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Crohn's Disease Forum » Parents of Kids with IBD » CRP, Sed Rate higher... now what?


01-05-2012, 03:27 PM   #1
Tesscorm
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CRP, Sed Rate higher... now what?

Stephen's CRP has been climbing the last couple of tests... last week's test came back at 31. When admitted to hospital, mid-May, it was 190, after a week it dropped to 20. At end of June (after 5 weeks on EN), it was 7, end of August it was 12 and now 31. His SED rate is 30 (I don't have his previous levels). His HGB is 123 (was 120 in August).

So now what? My husband is saying it could be from his knee injury??? Physiotherapist believe he stretched or had a small tear in his MCL which would create inflammation. However, he hurt his knee on December 8 or 15; would it still be causing a higher inflammation level on Dec. 29?

I've always known EN doesn't have as high a success rate of maintaining remission as other meds but I've always hoped it would be enough to keep him well for a long while. Now I'm worried that I'm going to have to start considering other meds. Maybe I'm jumping the gun here, it's just that those mom worries come charging in and start pounding away!

My husband doesn't think the results warrant a call to the GI yet, so, guess I'll be keeping a closer watch on everything.
01-05-2012, 04:11 PM   #2
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I would think those test results DO warrant a call to the GI actually. I'm sorry.
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01-05-2012, 04:35 PM   #3
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Thanks Misty,

Sorry, I didn't explain the reason why I might 'not' call the GI now (it was all in another post - "PITA mom on the loose")... we actually have an appointment already scheduled for Feb. 22 with the GI. I took my son to the walk-in clinic last week because he was having some symptoms (pale, less of an appetite, some weight loss, some stomach pain) and specifically requested these tests. My intent was that if they were (much?) higher, I would call the GI.

But, my husband's hesitation to call the GI right away is due to Stephen having had two recent injuries, being away from hockey for 7 weeks could have caused some muscle (weight) loss and Stephen saying that the pain has been gone for a few days now... then again, it could be all Crohns!!! Ugghhh!!

Under these circumstances, would you still call the GI or just watch and wait a bit? I'm just not sure either way!
01-05-2012, 04:42 PM   #4
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Ah...I was going to read that thread...now I will!

I was always told...if in doubt and you have to ask...yes, call the Dr's or GI's. Had I listened...well. Always better safe than sorry says I now!!!

After all, he's your baby. And there isnt anything more important in life than their health. (grandma here talking)
01-05-2012, 04:43 PM   #5
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I took my son to the walk-in clinic last week because he was having some symptoms (pale, less of an appetite, some weight loss, some stomach pain) and specifically requested these tests. My intent was that if they were (much?) higher, I would call the GI.



Under these circumstances, would you still call the GI or just watch and wait a bit? I'm just not sure either way!
With the symptoms you describe & with the CRP going up IMO your son needs to get this under control ASAP.

I wish your son well
01-05-2012, 04:48 PM   #6
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Hey Tess,

I would call the GI, for the following reasons...

1. I personally do not think that the injury he sustained would have that effect on his CRP or his ESR. I'm not saying it wouldn't effect it at all but to me it seems more in line with something that has been creeping up since August.

2. His Hb is sitting at the low end of normal and would be considered below normal for a male. This may well be the reason why he looking pale to you. I see that it hasn't changed much so while holding his own with it, it isn't improving.

Have they also done levels for B12, Iron Stores, Folate and Vitamin D?

Dusty. xxx
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01-05-2012, 05:09 PM   #7
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Hi Dusty,

They did test for Vit D in August, forget the level now but it was low. Since then he's been taking Vit D supplements (about 2000 per day). Of course, with winter now here, this could also be reducing his current D level.

The others, I'm not sure... I did ask about B12 very early on, at the time I was told it wasn't necessary. Also told that a multi-vit wasn't necessary as he was continuing the EN therapy and this would provide him with most of the necessary supplements. The only supplements that were recommended were calcium and vit. D (and I've addedd Krill oil).

My concern is also that his CRP has been moving up... if it were a one-time increase, I'd probably feel better just watching but because its gotten higher twice... ugghhh, ugghhh, ugghhh!!!

My husband took Stephen to the doctor, so haven't had much of a chance to really talk with him... going home now, so I'll see the actual report. Maybe there are some other results to consider.

