tube because it gave him heartburn). He continued with this for two years, with no meds. However, while he was in clinical remission (no symptoms, gaining weight, etc.), MREs continued to show some simmering inflammation. When he transfered from his ped to adult GI, the new GI was uncomfortable with the constant inflammation and strongly recommended remicade. He's now been on remicade for two years.

He still drinks one to two Boost shakes per day.

Prior to remicade, the formula he used thru NG tube was Tolerex (made by Nestle).

You'll find info on EN in these two threads (links below) and in the Diet subforum (in the Parent's section)

http://www.crohnsforum.com/showthread.php?t=22753

http://www.crohnsforum.com/showthread.php?t=36345
 
Tesscorm:

Thanks for this info. I have been scouring the scientific literature for the best way to go and have seen many ideas and just as the hope of one grows, there is an other study that deflates.
 
I have nothing negative to say about EN. It has comparable success rates of inducing remission as do steroids, plus it provides nutrition, bowel rest and has healing properties with no side effects.

The weight my son gained while on exclusive and supplemental EN was healthy weight - ie muscular and developmental weight. As he found using the NG tube fairly easy, continuing with the supplemental EN for two years wasn't much of a hardship. He'd insert the tube immediately before going to bed and would remove when he woke. During the day, he ate a regular diet with only a few restrictions (ie no seeds, etc.).

There are some kids here who are on, or may try, going 50/50 EN/food. While it was never presented to us in this way (ie a percentage of daily calories), at 1500 cal/night, the supplemental amount was probably close to 35-40% of his total daily caloric intake.

The reasons he stopped this level of supplemental EN were only because, having started on remicade, his adult GI didn't feel the supplemental EN was beneficial... and, while I wanted my son to continue on with it for nutritional purposes, he was going away to university and didn't want the tube, pump, etc. So, we compromised on 1-2 Boost shakes per day.

I also read one study that showed continuing with supplemental EN (1200 cal/day) while on remicade boosts remicade's success rate.

The downside is that it is not an easy treatment. The exclusive period is very difficult, hard to remain compliant when you need to go weeks without any food. Some have difficulty with the tube and it can be a tough experience. The supplemental can be a bit easier but, if not thru NG tube, can be a constant battle to get in enough shakes each day.
 
Yeah, it is tough. :( My son was almost 17 when diagnosed and, although steroids were only vaguely offered, EN was his choice. Easier to be compliant when they are old enough to understand and when it was their choice. I don't know how old your son is, so that may affect your decision.

While the thought of inserting the tube is scary, in our case, I think my son was successful because of it. It would have been harder for him to drink the required number of shakes every day. The broth was also a huge help. It allowed him to take something to school and still 'eat' lunch with his friends (the school also agreed to keep a stock of freezies that he get at any time).

There are some kids who have tried 80/20 or 90/10 (EN/food). I believe there's been some success at achieving remission even with a small amount of food but, as you said above, I believe others have found that it is not as successful! :ywow: I'm pretty sure Crohnsinct and mr chicken (there may be others as well??) have some experience in using EN and food.
 
My son is 15 and has fistulating CD. We have probably known it was coming for a while, but really had not gotten to the point where the doc would want to take a hard stand. he has been on delzacol for a while and seems to help some. From the science I have see so far en may not be as successful with this type of CD as compared to others, but as noted earlier the data is not definite (that is the problem with biology - the subjects don't always read the book and know how they are to respond! rocket science is many ways is much easier!!!).

Our biggest challenge is to make sure we make the best long-term decision with as little emotion as we want him to have the best life he can for his life, not just the next year.

Thanks so much for your sharing and support.
 
Thank you all for your valuable time and comments.
We did meet the pediatric GI specialist at UoFM, Ann Arbor. The new doctor is also recommending Remicade for him. According to her, he was never in remission even when he was on full doses of prednisone (which is true). So, she doesn't want to start Prednisone again. Also, until Imuran starts working, we need another drug to support Imuran. Since, he failed Prednisone.., the only option for us is Remicade.
We need to decide and make an appointment at the infusion center. We are so confused now.
 
