What lab work is your GI doctor obtaining to determine if treatment is effective?

My daughter (age 11) was dx in March 2013 with Crohn's disease. Her only symptoms before dx included: poor weight gain, poor growth & anemia. She was started on remicade the week she was diagnosed. Because she does not have any of the "typical" symptoms - the doctors are only using weight gain & inflammation markers (c-reactive protein, SED, CBC & fecal calprotectin) to determine if the treatment is working. Her inflammation markers are now normal so they are reducing the dose of remicade to 5mg per kg and the treatment to every other month (she was on monthly 7.5mg per kg dose). I was wondering what blood work /labs other doctors are obtaining to determine correct treatment dose & frequency of remicade infusion for other people on remicade? My daughter feels the same as before the treatment (as she has not felt symptoms of the damage that occurred to her terminal ileum). She looks physically better to me now due to her weight gain & resolution of anemia (now she has color to her skin).
She does not take othe medication other than a daily vitamin.

Those are pretty standard blood tests to try to keep track of the disease progression. Other than that its important to see if she is absorbing nutrients like iron, b12, and vit d3.

Thanks for the reply. I do not have any idea how to really "know" that my daughter is improving besides her weight gain & anemia improving. The GI doctor just spaced out her remicade from 4 weeks to 8 weeks and reduced the dose to 5mg per kg for her next treatment. It was exciting, but this weekend I just noticed she has a fungal infection in multiple places. So not sure if that will change what they want to do about treatment.

The most effective way is through comparing colonoscopy reports and imaging studies to show improvement.

Hello. I agree with nogutsnoglory about all the tests. Colonoscopy will be the better way if she does not have typical symptoms. but I would think Doctor will wait a few months since she is gaining weight and anemia is improving. My kids are like your kid. I hope the infection gets cured soon.

Seems like she is getting the right tests. I would definitely have vitamin/mineral panel testing done every so often (as someone else suggested), as we are more likely to have deficiencies due to poor absorption/restrictive food intake.

It's been some time since I've been on the forums. My daughter is doing well. No anemia & great weight gain (I'm sure to the fact she is able to absorb nutrients now). She has her Remicade infusions every 6 weeks. She has gained 38 pounds and looks great. We spaced out the remicade because her AST/ALT were increasing. The doctors (after 1.5 yrs on remicade) only want to do the colonoscopy if she becomes symptomatic - weird as she never has had outward symptoms. Thanks for all the suggestions. We are still drawing the same labs - I figured that when her anemia improved so would any other nutrient deficiency.

My daughter has Crohn's Disease also without the traditional symptoms.

She main symptoms were anemia, periods of severe pain and weightloss. She also has small bowel disease

We believe she is currently out of remission. Her calprotectin has increased from 82 to 380 in just over 3 months.

Sorry to hear that Catherine. My daughter's name is also Sarah. She was dx age 11.5; March 2013. She will 13 soon. Her first calprotectin was 1175. After initiation of remicade it has decreased to 143. We haven't continued monitoring that test because of insurance coverage issues. It seems like the c reactive protein & the calprotectin were the only two values/tests letting us "see" inflammation. I'm using the CBC as a late monitor of absorption.
Her current labs (every 6 weeks drawn with the remicade infusion) are: CBC, CMP, C reactive protein & SED

Although faecal calprotectin is not covered for us. The test is only costing us $40 each time it is run.

$245 for us. I think it still might be worth the cost annually. Right now we are putting the focus on paying for her remicade & growth hormone. We are sick with worry over my daughter's future insurance possibilities & cost - when she's too old to be covered under our insurance plan.

Now our kids can get coverage until they are 26. Have you try to apply for the remi star program? It covers what the insurance does not cover for the medicine.

We haven't yet, but have heard about the program. It's definitely something to look into as we have a high annual fee up-front each year.

Remi start is for the first tweleve months of infusions then there is a secondary program after that to help with the insurance cost difference .
Glad to hear she is growing and gaining again .
As far as labs DS has
CBC
Alt/ast
Fe studies
Vitamin d studies
Cmp
Kidney function( creatine bun)
Fecal cal every 6 months .
Sed /crp

Blood work is typically normal but you can trend you Dd numbers over time to correlate her normal with poor appetite weight etc...
For DS 10 is normal sed rate anything near 20 and something is going on inflammation wise.

Good luck

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