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Question about arthritis and Crohn's

H has had chronic swelling in her ankle, mostly left but sometimes she complains about the right one also. For years it was just pain but in the past few months there is fluid.
So she has xray next week and then GP will send info to GI.
Meanwhile GI called to set up a conference on Friday. Her labs are showing flags now, anemia related, and that tends to be her sign of Crohn's activity.
Presumably, he will want to adress it. If he wants steroids should I decline in order to get the possible arthritis diagnosed? Or is it better to just let the meds do their thing so she is better faster?
I will ask him this too, depending on what her options are. Just looking for experience related advice as ever.
 

my little penguin

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X-ray will only show damage (after years I think ?)
Arthritis needs to be observed by a pediatric Rheumo
And mri /ultrasound of the joint
Plus they need to examine the joint (all of her joints )
If she has had joint pain for years why didn’t the Gi refer her to a rheumatologist at the beginning ?
Completely confused on why the gp didn’t refer either
Since crohns and arthritis go hand in hand
 
X-ray will only show damage (after years I think ?)
Arthritis needs to be observed by a pediatric Rheumo
And mri /ultrasound of the joint
Plus they need to examine the joint (all of her joints )
If she has had joint pain for years why didn’t the Gi refer her to a rheumatologist at the beginning ?
Completely confused on why the gp didn’t refer either
Since crohns and arthritis go hand in hand
The GP referred for an xray because he had to confirm no injury to the joint before assuming arthritis.
So...GI will get the info and refer to Rheumatologist- being able to get her in more quickly I think.
Anyway, assuming arthritis, what do you think about the med question?
 
Not well versed on the arthritic front (although T had painful joints with no swelling for years) but wanted to say that joint issues are also an EIM of Crohn's and if her Crohn's is not well controlled then joints can flare as well. It seems like this poor kid has never really hit a good solid remission.

I will let MLP and Maya142 handle the arthritis questions.
 

Maya142

Moderator
Staff member
H has had chronic swelling in her ankle, mostly left but sometimes she complains about the right one also. For years it was just pain but in the past few months there is fluid.
So she has xray next week and then GP will send info to GI.
Meanwhile GI called to set up a conference on Friday. Her labs are showing flags now, anemia related, and that tends to be her sign of Crohn's activity.
Presumably, he will want to address it. If he wants steroids should I decline in order to get the possible arthritis diagnosed? Or is it better to just let the meds do their thing so she is better faster?
I will ask him this too, depending on what her options are. Just looking for experience related advice as ever.
Yes, an MRI or ultrasound is much more accurate. I would honestly want her seen by a rheumatologist before putting her on steroids. It will be hard for the rheumatologist to assess her if she's on steroids. I do know it takes quite a while to get into pediatric rheumatology (there are only about 300 pediatric rheumatologists in all of the US!) though.

The x-ray will likely not show arthritis damage yet. Damage can develop fast in kids with aggressive arthritis, but most often it is slow. So what a rheumatologist would do is examine each joint (even ones that don't hurt, because just like with IBD, you can have inflammation without pain or with young kiddos, they are so used to pain that they don't complain) and look for signs of inflammation - swelling, fluid, redness, warmth etc.

An ultrasound will show active inflammation. So will an MRI. An MRI is more accurate and will also show early stage damage that doesn't show up on x-rays yet (such as small erosions).

Arthritis with IBD can flare when the IBD flares or it can flare independently. Typically, if peripheral joints are involved (peripheral means joints other than the spine, which are called axial joints), particularly large joints like knees, then treating the Crohn's may get rid of the arthritis.

If the arthritis is the type that flares independently, then you could treat the Crohn's with Humira and she still may have arthritis. At that point you consider adding something like MTX or upping the dose of Humira.

Axial arthritis (involving the spine or sacroiliac joints) almost always flares independently of the Crohn's.

With peripheral arthritis - it could go either way. It's possible that if you get her Crohn's into remission the arthritis will go away. But it's also possible that a child may have Crohn's that is in remission (like my daughter) and yet still have very active arthritis (in my daughter's case, both axial and peripheral).

There are certainly cases of peripheral arthritis which flares independently of the Crohn's.

Given H's case, it sounds to me like her Crohn's isn't well controlled. Is that right? I do remember that she had a low Fecal Cal a little while ago. So you may need to change meds - typically Remicade would be the next option.

There are only so many drugs that treat both inflammatory arthritis and IBD - Humira, Remicade, Cimzia, Simponi. Anti-TNFs treat both axial and peripheral arthritis.

The other option is Stelara. That works well for peripheral arthritis, but NOT for axial arthritis.

I am surprised that H hasn't been referred to rheumatology if she has been complaining of pain for years. Arthritis, just like IBD, can cause significant damage. My 22 year old will be having joint replacements this summer.

Just like with IBD, you want to treat it aggressively, and get it under control and ideally, in remission. That lowers her chances of permanent damage. Permanent damage = permanent pain, so you definitely want to avoid that.

I would push to have her seen by rheumatology as fast as possible.

Also want to add - anemia can be caused by both Crohn's and juvenile arthritis. If she has Crohn's symptoms right now, then it's probably that. But if her Crohn's has been quiet and well-controlled, it is possible that the arthritis (if she has it) is causing anemia.
 

Maya142

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Staff member
Also wanted to add - if her GI wants her on steroids, then something like Entocort or Uceris would not affect the arthritis too much. But if you were to put her on 40 mg of Prednisone and then see a rheumatologist, it is very possible her joints will look normal.

Additionally, it is possible to have joint pain without inflammation caused by Crohn's - that's called arthralgia. It's painful, but unlike arthritis, it won't cause permanent damage since there's no inflammation.

But if you're seeing swelling then that does sound like inflammation :(.
 
Her fcal in early April was 75! It was the first she has been under 200. Her appetite has been good,she is growing. The main Crohn's symptom we've seen is that creeping fatigue and brain fog, worse from month to month and correlating with bloodwork. We had a week of diarrhea a month ago but it disappeared completely.

I didn't realize that anemia could happen due to arthritis.

I will bring her fcal result (I don't run them through GI) to round out the picture.

I will push for an investigation through rheumatologist.

She is taking 40mg Humira weekly plus 10mg methotrexate weekly.
 
And yes, the swelling is the new part. She described it feeling like there was a rubber band around her ankle after walking. Then we took a closer look and the fluid was there behind her left ankle bone.

I watched it first for a month. Swelling is minimal in the morning and increases with use. It is different from the descriptions of arthritic swelling that I have read where a person would wake up stiff.
 

Maya142

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Staff member
Yes, it can most definitely cause anemia. There are many names for this type of arthritis - technically, it's a type of spondyloarthritis. It can be peripheral or axial or both (if both the spine AND peripheral joints are involved, it is still considered axial for treatment purposes).

