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Crohn's Disease Forum » Parents of Kids with IBD » New to Forum Questions


08-16-2016, 03:41 PM   #1
pcsg560
 
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New to Forum Questions

My 5 year old was diagnosed right before her 4th birthday with "indeterminate colitis". Her ped gastro said he is almost certain its UC (pancolitis). She was put on 3 pills of Pentasa daily and 2 VSL#3. Never taken steroids since the Pentasa did the trick quickly after her scope and doing well the last 18 mos. Her doc even talked about rescoping her in the next 2-3 years to see if she still had any sign of UC becuase she was doing so great. Her labs were perfect for the last 18 months. A few weeks ago, she had a small streak of blood in her stool and that has continued off and on for almost the last month. No pain, no diarrhea, no fever. Nothing but a small bit of blood on her last piece of stool that comes out and then a bit on the TP. We, along with the doc was sure it was a fissure becasue she had no other symptoms. Then, we had her labs done at her appt two weeks ago and her CRP was 15 and her Sed Rate was 25. The doctor wasnt convinced it was a flare because of her lack of symptoms. He said it could have been a little virus or something, but he wanted to increase the Pentasa to 4 per day becasue she has had a weight increase of almost 25% since her diagnosis so it would make sense to go up on her dose. He told us to repeat the labs in 1-2 weeks which is now. We did labs this morning. She has remained the same with little to no blood the last 3 days. So the labs from this morning the CRP came down from 15 to 8 with a perfect CBC. Her sed rate actually went up from 25 to 37 which concerned me but I don't know how any of this works. So he says he isn't overly concerned and to continue the increased Pentasa dose and we will recheck labs in 3 weeks to make sure that the CRP comes down to normal levels. No mention of her Sed rate at all. If her CRP remains on a downward trend, we will do nothing and continue our current regimine. If it isn't going down or going up we will rescope to find out where inflammation is. If its just in the lower part of the large intestine we will do canasa suppositories. If its higher, we will discuss Imuran. So my concerns are:

1. why did the sed rate go up but CRP went down?
2. If we do have to do Imuran, I am very concerned about the risk of lymphoma and skin cancer along with other side effects.
3. What has been your experience with these things?

Thanks so much!
08-16-2016, 03:58 PM   #2
Clash
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Welcome to the forum.

I'm going to tag a couple of parents who have young kids or there kids were dxed at a younger age. Tagging them will hopefully bring them by to give their experience. I think most of these kids are dxed with CD or have another dx entirely that causes colitis.

As far as the CRP and SED rate, they are both inflammatory markers but operate differently. I'll tag Dusty she has a good explanation, also I tag Scipio as he may can give insight as well.


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Clash
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
08-16-2016, 04:26 PM   #3
DustyKat
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Hi pcsg560 and welcome.

I can try to give some sort of explanation to why the sed rate has trended up and the CRP down.

As Clash has said they are both inflammatory markers. It is good to get both done as some people are more sensitive to one marker than the other, some to both markers and some to none.
The difference between the two is their response time to inflammation. Sed Rate responds and builds more slowly, so whilst treatment was escalated the Sed Rate is likely lapsing behind in both its peak and response. CRP responds more quickly to both inflammation and response to treatment and is the go to test when looking to how someone has responded when treatment is changed or upped. That would be why the doc is more interested in the CRP and not the Sed.

I think in your case it would also be worthwhile asking the doc to do faecal calprotectin (FC) testing alongside the blood testing. It is also an inflammatory marker but specific to the bowel, it is the stool that is tested. The problem with the serum markers of CRP and Sed Rate is that they are reflective of inflammation anywhere in the body but when used with FC I think gives a more holistic impression of what may be occurring.
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08-16-2016, 04:34 PM   #4
pcsg560
 
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Do you have any experience with Imuran? Im so terrified about this drug.


Hi pcsg560 and welcome.

I can try to give some sort of explanation to why the sed rate has trended up and the CRP down.

As Clash has said they are both inflammatory markers. It is good to get both done as some people are more sensitive to one marker than the other, some to both markers and some to none.
The difference between the two is their response time to inflammation. Sed Rate responds and builds more slowly, so whilst treatment was escalated the Sed Rate is likely lapsing behind in both its peak and response. CRP responds more quickly to both inflammation and response to treatment and is the go to test when looking to how someone has responded when treatment is changed or upped. That would be why the doc is more interested in the CRP and not the Sed.

