High calprotectin

[Michellelh]

Hello - I am so happy to have found this group. I’m going through the articles in the sticky now.

My daughter has suffered from reflux since birth. She’s been seeing a pediatric GI Dr for the last 6 years. She’ll be 17 in 6 weeks. Two years ago her stomach pain and cramping started getting worse and worse. She had an EGD in December. Because my daughter has dealt with long term chronic stomach pain, she’s very nervous about medical procedures. As she was given the propofol to put her to sleep, she suddenly sat up on the or table. She was feeling like she was falling and it scared her.

As soon as this happened, the GI dr said that my daughter only had mild gastritis that her Prilosec would fix. And that my daughter’s stomach problems were caused by “extreme anxiety” he told us she needed therapy and behavioral modification. And that he saw no need to see her back in the office.

It took us about four months, but we got a referral for a 2nd opinion from the only other pediatric GI in the city. His first order was for a calprotectin. We got the results yesterday from the Dr. with LabCorp, high is >120, and my daughter’s was 289. So she’s going to have a colonoscopy next week.

I’m glad on one hand, to finally have a reason that my daughter has gastric and abdominal pain so severe she can’t go to school right now. But on the other hand, I don’t know how to tell my daughter that this might be a whole life change permanently. But mostly I’m angry. I’m angry that the first GI I entrusted my daughter to for years never bothered to run a calprotectin test. I can remember all the times he told me to resolve the problem with 4 capfuls of mirilax in 32 ounces of Gatorade and 2 dulcolax tablets to get “this mild constipation” issue. That’s always his answer. My daughter has been living with severe pain and this &$#@ doctor told us to not make another appointment.

Can you please guide me to what I should be reading about and researching? My daughter has had 2 EGD’s but never a colonoscopy. How long after the procedure will we know what is wrong? She suffers from severe epigastric pain (stabbing, radiating around ribs and through the back) she also suffers from severe intestinal cramping which can subside some after she uses the restroom a few times. She suffers from chronic severe constipation. She’s literally been on mitilax 3-5 days a week for the past 6 years!) what kinds of disorders should I be researching besides IBD, Crohn’s, and UC?

Thank you so much for reading this and for any information you can provide!

 

[my little penguin]

Hugs
Has she seen child psychologist who handles medically complicated kids ?
Since she does have bad anxiety having someone to talk to about the stress of testing /dx/treatment as well as figure out what pain is amplified

Sounds like she “fights” the anesthesia to stay awake

Fecal caloprotectin 289 isn’t really high
Crohns flares are in the 1000’s
So she may have ibd /crohns/UC but that might not be the whole story
Since the number is at the lower end

Colonoscopy
Prep takes a day
Scope takes less than an hour
But longer for her to wake up
Biopsy take a week to get back

Imaging MRE is also needed since scopes can be clean but MRE shows damage
Pillcam is also part of the work up

Constipation can be part of Crohns
My kiddo has been on daily miralax for over 8 years now

 

[Maya142]

Hi and welcome!
It could be IBD, but it could be a number of other things - Celiac for example. I'm assuming she has been tested for infections?

There aren't many things that cause an elevated FC - it's usually IBD, infection or NSAID (Advil/Motrin/Aleve) use. Celiac or colon cancer can also make it go up. Like has been said before, 289 isn't that high for the IBD world, though every kid is different and it is elevated.

However, there are several parents here whose kids have had low Fecal Calprotectins. Mine is one of them. She actually had a FC that was right around 289-300 before she was diagnosed. Her GI didn't think it was high enough for Crohn's and she didn't have many of the "typical" Crohn's symptoms and so we didn't scope.

However, a couple years later, her belly pain got worse, she lost some weight and had constipation. She was scoped this time and she had Crohn's. Mild Crohn's, but it was most definitely Crohn's.

The one thing I have realized is that there is no real "typical" for Crohn's and all kids are different. Some kids may have the typical weight loss and bloody diarrhea. Others have more subtle symptoms - they are tired, have stomach pain or they may stop growing and gaining weight. Constipation is also common with some types of IBD - Crohn's that affects the small bowel for example.

