Another year older and a new Dx.

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Farmwife

Farmwife

Joined
Apr 28, 2012
Messages
6,310
My Grace turned 8.:sign0085:
She wanted her favorite Mexican restaurant, so she could order chicken nuggets. :ylol:
It was a good family party.
Everyone bought her some kind of art kit.
The next day I found glitter glue stuck on my rear.:yfrown:
Looked like I squashed tinker bell. :ylol:
Then almost broke my neck on thousands of tiny beads that had accidentally fallen.
I'll make sure to thank my mother in law at the next visit.

Grace was dx with Ehlers-Danlos Syndrome (EDS) last week.
So now we meet with the gi and discuss EDS vs IBD.

At least it's starting to all fit.

Hugs to you all!
 
I'm glad Grace had a good birthday. I wish I could see a picture of her. I love the word picture of squishing Tinkerbelle with you butt. (I do believe in fairies, I do believe in fairies!) Jae is hypemobile and probably has EDS also. I'm glad things are starting to come together in answers for Grace, but wouldn't wish EDS on anyone. I hope she can find treatments that help.
 
Happy birthday, Grace!

My kids are 12 and 14, and every flat surface of my house is still constantly covered with craft projects. :ybiggrin:

Hope that the new diagnosis helps Grace's doctors figure out some good treatment options.
 
Happy Birthday Grace!

Sorry to hear she has another dx, but I hope her GI is able to come up with a good treatment plan.
 
Was wondering how things were going. Haven't been on for a while. Happy birthday to Grace!! Can't believe she's 8.
Hope the new diagnosis helps with treatment plans
 
Happy Birthday Grace!
You have me in tears, FW. Must have stepped on 10 beads today and pulled 5 from the dryer!
Keep us posted on the new diagnosis and what it means and where you go with it.
 
Which eds type?
Type III
is typically benign and associated with hyper mobility
It tends to run in families
Other types are more of an issues
Ds was dx with benign hyper mobility years ago as are other family members

Makes JSpA flares harder to detect and does increase joint pain if pt is not maintained
 
Thanks everyone.

Mlp, it's type 3 with a touch of classical. She just can't be normal. Lol
Unfortunately, benign is not Grace's eds or a lot of kids.
But im thankful it's not the deadliest kind.
 
M also has benign hypermobility. That's not to say it doesn't hurt, just that it's not fatal. PT really, really helps and she does her PT exercises at home daily.
 
Ds , most his relative and I have it as well.
As Maya said lots of exercise and working hard not to abuse the overly stretchy joints

Just like ibd vs ibs
Both cause symptoms
Both make you miserable
Only one does horrid damage
 
Sorry guys, nerves on edge while trying to deal with this.
Grace's effects her skin (silver tears, very soft skin but not overly stretchy).
Her low blood pressure, dizziness, constant low grade headaches and fainting they say is because of eds.
If she has gastroparesis, eds would probably be the cause.
 
Sending hugs Farmwife. A new diagnosis is NEVER easy.

It sounds like Grace has POTS. POTS is really common with EDS and so is Gastroparesis. For a while we thought M had POTS because she had the same symptoms - low BP, dizziness, fainted. Typically a cardiologist will treat POTS and there are some lifestyle things you can do that may make her feel better (we were told to increase salt intake and fluids).

For Gastroparesis, she'd need the gastric emptying scan to confirm. It can also be managed with diet changes and of course, medications. Erythromycin is typically used first.

None of this is easy - I'm sorry Grace has to deal with so many more things. Hang in there :ghug:.
 
Second the GP can be managed
The gastric emptying test is fairly easy -and boring

Second seeing a cardiologist for a tilt table test for pots
 
Farmwife, I'm sorry to hear about this news. A new diagnosis is scary even if our rational mind knows it can mean new minds can review her and new treatments become options. She sounds like such a happy and resilient little girl. I'm glad she enjoyed her birthday and those authentic Mexican chicken nuggets!

My ibd son has a mild case of type 3 eds as does one of his siblings. We've learned type 3 can be all over the place in how it manifests and how severe. I hope you get some answers and a plan.

Craft on, Grace!
 
Grace is 8! where has the time gone? Happy Birthday Grace!
Sorry about the new diagnosis, I'm not familiar with it but as always sending lots of support your way as you figure out this new path.
 
Hi y'all. :ghug:
For those of you in my hemisphere, I hope winter is being kind to you.
For those of you not in my hemisphere.....winters coming for you. :lol2:
We've had a crazy winter.
One week in the minuses and the next in the 50's.
Hey, I'll take it!

So onto the post.
Saw the gi and agreed gastroparesis need to be considered but :yfaint:
than said she can't do the testing because Grace is on Norco (acetaminophen and hydrocodn) and tramadol (not given together and only if I run out of Norco):thumright:.
The gi doesn't want to mess with taking Grace off of her pills and neither do I.