Peripheral SpA can be treated with MTX. Axial SpA requires a biologic or an NSAID (contraindicated for many patients with IBD). My daughter's axial SpA is MUCH, MUCH worse than her Crohn's, so she is allowed to be on an NSAID. Typically, they try one that is relatively easy on the gut - usually Mobic or Celebrex.

You may also hear this type of arthritis called enteropathic arthritis or IBD-related arthritis. In kids specifically, it is also called enthesitis related arthritis which is the newer name juvenile spondyloarthritis.

My point is that it's all the same condition, which overlaps with Crohn's. So don't get too worried if they call it enteropathic or IBD related - those are all just different names for the same disease.

Here is some info: https://www.aboutkidshealth.ca/Article?contentid=13&language=English

So if her Fecal calprotectin is 75 and that's the lowest it's been, then it's very possible that it is arthritis that flares independently of the Crohn's.

Sometimes if it's just one or two joints involved, they will do steroid injections directly into the joint. That gives the child almost immediate relief. Little kids are usually sedated for joint injections.

But as you know, steroids can be harmful. They can lower bone density and they don't like injecting joints too often. So it's usually done to get the arthritis under control quickly, while you're waiting for a medication to work.

Given that H is on 40 mg of Humira weekly, I'm not sure what they will do if they do find active inflammation in her ankles. We actually did up Humira to every 6 days for a while.

You could certainly up her MTX and that might be enough.

In terms of swelling, you are right that there is definitely more stiffness in the morning. That gets better as the day goes on. Does H limp or walk funny (my daughter says "like the tin-man from the Wizard of Oz)??

But in terms of swelling, it varies. I know that my daughter's ankles are the same way - the least swelling in the morning. Not sure why.

I do know that typically while in arthritis the stiffness and pain is high in the morning and at night, in enthesitis, the opposite is true. Pain and swelling actually get worse through the day because you use your tendons and ligaments a LOT during the day (enthesitis is inflammation where tendons and ligaments insert into the bone).

So for my daughter's ankles, we can actually see her achilles tendon become puffier and puffier as the day goes on.

In terms of the swelling being new, it's possible there was some degree of inflammation and swelling was much less obvious then. H could have had pain from that and as the inflammation got worse, swelling became more evident.

That would be my best guess though - as an arthritis mom and not a doc ;).
 

Maya142

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Staff member
Oh wanted to add - based on your description it could be a tendon and not the joint. Tendons are trickier than joints in some ways - hard to treat. Typically biologics work best for enthesitis. There are some tendons that can be injected with steroids if necessary. But with others, the risk of rupture is too high (like the achilles tendon).

Does she play any sports? Anything that could have caused an injury? I know it's a long shot, but I hate for H to have to deal with something else besides the Crohn's, especially since her Crohn's is severe. And sometimes, arthritis can be a beast :(.
 
Oh wanted to add - based on your description it could be a tendon and not the joint. Tendons are trickier than joints in some ways - hard to treat. Typically biologics work best for enthesitis. There are some tendons that can be injected with steroids if necessary. But with others, the risk of rupture is too high (like the achilles tendon).

Does she play any sports? Anything that could have caused an injury? I know it's a long shot, but I hate for H to have to deal with something else besides the Crohn's, especially since her Crohn's is severe. And sometimes, arthritis can be a beast :(.
H has never been an athlete. She has always avoided strenuous activity, sometimes very cleverly. She has been known to make up games where she calls the shots...and the others do the running.
But there is always the possibility of injury, so we are investigating that first.
I do like to walk with her. But even the 10 minute walk to and from school is not always easy between her ankle and anemia.
Thank you so much Maya142 for the details in your posts. I laugh when you say "just a mom"!
 

Maya142

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H has never been an athlete. She has always avoided strenuous activity, sometimes very cleverly. She has been known to make up games where she calls the shots...and the others do the running.
Very smart kiddo ;). Made me laugh out loud!!

My younger daughter always played on the left side as a soccer player. Even though she is right-handed. Everyone always marveled at her ability to play well with both feet but it was because she had arthritis in her knee. But she started playing on the left at age 7 and wasn't diagnosed till 12.

That's when we realized WHY she always wanted to be on the left :( - we had no idea that there had been pain and stiffness all along, probably because M was so young and so used to pain.
 
My son wasn't into sports as a teen and didn't like gym and I think it was because he had limitations way before we ever knew about them. He told me years later, that his friends said he "ran funny". Eventually his walk was affected.

I like to correct May142 on "just a mom" - I would say "just a supermom". :)
 

Maya142

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Unfortunately, that is one of the things I see a LOT of JIA Facebook groups - parents saying that their child always "runs funny" or "walks funny" but being brushed off by their pediatrician when they mention their concerns.

It's not uncommon at all for parents to say that their kids had been complaining for years before diagnosis. JIA is tricky to diagnose and this particular subtype that is associated with IBD (juvenile spondyloarthritis/enthesitis related arthritis) is one of the rarer JIA subtypes and so it is even harder to diagnose kids with JSpA because they often don't present with dramatic swelling that you seen in other subtypes.

I like to correct May142 on "just a mom" - I would say "just a supermom".
That is kind of you but honestly, we have made 8 bad decisions for every good one. But that's parenting I suppose ;).

My goal is to prevent children from having to go through what my daughter has been through - 8 biologics, 6 immunosuppressants, 8 surgeries (counting the 2 replacements this summer) and of course, completely debilitating pain.
 
Our consult was interesting. He will refer to Rheumatologist but is wondering why low hemoglobin but also low crp. Crp was .8
So, yes we need to address the ankle but Crp should be elevated.
He ordered extra labs including ferritin, B12, zinc and so on. I didn't see the lab sheet.
Also booking mre to see if anything is active.
He said next med step is 80mg Humira weekly. 😦
Poor H. She is so tough, never cries, but yesterday was too much. Sobbing during her labs, sobbing at the thought of going to school. She just...cracked.
Broke my heart.
The upside is, it really doesn't look like active disease at this point. But what?
 

my little penguin

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Arthritis
Crp can be normal and still have inflammation
Ds was on 80 mg weekly of humira (1 shot every 5 days)
Sorry she had a rough day
Sometimes it’s just tough
Hope Rheumo can help
 

Maya142

Moderator
Staff member
No, very common for kids with this type of arthritis to have negative bloodwork. My younger daughter, who has severe AS, had perfectly normal blood work when diagnosed (except anemia and a positive HLA B27+ - that's a genetic test). But ESR and CRP were fine.

Now that has changed - she has had a high CRP for 3 years (goes to 0 on steroids though, so we know it's inflammatory). But now her AS is much worse.

But her older sister, who also has AS, has normal ESR/CRP, even when she has very obvious swelling in joints.