My daughter is one of the kids with a low FC. Hers has gone up to about 480-490 when she is flaring. Mild flares and she'll only go up to 200. She still had clear Crohn's - ulcers in her colon and an inflamed and friable terminal ileum. Later scopes also showed ulcers in her TI. Her biopsies showed acute and chronic inflammation and well as granulomas.

Her symptoms are lower right quadrant abdominal pain and either constipation or diarrhea. She dealt with more constipation when she was first diagnosed and now tends to have more diarrhea. She does get nauseous too and has bad reflux.

my little penguin who posted above also has a kiddo who has a relatively low FC.

The scopes are really your best bet to figure out what is going on. Tell your GI that your child is anxious about sedation. They could have you see an anesthesiologist (or someone from the anesthesiology dept.) before the scope which might help calm her. You could also ask to have her speak to Child Life once she is checked in and waiting to go back.

Many hospitals will allow parents to go back until the kiddo is asleep. That can help too sometimes.

Finally, on the day of the procedure, if she is really anxious, TELL the anesthesiologist. They can give her Versed before she goes back or something else to help with anxiety.

 

[crohnsinct]

True. Elevated cal pro could before a few things and one suspect on my list would be celiac disease. Celiac can (doesn't have to) raise cal pro and since it isn't super high like in an IBD flare I would want that also crossed off the list. Blood tests are not always accurate for celiac and the gold standard is an upper endoscopy with biopsies.

You say as she was given the propofol she sat up and the GI ended things? Does this mean that he never completed the scope? Was she at a children's hospital? It seems to me the anesthesiologist or nurses or someone should have been able to help her calm down enough so the procedure could continue. What a shame and I am glad you are seeing another doctor.

It could also be IBD but you just won't know until the full scopes and I am glad you are going through with those to get some solid answers.

I second the other suggestions of seeing a psychologist well versed in kids with chronic health issues.

I do want to stress that while IBD does change things somewhat, with effective treatment, most kids with IBD live pretty normal and full lives. My oldest daughter has had IBD for 6 years. She was a honor student in high school, three season varsity athlete, volunteered with a resource center for families with a member with special needs, was an active member of her church youth group going on mission trips every summer. She just completed her freshman year of college (clear across the country) where she also was a honor student and swam on the school's club swim team. Sure she has dealt with flares from time to time but every kid deals with an illness or two that takes them out of the game for a bit. My younger daughter was diagnosed 3 years ago and is now a high school honors student, plays in the marching and jazz bands, plays varsity and travel softball.

The road to a GI diagnosis could be long and tough. Hang in there. Sounds like maybe you have landed with a good GI now. Don't get too ahead of yourself reading about all the different possibilities etc. We will be here if and when you need us.

 

[Maya142]

So she has never had a colonoscopy?

I somehow missed reading that she had a LOT of anxiety about the procedure. My daughter has PTSD and is also extremely anxious about procedures. Not scopes, but surgeries. But anyway, we have a letter from her psychiatrist that she has PTSD and has had many traumatic medical procedures and asking them to accommodate her.

So definitely let the anesthesiologist know. I would also suggest a consult with anesthesiology before the procedure but now it's probably less than a week away and you probably don't have time for that. So tell the anesthesiologist the issue with Propofol and that she is anxious about that.

They will usually give oral Versed before you go back to the room. They can also give IV Ativan or something like that. Having those medications before she is in the room is really helpful. If they can't do that, they will give her something as soon as they have taken her back, but honestly it helps most if they give something before she goes back.

The anesthesiologist can also use something else to put her to sleep - sometimes they give kids inhaled meds (with a mask) and they get to choose the flavors.

Good luck!!!

 

[Michellelh]

Thank you for the information. We are currently working on getting her in to see a psychologist. But right now we’re paying for physical therapy, headache neurologist, chiropractor, and now the colonoscopy. Right now I’m so financially strapped I’m having a hard time buying groceries.

Thanks for letting me know that her calprotectin level isn’t “super high” that makes me feel better. Yes, she fights the anesthesia because she’s afraid to go under. She’s very fearful of any new medical procedures. So you think I’ll need to get her into an abdominal MRI or CT scan?

Thanks!

