4 year old - Very Interesting case of Crohns Colitis

[savinir]

Hi,

My Son 4 year old was diagnosed with Severe case of Crohns Colitis in July 2021. There was lot of blood in the stool. Colonoscopy revealed Crohns and colitis.
Doctor gave predizone and sulphasalazine. I wanted to control it with food and used probiotics,Non fiber food etc. After a month we stopped sulfasalazine and he seemd to be doing fine. But after 3 months we saw blood again. Told doctor what we did. Doctor was from the begining telling us to go with infliximab as thats the proven medicine.
Later we started using Ayurvedic medicine for 3 months but we still saw blood with out the use of sulfasalazine. Most recently we saw blood in APril 24,2022. Calprotectin was 265. From May 2022 we started using sulfasalazine, Ayurvedic medicine and also other supplements like Colostrum, L-glutamin & collagen. Earlier we were only using collogen.

On june 14 we did an MRI and to our surprize it showed NO Inflamation. Doctor said MRI might not have picked correctly as he was very young so ordered Calprotectin test and Fecal Occult blood test. Calprotectin was only 17 and Fecal Occult blood was negative.

Our dilemma is was it sulfasalazine that showed this improvement or is it the suppliments like L-glutamin & colostrum. I want to eventually get rid of sulfasalazine but i am scared if inflamation would come back. Any thoughts on this would be appreciated.

 

[Scipio]

That's the problem with adding multiple medicines all at once. If one of them works you don't know which one (or combination) provided the benefit. It's what scientists call an uncontrolled experiment and is difficult and perhaps impossible to interpret.

Another possibility is that none of these medications helped much and your son is simply enjoying a spontaneous lull in his disease before the next flare. Crohn's is an episodic disease that can come and go over time. But the problem is that it very seldom stays gone. It almost always comes back eventually and comes back worse. Which why it is important to get your son into remission and identify the right maintenance medication to keep him there.

In general, very early onset (VEO) Crohn's, like your son's, is uncommon and hence less is known about it and how best to treat it. but it is known to often be aggressive and thus in need of aggressive treatment to keep it in remission as much as possible. VEO patients face the prospect of longer years of disease than most Crohn's patients, which means greater risk of cumulative damage to the gut and eventual surgery.

If possible I suggest you find a doc who specializes in pediatric Crohn's and work very closely with him/her to find a suitable path forward. And that may well involve bringing out the therapeutic big guns (i.e biologics such as infliximab) to get and keep that disease under control. Taking a light touch with diet and supplements, and herbs may be fine for some light cases of Crohn's, but serious diseases usually require serious medicine.

 

[savinir]

Thank you for your inputs. But what makes me puzzed is how does it not show any inflamation in MRI. My son was put to sedation for almost 3 hrs and they took extensive pictures. If some one with crohns is in remission does it show as NO Inflamation in MRI ? is this normal.

 

[Maya142]

Hi and welcome!
There is a Parents Forum where you may get more responses: https://crohnsforum.com/forums/Parents-of-Kids-with-IBD/
I would encourage you to post there, though I will tag some parents - @my little penguin, @crohnsinct @Pilgrim @Jbungie
Typically kids with Very Early Onset IBD (VEO IBD) tend to have aggressive disease. Most do require treatment with biologics like Infliximab or Adalimumab. I would really encourage you not to give up on biologics, because they are the one of the only treatments that are proven to reduce complications like abscesses, strictures, fistulae and disease progression (more ulceration or bleeding) in general. Over time, long-term inflammation can cause damage that is irreversible and so that is why doctors tend to want to treat aggressively from the start.

In terms of the MRI, you said your son was sedated. That makes me think he had an MRI without oral contrast. You really need an MRE - MR Enterography to see a detailed picture of the small bowel. For an MRE, the child must be awake because they have to drink oral contrast and are given IV contrast in addition. If your son didn't drink oral contrast, then it's possible that the MRI just wasn't very detailed or accurate. Did you have the procedure done at a Children's Hospital? Adult facilities are typically unused to very young children and may not read the scan accurately.
However, the low Fecal Calprotectin and negative Fecal Occult Blood test do suggest that something is controlling the inflammation. I would guess that's Sulfasalazine, since when you stopped it in the past, he started bleeding again.

I would also suggest seeing a pediatric GI who has experience with VEO IBD. Ayurvedic treatments and supplements simply have not been shown to control inflammation, and you really want to find a medication that will get him into remission. Crohn's can be debilitating if inflammation is left unchecked - in the past, the majority of kids with IBD would require surgery within 5 years of the diagnosis.

 

[Maya142]

If some one with crohns is in remission does it show as NO Inflamation in MRI ? is this normal.

Yes, if a child is truly in remission, then no inflammation would be present. But to get a good sense of whether there is inflammation in the colon, a colonoscopy is really a better test.