I understand the confusion. While our dr immediately recommended Remicade, we did press for other potential options and EN came out. Being a nutritionist, I started looking at the literature and below is a link to a review article. It can be confusing but may help shed some light and help you have questions to ask. As I was reading this I would be seeing that there may be hope depending on the types and severity.

http://www.hindawi.com/journals/grp/2013/482108/
 
Some of the maintenance meds (imuran, sometimes biologics) take some time to reach therapeutic levels and/or begin to work. Usually, a course of pred or EEN are used to induce remission and are started at the same time as the maintenance med. Hope is pred/een induces remission and, at that time, the maintenance med can take over.

Biologics can often work very quickly. The benefit of imuran with remicade is that it reduces the possibility of developing anti-bodies to remicade. It's not unusual for both to be used concurrently.

I don't have experience with fistulizing crohns, however, I'm sure I've read that remicade is considered to be the best treatment for it.
 
drbart86

Also known as mr chicken

My kiddo has been on een twice
It's not a matter of being hard but psychologically it is extremely isolating for a child.
Try to not eat anything for a 2-3 weeks that has wheat or milk and not eat anything that you can't verify what the label says....
This eliminates snacks , easy food etc...

School lunch is a social time
Snacks at most activities and sports
Parties at school and friends
Etc....
Knowing you have an end date such as 6-8 weeks is doable
But the desire to chew is very strong and eat even stronger

Ds was on een for 9 weeks the first time without food at do to avoid pred
This second time humira /mtx needed a boost so Ds was switched to een for 2-3 weeks
Then switched to partial en plus the crohns exclusive diet
And has food allergies so extremely limited on what he eats
Everything from scratch .
It does not work by itself for my kid at least

Found out the hard way - had to hold humira ( ear infection) and he flared horribly despite the diet .


Remicade was great for Ds
It was a miracle drug and worked wonders for him
Good luck with the infusions
 
Last edited:
So sorry that both of you have had to find this forum and are now having to make these difficult decisions about treatment.

My daughter was very sick when she was finally diagnosed, so we had to make big treatment decisions very quickly. Our doctor strongly advocated for a "top-down" approach, where you start with biologics first. We were very uncertain about what to do, especially since we knew so little about IBD going in. My husband and I spent 5 days reading every journal article we could find about Crohn's treatment, along with reading extensively on this forum. After those five days, we decided that we agreed with our doctor, and my daughter had her first Remicade infusion. Almost a year later, I still think that was the right decision for my daughter. That said, Remicade wasn't a silver bullet on its own. She ended up needing months of EEN and budesonide, along with the addition of methotrexate, before finally reaching something close to remission. She's doing very well now on Remicade and MTX.

Of course I do still worry all the time about the long term side effects of her treatment, but the long term effects of undertreated Crohn's worry me even more.

I hope that whatever treatment you decide on works well for your kids!
 
Update on my son...

We got the second opinion from the University of Michigan and the the new doctor also recommended Remicade. The new doctor verified my son's diagnosis again (She got the tissue samples from our hospital and re-confirmed the diagnosis).

We finally had to accept and my son got his first dose of Remicade this afternoon (150ml). They pre medicated him with benedryl and Tylenol. The infusion went smooth without any reactions or side effects (Thank God). I'm crossing my fingers and waiting for the magic drug to show it's magic on my son.

His second dose is 2 weeks from now and I'll keep you guys posted about it.
Thanks a lot for your suggestions. I don't feel alone anymore :)
 
@momof8yrold, I'm glad to hear that your first infusion went well. I too was very apprehensive at first about my son starting Remicade (he's on Imuran too), but he is doing so well, and we are so thankful for that. He was pretty wiped out after loading doses, and it took a bit of time for him to start improving, but now on maintenance, doing amazing and infusion days seem to be much easier on him. He had a check up last month - labs are all back to normal and he's gained back all the weight he lost over the last year. I hope for the same results for you and your son. It is a very difficult decision, so I hope you see some success and your kiddo is feeling good soon. GOOD LUCK and keep us posted!
 
