Teen with Calprotectin level 525

[zuzana]

Hi all- I'm new to this, as a parent, at least. My father has Crohn's, and there is a considerable family history of Colitis, IBS and some Celiac. My 15 yr old son has suffered anal fissures, with blood. He's had life-long diarrhea-like bm, and commonly suffers gas & bloating. Avoids dairy.

After the blood in the stool, his pediatrician ordered blood tests, which have led us to a pediatric GI, which has now brought us to a stool test result of a Calprotectin level of 525. He'll be getting the Endoscopy & Colonoscopy with biopsy in a few weeks. We've improved his diet recently, and [my father's advice] he's been drinking aloe vera juice. He's feeling quite well these days. The fissure is nearly gone, and no bleeding.

I guess I just want to know what to expect if he gets a diagnosis of Crohn's,which we're kind of expecting. In the documentation I've read, calprotectin at 525 is an active IBD, however, I've read about people with levels in the thousands! What does that mean? What meds/treatments do doctor's generally start with? What should I know?

 

[Tesscorm]

Welcome to the forum but I am sorry that you had to find us because your son's not well

My son has never had this test so I'm not very familiar with levels associated with inflammation.

Hopefully, the scopes will give you some answers, however, scopes can reach only a small distance into the small bowel - other imaging tests need to be done for the small bowel. MREs are very common, also capsule endoscopy (pillcam) - a tiny camera you swallow and will pass through your GI system. If there is any concern of narrowing in the small intestine, it's a good idea to have a 'dummy' pillcam first which will dissolve if it does get stuck.

There are quite a few meds that the GI may consider and some may relate to the location of any inflammation. Steroids are often used to reduce inflammation quickly but they are not a long term maintenance treatment. Enteral nutrition (formula only diet for a number of weeks) has comparable success rates as steroids at inducing remission but with no side effects - again, not a permanent treatment though.

5-ASAs are a mild maintenance medication but are often not strong enough to maintain remission. Immunosuppressants (6mp, azathioprine, methotrexate) and biologics (remicade, humira, cimzia) are usually used as maintenance meds.

Some GIs choose to work their way UP the medications, some prefer the top down approach and start with the strongest meds to eliminate the inflammation quickly.

Please also have a look through the treatment subforum - lots of info on all these treatments.

:ghug:

 

[Tesscorm]

Forgot to mention... LDN (low dose naltrexone). While most GIs don't feel comfortable with LDN as there are few studes, there are few side effects and there are a number of members who hv had good response.

 

[zuzana]

Thanks so much for your response. I'll write all that down -- better start a dedicated notebook on this.

We tend to be natural healing sorts -- into macrobiotics, we pay close attention to the way food make us feel. My Dad put himself into Crohn's remission 25 yrs ago by drinking aloe vera juice daily -- no further decay of his gut once he started drinking it. If he goes a week or 2 without drinking it, he can visually observe white spots forming on his exposed stoma (has a colostomy). The idea of my son being dependent on steroids and other pharmaceuticals is really anathema to me. I'll be especially interested in hearing about any natural or diet-based ways people have improved symptoms. However, maybe I'm fooling myself?

 

[Tesscorm]

I agree the meds are very difficult to accept. There are a number of members who have tried diet to control their crohns - Amy2 is currently trying SCD with her son. There's also a subforum on diets with lots of info.

My son is too picky an eater to realistically consider drastically changing his diet so it's not something I've ever considered. My 'uneducated' and 'inexperienced' opinion is that diet can control symptoms, however, I'm not sure that I believe diet can control crohns nor induce remission. However, there are many who have probably had success and will disagree with me. As I said, it's not something I have tried!

My son has not had a flare since he was diagnosed two years ago (May 2011). He was given flagyl through IV when he was inpatient for a week and then did six weeks of exclusive (formula only, NO food) enteral nutrition (EN) overnight through NG tube. After the six weeks, we reintroduced a regular diet but he continued with maintenance EN (1/2 dose) until now. MREs done every six months continued to show inflammation in his TI (although no outward symptoms). While the EN seemed to keep the crohns under control, it was not enough to eliminate the inflammation. In January, after another MRE and scopes, his GI decided to add remicade. Stephen is now reducing the amount of EN and will be done with it by July (although I hope he will continue to drink one or two Boost shakes daily for nutrition - he will be leaving for uni in September so it will be out of my hands :lol.

I am grateful he had almost two years without meds!! And I don't THINK the continuing inflammation caused any damage (but, not completely sure - last MRE, before remicade, did show some narrowing but not sure if it was inflammation or scarring).

I certainly encourage you to look into EN and also LDN!! I wish I had pushed harder for LDN earlier... by January, GI wasn't willing to 'try' something and my son was worried about the risks of ongoing inflammation and didn't want to 'try' either (and, at 18 years old, I wasn't comfortable pushing him to go against his own and his GI's opinion).

