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Crohn's Disease Forum » Parents of Kids with IBD » Imuran... here we go!


 
11-18-2015, 07:19 AM   #61
Maya142
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MRI's for her worst joints. That's what we do with M.
11-18-2015, 11:32 AM   #62
CarolinAlaska
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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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*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
11-18-2015, 06:05 PM   #63
Farmwife
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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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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
11-18-2015, 06:18 PM   #64
Maya142
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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 .
11-18-2015, 06:19 PM   #65
Maya142
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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.
11-18-2015, 06:30 PM   #66
FrozenGirl
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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.
11-18-2015, 06:30 PM   #67
Farmwife
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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.
11-18-2015, 06:41 PM   #68
Maya142
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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-cont...r-Families.pdf

Here are a few more links:

http://www.providencemedical.com/vne.../53d98b09b8cb3

https://docs.chocchildrens.org/cause...tion-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-You...lonnie+zeltzer
11-18-2015, 08:57 PM   #69
Lady Organic
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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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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
11-18-2015, 09:06 PM   #70
Farmwife
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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
11-18-2015, 09:46 PM   #71
DanceMom
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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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11-18-2015, 09:50 PM   #72
Maya142
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^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.
11-18-2015, 10:58 PM   #73
my little penguin
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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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11-28-2015, 07:35 PM   #74
Farmwife
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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.
11-28-2015, 07:37 PM   #75
Maya142
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Sounds like an abscess. I'd call her GI as soon as possible.

Sending hugs Farmwife!
11-28-2015, 07:49 PM   #76
Farmwife
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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!
11-28-2015, 07:53 PM   #77
Maya142
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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?
11-28-2015, 08:01 PM   #78
my little penguin
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Call the on call Gi
Since you have more
Than a day until you could speak to the regular Gi
11-28-2015, 08:10 PM   #79
Farmwife
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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.
11-28-2015, 11:49 PM   #80
kimmidwife
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FW,
Sorry to hear about this. I would call right away especially if she has a fever. Keep us posted.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
11-29-2015, 12:37 AM   #81
CarolinAlaska
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Sounds like a furuncle or boil-like thing. I wouldn't let it go long, like they said.
11-29-2015, 08:35 AM   #82
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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.
11-29-2015, 04:19 PM   #83
Gmama
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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"
Hopeful that it will be a quick & painless fix for your sweet girl!
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12-02-2015, 07:03 PM   #84
my little penguin
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What did the doctor say ???
12-02-2015, 07:17 PM   #85
Farmwife
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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!
12-02-2015, 07:20 PM   #86
Maya142
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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.
12-02-2015, 07:33 PM   #87
my little penguin
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Good luck on the therapy
12-02-2015, 08:49 PM   #88
DanceMom
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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.
12-02-2015, 10:44 PM   #89
Gmama
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So happy to hear your news! One less thing to worry about is right!!
12-03-2015, 04:14 AM   #90
Sascot
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Hope the therapy goes well. Glad the abscess is smaller.
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Crohn's Disease Forum » Parents of Kids with IBD » Imuran... here we go!
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