Help with Understanding Daughter's Blood Tests!

[Koothie]

For over a month, my 17 year old daughter has had moderate to severe abdominal pain near the belly button. In the beginning, she had some bleeding, but she hasn't had any bleeding for a couple of weeks now. Appendicitis was ruled out. She is anemic and has elevated Sed rate and CRP. She had an endoscopy and colonoscopy two weeks ago and there is no colitis, no celiac. She had normal disaccharidase. She is still in a lot of pain. She always has pain within 15-20 minutes after eating anything. Doc ordered Levsin for her. She is scheduled for an MR Enterography this Monday, the 3rd. Doc wants to look more at the small bowel. Still looking for Crohn's. She had bloodwork again today. Not everything is back yet, but she still has an elevated CRP (30) 0 - 5 mg/L. Three weeks ago it was 32. Her blood levels are
HGB 12.0 - 16.0 g/dL 10.5 L
HCT 36.0 - 46.0 % 34.5 L
MCV 78.0 - 98.0 fL 72.5 L
MCH 25.0 - 35.0 pg 22.1 L
MCHC 32.0 - 36.0 g/dL 30.4 L
RDW 11.5 - 15.5 % 16.2 H
Just waiting for the Sed Rate and the other labs to come back. Is the CRP high for a 17 year old girl? Is her anemia really low? I'm eager to talk with the doctor about all this!
I have had Crohn's since 1991.
Thank you all for your advice and guidance.

 

[Koothie]

Any advice and guidance would be greatly appreciated!

 

[Maya142]

A CRP of 30 is high for a teenage girl. A hemoglobin (HGB) of 10.5 is low and would count as anemia but it's not too bad. My daughter quite often has a hemoglobin of around 10.5 (she is 18) and her doctors are not too concerned about it.

You should really talk to a doctor about her blood tests - no one here can really tell you much more. Hope the MRE gives you some solid answers.

 

[DustyKat]

I’m not knowledgable enough to pick through all the numbers and say whether her anaemia is really low but looking at the haemoglobin in isolation…she is certainly low but I wouldn’t put that figure at really low.

Looking at the main indices - low HGB, low HCT, low MCV, low MCH and high RDW all point iron deficiency anaemia. This will fit in with the fact that she has had bleeding but also look to other contributing factors that may be present…

• Is she also menstruating and how heavy are her periods.
• What is her diet like, could that be also be a cause.
• Then there are her symptoms, are they preventing her from absorbing iron or is she not able to take a sufficient amount orally because of them.

Having Crohn’s yourself I imagine you know what I am getting at with the points above…the first one aside these may point to a GI issue. :ghug:

Do you have the platelet count?

Dusty. xxx

 

[DustyKat]

Oops, forgot the CRP, yes it is high. The normal reference range given is for all ages.

I assume you are outside the US? The range and units of measurement quoted are not US ones.

Dusty. xxx

 

[Koothie]

Hello! Yes, we live in the US. I don't know why CRP range is the way it is. My daughter is 17.
We got the Sed rate back this morning and she is now at 28, three weeks ago she was 24. Her CRP is 30. Three weeks ago is was 32. Her Celiac panel is negative. She has iron deficiency anemia. Moderate to severe pain (6-7 on pain scale) Pain is always around the belly button. Taking Levsin.
My daughter had the MR Enterography this afternoon. She oral and IV contrast. She said that after 10 minutes of taking some pictures, the MRI tech said for her to rest. They had to get the doctor. I'm assuming the radiologist. Then, after a few minutes, they took pics again. The IV contrast was done, she said, about 10 minutes before she was finished with the whole study. The tech then asked my daughter when her last colonoscopy was. My daughter said July 17th.
Tech said doctor should have the report in about 1 or 2 days.
Hopefully we will found out something soon. I have had Crohn's since 1991. I would assume there is inflammation somewhere because of the SEd rate and CRP. I guess those can be nonspecific. I should probably look up what part of the small intestine is near the belly button. My disease has always manifested in the ileum. Thank you all for your advice and hearing me out!!!