In AS - so the adult form of the disease - 40% of patients have NORMAL inflammatory markers. I suspect those numbers are much higher in the kiddie form of AS - enthesitis related arthritis/juvenile spondyloarthritis, based on talking to JIA Moms.

A GI may not know this though. A rheumatologist, particularly a pediatric rheumatologist would.

We did Humira every 6 days, but not more often than that - though my girls were on Humira quite a few years ago (3-5 years or so). But I have heard of 80 mg weekly being given now.

All kiddos have rough days. But sometimes they need some extra support. Both her GI or her rheumatologist can probably refer you to a psychologist who helps kids with chronic illnesses to learn how to cope.

Poor kiddo. Ice cream or chocolate or a little reward for being brave helps too ;).
 
Thank you Maya142 . I am very grateful that you share your knowledge.

So, GI is working to get that referral to peds rheumatologist for her. The specialists at our children's hospital work closely together so hopefully it won't take too long.

The stories about your daughters give me the confidence to push for help for H.

I think the GI is ruling out any GI causes in the meanwhile.

We don't have citrate free Humira yet. I asked him to try to help H be the first one in Canada. Especially if the dose changes!
 

Maya142

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I was actually thinking about that. I hear really great things about citrate free Humira - stories about kids who would hide in a closet to get out of taking the shot, who would kick and scream and cry and have to be held down, and now their parents say that the citrate free Humira has been a miracle.

I wish it was available in Canada. I'm not sure why it isn't, if it is in Europe (and has been for several years there) and now in the US.

But before we had citrate free Humira, I know that adding Lidocaine helped. We never tried it but I know my little penguin did that for her son, and I believe it helped him a lot.

My younger daughter takes a biologic that was approved in the last few years for psoriasis and psoriatic arthritis. It contains citrate/citric acid. She says it burns a LOT - just like Humira did, and while she loves that it helps her, she says she still dreads it. And she's 22... It breaks my heart to think of a 6 year old having to deal with that :(.
 
H is already 8...time flies! But she has been taking Humira injections since age 4. She has been weekly for awhile but even so it is always on her mind.
She has a whole inner dialogue she goes through while we prepare the shot to make herself go through with it. She told me out loud once.
It is dreadful!
 

Maya142

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Oh my! How is she 8 already?! She was just 4!

She has been weekly for awhile but even so it is always on her mind.
Poor kiddo. I don't get why they are even still making biologics with citrate if it is known to cause so much burning.

The one thing that helped my older daughter when she first started Humira was learning that if she tensed up it would hurt more. Her rheumatologist told her that and had her practice tensing up the muscle in her leg and then relaxing it. Both my girls still use that trick - first they make it tense up, then relax it as much as possible.
 
So so sorry about all of this, Pilgrim. I don't have experience with the arthritis side, but I'm glad that your GI ordered an MRE to check on Crohn's activity. My daughter has had low CRP and ESR during several Crohn's flares, so it's good to check on that side of things too. Hugs to you and her.
 
Thanks pdx. It could be the Crohn's but labs good, and zero GI symptoms (fatigue aside). She's growing well, thankfully! I will be surprised if MRI shows anything.

Maya142 we will try the tensioning and see if it helps! That's a new Humira tip!
 

Maya142

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Don't get too excited - unfortunately, it helps only a little, not a lot.

Honestly, I never really mentioned it because I never considered it much of a tip :lol:. This is just me grasping at straws because I hate the idea of giving an 8 yo two burning injections a week.

Have you ever asked about Lidocaine? I know that there was a ped. rheumatology group that actually studied the addition of Lidocaine to Humira and found it did not alter efficacy and helped with pain. If you show that to your GI, maybe he'll consider it.
 

my little penguin

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Background/Purpose: Up to 37% of patients prescribed adalimumab (AD) report significant injection-site pain (Registered Prescribing Information, 2016). For AD to be a stable pre-filled product, the pH is 5.2, which contributes to injection-site discomfort. Injection site pain is a major factor in patient willingness to initiate/continue AD. Literature reports less injection-site pain with older age, smaller volume, and use of autoinjectors. In 2008, we also reported that addition of lidocaine (LID) decreased discomfort by 80% and improved acceptance of AD. Incompatibility is not reported between AD and LID. AD and LID were combined at room temperature; no precipitation occurred. In our practice, when initiating AD, patients are offered the option of adding 0.2 ml of LID to AD.

To better understand the impact of LID added to AD, we evaluated two groups of JIA patients: those who used AD with LID, compared to those who did not. Our aim was to understand characteristics of the groups and to identify patients who might benefit by adding LID. We also sought to assess differences in disease control and adverse events that might occur when adding LID

Methods: Chart review of AD-treated JIA patients was performed. Age when instituting AD, sex, diagnoses, ESR, joint counts, and adverse events were reviewed. Results were compared between LID users (LID+) and non-users (LID-). Chi Square, T-Test and Z-score statistics assessed differences between groups.

Results: 98 JIA patients treated with AD from 2008 to May 2017 were included; 71 patients added LID, whereas 27 did not. JIA subtypes were: 28 ERA, 17 poly, 26 oligo, 23 psoriatic, 1 undifferentiated, 3 systemic; uveitis was present in 19 patients. No differences in LID use by diagnosis were found. Fewer males than females added LID (56% versus 78%)( p = 0.036). Mean age when AD was instituted and duration of use was similar: 12.2 years of age in LID+ group and 12.7 years in LID- group; AD taken for 16.2 mos ±14.2 in the LID- group and taken for 20.9 ± 20.6 mos in the LID+ group (both age and duration NS). JIA patients ≤ 10 yo did not add LID more often than those ≥ 11 yo. Further analysis by age showed that 91% of early adolescents aged 10-14 years added LID, compared to 59% children aged 1-9 years and 50% teens ≥15 years (p=0.002). In the LID+ group, joint counts and ESR improved significantly after taking AD (p =0.002 and p< 0.00001, respectively), but no improvement was seen in either metric in the LID- group. 11% of the total population reported mild adverse events. One patient in LID- group discontinued AD due to injection site pain.

Conclusion: In our cohort, adding LID to AD was preferred more by female and early adolescent patients. Adding LID produced no increased adverse events and did not impede response to AD, as shown by improved joint count/ESR in the LID+ group after starting AD. Interestingly, the LID- group demonstrated no such improvement. This may reflect non-adherence to AD in the latter group possibly due to painful injections and will need further study. Our previous work showed AD plus LID produced less injection-site pain; hence patients continued this treatment. We conclude that it is safe to add LID to AD and certain JIA patients prefer this addition, possibly with improved adherence and better disease control.

