# Another year older and a new Dx.



## Farmwife (Jan 28, 2017)

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!


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## CarolinAlaska (Jan 28, 2017)

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.


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## pdx (Jan 28, 2017)

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.


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## Maya142 (Jan 28, 2017)

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.


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## Sascot (Jan 28, 2017)

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


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## Pilgrim (Jan 28, 2017)

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.


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## my little penguin (Jan 28, 2017)

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


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## Farmwife (Jan 29, 2017)

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.


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## my little penguin (Jan 29, 2017)

https://www.marfan.org/download/file/fid/319/EDS Hypermobility Type.pdf

Benign  in meaning it's not the one involving the heart /potentially fatal 
Benign in It causes pain , skin issues and joint problem 
Which similar to JIA/JSpA require PT/Pain meds to strengthen musucles around the loose tendons near joints 

Hope they get her on a good PT program soon
And into a chronic pain program


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## Maya142 (Jan 29, 2017)

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.


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## my little penguin (Jan 29, 2017)

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


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## Farmwife (Jan 29, 2017)

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.


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## Maya142 (Jan 29, 2017)

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:.


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## my little penguin (Jan 29, 2017)

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


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## Optimistic (Jan 30, 2017)

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!


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## polly13 (Jan 30, 2017)

Happy Birthday Grace - sorry to hear about diagnosis


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## Jmrogers4 (Jan 31, 2017)

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.


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## Farmwife (Feb 28, 2017)

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!


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## Maya142 (Feb 28, 2017)

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.


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## my little penguin (Feb 28, 2017)

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


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## Maya142 (Feb 28, 2017)

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.


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## Farmwife (Feb 28, 2017)

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.


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## Maya142 (Feb 28, 2017)

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.


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## Farmwife (Feb 28, 2017)

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.


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## my little penguin (Feb 28, 2017)

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


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## Farmwife (Mar 16, 2017)

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.


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## Maya142 (Mar 16, 2017)

Glad it worked!! Nerve pain medications are much better for her  and they do actually work better for amplified pain.

Way to go Grace!!!


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## CarolinAlaska (Mar 20, 2017)

I'm glad she is finding things that work for her.


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## polly13 (Mar 21, 2017)

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


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## Farmwife (Mar 23, 2017)

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


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## my little penguin (Mar 23, 2017)

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


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## Tesscorm (Mar 23, 2017)

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:


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## pdx (Mar 23, 2017)

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:


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## Maya142 (Mar 23, 2017)

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.


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## DanceMom (Mar 23, 2017)

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.


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## polly13 (Mar 24, 2017)

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.
> ...


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.


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## Farmwife (Mar 24, 2017)

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.


Thanks,  she's already treated with benadryl,  Tylenol  and fluids.
I'll find ot if the will add the steroids now.


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## DanceMom (Mar 24, 2017)

Farmwife said:


> Thanks,  she's already treated with benadryl,  Tylenol  and fluids.
> I'll find ot if the will add the steroids now.


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.


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## Farmwife (Mar 24, 2017)

Thanks, I didn't know about the IV Benadryl.


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## my little penguin (Mar 24, 2017)

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


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## DanceMom (Mar 24, 2017)

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
> ...


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.


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## Farmwife (Apr 25, 2017)

: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?


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## Maya142 (Apr 25, 2017)

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!


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## pdx (Apr 25, 2017)

Farmwife said:


> :dusty: No reaction to Remicade  this time:dusty:


That's such great news!  Thanks for the update!


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## Farmwife (Apr 25, 2017)

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.


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## Farmwife (May 5, 2017)

Quick update: 
:dusty:Grace just hit the 28th percentile for height!:dusty:
Highest she's ever been! :thumleft:

THANK YOU REMICADE!


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## Maya142 (May 5, 2017)

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

Did you ever get a gastric emptying test scheduled FW?


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## Sascot (May 6, 2017)

Great news!


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## pdx (May 6, 2017)

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!


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## kimmidwife (May 6, 2017)

That is great news and glad the remicade went smoothly too! Finger crossed for her!!!!


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## Jane and Nick (May 7, 2017)

Woo hoo ! That's wonderful news.


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## Farmwife (Jul 16, 2017)

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.


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## Maya142 (Jul 16, 2017)

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.


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## my little penguin (Jul 16, 2017)

Never heard of every two weeks for remicade 
Would assume a med change like Maya142 
There are other options 

Good luck


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## Maya142 (Jul 16, 2017)

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?


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## Maya142 (Jul 16, 2017)

Also, have they tested for antibodies recently?


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## pdx (Jul 17, 2017)

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.


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## Maya142 (Jul 17, 2017)

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.


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## Farmwife (Jul 17, 2017)

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?
> 
> ...


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?


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## Farmwife (Jul 17, 2017)

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.
> 
> ...


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.


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## Farmwife (Jul 17, 2017)

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?


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## Maya142 (Jul 17, 2017)

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?


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## Maya142 (Jul 17, 2017)

> 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?


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?


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## Farmwife (Jul 17, 2017)

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.