 

[my little penguin]

Given your child’s age it makes sense that they sedated him for the mri
Most pediatric hospitals will not do an mri without sedation for kids under age 7
That said the only way to see inflammation on an mri is with entography (MRE ) which must be done awake

My kiddo was dx with crohns at age 7 but was sick from birth on .
Very early onset crohns is an entirely different beast than regular crohns
Children’s hospital of Philadelphia has a veo ibd clinic
I think Stanford has one as well

While diet is great and I understand as a mom you don’t want your little child to take scary medicine with potential (stress potential) side effects

I can say a mom who was in your shoes
We tried many different diets before he was dx
And shortly after he was dx
Finally gave Ds biologics (remicade ) at age 8 -one year after dx
I cried for what seemed like forever
Thought it was Horrible
The biologics worked
My kiddo played and grew
Went to school etc
And now is an adult who still takes biologics

Definitely get a second opinion at a veo ibd clinic if possible
Talk through your concerns for meds with your child’s Gi
Talk through what options there are that are medically proven for little kids

Look at een (exclusive enteral nutrition-formula only - no solid food )
That is very hard for a little kid but works as effectively as steriods without medical side effects
However once food is introduced it stops working

Looking into genetic testing
The veo ibd clinic at chop has a immunologist ,genetics ,Gi and nutritionist
Since a lot of very young crohns kids actually have some others things than crohns going on that mimic that

Testing is key

Some just have veo ibd

Treatments that are effective are hard to come by in little kids
So please get another opinion
Since what works for some toddlers/preschool kiddos
Does not work for others

Hugs

 

[savinir]

First of all thank you all for taking time to give a detailed reply. Its been very rough on our part for the past 1 year trying to find answers . Glad that there is a forum here to discuss.

My son was diagnozied at a children hospital. Below is are the test results. I hid the name etc of my son and the doctor. Pls tell me if this is the test you are referring to or is it another test that needs to be done. Btw,They gave my son something to drink before giving sedation. It was a color liquid but very small quantity. May be like 2 tablespoons kind of .

will start posting in the other tread after your responses.

 

[savinir]

Following things were used during his MRI

 

[my little penguin]

Looks like he had an mri with entography

For entography they have to drink a ton
Similar to this
https://beekley.com/breeza-flavored-beverages/breeza-for-neutral-abdominal-imagingMy kiddo at age 8 had to drink 3 bottles

The breeza make the tissue “glow” or show up better so they can see any areas of thickening in the intestine -typically the terminal illeum area

2-3 months before dx
My kiddo had a small bowel follow through
Basically he had to drink a similar drink to breeza but not as fancy with red kool aid packet in it (many cups ) and keep getting X-rays to watch it go through his intestine
The radiologist told us his gut was slow (they took maximum amount of X-rays in a day -15)
But the one thing the radiologist knew for sure was he didn’t have crohns

Yeah they got that wrong

My point is no test is perfect
So a combo of tests are needed
Including -colonoscopy/upper endoscopy-they can place a capsule Endoscopy during the upper endoscopy to view all of the small intestine and imaging (MRE )

Just weird he didn’t drink the barium part of the liquid
Very strange

 

[my little penguin]

One thing the report notes is
Ulcerative colitis
Ulcerative colitis is treated differently than crohns
Sulfanazine works well for ulcerative colitis

Second ulcerative colitis is only found in the large intestine or colon
So an MRE would not see anything
Only a colonoscopy could tell if there is really inflammation in the large colon /rectum

Given his age
You can have a records review done for a second opinion at Childrens hospital of Philadelphia even without going there in person
At the veo ibd clinic

 

[Pangolin]

The low calprotectin is great, but the MRI does indicate some small bowel thickening and some "reactive" lymph nodes. That likely means there's still some immune response going on, so I wouldn't say the Crohn's is totally in remission. It sounds like things are going in the right direction, but I can't say what's been working for you.

 

[Maya142]

If he has Ulcerative Colitis, then Sulfasalazine may control things. But if he truly does have some small bowel involvement and it's Crohn's, then you'll likely need biologics (like Infliximab or Adalimumab) or immunomodulators (Methotrexate).
I haven't ever heard of an MRE without the oral contrast, but I suppose since he is so young and needed anesthesia, they skipped it. The two tablespoons of liquid they gave him prior to sedation is probably oral Midazolam or Versed, based on the MRE report. They give that to kids to help them relax before they give them sedation.
But to see whether his colon has truly healed, you really need to do a colonoscopy.
I think a second opinion does make sense here, or a record review at one of the top pediatric IBD hospitals - CHOP in Philadelphia or Boston Children's or Cincinnati Children's.

 

[savinir]

Initially after colonoscopy doctors said he has crohns colitis. But now after MRI that we took in June the doctor "thinks" it might be just UC. Doctor has suggested colonoscopy again if the results of Calprotectin and Occult blood come bad. But surprisingly they came very good. We are yet to meet doctor again for our next appointment and she may say lets repeat these poop tests. She was suggesting for colonoscopy again but i was hesistanct ans this would be his third time in 10 months. Also i dont understand the purpose of colonoscpy when we can see blood(if any inflamation) which confirms UC instead of again making him drink all those liquids and go theough this procedure again. I am thinking to repeat these poop tests every month and in next 6 months if we see no blood will opt for colonoscopy. Any thoughts appreciated. i will check out CHOP to get a second opinion.

 

[my little penguin]

Talk to chop -see what they recommend
Very early onset ibd clinic
https://www.chop.edu/centers-programs/very-early-onset-inflammatory-bowel-disease-veo-ibd-program
Stool (fecal cal) and occult blood cards are a tool but not as informative at a colonoscopy especially for ulcerative colitis