Disclosure: B. Ostrov, None; B. Groh, None; L. V. Scalzi, None; C. A. Bingham, None; N. Gaffney, None; M. Buckley, None; L. Robbins, None; R. Ayala, None.
From


To cite this abstract in AMA style:

Ostrov B, Groh B, Scalzi LV, Bingham CA, Gaffney N, Buckley M, Robbins L, Ayala R. Adalimumab Therapy in Juvenile Idiopathic Arthritis: Addition of Lidocaine for Prevention of Injection Site Pain or Not? That Is the Question. a Comparison Study [abstract]. Arthritis Rheumatol. 2017; 69 (suppl 10). https://acrabstracts.org/abstract/adalimumab-therapy-in-juvenile-idiopathic-arthritis-addition-of-lidocaine-for-prevention-of-injection-site-pain-or-not-that-is-the-question-a-comparison-study/. Accessed May 11, 2019.

 

my little penguin

Moderator
Staff member
We added lidocaine for years to humira
Doc prescribed lidocaine vial and syringe
Then we just pulled the stopper out of the back of the humira
And added the 0.2 ml of lidocaine to the humira
Replaced the stopper (using good practices not to let the stopper touch anything
Or let the lidocaine syringe needle touch anything )

Helped Ds a lot
 

Maya142

Moderator
Staff member
For AD to be a stable pre-filled product, the pH is 5.2, which contributes to injection-site discomfort. Injection site pain is a major factor in patient willingness to initiate/continue AD. Literature reports less injection-site pain with older age, smaller volume, and use of autoinjectors.
Interesting - I generally hear on here that syringes are less painful. My older daughter switched from the auto-injector to the syringe and thought it was MUCH less painful.

In contrast, my younger daughter prefers auto-injectors because she says that while the poke is more painful (since you can't control the speed of the injection), but the injection is over much faster and she thinks using the syringe prolongs burning.
 
I looked into lidocaine in the beginning but the doctor I talked to thought the extra prep to use it just prolonged anxiety.
If they doubled her dose to 80mg weekly, I will push to try it, at least. Doesn't really sound like a huge hassle to use it.

Good news for us. We see Peds Rheumatologist in two weeks!
 

my little penguin

Moderator
Staff member
Glad your getting in quickly
That’s great news

No extra prep while the kiddo is there
I just put the two together
And then called Ds in for the shot
So no time difference as far as he was concerned.
But big pain difference
Hugs
 

Maya142

Moderator
Staff member
So glad you'll be seeing the rheumatologist soon!! That's great!

In terms of Lidocaine, I wonder if they are thinking about topical Lidocaine. That does increase anxiety for some kids (generally little kids) because it (usually in the form of EMLA cream) has to stay on 30 minutes before the shot. And in that time, some kids get very worked up over the anticipation of the shot. Some even vomit because they get so nervous.

But injectable Lidocaine is different - like MLP said, I'd prep it in a different room and then get H to come in only when you're ready with everything. Distract her with whatever works - blowing bubbles, very sweet or sour candy, playing a video game, watching a favorite show - whatever takes her mind off the shot. I've heard of parents saving a special video game for shot night - the kiddo only gets to play during the shot and right after the shot as a reward.

In terms of seeing the ped. rheumatologist, try to log her pain levels, stiffness complaints (especially in the morning or sitting for a prolonged period of time), whether she limps, whether she gets a fever or rash. Take her in clothes that will let the doc examine her easily -- shorts or leggings or a dress. They will likely check all her joints for warmth, swelling, range of motion etc. Wearing skinny jeans/jeggings doesn't help ;). I know H is only six, but my girls always grumbled when they made them take their jeans off for a gown :lol:, so figured I'd warn you!

Rheumatologist appts. can take a long time, so take something for her to play with.
 
It did say on the sheet to dress her in loose shorts and a t-shirt for the exam.

We went to the park tonight and she went all out and played frisbee with me. When she went to bed there was swelling below both of her kneecaps.😐

I would expect it above, maybe, more than below?

So it is now four joints with visible swelling. Both sides of her body.

Good advice about a symptom log. I always do it for GI visits, but should get one going for rheum. I have a few things listed on her GI calendar about the swelling so I will write that up on a separate sheet.
 

Maya142

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Staff member
Pictures of swelling are also very helpful. Poor kiddo. Swelling below her knee caps - could be enthesitis or could be the joint. I'm not really sure what you mean by below her knee caps though (I mean, I can't picture where it is).

Definitely take pictures. Ice and heat help with pain, if she's complaining.

Loose shorts and a t shirt are perfect. They just want to be able to see all her joints and how they move. It is possible that they will do ultrasounds in the office too, to see if there is a lot of fluid/inflammation. That shouldn't hurt.

It's important to explain to H that she tell the rheumatologist honestly where it hurts/if it hurts when the rheum checks her range of motion. I mention this because little kids tend to be very stoic, because often they have lived with pain so long that they don't know anything different.

My girls initially used to hide their pain - their pediatric rheumatologist used to look at M's face when she was examined because M would never tell her if she was hurting her, she'd just wince in pain.

Is she showing any signs of an IBD flare now? Or just the joints? Is her GI doing a Fecal cal to see if there is inflammation in her gut?

I'm mostly asking because when large joints like knees and ankles are involved, there is a chance that the arthritis will go away when the IBD is treated - that is, if the IBD is flaring in the first place.

If not, then they will treat the arthritis. I think in H's case, the treatment is likely to be the same either way - they can up Humira or up MTX. But it would be good to know if her gut is flaring too.
 

Maya142

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Staff member
Wanted to add -- I know her FC was low in early April - 75 is great! But I'm just wondering if it could have gone up after then.
 
Maya142 GI ordered an FCal which we mailed out early this week. He is also asking for Humira levels test and wants an MRE.

Usually CRP rises and albumen drops as she flares and those are fine as of now.

I will take pictures. Good idea.

He was perplexed. No signs of a flare at all except RBC etc. and she is very tired.

She does not complain of pain in ankles or knees. Sometimes she says her feet hurt and indicates her heels.

The knee fluid was around the lower part of the kneecap. Better this morning but she lay in a recliner until 1pm. Woke up at 6:30am. Wasn't into moving but just says, "I'm tired."
 

Maya142

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Staff member
Might just be arthritis then. Darn :(. I just hate for H to have to deal with something else.

CRP may or may not go up with this kind of arthritis. I have one daughter whose CRP is absolutely normal. The other one has a high CRP, but for the first 6-7 years, both her ESR and CRP were normal. It's why this particular type of arthritis, in both adults and kids, is so hard to diagnose.

Heel pain is characteristic of enthesitis related arthritis/juvenile spondyloarthritis :(. It's very common, especially in the kiddie form of the disease (though it is also common in adult SpA/Ankylosing Spondylitis).
 