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## Maya142 (Jul 17, 2017)

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.


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## Farmwife (Jul 17, 2017)

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.
> 
> ...


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:


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## Maya142 (Jul 17, 2017)

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.


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## Farmwife (Jul 17, 2017)

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.


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## Maya142 (Jul 17, 2017)

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.


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## my little penguin (Jul 17, 2017)

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


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## Maya142 (Jul 17, 2017)

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.


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## Farmwife (Jul 17, 2017)

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!


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## Maya142 (Jul 17, 2017)

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.


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## my little penguin (Jul 17, 2017)

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


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## Optimistic (Jul 18, 2017)

I'm following this with interest as I'm learning about EDS. Hope Grace makes some progress.


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## Farmwife (Aug 22, 2017)

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


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## Farmwife (Aug 22, 2017)

Wanted to add that remicade given every two weeks is because of her jia not ibd!
Rheumatologist use Remicade differently for jia.


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## Maya142 (Aug 22, 2017)

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!!


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## my little penguin (Aug 22, 2017)

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


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## Farmwife (Aug 22, 2017)

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.


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## Maya142 (Aug 22, 2017)

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.


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## Farmwife (Aug 22, 2017)

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.


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## Maya142 (Aug 22, 2017)

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.


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## my little penguin (Aug 22, 2017)

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


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## Maya142 (Aug 22, 2017)

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.


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## Pilgrim (Aug 22, 2017)

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?
> ...


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.


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## kimmidwife (Aug 22, 2017)

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.


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## Jelly loves Peanut butter (Aug 23, 2017)

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!


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## Farmwife (Aug 23, 2017)

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.  


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

What ages was your kiddos dx with AS?


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## my little penguin (Aug 23, 2017)

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


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## Farmwife (Aug 23, 2017)

Sorry mlp.
Still trying to learn about all the ins and outs of JIA.
Thanks for the info. 

So if the xrays show damage in her neck and her rheumatologist deems it arthritis,  than its called JSpA? I think she already has that on one of her dx pages. 
Good grief I can't keep up.


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## Maya142 (Aug 23, 2017)

JAS means that there is damage in the sacroiliac joints on x-rays. That is what you have to have to have an official AS diagnosis, whether adult or child.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But spinal involvement, especially the cervical spine, usually comes later.


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## Maya142 (Aug 23, 2017)

I wanted to add - you had mentioned chiari malformation earlier - there can be associated neck issues with that.

https://www.ninds.nih.gov/Disorders...on/Fact-Sheets/Chiari-Malformation-Fact-Sheet

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

Generally you need an MRI or CT to see it, but there can be bony abnormalities associated with it.


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## Farmwife (Aug 24, 2017)

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.


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## Maya142 (Aug 24, 2017)

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 .


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## Maya142 (Aug 24, 2017)

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.
> ...





> Cervical spine arthritis is a well-recognized complication of juvenile idiopathic arthritis (JIA), usually presenting in patients with systemic or polyarticular forms of the disease [1]. More commonly, the upper cervical spine is affected because the atlanto-occipital and the atlanto-axial joints are synovial and are thus primary targets for rheumatic inflammation [2]. Early detection of cervical involvement is essential for identification of children that require more aggressive treatment including early introduction of biologic therapy. Untreated chronic inflammation of the cervical joints can lead to morphological changes and functional impairment, which can be even life-threatening due to instability and potential risk of spinal cord injury.
> 
> Clinical signs and symptoms of cervical spine arthritis may include neck pain, stiffness, torticollis, limited range of motion (LROM), headache, facial and ear pain, and signs of cervical myelopathy. Absence of clinical symptoms does not exclude subclinical inflammation and imaging abnormalities of cervical spine [3].
> 
> Imaging modalities used in assessment of cervical spine arthritis include radiography, computer tomography and magnetic resonance imaging (MRI) [4, 5, 6]. Radiography has been most evaluated imaging modality for assessment of cervical spine lesions and is particularly useful for evaluation of malalignment, functional impairment, morphological changes of bones, and vertebral body growth disturbances [3, 7, 8, 9]. In general, MRI is the method of choice in evaluation of cervical spine arthritis and is most useful in detecting synovitis with hypertrophic, enhanced synovia and pannus formation, joint effusion, erosions, bone marrow edema and possible neural structure compressions [10, 11]. The diagnostic accuracy and predictive value of conventional MRI in JIA patients with axial joint involvement have been poorly investigated [12]. The role of MRI in detecting early changes in cervical spine in JIA was first evaluated in a Turkish study showing higher sensitivity of MRI compared to radiography for detection of erosions in children [13]. More recently, a German study evaluating MR changes of cervical spine arthritis at diagnosis and response to treatment in 13 patients with JIA was published [14]. It was concluded that close MRI monitoring of these patients appears to be sensitive tool for early diagnosis and may help to detect further disease progression and complications.


It could explain her headaches...


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## Farmwife (Aug 25, 2017)

Xrays first because insurance makes us and then onto mri.


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## pdx (Aug 27, 2017)

Really hope that the new infusion schedule helps! 