The gi and her pain specialist agreed to put her on Nuerotin/Gabapentin.
I guess it's too help with nerve pain.
Anyone try this med.

Things seem to be settling with her jia but now her ehlers-danlos is causing more issues.

Hugs from my little Farm Girl to you all!
 
Last edited:
My daughter was also on Tramadol when we were considering Gastroparesis. We did the test off Tramadol though, so we'd get an accurate result.

Norco plus Tramadol is a lot of pain medication for a kiddo her age - have you considered a second opinion? It can really slow down the gut -- cause nausea, constipation.

We also tried Gabapentin - it helped with sleep for my daughter, but not for pain. We gave it to her at night since it made her sleepy.
 
Honestly the gastroparesis test is for fours hours
Not ideal but we have gone off other meds for a over a week just to get accurate test results for other things (Ds does not take pain meds )

Second getting a second opinion
Has she been to an amplified pain clinic for kids
Cleveland clinic and the children's institute are close to you
Both get pain relief while getting kids off pain meds (that have been on them for years)
that other docs can't and still have pain relief
It is truly amazing to see


http://stopchildhoodpain.org/faqs/what-hospitals-offer-this-treatment-program/

http://www.amazingkids.org/Medical-Services/pain-rehabilitation

http://my.clevelandclinic.org/childrens-hospital/specialties-services/therapy-rehab/pain-rehab
 
We loved Cleveland Clinic! Every minute of it was worth it. M stayed 3 weeks but the length of the stay depends on how much therapy the kiddo needs. MANY kids are able to get off pain meds completely.

They do try and get kids off opioids (especially strong ones like hydrocodone) and replace them with meds like Gabapentin/Lyrica if necessary.

Cincinnati Children's also has a pain program, I believe.
 
Lol, sorry Norco now, not tramadol.
I have tramadol when we waited for the script for Norco to be mailed.
Took 5 days to get it,

She is on half doses now but is given full dost for break thru pain. Maybe one a week.
Thankfully her pain is better but not pain free.

Her bowels (at least lower gi) seems to be working good. One to two bm's a day.
It's her stomach that seems to be slow.
 
Opioids don't work that way for chronic pain - she is not going to be pain free with them, unfortunately. In fact, for chronic pain, they stop working over time. You need higher and higher doses to get the same effect - that's why you should hold off on opioids for as long as possible.

That is typically why they do not give them to kids except for acute pain or for breakthrough pain - not daily.

For example, if Grace is on a half dose now (say 5 mg Hydrocodone) in a year or two, that may not doing anything for her. Then you would need to up it, say 10 mg. Then in another year or so, you'd have to up it again, and so on. The higher the dose gets, the more dangerous it is.

I don't have a particularly good solution, just thought you should know. She is very very young, and has a lot of years ahead of her.
 
Thanks Maya
No mom or doc wants kids on this stuff as you know.

Grace had been to a pain clinic. It was amazing and we've worked her off of a few meds. She truly loved it and it got her back on her feet the quickest I've seen her do it.
Our goal is to her off all pain meds but it's a work in progress.
 
But your adding new pain meds gabopentin or neurotin
Both are also brain altering in a very little kid
You should try Cleveland or the or the children's institute both are known across the country to get her off meds not adding more
 
Hi everyone.

Just an update from the earlier conversation about pain meds.
After talking with 3 doctors we decided to try and wean her off of narco.
I was nervous, very nervous but I shouldn't have been.
She weaned in 7 days. Wow I was shocked.
We also learned that the nerve pain medication works far better at controlling her pains.
We still will have narco for sudden flares and her neve pain medication fluctuates as needed.
The moral of the story. .......
Always check with your doctors to make sure your all on the same page.
Also,
What may sound like a lot of meds to you or others may still be needed to give your child a good chance at a normal life. Trust your docs but question them when needed to.
 
Glad it worked!! Nerve pain medications are much better for her :) and they do actually work better for amplified pain.

Way to go Grace!!!
 
Glad that worked for her Farmwife, I so get what your saying about not wanting to give pain meds but sometimes on balance we have to so our kids have some chance at a normal childhood
 
Grace reacted to her Remicade today.
With in 15 minutes of the start
she said she was sick and started coughing.
Alarms started sounding and nurses started descending on her room.
Steroids were given and with in 25 minutes she was stable.
They called rheumatologist and they said give a go for second time but wait an hour.
All went well but I feel like I aged 10 years in that 25 minutes (does that make sense).

Sooooo question 1
Has anyone here have a one time only reaction? She's been on it for 2 years now.

And question number 2
For those who stared have reactions, how long until they pulled it?

Thanks for any feed back.
Hugs
 
Ds reacted
First reaction was after it finished but before he went home
So everyone wanted to try again with iv solumedrol

Next infusion
Iv solumedrol -pre treat plus Benadryl and Zyrtec
Still had a prolonged reaction

So it was pulled and he started humira
Almost 5 years ago
 
So sorry to hear this happened!! OMG, I can imagine how scary for you!

