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Imuran... here we go!

Farmwife

Farmwife

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!
 
Maya142

Maya142

Moderator
Staff member
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!
 
Farmwife

Farmwife

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?
 
pdx

pdx

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!
 
Maya142

Maya142

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Staff member
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!
 
Farmwife

Farmwife

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:
 
Maya142

Maya142

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Staff member
: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!
 
Maya142

Maya142

Moderator
Staff member
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?
 
Farmwife

Farmwife

: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!:eek:

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:
 
Maya142

Maya142

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Staff member
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!
 
Lady Organic

Lady Organic

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Location
Montréal, Canada
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...
 
Farmwife

Farmwife

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.
 
Maya142

Maya142

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Staff member
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.
 
Farmwife

Farmwife

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.
 
Maya142

Maya142

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Staff member
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.
 
Jmrogers4

Jmrogers4

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
 
Catherine

Catherine

Moderator
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.
 
Farmwife

Farmwife

: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.
 
Maya142

Maya142

Moderator
Staff member
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!
 
Catherine

Catherine

Moderator
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.
 
Farmwife

Farmwife

Catherine said:
Have you had any blood tests since starting Imuran?
Click to expand...
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:
 
Catherine

Catherine

Moderator
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:
Click to expand...
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
 
Maya142

Maya142

Moderator
Staff member
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.
 
CrohnsKidMom

CrohnsKidMom

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.
 
Farmwife

Farmwife

: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. :cool:


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

CarolinAlaska

Holding It Together
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!!!!!
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. :cool:


Moral of the story parents,
Double check everything!!!!
Click to expand...
That is the beauty of this forum, isn't it! These docs are so swamped, stuff like this is becoming common...
 
Farmwife

Farmwife

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:cool: 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?
 
my little penguin

my little penguin

Moderator
Staff member
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
 
Maya142

Maya142

Moderator
Staff member
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.
 
Farmwife

Farmwife

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!
 
Maya142

Maya142

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Staff member
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.
 
Maya142

Maya142

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Staff member
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.
 
Maya142

Maya142

Moderator
Staff member
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.
 
Catherine

Catherine

Moderator
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.
 
Farmwife

Farmwife

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?????
 
Jmrogers4

Jmrogers4

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.
 
Maya142

Maya142

Moderator
Staff member
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!!
 
Farmwife

Farmwife

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?
 
Lady Organic

Lady Organic

Moderator
Staff member
Location
Montréal, Canada
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.
 
CarolinAlaska

CarolinAlaska

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

Farmwife

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?????
 
Maya142

Maya142

Moderator
Staff member
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:.
 
Maya142

Maya142

Moderator
Staff member
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.
 
FrozenGirl

FrozenGirl

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.
 
Farmwife

Farmwife

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.
 
Maya142

Maya142

Moderator
Staff member
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
 
Lady Organic

Lady Organic

Moderator
Staff member
Location
Montréal, Canada
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.
 
Farmwife

Farmwife

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
 
D

DanceMom

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.
 
Maya142

Maya142

Moderator
Staff member
^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.
 
my little penguin

my little penguin

Moderator
Staff member
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
 
Farmwife

Farmwife

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.
 
Farmwife

Farmwife

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!
 
Maya142

Maya142

Moderator
Staff member
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?
 
Farmwife

Farmwife

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.
 
Sascot

Sascot

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.
 
G

Gmama

Location
Pennsylvania
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!
 
Farmwife

Farmwife

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!
 
Maya142

Maya142

Moderator
Staff member
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.
 
D

DanceMom

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.
 
Farmwife

Farmwife

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?
 
Maya142

Maya142

Moderator
Staff member
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?
 
Farmwife

Farmwife

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.
 
Farmwife

Farmwife

my little penguin said:
But didn't she go to mayo a year ago or so
Click to expand...
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
 
Maya142

Maya142

Moderator
Staff member
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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