I home-schooled my oldest daughter in 7th grade, after she was first diagnosed. I had never even considered home-schooling prior to that, but my daughter and I actually enjoyed it. She wanted to go back to school after that year, but I like knowing that it's something we could go back to if we ever needed to.


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## Farmwife (Aug 29, 2017)

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. 
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.


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## Maya142 (Aug 29, 2017)

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.


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## Farmwife (Aug 30, 2017)

I had tmj.
 I ended up having the surgery to realign the jaw. 
It's obvious I probably have eds but haven't gone to the doc yet. 
That's a good point and will text her rheumatologist to ask what they think? 

Mri is to rule out chiari or tethered cord.


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## Maya142 (Aug 30, 2017)

So TMJ is just a short form for temporomandibular joint. Everyone has a TMJ  (two actually).

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

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

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

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

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

M now needs surgery to clean out her temporomandibular joints. You would need to see an oral and maxillofacial surgeon for Grace if she does end up having TMJ arthritis. Your rheumatologist can refer you if necessary.


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## Farmwife (Aug 31, 2017)

Thanks Maya
They tried everything on my jaw before the big surgery but nothing helped until they realigned it. I had 8 minor surgeries before hand. 
Now it's much better.
I hope it goes well for your girl. 

I contacted her rheumatologist about this issue. 
Waiting to hear back. 
Since there are already going to do the mri on her neck and base of her skull, they can add the jaw I would think.


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## Maya142 (Aug 31, 2017)

I would guess they can add it. Might be a very long MRI though, Grace will have to be in there and lie still for quite a while. I hope they have movie goggles for her!


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## kimmidwife (Aug 31, 2017)

Wishing her the best with the MRI!
Glad you found a local homeschool group. We love our local groups.


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## Farmwife (Sep 1, 2017)

:dance:Rheumatologist approved the mri for the jaw also.
Maybe they've learned to just give me what I want and I'll go away.  :rof:

Just kidding,  her rheumatologist is amazing. 


We're  waiting for her pain doc to call back. 
I want to stop her Topamax because it's not helping much with her headaches and her personality has changed. ...not for the better. :ymad:


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## my little penguin (Sep 1, 2017)

Farmwife
Is herJIA under control ?
I ask because Ds will get daily headaches and migraines when any of his autoimmune diseases are flaring 

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

Once we got the flares under control the headaches stop

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

They can help


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## Farmwife (Sep 1, 2017)

Her jia has never controlled.
No neurologist yet. No did said shying yet about going to one
Her pain doc is the one dealing with the med side of things. 
This is just do new for her and sudden.

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


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## my little penguin (Sep 1, 2017)

Pediatric Neuro is best to handle chronic headaches/migraines 
They know the why 
And which meds work best for chronic headache


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## Maya142 (Sep 1, 2017)

Does the rheumatologist have a plan B if Remicade every 2 weeks fails? I'm asking because if she's never been in remission so far, you may need to try a different kind of biologic.


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## Farmwife (Sep 2, 2017)

Their is a plan b but we've seen great progress with Remicade.
I believe she was almost in remission before the insurance withheld it for 3 months.:ymad: 

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

I haven't been this nervous about a test in awhile.


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## Maya142 (Sep 2, 2017)

Yes, I think treatment will completely change if she needs surgery for a chiari malformation or tethered cord .

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

Fingers and toes crossed for Grace - keep us updated.


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## kimmidwife (Sep 3, 2017)

I am glad they approved for the MRI. Finger crossed for answers Caitlyn also has an issue with headaches from inflammation. It was recommended we try an allergy medicine as they say that can help. We stared he on Claritin and she has been having much less headaches.


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## Farmwife (Sep 3, 2017)

Kim, she's been on allergy meds for years.  Zertec woresults  best for Grace but over the years we've tried different ones.  Thanks


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## Farmwife (Sep 27, 2017)

Grace stated her biweekly Remicade today. 

Does anybody here do rapid infusion?

I haven't asked  her rheumatologist yet,  just wondering. 
It'd be nice not to be here half a day ever other week.


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## richard1353 (Sep 27, 2017)

Farmwife said:


> Grace stated her biweekly Remicade today.
> 
> Does anybody here do rapid infusion?
> 
> ...


Don't worry  about Grace because Remicade can be effectively for the disease!


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## Jmrogers4 (Sep 27, 2017)

Jack has done them for the last 3 years except for the last one (but I've already vented about that).  We love them.  It was 15 minutes for the solumederol and exactly one hour from when they start the remicade.  We were usually there for about an hour and a half, just depends on how long the pharmacy took since dosage is weight based they would weigh right when we got there and order meds.
We always had his appointments at 3:00 and were out before 5:00 as opposed to appointments at 12:30 and out by 5:00.  He has never had any reactions so it has worked out really well for him.


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## kimmidwife (Sep 27, 2017)

Good to hear as we may be looking at remicade for our younger daughter.


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## Catherine (Sep 28, 2017)

Headaches/jaw pain if not TMJ disorder, maybe look at trigeminal neuralgia.