I just knew something was 'off'...
01-05-2012, 05:24 PM   #8
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Yeah, I know you are on alert Tess...

Regardless of what they have told you I would be getting them checked. Can you ring your GP and get her to fax a request straight to the lab and get them done that way?

Is the VIT D supplement over and above what he is receiving with the calcium?

Mum!

Dusty.
01-05-2012, 07:34 PM   #9
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Unfortunately, another reason I want to change Stephen's GP is that she is very unaccommodating when it comes to requests. I hate to say it but, in Ontario, doctors get paid per visit, not by telephone consults, etc. and I think that plays into her policies. To do ANYTHING with her, I have to take Stephen in and when you consider the distance (30+ min drive) plus her part time hours and Stephen not wanting to miss more school, it makes it quite annoying and difficult. Although she received a copy of these blood results, her office wouldn't give me the results over the phone nor send them to me - either I had to take a day off work and Stephen off school (due to her schedule) or wait until February for a Saturday apptmt! But, this I'll deal with... one way or another, I'll find Stephen another doctor, just need some time to focus on this.

Have his test in hand now:

CRP - 31.5
HGB - 123 (was wrong in my earlier post, last test was 133, not 120)
ESR - 30
Mono - 1.3

All else was normal - WBC, RBC and Ferritin (29)

His vitamin D comes from the calcium/D tablet (600), EN formula (835) and two supplements (400 ea). A bit more than 2000 per day but he only has the EN formula 5 nights per week.

I've decided I am going to contact his GI. Going to send nurse an email with the results and request either an appointment or requisition to run test again in a week or so. I'm fine waiting a week or so to retest on the off chance it is related to his injuries or the cold he was fighting last week. Make sense?
01-05-2012, 08:09 PM   #10
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Makes perfect sense. There is certainly nothing there that indicates urgent attention.

That is a right pain with the GP...booooo! I hope the Gi will do it for you. Good luck!

Now the Vit D. Since Matt is deficient I have been reading up on it a fair bit and from what I have read, the Vit D that is in tablet form has very little absorbency, I wouldn't count it toward the amounts. Studies point to supplements in gel form as the most effective. Are they what the 400 ones are? Matt's gel caps are 1,000 IU.

Dusty. xxx
01-05-2012, 08:28 PM   #11
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hmmm... neither his D supplement nor the Calcium+D are gelcaps. That means he's really only been getting the 835 IU he gets from the formula! I'll pick up some new ones (gel caps) tomorrow. Thanks!
01-06-2012, 07:32 AM   #12
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Dr. John Howard is the best gastro guy in Ontario according to ratemydoc.com. He is in London. I know its a bit of a drive, but he does do phone consults and tries to time visits for out of town kids when roads shouldn't be too bad. he personally called me at work( and was on hold waiting for me for around 10 min.) to let me know Luc's labs were not good and discuss treatment options. I highly recommend him and he is great with Lucas and explaining everything! Hope this helps. Off to work.
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01-06-2012, 11:38 AM   #13
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Tess,
I have to agree I think you need to take him to the GI. ALso about the vitamin D. Liquid Vitamin D is best absorbed. They sell it here in the states. I have the whole family taking it.
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01-06-2012, 11:56 AM   #14
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Hi Rachel - Thanks for the info. I'm happy with his Gastro, it's his GP I want to replace. His GI's clinic is usually really great - nurses are helpful, results reported and/or emailed, dietitien accessible, 24 hour GI hotline, assistance with insurance, etc. but, ironically, while they have been reorganizing their systems to further improve services and response times, Stephen's apptmt has been postponed 3 times! (I think his GI was away which is why apptmts have been reshuffled.) Unfortunately, we'll be moving soon as he's with Hospital for Sick Children and will be transferred to Mount Sinai once he turns 18 (in July).

But, I will keep definitely keep your GI in mind as Stephen is considering university in London. (His current GI clinic will also transfer him to an out of town GI, at our request, if does go to university out of town.)
01-06-2012, 11:59 AM   #15
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Thanks Kim - I'm waiting to hear back from Stephen's nurse. She's away until Tuesday but, I don't think it's a problem until then. And, thanks for the info re vit. D - am going to buy some today. (By the way, hope you get a positive response from Caitlyn's doctor re the LDN on Monday!)
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