Stephen... Remicade now...

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Thanks Maya. Perhaps I've read this here before because that was my thought when S brought it up - I just had a sense that manipulating joints might be a problem if inflammation was involved. :)
 
Tess,
I just saw this today. We lost power Friday and since then Internet has not been working properly. I am in agreement that a rheumo might be a good start. I would get on the cancellation list for the ortho as well that way just in case the rheumo wants him to see an ortho at least you will be on the list already.
 
Keep us updated Tess, will be thinking of you and S.

Wanted to mention a TENS unit if it hasn't already been mentioned. M uses hers a lot and likes it. It doesn't take away the pain but it helps. We got ours from our pain management doctor, but maybe a GP could prescribe one.
 
I have found well trained experienced physical therapists to be very good diagnosticians for musculoskeletal and nerve issues.
 
Will keep the tens unit and lidocaine patches in mind... whether we see rheumi or GP first.

And, S will continue with his therapist until we see rheumi. If it musculoskeletal only, we should begin to see some improvement. She is aware of all his issues and has been treating him for both shoulder and chest/ribs with both p/t and massage therapy. Until we know something definite, he'll keep going with this, the joint supplements and yoga. Hopefully, something will start to help... :)
 
Rheumi booked for Monday! Gotta say, his GI's hospital is amazing! Cardio apptmts were just as quick! I couldn't believe it when they called this morning with an apptmt for next week!

Anyway, am still hoping it'll be a waste of time and we're just dealing with some pulled muscles or something. :(

FWIW, to those who have joint pains... S said his chest was hurting a bit more yesterday and he'd forgot to take his Fast Joint Care Plus supplement. He took it last night/this morning and said the pain is noticeably less today. Just passing on the info in case this supplement really does help...
 
FW, Stephen bought it himself from a healthfood store.

Here is a link to the product and the list of ingredients. I'll be honest, while I always check ingredients, supplements, etc., I didn't in this case. When he told me about it, he'd already bought it and was in pain. I thought it was worth him trying to see if it would bring him some relief (hopefully, I don't regret my negligence! :eek:).

http://www.genuinehealth.com/store/us/fast-joint-care-extra-strength#.Vk50PnarTcs

Medicinal ingredients:
Biovaflex® natural egg membrane 500mg

AvoVida® avocado (fruit) and soy (seed) unsaponifiables (standardized to 30% phytosterols) 300mg

Bromelain (pineapple stem; 400 GDU/serving) 200mg

Other ingredients:
Cellulose, rice flour, magnesium stearate, silicon, dioxide.
 
We have used Tumeric for joint pain. To be honest, we didn't see a difference, but there are some studies that say it might help.

We also use fish oil capsules.

Before giving any supplements, Farmwife, check with your doctor!
 
Maya142 said:
We have used Tumeric for joint pain. To be honest, we didn't see a difference, but there are some studies that say it might help.

We also use fish oil capsules.

Before giving any supplements, Farmwife, check with your doctor!
Click to expand...

Good advice Maya! Thanks

Asking for my mother-in-law. Just had her knee replaced.:yfaint: I'll do anything to get the women moving faster! :yfaint:
Grace never took to supplementing to well. We did turmeric also but it cramped her up even worse.
 
:lol: Farmwife! I thought you were asking for Grace! Fwiw, my husband has had both his hips replaced and he swears by fish oil. He takes kiddie fish oil which is a liquid (disgusting but he doesn't like taking pills!) and he says it really works. My girls both take capsules but skip them every now and say they haven't felt a difference.

Might be worth a try!
 
S takes krill oil as well. However, he told me the woman at the health food store told him krill oil isn't as easily absorbed as other fish oil??? I did my research when S was dxed, do it's been a while... Does anyone know if there's a type of fish oil that's better than others?
 
Okay, so starting to wrap my mind around what may come from rheuma apptmt.

If this is jSpa/arthritis, what should I be asking?

1. What are treatment options?
2. Are their options other than meds? ie physio
3. Is a med used to take down current flare, ie steroids? Or just a maintenance med and allow the flare to slowly heal?
4. If it is costachondritis, is this always part of jSpa or AS, or could the costa be a random occurrance, perhaps related to crohns, but not to jSpa/arthritis
4. What else? I don't even know what to ask???

And, just a question in general... what is the difference between jSpa, AS and arthritis?
 
Any kid with any type of arthritis falls under the JIA umbrella ( think ibd )
Jspa ( 16 and under at dx )
Tendons ( entheses ) and joints are involved
No swelling required but can happen
No increased markers but can happen

AS damage seen on the si joint and spine/hips
 
Thanks MLP :)

If there's inflammation around his sternum and/or ribs, would this show on x-ray, ultrasound, MRI?
 
There are several different JIA subtypes:
Systemic
Polyarticular (which is what Grace has, Farmwife)
Oligoarticular
Psoriatic
Enthesitis related arthritis (which is JSpA)
Undifferentiated

Little kids sometimes switch categories as they grow up.

In adult SpA (diagnosed after 16) the hips or SI joints are usually involved first. Peripheral joint involvement is less common in adults but definitely does happen. People are different and I'm sure some have had rib pain as the first symptom but it is usually the lower back that hurts first.

People can definitely have costochondritis for other reasons.

Has he been tested for the HLA B27 gene? 90% of Caucasians that have AS are B27+. The number is lower with SpA and with other races.
 
Wanted to answer some more of your questions:

1. What are treatment options?
2. Are their options other than meds? ie physio
3. Is a med used to take down current flare, ie steroids? Or just a maintenance med and allow the flare to slowly heal?
4. If it is costachondritis, is this always part of jSpa or AS, or could the costa be a random occurrance, perhaps related to crohns, but not to jSpa/arthritis
4. What else? I don't even know what to ask???

