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Crohn's Disease Forum » Parents of Kids with IBD » Help needed in deciding the medications. Doctor is suggesting Remicade.


 
09-03-2015, 01:23 AM   #1
momof8yrold
 
Join Date: Sep 2015
Location: Novi, Michigan
Help needed in deciding the medications. Doctor is suggesting Remicade.

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
09-03-2015, 04:25 AM   #2
my little penguin
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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.
__________________
DS - -Crohn's -Stelara
09-03-2015, 04:33 AM   #3
my little penguin
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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 .
09-03-2015, 07:12 AM   #4
CrohnsKidMom
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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!
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Son diagnosed with Crohn's March 2013, at age 8
09-03-2015, 07:36 AM   #5
crohnsinct
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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.
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
09-03-2015, 08:48 AM   #6
Catherine
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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.
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
09-03-2015, 09:10 AM   #7
crohnsinct
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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.
09-03-2015, 01:29 PM   #8
Pilgrim
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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.
__________________
Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
09-03-2015, 01:43 PM   #9
Ian_H
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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
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
__________________
Ian

Remicade q6wks
Azathioprine 150 mg
Ferrous Gluconate
Vitamin D2 50,000 units weekly
09-03-2015, 02:42 PM   #10
Mag8888
 
Join Date: Sep 2015
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.
09-03-2015, 02:57 PM   #11
araceli
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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.
__________________
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
09-03-2015, 06:00 PM   #12
Maya142
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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!!
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
09-03-2015, 08:26 PM   #13
crohnsinct
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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.
09-03-2015, 10:25 PM   #14
Lady Organic
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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/F...linical.7.aspx

http://www.seattlechildrens.org/heal...or-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.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
09-03-2015, 11:47 PM   #15
Guest33
 
Join Date: Sep 2015
Location: Alturs, California
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]
09-04-2015, 01:09 AM   #16
Farmwife
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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'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
09-04-2015, 08:06 AM   #17
JaimeM
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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
09-04-2015, 11:06 AM   #18
theresad
 
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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!
__________________
Mom of son with Crohn's Disease
DX'd 2011 @ age 17

Current Meds:
Remicade (2015)
Imuran 100mg (2012)

Previous Meds:
Endocort
Lo Dose Naltrexone

Current Supplements:
EPA/DHA
AKBA
Iron
Vitamin D
ALIVE multi
Metamucil
Probiotics
09-05-2015, 10:45 AM   #19
jcjensen
 
Join Date: Apr 2013
Location: Macklin, Saskatchewan
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.
09-15-2015, 07:05 AM   #20
Mehita
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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.
__________________
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
09-17-2015, 09:55 AM   #21
drbart86
 
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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,
09-17-2015, 10:13 AM   #22
my little penguin
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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
09-17-2015, 10:27 AM   #23
Tesscorm
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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
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
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
09-17-2015, 10:39 AM   #24
drbart86
 
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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.
09-17-2015, 11:38 AM   #25
Tesscorm
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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.
09-17-2015, 11:49 AM   #26
drbart86
 
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That's what our doc said, kinda hard as we like our food so much!
09-17-2015, 01:49 PM   #27
Tesscorm
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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! I'm pretty sure Crohnsinct and mr chicken (there may be others as well??) have some experience in using EN and food.
09-17-2015, 02:13 PM   #28
drbart86
 
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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.
09-17-2015, 02:17 PM   #29
momof8yrold
 
Join Date: Sep 2015
Location: Novi, Michigan
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.
09-17-2015, 02:24 PM   #30
drbart86
 
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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/
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Crohn's Disease Forum » Parents of Kids with IBD » Help needed in deciding the medications. Doctor is suggesting Remicade.
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