Crohns- 12 year old boy

My 12 year old son was diagnosed with Crohns last week.
The initial symptoms started during spring 2014 after we came back from a vacation. He had strep throat and the doctor prescribed him antibiotic (Amoxycilin if I remember correctly). A month after that we noticed he was getting low grade fevers (99-100.5) during evenings almost every day after returning from school. We had blood work done and the results were mostly normal except some some inflammation indicators. The doctor then said it could be some kind of persistent virus and asked us to wait and watch. My son got little better, got a break from the fevers for a couple of weeks and we also thought it was just some kind of viral infection. But in Septmeber 2015 when the fevers returned, I took him to another pediatrician and on the very first visit he suspected there might some gut related issue based on my son’s weight, occasional stomach pain, mouth ulcers and referred us to a GI along with prescribing a bunch of blood work, stool tests, ordering ultra sound scan etc. The blood test results indicated inflammation, and anemia. Abdominal ultra sound scan results came back normal while Calprotectin in stool was unusually high (800+) in stool test.
We went to pediatric GI in November 2015 who was pretty convinced it could be an IBD and scheduled endoscopy/colonoscopy following month. Meanwhile we started giving my son probiotics (Pro-Kids brand) and milk with turmeric regularly which helped him feel better and stopped the fevers for a couple of weeks. The Calprotectin test number also came down to 300+. Encouraged by the positive results, we postponed the endoscopy and colonoscopy and told the GI we would like to continue what we were doing for a couple of more weeks and get another Calprotectin test done and then decide about the procedures. Everything was going well for a couple of weeks and then on one weekend my son had too much Pizza (he was hungry!!) and played basket ball really hard and the fever was back again that night. This time the fever was as high as 104 and he had to skip the school for a week. The Calprotectin test done from the stool obtained when he had high fever showed 1000+.
With that we decided to move forward with the endoscopy and colonoscopy and got it done last weekend. The doctor noticed patches of small ulcers all around the big intestine, colon and terminal ileum and the biopsy confirmed Crohns disease. The doctor says it is moderate and gave us a couple of options for next steps:
Start him off on only liquid nutrition supplement such as Ensure Plus or Boost for two weeks to bring down the current inflammation and then slowly and incrementally add solid foods to the menu. Then treat with steroids and/or anti inflammatory as necessary.
Put him on meds immediately and bring down the inflammation, then maintain it with meds as necessary.
We liked the first option better since it doesn’t involved medication but we thought drinking Ensure 6-8 times a day is going to be really tough. We asked her about SCD and she said we could try it out for a few weeks. We are currently preparing our kitchen and planning to go on the diet starting next week. We are really hoping that probiotics + vitamins + fermented food (sauerkraut, yogurt, and keffir) and removing sugars and packaged food completely from the diet will help him get better. I am also enquiring about Yoga classes in the area to enroll and thinking of trying some alternate therapies such as Homeopathy while keeping traditional medications as the last option.

I just wanted to welcome you to the forum.

There are many kids on here that have done EEN (exclusive enteral nutrition) either with boost or ensure which are polymeric or more broken down formulas that are either semi-elemental or elemental prescribed by GI. The polymeric formulas are more palatable. It's usually done in place of pred and usually on a schedule of 8 weeks or longer.

There are several kids that are on certain diets along with meds. SCD, IBD-AID, PaLeo etc.

Since CD is usually more aggressive in children the key is not only to get rid of symtoms but to get them in deep, stable remission with mucosal healing. This will lessen the risk of chronic simmering inflammation causing permanent damage that can lead to obstructions and surgeries.

Your son's diagnosis journey sounds almost identical to my son's journey as far as mouth ulcers, night fevers, lack of weight gain.

I think there is one parent here that has a child that has only done EEN then SCD and it been enough to bring about mucosal healing. I'm going to tag optimistic, it may be them though I can't remember off the top of my head.

Also I'll tag my little penguin, maya142, kimmidwife, crohnsinct and jmrogers4.

Good luck in your son's treatment.

Thanks for your reply, Clash.
After the consolation with GI, we gave my son two bottles of Ensure Plus Chocolate (along with the regular food which mainly consisted of rice, yogurt, eggs, butter and vegetables plus probiotics) and he got fever that evening after returning from school. We thought may be the sugar in the drink caused it so we haven't given it to him after that. It was two days ago and we still see an occasional low grade temperature.

It is probably just due to the inflammation he has. There are several studies about EEN and most have found that polymeric works as well as the others. Now the prescription formulas are more broken down and easier for the digestive tract to work with.

The nature of the disease and having active inflammation will cause fevers, fatigue, mouth ulcers etc on its own regardless of other factors.

Big hugs
Crohns waxes and wanes
You won't fix it in two days since it probably has been simmering for months .
EEN ( formula only is as effective as steroids in reducing the inflammation .
Using the in combo with meds or scd etc is probably better than one methods alone

This is a marathon not a race
Ds drank 8-9 peptamen jr ( semi elemental ) formula for 8/9 weeks at dx .( he was 7) and like you I wanted to avoid meds
He was placed on 6-mp at the same time .
His numbers went down in bloodwork but all symptoms came back including vomiting once food was added and so we started pred with 6-mp
It took a year before Ds was placed on remicade
And a year before I could say he was good everyday for weeks on end
Two years before I became comfortable with crohns
It's a very very long process .