 

[Koothie]

Her platelets are 268

 

[Mr chicken]

Hope the doc gets the report back soon
So you can get answers
Waiting is never easy
Doc is hard but at least you know what your dealing with and can make a plan

 

[Koothie]

I shouldn't read too much into this... Not sure why radiologist was called in during the middle of the MRE. When the tech asked when my daughter's last colonoscopy was, I figure he wants to compare the MRE with the recent colonoscopy on the 17th?
Thanks again to hearing me out!

 

[Mr chicken]

Fwiw pre dx
The radiologist was called in for Ds uppergi with sbft
Since the barium never reached the ti or couldn't be visualized
The radiologist told us the only thing he was certain of was that Ds didn't have crohns
Since the ti would have light up
- yep he was really wrong on that one

That said any scans Ds has ever had including ultrasounds etc
The radiologist always looks at the images to determine if they have enough of xyz and of they need more etc..

 

[Koothie]

So the radiologist is determining if there is enough contrast present in order to see the pictures? That is why he/she is called in?

 

[DanceMom]

In our case the radiologist was called in to verify that the images obtained were adequate. I think that is pretty standard. I hope you get some definitive answers soon.

 

[Koothie]

Thank you all for your advice!

 

[DustyKat]

Aside from the bloods two things jump out at me as being associated with IBD: Pain around or just below the navel and pain after eating.

I hope you soon have solid answers hun. :ghug:

Dusty. xxx

 

[Koothie]

Hi!
Agree Dusty... The pain around the belly button and pain after eating sends me the red flag. I have had Crohn's since 1991. As the doctor said, her Sed rate and CRP are also elevated.

I know I mentioned this earlier, but my daughter mentioned that they called in the radiologist after about 10 minutes of starting the scan. Maybe it was to see if the images are clear enough. Then, right before the scan was over, they asked when was the last colonoscopy. My daughter said it was July 17th.

Hopefully we will hear something today? She had the MRE done yesterday. The tech said, usually about 1 or 2 days. I would hope that if something was found I would be contacted today. We'll see! Thank you again everyone for listening!

 

[Koothie]

Can iron deficiency anemia also be a indication of IBD, because she has this too!

 

[Mr chicken]

Yes but it can be from other things as well

 

[Clash]

My son has had 2 MRE and both times about 1/3 to 1/2 way the radiologist was called in to go over imaging before they proceeded with the glucagon shot or what ever the nasty shot they give is.

What is that nasty shot Mr chicken? I always forget.

 

[awmom]

Hi Koothie.....all the symptoms/low labs you mentioned were the same with my son. Very anemic, High inflammatory markers and pain around the bellybutton area, especially shortly after eating. I hope you get answers very soon and she starts feeling better.

 

[crohnsinct]

Oh man how I loathe waiting! Sending lots of patient vibes your way.

While IBD would be at the top of my list of things to rule out or in, you can't rule out a host of others issues until you get a definitive answer from the GI. I could understand starting with a GI but have you thought about taking her to a gynecologist. There are many gyn issues that could raise blood inflammation markers and cause pain in the belly button area. Maybe consider that if the GI can't find the cause. Being the expert at impatience that I am, I would go ahead and call and make that appointment now because of the long wait times and then if GI finds the answer just cancel.

Has she done a fecal calprotectin test. They are pretty reliable with regard to organic vs. functional issues.

Try not to read anything into the docs and what they do or say. I have played that game way too many times and it is pointless because I am usually wrong. I wish they knew what went through our minds so they can say, "hi there I am just here to check to make sure we are getting good images" etc.

Do you have a follow up appointment with the doc? Could be they are waiting to discuss results until you are in the office.

FWIW - my youngest daughter with Crohn's in her TI had pain where your daughter has it.