Maya142

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Staff member
Fatigue is also very common when kids are flaring. I'd just let her self-limit her activities.
 

Maya142

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Staff member
Just happened to see this tweet from the Spondylitis Association of America:

Spondylitis causes inflammation. Your body uses energy to counteract it. The release of cytokines during the process of #inflammation can produce a sensation of #fatigue, as well as mild to moderate #anemia also contributing to a feeling of tiredness. #SpondylitisAwarenessMonth
 
Well, I guess the positive part is that we are on the road to sorting out a diagnosis.
I always hope it's something more minor and less life altering than I think. I have two weeks to be like CIC's ostrich.
The other positive is that the Crohn's is so quiet she is eating more than I've ever seen her eat. It is great to make food for her.
 
Yes it is great that she is eating and at least you are on the road to diagnosing what is causing these other symptoms. My son didn't have obvious symptoms. He was in his early to mid teens when his walking seemed different - subtle at first - I thought it was just the way he walked, but it became more obvious as time went by. He didn't really have pain, but unfortunately his hips were affected and he didn't get diagnosed until last year at the age of 19 with enteropathic arthritis. In his case, the arthritis was obvious before the crohn's although he had mild symptoms that again weren't really obvious.



Sometimes having obvious symptoms is better because we act on them. This forum is so great with parents that have all these years of experiences. I have learned and am learning so much from them.
Happy Victoria Day fellow Canadian. :)
 
Enjoy a relaxing Monday, Jo-mom!

It is interesting to read that your son didn't have any obvious symptoms either and he had a different type of arthritis than Maya's girls. If his is enteropathic is it flaring with his Crohn's or not?

My daughter had a lot of trouble walking at all when she was 3, and she was really sick with Crohn's but not diagnosed yet. I never thought about the possibility of two issues because Crohn's took center stage.

I wonder though what all had been going on. Oh well, hindsight.
 

Maya142

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Staff member
It is interesting to read that your son didn't have any obvious symptoms either and he had a different type of arthritis than Maya's girls. If his is enteropathic is it flaring with his Crohn's or not?
It's the same type of arthritis. I know it is all REALLY confusing but they're all names for spondyloarthritis.

Spondyloarthritis is an umbrella term - it includes Ankylosing Spondylitis, Psoriatic arthritis, non-radiographic axial spondyloarthritis, peripheral spondyloarthritis, enteropathic arthritis and juvenile spondyloarthritis/enthesitis related arthritis.

Enteropathic arthritis is IBD-related arthritis - it's a form of spondyloarthritis. Sometimes if the Crohn's was diagnosed first, they call it enteropathic arthritis. But it's the same disease - Jo-Mom's son has sacroiliac joint involvement as well as peripheral arthritis (if I'm remembering correctly).

In kids, it is called enthesitis related arthritis or juvenile spondyloarthritis usually. It can also be called IBD-related arthritis or enteropathic arthritis, if the IBD is diagnosed first.

The disease tends to manifest differently in kids than adults. Kids tend to have more peripheral joint involvement (so joints other than the spine - commonly large limb joints like ankles, knees, hips) and more enthesitis (often in the heels, knees, pelvis). But really any joint can be affected - fingers, toes, jaw, elbows etc.

Kids are less likely to have spinal disease when diagnosed, though it certainly can happen. Spinal or axial disease generally starts in the sacroiliac joints. To know whether a child has axial disease, you need an MRI of the pelvis and lumbar spine done. My girls both had SI joint disease when diagnosed, as well as peripheral joint involvement (ankles and knees for one daughter, knees for the other).

This has a good overview of Spondyloarthritis: https://www.spondylitis.org/Types-of-Spondylitis

If there are any other terms that I haven't explained well, please let me know!! Or if you have questions - I know it's ridiculously complicated.

Now the trend is to call spondyloarthritis axial or peripheral. If a person has both, then it's considered axial. The distinction is important because it impacts treatment. It is harder to treat axial disease - fewer drug options.
 

Maya142

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This is also a good overview, written by a pediatric rheumatologist at the Children's Hospital of Philadelphia (CHOP):

Spondyloarthritis (SpA) is a group of chronic inflammatory conditions characterized by arthritis, enthesitis, dactylitis (sausage-like swelling of the fingers or toes), acute and painful eye inflammation, HLA-B27 positivity, inflammatory back pain, and sacroiliitis. The term SpA encompasses ankylosing spondylitis (AS), undifferentiated SpA, inflammatory bowel disease associated arthritis, psoriatic arthritis, and reactive arthritis.

The term juvenile SpA (JSpA) refers to spondyloarthritis that starts during childhood (before age 16). Juvenile arthritis is the most common rheumatologic disease among children, with prevalence estimates ranging from 1-4 per 1,000 children, similar to that of Type I diabetes mellitus. In comparison to other categories of juvenile arthritis, children with JSpA have more frequent and higher intensity pain as well as poorer health status1-3. In one study, 75% of children with JSpA had moderate or severe pain, and 50% reported moderate or severe impairment of well-being over the prior week4. These children and adolescents are less likely to achieve and to sustain disease remission than those with other categories of juvenile arthritis5,6. Less than 20% of children with JSpA achieve remission within five years of diagnosis7.

Three classification systems used for JSpA include: The International League of Associations for Rheumatology (ILAR) classification of juvenile idiopathic arthritis (JIA); the European SpA Study Group (ESSG) classification; and the Amor criteria. Of these, pediatric rheumatologists use the ILAR classification most often. The ILAR classification of JIA describes a clinically heterogeneous group of diseases characterized by arthritis that begin before age sixteen, involve one or more joints, and last at least six weeks. The goals of JIA treatment are to control active inflammation and to prevent long-term damage. Poorly controlled JIA can result in growth disturbances, loss of range of motion of the joints, and blindness from chronic eye inflammation.

Most children with JSpA fall into the categories of enthesitis related arthritis (ERA), psoriatic arthritis, and undifferentiated arthritis.

Editor’s note: These three conditions fall under both the JIA and JSpA classifications.

Enthesitis-related arthritis is diagnosed in children who have arthritis and enthesitis or either arthritis or enthesitis plus at least one of the following: lower back pain or sacroiliac tenderness, HLA-B27 positivity, a parent with a history of SpA, onset of arthritis in a male older than six years, or acute and painful eye inflammation.

Children with psoriatic arthritis have arthritis and psoriasis or arthritis plus at least two of the following three characteristics: nail pitting or onycholysis (separation of the nail from the nailbed), sausage-like swelling of the fingers or toes, or a parent with psoriasis.

Children who are categorized as having undifferentiated arthritis don’t fulfill any of the JSpA or JIA categories, or fulfill criteria of more than one category.

