# Imuran... here we go!



## Farmwife (Oct 1, 2015)

I hope y'all are well. Fall is here and the farm is slowly returning to a bit of quiet for awhile. Well, until corn season.:ymad:

 Grace got her first set of cortisone injections in her knees at the kids hospital today.
Grace is having a minor system flare (GI, joints, bladder, skin, eyes).

Since Remicade, Mtx and sulfasalazine don't seem to be bringing lasting remission
 the doc want to try Imuran.
 The other thought was to move Remicade to every 2 weeks but decided against that for now.


So did the combo of Remicade and Imuran work for them? 
Did it help if you/they had arthritis?
Side effects?

I'm nervous tonight because her ibd has been somewhat more controlled ( her JIA had been a nightmare) and I don't want it angered it.:yfaint:

Thanks for any advice!


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## Maya142 (Oct 1, 2015)

How did the injections go Farmwife? Was she sedated? M had one in her right knee and it worked like magic. She wasn't sedated but was much older than Grace - I think she was 13.

M had been on Remicade and Imuran and Sulfasalazine. She did ok but not so great. Sulfasalazine was not doing anything so we discontinued it within 3 months of starting that combination. She was on high dose Remicade (15-20mg/kg), every four weeks with the Imuran, and got better but just not good enough, so we had to switch to Simponi. Her IBD did pretty well on that combination but her joints were a real nightmare.

With Imuran, M had nausea for the first week or so and whenever we increased the dose but it settled pretty quickly. Besides that she was fine. No hair loss, blood work looked good (she did have to have weekly bloodwork for a while). The nice part about Imuran is that you can test the levels, and so when hers were found to be too low we were able to increase the dose (unfortunately it didn't help much).

Imuran apparently used to be used a lot for JIA and lupus but not so much anymore. 

Good luck!! I hope it helps!


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## Farmwife (Oct 1, 2015)

They wanted to fully sedate but I said let's try the laughing gas and she did great!
Doesn't remember it a bit but I will remember her telling me it was like floating in a bubble:shifty-t: 

So far the shots seem to be working. Other than the pains from the needles she hasn't mentioned pain. Tomorrow will be the true test.


What time a day did you give the med?


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## pdx (Oct 1, 2015)

That's great that she was able to get by with just the laughing gas.  I really hope that the cortisone and Imuran work well for her!


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## my little penguin (Oct 1, 2015)

Hope it helps


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## Optimistic (Oct 1, 2015)

I feel like this is going to work for her. I hope I am right!


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## Maya142 (Oct 1, 2015)

We did Imuran at night at first so she'd sleep through the nausea. When her dose was increased, we split the dose, 50mg in the morning and 50 mg at night.

Glad she did well with the laughing gas!! She's so brave! M's knee was sore from the needles for a day or two but then it did work like magic. She was told to take it easy for a day - they said she should minimize walking, as far as possible (I think she missed a day of school if I'm remembering correctly).

 Fingers crossed both Imuran and the steroid shots work well!


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## FrozenGirl (Oct 2, 2015)

Imuran and Remi was a great combo for me. I don't have JIA but it did help my Crohns related joint pain.


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## Farmwife (Oct 2, 2015)

We gave the new med and so far no side effects!:ybiggrin:

:soledance: But the big new is..........
I gave Grace her last Mtx injection! Grace always handled the shot well and even at the end would inject herself but after 2 years of this it, it's great to be able to stop it!!!!ll:medal1:


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## Maya142 (Oct 2, 2015)

:dance::dance: Glad you're done with MTX! M found Imuran much easier to tolerate than MTX. We used to give M Imuran at night after a snack. 

Good luck!


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## Maya142 (Oct 3, 2015)

Farmwife - just a thought - did the doctor ever consider Arava (Leflunomide) for Grace? It is used quite a lot for JIA. It wouldn't work for IBD but I'm assuming the Remicade is keeping her IBD under control. We found that it worked a LOT better for M's joints than Imuran. 

Maybe something to keep in mind if Imuran does not work?


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## Farmwife (Oct 4, 2015)

Thanks, if this doesn't work I will be asking!:hug:


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## kimmidwife (Oct 4, 2015)

Prayers being sent that this is her miracle!!!!!!!


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## Sascot (Oct 5, 2015)

Hope the imuran works great so you don't have to worry about another med change


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## Jmrogers4 (Oct 6, 2015)

Hope the Imuran combo works great to control both things


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## Farmwife (Oct 27, 2015)

:ymad: Rant ahead:ymad:
I called to get a new longer scrip for Grace's Imuran. 
The nurse said she call it in right away. 
She called back later and said to drop her back to one pill not two like the bottle said. 
I asked why and she said the dose was to high for her weight and have a nice day!

So............ why the mistake. You would think they ( doctors, pharmacy, Insurance...) would have checked for this.:ymad:

I'm probably missing something but it still ticks me off!

On the bright side:smile: Grace's arthritis is doing well :hug:
but her tummy is starting to hurt more and more. Go figure:ybatty:


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## Maya142 (Oct 27, 2015)

Glad her arthritis is doing better! That's wonderful!

Has she tried having Imuran after a snack? We were told it would be less likely to cause nausea/stomach issues if M had it after food. We ended up giving it to her at night, with a little snack. It worked well for us.

Good luck!


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## Lady Organic (Oct 27, 2015)

maybe the GI wants to start progressively with the Imuran, that would be common practice.
Imuran gave me mild nausea in the first weeks. 
It is recommended to eat with Imuran to avoid stomach irritation my pharmacist told me, just as said above. This is different from sister drug 6-mp which should be taken on a empty stomach. I wonder why the difference since both meds are so similar...


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## Farmwife (Oct 27, 2015)

Grace so far has no side effects that are obvious to me.
She takes it with dinner.

I guess it could be the new med,  that's something to consider if her abdominal pain worsens.

How much Imuran does/did your kiddos take?

Grace is 50 lbs and on 50mg Imuran.


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## Maya142 (Oct 27, 2015)

The dose of IBD is typically 2mg/kg- 2.5 mg/kg (and sometimes higher). M was around 40-41 kg (88-91 lbs) and was on 75mg of Imuran, a little less than 2mg/kg. 

Her Imuran (6TGN I think?) levels were VERY low at that dose so we increased it to 100mg, making it like 2.4mg/kg. Her levels went up with the dose increased.

If Grace is 50 lbs, then her dose is a little over 2mg/kg of Imuran.


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## CarolinAlaska (Oct 27, 2015)

I'm glad they caught the mistake, and I'm glad her arthritis is improving.