It's a hard diagnosis to accept, but on the other hand it is good to know what is wrong so the proper treatment can be given. My son had his 3rd loading dose in Aug and has an appointment on the 20th for his next infusion. His numbers improved right away, but his actual symptoms improved gradually. Do give it some time, but I hope your son responds well. Good luck!
 
Thanks a lot everyone.
My son got fever (out of no where) yesterday night. He did have fever tonight as well. I rang up to the GI nurse and she suggested me to meet his physician immediately. We met his GP (or Physician) too. My son doesn't have any other symptoms. He has fever and very little head ache. So, the GP asked us to watch for symptoms. I'm really worried now.

Did any others experience this?His first infusion was on last Friday. It's been 5 days since then. As I said in previous posts, his infusion went well. He is due for his second infusion next week.
 
We always recieved a discharge sheet with infusions that included concerns we should contact the GI about divided up into days, like 1 day out, 5-7 days out, 14 days out. So good call on contacting the GI.

My son never got fevers with remicade but he did get fevers with CD flares in the beginning. The were always in the evening and usually around 100° F a lil more sometimes.

Did the GP run a CBC to see if there might be infection?

I'm sure others will be along with their experiences shortly. I hope his fever subsides quickly.
 
Remember normal 8 year olds get normal bugs
So DS had a lot of fevers when he was on remicade humira etc..
Always puts me in a panic
9/10 it's a virus or strep it ear infection that the body was fighting off so he didn't have other symptoms yet
That said
Most of the time if the ped /Gi /Rheumo wasn't sure why for the fever they had us get bloodwork at least
It's hard not to worry but remember he is a kid first
And kids get lots of unexplainable viral crude .

:hug:
 
My daughter is on Privigen, not Remicade, but in the beginning she would get low-grade fevers 2 days post infusion. It was her normal. As time goes on you will be able to determine what is normal for your son and what is not. I have given Tylenol and Benadryl as post-meds to help deal with those after infusion side effects.

Or, like MLP said, could be a bug of some sort. I've been dealing with one myself for the past week. So much going around!
 
As I mentioned before, my son just started on Remicade. He had his second infusion last week. He's not better yet and we are waiting for the miracle to happen. During the second infusion, the nurse said she needs to do the regular blood work. This morning I get a call from the doctor saying "my son's liver enzymes are significantly elevated". He wants to meet my son next week to check the levels again.

His liver enzymes were normal in Jan'15 and Jun'15. I'm so concerned now. This disease is so tough. I'm still trying to understand what's happening.

1. Can the Remicade elevate the liver enzymes?
2. He was given Tylenol and Benedry before blood test. Did any of the medications cause it? I know it's highly unlikely, because he took the medicine about 10 mins prior to the blood test.

Did you or any of your kids experience this? Is it a cause of concern?
My son was never on Imuran, 6MP.

My son is diagnosed with moderate to severe Crohn's Colitis in April 2015. He had 6 months of symptoms prior. Waiting for his remission.
Past Medications:
Prednisone (30mg, tapered). He failed Prednisone
Current medications: Remicade (2 infusions done, 5ml/kg : No major breakthrough yet), Pentasa 500mg 2x a day, Prilosec 20mg, Vitamin D and Iron supplements
 
Abx can cause high livers numbers btdt x2

Make a habit of asking for the actual blood test results if you don't have access to a patient portal
Track his numbers so you know how is trending and what is his norm vs the average persons norm

DS had high ast/alt with 6-mp (3x the max. Value ) that was when the Gi got concerned and we got a call within an hour of the blood draw to stop the meds.

I think remicade can cause liver increases but it's not common as far as I know
Also liver issues are common with Ibd in general .

