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My 8 year old boy diagnosed with Crohn's recently. Suggestions and help needed.

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Crohn's Disease
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Posted 6/29/2015 3:37 AM (GMT 0)
Hi all,

I'm the mom of an 8 year old boy who was diagnosed with Crohn's after 6 months of suffering.
Let me give you a brief about his background. We are Indians who moved to USA in 2012. We are vegetarians and he is a full term healthy baby. He was not on antibiotics and was never sick. We do not have any family history of Crohn's. We are hearing about this for the first time. Also, his eating habits were very healthy. He never ate junk food. We do not know how he got it. At the time of diagnosis, he weighed 48lbs.

We went in and out of the hospital from Sep'14. His symptoms were skin rashes, tummy ache and loose stools. He used to wake up couple of times at night to poop. He used to poop 5 times a day. Later, we started noticing blood in his stools (about 2 drops in each BM). Finally in January, we met a pediatric GI and the GI didn't suspect IBD, as his inflammation markers were normal. He was slightly anemic too. His CRP was about 0.7 and ESR about 18. ESR was slightly high though. We did all the tests and finally GI recommended the colonoscopy and endoscopy. He was scoped on 15th April 2015. Doctor said, he is inflamed very badly in the colon. Most of his colon is inflamed. His Ileum is clean and biopsy report came as Crohn's disease. Doctor said it's moderate to severe. He has inflammation in the sigmoid, descending and transverse colon. Later, an MRE was done to check his small intestines. His small intestine is clean. Doctor started him on prednisone (20mg), Pentasa (500mg) twice a day, Flagyl (250mg) twice a day, Prilosec (20mg) in the morning, 325mg Ferrous sulphate.

After 2 weeks on prednisone and no improvements, he was admitted for IV steroids. He was in the hospital for 3 days and was given 30 mg of IV steroids. He was then asked to take 30mg prednisone for a month and taper it 5mg a week. He is currently on 10mg Prednisone. His stomach aches have reduced and he doesn't get up at night to poop. However his stools are still not formed.

In between, the doctor found out that his Vitamin D is very low and put him on 1000IUD D3 and asked him to stop taking milk. He takes Pediasure now. He is still bleeding and hence doc asked him to take Canasa suppositories (1000mg), once a day.

My concerns are:

1. Is it normal to bleed even after a dose of prednisone?
2. He still complains of stomach pain every day. Is this normal? His stomach pain is generally before he gets poop.
3. He still has urgency issues. Is this normal?
4. Our GI doesn't want him to start stronger medications at this point. Do you think, we should go slow or take a faster approach.
5. We did have a follow up couple of days back. His ESR is reduced to 5 now. His hemoglobin is 13.7 and there is an improvement in Vitamin D too (not normal though).
6. We are not able to understand if he's improving or not.
7. I read a lot about fecal calprotein. Our doctor hasn't done it. Is it needed?
8. Our doctor is against probiotics. However, we are giving him Garden of Life, kids probiotics. Also, I give him home made yogurt everyday. Do you recommend any probiotics.

Current medications: 10mg prednisone (tapering), 500mg Pentasa 2x a day, 1000 IUD Vitamin D3, 325mg Ferrous sulphate, Flagyl 250mg 2x a day, Prilosec (20mg)
Posted 6/29/2015 4:14 AM (GMT 0)
I'm sorry to hear about your son being diagnosed. I'll try to answer your questions and give you some advice from what I've learned over the years.

1. Yes, it's possible to bleed even after taking, or while taking, prednisone. Prednisone is good at reducing inflammation quickly, but it doesn't heal ulcers very well. That means his inflammation may be reduced but the ulceration of the mucosa may still bleed.

2. Yes, he can still have stomach pain. See above.

3. Yes, same as above. Plus, if he has inflammation in the rectum, he can feel like he needs to go to the bathroom even when the rectum is empty. This is called tenesmus and is common when the rectum is inflamed.

4. I disagree with the GI. In fact, I'm concerned that the GI prescribed Pentasa. Research the last 5-10 years has shown Pentasa does not help with Crohn's disease, especially more severe Crohn's disease. Most IBD specialists have stopped using it except in very select cases. This makes me think your GI is not up to date in his practice and is not able to care for your son properly. In your son's case, given the severity of the disease and the incomplete response to prednisone, I strongly recommend you move him to a medication like Remicade, and quickly, before too much permanent damage is done. The quicker you get on Remicade, the more chance it has to work. The longer you wait, the more permanent damage can be done to your son's colon. I recommend you find a pediatric GI who has a lot of experience with IBD. Do not go to just a "regular" GI.

5. It is good to monitor ESR, CRP, and hemoglobin, but those are never full indicators of what is going on inside. They are only small pieces of the puzzle. You must also take into account how he is feeling and what his colonoscopy looks like. Another good "marker" test (meaning it can tell you what is going on inside), is fecal calprotectin (a stool test to measure the amount of calcium protectin).

