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Back Pain


Mon, May 17, 2010 10:54 PM

Any one with little ones ever had them chronically complain of back pain?  We are headed back to the Rheumatologist early because it is really bothering her.  I'm always hoping it is a weird coincidence.......


Claire's Mom

FPO azmom
Joined Jul 20, 2009

Tue, June 29, 2010 9:38 PM

 Reply posted for sraymom.

Hi!  I'd be happy to share.  Do you want to email me?  My email is julie@h4ki.org.  


Claire's Mom

FPO azmom
Joined Jul 20, 2009

Mon, June 28, 2010 12:00 AM

 Reply posted for AZMOM.

Hi Claire's Mom,

I have been reading posts and replies and I'm looking to connect with another mom - it appears we have similar situations.  My daughter has UC (not definitive as to UC or CD quite yet) and is 10 years old.  She was taking Colazal that worked great for her for 3 years.  She had a flare recently and now the doctor wants to put her on 6-MP.  I am a nervous wreck about it but from what I've read it seems rather safe.  How long has your daughter been on it?  What is her age?  Thanks for any information!

Steph's Mom

FPO sraymom
Joined Jun 28, 2010

Thu, June 03, 2010 12:00 AM

 Reply posted for Lizzies Mom.

Hey Lizzie's Mom - Hope you get this.  The Neurontin has brought great relief.  A couple of weeks ago, I promised her a "no ouchies" party if we could have a day without any pain.  Well, tonight we partied like rock stars.  ;-)


So hopefully we'll be able to wean it back down again in a couple of weeks.  We'll see......  She is feeling great today though and I'll take it.

Claire's Mom

FPO azmom
Joined Jul 20, 2009

Thu, May 27, 2010 12:00 AM

 Reply posted for AZMOM.

AZ Mom,

Very bizzarre to say the least.   My mom suffers from neuropathy in her feet too (diabetes).   She uses geranium oil from the health food store topically for some relief. 

I pray every day for All of our children.  I would take it in their place in a New York minute.

Hang in there.  Stay well.

Lizzies Mom

FPO lizzies mom
Joined Sep 9, 2009

Wed, May 26, 2010 8:19 PM

 Reply posted for Lizzies Mom.

Well, here's what you wouldn't expect.  Her spine is fine and no arthritis in the c-spine.  It appears to be some sort of neuropathy.  We are already treating that in her feet at the minimum dose of Neurontin so we are upping it to see if her neck calms down and then if it does, giving it a couple of weeks and seeing if we can reduce the dose again.  


Very weird.  I'm relieved but yet puzzled.  

Thanks for caring.

Claire's Mom

FPO azmom
Joined Jul 20, 2009

Sun, May 23, 2010 9:12 AM

 Reply posted for AZMOM.

I can sense your frantic, I would be too!   I guess the only thing you can do is wait, which we have all had to do at one time or another, and it stinks.  

Maybe stay off the computer.   I remember a time when the info out there was just way tooo overwhelming.   I was obsessed, and it was unhealthy.  Sometimes the info on the internet paints a very inaccurate (worse case scenario) picture.  

Keep doing what you are doing, you're doing great!  I'll keep you all in my prayers. 

Lizzies Mom 

FPO lizzies mom
Joined Sep 9, 2009

Sat, May 22, 2010 12:00 AM

 Reply posted for Lizzies Mom.

Hey Lizzie's Mom - No news until after the appt Weds.  I did, however, stay up way too late last night reading about pediatric neck pain.  See - I finally figured out it isn't her back - it's her neck.  She can't look up at the ceiling.  And, her right knee is a little swollen now and she is complaining that she can't get it all the way straight without pain.


Back when she was 3, her official dx was polyarticular JRA, RF+, ANA+.  So my reading has revealed that children with polyarticular disease are at risk for cervical involvement.  I keep hoping I'm wrong.  Her Rheumatologist said in the winter "We'll see how this goes but these Crohn's meds aren't really the best for addressing the arthritis issue."  We (me, her specialty docs, my family) were/are still all hoping that really her arthritis was secondary to the Crohn's and that if the Crohn's was controlled, the arthritis would stay quiet.  

Time will tell.....   I'm sure you can tell I'm feeling a little frantic.  When I hugged her last night, her head tilted back (total accident) and she cried and cried.  It just broke my heart that I hurt her putting her to bed!

Thanks for listening. 

Claire's Mom

FPO azmom
Joined Jul 20, 2009

Fri, May 21, 2010 12:00 AM

 Reply posted for AZMOM.

AZ Mom,

Keep us updated of next weeks appt.   In the meatime, do you think she can get some relief from a warm bath with epsom salt?   It may be worth a try.

Be well...

Lizzies Mom 

FPO lizzies mom
Joined Sep 9, 2009

Thu, May 20, 2010 7:18 PM

 Reply posted for AZMOM.

I don't know to much about this disease. I only know that support is what is needed.You are my first to write to. I learned when I was worried for my son during his colonoscopy.Someone told "take baby steps" my how I needed those words. I will pray for you. I am now part of this journey.

Ramon's MoM

FPO labanda
Joined May 20, 2010

Tue, May 18, 2010 6:38 PM

 Reply posted for Lizzies Mom.

Thanks, Lizzie's Mom, for the reply.  I'm still hopeful but the realist in me doesn't think it is coincidental either.  I appreciate (as always) your honestly and empathy.  


She did have a dexascan in the fall and all was well with bone density at the time.  We have continued the extra calcium and D even after the end of the steroids because her neurontin can deplete both over time.  

Back in the early days of her arthritis, all her joint problems were peripheral and her spine, hips and shoulders weren't affected.....  I guess somehow I thought if the joint issues came up, they would be the same.  The Rheumatology nurse says "not necessarily" and said he wanted to see her.  So we'll see next week.

Thanks again for your listening ear and support.

Claire's Mom

FPO azmom
Joined Jul 20, 2009

Tue, May 18, 2010 5:09 PM

 Reply posted for AZMOM.

Hi AZ Mom,

I'm sorry to say, but I don't think it is a weird coincidence.  I think back pain is a true symptom to add to all the others.   We haven't experienced it personally, however, every time we go to the doctor they ask any joint pain, back pain etc.   Hopefully either your rheumatologist or your gastro can prescribe or recommend some type of treatment.  

Does your daughter have annual dexa scans?   Lizzie  does and for the last two years she suffered some setbacks /density loss.  Because of that, she has to take Calcium / Vit D3 supplements and do weight bearing activities (she prefers gymnastics) to try to build up her bones. 

Just think of it as another "blip", this too will come under control.  I'll say an extra prayer.

Lizzies Mom

FPO lizzies mom
Joined Sep 9, 2009

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