Other conditions not explicitly accounted for in the ILAR JIA classification but that are traditionally thought of as JSpA include: juvenile ankylosing spondylitis (JAS), reactive arthritis, and inflammatory bowel disease associated arthritis.

JAS is AS that starts prior to age 16; 10-20% of adults with AS have symptom onset during childhood.

Reactive arthritis is arthritis that occurs following a gastrointestinal infection; reactive arthritis can be a singular event or may progress to chronic JSpA. The classic triad of painful urination, painful eyes, and arthritis seen in adults is much less common in children.

Inflammatory bowel disease associated arthritis is also considered part of the SpA group of diseases; as many as one-quarter of children and adolescents with inflammatory bowel disease develop arthritis

Other categories of JIA not considered under the umbrella of JSpA include: Oligoarthritis (arthritis in four or fewer joints); rheumatoid factor positive and rheumatoid factor negative polyarticular arthritis; (arthritis in five or more joints in the presence or absence of rheumatoid factor); and systemic arthritis (arthritis with a characteristic fever pattern and salmon colored rash, often associated with full body inflammation).

Children and adolescents with JSpA tend to have more peripheral arthritis than adults with SpA. The arthritis typically involves joints in the lower extremities in an asymmetric fashion. The presence of hip arthritis and arthritis of the small joints of the mid-foot are highly suggestive of the diagnosis. As with adult SpA, children can also develop arthritis of the lower back (sacroiliitis) or spine. Prior studies report that as many as two-thirds of children with JSpA develop arthritis of the lower back or spine within 10 years of diagnosis8. HLA-B27 positivity in these children increases the likelihood of developing lower back arthritis, though many children who are HLA-B27 positive never develop JSpA. The presence of lower back pain is not as helpful in JSpA as in adults with SpA in signaling the onset of sacroiliitis.

Current treatment recommendations for children with JSpA are based on those developed for adults with SpA and for all categories of JIA. The 2011 American College of Rheumatology Treatment recommendations for juvenile arthritis group children with JSpA with the other JIA categories9. Treatment suggestions are based primarily upon the number of active joints. Methotrexate and sulfasalazine are two commonly used drugs that have established efficacy for peripheral arthritis in children. Anti-tumor necrosis factor (anti-TNF) medications also have demonstrated efficacy in children with JSpA for peripheral arthritis and enthesitis10-17. Additionally, anti-TNF medications are effective in the symptomatic treatment of lower back arthritis; the efficacy for halting progression of structural damage is more controversial11. It remains unclear which patients need anti-TNF medications as not all patients have progressive disease. New and promising drugs that are being evaluated in adults with SpA, including ustekinumab, secukinumab, and apremilast, have not yet been evaluated in children but remain on the horizon.

We still have a long way to go to understand the causes and optimal treatment of JSpA. Additional studies on the evolution of disease (particularly lower back arthritis) and optimal therapy for peripheral and spinal disease in children and adolescents are greatly needed in order to improve both short and long-term outcomes in this condition.
 

Maya142

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Thanks Maya - great info - my son has hip involvement and SI joint only at this time. The rest of his spine were clear and no other joints are affected.
Sorry, couldn't remember exactly what was affected. It is more common for males to have extensive hip and spinal involvement. Women, like children, tend to have more peripheral involvement and enthesitis, though of course they can have axial involvement too.

Really glad to hear that so far it's only in his SI joints and hips and nowhere else. Hopefully the higher dose of Remicade will keep it that way!!
 
Yes! The rheumatologist said it would have been better to have caught it earlier but it is still early enough to prevent further damage with treatment, physiotherapy and stretches. He's doing really well on the arthritis front and hopefully hip replacement won't be in the picture for many years..... one day at a time, right. Thanks Maya for all the invaluable information you share with us - I know you have had quite the experience with both your daughters. Know that you are helping very many because of these experiences and one day perhaps we can do the same for others.
 

Maya142

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Yes! The rheumatologist said it would have been better to have caught it earlier but it is still early enough to prevent further damage with treatment, physiotherapy and stretches. He's doing really well on the arthritis front and hopefully hip replacement won't be in the picture for many years..... one day at a time, right. Thanks Maya for all the invaluable information you share with us - I know you have had quite the experience with both your daughters. Know that you are helping very many because of these experiences and one day perhaps we can do the same for others.
Many patients with SpA don't require hip replacements...so the hope is that he won't need them at all.

BUT, if he does, my husband's surgeon told him now replacements last for decades. His last set were done roughly 15 years ago and there is almost no wear.

And now there are replacements that can last 30 years, so even if he does need them, hopefully he'd only need 1 surgery.

The more movement and stretching, the better. Also remember that now everyone with juvenile spondyloarthritis or axial spondyloarthritis progresses to AS. My girls did, but we have a pretty strong family history of it. But quite a large proportion of patients now don't progress that far, since we have better meds.

And even those who have AS, they aren't seeing as much fusion as before. For example, the "bamboo spine" of AS (a spine that is completely fused, no motion) is almost never seen now.

My goal is only to make sure no one makes the mistakes we did, so no child has to suffer like my younger daughter had to. Because, as we learned the very hard way, permanent damage can mean permanent pain :(.

But she is a fighter - she got through a semester with recurrent CDiff. (she had it for 6 months, just had a fecal transplant 2 days ago), while needing TMJ replacements (so with severe jaw pain) and with flaring AS (due to the CDiff - any infection causes a flare). But she did it - she got through the semester despite all that :dance:!!

Now we just have to get her healthy this summer, so next semester is a LOT easier.
 
Maya142 do ypu think it is a good idea to work her joints before appointment? Or do they put the kids on a treadmill or something?
We will arrive at the appointment after 4 hours on the road.
 

Maya142

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No, they don't put kids on a treadmill. I'm guessing you're worried that there won't be visible swelling if she's been sitting for several hours?

Swelling may get worse after activity, but it won't go away altogether. A rheumatologist is able to feel inflammation in the joint - they'll be checking for fluid, warmth, range-of-motion, swelling. Swelling that may not be apparent to you is often apparent to them.

For example, we once went into an appt. and M had been feeling ok - not great. I could see swelling in her knees and fingers but the rheumatologist found inflammation and swelling in both elbows, which she hadn't complained about much. But there was enough inflammation that she had "flexion deformities" (couldn't straighten her elbows fully) - which occur from long-term inflammation. We had no idea she'd had inflammation in her elbows at the time, let alone for months.

Additionally, even if fluid is not visible to you, they may do ultrasounds which will show it. Kids with this particular type of arthritis - juvenile spondyloarthritis/enthesitis related arthritis - tend to have less obvious swelling.

I remember when my younger daughter was diagnosed, the orthopedist we saw (thought it was a sports injury :ybatty:) was surprised how painful her knee was when he examined it - I remember that she screamed. There was some swelling according to him, but not a lot.