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## Farmwife (Oct 27, 2015)

Thanks

Grace was told to take 2 a day. 
So that would have put her a 100mg total. 
Now she's back down to 1 pill at 50mg. 
It will be ingesting to see if the pain comes back. 
Of course:ybatty::voodoo::ybatty::voodoo: 
She gets a dose that works.......... and its to high.


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## Maya142 (Oct 27, 2015)

Paging Catherine - I think her daughter was on a very high dose and it worked for her. 

Imuran is hard on the liver though, and considering Grace is on other medications, they may not want to give her a very high dose of it.


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## Jmrogers4 (Oct 27, 2015)

Jack was up to 150mg which is what the hubby takes and I was freaking out because how could a 200 pound man and 70-75 pound boy be on the same dose especially when it still wasn't at therapeutic levels for Jack. That's when we dropped it back to 50 and added alipurinol he ended up on 75mg of Imuran along side 150mg of alipurinol


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## Sascot (Oct 28, 2015)

Wow, awful when they make a mistake like that! Andrew is on 50mg a day and he is about 68kg


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## Catherine (Oct 28, 2015)

Yes, my daughter is on a higher dose 200mg at 58kg.  She dose is 3.4 per kg, I haven't found any on a higher dose for IBD.

Her maximum dose per weight is 125mg.  She dose has move up using test for  Imuran levels.  Her starting dose was 50mg at a weight of 44kg.


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## Farmwife (Oct 28, 2015)

:yfaint: Well guess what??????? Her legs pain came back with a vengeance last night.
So just one night with out the pill and she's already hurting. Her stomach was hurting also.


So is there any study on increased Imuran in children? 
 I don't want to risk her liver but her diseases out of control won't help either.
Thankfully her alt and ast levels are all normal and have never gone up with the higher dose of Remicade.


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## CarolinAlaska (Oct 28, 2015)

Oh no!  I'm sorry she's hurting already.


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## my little penguin (Oct 28, 2015)

Typically the half life is 6 days 
So unless you changed the dose 6 days ago
Shouldn't make a difference yet .


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## Catherine (Oct 28, 2015)

Have you had any blood tests since starting  Imuran?


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## my little penguin (Oct 28, 2015)

http://www.ncbi.nlm.nih.gov/m/pubmed/15167634/


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## Maya142 (Oct 28, 2015)

I would also guess that the increased pain is a coincidence and not related to decreasing the dose. We weren't even allowed to test Imuran levels until she'd been on the drug for 6 weeks, so it probably does take a while for a change in dose to make a difference.

Good luck!


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## Catherine (Oct 28, 2015)

Asking about the standard blood tests for Imuran not testing of levels.

Most GI do blood tests weekly or every two weeks for least the first six weeks after starting Imuran or increasing Imuran dose rate.


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## kimmidwife (Oct 28, 2015)

Sorry to hear hope you get it figured out quickly!


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## Farmwife (Oct 28, 2015)

Catherine said:


> Have you had any blood tests since starting  Imuran?


2 weeks at her Remicade. Her levels were fine for her liver. 
No mention for doing labs closer than 4 weeks at her infusions.
Her teacher told me that Grace had a lot of pain today and was nauseous most the morning.
I can't figure this out.:voodoo:


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## Catherine (Oct 28, 2015)

Farmwife said:


> 2 weeks at her Remicade. Her levels were fine for her liver.
> No mention for doing labs closer than 4 weeks at her infusions.
> Her teacher told me that Grace had a lot of pain today and was nauseous most the morning.
> I can't figure this out.:voodoo:


4 weeks is too long to wait for blood tests.  Although Imuran can effect the liver at any time.  The most common times are within the first six weeks or after an increase in dosage.  They should be using the Imuran schedule for blood tests.

http://www.healio.com/gastroenterol...6-a430-d735ef89a8d7}/how-do-you-monitor-patie


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## Maya142 (Oct 28, 2015)

We did weekly blood tests for a while, then every other week and then every month and then every two months and so on. I agree with Catherine, they should be testing more often.

Also, pancreatitis can be a side effect of Imuran. Extreme nausea, vomiting, abdominal pain can all be signs of it.


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## CrohnsKidMom (Oct 29, 2015)

My son tried Imuran when first diagnosed, but was only on it for a week or so as he couldn't tolerate it.  I remember the bloodwork protocol was weekly testing for the first 6 to 8 weeks, then biweekly (I think for 2 months), then down to monthly for a bit, ending up at bimonthly.  My son switched to MTX after that and bloodwork was done every 8 weeks, which is the same now that he's on Remicade.  They really watch the liver numbers when someone starts Imuran.


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## Farmwife (Oct 30, 2015)

:yfrown::mad2::yfrown::mad2:
THEY MESSED UP AGAIN!!!!!!!!!!!
I ( notice it says I) called last night a left a message asking about lab testing every week for this new drug!
The nurse called this morning and said, ya, she needs it tested every 2 weeks for the next 3 months!!!!!
I love this doc and he's nurses but they've messed up twice and it could have damaged Grace's liver. 
Of course I'm being dramatic.... but I don't care. 


Moral of the story parents,
Double check everything!!!!


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## pdx (Oct 30, 2015)

I'm glad that you called!


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## CarolinAlaska (Oct 30, 2015)

Farmwife said:


> :yfrown::mad2::yfrown::mad2:
> THEY MESSED UP AGAIN!!!!!!!!!!!
> I ( notice it says I) called last night a left a message asking about lab testing every week for this new drug!
> The nurse called this morning and said, ya, she needs it tested every 2 weeks for the next 3 months!!!!!
> ...


That is the beauty of this forum, isn't it!  These docs are so swamped, stuff like this is becoming common...


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## kimmidwife (Oct 30, 2015)

That is really scary! Glad you are on top of it!


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## Farmwife (Nov 6, 2015)

Let's play.....
*Out Guess the Doctors*

2 weeks past Remicade and any ground gained has ben lost.
She's has pain in her stomach, abdominal, JOINTS, skin (toes are cracking again). 

We have an emergency appointment set for Monday with her Rheumatologist and hopefully the GI.


We've maxed out Remicade and she's at full dose for Imuran.

Now I play the game:dusty:

Options left.....
1-Up her back to the double dose of Imuran and/or push for an even high Remicade dose.
2-Switch to another med all together.
3-Put her back on EEN (not looking forward to that one)!!!! This might give the bowel rest long enough to help any simmering gut inflammation settle down.
4-Remicade Infusions every 2 weeks. :yfaint:

Wasn't there someone here that did a short course of Remicade AND Humira TOGETHER?