Pre meds should have affected his liver numbers
That quickly

Thankfully your Gi is on top of things and hopefully things will calm down soon
 
drbart86 said:
My son is 15 and has fistulating CD. We have probably known it was coming for a while, but really had not gotten to the point where the doc would want to take a hard stand. he has been on delzacol for a while and seems to help some. From the science I have see so far en may not be as successful with this type of CD as compared to others, but as noted earlier the data is not definite (that is the problem with biology - the subjects don't always read the book and know how they are to respond! rocket science is many ways is much easier!!!).

Our biggest challenge is to make sure we make the best long-term decision with as little emotion as we want him to have the best life he can for his life, not just the next year.

Thanks so much for your sharing and support.
Click to expand...

hi! i am also being reviewed for fistulating cd, though my tests came back negative for crohns, i have a bad fistula.

i would be interested in any learning tools you can direct me to, am just starting to do research in terms of meds, etc.

does delzacol close the fistulas?

my dr is recommending remicade though i am interested in other options
 
Both of my daughters have had elevated liver numbers on occasion. One on Remi, one on Methotrexate. Each time we were told to repeat bloods the next week and all was fine. Blips sometimes happen. Good to check though.
 
My daughter currently has elevated liver enzymes (for the first time!). I freaked out too till I got a message from the doctor that it was probably because of the antibiotics she's been on. We're going to test again in a few weeks, but were told it's probably just a blip and not to worry.

Hang in there!
 
momof8yrold said:
My son (8 year old) was diagnosed with Crohn's in April 2015. He was on a course of steroids (30mg. His weight was 50 lbs) for 8 weeks and then tapered. He was admitted to get IV steroids for 3 days. The steroids have definitely helped him, but he's still not in remission. Our doctor did C-diff tests couple of times and the results are negative. His symtoms are diarrhea, stomach cramps, loss of appetite and slow growth. His Crohn's is only in the colon (Crohn's colitis).

Recently we met our doctor again and he did the fecal calprotectin test. My son's fecal calprotectin is 920. It's too high and our doctor is strongly considering Remicade now. However, we are still thinking. I don't want to jump to Remicade. Somehow, my instinct is suggesting Imuran. (I know it sounds silly, but...I hope..you get my point). Doctor has told us to take the decision in a week's time. Meantime, we are going for the second opinion tomorrow at UofM.

I was considering the following options. Need your inputs..

1. To start entocort(budesonide) along with Imuran. As I understand entocort has less side effects and until Imuran kicks in, entocort can help control inflammation. One concern is, his crohn's is only in colon and I understand that entocort works mostly in Ileum (As told by my doctor). Has anyone with Crohn's Colitis have taken entocort? If not entocort, I dont mind him taking prednisone for a short time too(until Imuran kicks in)

2. Follow elemental nutrition along with Imuran. What are the options for elemental nutrition? My son is on partial elemental nutrition now. He drinks about 3 pediasure's everyday.

3. Try LDN. Is LDN given for kids? I have not much info about it.

4. Did anyone try fecal transplant for your kids? Can that be an option too?

5. Take Cipro along with Flagyl and Imuran (until Imuran kicks in). Our doctor rejected Cipro. According to our doctor, our son is too young to take Cipro. Has anyone given cipro to your kids at 8 years or younger?

Meantime, my doctor tested him for C-diff again and it's negative. He is slowly reducing weight and his stools are tarry. Does tarry stool mean there's blood in the stool?

I know too many questions. Thanks all for your time and the valuable inputs.

Current medications: 1000g Canasa(at night) 500mg Pentasa 2x a day, 1000 IUD Vitamin D3, 325mg Ferrous sulphate, Flagyl 250mg 2x a day, Prilosec (20mg)

Previous medications: Prednisone
Click to expand...

My understanding is that I have Crohn's Colitis and I was on Entocort earlier in the year.

2
 
Do you have an actual value and range? We've had blips here too. The next set of labs may be completely normal. If you haven't yet, maybe consider starting a spreadsheet and track all lab values from dx and into the future. It can be helpful.