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## Farmwife (Oct 4, 2017)

So my children and I got our flu shots yesterday.  
Today...... all of us have flu like symptoms, to the point Grace is laid out on the couch. 

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


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## my little penguin (Oct 4, 2017)

You Can't get the Flu from the flu shot
It's a dead virus 
The flu shot can however take up to two weeks to become effective so you can still get the flu during those two weeks

You can also have a reaction to the flu shot (egg allergy )
And other reactions so it would be good to call her pcp


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## pdx (Oct 4, 2017)

Everyone in my family always feels a little yucky the day after the flu shot--headachy, sore muscles.  It goes away within a day for us.


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## Catherine (Oct 7, 2017)

It's been a very bad flu season in Australia.

Mainly in the elderly and young children.


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## Farmwife (Nov 21, 2017)

Grace will be switching from Imuran back to mtx. 
Her rheumatologist is wondering if Imuran is causing some of her issues like head aches, low immune system  and  fatigue. 


My question is.......
Can meds start having side effects after years of being on them? 

She'll be seeing a neurologist in the new year. 
But if this could help,  that would be amazing!


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## my little penguin (Nov 21, 2017)

Is her inflammation in remission for all her issues ?
If not we see headache fatigue etc..,until those are under control 
Have they looked at ivig ?


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## Farmwife (Nov 21, 2017)

Lol,  I'm starting to think the world  of remission is just a mythical land she'll never reach. 
No not in remission yet.  
But is doing better jia wise. 
Her ibd is still well controlled.  

No mention of ivig.


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## Maya142 (Nov 21, 2017)

MTX should be better for her joints than Imuran. Imuran is rarely used to for JIA now, though it is used for Lupus sometimes. 

MTX is considered to be safer. 

My daughter had issues with infections on Imuran + allopurinol. Many throat infections - I think it was 6 or 7 in one year that required abx. One was a staph infection - staph infections are uncommon in the throat. 

The abx for staph led to CDiff which led to a Crohn's flare.

So it's safe to say, we are not big fans of Imuran, though my daughter is back on it since she can't take MTX.

We haven't had any headaches with Imuran though.

Fatigue could easily be from active JIA.

Really hope the switch to MTX works for her. Will she be on pills or injections? Make sure she is on folic acid too.


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## Farmwife (Nov 21, 2017)

Pills this time around. 
Her doc just warned us to keep track of her stomach issues  If that flares, she'll switch to injections. 
Yes,  to the folic!


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## pdx (Nov 21, 2017)

Hope the switch helps!


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## Pilgrim (Nov 21, 2017)

We were talking to the Humira people (in relation to headaches) who said yes that side effects can happen years later. But not sure about with Mtx or Imuran. 
I hope the switch does the trick for Farmgirl.


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## CarolinAlaska (Nov 29, 2017)

Farmwife said:


> Grace will be switching from Imuran back to mtx.
> Her rheumatologist is wondering if Imuran is causing some of her issues like head aches, low immune system  and  fatigue.
> 
> 
> ...


J just had to go off 6MP after years of being on them due to immunosuppression, so I would say a resounding yes.


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## Farmwife (Nov 29, 2017)

Thanks Carol, 

So here's a question I don't want to ask but...... 

For two weeks or so (before the change to mtx)
Grace had been burping and passing gas a lot. 
A couple mentions of  stomach pain but not constant. 

Would this make any of you concerned?


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## Tesscorm (Nov 29, 2017)

Given that it happened before the change in meds, I would watch and wait...  could just be a fluke and not directly crohns-related (although, it is what jumps into mind right away ).  

But, even if crohns-related, it could be that the change of meds will help!


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## Farmwife (Nov 29, 2017)

See, this is why I ask. Apparently I can't think straight or use common sense when it's my own kid. LOL


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## CarolinAlaska (Nov 29, 2017)

Those are normal things in our house, so I wouldn't be concerned, but if they are new for Grace, I could see where it would be concerning to you.  It may be that she was eating something she didn't agree with (in our house it is typically a meat or gluten).  I've also heard of that happening with gastroparesis.  If the symptoms have resolved now, I wouldn't worry about it...


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## Farmwife (Nov 29, 2017)

They are new for Grace. Those are two issues that never seemed to bother her till now.
She's on no new food but that doesn't mean she can't be getting a new sensitive to one.


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## my little penguin (Nov 29, 2017)

Also those things can happen if her system is taxed 
So say on a normal day no issue with chips /salsa 
But when she is flaring at all pick a disease 
She can’t handle those 

We try not to worry about those things 
They tend to resolve or we see more worrying in symptoms


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## Maya142 (Nov 29, 2017)

I agree it could be related to a food - a food diary might help. For example, my daughter is lactose intolerant and lactose causes bloating and nausea.

I'd just wait and watch...if you see more symptoms, then I'd let her GI know.

Simethicone is OTC and can help with gas. My daughter's GI allows her to take it as needed.


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## Farmwife (Dec 13, 2017)

Great  So now she had side pains in her abdomen :yfrown:

Just a reminder of her past.... 
Her rheumy stopped her Imran and added oral mtx about 3 weeks ago. 
She had been on mtx injections years ago but dropped for Imran. 