But when the MRI came back, he was shocked at how much fluid there was in her knee, as well as signs of chronic inflammation (small erosions, thickening and scarring of the tendons). We were sent straight to rheumatology and my daughter had a diagnosis at the end of the appt. (it was easier with her because her older sister had been diagnosed already). There was enough fluid that soon after, her knee was aspirated (fluid removed and steroid injected).

Joint injections (with or without aspiration) are used often to get a flare under control while you wait for medications to work. My girls did it awake (at 12 and 14), without any sedation, but most kids are sedated, especially if multiple joints are done and the child is too young to hold still. It really varies though - I have heard of 5-6 year olds doing it with very mild sedation and I've also heard of 16-17 year olds who need to be put to sleep for the injections.

Anyway, I'm jumping the gun by talking about joint injections, -- my point is only that if there has been inflammation for a while, even if it's not visible to you, it will be to the doctor. And they may do imaging, which will give you even more info.

That said, make sure to take pictures of her ankles and knees AFTER playing (or whenever they're most swollen).
 

Maya142

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I want to add - joint injections are often used as a first step, particularly in certain countries. They're used quite often in the US but they're used even more in the UK and Canada.

The US is quicker to jump to biologics and systemic meds, but based on arthritis FB groups, and to me it seems like that in the UK and Canada, joint injections + MTX are used much more. It's like how EEN is used as a first-line treatment much more in the UK and Canada, and less so in the US (though that is slowly changing).
 
Joint injections sound very painful. How would your daughters rate joint injections compared to Humira?

Although she is already taking Humira and Mtx, so it would probably be easy enough to increase dosage. I am still waiting on a levels test though.

I feel very sad when I read what your family has been through. It is a great help to read though, thank you.
 

Maya142

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Staff member
They probably wouldn't do joint injections awake on a child that young. My girls say it depends on the joints and it depends on if they are removing fluid + injecting a steroid or just injecting a steroid. Removing fluid is more painful.

I asked M and she says it's a different kind of pain compared to Humira...not burning. Deeper pain, sharp but not burning she says. She says if they numb the joint first (which they often do), then the lidocaine does burn. Then you tend to feel more pressure and not too much pain.

But if it's done without lidocaine, then she says it's not burning pain.

She thought her first knee aspiration (at 12) was very painful at the time, but she didn't cry or fuss, just said it hurt a lot. She wasn't given Lidocaine that time (used a topical numbing cream but that's it), I'm not sure why.

But a couple years ago she had just a knee injection (at 19-20), without lidocaine, and she couldn't believe how little it hurt.

She says deeper joints hurt more - hips, SI joints, jaw are all hard. She has done injections in her knees (2 or 3 times), right elbow (1 time), psoas tendon in her hip (2 times), hip joint (3-4 times), left foot plantar fascia (1 time) and both TMJs - jaw joints (1 time), all without sedation.

She has done SI joints once with minimal sedation and it was a horrible traumatic experience, so for those she is sedated now. She has SI joint injections 3x per year for roughly 3 years - so 9-10 times, I'd guess. Generally they don't inject that often for other joints but with the SI joints it's ok.

She's had TMJ injections 3 times - twice with sedation and once without. She said pain-wise the TMJ injections hurt more than her knees, but compared to the daily pain she deals with, she didn't think it was bad.

But she does get anxious with procedures, because she's had SO many and has had some very painful procedures done without enough sedation and now has PTSD.

So we don't force her to do anything without sedation if she can't - she makes the decision. Currently, she is fine with doing all steroid injections awake except SI joints. She even had 14 injections into her face in April (did both TMJs plus many muscles) without sedation and did great, even though she was nervous.

M has an ankle ultrasound and injection coming up, I will update you on that. I'll ask my older daughter, whose had many ankle injections and aspirations how those feel.

M says she doesn't think she would have been able to lie still enough to do knee injections at 6 years old. That is also what I generally hear on the JIA Facebook groups - many kids are sedated till their teens. Some 11-12 year olds can do awake shots, and some 17 year olds can't. It really varies - it's like with Humira. Some kids kick and scream and cry and hide and other kids just deal with it.

But with a child as young as H, I haven't seen many stories of awake multiple injections. They at least give some sedation, even if the child isn't totally asleep. But I believe mostly the child is totally asleep -- they tend to use Propofol or even general anesthesia.

I wish my girls didn't have to go through all this...but it is what it is, unfortunately. I'm glad our experiences at least help others going through the same thing.
 
Maya, my heart goes out to your girls and for you too. As a mother, this must have been ultra difficult to watch. Your daughters sound like amazing young women. In a perfect world, no children should ever suffer or get chronic diseases. Your knowledge on this forum is greatly appreciated - more than you know. Pilgrim - hoping the best for your daughter. Perhaps an increase of Humira is all she will require. Big hugs to both of you.
 
The rheumatologist was very thorough. She concluded there were no signs of arthritis. H does have somewhat hypermobile joints which could be overextending and causing the swelling to happen.
We bounce back to GI in a week.
 

my little penguin

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Staff member
Since it’s hypermobility related
Did they send her to pt to strength the muscles around the joints to prevent swelling ???
As well as other things - braces etc...
There is a lot that can be done
 
Great news! But now I am wondering about those results that caused the GI to pause to begin with. Remind me, you sent off a fecal cal right? When was that?
GI appointment can't come fast enough for me!
 
Since it’s hypermobility related
Did they send her to pt to strength the muscles around the joints to prevent swelling ???
As well as other things - braces etc...
There is a lot that can be done
She left that to us, but did talk about us finding a pt to work with for muscle strengthening. Plus finding high top shoes. Didn't mention braces, I think because the knees are almost normal. Ankles are more hypermobile.
 
Great news! But now I am wondering about those results that caused the GI to pause to begin with. Remind me, you sent off a fecal cal right? When was that?
GI appointment can't come fast enough for me!
Leave it to you to get right to the point! Lol! Sent off the fcal a week or so ago. Appointment for both Crohn's kids Monday at GI, MRE is end of June to check small intestine. Humira levels submitted. I'm not calling for results since we will be there soon.
I think Crohn's is in remission. She is growing, eating, gaining weight. I've never seen such an appetite with her! But anemic and all that goes with it. I am very curious as to what the cause is.
 
:dusty:That is great news Pilgrim.
Did Rheumatologist have any suggestions on how to help your daughter? Glad it isn't arthritis.
I'm open to suggestions! We discussed physio to strengthen muscles around joints and wearing high topped shoes.
 
Definitely PT would be good. Orthotics? If you are going to a good PT, you can ask about orthotics and they can advise you if it's something that might help. Do some research on good PTs in your area. A good one can make all the difference. We had a bad experience to start, but now L is going to a fantastic PT. In Ontario, children 19 and under are covered but you have to go to a PT that has this option btw.