:shifty-t:Any other options I'm not thinking about?


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## Lady Organic (Nov 6, 2015)

im sorry to hear that.

iF EEN worked in the past, I'd go for that option. That would give a chance for Imuran to kick in, which can be a few months.


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## my little penguin (Nov 6, 2015)

Thinking een to buy time for Imuran as well
Plus there is amplified pain syndrome which is common in JIA kids 
What PT is she doing ?
Swimming ? How many days a week?
Stretches daily ?
Any limits on diet ?
NSAID gel ?


My pint sometimes if you are not working all of the non med options it can increase psi significantly


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## Maya142 (Nov 6, 2015)

We've done high dose Remicade. There's not a huge difference between doing high dose Remicade (15mg/kg to 20 mg/kg) every 4 weeks and doing regular dose Remicade (5mg/kg - 10 mg/kg) every two weeks.

For M, high dose Remicade didn't really do much more than regular Remicade. We did it every 4 weeks (once at 3.5 weeks). M did get better but not much - there were still BIG problems with her joints. Her Crohn's was mostly under control though on the high dose Remi though her FC was around 250.

Doubling Imuran is difficult because Imuran can be very hard on the liver. But you could try it. 

We ended up switching M to Simponi which was a great decision. It has helped quite a bit. Her FC is now 26 (!!!) and her joints are doing better, though she does still struggle with pain. She currently doing a pain rehab program and is improving every day! 

Since you've just added the Imuran, it's probably kind of early to switch.

I think your best bet is either EEN or Prednisone to give the Imuran time to kick in. The issue with EEN is that it may not work for her joints. If her joints are the worst, I'd ask for prednisone, but if it's her gut, then I'd do the EEN.


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## Farmwife (Nov 6, 2015)

She's in PT and OT, weekly. February is the soonest we could get her in for water therapy.
Stretches with her dad and will be doing cross country skiing and or ice skating soon.

If this is life then the docs need to tell us. We'll learn to live with it but if there's a chance of something more to help her, I'm willing to consider the possibility!


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## Maya142 (Nov 6, 2015)

Wanted to clarify - M has amplified pain syndrome. It is VERY common is JIA kids I believe. You need to make sure the pain in her joints is from inflammation and it is not just chronic pain before changing her meds.

This was very difficult to do for M because her inflammatory markers aren't ever raised. We ended up having to do MRI's of her very painful joints (it was like 8 MRI's). Most of her MRI's looked better than before and she was in a lot more pain than she should have been for the amount of inflammation that was visible in most of her joints. Once we got those results, her rheumatologist and pain management doctors (both locally and at Boston Children's) diagnosed her with pain amplification.

Medications like Lyrica and Gabapentin are used to treat pain amplification as well as a lot of PT and OT. If all else fails, pediatric pain rehabs are recommended.

M is doing GREAT now at the pain rehab program. She has only been here 4 days and her sleep issues have gotten MUCH better.


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## Maya142 (Nov 6, 2015)

Is Grace allowed NSAIDs? They make a BIG difference for M - she can't manage without them. In her case since the IBD isn't quite as bad as her AS, she is allowed to use them. 

We had to try like 12 NSAIDs before we found one that worked and didn't upset her stomach. She used Mobic for a long time and is now on Relafen.


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## Maya142 (Nov 6, 2015)

One more thing - there are completely different biologics that are options for kids with JIA. These are Orencia (T cell inhibitor or something like that) and Actemra  (IL-6 inhibitor). The issue is that they probably wouldn't work for the IBD, so you'd need something else (Imuran, MTX) for the IBD.

I have heard of one kid who was on BOTH Humira and Actemra. You can't be on Humira and Remicade because they suppress the same part of the immune system (TNF) but since Actemra and Humira suppress different parts, they are used together (very rarely). The kiddo we met went to BCH and was only on Actemra and Humira for a short time.


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## Catherine (Nov 7, 2015)

Increasing imuran maybe an option but you would need test levels first.

It may be too too soon to increase yet.

With Sarah we increase by 25mg at a time over a period of approximately two years.  7 increase in dose in all.


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## CarolinAlaska (Nov 7, 2015)

Poor farmgirl and farmwife.  I'm sorry she is suffering so.  Not fair!  Foul!  I'm praying for her.


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## CrohnsKidMom (Nov 7, 2015)

Poor child!  I'm praying too-that a solution is found, for her pain, and for your stress level!


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## Sascot (Nov 7, 2015)

So sorry to hear that! I have no experience of other meds so no advice, sorry.


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## Farmwife (Nov 17, 2015)

Tomorrow is another big conference with the rheumatologist. Here's what I know so far from them,
* see my questions below*

1- The believe the Imuran should have worked by now. *

2- Remicade is losing its effectiveness. *

*1- How long did it take for Imuran to kick in for your kid? I just feel that it's too early to tell.
*2- So if Remicade can lose " effectiveness" does that mean the body can build up resistance against the drug? 

Now just thinking out loud.........

If it's still working for a week or two after infusion, is it still worth fighting to keep the Remicade?
Also, if her intestines are not absorbing properly; wouldn't that mean her pills are not absorbing either?????


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## Jmrogers4 (Nov 17, 2015)

Not sure about the absorbing. It took us a long time past the time when it should have been effective to even get the dosing right so in all it was about a year before we saw effectiveness from Imuran only to find out a couple of years later that it was probably not ever as effective as we thought.
Have they tested therapeutic levels for Imuran if so I would think at least 12 weeks to see if it was going to make any difference.


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## Maya142 (Nov 17, 2015)

I would also have them test Imuran levels. How long has she been on the right dose? It took months before Imuran was effective for M's IBD, we never saw a difference in the arthritis with it, unfortunately.

You could try high dose Remicade (15mg/kg-20mg/kg) or regular Remicade (5-10mg/kg) every two weeks. We thought it was worth a try for M, and the high dose Remicade worked a bit for her, it just didn't do enough.

Her other options are Simponi and Cimzia if they want to treat both the JIA and IBD with the biologic. Stelara but I've never heard of it being used on a kiddo Grace's age.

If they think the Imuran will control the IBD by itself, then you could try other biologics that don't work for IBD but do work for JIA and are approved for JIA: Orencia and Actemra. Kineret also may be an option.

M has never tried these but we have met other kiddos with JIA who are doing well on them. None of them had IBD too though.

I would test Imuran levels and give it some more time. And maybe try high dose Remicade, depending on the levels. 

Good luck - thinking of you both!!


