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Crohn's Disease Forum » Parents of Kids with IBD » Another year older and a new Dx.


 
08-23-2017, 09:55 PM   #91
Farmwife
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Sorry mlp.
Still trying to learn about all the ins and outs of JIA.
Thanks for the info.

So if the xrays show damage in her neck and her rheumatologist deems it arthritis, than its called JSpA? I think she already has that on one of her dx pages.
Good grief I can't keep up.
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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
08-23-2017, 10:54 PM   #92
Maya142
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JAS means that there is damage in the sacroiliac joints on x-rays. That is what you have to have to have an official AS diagnosis, whether adult or child.

Damage in her cervical spine is more likely to be polyarticular JIA than JSpA. In JSpA, it tends to start at the bottom of the spine and work its way up.

JAS is very rare, especially in girls. It takes 7-10 years for x-ray damage to show up in most people, which is why adults are usually diagnosed with AS, very rarely kids. If it is diagnosed in kids, it's diagnosed in teens.

The arthritis in her neck - it depends. Since she has EDS, it's possible it could even be wear and tear. That is unfortunately pretty common with EDS, even at very young ages. Osteoarthritis is known as "old person's arthritis" but actually most NORMAL people have some by age 30-40. It's not uncommon to have some in the spine in the 20s, especially kids who did sports.

In someone with EDS, it could happen much faster. We have met kids with severe EDS who have a lot of spinal damage from it - especially in their neck.

If it's inflammatory, it could be AS, but she is very, very young to have that kind of damage.

Grace probably does have JSpA - another name for it is IBD associated arthritis or enthesitis related arthritis. It is one of the subtypes of JIA. Polyarticular JIA is a diffferent subtype.

JSpA kids tend to be HLA B27+ and they have a lot of enthesitis (inflammation where tendon/ligament meets the bone). Typically, lower limb joints are involved - knees, ankles, hips, but any joint can be involved including jaw or fingers. SI joint involvement is common and needs to be treated aggressively. It is more common in boys.

Polyarticular JIA is usually found in girls - sometimes ANA+ or RF+, sometimes not. It often affects the hands, the elbows, knees etc.

JAS is a further subtype of JSpA, and it's almost always seen in teenagers - late teens, usually. Also more often seen in boys than girls.

My daughters initially only had sacroiliitis show up on MRI - first inflammation, then erosions, sclerosis and finally there is some ankylosis (fusion). This is a slooooow process. M was diagnosed at 12 and had damage on x-rays at 16. That is very rare and most rheumatologists comment on how quickly she progressed. It's not unheard of, but now with biologics, it doesn't usually happen this fast.

M's AS is technically juvenile AS since she was 16 at the time.

S was diagnosed at 14 and by 19 she had damage on her x-rays. So she is adult AS. Her disease is thankfully not as bad as M's.

Generally it takes a long time for kids to progress from JSpA to AS, especially now that biologics exist. And some kids never progress - that is the goal, to prevent progression.

This is a long way of saying, you need to ask your rheumatologist what subtype she has. And you should ask what kind of damage she has in her neck and what it's from. AS damage is very specific (syndesmophytes) and I'd be very surprised to see it in a kid under 10 in the neck.

Knees, hips, ankles - yes, those are often damaged - you will see erosions, narrowing of joint space, cartilage wear. You will also see thickened and scarred tendons very often, since JSpA kids have a lot of enthesitis.

But spinal involvement, especially the cervical spine, usually comes later.
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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
08-23-2017, 10:57 PM   #93
Maya142
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I wanted to add - you had mentioned chiari malformation earlier - there can be associated neck issues with that.

https://www.ninds.nih.gov/Disorders/...ion-Fact-Sheet

We know one teenager with EDS who had to have surgery for that.

Generally you need an MRI or CT to see it, but there can be bony abnormalities associated with it.
08-24-2017, 02:39 PM   #94
Farmwife
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Thanks Maya.

You and mlp should write medical papers for parents. Lol

Ironically I'm waiting to get Grace's neck xrays right now.
The list on her paper says......

JIA (juvenile idiopathic arthritis) enthesitis related arthritis (HCC)
And
Other inflammatory spondylopathies
And
EDS (Ehlers-Danlos Syndrome)
And
About 10 other dx's.

