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Crohn's Disease Forum » Parents of Kids with IBD » 10y. old son newly diagnosed, sed rate high for months


 
05-24-2017, 09:57 PM   #1
Jelly loves Peanut butter
 
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10y. old son newly diagnosed, sed rate high for months

Hello, my son L was diagnosed at age 9 in Sept. 2016 with Crohn's. He had no symptoms prior when he suddenly developed diarrhea and pretty bad foot pain. My initial visit to the doctor was actually for his foot. It hurt so bad he would cry at night, as well it was very swollen. His X-ray was normal and so the doctor thought he might have strained it, although he had done nothing to injure it and it was not bruised(only had diarrhea 2 days at this point so I didn't even mention it). I returned the following week d/t worsening diarrhea and subsequent stool specimen showed c. dificil. After treating with flagyl for 2 weeks with no improvement, MD repeated stool test and added labs. Fecal calprotectin was 440, sed rate 66, CRP 16.0. Over the next few months L suffered with leg pain, diarrhea, weight loss, nausea,and abdominal pains. We were referred to a pediatric GI during this time and L was diagnosed with moderate Crohn's after EGD and colonoscopy in Sept. 2016. He was treated with prednisone taper over 2 months and started 6-MP(low dose until TPMT genotype was done). Currently he is on 6-MP 50mg alternating with 75mg daily. He has been doing quite well since December although still has leg pain(mostly foot but sometimes knee or hip) which MD called "arthralgias" related to to Crohn's. Sorry for the long story but my question is about his sed rate. It has been elevated since July (latest readings 58,48,35,47). CRP is ok (last few 1.20.0.90,0.80,1.00). I asked the pedi GI in February about this if maybe it was still up because of his leg pains and she said no,but it could take awhile to come down. Wondering if anyone else has had this happen and can give me a timeframe when it will return to normal? I worry every day about L and would very much appreciate any input.
05-25-2017, 04:31 AM   #2
my little penguin
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If he is having arthralgia he needs seen by a rheumatologist
Crohns has Spondyloarthapathy (arthritis) associated with
Kids with pain need to be followed by an rheumo to make sure they don't develop arthritis later with it
Ds started with leg pain and later developed JSpA

Sed rate does not take months to go to normal
A week or two maybe but not months
Can you get a second opinion at a large pediatric ibd center ?

Has your child tried een (exclusive enteral nutrition) formula only no food ?
The top three in the country are children's of Philadelphia
Boston children's
Cincinnati children's

Good luck
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05-25-2017, 07:49 AM   #3
my little penguin
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Are his 6-months levels therapeutic??
Ds ran into trouble with that when his levels got therapeutic
His liver enzymes went up
So after 8 months we stopped it
He wa dx at age 7
That was almost 7 years ago now
It does get better and easier with the right meds

He is on humira and mtx for Crohns and juvenile spondyloarthritis (JSpA)
05-25-2017, 02:05 PM   #4
Jelly loves Peanut butter
 
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Are his 6-months levels therapeutic??
Ds ran into trouble with that when his levels got therapeutic
His liver enzymes went up
So after 8 months we stopped it
He wa dx at age 7
That was almost 7 years ago now
It does get better and easier with the right meds

He is on humira and mtx for Crohns and juvenile spondyloarthritis (JSpA)
. His Levels are almost therapeutic. We just had an increase in dose so I will see at the next lab draw.
05-25-2017, 02:36 PM   #5
Jelly loves Peanut butter
 
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Thank you MLP for replying. We go to Children's Hospital in San Diego and it does have an IBD center but maybe I will ask to see a rheumatologist. L has not been on EEN but he was drinking 3-4 boost a day when he was diagnosed. Our next appt is in June so I'll ask again about the sed rate. Thank you again!
05-25-2017, 03:19 PM   #6
Maya142
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Hi and welcome.
I agree about seeing a rheumatologist. He could have arthritis which is often associated with Crohn's Disease - Spondyloarthritis. My younger daughter has both Crohn's and Spondyloarthritis and she started out with knee and foot pain.

If 6MP is working for your son, his ESR should not be high. Has he had a Fecal Calprotectin recently? If you just increased the dose to get to therapeutic levels then it may take a little longer.

If in a couple months his inflammatory markers are still high, then it's probably time to think about a change in treatment. Methotrexate or biologics are options as maintenance meds.

