More problems

[upsetmom]

M has been complaining of sore knees, back and ankles on and off for a few years. Lately her knees have been that sore she hasn't been able to bend them. Over the years we always thought it was related to her crohn's but when we saw the GP the other day she thought something else might be going on so she referred us to a physiotherapist. This is what we were told by the physiotherapist. Her left knee cap isn't sitting in the right position, her back has a few joints out and her left hip is out of place..:yfaint: I'm actually kicking myself why l didn't push for further testing over the years because when M was born she had a "clicky hip" and wore a harness for 3 months. After 3 months we were told everything was ok, now l'm wondering if everything was resolved back them.

 

[Farmwife]

Can you get her into see a rheumatologist? They should be the ones that take charge.
I hope she's feeling better soon.

 

[Tesscorm]

If it isn't arthritis related, would a rheumatologist be able to help?

Did the p/t therapist suggest a treatment plan? Is it the positioning of her knee cap that is throwing her alignment off and causing her back and hip problems?

Hugs... it's hard to deal with something new. :ghug:

 

[upsetmom]

My original plan was to get a referral to a rheumatologist but when the GP suggested the physio l thought she knew what she was doing.

Is it the positioning of her knee cap that is throwing her alignment off and causing her back and hip problems?

Tess the other way around. He thinks it's the back or the hip causing the problems. He worked on the back and gave her exercises to do till we see him next week. He said by next week we should know if it's the back causing the problems.

I didn't ask many questions as l was lost for words. I thought we'd go see him and be told it was crohn's related. Now that l'm thinking a bit more straight l have a whole list of question for him.

 

[Maya142]

Given her symptoms, I would still push for a referral to the rheumatologist. A PT (or GP) can't diagnose arthritis and with Juvenile Spondyloarthritis the signs can be very subtle (you don't necessarily have to have obvious swelling). It may all be mechanical pain that a PT can help with, but you can't really know for sure until you see a rheumatologist. It's important to treat JSpA aggressively, so if she does have it it's really important to know.

If not, I'm sure the PT can help! Ask the physical therapist for a TENS unit - M (my M!) uses one for joint pain and it helps.

 

[Catherine]

I think the GI, is the one who is mostly to give the referral.

Sarah had a upper back pain and GI mentioned a referral if it continued but if the pain had been lower a referral would have been given at the time.

 

[DustyKat]

Whilst I am not doubting what the physio is saying given M's Crohn’s diagnosis I would be ruling in or out whether the joint pain is connected. Small joint pain (spine, fingers etc) will run independent of intestinal inflammation whilst large joint pain (knees, ankles and so on) will run parallel with it.

Good luck hun and no!, you played now role in this! :ghug:

Dusty. xxx

 

[upsetmom]

I spoke to the nurse on Friday because l needed the results from M's bone density scan, as l'm worried something might happen with her having low bone density and the physio manipulating her back. Nurse wanted to know if M had any tummy troubles at the moment, l told her M has pain most days and on and off diarrhea.. M needs to have a blood test as the nurse said she might be flaring and the joint pain is connected. So now l'm confused about what's causing this joint pain.

 

[crohnsinct]

Weird and frustrating! Does this nurse work for the same doc who told you it probably wasn't Crohn's related? In any event, good to get the testing done so you have all the facts. :ghug:

 

[upsetmom]

No, the nurse l spoke to works for the GI.

 

[Maya142]

You really need to see and rheumatologist AND test to see if she's flaring. There's really no way to know.

Small joint pain (spine, fingers etc) will run independent of intestinal inflammation whilst large joint pain (knees, ankles and so on) will run parallel with it.

I know this^ is often said, but both my girls had large joint involvement when they were first diagnosed (knees and ankle). M's IBD didn't become apparent until years later and does not flare when her AS flares. S does not have IBD at all.

In JSpA, kids generally have large joints involved at diagnosis and the spine becomes involved later - which complicates the situation even more when IBD is also involved and you're trying to figure out whether is arthritis runs parallel to it or not!

 

[DustyKat]

I just can’t see past the fact that your lass has never been in remission…I personally would be looking to the Crohn’s EIM link before moving onto anything else.

Dusty. xxx

 

[Maya142]

Is she moving to an adult GI soon upsetmom? I can't believe they've just been ignoring her if she hasn't been in remission. I hope they can figure this out SOON, your poor girl :ghug:

 

[upsetmom]

We're hoping to move within a few months.

M was complaining of stomach and joint pain at every visit, but they never did anything apart from put her on flagyl. After a while she basically gave up telling them anything. It was always me telling them what was going on. At one point there was mention of changing to MTX but in never happened.

M was telling me the other day that she has become immune to pain. I asked her what she meant by that and she said she's in pain most days, sometimes a lot but she's so use to pain its become normal.

 

[izzi'smom]

Ugh. How sad-I am sorry for both of you.

Dd is similar-always tells doc she is fine, and I have to interject about how she isn't.

Hoping a new doc will help move her in a new direction.

 

[Catherine]

Can you have she write a letter to the GI?

Has she had faecal calprotectin done recently?

 

[upsetmom]

She'd never agree to writing a letter.


Never had a faecal calprotectin.

 

[Maya142]

I know the healthcare system is different in Australia (but that's about all I know about it!). Would it be possible for you to get a second opinion? Would you be able to set that up faster than switching to an adult GI? Or at the very least request a FC or scopes with your current GI?

My daughter says the same, that she doesn't remember what it's like to not be in pain. These poor kids. It breaks my heart.

 

[upsetmom]

Maya getting another opinion at this point would probably be a waste of time as M turns 18 in September and we would have to move on anyway. I don't know how long the current wait is to see the adult GI, we're still waiting for a referral from our current GI. M had scopes done in September which showed no improvement since dx. Just wondering would a F/C be helpful when we know there is still inflammation present.

 

[DustyKat]

I hate with a passion that our kids have to put up with so much that the abnormal becomes just another part of life. So much so that it doesn’t even rate a mention!

Given that there will likely be a wait on seeing on the adult GI I would have the GP do a referral now and get a booking in. She can see an adult GI from 16 on so age won’t be an issue and after the first consult you should be able to ‘work’ the system better.
I know all docs are different but our GI has IBD appointments set aside from others so the wait time isn’t nearly as long for routine appointments.

Dusty. xxx

 

[CarolinAlaska]

Maya getting another opinion at this point would probably be a waste of time as M turns 18 in September and we would have to move on anyway. I don't know how long the current wait is to see the adult GI, we're still waiting for a referral from our current GI. M had scopes done in September which showed no improvement since dx. Just wondering would a F/C be helpful when we know there is still inflammation present.

Sounds like it might be time to have a heart to heart with M's doctor. There is no reason why she should have to wait until September. If her current regimen isn't working and never has, it should be changed.

I don't see the point in doing the FC unless she is going to change meds. It could then be used for a baseline and then follow it quarterly to see if she is improving.

 

[Sascot]

Really hope the next GI takes things more seriously. My daughter is undiagnosed but says the same, "I'm in pain every day, so what's the point in telling you. I'm used to it". It's awful that any child should have to just put up with pain every day

 

[crohnsinct]

Agree with all the others! When T was undiagnosed she stopped complaining because no one ever listening. We went a whole year thinking she was suddenly O.K. and nope...she was just suddenly quiet.

Praying your some one pays attention and your girl is on top of the world soon!

 

[lenny]

When the drs ask my son how he's been doing, and he says fine, they often seem surprised when I interject with a more negative answer. Some seem like they really only want to hear good news, not the truth.