I'm not sure about your questions... I'm pretty sure I've read that there are times remicade can be continued after a reaction but I don't know how often it's continued 'successfully', ie without future reactions. :( Hopefully it can be continued...

Hugs... those 25 minutes must have been pure torture for you! :ghug: :ghug: :ghug:
 
So sorry to hear this--how frightening. I'm glad that she didn't react with the second attempt, and I hope it ends up being a one-time thing. :ghug:
 
I know one kiddo who had a reaction and then was pre-treated with steroids after that. She is still on Remicade, two years later. Her reaction involved chest tightness and a rash. She's never had a reaction after they added steroids though.

I hope it was just a one time thing.

Fwiw, M had a reaction to Entyvio and her GI says if she reacts a second time, after pre-treatment with steroids, we will probably have to switch drugs. We're (of course) hoping that won't happen.
 
A is not on Remicade, but she's been on her medication for years and only recently started having reactions. As with IBD, her medication options are somewhat limited so we're trying to ride this one out as long as possible. She receives fluids concurrently with the medication and that helps tremendously. We also pretreat with Tylenol, IV Benadryl and Solu-Cortef. The infusion is run at a slow rate, and even slower if she's sick. I don't know if those would be helpful options for Grace, but hopefully you can figure out something that works.
 
Farmwife said:
Grace reacted to her Remicade today.
With in 15 minutes of the start
she said she was sick and started coughing.
Alarms started sounding and nurses started descending on her room.
Steroids were given and with in 25 minutes she was stable.
They called rheumatologist and they said give a go for second time but wait an hour.
All went well but I feel like I aged 10 years in that 25 minutes (does that make sense).

Sooooo question 1
Has anyone here have a one time only reaction? She's been on it for 2 years now.

And question number 2
For those who stared have reactions, how long until they pulled it?

Thanks for any feed back.
Hugs
Click to expand...

Oh Farmwife so sorry to hear that - this happened Lucy with remicade but it happened a lot earlier, I think her third infusion, so they like you waited an hour and slowed it down and it went in ok, it happened again on her next infusion, it was so scary and it happened within minutes of it starting, they did the same thing again waited an hour and slowed down the infusion and it went in ok again. Unfortunately however, it wasn't working for her so we switched to humira after that, the main reason being it was not working, so I think they would have tried another infusion if it had been working but we will never know how many more they would have tried. Poor Grace hope she is ok and hugs to you - thats one of the scariest things that I ever experienced so I know how you feel, I was petrified and relieved when GI decided not give anymore.
 
DanceMom said:
A is not on Remicade, but she's been on her medication for years and only recently started having reactions. As with IBD, her medication options are somewhat limited so we're trying to ride this one out as long as possible. She receives fluids concurrently with the medication and that helps tremendously. We also pretreat with Tylenol, IV Benadryl and Solu-Cortef. The infusion is run at a slow rate, and even slower if she's sick. I don't know if those would be helpful options for Grace, but hopefully you can figure out something that works.
Click to expand...

Thanks, she's already treated with benadryl, Tylenol and fluids.
I'll find ot if the will add the steroids now.
 
Farmwife said:
Thanks, she's already treated with benadryl, Tylenol and fluids.
I'll find ot if the will add the steroids now.
Click to expand...

IV Benadryl will work better than oral. We've used Solumedrol in the past but Solu-Cortef works well too. There's options so don't get too discouraged just yet.
 
To be clear Benadryl iv or oral does not stop anaphylaxis from starting or stop it from happening
It purely makes the child more comfortable during a reaction

Iv steriods dampen the immune system response so it's less likely to react
Not as easily provoked
But again this won't stop anaphylaxis from occurring either

Epinephrine is the first line of treatment for anaphylaxis to stop it .

Good luck with the next infusion

Most if they are going to react will react during the next infusion
So fingers crossed
 
my little penguin said:
To be clear Benadryl iv or oral does not stop anaphylaxis from starting or stop it from happening
It purely makes the child more comfortable during a reaction

Iv steriods dampen the immune system response so it's less likely to react
Not as easily provoked
But again this won't stop anaphylaxis from occurring either

Epinephrine is the first line of treatment for anaphylaxis to stop it .

Good luck with the next infusion

Most if they are going to react will react during the next infusion
So fingers crossed
Click to expand...

I don't think I said Benadryl would prevent anaphylaxis. It, along with other medications can make reactions less likely to occur and less severe if they do occur. The only guarantee to prevent anaphylaxis is non-exposure.

Farmwife, I truly hope your doctors work something out. It is scary when your child is reacting and I understand that helpless feeling.
 
:dusty: No reaction to Remicade this time:dusty:
My happy bubble remains intact:kiss:

I was so happy, I bought us a whole bunch of sweets.

She back on the formula. She lost weight in the month and her appetite plummeted.
No real problem with stomach pain or bm's.