I called the nurse and asked her to switch her from oral mtx and to mtx injections. She's had 3 Friday night oral mtx and each time she's sick with nausea, fatigue and even worse appetite. It last most of the week end.
Plus she's still dealing with stomach issues. 

Is it too much to hope for side effects?  I'd rather real with side effects.


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## Maya142 (Dec 13, 2017)

My daughters both did MUCH better with the injection vs. the pills. In my older daughter's case, the switch from pills to injections helped enough that she has been on MTX for years with only minor side effects - fatigue the day after the shot and sometimes mild nausea. She does take 2 mg of folic acid a day and has Zofran for the day after the shot, but rarely uses it.

My younger daughter did improve when with switching to the shots,  but not enough. She still had severe nausea and dizziness and sometimes vomited several times. She was so nauseous and dizzy that she could not get out of bed at all for 2 days a week. We tried lots of tricks to make it work but she was still just miserable all weekend.

Eventually, she begged to stop it and her rheumatologist switched her to Arava. Which works well for her peripheral joints but doesn't work for her IBD.

Switching to injections should also improve MTX absorption, which may help with the IBD issues.

Have you done a FC recently to see if it's IBD related stomach pain or something else? When was she last scoped?


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## Farmwife (Dec 13, 2017)

No fc test as that doesn't show much {never had even when a scope showed differently.

Scopes was a year and a half..... I think.
MRI a year ago.


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## Maya142 (Dec 13, 2017)

Maybe she is due for scopes to see what is going on? Something to ask about if her belly pain does not subside after some time on the MTX injections.


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## Pilgrim (Dec 13, 2017)

When H started mtx injections, it was 15mg, she was just over 60lbs. She had the same side effects, nausea, vomiting, feeling awful. We did it on Fridays and lasted all weekend. Zofran wasn't much help but on advice from this wonderful forum we went to 2 mg folic acid and then she was ok. This was after 6 weeks so possibly her body just adjusted.
We're oral now, and she is fine with that also.


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## Farmwife (Dec 13, 2017)

Thanks guys.
She's on 20 MG now at 70lbs.

When  she had it before she was at 10mg 
but that was about a year and a half of maybe 2 years ago
 The injections never bothered her before.  I hope it doesn't now.


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## my little penguin (Dec 13, 2017)

Ask about leucovorin
It’s a rescue drug given 12 hours after mtx 
It can lessen the symptoms
Ds got very ill on 25 mg injections even with leucovorin and higher dose folic acid -2 mg per day 
Doc switched him to 20 mg orally 
No issues 
So it’s defin very individual 
Good luck


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## Maya142 (Dec 13, 2017)

We also did Leucovorin - rheumatologists seem to use it more than GIs (probably since they use MTX more).

It really helped both my girls. It's generally used with higher doses of MTX since it is folinic acid - a rescue drug for MTX and makes MTX slightly less effective (since it helps side effects by reversing the effects of MTX to some degree). 

When very high doses of MTX are given as chemotherapy, folinic acid is used (also in much higher doses) to prevent some of the nasty side effects.

We only used it when my girls got to 20-25 mg MTX.

For Zofran, we found that using the oral disintegrating tablet worked much better than just the regular pills.

We also upped to 2 mg of Folic acid daily and gave the injections before bed.


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## pdx (Dec 14, 2017)

Sorry your girl is dealing with so much right now. To me, the nausea, fatigue, and lack of appetite sound like mtx side effects, but the abdominal pain might be IBD. I know that mtx can take a while--sometimes months--to build up to therapeutic levels, so it may take longer for it to start working well.

Like others have already commented, going up to 2mg of folic acid daily really helped my daughter's mtx-induced nausea.


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## Farmwife (Dec 16, 2017)

:dusty::dusty:Happy Update:dusty::dusty:

I gave Grace her injection of mtx last night and other than some dizziness she felt great (well for her,  great).
So much better than the pills.:thumleft:

So for Christmas this year Grace only asked for a baby doll.  That's it! 
I go to Toys-R-Us and get bombarded by a hundred different dolls with  ACCCCESSORIES:shifty-t:  
some of the accessories cost more than the actual item.
So after I walk in and look and say NO WAY! 
I walk  out with an 16 inch baby doll , 
white wooden bassinet with storage underneath,  
stroller  (it was on sale,  so why not), 
baby carrier, 
two changes of clothes plus a winter coat for the doll because it's winter up here, :yfaint:
high chair and fake foods and bottles (because you know the baby has to live)

Ya,  a couple hundred dollars later.....I walked out of the store trying to figure out how I can word it to my hubby not to have me committed! :ylol:


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## kjb (Dec 16, 2017)

Hi Farmwife,

Glad to hear that Grace is adjusting well to the new meds!

Even though you might feel as though you should be committed, I think it shows just love and commitMENT.

You know that it is going to make little Grace so happy - and so you just do it. You can worry about the credit card bill later right! The winter coat for winter syas it all!!