 

[Koothie]

My daughter had the MRE yesterday, as I mentioned in the previous posts. This afternoon, the doctor called around two o'clock. He said the MRE show inflammation in the Jejunum and that she has Crohn's disease. That also explains the iron deficiency anemia. Down the road, I should have her B12 checked.
The doctor wants an enteroscopy done. He wants to have a biopsy of the inflamed area, to check the severity. He is going to consult with the adult GI doctors. He said the enteroscopy has a longer tube, so it will get deeper into the small intestine.
Doc may want to do a pill cam. but wants to also consult with the adult GI doctors about this. He is not sure if the pill cam can be done, because if she has inflammation or a small blockage, the pill cam could get stuck. He said that there is also a dissoluble pill cam, that may be an option. But right now he wants the enteroscopy done.
Doctor is also changing her medication. She was on Levsin, but it wears off too soon. He is putting her on an extended release, so hopefully she will have a longer time of relief.
Thank you all for your advice and guidance!
Kathryn

 

[Mr chicken]

It's not a normal endoscopy
That would be a double balloon endoscopy where they expand the intestine then push through or a push and pull endoscopy which carries a lot of risks .
Way more than a normal upper egd . Our Gi said it was not something worth the risk in his opinion .
If she has crohns then why stay on levsin or other antispasmodic - that doesn't treat crohns at all. Why not Pred and a maintencd med like mtx or biologics .
I would get a second opinion ASAP .
Kids are dx with small vowel crohns in jejeum all the time without such a risky scope and do not stay on Ibs meds .
Sorry to hear about the dx

 

[Maya142]

I would also get a second opinion. Or at least ask about a maintenance medication and steroid. With high inflammatory markers and confirmed inflammation, I would assume they would start treatment ASAP.

With a pill cam, you can do a dummy pill cam which dissolves if it gets stuck. If that passes through without any problems, then most doctors think it's safe to do the actual pillcam. My daughter did this with no issues - quite an easy test.

 

[Koothie]

Thank you all for your insights and advice! I do greatly appreciate it! I'm thinking he wants to see how severe the inflammation is before starting medication.

 

[Mr chicken]

The more would have measurements on the report to tell the Gi the lengthen and thickness
That is used to determine the severity quite honestly .

 

[Mr chicken]

Pred still could be started

 

[Maya142]

There are a few parents on here with kids who have a lot of small bowel involvement. I'm sure they will chime in shortly.

Generally with kids (I know she is 17 but that's still a kid!) they start treatment quite quickly since the disease can spread and be more severe. Most kids need immunomodulators (6MP or MTX for example) or biologics (Remicade, Humira). Steroids or Exclusive Enteral Nutrition are used to induce remission. She can try drinking Ensure or Boost to give her gut a break - might help with pain while she's waiting.

If you are interested in a second opinion, you should probably start the process soon because it can take months to get an appt.

I remember how overwhelming the first few months were. The thing to remember is that it will get better.

 

[crohnsinct]

So sorry to hear this. :ghug:

I agree that a med should be started asap. Severity doesn't much matter with the attack now approach. Pretty much all kids start with a steroid or Exclusive Enteral Nutrition to knock out the inflammation right away because all the long term maintenance meds take a while to build to therapeutic levels. So GI could start attacking the inflammation now while he decides on the maintenance med. Heck, he could even decide on an immunomodulator and get that started and then if he changes his mind and decides on biologic you could easily stop the immonumodulator. Although in all honestly most kids are using immunomodulators now with biologics as it extends the length of time the biologics work and fights antibodies so why not get it started asap because like I said it takes time to build.

Sorry...I know a lot is being thrown your way and you are having to process info and make tough decisions. Please know that we are just trying to give you our BTDT advice.

But for tonight I order wine! :drink: Big girl panties on tomorrow and you start fighting the good fight. :ghug:

 

[Catherine]

Sorry you have joined the club.

My daughter was similar age at dx. 16. She has small bowel crohn's disease.

We had inflammation visible on a ultrasound for 6 months prior to dx. This went untreated due to a dx of IBS. She also has a history of anemia. She become very ill, very quickly.

Do you have an appointment to discuss the results? Push for a treatment plan now.

 

[awmom]

Gosh Koothie, I am so sorry to hear about the diagnosis. I'm glad your GI is asking for a second opinion himself regarding the next step, and am wondering how much experience he has had with CD. But you will be armed with so much info gathered from this forum and you will be able to ask many well informed questions.

I hope they get her a plan for her soon. And ask for explanations about the plan...why they are choosing a given treatment and how they will check if things are working. I didn't know enough to ask and we continued on a non effective treatment for too long.
It may be a little bit of a rollercoaster at first because you may be given options and you will have to make some difficult decisions, but hang in there, and vent and ask as much as you need. Please keep us posted...sending warm thoughts.