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## Farmwife (Nov 17, 2015)

Oct. 1st was the first time. 
So 4 plus weeks isn't long enough. I'll make sure to ask about the testing tomorrow.


Is there anyway to monitor the joints other than an x-ray?


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## my little penguin (Nov 17, 2015)

Took ds 5 months to get to therapeutic levels for 6 mp
4 weeks is not long enough at all


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## Lady Organic (Nov 17, 2015)

ultrasounds for joints. Some rhuemies have ultrasound machines in their office and can operate it. my rhuemy does it and has such a machine. US is no longer reserved to radiologists. ER doctors use them. Ultrasound is a tool that is being increasingly though and used in different specialities now. They are also studying its efficacy for cronh's disease for easier and faster diagnosis, they call it Surface abdominal US I think, and so far its promising, especially for small bowel. so eventually GI will prolly have ultrasound machines in their offices too.


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## Maya142 (Nov 18, 2015)

MRI's for her worst joints. That's what we do with M.


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## CarolinAlaska (Nov 18, 2015)

Jaedyn's 6 MP took at least three months, maybe six months to become effective? Have they checked for Remicade antibodies?


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## Farmwife (Nov 18, 2015)

Amplified Pain Syndrome 
The Rheumatologist now believes this is what's happening. 
Her spine is now involved and causing nerve issues, I'm not sure how but I hope to find out.
They want her to do a one too two week inpatient program.

Of course I didn't see that coming and totally blanked on any intelligent questions.
The rheumatologist said she's concern because of the escalating symptoms and thinks this should happen sooner than later.
So Christmas might be in the hospital?????


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## Maya142 (Nov 18, 2015)

M is currently doing a program in Cleveland Clinic for this. She has done two weeks inpatient and is doing one week outpatient. She has done SO well and it has fixed her sleep issues!

She went from lying awake in pain all night and finally falling asleep between 3 and 5 am to falling asleep at 11 pm, which is wonderful for her.

The program involves a lot of PT/OT, aqua therapy, psych, group psych, recreation therapy, art therapy and music therapy. It teaches the kids how to cope with and manage pain. It doesn't promise to take all the pain away, but helps them learn how to be functional despite the pain. As kids become functional, slowly the pain reduces. M says her pain level is lower and we are very slowly weaning her off pain medications. We have also put her on Lyrica to treat the nerve pain.

Most programs have wait-lists and it takes a while to get in. We looked at one at Boston Children's and Cleveland Clinic. There is also a great one at Mayo and the most famous one is at CHOP (but they only take under 18 year olds, so M couldn't do it there).

Let me know if you have more questions :ghug:.


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## Maya142 (Nov 18, 2015)

There are two kiddos in this program with arthritis. It's a pretty common issue with JIA. Also lots of kids with RSD/CRPS and chronic headaches.


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## FrozenGirl (Nov 18, 2015)

My GI said at 3 months we would be looking at the highest effectiveness for Imuran so I would give it a bit. As for working for a week or 2 given that you said she is already at 10mg/kg and every 4 weeks I'm not sure if it is worth it. How long has she been on that dose? If it hasn't been long maybe time would help but otherwise I'm guessing she may just be a kid that doesn't have a great response to TNF drugs.


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## Farmwife (Nov 18, 2015)

Maya, they made it sound like weeks not months but I'll find out for sure in a day or two.

How do the nerves get involved? It also like like her bladder and GI track has nerve issues ( she's pooping every time she goes to the restroom but it's normal stool. Not normal at all for her.


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## Maya142 (Nov 18, 2015)

Depends on the program - at one point Cleveland Clinic had no wait list at all! Boston was like two months. It really just depends.

The nerves are actually always involved. When there is inflammation, nerves carry pain signals to the brain. In pain amplification, what happens is that even though inflammation is controlled with various meds (Remicade and Imuran for Grace) for some reason, the nerves continue to send pain signals, so Grace is still in pain. It's like a switch stays on instead of going off when inflammation went away.

That's a very simplistic version but I think it's the best way to understand what's going on.

Here is the CHOP explanation:
http://stopchildhoodpain.org/wp-con...uloskeletal-Pain-AMP-A-Guide-for-Families.pdf

Here are a few more links:

http://www.providencemedical.com/vnews/display.v/ART/53d98b09b8cb3

https://docs.chocchildrens.org/causes-and-treatment-for-pain-amplification-syndrome/

There is a book called Conquering Your Child's Chronic Pain which is GREAT at explaining all this. I DEFINITELY recommend that you read it!

http://www.amazon.com/Conquering-Yo...qid=1447890029&sr=8-1&keywords=lonnie+zeltzer


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## Lady Organic (Nov 18, 2015)

yeah, 6 to 7 weeks of Imuran is too early to say its not effective. It takes me about that amount of time for 6-mp to be effective and I have always been told its *at least* 6 to 8 weeks before it can kick in. Moreover, dr can start this treatment with lowest possible therapeutic dose and increase it, if possible, when there is no favorable response.


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## Farmwife (Nov 18, 2015)

Thanks Lady O,
All meds stay the same as they feel until we can get the pain/nerves under control, the meds wont be as effective. 
Hopefully once its under control the flare should go into remission. 

Also her EN spots have popped back up. GRRRRRRRRR


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## DanceMom (Nov 18, 2015)

I realize that Grace has joint issues and may be somewhat limited, but is she able to participate in a physical activity regularly? Something like soccer, softball, dance, etc. Dance has really helped A learn to cope with pain, fatigue, etc. and her team is an amazing support system as well. Dance motivates her to get out of bed on those difficult days and her doctors all agree it is an important component to her treatment plan. It keeps her strong. She's recently started running as well and somehow she seems to have more energy and feel better since adding a new activity. Just wondering if this may help Grace.


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## Maya142 (Nov 18, 2015)

^That's a great idea!

One of the things this program emphasizes is getting back to physical activity. In M's case, she has been in pain and inactive so long ("deconditioned") that it will take a lot of PT to get her back to sports/physical activity. In Grace's case, it may happen faster depending on what shape her muscles are in.

M played soccer through middle school and part of high school (despite her joints). She also played tennis, but not seriously. I now wish she'd tried swimming which is great for the joints! Anything that gets Grace moving and interacting with friends will help her keep her mind off the pain.

It might be a good idea to ask your rheumatologist if it's a high impact sport like soccer. It may be not be allowed depending on the state of her joints.