So I guess they have their bases covered.
08-24-2017, 02:46 PM   #95
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That's essentially saying the same thing 3 times .

It's saying she has JIA. The subtype of JIA she has is ERA or JSpA. So she does have the same kind of arthritis as my girls and MLP's kiddo.

Enthesisits related arthritis (ERA) is the same as spondyloarthropathy (which is the same as juvenile spondyloarthropathy or juvenile spondyloarthritis).

JIA is the bigger umbrella term that includes ERA or JSpA. ERA is the newer term, JSpA is the older term.

My kiddo has juvenile spondyloarthropathy as well as Ankylosing Spondylitis as well as JIA on her list of diagnoses .
08-24-2017, 08:38 PM   #96
Maya142
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Fw, I just happened to see this article about cervical spine arthritis - have they done an MRI on Grace?

https://ped-rheum.biomedcentral.com/...969-017-0173-1

Abstract

Backgrounds
The purpose of the study was to evaluate the clinical and magnetic resonance imaging (MRI) outcome of cervical spine arthritis in children with juvenile idiopathic arthritis (JIA), who received anti-TNFα early in the course of cervical spine arthritis.

Methods
Medical charts and imaging of JIA patients with cervical spine involvement were reviewed in this retrospective study. Data, including age at disease onset, JIA type, disease activity, treatment and clinical outcome were collected. Initial and followup MRI examinations of cervical spine were performed according to the hospital protocol to evaluate the presence of inflammation and potential chronic/late changes.

Results
Fifteen JIA patients with MRI proved cervical spine inflammation (11 girls, 4 boys, median age 6.3y) were included in the study: 9 had polyarthritis, 3 extended oligoarthritis, 2 persistent oligoarthritis and 1 juvenile psoriatic arthritis. All children were initially treated with high-dose steroids and methotrexate. In addition, 11 patients were treated with anti-TNFα drug within 3 months, and 3 patients within 7 months of cervical spine involvement confirmed by MRI. Mean observation time was 2.9y, mean duration of anti-TNFα treatment was 2.2y. Last MRI showed no active inflammation in 12/15 children, allowing to stop biological treatment in 3 patients, and in 3/15 significant reduction of inflammation. Mild chronic changes were found on MRI in 3 children.

Conclusions
Early treatment with anti-TNFα drugs resulted in significantly reduced inflammation or complete remission of cervical spine arthritis proved by MRI, and prevented the development of serious chronic/late changes. Repeated MRI examinations are suggested in the follow-up of JIA patients with cervical spine arthritis.
Cervical spine arthritis is a well-recognized complication of juvenile idiopathic arthritis (JIA), usually presenting in patients with systemic or polyarticular forms of the disease [1]. More commonly, the upper cervical spine is affected because the atlanto-occipital and the atlanto-axial joints are synovial and are thus primary targets for rheumatic inflammation [2]. Early detection of cervical involvement is essential for identification of children that require more aggressive treatment including early introduction of biologic therapy. Untreated chronic inflammation of the cervical joints can lead to morphological changes and functional impairment, which can be even life-threatening due to instability and potential risk of spinal cord injury.

Clinical signs and symptoms of cervical spine arthritis may include neck pain, stiffness, torticollis, limited range of motion (LROM), headache, facial and ear pain, and signs of cervical myelopathy. Absence of clinical symptoms does not exclude subclinical inflammation and imaging abnormalities of cervical spine [3].

Imaging modalities used in assessment of cervical spine arthritis include radiography, computer tomography and magnetic resonance imaging (MRI) [4, 5, 6]. Radiography has been most evaluated imaging modality for assessment of cervical spine lesions and is particularly useful for evaluation of malalignment, functional impairment, morphological changes of bones, and vertebral body growth disturbances [3, 7, 8, 9]. In general, MRI is the method of choice in evaluation of cervical spine arthritis and is most useful in detecting synovitis with hypertrophic, enhanced synovia and pannus formation, joint effusion, erosions, bone marrow edema and possible neural structure compressions [10, 11]. The diagnostic accuracy and predictive value of conventional MRI in JIA patients with axial joint involvement have been poorly investigated [12]. The role of MRI in detecting early changes in cervical spine in JIA was first evaluated in a Turkish study showing higher sensitivity of MRI compared to radiography for detection of erosions in children [13]. More recently, a German study evaluating MR changes of cervical spine arthritis at diagnosis and response to treatment in 13 patients with JIA was published [14]. It was concluded that close MRI monitoring of these patients appears to be sensitive tool for early diagnosis and may help to detect further disease progression and complications.
It could explain her headaches...
08-25-2017, 12:15 AM   #97
Farmwife
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Xrays first because insurance makes us and then onto mri.
08-27-2017, 06:02 PM   #98
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Really hope that the new infusion schedule helps!