Hugs
Has she seen child psychologist who handles medically complicated kids ?
Since she does have bad anxiety having someone to talk to about the stress of testing /dx/treatment as well as figure out what pain is amplified

Sounds like she “fights” the anesthesia to stay awake

Fecal caloprotectin 289 isn’t really high
Crohns flares are in the 1000’s
So she may have ibd /crohns/UC but that might not be the whole story
Since the number is at the lower end

Imaging MRE is also needed since scopes can be clean but MRE shows damage
Pillcam is also part of the work up

Constipation can be part of Crohns
My kiddo has been on daily miralax for over 8 years now

 

[Michellelh]

She’s had blood tests for food allergies, but it came back negative. No other tests done. She rarely uses nsaids because they can cause rebound headaches... my daughter suffers from severe chronic migraines. That’s the other thing keeping her out of school.

I will talk to the anesthesiologist next week about giving her something to help her go to sleep. She’s pretty nervous about the test. We were able to stand at the door to the room they scoped her in last time. That’s when we say her reaction when falling asleep.

Thank you for your information!

Hi and welcome!
It could be IBD, but it could be a number of other things - Celiac for example. I'm assuming she has been tested for infections?

My daughter is one of the kids with a low FC. Hers has gone up to about 480-490 when she is flaring. Mild flares and she'll only go up to 200. She still had clear Crohn's - ulcers in her colon and an inflamed and friable terminal ileum. Later scopes also showed ulcers in her TI. Her biopsies showed acute and chronic inflammation and well as granulomas.

Her symptoms are lower right quadrant abdominal pain and either constipation or diarrhea. She dealt with more constipation when she was first diagnosed and now tends to have more diarrhea. She does get nauseous too and has bad reflux.

my little penguin who posted above also has a kiddo who has a relatively low FC.

The scopes are really your best bet to figure out what is going on. Tell your GI that your child is anxious about sedation. They could have you see an anesthesiologist (or someone from the anesthesiology dept.) before the scope which might help calm her. You could also ask to have her speak to Child Life once she is checked in and waiting to go back.

Many hospitals will allow parents to go back until the kiddo is asleep. That can help too sometimes.

Finally, on the day of the procedure, if she is really anxious, TELL the anesthesiologist. They can give her Versed before she goes back or something else to help with anxiety.

 

[Michellelh]

Thank you for your response! The gi went ahead and performed the scope, but we heard him mutter under his breath, “well I guess I know what the problem is now.” And when he came out 20 minutes later, the only thing he talked about was that she had “mild gastritis, which the Prilosec she’s already taking will fix that.” Then the rest of the conversation was about her reaction to the medicine “isn’t normal, and that tells me that this is the reason for her problem. You need to get her in to see a child psychiatrist soon to resolve the stomach matter. As of right now, she does not need to see me in the office again.”

Thank you for telling me your family’s story. I’m glad to know that this can get better. I’m just not sure how we will change our lives and get my daughter better. But I know the answers are coming.

True. Elevated cal pro could before a few things and one suspect on my list would be celiac disease. Celiac can (doesn't have to) raise cal pro and since it isn't super high like in an IBD flare I would want that also crossed off the list. Blood tests are not always accurate for celiac and the gold standard is an upper endoscopy with biopsies.

You say as she was given the propofol she sat up and the GI ended things? Does this mean that he never completed the scope? Was she at a children's hospital? It seems to me the anesthesiologist or nurses or someone should have been able to help her calm down enough so the procedure could continue. What a shame and I am glad you are seeing another doctor.

It could also be IBD but you just won't know until the full scopes and I am glad you are going through with those to get some solid answers.

I second the other suggestions of seeing a psychologist well versed in kids with chronic health issues.

I do want to stress that while IBD does change things somewhat, with effective treatment, most kids with IBD live pretty normal and full lives. My oldest daughter has had IBD for 6 years. She was a honor student in high school, three season varsity athlete, volunteered with a resource center for families with a member with special needs, was an active member of her church youth group going on mission trips every summer. She just completed her freshman year of college (clear across the country) where she also was a honor student and swam on the school's club swim team. Sure she has dealt with flares from time to time but every kid deals with an illness or two that takes them out of the game for a bit. My younger daughter was diagnosed 3 years ago and is now a high school honors student, plays in the marching and jazz bands, plays varsity and travel softball.