6. See #5.

7. See #5.

8. There is very little data at all that shows benefits of probiotics. And nobody knows which one might help your son. There are lots of anecdotes of people seeing benefit from probiotics. There are also some anecdotes of people trying probiotics and getting worse. My advice here is to feel free to try them and see; that's the only way to know; but don't expect miracles from them.

So overall, I suggest you find a pediatric GI specialist and get your son on a stronger medication while he tapers off the prednisone.

May I ask where you live? What state and city?
Posted 6/29/2015 4:40 AM (GMT 0)
Thank you Beave. We live in Michigan.

I have some questions with Remicade though. Once he starts, does he have to be on it forever. How about the doctor trying 6mp or imuran before remicade? Isn't he too young to start remicade?
Posted 6/29/2015 5:13 AM (GMT 0)
He is not too young to start Remicade. It is approved for children over the age of 6, I'm pretty sure.

He could try 6mp or imuran before remicade, yes. The concern there is two-fold: One, those meds can take a few months to start working (usually 2-4 months), and that could be too much critical time lost. Two, they're generally considered to be a level below Remicade in terms of effectiveness.

As for being on Remicade forever, that's unlikely - but it would actually be a good thing. That would mean it was working and that he was tolerating it well! But try not to think of it in those terms. Think of the short term - what are we going to do for the next couple of years? In that case Remicade is the best answer (although admittedly not a perfect answer, it doesn't work for everybody). In the long term, you can't predict as well. He might be on it for 10 years or more (I know a guy who has been on it over 15 years now). He might only be on it for a year or two before he develops antibodies to it. He might only be on it a year or two before a much better medication comes out on the market. In five years, there will likely be at least five or ten new Crohn's treatments, if not more than that. So focus on what is the best course of action for the next couple of years, and understand that treatments will change and get better and more options will be available in the near future.
Posted 6/29/2015 5:17 AM (GMT 0)
The University of Michigan in Ann Arbor has a large IBD team, including a few pediatric IBD specialists. Any way you could see one of them?

http://www.med.umich.edu/ibd/faculty/index.html
Posted 6/29/2015 12:21 PM (GMT 0)
I am sorry to hear about yous son's diagnosis, who is just 8 years old, and the hospitalizations and medications he has been going through. I wish him all the best, and quick recovery.

If it is not for change in food, is the cause due to weather or food contents like cow milk, more cheese, chips, pop corn, colas etc.? Is pred causing any side effects? My heartfelt regards for such a young boy.
Posted 6/29/2015 1:28 PM (GMT 0)
All the above but I will add that you should rsearch the specific carb dirt.( SCD) and incorporate that in the treatment plan. I would also consider LDN (low dose naltrexone).
Best of luck!
Posted 6/30/2015 12:37 AM (GMT 0)
Beave has given you some good advice. I would also suggest finding the best pediatric GI you can find. Try to get a recommendation.

I'm also concerned that he's on Pentasa. Pentasa is considered a pretty much useless med for Crohn's.

I would also suggest trying 6mp, Imuran or methotrexate before considering a biologic. Only because of his tender age.

It's a tough decision, but you want to be able to control the disease with the best effective treatment possible. The risk in trying to figure that out is under medicating. You don't want that either as then the disease could do it's damage at that point.
Posted 6/30/2015 12:57 AM (GMT 0)
I think I agree with trying an immunesuppressant before a biologic. I must admit I have no idea what these 5-10 new treatments for Crohn's are going to be in the next 5 years, though. Anyway, your boy is only 8, there aren't very many meds for Crohn's right now, and he should not burn through them too fast. If I had a child that young with Crohn's, I would put them on an elemental diet until the immunesuppressant took effect - much, much safer than steroids.
Posted 6/30/2015 1:54 AM (GMT 0)
Hi,

My heart goes out to your son. I truly hope that the prednisone helps him. Have you talked to his doctor about being on a veg diet? I'm asking because salads are very hard on me. (ie string in celery doesn't breakdown) Flagyl can also cause diarrhea. As you go along, you will learn what bothers him more than others.

Its hard to say what age is safe for a child to start remicade or MTX, etc.. Everyone has a different opinion, but I think your pediatric GI is playing it safe. Prednisone has been around for years, and if he can get him into remission on it along with the flagyl (for the lower end) then so be it. Remicade is a miracle drug, I agree but what if he develops Lupus from it? Then he will be on prednisone and MXT to combat that. I've been there and done that.

Keep a journal of his symptoms and bowel movements. Is it water or pudding substance. Mucas, blood if so how much a tsp? These are the things that will help put the puzzle together with your doctor.

I wish you all well.