I home-schooled my oldest daughter in 7th grade, after she was first diagnosed. I had never even considered home-schooling prior to that, but my daughter and I actually enjoyed it. She wanted to go back to school after that year, but I like knowing that it's something we could go back to if we ever needed to.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
08-29-2017, 07:27 PM   #99
Farmwife
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Good news, no visible damage on the xray in her neck.

Now onto a mri for her.
Still daily headaches. Her medication doesn't seem to help much.

I've ordered the school stuff and Im more excited than the kids. Lol
Grace just want to get a laptop.
I don't think she understands that she will be using it for school only.

We also joined the homeschooling group in the area.
I'm hoping we can do a field trip or two.
08-29-2017, 07:31 PM   #100
Maya142
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Glad the x-ray was negative!! That's great news!

What is the MRI for - to rule out arthritis in her neck or chiari malformation? Hope it goes well and you can figure out how to help her headaches.

Another possibility on headaches - have they examined her jaw or done a jaw MRI? Jaw pain/arthritis (from the temporomandibular joint/TMJ) often causes headaches. It is VERY common in JIA and doctors often miss it.

You would need an MRI to rule it out.

Some kids have TMJ arthritis with lots of symptoms, others have no symptoms at all.
08-30-2017, 05:05 PM   #101
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I had tmj.
I ended up having the surgery to realign the jaw.
It's obvious I probably have eds but haven't gone to the doc yet.
That's a good point and will text her rheumatologist to ask what they think?

Mri is to rule out chiari or tethered cord.
08-30-2017, 05:18 PM   #102
Maya142
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So TMJ is just a short form for temporomandibular joint. Everyone has a TMJ (two actually).

You can have TMJ arthritis - which could be degenerative (like osteoarthritis) or inflammatory (like in JIA).

It's VERY common in JIA - some studies show that something like 80% of kids with JIA have inflammation in their temporomandibular joints. M's MRI showed active inflammation and erosions, so we did steroid injections. She had jaw pain, difficulty opening her mouth wide and ear pain (referred from her jaw). Headaches are also common.

Then there is TMJ dysfunction - essentially pain without arthritis in the joint. That is usually treated with a night guard and physical therapy, sometimes myofascial trigger point injections.

With EDS, it is likely there is osteoarthritis (wear and tear) but with JIA, it will be inflammatory. An MRI would tell you if Grace has TMJ arthritis and what kind (considering she has both EDS and JIA).

The kind of jaw arthritis associated with JIA can progress very quickly and can be hard to treat. We know several kids who have had to have jaw replacements, which is a major surgery.

M now needs surgery to clean out her temporomandibular joints. You would need to see an oral and maxillofacial surgeon for Grace if she does end up having TMJ arthritis. Your rheumatologist can refer you if necessary.
08-31-2017, 01:39 PM   #103
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Thanks Maya
They tried everything on my jaw before the big surgery but nothing helped until they realigned it. I had 8 minor surgeries before hand.
Now it's much better.
I hope it goes well for your girl.

I contacted her rheumatologist about this issue.
Waiting to hear back.
Since there are already going to do the mri on her neck and base of her skull, they can add the jaw I would think.
08-31-2017, 03:52 PM   #104
Maya142
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I would guess they can add it. Might be a very long MRI though, Grace will have to be in there and lie still for quite a while. I hope they have movie goggles for her!
08-31-2017, 10:07 PM   #105
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Wishing her the best with the MRI!
Glad you found a local homeschool group. We love our local groups.
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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.
09-01-2017, 02:16 PM   #106
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Rheumatologist approved the mri for the jaw also.
Maybe they've learned to just give me what I want and I'll go away.