I do believe nutrition (ie vitamins, minerals) are IMPORTANT! This was not a concern while he has been on EN but I will be strongly encouraging him to continue with nutritional shakes plus a multi-vitamin. I also plan on being more diligent about having vitamin levels tested now. Currently, on top of his EN, his supplements are krill oil, vit D and calcium.

 

[David]

Welcome to the community. I'm sorry to hear about your child and hope it's not Crohn's disease

Your dad has been drinking aloe vera juice for 25 years? Was he juicing his own as I wasn't aware of it being commercially available that long.

As always, I strongly suggest most people, but especially those with Crohn's disease avoid aloe vera juice.

A 2-year National Toxicology Program (NTP) study on oral consumption of non-decolorized whole leaf extract of aloe vera found clear evidence of carcinogenic activity in male and female rats, based on tumors of the large intestine. According to the NTP, from what is known right now there is nothing that would lead them to believe that these findings are not relevant to humans. However, more information, including how individuals use different types of aloe vera products, is needed to determine the potential risks to humans.

Abdominal cramps and diarrhea have been reported with oral use of aloe vera.

Diarrhea, caused by the laxative effect of oral aloe vera, can decrease the absorption of many drugs

Source.

While I personally think the shotgun approach (traditional medications, supplementation, alternative medications, lifestyle changes, etc) is the best way to tackle Crohn's, I understand the desire for some to utilize a holistic approach. But based upon everything I've read and the countless absolutely evil people out there marketing aloe vera juice and supplements in highly nefarious ways, I feel it needs to be avoided like the plague. Not only for the known side effects of Aloe vera and its' unproven efficacy, but considering the nefarious way it is often being marketed, I also question the purity of some of the products.

 

[ChampsMom]

Hello Zuzana,

Welcome to the forum, glad you found it - lots of good information, experience and networking available. Parents who have been there, done that, have the t-shirt to prove it.

I can completely understand your desire to take a alternative approach. I believe (and based on my brief experience with Crohn's - 3 years now), it will all depend on what the tests show. There are multiple families who are regularly on the forum and many more that drop in and out and very few (if any) cases are exactly the same - lots of similarities, but few/no duplications.

Our experience includes: NO IBD in our genetic pool (to our knowledge) - but an extremely stressful 2 years prior to diagnoses. In comparison to many here our diagnoses came fast. We had a short period on prednisone and started on a low dose (1500 mgs/day) of Pentasa (5ASA) immediately. After one year we upped the dose to 3500 mgs/day and touch wood life is good. It is a low level drug and I'm praying he stays on it.

I hope you get answers soon and are able to work out a plan that will have your son feeling great again.

Good luck!

 

[Johnnysmom]

Welcome to the forum!

My son had a Fecal Cal of 586 (this was his highest) while he was on medication and doing well. His fecal cal is now 64 and he is completely asymptomatic, gaining weight, growing and no symptoms.

When my son's fecal cal was in the 500's he felt normal, no D, but he was having a hard time gaining weight. For him, I think it signified a low level of inflammation. The Dr. (and I) were uncomfortable having that level of inflammation going on long term. For kids with IBD they like to see a number under 300 or they consider changing meds or getting on them if you aren't already. You can get a high result from taking NSAID's like Advil right before the test or having a stomach virus etc.

Once we got a reading in the 500's my son's GI wanted to repeat the Fecal cal in 3 months. Obviously we knew at that time he had crohn's and he was on medication. Numbers in the thousands are generally people who are flaring and they would most likely have a lot of symptoms but that isn't necessarily so. The disease has basic guidelines but you will find that each person is somewhat unique.

Sounds like your GI is on top of things. Many GI's don't even use a Fecal Cal, so it's great you have access to that test.

 

[Maree.]

Will chime in here and mention that my 10 year old had a Fecal Calp of 694 back in October. His main symptoms are stomach pain, failure to gain weight and reflux.

So far he's had a barium follow through x-ray, a colonoscopy and an endoscopy which have not shown anything significant. We've still not got to the point where doctors are willingto do an MRI. So it is possible to have Cal proc results at this level and not find quick answers.

 

[Mehita]

My son's last fecal calprotectin test was during a flare up (bad diarrhea, fever, nausea, stomach aches, low energy, poor appetite) and it came back at 1332. For a non-IBD person the normal range is up to 150. I think most GI's are happy if they can keep their IBD kids below 300-350.

DS was on Pentasa, on the bottom of the med pyramid, at the time and it obviously wasn't strong enough to control his Crohn's. SED rate and CRP were both very high (for him) and then scopes confirmed the flare up. He was started on prednisone, the short term med to get things under control, and started Azathioprine (immune suppressor) at the same time as his new maintenance medication. Now we sit and wait to see if the Aza will work for him. If it doesn't, then we move on.

There always seems to be lots of waiting with Crohn's. Waiting for the nurse to call back, waiting for a med to work, Waiting for test results, and, unfortunately, waiting for the next flare.

I will add, too, that while your father also has IBD, the world of pediatrics can be very different. I mean no disrespect to your father, but Crohn's is so diverse. What works for your father may not be optimal for your pediatric child.

Good luck with the scopes! Let us know how things go...