I hope that she has a wonderful time playing for hours with her new doll - no doubt there will be plenty of cold Michigan days to stay indoors and just play. It's kind of weird as it is going to be 38 degrees C (100 F) here on Wednesday so we are doing new bathers and beachy things for Xmas!!

Poor little Grace has had a bugger of a year. I hope that 2018 is a much better one for her and all of the family.

Merry Christmas!

K


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## pdx (Dec 17, 2017)

Glad the shot worked so much better for her! And she is going to be one happy kid on Christmas day!


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## kimmidwife (Dec 17, 2017)

Glad to hear!!!! Grace is going to love it!!! So excited for her!!!!


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## Farmwife (Dec 18, 2017)

Quick question
Her doc has said for her labs to be taken every 4th infusion (every two months).
I'm not happy with that and want to request every 2nd infusion (once a month). 

Is that reasonable? Or perhaps I'm being over sensitive?


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## my little penguin (Dec 18, 2017)

Why would she need labs every month ?

Every 2-3 months is the standard something med every 4 months 
Currently they are doing Ds labs every month prior to ivig infusion but currently he has some rogue numbers -uncharacteristic for him 
And started  getting not one but two new therapies after a very long flare 

Even then GI was ok with waiting 3 months .
Rheumo just wanted every month till the flare improved or numbers stabilize


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## Farmwife (Dec 18, 2017)

She's  always had every month draws. Always.
Plus she restarted mtx. I forget how often they draw labs for that. 
*
Interested to hear how often your children get lab draws*


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## my little penguin (Dec 18, 2017)

Mtx  every two months is standard at first 
Ds until ivig was every 2-3 months
Basically just prior to his GI Appt 
of his GI appt was 4 months out (rare ) then 4 months 

Are her labs stable ?


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## crohnsinct (Dec 18, 2017)

First time my girls started mtx, labs were after one week, then two, then 4, then just at Remicade infusions. O stopped mtx and went back to it and the second time we just pulled labs with regular schedule.    

Both girls infusion schedule was every two months so that was when they got labs.  But then O went to college and did home infusions and they don't pull labs so GI said O.K. to move to every other infusion so every 4 months.


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## pdx (Dec 18, 2017)

We get labs every infusion, so every 6 weeks. Nutrition labs are done every 6 months, and Remicade levels as needed, usually once or twice a year.


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## kimmidwife (Dec 18, 2017)

Our girls get them about every two months.


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## Maya142 (Dec 19, 2017)

My younger daughter gets them every month to 6 weeks, but that is because she hasn't been stable in forever. And also because she has a LOT of other medical conditions that require close monitoring, so we end up doing them about every month.

The only time they are more frequent is when we are adding a new med - like Imuran. We just added it and have just moved from weekly blood work to every other week.

When she is stable, I hope we will move labs out to every 3 months. She is on about 19 meds though, so I'm not sure if that will ever be allowed!! It is a pain because her veins are really scarring.

Her sister is on a biologic + MTX but is relatively stable so gets blood work done every 3 months. She is only on a few meds - MTX + biologic + NSAID + Prevacid regularly. She takes a couple more meds as needed.


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## Farmwife (Dec 19, 2017)

Wow,   I had no idea that 4 weeks wasn't the norm for blood draws.
Glad I asked! 

Maya I'm assuming like your girl, Grace is/was monitored more closely because of all her health needs and meds.
I've never asked the docs why because I never knew it wasn't normal. 
Now ibd and jia wise she seems to be heading in the right direction. Not there yet. Perhaps this is why he wanted to back off.


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## Maya142 (Dec 19, 2017)

It is actually not so much the IBD/AS as it is the sheer number of specialists and conditions she has. Because she has so many specialists someone or the other orders blood work about every month.

Her rheumatologist does not believe it's needed that often - even though we are tracking her CRP closely because it has been high for a year. She would do it every 2-3 months if it were only her.

Due to the adrenal insufficiency (which can be life-threatening) now endocrinology seems to be doing blood work pretty often and that her endo has become one of her main specialists (and now actually, she has two endocrinologists for different issues).

Add in orthopedists - she has 4 for different joints - hip, jaw, foot and ankle :ybatty: and has had two surgeries this year - and pain management and cardiology and interventional radiology and so on...it adds up quickly.

My hope is eventually we will get her stable and be able to get rid of some specialists!! And hopefully back off on blood work.


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## Farmwife (Dec 19, 2017)

So does M have Addison disease? 

Grace's pain doc wanted regular labs because of her meds he's rescribed. I guess I should and all his opinion.  Didn't even think of that.  There's was concern of vascular eds but I never thought we've had that. 
All things to think about.


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## Maya142 (Dec 19, 2017)

Secondary adrenal insufficiency is a bit from Addison's - it's usually due to long-term use of steroids. Addison's disease is primary adrenal insufficiency, when the adrenal glands are actually damaged for some reason.

Secondary adrenal insufficiency may go away - but it takes a long time for the adrenal glands to recover (months to years). The longer your kiddo has been on steroids and the more steroids, the longer it takes for their adrenal glands to recover.