Julia
Posted 6/30/2015 6:18 AM (GMT 0)
Beave - We are planning to book an appointment with an IBD specialist at Ann Arbor. Hope to get an appointment soon.
Posted 6/30/2015 6:43 AM (GMT 0)
Cdinhyd - thank you. He did have a lot of the side effects from the steroids. Thankfully, they are wearing off now.

73monte - Hopefully we'll find the right doctor soon. Thanks for your inputs.

Nicecupoftea - Thank you. I would consider elemental diet too. But, it's heart breaking to see my boy like that. He is a die hard foodie. I love cooking and I really can't see my son not eating anything for 8 weeks. But. ..anything for his health. If the new doctor decides that is the correct treatment, we'll go ahead with it.
Julia Hill - Thank you. We are maintaining a food chart. I have done a crazy study about the foods that he could eat. I don't give him salads or fresh fruits. I cook the vegetables thoroughly. Also, he doesn't take any whole grain like wheat, barley, oats or quinoa. He eats white rice or things made using white rice thrice a day. I started giving eggs to him recently. He seems to take it without much problems. I have stopped milk. He takes soy milk, pediasure and home made lactose free yogurt everyday. Sometimes, cheese. I avoid legumes and nuts. I have met the dietician couple of times and made sure, he eats safe foods. I love cooking and I cook all the meals fresh for him. I make sure he eats clean. He was a clean eater before too. So, not much of a problem.

pmedic: I read about SCD. But, being a vegetarian, I think it's very hard. Also, we eat a lot of rice. I don't know if I can cut rice from my son's diet. He loves to eat rice. Also, he doesn't like to eat salads. Has anyone modified the SCD diet to include rice?

Thank you all for your inputs.
Posted 6/30/2015 1:44 PM (GMT 0)
Yeah, the elemental diet isn't fun :-/ But apparently children are more tolerant of the diet than adults are. (Confession time: I did one and only lasted for 2 weeks.) And some children really don't seem to care much about food or eating at all (my younger nephew is one of them). However, if your boy enjoys eating then it's definitely going to be much tougher. All I can suggest - if you go down that path - is giving him other treats to make up for the lack of palatable food.

PS: Don't cut rice from your son's diet. IMO, the SCD diet is far too restrictive a diet for children. It's also outdated by now anyway. Rice and potatoes are fine.
Posted 7/1/2015 12:45 PM (GMT 0)
I am sorry you and your child are going through this. At this time you need to educate yourself on so much. The disease, medication and diet.
Please take some time and look into SCD. It has proven effective for 10s of thousands of folks. And seems to be most effective for children. After doing SCD and healing all most all children introduce back things like rice, but for SCD to work you need to give it up until there is healing. Diet like all the other decisions is tough. All you can really do is educate yourself until you feel you are informed enough to make the best choice for your family.
If you are really interested in this topic start with reading Breaking the Vicious Cycle. It will help you to understand the science. If you need more science I have lots of recent research I would be happy to send over. If it makes sense and you want to continue, join the SCD facebook group. There are well over 4000 members on this page. There many folks who have similar situations. Ask questions regarding their experience treating their children. If that makes sense, then go over to pecanbread.com. This is a site for parents who are treating autism with SCD, but there are still quite a few treating IBD. You can talk to parents, and get their first hand experience and results. Finally there is a new SCD vegetarian site on facebook. This is just being started, but that might give some insight.
I would also look into LDN. It has some great results, and is going through the FDA process right now to be sold as a Crohn's treatment. I would also look into fecal transplants. This too is getting great results.
I am not saying to ignore your docs advice, and perhaps drugs are required right now, but if I were you fighting for the health of my child I would for sure fully educate myself on the above so you can make an informed decision.
BTW - I have been doing SCD for years, and I eat Indian food all the time. Dishes like Sag paneer, and tons of others. Dahl, ... If you join the SCD facebook site you can talk to Indians in US and India to get their advice and personal experience.
No matter what you decide I really hope you find a healing path very soon that works for you
Posted 7/1/2015 3:02 PM (GMT 0)
The SCD is an old diet based on outdated principles which is quite likely to lead to nutritional deficiencies or weight loss unless you are extremely careful in how you follow it. For vegetarian people it must be even harder to get all the required nutrients. No way could I recommend this diet to an 8-year-old vegetarian child.
Posted 7/1/2015 5:50 PM (GMT 0)
Please do not let folks talk you out of doing your own research for your family. If you want the facts about SCD, I still suggest you do as I said in my last post. Even if you decide not to do SCD it may be helpful or even comforting to speak with other parents in your situation. They can share their thought process which might be helpful.
Also please look into additional healing options like LDN and fecal transplant.
You need to evaluate all healing paths for your family not just the ones your doc says.
I truly hope you look into all the options and find one that works for your son
Posted 7/1/2015 8:41 PM (GMT 0)
dfdavedf, can you share a link showing LDN is "going through the FDA process right now to be sold as a Crohn's treatment?"