I hope Remi works soon!
 
Oh yeah blips here as well with both hubby and son.
I keep a spreadsheet of labs like Mehita, helpful in tracking patterns or even what's normal for my son
 
Hi!

I'm back. But, things are not so great here yet. My son has his second set of blood work done in the second week of November (15th Nov). Again, his liver numbers were elevated (about 120 range is what my doc told). Now, our GI wanted us to meet the hepatologist just to keep an eye on the liver enzymes. His bilurubin is normal. His ALT and AST were elevated. He was still having a lot of symptoms, he wasn't even eating 1000 calories in a day. Couple of days later (around 17th Nov) , he started vomiting and all he could take was 1 tablet with a little water. He was hardly eating around 500 calories. The dietitian gave a prescription for 1.5 pediasure. He couldn't take that too. We were literally waiting for his 3rd infusion which was on 28th Nov.

But by 21st Nov, he was too weak and we ourselves said..we want to admit him. Our GI was on holiday( thanksgiving week)'and the nurse wasn't there too. Finally, on call GI asked us to get his stool work done. On the Thanksgiving day , we got to know... He was positive for cdiff. His infusion was postponed and he was on a 14 course of flagyl. He started feeling better after starting flagyl. I read through a lot and started florastar probiotics along with flagyl.

He is now -ve for cdiff and had his third infusion today ( Dec 19).

The first 5 mins into the infusion, he had severe flushing and red face. I rushed to the nurse and she stopped the infusion. His vitals were normal. He was premedicated with benedryl and Tylenol. They stopped the infusion until they heard back from the on call GI doctor. Later, they restarted the infusion. He did fine after though. But it was so scary.....

Meanwhile, we met the hepatologist and he has asked for repeated blood work. He told...elevated liver enzymes could be because of remicade, cdiff or autoimmune liver disease( I don't even want to think of it. Please......)

My concerns are...

1. Did any one have elevated liver enzymes when you had cdiff?
2. Is flushing common reaction of Remicade? Should I be concerned?
3. Since my son's infusion was postponed for 3 weeks, did he have a reaction to it?
4. He's not achieved remission yet. How fast or how long does it take for the Remicade to work?

BTW, after the course of antibiotics... my son's appetite is getting better.

I feel so relaxed after sharing my thoughts here...Thank you ladies...you don't know how much of a support you are for newbies like me.
 
1. No elevated liver enzymes with CDiff here. My daughter had CDiff while on Remicade, but we didn't have to postpone the infusion. That might be because she'd already been on antibiotics for over a week, I think.

2. Sounds like an allergic reaction to Remicade. My daughter has never had one, but there are parents here whose kids have - Clash, my little penguin.

3. I guess it could be from the postponement of Remicade...seems unlikely if it was just three weeks. Some people just react to Remicade, even if they haven't stopped and restarted it.

4. It can take a while to feel better on Remicade - for some kids, 3 or 4 infusions. Possibly longer for your son since he stopped it for a few weeks. He may also need a higher dose or more frequent infusions. One of the nicest things about Remicade is that you have some flexibility with the dose and frequency. My daughter went from 5mg/kg to 7.5mg/kg to 10mg/kg before it really helped. It took 4 infusions for her.

Hope you get some answers on the liver numbers, good luck!
 
So sorry that things have been hard this month. I don't know the answers to most of your questions except for the last one. While some people do respond quickly to Remicade, for others it can take longer to start working. In my daughter's case, it took about 6 months, and while we waited, she needed EEN and budesonide, and her doctor also added methotrexate. She also needed to have her Remicade dose and frequency increased along the way. One year after her diagnosis, she's now on just Remicade and methotrexate, and doing very well.

I hope that your son starts feeling better really soon!
 