> Adrenal insufficiency can be primary or secondary. Addison’s disease, the common term for primary adrenal insufficiency, occurs when the adrenal glands are damaged and cannot produce enough of the adrenal hormone cortisol. The adrenal hormone aldosterone may also be lacking. Addison’s disease affects 110 to 144 of every 1 million people in developed countries.1
> 
> Secondary adrenal insufficiency occurs when the pituitary gland—a pea-sized gland at the base of the brain—fails to produce enough adrenocorticotropin (ACTH), a hormone that stimulates the adrenal glands to produce the hormone cortisol. If ACTH output is too low, cortisol production drops. Eventually, the adrenal glands can shrink due to lack of ACTH stimulation. Secondary adrenal insufficiency is much more common than Addison’s disease.





> Stoppage of Corticosteroid Medication
> 
> A temporary form of secondary adrenal insufficiency may occur when a person who has been taking a synthetic glucocorticoid hormone, called a corticosteroid, for a long time stops taking the medication. Corticosteroids are often prescribed to treat inflammatory illnesses such as rheumatoid arthritis, asthma, and ulcerative colitis. In this case, the prescription doses often cause higher levels than those normally achieved by the glucocorticoid hormones created by the body. When a person takes corticosteroids for prolonged periods, the adrenal glands produce less of their natural hormones. Once the prescription doses of corticosteroid are stopped, the adrenal glands may be slow to restart their production of the body’s glucocorticoids. To give the adrenal glands time to regain function and prevent adrenal insufficiency, prescription corticosteroid doses should be reduced gradually over a period of weeks or even months. Even with gradual reduction, the adrenal glands might not begin to function normally for some time, so a person who has recently stopped taking prescription corticosteroids should be watched carefully for symptoms of secondary adrenal insufficiency.


Here are the symptoms - I mention them here because they're kind of vague and it was really only luck that we caught M's adrenal insufficiency. Often it is not caught till the person goes into adrenal crisis, which can be fatal.

Of course, several of the symptoms could easily be IBD symptoms which confuses things further. Adrenal insufficiency can also cause vomiting and diarrhea and nausea.



> The most common symptoms of adrenal insufficiency are
> 
> chronic, or long lasting, fatigue
> muscle weakness
> ...


I would just check with Grace's doctor about vascular EDS and if he wants blood work more frequently. 2 months is probably ok especially if she is stabilizing but of course, you would need to check with her main specialists.


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## Maya142 (Dec 19, 2017)

Oh wanted to add - if Grace is still on pain meds (like hydrocodone) regularly (daily, or even a few times a week) that could be why he wants more frequent blood work. 

I'm not sure about Tramadol but stronger pain meds like Norco/Vicodin (hydrocodone) can be tough on the liver. Both have Tylenol in them too, which is also hard on the liver. I can't remember what she's on now but I remember her being on Norco at some point.

Tramadol is generally considered much safer than them and we are allowed to do 3 monthly blood work with that for my older daughter, even if she is taking it daily.


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## Farmwife (Dec 19, 2017)

Well before you came on board (pre-Maya days) on the forum. 
Grace has the same issue from steroid use.
If I remember correctly hers was mild and she had to have stress doses of pred as needed. 

That's good to have the list. 

As for the vEDS, the doc agree with me...for now. I don't believe we have it. 
It's just the hEDS, which is bad enough and all we can handle


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## Farmwife (Dec 19, 2017)

Narco but I'm happy to say it's only once a week if that.  So that's great! 
Tramadol did nothing for her. She's also on migraine meds. 
 In actuality this is the least amount of meds she's been on in years.


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## Maya142 (Dec 19, 2017)

Yes, M's condition requires daily hydrocortisone - the physiologic dose is generally what is used (what the body makes normally - like 4 mg Pred). We've been able to go a little lower than that but her ACTH is still VERY low, so she's stuck on hydrocortisone for the near future.

In addition, she gets stress doses when she is in severe pain or sick or with surgeries/procedures. 

In her case, her symptoms are diarrhea and nausea and fatigue when she needs a stress dose. Which makes it very hard to determine if it's Crohn's or adrenal insufficiency or something else.

We have learned from endocrinology that both GIs and rheumatologists use steroids much too liberally and taper too fast. Endocrinology really considers anything over 10 mg of Pred (!!!) a high dose and a low dose is really like 3-5 mg Pred.

I didn't think M had been on steroids THAT much till I saw her records . But they were always what I considered "low doses" usually under 10-15 mg of Pred. But unfortunately, if you do that many years in a row for many months in a row (3-6), you end up in BIG trouble.

Fingers and toes crossed than she doesn't have vEDS - she has enough to deal with!!


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## Maya142 (Dec 19, 2017)

> Narco but I'm happy to say it's only once a week if that. So that's great!
> Tramadol did nothing for her. She's also on migraine meds.
> In actuality this is the least amount of meds she's been on in years.


That is REALLY great :dance:!! Really seems like the more frequent Remicade is working for her joints!


