Arthritis and Therapy Question???

[Farmwife]

Since many kids here have an arthritis as a symptom I wanted to ask this question.

Does their Rheumatologist still ask your kid to stay in physical therapy when in remission?

We meant with a new PT lady for grace.
She believes my dd is stable and doing well and doesn't need PT but the Rheumy said he wants her in PT, even when remission for awhile.


Of course the PT lady didn't get to see my dd limping in pain tonight.:ymad:

 

[Maya142]

Yes, both my daughters do PT when they're in remission (though I'm not sure either of them has been in remission - none of their rheumatologists have ever used that word for them!)

The older one (S) is currently doing remarkably well and though she's supposed to do PT with a busy college life she doesn't go very often (maybe twice a month, more during winter/summer break).

M has not been in remission for quite a while, but she still did PT when she was doing very well on Humira and MTX.

I would listen to the rheumatologist not the physical therapist - honestly we have yet to find a good PT that knows a lot about juvenile arthritis/AS.

 

[my little penguin]

^^^^ yeah that
If you get the raising a child with arthritis book
Arthritis foundation sends it free with the backpack
Basically pt or structured exercise is just as important as meds.
It keeps full range of motion , muscle tone ( which JSpA have less of) , joints in check.
DS does not do official pt but that is because Rheumo knows he has competitvely swim practice which includes 15 minutes of stretching plus 1 hour 15 minutes of drills in the pool.
He can practice up to 6 days a week but we aim for 3-4.
He also has therapy exercises we do for his hands plus daily wax.
And hot packs
Additionally he does cello practice for habd strength
Granted DS doesn't know these are pt activities that his Rheumo strongly encourages .
He just thinks they are fun things to do.

 

[Maya142]

Yes, if you can get her active (swimming is best) when she's young, do it! Both my daughters enjoyed exercise so much more than PT (both girls played soccer, S still plays recreationally, M does not).

 

[Twiggy930]

Around here we encourage our son to do sailing in the summer as a form of PT for his arthritis. It involves lots of stretching of his back and all the tying of knots is good for his hands. An added bonus is that our son finds being on the water calming/rejuvenating and that helps with his overall stress level which helps everything all around. I have had terrible luck trying to get him to remember any exercises that PT might give him to do at home. This is getting especially hard to police now that he is entering teenage years...

 

[Farmwife]

Another arthritis mystery.

I felt a bump/lump/nodule by my dd knee cap.
It was deep inside, hard, about the size of a corn kernel, not painful but was in an area that was slightly swollen. It was there for 3 days but is gone today.
But.......................today her other knee is swollen, painful and had to be wrapped up just to get her to walk.

has anyone had issues with lumps/bumps/nodules by joints???

Waiting to hear back from the doc about this.

 

[Maya142]

I have heard of rheumatoid nodules with Rheumatoid Arthritis - not sure if kids get them? Is Grace RF+? It's pretty rare for kids that age to be RF+, I think. We've had swollen knees (many many times!) but never any sort of lumps.


Hope the doctor has some answers and Remicade kicks in SOON!

 

[Farmwife]

The Rheumy nurse called and feels the lump was from inflammation.
Then she said that injections in the knee could be an option
but I don't feel we need to cross that bridge yet.
The knee seems a bit better today.

has anyone done the injections, did they help?
Maya I thought your girls did?

 

[Maya142]

Yes, M had an injection in her knee when she was first diagnosed (she also had it aspirated - they removed the fluid). It made a HUGE difference, her knee didn't bother her much for months (maybe even a year?).

She has also had her SI joints injected but that was much less successful. For her knee injection she was awake and said it hurt but dealt with it fine - her rheumatologist and the nurse distracted her and once the shot was over, it didn't really hurt at all. For the SI joint injections, they put her to sleep. I'm not sure what they do with little kids.