If he does have arthritis, then you may also have to change meds, but the first step is seeing a rheumatologist. A rheumatologist is the best person to ask about differentiating between arthritis (inflammation in the joint) or arthralgia (joint pain). A GI may not be able to pick up subtle signs of inflammation in the joints.

Good luck!!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
05-25-2017, 06:45 PM   #7
Jelly loves Peanut butter
 
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[QUOTE=Maya142;978374]Hi and welcome.
I agree about seeing a rheumatologist. He could have arthritis which is often associated with Crohn's Disease - Spondyloarthritis. My younger daughter has both Crohn's and Spondyloarthritis and she started out with knee and foot pain.

If 6MP is working for your son, his ESR should not be high. Has he had a Fecal Calprotectin recently? If you just increased the dose to get to therapeutic levels then it may take a little longer.

If in a couple months his inflammatory markers are still high, then it's probably time to think about a change in treatment. Methotrexate or biologics are options as maintenance meds.

If he does have arthritis, then you may also have to change meds, but the first step is seeing a rheumatologist. A rheumatologist is the best person to ask about differentiating between arthritis (inflammation in the joint) or arthralgia (joint pain). A GI may not be able to pick up subtle signs of inflammation in the joints.

Good luck!![/QUOTE
Fecal cal protection was 88 in feb. Thank you Maya142!
05-26-2017, 04:55 PM   #8
kimmidwife
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I agree with the others. His sed rate should not remain elevated for months. Either the 6MP is not working or something else is going on. Hope you get in with a rheumo quickly
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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.
05-26-2017, 05:35 PM   #9
Maya142
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If his FC is low, it is definitely possible that arthritis is increasing his Sed rate. Hope you can get in with a rheumatologist soon.
06-09-2017, 02:01 PM   #10
Jelly loves Peanut butter
 
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Just had labs again, CRP 1.10 and sed rate 66. I talked with my GI doc and she put in a referral for rheumatology so i will keep you posted. Thank you again for the advice.
06-09-2017, 02:36 PM   #11
Maya142
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Glad he is seeing a rheumatologist!! Let us know how it goes.

I also wanted to add, in kids, negative x-rays don't necessarily mean no arthritis. X-rays only show damage, not inflammation. It takes a long time for damage to show up on x-rays - years, not months - so early in the disease, you would expect negative x-rays.

An MRI is more accurate because it will show inflammation and damage.
06-22-2017, 01:24 PM   #12
Jelly loves Peanut butter
 
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We are still waiting to see the rheumatologist but my GI doc put in orders for MRI sacral, urinalysis, HLA-B27, rheumatoid factor (she contacted rheumo and this was their recommendation). I understand what the blood tests are looking for but why the urinalysis and MRI? His aches are always feet, ankles, knees, hips, and lately elbows; not all at the same time, tends to be sporadic. His back has never bothered him. Also if any of these do show something then what treatment would I expect? He is on 6-MP and it is controlling his abdominal symptoms so well, I would not want to chance replacing that with something else.
06-22-2017, 01:39 PM   #13
Maya142
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So sacroiliitis is VERY common in spondyloarthritis. That is why the MRI. It is pretty standard to do an MRI with juvenile spondyloarthritis, but generally they would examine the child first and see if he/she has back complaints - morning stiffness, pain, limited mobility. That said, it is possible to have sacroiliitis without back complaints, especially in kids and it is good to check.

It can only be treated by a biologic, so if he does have it, he'd have to switch to one. It is very important to treat spondyloarthritis, because it can cause a lot of damage. My husband and my two daughters have it - both girls have been on biologics for years. However, they both have damaged in their SI joints and hips - something we may have been able to prevent if we had started biologics earlier.

My husband has NEVER been on biologics (they weren't available when he was diagnosed) and he has had 5 hip replacements, and has a damaged spine and ankle.

So the goal is to treat the inflammation, just like with IBD, and prevent damage.

The other joints that are involved are often the feet, ankles, knees and hips and even elbows - so it makes a lot of sense that they are testing for all this. HLA B27 is a gene associated with JSpA (juvenile spondyloarthritis), though you can be negative and have JSpA.

I'm not sure why the urinalysis is necessary. RF factor is common in a different type of arthritis - polyarticular juvenile idiopathic arthritis, which is less likely to be associated with IBD. In JSpA, RF will be negative or low.

The rheumatologist can examine his joints and determine if there is inflammation. That is hard to do with the SI joints since they are so deep in (but easy to do with knees, feet, ankles etc) which is another reason for the MRI.