Now that she weaned off most of the pain meds, I'll ask her gi to do the test (gastric emptying test).

Does anyone know how long she has to be off the meds to get the test done?
 
I think they said it should be about a week. M was not on pain medication when we did the test, so I'm not exactly how long it has to be - she had been off them for about a month by the time we did the test.

I think it would probably be best to ask your GI - she's been off pain meds for several weeks, right? I bet they could do it now.

What are her symptoms, besides weight loss? Does she get full after a few bites? Nauseous? Stomach pain?? Those would be symptoms of Gastroparesis. Some kids also throw up after meals (M did sometimes) but others just get very nauseous.

Very glad she didn't react to Remicade - what a relief!
 
Maya, she's always starving but only can eat a couple bites and then is full.
Even the formula is slow going but is easier to get in her.
At least it keeps her weight up.
She does get nauseated and yes to a bit of stomach pain but not like an IBD flare.

She can go about 1 to 2 weeks of 80 percent food and is decent but then she goes back down.
 
Quick update:
:dusty:Grace just hit the 28th percentile for height!:dusty:
Highest she's ever been! :thumleft:

THANK YOU REMICADE!
 
Wow, congratulations Grace!! How's she doing with weight??

Did you ever get a gastric emptying test scheduled FW?
 
That's so great! My daughter's Remicade dose was increased back in January, and she's growing again too. It's all good, except it seems like she needs new clothes and shoes every 6 weeks!
 
Has anyone here received Remicade every 2 weeks?
Did it work?
We're you able to stretch it back out?

Grace's infusion is only lasting about two weeks (3 months in a row)
She's also in a jia and possible ibd flare.
Her rheumatologist put her on a pred burst for 14 days at 30ml.
 
We did 3 weeks once and 3.5 weeks once. That was with high dose Remicade (20 mg/kg). They generally don't like to go to more frequent than that - we then moved to 28 days.

What dose of Remicade is she on? Perhaps they can up the dose to make it last longer?

There are also other options - Simponi, Cimzia, Stelara.

Actemra and Orencia are approved for certain types of JIA but not IBD.
 
Never heard of every two weeks for remicade
Would assume a med change like Maya142
There are other options

Good luck
 
I've heard of Remicade every two weeks once or twice (like an extra loading dose to get a kiddo back on track) but not indefinitely.

I would assume her next med will depend on the kind if JIA she has. If it's poly JIA, then she could try Actemra or Orencia.

If it's enthesitis related JIA or juvenile spondyloarthritis, then it would make more sense to try Cimzia, Simponi or Stelara (which would all also take care of the IBD).

I know her dx was initially poly JIA but I can't remember what it is now?
 
Our doctor won't go higher than 10 mg/kg every 4 weeks with Remicade. Hope you can find something that works well for Grace's IBD and arthritis.
 
Multiple pediatric rheumatologists we have seen will go up to 20 mg/kg every 3-4 weeks for severe JIA.

Our GI, on the other hand, will only go up to 10 mg/kg every 4 weeks.

I guess it's because there have been some "high dose Remicade" trials for JIA/uveitis. There was a trial at Boston Children's (I think) but our rheumatologist just prescribed it off-label since she was aware of the trials.

I don't think there have been trials for doses higher than 10 mg/kg or more frequent infusions (than every 4 weeks) in pediatric Crohn's...but things could have changed since I last checked.
 
Maya142 said:
We did 3 weeks once and 3.5 weeks once. That was with high dose Remicade (20 mg/kg). They generally don't like to go to more frequent than that - we then moved to 28 days.

What dose of Remicade is she on? Perhaps they can up the dose to make it last longer?

There are also other options - Simponi, Cimzia, Stelara.

Actemra and Orencia are approved for certain types of JIA but not IBD.
Click to expand...

She's on 10mg/kg of Remicade, Maya.
Insurance fought because they said 10mg every four weeks was high.
I don't think upping will happen.
The Rheumatologist said she will get a split dose every two weeks. (5mg every time).
No he hasn't tested her levels. I didn't ask why. Maybe because they showed up normal before?
 
Maya142 said:
I've heard of Remicade every two weeks once or twice (like an extra loading dose to get a kiddo back on track) but not indefinitely.

I would assume her next med will depend on the kind if JIA she has. If it's poly JIA, then she could try Actemra or Orencia.

If it's enthesitis related JIA or juvenile spondyloarthritis, then it would make more sense to try Cimzia, Simponi or Stelara (which would all also take care of the IBD).

I know her dx was initially poly JIA but I can't remember what it is now?
Click to expand...

Grace has enthesitis related JIA. :(

I meet with the rheumatologist next month. And also the gi.
I'm assuming the gi will run an FC stool test if the pred doesn't bring this flare under control.

I've told the rheumatologist I wanted to hold of on the every 2 weeks until the pred has time to work.
If it doesn't, then we'll talk about a med change vs Remicade every 2 weeks.
 