DS had a reaction (2 of them) to remicade after 8 months.
He never stopped remicade
Typically If they see a reaction it happens after stopping ( more than 8 weeks )
Or on the third infusion

Flushing can be part of a reaction or the rare could have been too high
DS had raised alt /ast but only while on 6-mp and we had to stop the drug


Hope things improve
 
My liver enzymes went up a little on a/b's. There are some things we can do with foods we eat to support the liver too, though not being a dr I am hesitant to suggest anything. Perhaps searching for a book on holistic treatments and finding something which seems reasonable and asking dr about it. A family member had elevated levels after meds
 
Update: After his C diff was treated, his liver enzymes came back to normal. May be.., the cdiff elevated his liver numbers....

Still waiting for his remission...it's been more than a year :(
 
Hi, I'm also from Michigan, I absolutely won't give my son Remicade, I rather do 6mp and try everything before Remicade, he was on Flagyl and cipro for 8 year due to fissures in ano. 2weeks ago he had a colonoscopy since he developed diarrhea with no pain, he was going to the bathroom every 2hrs. His Colonoscopy results were entire colon swollen colitis Doctor suspected c diff. Results came positive to c diff colitis and started him on vancomycin 4 times a day for 14 days. We are in the 12 day of treatment. And he feels much better, he gain weight and has more energy. He had crohns since he was 6.nhe is 16 and 11 months old .
Second opinion at mayo clinic. 10 years ago the dr told us not to put him on Remicade so he was in 6mp and asacol. Them 6mp and Flagyl , then only Flagyl and cipro every 6 months each. And he was like that for 5 years until he started having some loose stools. No pain. Now he is better. But fir sure no Remicade. As of now even if the dr says yes there are other options.
 
Lizette
I am glad flagyl and cipro have worked for your Ds
But they also have serious risks with them when used long term
Is there something very specific that has you concerned about remicade ?
Many many kids and adults have used remicade for years without any issues
And are happily in remission


Hope your kiddo continues to improve
 
Hello my little penguin, you are right about cipro and Flagyl , that's why we had c-diff because of the Cipro, and I know the side effects, which are not as bad as Remicade. In my opinion there has not been enough studies about Remicade after certain period of use. I know of cases to close to my what Remicade cause in the infusion, my own niece almost die in one of her infusions, I think to use Remicade this has to be the last resource to use if any of the other medications failed. I just want to give my son the chance to try other things before Remicade. When you come from a family of phisicians, you know what all this medications can do. My biggest concerned is I have not find any kid that has use Remicade more than 10 years so we don't know what effects that can cause, If for some people has worked, I'm happy for them. I rather use other methods until he is an adult and maybe at that time there is other medications or maybe Remicade has improve their studies. What did they use to do before Remicade was in the market. They had other medicines, and I know because my brother has crohns since he was 18 he is 48( yes he had his colon remove 8 yrs ago but before that he was not in Remicade because it was not in the market, and he had a good life, and his was worse than my son .
Thank you
 
Lizette said:
What did they use to do before Remicade was in the market.
Click to expand...

Steroids and surgery. From the studies I have read the introduction of biologics has cut the surgery rate for kids from 70% to 35%.

I think it is great if you could use a step up approach to therapy and not have to jump to the highest part of the pyramid right out the gate. I totally support questioning the docs and if you have time trying things a little more conservatively. We were not that lucky with my older daughter who was admitted to PICU with her fist flare and was septic. We had to treat aggressively and fast so Remicade it was.

However, even with step up, you do always have to keep your eye on inflammation and know when it is time to say when. We just had that situation with my younger daughter. We have been using diet, methotrexate and Entocort for over a year and her inflammation hasn't budged. Given my older daughter almost died because of untreated inflammation and she has had a great experience with Remicade, I was more than happy to approve the escalation of therapy.

No drugs have a great safety profile. I for one am more afraid of the liver damage that methotrexate can do than I am of the Remicade risks and side effects. There are many, many studies on Remicade safety. True not a lot of kids have been on it for 10 years yet so I guess we will have to see and continuing to make the best decisions we can for each situation we find ourselves in. I wish no one had to make these decisions!
 

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