 

[DustyKat]

:ghug::ghug::ghug:

I’m so sorry to hear of the diagnosis Koothie but glad you have answers for your lass.

I can see why the GI is holding off with medication. If the inflammation is in an area that can be reached by a scope then a biopsy will be the gold standard for a diagnosis and will beat imaging hands down for diagnostic and prognostic accuracy. Any form of medication designed to treat that inflammation may jeopardise clear and concise results.

Did the doc say how soon he will consult with his colleagues and get to you?

Dusty. xxx

 

[Koothie]

Hello Friends,
Here is my daughter's MRE report, Pediatric GI called early this morning.
EXAM
MR ENTEROGRAPHY

HISTORY
abd pain, + FH Crohn's, elevated sed rate and CRP, negative colonoscopy

COMPARISON
No comparisons

TECHNIQUE
MR Enterography with intravenous gadolinium and Volumen oral contrast.

CONTRAST UTILIZATION:

Medication name: MAGNEVIST
Amount Prepared: 10 milliliter
Amount Used: 10 milliliter
Amount Wasted: 0 milliliter
Route of Administration: INTRAVENOUS

FINDINGS
QUALITY OF ORAL CONTRAST INGESTION:
There is superb distension of the entire small bowel with oral contrast.

SMALL BOWEL:
There is long continuous segment of wall thickening of the jejunum with hyper enhancement ulceration, pseudo
sacculation. There sub mucosal edema. There appears to be a fibro fatty proliferation in the region.

LARGE BOWEL:
Normal.

MESENTERY:
There is a fibro fatty proliferation surrounding the jejunum.

PENETRATING DISEASE:
Abscesses: None.
Fistulas: None.

IMPRESSION
Findings suspicious for active jejunal Crohn's disease. Terminal ileum is normal.

My daughter's pediatric GI wants to have the enteroscopy done. He wants a biospy of the area.
I asked if he would be doing it and he said Dr. David Diehl from Geisinger, Danville Pa would be performing this procedure. My doc said that Dr. Diehl is one of the best invasive GI physicians in the country. We are trying to get this set up ASAP.
Today she has been feeling progressively worse. pain is about 7-8, her temp is 99.5 She has hardly eaten anything. Deciding whether to take her to the ER. Thank you all for your patience and advice! I am grateful!

 

[Maya142]

Generally if the pain is out of control and you are debating about going to ER, you need to take her to the ER. At the very least the ER can give her some pain meds and fluids and make her more comfortable.

Have you considered a Children's Hospital in your area? I know it's a bit of a drive for you, but CHOP has a great program. The Children's Hospital in Pittsburgh also has a great GI dept. I would want to consult another ped. GI before doing such an invasive test.

That said, it seems like she won't be treated until you do the enteroscopy, so I would also understand wanting to get it done so your poor girl can get some relief.

Sending hugs!

 

[Mr chicken]

I would so push for a major university based pediatric hospital second opinion
ASAP
It's invasive for a reason
The top three are still chop
Children's of Pittsburgh and Boston children's
Even nationwide children's in Columbus or Cleveland clinic

If the small bowel perforated things can get ugly very fast
Did you ask for the mortality risk on the procedure ?
The actual number on pediatric case .
Danville is not a big metro area like Philadelphia or Pittsburgh in pa

 

[awmom]

What a difficult situation Koothie.....It's these decisions that keep us up at nite. More frustrating when the specialists are in other cities and it's difficult to get appointments. I hope that at this time she is feeling a little bit better so that you can weigh your options and ask more questions. Is she eating solids? Have you thought of putting her on a liquid diet to see if it makes her more comfortable for the time being?

Please keep us posted.....sending warm thoughts.

 

[crohnsinct]

I know with my younger daughter once she got the actual dx her pain seemed to get worse. I don't know if it actually did get worse or she finally allowed herself permission to complain because there was actually a reason for the pain. The previous three years no one took her seriously so she just sucked it up so to speak. However, this is all new to you both and if her pain is really that bad I would at the very least be calling the GI while they are in the office for some guidance.

Did the GI happen to say what he is looking for with the biopsies and how what he finds might change his approach to the situation? Did he share with you treatment options if A or B etc?