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## DanceMom (Dec 19, 2017)

When A was on IVIG we did labs every month. Mostly because she was getting poked anyway, so why not. Now that she's on subQ we'll do labs every 3 months. Even with a high CRP they weren't interested in testing sooner.


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## kimmidwife (Dec 19, 2017)

Maya,
That is crazy about the Adrenal Insufficiency. We have never tested Caitlyn for it but I think we might need to.


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## my little penguin (Dec 19, 2017)

Kim our GI doc recommended Endo consult so they can figure out just what damage /side effects
Years of steriods have on Ds 
Much more than just adrenal insufficiency 
Definitely get a Endo consult 
They do scans bloodwork and other tests


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## Maya142 (Dec 19, 2017)

Yes, absolutely get an endocrinology consult. My daughter was on steroids a LOT but we never seriously considered she could have it - her GI and rheumatologist didn't seem to be worried. We insisted on the endo consult and within 6 weeks she had been diagnosed with adrenal insufficiency.

It has very non-specific symptoms so it is hard to catch.


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## kimmidwife (Dec 19, 2017)

Thanks for the suggestion MLP and Maya. My son is seeing an endo because of slow growth so we can make an appt with her for Caity.


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## Jmrogers4 (Dec 20, 2017)

Yeah for Grace.  I went into a toys r us for the first time in many years this Christmas to get something for my little nephews, thought I would get him some Thomas train stuff since he loved my youngers son stuff that we still had up in the closet last year.  It seemed like there was 8 different kinds of trains and assorted track, it made my head spin.  When J was his age there were 2 choices wooden or metal.
Just think how excited she will be on Christmas morning!


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## Farmwife (Dec 21, 2017)

Thanks Jacquie
That's what made me laugh because when I was a kid there were cabbage patch kids. All the rage back then.
Now they have dolls that tell you they need to be changed or fed. Ummmmmm, no! 
Like I need to hear more voices asking for food.:ylol:
However,  I go back to Toys-R-Us to get my son's presents and saw a receiving blanket for the doll:shifty-t: I got it. I need help.  :ybatty:

On a serious note

Remicade was yesterday.  They took her temp at the begging and it was normal.  At the end of infusion it was a 100.0. Fever stopped about an hour after
Nurse said it could be reaction.

  Is it possible to have just a fever for a reaction?


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## Pilgrim (Dec 21, 2017)

Way late to answer this top of page question but H gets labs every month due to Mtx. Maybe because our girls are younger?
Ok, back to today's question.


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## my little penguin (Dec 21, 2017)

To a drug yes
When Ds would get ivig 
They monitor 
Temperature 
Heart 
Pulseox and blood pressure 
To look for signs of a reaction 

Don’t they pre treat her with Tylenol/Zyrtec
I know for ds that’s a given


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## Farmwife (Dec 21, 2017)

She take  Benadryl and Tylenol every single infusion.
They also do the same monitoring for her. 
Usually it's twice, once at the beginning and once about a half an hour before the infusion is done.


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## Maya142 (Dec 21, 2017)

I wouldn't worry too much about a temp. of a 100.0 F, even with Benadryl or Tylenol. 

M runs temperatures because of her AS and we were told by Infectious Diseases that they really don't begin to worry at all till 100.5 F and it's really 101 F and above where it is concerning.

Also, your body temp. does naturally go up later in the day...


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## DanceMom (Dec 21, 2017)

Our doctors consider 100.7 and above to be a fever.


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## my little penguin (Dec 21, 2017)

Same here 
Non ibd kiddo who is “normal “ 101 is a fever 

Ibd kiddo due to biologics and immunosuppressants (therefore shouldn’t run a fever ) anything over 100.4 F requires a call 

That said raising temp during an infusion is different than a”fever” due to illness .
Same with raising bp etc...
These are signs of distress of the body during the infusion on how well it’s tolerating it


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## Farmwife (Dec 21, 2017)

I should have clarified, the fever was just for the infusion.
No other symptoms of illness before or after. Just during the infusion.


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## DanceMom (Dec 21, 2017)

A's infusions were obviously different than Grace's, but some fluctuation in temp and BP was expected. A temp of 100 would not have been a cause for concern.


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## kimmidwife (Dec 22, 2017)

I would definitely keep an extra eye out the next infusion. Caitlyn’s reaction to imuran started with just a fever.


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## Farmwife (Dec 25, 2017)

Merry Christmas and Happy New Year,  2017!

The little farmgirl loved her gifts and demanded to take her baby to show her grandma! 
She named the baby after same grandma while getting another mountain of gifts.:ylol:
:sign0085: It looks like Christmas grave yard in my house. 3 garbage bags full of wrapping and boxes and still there's more. :yfaint:

May you all make some wonderful memories this holiday season:thumleft:


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## kimmidwife (Dec 25, 2017)

So glad she loved it!!!! Happy holidays!!!


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## Maya142 (Dec 25, 2017)

Aw glad she liked her "baby" . Hope she had a wonderful day!!


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## Pilgrim (Dec 26, 2017)

Just wait until you hear all of your lessons repeated to the baby doll! Sometimes I listen to the girls play, and think, "Do I really sound like that?!"


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