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## my little penguin (Nov 18, 2015)

DS participates in swimming as a sport
Regular practices also help with his pain

Most high schools have a separate swim
Club
Kids age 6 and up typically can join
Some are younger than six I know
General rule of thumb 
Be able to swim the entire length of the high school 
Pool
Swim lessons at the YMCA or Red Cross every week are a good thing for her age group 
To get to swim club level 

Good luck


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## Farmwife (Nov 28, 2015)

Does this sound like a fistula or ingrown hair.

So, Grace said she feels like she has a sliver in her butt ( remember she's 6), so I look and she has a pee size lump about two inches from her anus. So, it's more on her butt cheek but she's never had this before.
It's not open or oozing... yet. She said it hurts but not a lot... yet. It's red and inflamed but not scary looking.... yet.
As I've said before, she's pooping at ever bathroom trip but it's not liquid.


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## Maya142 (Nov 28, 2015)

Sounds like an abscess. I'd call her GI as soon as possible.

Sending hugs Farmwife!


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## Farmwife (Nov 28, 2015)

Even I'd it still looks skin deep? I know it might be deeper but I can't tell yet.

I'll be calling the GI for sure!


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## Maya142 (Nov 28, 2015)

Honestly, I'd call her GI just to be safe. Or even take her in to the pediatrician, so that they can tell you what it is. 

How is she feeling? Has she had any fevers recently?


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## my little penguin (Nov 28, 2015)

Call the on call Gi 
Since you have more 
Than a day until you could speak to the regular Gi


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## Farmwife (Nov 28, 2015)

Yes she has a fever but she also gets that with her JIA.
I'll call because she's on Remicade and Imuran. 
Even it it's not an abscess it might turn ugly quickly.


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## kimmidwife (Nov 28, 2015)

FW,
Sorry to hear about this. I would call right away especially if she has a fever. Keep us posted.


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## CarolinAlaska (Nov 29, 2015)

Sounds like a furuncle or boil-like thing.  I wouldn't let it go long, like they said.


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## Sascot (Nov 29, 2015)

That's how Andrews abscess started. Best to get it checked and onto antibiotics before it gets worse. Andrew did have a fistula underneath but it's just as normal to get an abscess without having any fistula.


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## Gmama (Nov 29, 2015)

Oh FW, so sorry to hear this, & sorry to say but something will have to be done. LJ has had an abscess that was from a fistula but also had one that was not. Best to get with the GI & get a sooner than later appt with a pediatric surgeon for a look. None of our (several) GI docs would do anything with an abscess other than look at it & say, "Yep, that's an abscess":yfaint:
Hopeful that it will be a quick & painless fix for your sweet girl!


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## my little penguin (Dec 2, 2015)

What did the doctor say ???


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## Farmwife (Dec 2, 2015)

Oops sorry, it went away with in two days.
I think CarolinaAlaska was right.
I will be keeping an eye on it to see if it comes back.
We went to the docs on Monday and it was almost gone.
One less thing to worry about.

We find out this week when Grace will be admitted to the hospital for her therapy.
Hopefully sooner than later!


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## Maya142 (Dec 2, 2015)

For the pain rehab program? M had a really good time, despite being in pain! She made a lot of friends and they really make things fun for the kids - things like PT and OT and aqua therapy. 

Hope they can get her in soon - it's made a big difference for M.


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## my little penguin (Dec 2, 2015)

Good luck on the therapy


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## DanceMom (Dec 2, 2015)

Glad it turned out to be no big thing. I swear, we get those scares way too often. Our minds naturally go to the worst case scenario.


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## Gmama (Dec 2, 2015)

So happy to hear your news! One less thing to worry about is right!!


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## Sascot (Dec 3, 2015)

Hope the therapy goes well. Glad the abscess is smaller.


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## Farmwife (Dec 3, 2015)

The pain clinic has been temporarily cancelled until July.
That's what the head doc there told us after talking for 2 hours.
He put Grace on a muscle relaxant that starts with a R (? rotusan?).
We go back in a month.
He brought up other pain clinics but we don't want to travel as of yet.

He doesn't believe it's AMPS. He said it had to do with her muscles and called it something else.
Good doctor but disappointed about the clinic.

He also said she had heel drop. Anyone heard of this?


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## CarolinAlaska (Dec 3, 2015)

I've heard of foot drop, but not heel drop.


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## Farmwife (Dec 3, 2015)

He kept saying heel drop and that's it's not normal. All confusing!


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## Maya142 (Dec 3, 2015)

Robaxin for the muscle relaxant?

I know traveling is difficult, but I would try to get a second opinion. Given the amount of medication Grace is on, it very well could be AMPS and not JIA that is causing the problem. Is Mayo close to you? They have a VERY good program.

Did he call it Myofascial pain by any chance?


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## Farmwife (Dec 3, 2015)

Yes, your amazing Maya!!!!! Yes that's the meds also.
That's what's it called! Why a second opinion? He felt because he can feel inflammation and every muscle hurts it's not AMPS but more reactive pain. Keep in mind I'm still trying to put together the whole meeting.
He mentioned Cincinnati, Cleland and Minnesota children's clinics for possible pain clinics.
Mayo is not covered by or insurance.


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## my little penguin (Dec 3, 2015)

But didn't she go to mayo a year ago or so


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## my little penguin (Dec 3, 2015)

What type of doc was this again 
I forgot if you mentioned it


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## Farmwife (Dec 3, 2015)

my little penguin said:


> But didn't she go to mayo a year ago or so


Your right it's was covered but it was consider out of state or network. We had to cover a HUGE portion because they didnt accept Michigan Special Children's Health Program ( or regular Michigan Medicare). We can't afford it again.

It's been 2 years now. Time flies.

I guess I could call mayo and ask if they've change their minds


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## my little penguin (Dec 3, 2015)

If you have state insurance most will not cover out of state without extensive circumstances 
Regardless of where you go


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## Maya142 (Dec 3, 2015)

Cincinnati is supposed to have a great program! I can tell you that we LOVED Cleveland but they did tell us that the youngest kid they have ever had was 8 years old. They may take younger kids though if they think Grace will benefit from the program.

 No idea about Minnesota.

I guess the second opinion because her rheumatologist thinks she can AMPS and this pain management doctor thinks she doesn't? With M, it was so difficult to tell if it was AMPS or inflammation, we ended up doing MRI's. They looked quite good - some inflammation, but definitely not enough to be causing the kind of pain she was in, so that's when we knew AMPS.

Of course, if her joints are visibly inflamed, then MRI's aren't necessary. But it sounds like her rheumatologist thought inflammation wasn't the issue?