So great that she is growing and eating up a storm. :)
 

my little penguin

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Staff member
Hope the pt helps
They have all sorts of braces including ankle braces
My oldest non ibd has hypermobilty issues
Pt makes a world of difference
 
Wanted to add that A LOT of kids without Crohn's are anemic. It is a very, very common thing. I was always anemic. My mother was. My friend was. It is common.

Because anemia is a warning sign our Crohn's mommy minds immediately go to disease and I don't think that is a bad thing. I think disease activity has to be ruled out but we have to remember our kids are also kids and will experience normal kid things. So good you sent off fecal cal and have an appointment but maybe don't drink the whole case of wine yet.
 
I think her GI should drink the wine! In contrast to the freak out norm, his office called me on the anemia!🍷
He asked me if I knew why she was anemic because her crp was so low. I mentioned the swelling....and there it goes!
So he is going through all the necessary checks to rule out active small bowel disease and mineral deficiencies.
I'm pretty relaxed! I'm donating my wine bottle to CIC. Maybe they can run it through an IV since she is at the hospital anyway?
 
Bottle? Singular? Is that all you have? I say we start a Gofundme and instead of $'s you all send me wine!

I happen to think it is cruel and unusual punishment to admit my daughter in the middle of wine country and keep me locked up like this!

Being the care giver for O (hubby is with T and all her antics) I haven't touched a drink in almost a month! My liver is in shock! The whole week she was running fevers in school I didn't touch the stuff because I knew at a moments notice I might have to drive to the E.R.. I think they might frown if I made her drive us:shifty-t:
 

Maya142

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Staff member
This is great news! Hypermobility is no fun to deal with but PT can really help. My younger daughter is hypermobile - not everywhere, especially now when she's lost a lot of mobility. But she used to be quite hypermobile and we were told it contributed to her pain.

My older daughter also has several hypermobile joints.

Physical therapy should really help. It's really the best treatment - bracing can help, but strengthening her muscles so they support her joints is important.

Few tips:
We went to a specialized running shoe store. The staff there took a LOT of time to figure out M's issues and find her some shoes that worked. I don't know if they make the same ones for little kids, but M's shoes were from Saucony.

Additionally, we did see a podiatrist for shoe ideas and he suggested custom orthotics. They helped my daughter so much that my older daughter and husband got them! PT can also help you get them - we just happened to go through a podiatrist. He made molds of her feet and then made the orthotics. They helped SO much more than anything we had tried before - and we had tried OTC orthotics and orthotics you can order on the internet, recommended by her rheumatologist.

She was shocked at how much they helped. Proper sneakers also made a huge difference. They should be more rigid - not the kind you can bend in half because they're so light and flexible. That's due to the barefoot running trend but it's not right for kids who need extra support. KT tape can also help.

She saw a foot and ankle surgeon due to her painful feet and he suggested this brace, but she has one ankle that is significantly worse than the other, so she only wears it on that foot. It is kind of bulky but it's the best support we've found. When her ankle is less bad, she uses an over-the-counter brace.

My younger daughter has done a LOT of PT - often twice or three times a week. It helps a lot and is very worth it.

Of course, wine helps too ;).
 
Not yet. We had that appointment last weekend which rolled into our GI appointment this week with lots of travel and then 500 million other things. But it is on my list!
Maya142 Thank you for your experience with hypermobile joints! Gives me a frame of reference!
As for GI. Her fcal from May was 450ish. So disappointing! Her April sample was 75! Her Humira levels were the highest he's ever seen in practice.
H describes it as a win/win. We go to scopes. If no active disease we drop Humira to biweekly. If active disease we do med change. He did not speculate to which med. He says her hemoglobin etc is very sensitive to disease activity. She is mildly anemic but everything else is awesome.
 

Maya142

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Staff member
If her FCP is 450, then how can there not be active disease? If her FCP is that high with such high Humira levels, doesn't that mean Humira isn't doing enough?

I guess I'm surprised he's even mentioning the possibility of not finding active disease, when her FCP is 450 - which is 4x greater than her lowest FCP.
 
Sometimes constipation elevates it? Or he appeals to my need for denial?

Ok. I am certain you are right. But I am holding onto that 75 in April. It was so amazingly low! How could it just fall apart? We didn't get even a whole month to hope!

She also has no pain, eating everything....

Could probiotics raise fcal? We started those in April.

I am the face of denial!
 

my little penguin

Moderator
Staff member
Ds has constipation requiring daily miralax
And takes daily prescription probiotics
Last fecal was less than 50
So.....
Stay in your bubble a while longer
It’s a good place to be
But constipation and probiotics shouldn’t raise it .
 

Maya142

Moderator
Staff member
Pilgrim, I prescribe several glasses of wine after her appt. ;)...I'm pretty certain your GI is going to tell you it's not the constipation or the probiotics!

Really sorry to hear it went up. I was so thrilled to hear it had gone so low in April. Crohn's is the worst :cry:.
 
Move over Pilgrim I want to play in your sandbox!

Sorry, I think you know the answer to that question. Constipation will not raise cal pro nor will probiotics. You know I am obsessed with cal pro, I have seen some studies that say IBS might raise it but not to that level. Also NSAID's will raise it but again based on Maya's girls not to that level. Let's see...has she had any gastro bugs lately? Celiac can raise it, did you have another child who has Celiac? She doesn't seem to be presenting with symptoms of Celiac but I don't want to shock your system too hard when I yank your head out of the sand.

The good news is it isn't crazy high. But I would count on the fact that there is going to be at least a little inflammation. At 450's it could even be just histologic inflammation but that still means that with a crazy high Humor level she probably has to move to another med.

One last hopeful thought is that I have read that cal pro can vary widely from one day to another, some by hundreds of points. So I guess it is possible that this was a blip and maybe another taken two weeks later will be much better but under 100? I doubt it.

When are scopes?
 
Waiting on scope date.

You have been reading the same research articles as my GI. He mentioned the possibility of fluctuations. Mentioned timing of sample (as in time of day). It should be from the first bm of the day. In H's case there is rarely ever more than one per dsy so I don't think that issue affected the lower sample.

I accept it. Just waiting on scopes. He said the wsit time is a few months due to summer holidays.
 
You are doing everything you can right now so it's just a wait and see game, so enjoy the wine in the sandbox a little longer, and don't let CIC drink all your wine or push you out of the sandbox. You deserve to be there. Actually so does she - so play nice. I hope it was just a one-off and all will work out well.
 
Well, I have heard it can fluctuate by hundreds of points but being honest that usually occurs at the higher levels like around 1,000. Not so much at lower levels but o.k. I'll bite
 
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