Great fecal calp...but hemoglobin still low

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Henrietta78

Henrietta78

Joined
Nov 30, 2012
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Henry had labs done and his fecal calprotectin was an all-time low 21.4!!! It has been trending downward from a high of 884 in Sept 2012, but this was a huge drop. All other labs are completely within normal range, but his hemoglobin is still on the low end of normal, only 11.6. It is not iron deficient anemia, as he was still only 11.7 while taking an iron supplement (since discontinued since it didn't seem to help anything.) Any thoughts as to what would cause this?

Also, we finally scheduled his colonoscopy for the end of June. Best case scenario: no indication of chronic inflammation, we can challenge the diagnosis and start getting him off the maintenance med (sulfa). Worst case: despite good labs, good growth, and literally the most beautiful perfect poop you can imagine, inflammation is still present, and we need to up our maintenance med game. We are truly at a crossroads and just need to see inside to know. I am trying to prepare myself for the latter so I can be pleasantly surprised if it is the former.
 
Has he had Iron Stores, Folate and B12 done? If not have those done.

A deficiency further down the line, as other factors that help support a healthy Hb, may be playing into it.

Where is your son’s Crohn’s located?

So fab to hear all else is good! :dusty:

Dusty. xxx
 
Did they do iron studies including ferritin etc???
Any imaging ?

DS had. Low ferritin ( not anemic ) but his fecal is below detectable Limits ( 15)
Lowest value every.
Gi felt the low ferritin was due to his body having inflammation for so long now that it's gone - it's playing catch up.
Did you try different supplement types ? How did you take them when etc...

Good luck
 
He is still considered "IBD indeterminate", but issues seem to be localized to his colon; only reason he was not given a true UC diagnosis is that they could not say definitively it was not Crohn's. Anything else iron stores, folate or b12 would be called on his lab results? I don't see those listed specifically...

They did an Iron and TIBC, all normal. Ferritin levels was 29, lowest in last two years was 24. He was taking iron ferrous sulfate (liquid) for awhile but GI doc told him he could stop as it didn't do anything to increase hemoglobin. He was taking it once daily , at beditme, and never with dairy or calcium fortified non-dairy milks, but always with a multi-vit containing vitamin c. He also does take a folic acid supplement to mitigate effect of sulfasalazine.
 
My dd ferritin has never been out of range but she has concurrent IDA and ACD. You need iron studies as ferritin alone doesn't give enough information. She also in remission with bordineline anemia.
 
I'm so excited for you that the FC is good!!!! I hope the scope results match.

:ghug:

J.
 
Hi Guys...quick update. Did scopes last Friday; aside from a blotchy irritated area in the stomach, his whole GI system appears "healthy" according to the Dr. The dr. didn't seem too concerned about the irritated area in his stomach, she kind of glossed over it, I'm sure she was waiting to determine if it was an issue until after the biopsy results come back. He has his follow up appointment next week to discuss biopsy results and treatment moving forward. Given the chance there could be microscopic inflammation I'm a bit nervous to hear the findings.

As far as the prep for the scopes, my little guy was a champ! He was more cooperative than any mother has a right to ask for. Of course he was rewarded with copious amounts of Legos...
 
Glad the scope at least looked good.
Hope the biopsy results are similar.
DS has lots of Legos and Star Wars from Gi stuff. ;)
 
Oh man...Lego Star Wars are all over my house. This morning I found Darth Vader's helmet in my bed. Seriously.
 
Ah yes, I recall those days and the thousands of dollars spent on Legos. He was in a research study for Humira and they gave him huge kits three or four times. He made out like a bandit - or perhaps I should say a pirate since one of the kits he got from them was the dragon pirate ship.

The Legos now occupy three LARGE bins in my son's room and, despite years of picking them up and putting them in a bin, I still find them here and there. How that helmet or wing piece got in a seat cushion or on the floor in the corner is a mystery...
 
Glad to hear scopes were visually good. I enjoyed the Lego days. Sadly it's over now. All computer games and iPad
 
The appointment went well, although I was struggling to keep up with all the terminology, I felt a bit like I was listening to a foreign language with only basic knowledge of the language. Basically, no indication of ongoing inflammation, meaning that if it is IBD, it is being well controlled. :)

There were some EOS cells present in the lower part of the esophagus, which she thought were indicative more of reflux than EoE since they were not distributed throughout the whole esophagus. For this she prescribed a two month course of Prevacid. This threw me for a loop because DS has never had any symptoms of reflux aside form being a "happy spitter" as a baby.

So...plan of action is officially...no action. Staying the course with current medications/supplements (sulfasalazine, vit D, lactobacillus, multi-vit and folic acid) with labs in 4 months. Intention is to watch him clinically, and get him through the growing years. If all stays well from that standpoint, in a few years we can try taking him off meds and repeat scopes to see what effect that has. But for now...I am feeling pretty happy to keep up current treatment and am thankful that he is growing and pretty darn healthy.
 
Not to be a downer but did they also do imaging studies ( mre /pill cam)
Since a lot of kids have undetected issues there that lead to scarring and surgery .

If he did then that's great the sulfanazine is working miracles for him.
 
Brian's Mom, yes, the possibility that he had some sort of acute inflammation at the time of diagnosis rather than chronic inflammation has been brought up. He has always been a mild case of IBD indeterminate. That is probably just wishful thinking.

MLP, I will ask his doctor about imaging/pill cam and see what she says. I guess because all his labs are normal, fcp is normal, and he is not symptomatic and is growing really well, maybe she is not concerned?
 
Has the hemoglobin levels gone up at all since dx? If so what was the starting level and what time period has the increase been over.
 
Cathernie...yes, hemoglobin up since dx in 2011. At dx was around 10; since then has always tested between 11.3-11.6
 
This is great news! I'm sure you'll watch him like a hawk. Praying it was a blip on the radar screen and he'll be happy & healthy.

J.
 
My daughter is also in remission with low calprotectin. It has taken two years to get her hemoglobin from 9.0 to 11.5.

Your son hemoglobin is trending the right way. I give it a little more time.

You may want to look at having B12 and folate.
I know that supplementing dd low normal b12 seems to have helped.
 

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