Here's a question for allunch who knows more than me.

Grace is having intermediate pain and pressure in her stomach at her gtube site.
But. ....I can rotate her tube with out pain.

Any ideas?
 
Have you tried venting the tube? It could just be gas pains.

Feeding Tube Awareness has good info and a video on how to vent.

How does the tube site look - any granulation?
 
She's on 10mg/kg of Remicade, Maya.
Insurance fought because they said 10mg every four weeks was high.
I don't think upping will happen.
The Rheumatologist said she will get a split dose every two weeks. (5mg every time).
No he hasn't tested her levels. I didn't ask why. Maybe because they showed up normal before?
Click to expand...

I have not heard of increasing frequency to two weeks. I do know that it's possible to do a higher dose than 10 mg/kg every 4 weeks, just because we've done it and I know several other kids who have.

M was admitted to the hospital for her first 20 mg/kg dose of Remicade to get around insurance. She was also in very bad shape and given IV steroids for 5 days.

Insurance actually did not fight that. We did not have to appeal (shockingly!!). I guess because she was admitted and because we had tried other options before, it was deemed medically necessary.

If she has enthesitis related JIA then your options really are another anti-TNF (Cimzia or Simponi) or Stelara.

The other option would be to add another immunomodulator. You could do Imuran + MTX (low dose). Or Imuran + Sulfasalazine. Or you could try Arava (M does really well on Arava).

Which joints are flaring right now?
 
She's already on Imuran.
She also was on mtx but took her off that a year ago when
got better.
Hmmmmmm......I wonder if she could get back on mtx.

As to the tube, we use to vent all the time.
We tried it but nothing came out and she says it doesn't feel like it's gas.
 
What joints are involved? If it's peripheral joints (for example: knees, ankles, fingers, toes, elbows, feet ) then adding MTX might help. Trying Arava (which is a replacement for MTX - M takes it because she can't tolerate MTX) might help.

Imuran MIGHT help for JIA, but it isn't really used much for JIA anymore.

MTX, Arava, Sulfasalzine are all used a lot more because they are safer and generally easier to tolerate.

If she has axial joint pain (SI joints for example), then you probably want to either up her Remicade dose/frequency (whatever the doctor wants and insurance allows) OR change biologics altogether.

We also use joint injections (directly into very inflamed joints) if there are just a few joints that are causing BIG problems. For example, we do SI joint injections regularly for M, since no med can seem to control the inflammation in those joints for her.

She also had a knee and elbow injection this spring which worked like magic and just got rid of the inflammation in those joints. It really was like magic!

If it's many joints, then you're probably better off switching or adding meds, or changing doses.

Pain and pressure at her g-tube site - could it be inflammation in the stomach? Does the site look ok - red or irritated? It could be an infection.
 
Maya142 said:
What joints are involved? If it's peripheral joints (for example: knees, ankles, fingers, toes, elbows, feet ) then adding MTX might help. Trying Arava (which is a replacement for MTX - M takes it because she can't tolerate MTX) might help.

Imuran MIGHT help for JIA, but it isn't really used much for JIA anymore.

MTX, Arava, Sulfasalzine are all used a lot more because they are safer and generally easier to tolerate.

If she has axial joint pain (SI joints for example), then you probably want to either up her Remicade dose/frequency (whatever the doctor wants and insurance allows) OR change biologics altogether.

We also use joint injections (directly into very inflamed joints) if there are just a few joints that are causing BIG problems. For example, we do SI joint injections regularly for M, since no med can seem to control the inflammation in those joints for her.

She also had a knee and elbow injection this spring which worked like magic and just got rid of the inflammation in those joints. It really was like magic!

If it's many joints, then you're probably better off switching or adding meds, or changing doses.

Pain and pressure at her g-tube site - could it be inflammation in the stomach? Does the site look ok - red or irritated? It could be an infection.
Click to expand...

Right know her biggest problem joints are knees, elbows, ankles subluxing and dislocation) 1 hip, one shoulder (keeps subluxing).
Our problem is figuring out jia from eds. Very frustrating :yfrown:

Tube looks good but inflammation in the stomach is a concern.
Last scope showed scaring and inflammation at the microscopic level.
She's also getting those old familiar pains back in her sides.
Constipation seems to be starting also.
I don't like where this is heading.:ack:

Her appetite is great but only because she's on prednisone and periactin.
I have to sneak into my own kitchen because if I make too much noise Grace runs in wondering if I'm making something for her. LOL not like I have anything else to do LOL:ybiggrin:
 
Subluxing and dislocation sound a lot more like EDS than JIA.

Has she had ultrasounds or MRIs? Warm or swollen joints? That would tell you if it's inflammation. I would ask for imaging BEFORE you make changes to meds, because it would be a shame to take her off Remicade if EDS is the problem and it's not the JIA that is flaring.

Did the rheumatologist examine her before putting her on Prednisone?