Just kidding, her rheumatologist is amazing.


We're waiting for her pain doc to call back.
I want to stop her Topamax because it's not helping much with her headaches and her personality has changed. ...not for the better.
09-01-2017, 04:53 PM   #107
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Farmwife
Is herJIA under control ?
I ask because Ds will get daily headaches and migraines when any of his autoimmune diseases are flaring

We threw migraine meds at it but it doesn't stop them except for rescue meds (imitrex)

Once we got the flares under control the headaches stop

Has she seen a neurologist who specializes in pediatric migraines /headaches ?

They can help
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09-01-2017, 09:04 PM   #108
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Her jia has never controlled.
No neurologist yet. No did said shying yet about going to one
Her pain doc is the one dealing with the med side of things.
This is just do new for her and sudden.

Edit: Never type a message in the wee hours of the morning when your half awake. Lol

Last edited by Farmwife; 09-02-2017 at 09:09 AM.
09-01-2017, 09:10 PM   #109
my little penguin
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Pediatric Neuro is best to handle chronic headaches/migraines
They know the why
And which meds work best for chronic headache
09-01-2017, 09:11 PM   #110
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Does the rheumatologist have a plan B if Remicade every 2 weeks fails? I'm asking because if she's never been in remission so far, you may need to try a different kind of biologic.
09-02-2017, 09:07 AM   #111
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Their is a plan b but we've seen great progress with Remicade.
I believe she was almost in remission before the insurance withheld it for 3 months.

I'd assume a neuro is in her future.
Her Pain Doc is the head of a large pediatric rehabilitation center and is quite controlling and protective of Grace's care (he's the eds expert) but I don't believe he would hold back on sending Grace to a neuro.
But I'll ask when his nurse calls on Tuesday.
I have this feeling that it all hinges on the mri results.

I haven't been this nervous about a test in awhile.
09-02-2017, 10:50 AM   #112
Maya142
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Yes, I think treatment will completely change if she needs surgery for a chiari malformation or tethered cord .

If it's jaw inflammation, then upping Remicade might do it or you can do steroid shots into the joints.

Fingers and toes crossed for Grace - keep us updated.
09-02-2017, 11:05 PM   #113
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I am glad they approved for the MRI. Finger crossed for answers Caitlyn also has an issue with headaches from inflammation. It was recommended we try an allergy medicine as they say that can help. We stared he on Claritin and she has been having much less headaches.
09-03-2017, 06:57 AM   #114
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Kim, she's been on allergy meds for years. Zertec woresults best for Grace but over the years we've tried different ones. Thanks
09-27-2017, 01:21 PM   #115
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Grace stated her biweekly Remicade today.

Does anybody here do rapid infusion?

I haven't asked her rheumatologist yet, just wondering.
It'd be nice not to be here half a day ever other week.
09-27-2017, 01:30 PM   #116
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Grace stated her biweekly Remicade today.

Does anybody here do rapid infusion?

I haven't asked her rheumatologist yet, just wondering.
It'd be nice not to be here half a day ever other week.
Don't worry about Grace because Remicade can be effectively for the disease!
09-27-2017, 01:48 PM   #117
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Jack has done them for the last 3 years except for the last one (but I've already vented about that). We love them. It was 15 minutes for the solumederol and exactly one hour from when they start the remicade. We were usually there for about an hour and a half, just depends on how long the pharmacy took since dosage is weight based they would weigh right when we got there and order meds.
We always had his appointments at 3:00 and were out before 5:00 as opposed to appointments at 12:30 and out by 5:00. He has never had any reactions so it has worked out really well for him.
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
09-27-2017, 08:46 PM   #118
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Good to hear as we may be looking at remicade for our younger daughter.
09-28-2017, 03:31 AM   #119
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Headaches/jaw pain if not TMJ disorder, maybe look at trigeminal neuralgia.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
10-04-2017, 07:16 AM   #120
Farmwife
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So my children and I got our flu shots yesterday.
Today...... all of us have flu like symptoms, to the point Grace is laid out on the couch.

If this is caused by the flu shot does that mean we can spread the flu?
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