My girls had MRIs soon after they saw their pediatric rheumatologist the very time. It is very standard.

Hang in there!!
07-05-2017, 12:07 AM   #14
Jelly loves Peanut butter
 
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So HLA B27 and rheumatoid factor were both negative. Also latest sed rates 48 and CRP 1.50, fecal calprotectin 25. Had a rheumatology consult and he wants to wait and see what the MRI sacral shows which we finally got insurance approval for so I will call this week for that. Of course I explained the history of everything that has been going on but my son was feeling good that day and showed no signs of inflammation during the examination. We did talk about possibly changing his 6mp to methotrexate if the MRI showed inflammation. So for now we will wait for the MRI.
07-05-2017, 12:14 AM   #15
Maya142
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So technically, MTX does not work well for SI joint inflammation or spine inflammation. It works very well for peripheral arthritis - ankles, knees, fingers, elbows - but not axial (spinal) arthritis (including the SI joints).

Rheumatologists typically do not use MTX if the SI joints are involved. We went straight from NSAIDs (this was prior to my daughter's Crohn's dx) to biologics. Our pediatric rheumatologist (and the second opinion rheum we saw) said that MTX would not have helped because the SI joint inflammation was the major problem.

That said, some pediatric rheumatologists do still try it, but it has become much more common to go straight to a biologic if there is sacroiliitis. There is LOTS of research to support going to biologics if there is SI joint inflammation. We went straight to Humira for both girls.

It does sound like there is inflammation somewhere, so hang in there. Getting an arthritis diagnosis can be tough and can take a while.

Hope the MRI goes well and you have some results soon.
07-05-2017, 12:35 AM   #16
Jelly loves Peanut butter
 
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Thanks Maya! I will let you know results for the MRI soon.
07-07-2017, 05:45 PM   #17
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My rheumatologist asked the radiologist to look at my son's MRE abdomen from October 2016 to see if it included the SI joints and it did. The revised report was "subtle patchy multifocal areas of signal abnormality centered along the sacroiliac joints bilaterally, predominantly along the sacral side and involving the upper portion of the joints, findings likely reflect sacroiliac arthropathy." He still wants to have another MRI that is scheduled for July 26 and said depending on that may want to switch him to humira.

I'm not sure what to think of all this. Does he really need another MRI now that the October MRI had these findings? Is there any other options for medications where we can keep the 6MP and add something if necessary?

If he does have to switch to humira then how often is that given? I just feel so stressed with worry at the thought of the Crohn's symptoms returning if we stop 6MP. Any answers or advice are appreciated!
07-07-2017, 06:02 PM   #18
Maya142
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So it does sound like active inflammation in his SI joints. 6MP will not help with that but a biologic like Remicade or Humira will. Humira is given once every two weeks. For IBD, there is a loading dose - 4 shots on day 0, 2 shots on day 15 and 1 shot every two weeks (for maintenance).

Your best bet to get the joint pain under control is a biologic. He can stay on 6MP while on a biologic or they could stop it. Biologics are typically MORE effective than 6MP, so his Crohn's should stay under control. They may also keep him on 6MP till the biologic kicks in and then slowly take him off it.

As for the MRI - it will give you more accurate info, since it will be targeted at the SI joints. It won't hurt and it might help. I know it's a pain - my kiddo has had about 20.

I would expect a juvenile spondyloarthritis or enthesitis related arthritis diagnosis as soon as you have the results of the MRI. Sorry - I know it's tough to hear your kiddo has one more issue but the good news is that it can be treated.

Both my girls did well on Humira- my older daughter is still on it.
07-07-2017, 06:17 PM   #19
Jelly loves Peanut butter
 
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Thank you Maya! You always have great information and are so knowledgable! My husband has asked me if you are a doctor When my son first started having problems last July, I found this forum and have gained so much knowledge being able to read through all the threads and everyone elses experiences. I never knew how much I didn't know. Thanks again and I will wait for the MRI.
07-07-2017, 06:24 PM   #20
Maya142
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Nope, just a mom. Both my daughters were diagnosed with JSpA as teenagers and my husband has AS (both girls have now progressed to AS).

Please feel free to ask any questions or message me any time.

The Humira shots do hurt - they burn. That was the worst part of Humira for my girls (they had no side effects). It's the actual medication that burns going in and it hurts enough that AbbVie is actually changing the formulation of Humira to take out the burning preservative (citric acid). The new formulation is available in Europe but not the US yet. It's supposed to be out in the US this summer so we are keeping our fingers crossed.