Is she doing physical therapy for the EDS? If you strengthen the muscles surrounding joints, you should have less trouble with subluxing and dislocating joints (to some degree anyway).

Regular gentle physical activity - such as swimming and biking will also keep her muscles strong and help them support her joints.

It sounds like she needs testing to see if this is inflammatory or EDS - that will make the treatment decision. If it's EDS, PT could help a lot.
 
Grace pain doc is a leading expert in EDS. Which is cool because we didn't even know that when she started seeing him.
He works closely with her rheumatologist to make sure everything is done well.
Grace has been in twice-weekly therapies for years now and works with a therapist that works with her pain doc also.
Her joints have actually never gotten red or swollen much.
Unfortunately her type of arthritis just doesn't have that in common.
That's why her rheumatologist said that her type of arthritis is actually more damaging than the kind that does swell.
Yes at mri's, xrays and such.
Thankfully all looks well. ......for now.
 
I do not think that's true FW. We have seen about 18 rheumatologists, both pediatric and adult, as well as some world famous researchers, and I have never heard that.

There is absolutely no evidence that certain kinds of JIA are more damaging than other kinds. It's a spectrum for all types or kinds of JIA. Polyarticular JIA is not necessarily worse than psoriatic JIA which is not necessarily worse then enthesitis related JIA for example.

It really depends on the kid and the severity of the arthritis.

My girls both have enthesitis related JIA and now have progressed to AS. One has unusually severe AS, the other has moderate AS.

Both girls have had very red and swollen joints on occasion. Both girls have had joints aspirated (fluid was removed because they were so swollen). Both girls have had MRIs that showed effusions in knees/ankles/hips/jaw.

The swelling thing has to do with whether tendons are involved or joints are involved. Joints tend to get visibly swollen when they are very inflamed and tendons do not. In enthesitis related JIA or JSpA, both tendons and joints are involved.

If your kiddo has more tendon involvement, you may not see swelling with flares. You could still see redness and feel warmth. An ultrasound would show active inflammation and possibly damage from past inflammation (M has a lot of scarred tendons in her hip/elbow/pelvis)

MRIs and ultrasounds can be used whenever pain goes up to tell if there is inflammation. I understand that they've been done in the past - but have they been done recently to check if there is inflammation?

Alternatively, her rheumatologist could feel inflammation by examining her. Joints that are inflamed will have fluid in them and they can feel things like synovial thickening that are not visible to us moms.

M does PT twice a week as well as exercises once a day. She does both strengthening and stretching exercises. She is also hypermobile but has lost a lot of mobility in her spine. It is vital for her to keep her muscles - especially her core - strong to support her back.

I just would make sure that there is actually inflammation in her joints and the pain is not just from EDS (which can cause a lot of pain, but is not inflammatory) before touching her Remicade or adding other meds.
 
Second what Maya142 said
Ds has JSpA
He does not have redness but does have swelling (I have a hard time seeing it -but doc can and points it out ) and warmth
Joints should be colder than the adjacent tissues
So if the ankle is warmer than the shin
Inflammation in the ankle

The best way to describe the warm is sunburn
The skin radiates heat like a sunburned skin does

We didn't add any steriods until after doc physically could examine Ds since he is hyper mobile as well so pain is not the best indicator

He also swims daily to in reader muscle strength to kept loose joints from hurting

Did the rheumo say exactly what type of jia she has -since there are many under the umbrella ?

Did she exam Grace prior to the steriods ??

Things get very tricky when kids have a lot going on

As far as constipation
How is her fluid intake ? Summer time kids get "busy"
And "forget" to drink as much
Plus they eat things different from their normal diet
We assign Ds water bottles
He has to finish prior to the end of the day
Helps with the constipation problem

Good luck
 
To add to what MLP said -- if a kiddo has amplified pain on top of everything else, then it becomes VERY difficult to tell what is just chronic pain and what is inflammation.

It is easier if the kiddo has visibly swollen joints or a high ESR or CRP. But if he/she does not, then the doc needs to do more testing - at the very least examine her before prescribing steroids, and if it's still uncertain, then using ultrasounds (can be done right in the office) or MRIs helps show when there is active inflammation.

I WISH there was an easier way to tell - it is definitely hard when a child has many things going on. In fact, I wish my daughters' joints glowed red when they're inflamed and green when it was just chronic pain (which is equally miserable and awful, but needed to be treated differently).

It's important to know IF it is inflammation, because you need to avoid steroids and losing out on drugs if possible. There is no point in switching Remicade or upping it if it is EDS causing the pain.

My older daughter, for example, recently saw an AS researcher who pointed out inflammation in her knees (swelling that we hadn't noticed) and loss of mobility in her back (he does measurements yearly, since she is in a study). She does have daily SI joint pain, but hadn't been complaining a lot recently.

Since she is generally doing ok on Humira (not a lot of pain with rest/inactivity or morning stiffness), we will do an MRI of her SI joints to see if there is active inflammation. If there is, depending on how bad it is, we will think about switching Humira. She could try Cimzia or IV Simponi or Cosentyx.
 