I think in your case it would also be worthwhile asking the doc to do faecal calprotectin (FC) testing alongside the blood testing. It is also an inflammatory marker but specific to the bowel, it is the stool that is tested. The problem with the serum markers of CRP and Sed Rate is that they are reflective of inflammation anywhere in the body but when used with FC I think gives a more holistic impression of what may be occurring.
08-16-2016, 05:17 PM   #5
Maya142
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My daughter has been on Imuran. Yes, the risks are scary but untreated IBD is even scarier!

Has your GI ever mentioned Methotrexate? Many GIs in the US are now using that more than Imuran because Imuran has additional risks. Methotrexate is also an immunomodulator and works very well for some kids.

My daughter was unable to tolerate Methotrexate but is doing well on Imuran. She had some nausea when we started it, but it quickly went away. In the beginning, they typically do weekly labs to make sure it is not affecting the white blood count or liver, so she will be very carefully monitored if she does go on it.

There is a skin cancer risk with Imuran, so we do try to keep my daughter well protected -- lots of sunscreen and she tries to stay out of the sun. Besides that, we don't really do anything special.

Good luck!
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08-16-2016, 05:24 PM   #6
DustyKat
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Yes we do.

First up our stats, my kids were diagnosed much older than your little one, 14 and 17 years old. My daughter was on it for a number of years before deciding she no longer needed treatment. My son has been on it for 6 years and is now on a biologic too.

We have had no issues with the drug, the most important thing if you do go down this path is to ensure the docs are on top of regular blood screening. It will start out as weekly for 4 weeks, then move fortnightly, then monthly and finally every 2-3 months.

I hear and understand your fear mum, we all do. Please know that you are not alone in how you are feeling and know that we have all been down this awful path of having to decide these things. I often say that I feel the decision to put my children on these drugs was easier for me that many of you. I know that sounds weird but the only reason i say it is because I have seen the ugly side of this disease, I very nearly lost my daughter to it but please let me add in here that she was undiagnosed at the time. I am in no way saying this to scare you and I hope Iím not because that is not my intention. You are in a different situation, your lass is diagnosed and in a controlled situation but that is what can make these decisions harder IYKWIM.

Because IBD is not curable at this point in time we have work at keeping our kids disease under control so they can get out and enjoy life to the full. I know you canít compare apples with oranges but maybe it might help to look at these medications as how they classed, maintenance. They maintain the status quo just as the little boy down the road has to have insulin everyday, or the little girl at school that takes her anti epileptics or yet again the child that uses their puffers for asthma each day before running to catch the school bus. They are all necessary maintenance medications that allow those children to live as normal a life as possible.
08-16-2016, 08:17 PM   #7
my little penguin
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Ds was on the sister drug 6-mp at age 7 about a month after he was dx
He took pentasa for a month - it did nada for him
6-mp didn't do a whole lot for him either but we couldn't get the levels up high enough without it going to raise his liver enzymes.
I will say I second the fecal caloprotectin test to check
Has she ever had an Mre or pill cam ???
Since a lot of young kids start out with "UC" only to have it changed to crohns as they get older .
Inflammation in kids tends to change over a 10 year period from dx .
Typically not the good kind
Meds used to scare me a lot
But disease scares me so much more
I go with what works for my kid
Once you see them at close to normal again
You don't realize just how sick they were before
The first year after dx we tried many different meds for Ds but thought he was ok
After his remicade infusions started I realized he wasn't really ok

Fingers crossed its just a blip and her numbers go back to normal soon
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08-18-2016, 10:10 AM   #8
kimmidwife
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pcsg560,
I agree with Dustykat about asking for a fecal calprotectin. It is a very easy test to do just a simple stool sample. It will pinpoint if the sed rate and CRP are tracking intestinal inflammation or if something else is going on. Also has your daughter been seen by an immunologist?
The newest recommendations are that kids diagnosed under 12 should be seen by an immunologist. Certain things can have IBD as a secondary issue with immune problems being the primary issue.
If you have not seen one ask your doctor to refer you.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
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