We iced before the injections and did them while watching TV so my girls were distracted. We also iced after them and the girls got a reward (usually dessert - something with chocolate ) after the shot. We also used Buzzy which helps a little but not a lot.
07-07-2017, 06:25 PM   #21
Maya142
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I wanted to add - some pediatric rheumatologists will prescribe lidocaine to add to the shot. That helps a lot with the burning. We haven't tried it but I have heard from other JIA parents that it works well.

I'll tag my little penguin since her son also has JSpA and is on Humira. She has used Lidocaine with Humira for years.
07-07-2017, 06:36 PM   #22
Jelly loves Peanut butter
 
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Thank You
07-07-2017, 06:45 PM   #23
Maya142
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I also wanted to add - the abnormal signal means inflammation. It doesn't mean there is permanent damage yet (the report would show erosions if there was). That's really good - the goal is to get this under control quickly, like you would Crohn's.

For pain relief - ice and heat can help a lot. One of my daughters prefers ice, the other heat. It doesn't matter which you use (or both) - whatever works for your kiddo.

For foot pain, soaking his feet in a bucket of warm water should help. You can also get a "foot spa" on Amazon. They're not too expensive. We got one for my younger daughter and she uses it ALL the time - it's honestly worth its weight in gold.

Snuggables has stuffed animals that can be heated and put on a sore joint: http://www.snuggables.net/plush-stuffed-animals

My daughters are young adults now, but still love them!

Voltaren gel is also a good option for pain relief - it's an NSAID but since it's topical not much is absorbed and it shouldn't bother his gut. The rheumatologist can prescribe it.

Good luck!! Keep us updated!
07-07-2017, 07:11 PM   #24
my little penguin
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Hugs
Ds has JSpA as well
He is on humira and mtx for Crohns and JSpA
We add lidocaine to the humira syringe
This lowers the amount the medicine burns

The doc has us draw up the lidocaine separately and mix it in the humira syringe
We use dum dum lollipops
Humming
Difficult questions to answer
Movies
Repeating a happy image (such as puppies)
Counting
After 5years Ds doesn't really mind the humira shots much at all

Glad your Ds is getting an MRI
Good luck



Second the foot spa
We got a larger one from Brookstone since Ds is 13 and the odds of having larger feet are pretty good
He using it multiple times a week and sometimes multiple times a day

We make sure he can swim a lot in warm water
And use thermabath (hot paraffin wax ) for ds hands
07-08-2017, 07:47 AM   #25
CarolinAlaska
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I second that Humira should help the IBD and his joint issues. Don't worry about that!
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*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
07-08-2017, 06:54 PM   #26
Farmwife
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Another arthritis kiddo here!

You've been given great advice but i wanted to add that biologics have done wonders for my kid.
She was dx with over 20+ joints involved at the age of 4.
She was put on a biologics (remicade now)
4 years later and still no permanent damage.
I hate that she needs these meds but so happy that it works for her.

Hugs
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
07-09-2017, 05:20 AM   #27
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I was diagnosed with Crohn's at 9 years old. I also had arthritis. My parents had no idea what to do emotionally while going through all of this. My parents read all the literature they could find, went to support groups for parents of children with Crohn's--and that was in 1995. I remember seeing how hard it was on my parents with me being so sick as a child and into my teens. My advise to you is to take care of yourself and seek support for parents who are in your situation. It greatly benefited my parents and helped them understand everything I was going through.
07-19-2017, 12:23 AM   #28
Jelly loves Peanut butter
 
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My son started doing this head nodding thing for the past few days. At first I thought he was doing it on purpose but now it seems like he just does it involuntarily and I don't even think he knows he's doing it. He randomly jerks his head down as if he is nodding, sometimes once and sometimes a few in a row. I videod him doing it and am sending it to my doctor tonight and plan to call in the morning. He has no other neurological signs. Can this be some sort of vitamin deficiency or electrolyte imbalance ? He's been doing great as far as his GI system goes so he really shouldn't have a vitamin or electrolyte problem. Has anyone else experienced this?
07-19-2017, 12:31 AM   #29
Maya142
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We haven't had this problem. Remind me, what meds is he on? Just 6MP? Or has he started Humira?

Glad you are telling his doctor - I'd let both his GI and his pediatrician know. You might need a referral to a neurologist.

Good luck!!
07-19-2017, 12:36 AM   #30
Jelly loves Peanut butter
 
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Just 6MP and vitamin D.
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