 

[Maudddy]

Does somebody know how "fast" facal calprotectin increases? is it like linear or something? I mean if you got one inflammation goes it fast to a 1000 or something?

I have had this test 3 times, the two first time's I had a count above 1800 (and it doesn't count higher than that) and my last time was 985.

 

[helena101]

When I tried to stop my medication (with doctor's supervision) my faecal Calprotectin was reasonably steady for 2-3 weeks and then shot up from 100 to >1800 in a week. So it can go up pretty fast. It stayed at >1800 for about 3 weeks even though I restarted medication, and then suddenly dropped to 143 the following week. I was doing weekly tests during this period, and I never had any mid-range numbers, I just suddenly shot up, and dropped down.

 

[helena101]

Zuzana, I tried to heal my crohn's through diet (it didn't work 100%, I need to take some mild medication, but much milder than originally prescribed). Look up Professor John Hunter (a GI based in Cambridge UK) he has formulated a diet-based treatment plan. He has a book published about it which gives a lot of info, and Happy on the forum has had real success on his diet, as compared with my only partial success.

 

[zuzana]

Thanks for the replies. Comment for David, forum co-founder - I can recall my dad drinking aloe vera juice when I was a teen in the 80s. He had a big 2 gal jug, similar to what you can get now at Trader Joe's. I'm thinking that he bought it at a local health food store. At the time he had 2 open stoma holes, each emitting a lot of mucus daily, both swollen and sensitive. Within a short period of drinking A.V. juice, his stomas cleared up - no more mucus, very little inflammation. He later had a second surgery to correct the rather botched job he'd had for his first (not a GI, but a general surgeon, thinking he was doing an appendectomy). I recall that after than point he got much better. He'll tell anyone that it's due to the A.V. juice -- he's not really such a careful eater otherwise, so I'm sure he can't attribute it to good diet. However, I'm not sure what meds he's on now (and in the past 25 yrs).

ANYWAY, my son HAS indeed been diagnosed with Crohn's this past week. He has "moderate to severe" ulceration in his small bowel. Thankfully, he's having no symptoms, other than diarrhea, which is typical for him. He's starting on Methatraxate today, and probably Humira in a week or two. We've requested Humira over Remicade, since our son goes to boarding school and it will be tricky to get him home for infusions in a timely fashion. He's pretty mature, so he could handle the self-injections, we feel. He's 15 and essentially adult-sized, so the doctor thinks that he can dose him properly on Humira.

 

[ChampsMom]

Glad to hear you finally have some answers. I hope the meds will do what is needed to bring your son into remission - though diarrhea is typical for your son - it shouldn't be happening. I can't imagine how it is effecting him on a daily basis when he's away from home.

I'm sure you're probably already working with the school's nurse/staff regarding his medical needs and possible diet changes? Are you looking at putting a 504 plan in place for him? Though he may not need anything right now it might be nice to have in place just in case. They have a great template on the CCFA website.

Having a teenager with Crohn's can be difficult on them (my son has managed quite well, but has tons of people to talk to about his illness or anything else he needs) - sounds like your son is an old soul - so I pray he's able to work with really great people.

Take care...

 

[zuzana]

Thanks for the advice. We were just starting to think about how we would deal with the plan for school. I'll take a look at the template you mentioned. He truly IS an old soul -- how did you see that?

 

[my little penguin]

Be prepared humira shots are very painful.
Most compare it to a wasp sting you have to hold in place for 10 seconds .
My 9 year old is on an adult dose of humira .
The needle doesn't bother him in the least . The humira itself does burn /sting like no other medicine .

Good luck

 

[ChampsMom]

He truly IS an old soul -- how did you see that?

Just had a feeling based on how you spoke of him...

There is a 504 thread here somewhere - with lots of ideas. I started with the CCFA template and edited it to meet my son's needs. I erred on the side of caution (better be prepared for the opportunity and not have it happen, than have it happen and not be prepared).

One of the things that the nutritionist and GI told me was that my son needed to eat multiple "meals" a day - that his body wasn't set up to eat 3 meals a day - it simply couldn't handle the large masses of food at one time. So in his 504 plan it has that he will carry food/drink to all of his classes and can eat in class when needed. He was also situated near the door and could leave at any time (no permission or notification to the teacher needed). We also set up extended time for make up work for when he missed school (which was frequent) as the schools 2 day policy was not enough time (he is in all advance courses and falling behind was stressful hence a trigger to feeling worse).

There are many things you can do to ensure he gets the support he needs (whether it is a private school or public).

Lots of great resources on the forum, I'm happy to answer any questions!

 

[Dexky]

Hi Zuzana, sorry I've missed this til now. Do they intend to keep him on mtx and Humira concurrently? Where is he being treated? It sounds as though you have a very aggressive GI. MTX and Humira is a common combo but usually after much trial and error with other meds.

 

[zuzana]

To Dexky- Yes, in fact, MTX and Humira is the plan. I'm not sure if he plans to keep him on MTX for a long period or not. I'll be sure to ask.