The road to a GI diagnosis could be long and tough. Hang in there. Sounds like maybe you have landed with a good GI now. Don't get too ahead of yourself reading about all the different possibilities etc. We will be here if and when you need us.

 

[Michellelh]

You are correct, my daughter has never had a colonoscopy before. She’s had 2 EGDs. Yes, she has a lot of fear and anxiety about health treatments and tests. I don’t have a letter for accommodations but I will take your advice and talk to the anesthesiologist before the procedure and let them know what’s going on and see if they can give her something. As for the medicine... they gave her the medicine in the mask when she was 8 and she now has a huge fear of the mask.

So she has never had a colonoscopy?

I somehow missed reading that she had a LOT of anxiety about the procedure. My daughter has PTSD and is also extremely anxious about procedures. Not scopes, but surgeries. But anyway, we have a letter from her psychiatrist that she has PTSD and has had many traumatic medical procedures and asking them to accommodate her.

So definitely let the anesthesiologist know. I would also suggest a consult with anesthesiology before the procedure but now it's probably less than a week away and you probably don't have time for that. So tell the anesthesiologist the issue with Propofol and that she is anxious about that.

They will usually give oral Versed before you go back to the room. They can also give IV Ativan or something like that. Having those medications before she is in the room is really helpful. If they can't do that, they will give her something as soon as they have taken her back, but honestly it helps most if they give something before she goes back.

The anesthesiologist can also use something else to put her to sleep - sometimes they give kids inhaled meds (with a mask) and they get to choose the flavors.

Good luck!!!

 

[my little penguin]

Unfortunately what your old GI was referring to is correct in a lot of cases
When a person has an anxiety disorder (not just slightly afraid of things )
Their bodies /Brain fights the anesthesia and causes reactions of sitting up or waking up very early from anesthesia
It’s a clear warning sign

Stomach issues and anxiety go hand in hand due to gut brain axis

Given her fecal cal she probably does have something going on
Whether that’s Crohns or celiac or many other things that can be helped medically

But given what you stated happened at her last egd and her high level of anxiety
It best to see a psychologist (only talks no meds) to help her deal with the anxiety
Anxiety that it can be dealt with it can get worse and then you have a much bigger issue

 

[Michellelh]

Thank you for your additional response! Yes, my daughter has anxiety around tests. But she still faces her fears and takes the treatment. She has chronic migraines and gets 4 sessions of nerve blocks in her scalp for treatment every few months. The first time she was afraid. Saturday will be the 4th session she’s had and she just sits down and stays calm during the procedure. And it’s a very painful shots. The reason she reacted so strongly when put under anesthesia for the EGD is because she had a terrible experience when she was 8. They gave the anesthesia to her in the mask, and she started crying. So the anesthesiologist forced the mask over her nose and mouth and kept it clamped down on her face until she fell asleep. That’s why she has anxiety over getting out to sleep, but not with other “new” medical things. She had a psychologist the last time she went through this from age 8 all the way to age 12. We will get her in to see a mental health professional again, but we have to have a break in the treatment cloud because we live on a small steady income and every penny we have (in addition to our grocery money) is going to her dr visits and tests.

I appreciate you sharing your experience and knowledge with me!

Unfortunately what your old GI was referring to is correct in a lot of cases
When a person has an anxiety disorder (not just slightly afraid of things )
Their bodies /Brain fights the anesthesia and causes reactions of sitting up or waking up very early from anesthesia
It’s a clear warning sign

Stomach issues and anxiety go hand in hand due to gut brain axis

Given her fecal cal she probably does have something going on
Whether that’s Crohns or celiac or many other things that can be helped medically

But given what you stated happened at her last egd and her high level of anxiety
It best to see a psychologist (only talks no meds) to help her deal with the anxiety
Anxiety that it can be dealt with it can get worse and then you have a much bigger issue

 

[crohnsinct]

Is she n state insurance or insurance through your or your husband's job? The reason I ask is because sometimes, even though you have insurance through your job, you may be able to get a child (she is currently under 18) covered on the state insurance.