M has been on Robaxin and it didn't work well for her. She takes Flexeril (which is also a muscle relaxant) occasionally, when her muscles spasm. It helps a LOT for muscle pain but not for AMPS pain or arthritis pain.


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## Farmwife (Dec 3, 2015)

my little penguin said:


> What type of doc was this again
> I forgot if you mentioned it


The Doctor is the director of the clinic. He specializes in pain disorders. 
Our Rheumatologist said he's a great doc to help us. 
He's more than willing to send us else where but feels she's not in eminent danger.
He's not happy about the pain clinic being shut down.


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## Farmwife (Dec 3, 2015)

What's interesting is she still meets the criteria for Ehlers Danlos Syndrome (sp?).
But this doc still not sure it's that. After all these years we still come back to EDS.


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## Maya142 (Dec 3, 2015)

The thing about traveling is that it can take a while to get an appointment for just an evaluation. At Boston Children's, it took a month just to get the evaluation appt. For Cleveland Clinic, it took 6 weeks.

Once they evaluated M, then they put her on waitlist. Depending on the program, the waitlist can be a week to several months.

So just keep in mind that the process takes a while. You could try the muscle relaxants, but if they don't work, I'd think about starting the process elsewhere.

You can stay at the Ronald McDonald House at Cleveland - we did and it really cuts down costs.


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## Sascot (Dec 4, 2015)

That is so disappointing about the clinic. Hope the muscle relaxant helps, frustrating not having clear answers


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## greypup (Dec 7, 2015)

Farmwife,

My daughter has possible EDS and also has joint pain.  We are going to a genetic specialist   in a few weeks to determine if it is EDS.  We were told by the rheumatologist this is the only way to dx it...


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## Farmwife (Dec 7, 2015)

Yes and no. We saw the generic specialist at mayo. 
Given Grace's young age they wanted too see if by year 9 or 10 if she would still meet the criteria for EDS.
But given your girl is older it might be wise.
I was told that there's no true test and that they go on physical, symptoms and markers (genetic testing). However they said you can have no markets and still have EDS.

Grace doesn't have the stretchy skin, does your kiddo?
 I do know that you don't have to have stretchy skin to have EDS.


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## greypup (Dec 7, 2015)

M doesn't have stretchy skin.  She has some hyper-flexibility and joint pain.  Her brothers have stretchy skin.  They're going to the doc too.


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## Farmwife (Dec 20, 2015)

Can Imuran be causing joint pain?
Twice now Grace had to come off of it because of illness and both times ( plus a coupe of days I just plain forgot to give the pill, I know bad mama) her joint pains almost went away for those days.
I'm not sure if that's possible but I would be upset if this whole time it was Imuran causing her decline.
I will can the rheumatologist tomorrow to all their advice.

Also do you have to taper Imuran?


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## my little penguin (Dec 20, 2015)

No taper needed
Imyran lasts longer in the system  so it really wouldn't be the cause
Jspa waxes and wanes a lot all on its own 
And when the body is busy with illness the joints tend to behave sometimes at least for ds


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## kimmidwife (Dec 20, 2015)

Hope you get it figured out!


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## Maya142 (Dec 20, 2015)

Yeah - I'd agree. A kiddo with JIA can be awful one day and absolutely fine the next. It's very confusing.

Also, while some people flare while they're sick (like my girls), we have also met kiddos whose joints get better when they're sick. Not sure what the science is there, but maybe something like that is going on, since her joints have been better mostly when she's been sick and off Imuran?

Imuran used to be used a lot for JIA. It's still used for lupus, so I don't think it makes joint pain worse.

I would ask your doctor though - you never know!


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## Farmwife (Dec 31, 2015)

Update to end the year.
Not good I'm afraid.

We notice she slowed way down in eating. Back to small meals and belly cramps.
Put her back on formula for 2 weeks and then will discuss with GI on what to do next.
 JIA did get better on muscle relaxer but now seems to be wearing off.
We meet with the new pain doctor again and see what we can do next to help her pain to go away or at least manageable.

The GI might want to do more testing in the new year but I can't see finding out anything we don't know already.

The good news is Grace had a great Christmas day and did great at the party. Of course getting all the presents and told how pretty your are helps anyone feel better lol


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## my little penguin (Dec 31, 2015)

Testing gets you dx and meds and improved quality of life ( ie less pain)


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## Maya142 (Dec 31, 2015)

If Grace has Gastroparesis, it can be treated. There aren't very many meds, but there are some. Dietary changes can also help. 

However, you'd probably have to do the gastric emptying test before her GI will give her meds. Typically with Gastroparesis, you'd have nausea and fullness after meals. Abdominal discomfort or pain. Possibly vomiting or weight loss, depending on how severe it is.

There are a number of different medications that can be used for amplified pain besides muscles relaxants. Antidepressants like Elavil and Cymbalta are sometimes used. Anticonvulsants like Gabapentin and Lyrica can also help.

M is currently on Lyrica. We can't really tell if it helps though because her AS is flaring.

I do think the pain program is worth exploring (even if you have to do it in the summer). It did help M - she is more active and stronger, she is eating better and is barely using her tube and she is weaning of pain meds very slowly. She sleeps better, though she does sometimes have bad nights because of pain. She can do a LOT more during the day and is just more functional.

However, in her case we still haven't gotten the AS under control so that is just making everything worse. We are going to do steroid shots into her SI joints because they're her worst joints right now.

It's tough with both JIA and amplified pain. I hope your pain management doctor has ideas.


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## Farmwife (Dec 31, 2015)

After a meal....
Feels full after a few bites, nausea and thinks she's going to vomit but never does.... yet.

This pattern cycles every couple of months but seems to be picking up and staying longer.

She can handle her formula if she drinks slow. That doesn't seem to cause problems.

We're thinking we will do the pain clinic in the summer. Right now we're trying to set up a program here but it's proving a challenge because the pain doc wants final say so in everything. Not many places here work with kids and the pain doc is concerned that it can do more harm than good for Grace I'd not done right.


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## my little penguin (Dec 31, 2015)

Honestly you need a specialized pain clinic that deals with chikdren
Even if you have to travel 
There is a reason the wait lists are so long at certain places 
Because it's a difficult thing that needs to be done right ( which comes with experience )


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## Maya142 (Dec 31, 2015)

Could definitely be gastroparesis - liquids empty more easily than solids. It's definitely worth investigating.

Studies have shown that outpatient programs (like outpatient PT/OT) just don't work as well as intensive pain programs. Some are inpatient, like the one at Cleveland Clinic and some are day programs, like the one at Boston Children's.