Just don't hold on to one treatment too long and don't be afraid to try new things if needed .
Ds is currently on humira and mtx
His diet is limited due to Gastroparesis ( too much inflammation for too long left to simmer in his duodenum-resulted in a stomach that doesn't move the way it should now )
So while the meds are scary
Having unresolved inflammation can cause things more permanent than anyone would imagine

Hi there and welcome, although I am sorry you have to be here!

Both of my daughters used EEN to induce remission. When EEN is used to induce remission it is usually a 6-8 week initial period. I have not heard of a two week induction period with a reintro of food so soon.

Also, most people use EEN to avoid steroids so it doesn't really make sense to me that the doc would use steroids after you reach remission with EEN. If you are going to move to a maintenance med after you achieve remission, steroids are not a maintenance med because of the risks and nasty side effects.

Usually, once food is reintroduced, inflammation returns unless a maintenance med is used. I have only heard of one person who has been successful at achieving and staying in remission with EEN and diet alone and that is optimistic. Her son's remission is based not only on symptoms but also clinical markers and endoscopy with biopsy. I am sure she will be a long shortly.

Both of my daughters have excellent success with EEN. It brings both of them right to remission. The problem for us is staying there. We have tried the IBD-Aid diet with my younger daughter and not had success and she is also on Methotrexate.

One other comment about the logistics of EEN. If you do try diet and it doesn't work and then move to a maintenance med, most take a while to get to therapeutic levels. While you are waiting for the med to get to therapeutic levels you will need a plan to attack the acute inflammation and that is usually steroids or EEN...just so you are prepared that you might be facing the same decision again down the road.

My girls chose to drink Ensure and Boost. 8-10 a day. It wasn't really that bad. There is also a naso gastric tube option. Some kid prefer to drip their formula overnight and then drink a few during the day so there isn't so much pressure to try o get all the shakes in. Whatever you decide you can always switch. It is a very flexible therapy and nothing is set in stone. Even if he decides to try it and after a week decides it isn't for him...no harm done...he tried. But I do encourage him to at least try.

I am sorry about the fever but it is likely due to disease activity and not the formula.

Good luck and do keep us posted.

Hi there. I hate that you had to join us here, but it is a very supportive and knowledgeable group.

My son is the one who is using scd. I really can't say what put him in remission. He started steroids in the hospital and he improved within 24 hours (had been in hospital for a week, tube fed, lost 25 pounds). He was shooting baskets a few days after not being able to stand. Sadly steroids can't be used long term so we needed to move to next step, which was going to be Meds. Even though I have a professional connection to pharma,I felt the angst about giving drugs to my child. I read all the articles on the internet calling them poison, etc. But I saw how sick he had been and wasn't ready to risk going back there. No way.

He tried to wean off steroids but symptoms crept back. The dr recommended 80% formula and 20% food to help the wean, and bc he had told me separately he was doing studies on scd, I decided to make the food all scd. I can't tell you drinking all that was easy. We did a lot of bribing and threatening (not my finest parenting moments) but it was worth all the drama. Symptoms faded after a few weeks, and after about 6 weeks he started to add more food, all scd. He also took Prilosec this whole time.

A year and a half later he still hasn't made it to Meds other than the Prilosec. He is about 70% militant scd and 30% formulas. There are days where he drinks 8. He is doing well, knock on wood, and we are staying the course for now. He is closely monitored with labs and scopes bc this disease can slip back in. I do know the formulas are full of scd illegal things. We don't know why it works but it does.

Scd is not easy. It takes a lot of effort for you to shop and cook. It is hard to eat away from home which is difficult when you are a teenager. We are dealing with some issues with that now. I'm happy to chat or answer questions.

I hope things turn better for him soon.

Thank you Optimistic, crohnsinct, my_little_penguin, and Clash. I am so glad I joined this forum. Very thankful to the guidance and support I am receiving here. I am going to discuss the EEN option with my doctor again- it is possible I did not get the details correctly.
@Optimistic,
Does your son still use Steroids as needed while on SCD?

Thanks again.

No steroids since his original course, which was several

Welcome sorry I'm late responding, didn't see the tag until today. I try and check in regularly but my son is doing really well and so Crohn's does not consume so much or our lives however this forum has been such a tremendous help and I dearly love the parents on here that I try and keep involved and help where I can.
My son has been on EN twice once to supplement and once in place of steriods to reduce inflammation. He was unable to do Boost/Ensure, they caused stomach pain and just hard for him to digest at the time. We did a semi-elemental (Pediasure Peptide) and he drank 8-9 a day and it was difficult as it was about 1 every 2 hours so between sports, school and life in general it was a difficult road and once food was added back inflammation came back.
We had a lot of issues with growth, development and weight gain and it was not until we had achieved deep mucosal healing that my son was able to absorb the nutrients and calories his body need to do what it's supposed to.
I do know of several kids my son goes to camp with who follow the scd diet and have done well for the last couple of years. We tried it and for us it just didn't work unfortunately but the goal is to get your child well and if the "lesser" treatments don't work just be prepared to jump as MLP said the faster you can get rid of the inflammation the less damage is done.
Good luck and keep us posted