Also, I encourage youth reach out and talk to a social worker at the hospital. They are very creative with problem solving financial issues. There might be a fund they can draw from for you to help pay the patient portion of the bills etc. AS a last resort there are also very generous payment plans that most hospitals are willing to set up. I know it stinks to have to deal with the financial issues on top of everything else but there is help out there if you know where to look.

 

[Maya142]

Your poor girl. Since there isn't much time before the next procedure, ask if you can go in an hold her hand. Generally they will let you, especially for a scared, anxious kid.

You could teach her something like progressive muscle relaxation - there are plenty of videos online or on free apps. You can practice it at home before she goes. Have her go from her toes to her head, tightening every muscle for a couple seconds and then relaxing it.

There is also belly breathing - diaphragmatic breathing. There are many apps that will teach that too.

We use i sleep easy for guided meditations for sleep and relaxing.

My daughter has had similar experience with anesthesia. Once she woke up and before it wore off, she was paralyzed for a couple seconds and was aware but couldn't move. That freaked her out.

She has also had painful procedures where they have been unable to give her enough sedation.

All of this led to PTSD, so I would definitely advise seeing a therapist when she can. I would ask a social worker - they may be able to help you with that.

 

[my little penguin]

Child life could get involved for this procedure
They can help her a lot if you ask before hand

 

[Michellelh]

Thank you for asking that! She’s on my husband’s employer-sponsored health insurance. But after we get the results of her colonoscopy, I’ll definitely look into getting her on Medicaid. That’s a great suggstion.

I talked to the hospital’s financial counselor today, and I have to wait until the dr’s office finishes sending the colonoscopy paperwork and then I should be able to make an arrangement for repayment. One less thing to worry about!

Is she n state insurance or insurance through your or your husband's job? The reason I ask is because sometimes, even though you have insurance through your job, you may be able to get a child (she is currently under 18) covered on the state insurance.

Also, I encourage youth reach out and talk to a social worker at the hospital. They are very creative with problem solving financial issues. There might be a fund they can draw from for you to help pay the patient portion of the bills etc. AS a last resort there are also very generous payment plans that most hospitals are willing to set up. I know it stinks to have to deal with the financial issues on top of everything else but there is help out there if you know where to look.

 

[Michellelh]

Thank you for your suggestions! The breathing exercises will be helpful. I’m sorry your daughter had a bad surgery experience. It’s terrible. In my case, I felt helpless because I couldn’t be there to protect her. I appreciate you sharing that with me.

Your poor girl. Since there isn't much time before the next procedure, ask if you can go in an hold her hand. Generally they will let you, especially for a scared, anxious kid.

You could teach her something like progressive muscle relaxation - there are plenty of videos online or on free apps. You can practice it at home before she goes. Have her go from her toes to her head, tightening every muscle for a couple seconds and then relaxing it.

There is also belly breathing - diaphragmatic breathing. There are many apps that will teach that too.

We use i sleep easy for guided meditations for sleep and relaxing.

My daughter has had similar experience with anesthesia. Once she woke up and before it wore off, she was paralyzed for a couple seconds and was aware but couldn't move. That freaked her out.

She has also had painful procedures where they have been unable to give her enough sedation.

All of this led to PTSD, so I would definitely advise seeing a therapist when she can. I would ask a social worker - they may be able to help you with that.

 

[Michellelh]

When I talk to the hospital again, I will ask for this service/department to see what they can help my daughter with.

Child life could get involved for this procedure
They can help her a lot if you ask before hand

 

[my little penguin]

The hospital social worker can push the medical assistance paperwork through faster for you
It can act as a secondary insurance and cover copays deductibles etc...

 

[Farmwife]

Hi and welcome
I wanted to come in and say that we have the secondary state insurance.
It had been a huge life saver for us.
My husband has a good insurance thru his work but we still owe a lot.
The secondary insurance picks up most everything else.
In Michigan is called Michigan Special Children's Health Insurance.

 

[Anna's Bandit]

I dont really belong on this thread, but I will say that before one of my colonoscopy/endoscopy procedures I informed the staff/doctor that I had anxiety. Because of that they gave me extra Versed. I was totally sedated during the entire procedure.

Sending my support to all the little ones. ❤