Mayo Clinic has a REALLY good one - if you can somehow get her there, that may really help. We stayed at Ronald McDonald house which made things much easier. Most big Children's hospitals have one nearby.


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## Sascot (Jan 1, 2016)

Sorry it's not a better start to the year. Glad she enjoyed Christmas though. Wishing you a year where they can finally find a definite diagnosis and meds to control it!


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## pdx (Jan 1, 2016)

I hope that she's feeling a little better today, and that you get some answers in the new year.


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## Maya142 (Jan 1, 2016)

Farmwife - here is a list of pediatric pain programs in the US. I don't know how current it is - it says there is one at the Children's Hospital of Michigan.

There are two in Minnesota (but Mayo Clinic is the one to go to according to we have heard).

http://americanpainsociety.org/uploads/get-involved/PediatricPainClinicList_Update_2.10.15.pdf


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## kimmidwife (Jan 2, 2016)

Hope she is feeling better! Crohn's stinks!!!!


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## Farmwife (Jan 3, 2016)

She's been admitted to the hospital. 
No longer keeping food down, passing bm's hurts and joints are to painful to move.
Yes, crohn's and JIA stinks and breaks my mama's  heart.


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## DanceMom (Jan 3, 2016)

Poor baby!! Keep us updated.


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## kimmidwife (Jan 3, 2016)

Poor baby!!! Praying for her!!! Keep us posted!!!


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## my little penguin (Jan 3, 2016)

Sending healing thoughts your way


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## Farmwife (Jan 3, 2016)

Her blood sugar........ it's not coming up. Can that be crohn's related? It's staying at 42-45. It's being treated every 15 minutes.


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## Maya142 (Jan 3, 2016)

Oh no, your poor girl!! Thinking of you :ghug:.


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## pdx (Jan 3, 2016)

So sorry to hear this.   Hope she starts feeling better soon.  :ghug:


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## my little penguin (Jan 3, 2016)

Blood sugar shouldn't be crohns
Let us know what the docs say


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## my little penguin (Jan 3, 2016)

Is she at the kiddie hospital where her Gi is or the local adult hospital ???


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## CarolinAlaska (Jan 3, 2016)

The low blood sugar doesn't make sense.  Are they finding anything else?  Are they going to test her for gastroparesis?


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## Maya142 (Jan 3, 2016)

I was also thinking that. They are allowed to take Zofran during the Gastric emptying test so they can keep the meal down.


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## Farmwife (Jan 3, 2016)

Mlp, it's not a kid hospital.
 But their in talks with her GI and rheumatologist.
She has visible blood in her stomach. 
Her x rays showed a lot of gas but no obstructions.
Her labs showed the low blood sugar and 
what concerns the doc is she had dropped in her level of bicarbonate (sp?).
 I guess it's was a sizable drop and he's not sure why. 
She's had no vomiting or diarrhea which can affect this level.

They are giving us a room........ finally.


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## my little penguin (Jan 3, 2016)

Not understanding why she isn't at a kiddie hospital isn't there another one in the state close to you ??
She is complicated adult hospitals can't handle complicated kids period
They do not have pediatric specialists to watch over her care


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## Optimistic (Jan 3, 2016)

Farmwife,

I'm sending positive thoughts, energy, prayers, and everything I can think of to Michigan...for wisdom for the Drs to figure this out, healing for her, and clarity of mind for you to navigate this maze and make decisions. 

I hope things turn in right direction soon.


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## Maya142 (Jan 3, 2016)

M has had low bicarbonate. In her case, it was because of malnutrition. Has Grace been getting her G-tube feeds?

I'd also urge you to get her transferred to a children's hospital when things are stable. Everything is different with kids - JIA is treated more aggressively than adult arthritis and gastric emptying values can be different for adults and kids for example. 

It really helps to have pediatric specialists particularly because she is so complicated and because they haven't figured out what's going on.


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## my little penguin (Jan 3, 2016)

^^^ yeah that !your Gi and Rheumo can help with the transfer


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## kimmidwife (Jan 3, 2016)

FW 
 I have to agree. Ask them to transfer her to a kids hospital.


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## Farmwife (Jan 3, 2016)

We'll come up with a game plan tomorrow.
Grace is more comfortable but looks so pale and tired.

Heres to a long night of uncomfortable sleep in a hospital recliner that should be outlawed.


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## pdx (Jan 3, 2016)

My heart goes out to you--hope tomorrow is better than today.


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## my little penguin (Jan 3, 2016)

Hugs
So glad she is more comfortable 
Our kiddie hospital thankfully has couches that convert to full twin beds
Plus a twin trundle that pulls out


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## DanceMom (Jan 3, 2016)

Are they offering an opinion of what's going on? Could this be a virus? I hope you both get good sleep and tomorrow brings answers and relief.


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## Farmwife (Jan 3, 2016)

Lol, the docs came in and talked about a possible transfer down state.

So far the rheumatologist on call said the GI problems are to blame.
The GI on call never called the docs back. Grrrrrrr 
I'll be calling everyone tomorrow.


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## Maya142 (Jan 3, 2016)

If they're moving her, can you get her to the hospital where her GI and rheumatologist are? So that they actually communicate (with you and with each other!)? Our doctors are horrible at communicating with each other and they are at different hospitals so it's a real pain when M is inpatient.

Hope you're able to sleep - we have couches that become twin beds here too! A recliner sounds awful!

Glad she's more comfortable :ghug:. Will be thinking of you.


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## CarolinAlaska (Jan 3, 2016)

> Heres to a long night of uncomfortable sleep in a hospital recliner that should be outlawed.


Another reason to request transfer.


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## Sascot (Jan 4, 2016)

On no, so very sorry to hear that. Thinking of you both. Hope her treatment improves or you get a transfer!


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## Tesscorm (Jan 4, 2016)

So sorry to hear this. :ghug:  I hope the transfer is happening smoothly and you are both more comfortable soon!  

How is she doing?


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## Maya142 (Jan 4, 2016)

How's she doing today Farmwife? Any news?


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## Farmwife (Jan 4, 2016)

We're home!
Night and day difference in Grace.
Still not out of the woods but she has many appointments set up for the next two weeks
 to help this flare get under control.

She is back to a complete liquid diet. 
The GI isn't totally convinced of what is causing her stomach delay but we'll discuss it in detail next week. 

Her rheumatologist also wants her back for a visit but all this resting gave had done seems to have help her JIA. 

Thanks everyone for the well wishes!!


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## kimmidwife (Jan 5, 2016)

Very glad to hear she is better and home!!!! Hoping these new appts give some answers!


