Is this Crohns?

[thogmarta]

My 6 year old son has been having digestive issues for a while now. I took him to the Dr. who ran 4 stool tests, 2 of the 4 tests were taken while he had symptoms - both of which indicated increasing higher levels (100 and 1071) which reflected the severity of his symptoms. 3rd test was taken while there were no symptoms and was 38. However, due to the highest number we were referred to a pediatric gastroenterologist. Without much dialogue, or looking at his normal level, or really delving into his history she suggested a dual procedure of endoscopy and colonoscopy and stressed that we get it asap. For a number of reason, including her poor bedside manner, I'm getting a second opinion.
In the meantime, I eliminated dairy from his diet. After 2 months dairy and symptom free I gave him a full dairy day. He was fine that evening, but 24 hours he had pain & diarrhea. 24 hours after that he got a fever with diarrhea and body aches. The diarrhea has continued, but today, day 5 after consuming diary he has begun throwing up. I know that the Dr.'s are concerned, looking at his calprotectin levels, that he may have one of the IBD ailments. I am unsure, and the specialist was so challenging to talk to that I walked away with more questions than not. I realize that the endoscopy and colonoscopy are perhaps the fastest way to a diagnosis (?) but I don't know and my primary care physician is not familiar with this either. I certainly don't want my son to have to go through the procedures if they are not a) conclusive and b) 100% necessary - but how do I know?
Can dairy cause such a violent, long lasting effect?
Does this sound like Crohns/Colitis?
What is the normal calprotectin levels of Crohns/Colitis patient?
What can I give him to reduce the stomach pain?
What are they looking for in the biopsy during endoscopy & colonoscopy? And, is this factor there when there are no symptoms?

 

[DJW]

Hi and welcome.
I'm sorry you son is going through this. Its so difficult.

I can't answer all your questions but try to help.

The biopsy: basically scopes with biopseys are the best way to diagnose IBD.
It is very important to know symptom free does not mean disease free.

Sending you both my support.

 

[MamaHenn]

I think he should probably have further testing to find out what is going on. I also think that if you are not comfortable with the GI, you should look for another one. If it is IBD or any other condition that will require care by a GI, chances are you'll be there frequently and I personally think you should feel comfortable with the dr. Good luck and keep us posted.

 

[Mr chicken]

Tagging Dusty and crohnsinct

Untreated crohns can go from bad to deadly quickly.
No one knows if your kiddo has crohns
But scopes and imaging are the gold standard for determining if he does.
Waiting is really not an option.
DS was dx at age 7 so I understand not wanting to put him through a scope
But honestly it's harder on the parent than the kid at that age .
Knowing is key since treatment is life long but once under control ( takes most a while to figure out the best combo of meds) life can be close to normal .

Crohns can cause children to lose weight stop growing have malnutrition brittle bones ,arthritis , strictures, fistulas, abscesses , anemia , inflammation in the eyes ( uvetis ) skin rashes etc...,

Most have to fight a long time to get a GI to even consider Crohn's disease as a dx in little kids and fight longer to get a scope .
We love our GI but have still gotten second opinions.

Hopefully you will get a second opinion quickly

 

[crohnsinct]

Thanks for the tag Chicken.

Hi and first let me say I am sorry you are having to travel down this road. An elevated FC is a definite indication that something is not right. It is not conclusive of IBD though. There are a few other things it could be but it most certainly points to organic causes rather than functional (IBS). The only time you might have an elevated FC without an organic cause is from the use of NSAID's but from all I have read the use really has to be chronic and at high levels.

It is possible for FC to wax and wane just like disease activity but even just one result in the 1000 range would certainly move any GI to scopes.

When my younger daughter was being evaluated I read a lot about FC trying desperately to find a reason other than IBD for her values. One of the things that came up was a milk protein allergy. It isn't the most common reason for elevated FC, but it could happen. I will see if I could find some of those papers for you.

However, either way you really want to have those scopes and biopsies to absolutely rule in or out IBD. You don't want to delay the dx. If it is IBD, you want to control the dx and not let the disease control it to thepoint where you are left with few options.

Chicken tagged me because we had no clue my older daughter had Crohn's. They figure she had it for two years prior to dx. She was for the most part asymptomatic. She had some slight symptoms (fatigue, lack of growth etc) but nothing that set off any alarms. So the disease was silently doing it's damage until her first big flare. Diarrhea and bleeding for two weeks. She was admitted to the hospital and put in I.C.U. fighting for her life.

So having seen how silent and sneaky this disease could be I absolutely would move to scopes to get an accurate picture of what is actually going on. You need answers so you can treat what it is and get your pumpkin feeling better.

Good Luck!

 

[Farmwife]

Lol, you guys tagged in either! :ylol: which is best best I would have tagged in you both any ways.:thumleft:

Hi and welcome.
I also have a 6 year old.
She has/had multiple food allergies or sensitivities. It took a while to get her a proper dx because we all thought food allergies were the cause. Sadly that wasn't the case.
I hope you get answers and your child starts feeling better soon.

 

[CrohnsKidMom]

Welcome to the forum, but sorry your son is sick. My son was dx'd 2 yrs ago at age 8. You are in the middle of a very difficult time, but things will get better. There are lots of knowledgeable people on here who have been a great help to me.

My son achieved remission, but is currently having some issues. The GI nurse told me they like the FC level to be below 50. Once it reaches 150, they carefully monitor it, if it continues to creep up they start doing some investigations, like MRE, to see what's going on inside. My son's level is currently at 539. The nurse said they would consider someone in a full blown flare with a level of 1000.

The scopes will enable the Dr to see what's going on inside (although not much of the small intestine can be accessed this way) and the biopsies they take will confirm an IBD diagnosis. I believe the biopsies will show if there has been damage from IBD, even if the patient is currently asymptomatic.

I know when my son was dx'd he couldn't tolerate any dairy. He does not have an allergy or intolerance, but the lactose was hard on his already inflamed system.

I wouldn't change too much of your son's diet until investigations have been completed, but a low residue diet may give a little relief, ie. Low fiber, soft cooked veggies, peeled fruit, no seeds/nuts. Smaller meals, lower sugar, and whole foods, may also help. And if the dairy continues to bother him, I would avoid that. Keeping a food diary is a good idea. It may give some hints as to what foods are bothering him.

I hope you find some answers for your son, and he starts feeling better soon. Keep us posted on how he's feeling. Take care!

 

[Lindseyw4]

Really sorry your little one isn't feeling so well. It is hard to tell if your son has Crohn's. My son's symptoms were vague like yours. I'm not sure where the numbers you're referring to are coming from, but Crohn's diagnosis consists of these things (i believe, usually):

Stool Study--rule out infection, fecal calprotectin
metabolic panel
colonoscopy/endoscopy
physical exam

my son was dx last year at the age of 9. I took him for the scope after he got a metabolic panel that showed his inflammatory markers to be very high, along with him having lost a lot of weight, and them telling me he may have Crohn's.

good luck to you and your son! hope he does not have it.

 

[Pilgrim]

It is my opinion that going to scopes can give you a definitive answer. Not going to scopes you could go through month after month of this and end up there anyway. I would be concerned about the elevated calprotectin.

My daughter does not have a dairy allergy, however she cannot tolerate milk now that she has Crohn's disease. So, while your son may have a milk issue it may well be tied into a bigger problem.

I hope it's not IBD, but I think you will be grateful to find out one way or the other. If you do the scope for him, just remember that the kids seem to handle it fine. Mine actually didn't realize or believe she had been through the procedure after we went home. Resilient.

 

[crohnsinct]

Here's that paper I was talking about.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881398/