Also, when you say SCD has "proven effective" for 10s of thousands of folks, can you share a link to that study? Or are you saying there are tens of thousands of anecdotes? As we all know, anecdotes are not data and anecdotes do not "prove" any treatment to be effective.
Posted 7/1/2015 9:45 PM (GMT 0)
Not looking for an argument or to convert anyone. It is my honest belief that folks like this lady need to educate herself on alternatives to the brutal drugs. I simply provided a starting point and a perspective that docs do not know everything and you have to do your own research.
Posted 7/1/2015 10:04 PM (GMT 0)
BTW the folks doing the phased process have promised that the price will not rise but we will see
Posted 7/1/2015 10:18 PM (GMT 0)

dfdavedf said...
Not looking for an argument or to convert anyone. It is my honest belief that folks like this lady need to educate herself on alternatives to the brutal drugs. I simply provided a starting point and a perspective that docs do not know everything and you have to do your own research.

You give away your obvious biases when you refer to the "brutal drugs." What about the people they have helped so dramatically? Can they call them "magical drugs?"

How is this person supposed to educate herself? By reading medical journals? By reading an old book that has all sorts of hyphotheses that have not been supported by research data? By reading testimonials online? The quality of the sources a person reads when "educating themself" makes all the difference.

From the wiki article on the SCD:

"Retrospective studies, case studies, and numerous self-reports reports suggest that the diet is helpful for some people with IBD.[8][9] Small non-blinded clinical trials are now achieving publication in the scholarly literature.[10][11] More research is necessary, and several clinical trials of SCD and similar diets are in progress. The efficacy of SCD for treating disease has not yet been established scientifically."

So, if you or a loved one is dealing with mild disease and have plenty of time to play around, sure, feel free to experiment (while being monitored by a doctor). But if you present at 8 years old with severe disease, it's unlikely you have that luxury of time. Would you choose a treatment with an enormous amount of research showing it can work, or a treatment that may or may not be more effective than placebo?
Posted 7/1/2015 10:33 PM (GMT 0)
It could easily be said that Crohn's is a "brutal" disease which requires "brutal" drugs. Nobody exactly wants to be on immunesuppressants, but the alternative to that (not being on the "brutal" drugs) can be considerably more painful and dangerous. Not to mention that children with Crohn's only get the chance to grow to their full height until 18 or thereabouts: they cannot make up for stunted growth once they become adults. If you faff about for years with severely restrictive diets, they may not get a chance to thrive and grow. If we are going to count anecdotes as evidence, then anecdotally I have seen many people report that they had to give up the SCD because they were underweight as it was and losing even more weight on the SCD.

As for educating yourself, you hit up Pubmed and you look for abstracts (or free articles) like this one:

Low dose naltrexone for induction of remission in Crohn's disease.
Posted 7/1/2015 10:44 PM (GMT 0)
To those of you that have hijacked the end of this thread - please stop your discussion about various dietary approaches and alternative medications.

If you want to discuss the subject more, please take it to a new thread.

To the momof8yearoldboy - I am sorry that your inquiry turned heated in the end. Feel free to start another thread if you have more to discuss. Also, please keep us updated!
Posted 7/2/2015 3:56 AM (GMT 0)
Please do your own research. Do not listen to me or them, but learn for yourself. There is no single right answer for everyone. If you go to 5 docs you are likely to get 5 different treatment plans. Even if you decide you only want to do drugs, please research the heck out of them so you can make an informed decision. Healing thoughts to you, your family and anyone reading this thread.
Posted 7/2/2015 4:18 AM (GMT 0)
Thanks Ides. I'll definitely keep you guys posted.

Thank you all. I respect each of your opinions. I am not against any diet. As I mentored above, my son loves to eat. He really enjoys the process of cooking and relishing the food. I'm kind of following a diet. I don't know how effective it is.

Regarding the medicines, I'm very new to all these and I am yet to learn about each drug. I decided to meet another doctor to get one more opinion. My concern is, even after a course of steriods, he still bleeds, have urgency issues and complains about tummy ache.

I wanted to know what kind of omega 3 supplements can I give to my kid. I don't see many OTC omega 3 supplements for kids.

Also, has anyone tried vsl3 for their kids? Is it effective?
Posted 7/3/2015 11:33 AM (GMT 0)
I did not find VSL#3 of much relief. Since we eat rice with home made curd, I think curd has enough nice bacteria as VSL#3. I am not sure experimenting with food or alternative medicines will heal Crohn's. In stead of bumping a boy to higher drugs like immuno suppressants, steroids and biologics, I may be going out on a limb, please see if a stay in India will help and please excuse me if I am going above board in my suggestion.

VSL #3 and Omega 3 are just supplements, not a great help in relieving Crohn's.
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