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## Farmwife (Jan 20, 2016)

Tomorrow Grace turns 7!!! 
She's already planned the day down to the epic size party she wants with her stuffed animals.

However, it will be a no food party as she's on formula.
We meant with the new GI NP 
and she doesn't think Grace has anything serious stomach wise because 
she would be vomiting non stop. :ybatty:
But does want Grace to stay on formula to give everything time to settle.:ymad:


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## Maya142 (Jan 20, 2016)

You can have Gastroparesis without vomiting. M only vomited rarely and her gastric emptying test showed clear Gastroparesis. Can you get a second opinion? Or just ask for the gastric emptying test?

Hope she has a happy birthday!!


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## pdx (Jan 20, 2016)

Happy birthday, Grace!


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## Jmrogers4 (Jan 20, 2016)

Happy Birthday Princess Grace


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## my little penguin (Jan 20, 2016)

Happy birthday


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## Sascot (Jan 21, 2016)

Happy Birthday to Grace :birthday2:


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## my little penguin (Jan 21, 2016)

Why are you seeing an NP instead of a Gi ???
We see a np in other specialities where Ds has minor issues but not things that there are major issues like Gi or Rheumo ?
Last time I read your posts grace  seemed complicated


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## CarolinAlaska (Jan 21, 2016)

:banana::banana::bdayparty::banana::banana:


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## Farmwife (Jan 21, 2016)

The GI didn't come to our area this time. It was her NP. 
I've already received an email back from the GI discussing points we talked about.
Nothing brought up on her nausea but I'll be calling next week with an update to the GI.


Grace is so happy, she got a big girl bike but she has to go to the doctors this afternoon because her urine is either dark yellow or slightly green"ish". I'm thinking Uti.


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## CarolinAlaska (Jan 21, 2016)

Hug


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## Tesscorm (Jan 21, 2016)

:rosette1:Happy Birthday!!!:rosette1:


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## Farmwife (Jan 21, 2016)

UTI with possible kidneys involvement. We won't know until 24 hour mark.
We were sent home with a huge list to watch for.
She's place on antibiotic every 8 hours for the next 8 days.
Other than that she's happy. Ya wouldn't know she has any issues.

She was hilarious and stretched out on the doctors table and announced...
This is so NOT how to spend my birthday!!!:rof:


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## my little penguin (Jan 21, 2016)

Does she have a nephrologist or urologist for as often as she has uti and kidney issues ?


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## Pilgrim (Jan 21, 2016)

Farmwife said:


> UTI with possible kidneys involvement. We won't know until 24 hour mark.
> We were sent home with a huge list to watch for.
> She's place on antibiotic every 8 hours for the next 8 days.
> Other than that she's happy. Ya wouldn't know she has any issues.
> ...


Love it! Princess for life! You have some plan to trick future suitors? 

Hope she feels better soon.


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## Sascot (Jan 22, 2016)

Hope the antibiotics kick in soon, glad she is happy and loves her bike. I do miss birthdays from when they were younger, they get so excited about their presents.


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## CarolinAlaska (Jan 22, 2016)

Poor girl!  She is right!  I hope you didn't have to be there long.


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## Farmwife (Jan 22, 2016)

The urine culture came back with e.coli. Good thing we took her in!!! Doors uti's clear up quick for your kids?


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## Maya142 (Jan 22, 2016)

M had a UTI about a year ago. It wasn't bad at all though - she was only on antibiotics for 5 days I think and after that she was fine.

Hope Grace feels better soon!


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## kimmidwife (Jan 23, 2016)

Happy Birthday Grace!!!!!!
I hope she feels better fast!!!!!


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## CarolinAlaska (Jan 24, 2016)

They're pretty easy to treat.  Is your daughter doing better?


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## Catherine (Jan 25, 2016)

My middle daughter was on antibiotics for 12 months for UTI.  But she already had scarring on one kidney from a single kidney infection at 2 years of age.


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## Farmwife (Feb 12, 2016)

So Grace had a rheumatologist and GI visit a week or so ago.
Under the GI's instructions Grace finished anther round of EEN.
 She did great and the pain went away ( for the most part).
But.....................
We tried putting Grace on a limited food again but right back to nausea and pain.
I can't figure it out. 
I guess it's back to EEN and a talk with a dietitian.
 The GI said scopes will be in her future if we can't get this under control.

Rheumatologist land........................
Grace had yet another new dx of JIA ( juvenile idiopathic arthritis) with ERA (enthesitis-related arthritis).:yfaint: Not surprised but still hate it! He did say that Grace is special because mostly boys get this type.:cool2: gee I'm thrilled!!!!

I pray y'all are doing well. I always check in when I can. Hugs to all.:ghug:


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## Maya142 (Feb 12, 2016)

My girls both have that type of arthritis. That is the same as JSpA. It is more common in boys, but we have met MANY girls with it over the years. The treatment is the same - anti-TNFs and if peripheral joints are involved, immunomodulators like MTX or Sulfasalazine. NSAIDs are used in kids without IBD usually.

Have you asked about the gastric emptying test? Scopes won't show gastroparesis, if that is the problems.

Wanted to add that it is quite common for young kids to be diagnosed with polyarticular JIA and then switch categories as they get a little older and develop more JSpA like symptoms - like SI joint pain or enthesitis. With very little kids, it is often hard to distinguish between the subtypes and the arthritis becomes more "differentiated" as they get older.


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## my little penguin (Feb 12, 2016)

^^^^ yeah that 
JIA is just the bigger term where all the subtypes fall under 
Basically any kid who has Ibd automatically gets the JSpA dx when they fall under JIA umbrella .
As Maya142 said all the same treatment .
Did they test for hla b27 ?


When you say limited food 
Is it by the amount of calories , type of food ?
Number of times eating , length of time and calories between meals , fat/fiber content etc???

With Ds we had to only add one new food for a few days - make sure he tolerated it then add a different food and not a combo 

It took a while ( months ) to figure out foods that were just not tolerated at all

Good luck


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## Farmwife (Feb 15, 2016)

Sorry for the last reply, Grace got sick over the weekend.

Limited as in very few foods that she's even willing to eat ( rice, chicken,  chicken hot dogs, yogurt ( the special kind that helps the gut), salted crackers with peanut butter).
We've been thru this all before. For a year we did slow reentry to food when she was 4-5. That why she had her feeding tube. Worked with a dietitian back than too.
But we might have to do another like you've done.
Maya, no mention of the test yet but when we meet in a few weeks I'll know better on how she's doing. I'm curious on what it will show.


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