Interesting, I guess our rheumatologist feels different. :yfaint:
Just repeating what I was told by a doctor.
Grace's xrays and one mri's did show swelling in the center of the joints.
I forget the name.
The doctor can feel it, even though I can't see it.
Multiple joints have been this way over time.

I'm glad I said no for now. To many variables!
 
Another option would a second opinion before changing meds. I understand that is not easy since some states only have one ped. rheumatologist.

Many families drive hours to see a second opinion. We have traveled many times - to Boston, to Houston, to Cleveland - it is definitely tough but has usually been worth it.

The swelling in the middle of her joint would be probably be an effusion - fluid caused by inflammation. X-rays can also sometimes show soft tissue swelling.

Good luck with whatever you decide! Waiting and seeing is not a bad idea, until you are sure it's caused by inflammation.

The best thing to do is separate out the variables until you find the actual cause of the pain.
 
No one is saying to ignore your doctor
But rather to ask your child's doctor a lot of questions so you can better understand what is going on jia /actual type of jia and eds
And what is causing what
Without conversations things that need to happen may not happen
Inflammation needs treated
Pain needs treated (even if it's exercise )
But asking the hard questions an help you understand what it is
 
Some good news:dusty::dance::dusty::dance:
Meant with the GI yesterday and......
All looks well with Grace.
Last stool test looked good, no blood in bms, no cramps, appetite is OK and labs look good.
She has now reached over 4 foot. Her weight is good and stable.
We plan to scope again in a year.
So baring any flare ups, she is pleased with her progress.

Some not so good news:(:voodoo::(:voodoo:
Grace's jia and Ehlers-Danlos is not behaving.
Meant with her rheumatologist today.
Grace has been having bad head aches....daily.
Tried meds to help (she's on Topamax now).
Her docs want to investigate tethered cord or Chiara (don't know how to spell it:) ) malformation syndrome.
I hope is not these but want to find out. They're not unheard of with Ehlers-Danlos.
So we talked about treatment.
They feel her jia is still active upon physical. I agree.
Around 2 weeks Remicade gIves out.
We talked at length about the merit of giving half doses of Remicade every two weeks:eek2:
They have 11 patients doing this at the clinic.
They have seen great success with 10 of these patients.
The 11th also had c-diff and some other problems going on.
So this child is still on it but they're not sure if it's working as good yet.
I decided to give it a go:kiss:
We're hoping in 6 months time to switch her back but they do have another patient that has been doing this for over 2 years. :eek2:

So as always we take the bad with the good!
I focus on the good and pray for the bad to get better.

I'm also homeschooling my kids this year. Lol
So hopefully I don't mess them up. ...more. :ghug:

Any homeschooling moms out there?

Hugs to you and yours
 
Wanted to add that remicade given every two weeks is because of her jia not ibd!
Rheumatologist use Remicade differently for jia.
 
Good luck with Remicade. Hope it works for Grace.

We did up to 20 mg/kg of Remicade every 4 weeks. They wouldn't do every 2 weeks at our hospital, but they were ok with upping the dose (called "high dose Remicade"). There are a few trials of high dose Remicade in JIA, and it worked well for some kids.

It didn't work so well for my daughter, unfortunately, but every kid is different.

Hope the more frequent infusions work for her!!
 
Glad you had a good ibd appt.
Is there any reason why you wouldn't change from remicade ?
Since it's not holding her and at high dose /high frequency with minimal benefit
Increases a lot of risk

That's what we were told which is why Ds was change to Stelara for JSpA (not ibd)
From humira


Fingers crossed it works
 
I'll try to explain best I can to what they told me.

In kids like Grace they feel they go thru/burn Remicade to fast.
Instead of lasting 4 weeks they only last 2 and then nose dive down for two weeks
So a bad cycle starts acting like a roller coaster.
Up and down, never allowing the body to heal properly.
They've seen kids heal better at every two weeks.
Because in in theory they always have some Remicade in their system.
Hopefully this will stop the cycle or roller coaster.
Her rheumatologist and us feel that is worth a try.

Remicade has done wonders and hopefully it still will.

Hopefully that helps answer your questions.
 
What dose will she be given every two weeks Farmwife?? Just curious. I feel like it's the same as what we did - except you're increasing the frequency of the infusions vs. increasing the dose.
 
She was receiving 10 every 4 weeks but now it will be 5 every 2 weeks.
However, rheumatologist will ask insurance to approve 6.5 every two.
That way we can play a little bit.

Ya, insurance should be fun.
 
M was admitted to start high dose Remicade, partially because she was REALLY flaring and needed IV steroids, and partially to get around insurance.

We did not have any trouble with her subsequent infusions - the ones does after the admission, outpatient.

You might have more trouble with getting it approved every 2 weeks vs. increasing the dose - as far as I can remember, I haven't seen studies on doing it every 2 weeks. But worth a try, since they've been able to get it approved for other kids.
 
Farmwife we did something similar with humira for about 6 months
Humira at max dose every 5 days

It still eventually ended up burning through that
And needed to change types of drugs

We were told the body becomes saturated with anti tnf after awhile in these kids
More anti tnf no longer works because of this
So they are now switching to different types of drugs
To hopefully not burn through so fast

Ds just started so it's still all theory
Will let you know once we know more
 
That was our issue with high dose Remicade too. M's first anti-TNF (Humira) worked very well with MTX...after that, we didn't really have much success with them for her JSpA (now AS). We tried 3 others - Remicade, Enbrel and Simponi. They all worked to some degree, Remicade quite well for a little while, but the effects didn't last.

We tried very high doses, all sorts of combinations with immunomodulators - MTX, Imuran, Sulfasalazine, MTX + Sulfasalazine, Imuran + Sulfasalazine, Arava.

Still only partial response for her AS.

But weirdly enough, her IBD has continued to respond well to anti-TNFs.
 
Farmwife said:
I'm also homeschooling my kids this year. Lol
So hopefully I don't mess them up. ...more. :ghug:

Any homeschooling moms out there?

Hugs to you and yours
Click to expand...

Hi! I was a homeschooling mom for many years especially for my eldest two boys 20 and 22 now. At the time I loved it. I went nuts on curriculum and taught them some Latin, Greek, piano, all the regular stuff plus field trips whenever we wanted. We had a great home school community that planned events together and sometimes classes for the kids (like a regular gym time, and french classes). One of the boys LOVED it and wanted to keep on until grade 10. My other son hated it and went to school starting with grade 5. Very personality dependant. When they entered the school system they were well ahead of their peers in math and reading and still thank me for my heavy emphasis on literature. They are well adjusted. One is graduating from an aircraft maintenance engineer program top of his class and the other taught himself how to sail, lives on a boat and works in the movie business.
I have often thought about trying it again but not with all the kids (5 at home). I miss those days but the kids enjoy school as it is and I am older with less patience, lol. I hope you love it and it gives Grace flexibility to rest and be as well as she can be.
 
Hi Farmwife,
We homeschool and love it. I have five kids total and my oldest two graduated homeschool. We use an online school program called time4elarning. The kids really like it. Then we also do a lot of reading as well and some extra workbooks.
Please feel free to PM me with any questions.
Caitlyn has dealt with a lot of headaches as well. It is actually very common in IBD
And can be a sign of a flare up coming on. I read an article that sometimes allergy meds like Claritin can help. Our doctor said it certainly can't hurt and we started her on Claritin and she has been complaining a lot less of headaches.
Caitlyn also has EDS and I know that on the EDS forums people do talk about some of them having tethered cords so it definitely is something to rule out. Usually done with an MRI.
Wishing her luck with the new schedule for remicade.
 
Hi Farmwife,

I started homeschooling last year for my son. He was very ill from July through December(diagnosed with Crohns Sept. 2016) and there was no way he could have gone to school everyday. He actually goes to school 2 days a week and I homeschool the other 3. He and I both love it and it has worked out well for the whole family!

I hope your Grace is feeling better soon!
 
Thanks everyone.
I'm using the same curriculum that the private school used.
Hopefully that will make the change smother for my two.
I'm still surprised how encouraging the doctors have been.
Even going so far as to say that is probably the best for Grace. :ywow:
Good grief, that's not the only reason I'm homeschooling. :eek:


A question for those of you that have kids dx with AS ( Maya142 and mlp )

What ages was your kiddos dx with AS?
 
Farmwife
Ds does NOT have an AS dx

Anytime a child with IBD develops arthritis
It is categorized under the broad JSpA associated with inflammatory bowel disease dx

Which of course falls under the even more broad JIA umbrella

Officially he has
Type II POLYARTICULAR juvenile spondyloarthritis associated with inflammatory bowel disease

Joints /tendons affected
Knees
Wrists
Ankles
Hands (all fingers )
Multiple Toes
Heels
Hips (possibly)



The only time they switch the name to JIA is if the arthritis is dx before the ibd
Otherwise ibd is the primary disease
And
Any Arthritis is JSpA as secondary

Ds was dx at age 9--10 I think

Maya142 Dd has JAS
 
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.
 
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.
 
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.:stinks:

So I guess they have their bases covered.
 
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 ;).
 
Fw, I just happened to see this article about cervical spine arthritis - have they done an MRI on Grace?

https://ped-rheum.biomedcentral.com/articles/10.1186/s12969-017-0173-1

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.
Click to expand...

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.
Click to expand...

It could explain her headaches...
 
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.
 
Good news, no visible damage on the xray in her neck.:dance:

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

I've ordered the school stuff and Im more excited than the kids. Lol
Grace just want to get a laptop.:D
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.
 
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.
 

Latest posts

Back
Top