And, just a question in general... what is the difference between jSpa, AS and arthritis?
Click to expand...

1. Treatment is typically NSAIDs and TNF inhibitors. Sulfasalazine and MTX are used, but more for peripheral arthritis (not involving the spine). It's very clear from research that biologics work better for AS.

2. Physical therapy and swimming can really help. Anything that gets you moving (low impact is better). Also a TENS unit, ice and heat of course.

3. Steroids are used but of course, we try to avoid using them. M has been on them a LOT in the last three years. We've used oral steroids, steroid injections directly into a joint (knee for example), steroid intramuscular injection and IV steroids.

SpA (spondyloarthropathies) are a family of diseases and AS is one of them. AS is radiographic SpA (i.e. there is damage visible on x-rays in AS). If there is no damage visible, then non-radiographic SpA (we tend to call it just SpA) is diagnosed. SpA can evolve into AS over time but may not.

They are treated the same except that anti-TNFs are only approved for AS right now, so doctors have to be creative to get them for patients with SpA. In countries like the UK, it is much harder. In the US, it's not that hard usually, but can be depending on the insurance company and the doctor. I think Canada is more like the UK in terms of strictness of the requirements for anti-TNFs but I'm not sure (anyway, thankfully S is Remicade for Crohn's!)

The TNF-inhibitors are slowly being approved for non-radiographic SpA too and this will change soon.
 
Thanks so much Maya! That is really helpful! Both your posts and MLP's link have really given me an understanding.

Well, we'll know more on Monday, although I imagine if she believes there is any concern, Monday will only be followed by further testing... :(
 
Very thorough apptmt! Spent a lot of time with 'physical therapist practioner' (?? didnt' quite hear her title when we met) and she checked all S's joints, took lots of measurements, asked lots of questions. And, then with rheuma. Consensus was that they aren't quite sure yet. He has some symptoms which might be IBD related inflammation but they're not 'textbook' symptoms and he's missing symptoms they'd likely see. So, could be 'mechanical', musculoskeletal, lots of his symptoms indicate that the pain could be derived from alighnment, misaligned rib, etc. but, again, not all his symptoms match this dx either.

So, rheuma is going to schedule a bone scan of his chest and SI to look for diffuse inflammation. If inflammation is localized, more likely to be an injury/misalignment. In the meantime, although she said she doesn't often do this, she recommended a chiropractor - said even if it is systemic inflammation, given his age, status, etc., she's not concerned re any damage from chiro. Also suggested a manipulative physiotherapist who would be experienced with maniputing joints, especially those that have been misaligned.

If it is a rib misalignment, a manipulative p/t would be able to feel this (forget if chiro would be able to feel this as well??).

So, now, I'll try to find a chiro and manipulative p/t near his school while we wait for bone scan.

Did ask about lidocaine patches - as S's pain was 4-5 out of 10 today (was 8-9 out of 10 last week), she said to call if the pain intensified again...

All in all, no good nor bad news... still checking.
 
Interesting that she's going to do a bone scan - they are not really used any more here. MRI's are much better for showing inflammation but of course, are more expensive. I'd push for an MRI vs. a bone scan if you think it's possible.

Glad you got in with a rheumatologist so quickly - crazy that an ortho had a year wait but a rheumatologist was just a week or so?!!

We have seen a PT that did manipulations and and manual work and it did help my girls. We haven't seen a chiropractor so not sure about that.

If S's pain is a 4-5, why isn't she giving him lidocaine patches?! They're pretty harmless as far as meds go. Did you ask about Voltaren gel or a TENS unit?

Hope you get some answers soon.
 
I'm guessing the bone scan vs. MRI because of scheduling. Non-urgent MRIs (ie I'm thinking in comparison to his heart MRI) can take months!! She said the bone scan can be scheduled quickly.

And, yes, crazy about the referrals/apptmt dates. I think there were some circumstances that contributed to that - ortho referral thru GP, rheuma referral thru GI in same hospital, ortho clinic seemed very high end, in the sense that they had 6 orthos on staff, with different specialties, extensive services like physio, chiro, sports med, etc. - likely this clinic is in demand, so more referrals going there. Plus, S's shoulder injury didn't show damage... so low priority. :( If we still need ortho, I'll look for another ortho, without all the bells and whistles' services.

Not sure why the hesitation re the patches?? I did ask re its safety with remi/crohns and she said no issue there. Given her response, I just assumed a 4-5 level of pain didn't warrant the patch??

When necessary, S has used voltaren. He knows to use it sparingly and, so far, hasn't caused a problem. He also likes Tiger Balm, not sure if it works for this but, has worked for his shoulder and prior back pains.

And, I forgot about TENS. :ybatty:

But, if his pain increases again, before scan follow-up, I'll just call back for a lidoderm prescription.
 
Some info on imaging. I'm sure if the bone scan shows something, they will be able to send him for further testing (if necessary). I have heard of a couple kiddos who have had bone scans to detect inflammation, especially if they can't have MRI's for some reason (one kiddo with a gastric pacemaker for gastroparesis, for example).

Preferred examination
Radiographs are the single most important imaging technique for the detection, diagnosis, and follow-up monitoring of patients with ankylosing spondylitis. Overall bony morphology and subtle calcifications and ossifications may be demonstrated well radiographically. The diagnosis may be reliably made if the typical radiographic features of ankylosing spondylitis are present.[3, 4, 5, 6]

Computed tomography (CT) scanning is useful in selected situations (eg, in equivocal cases of sacroiliitis and in cases in which subtle radiographic changes are present) and in the evaluation of complications.

Magnetic resonance imaging (MRI) is useful in assessing early cartilage abnormalities and bone marrow edema.

Limitations of techniques
Radiographs are limited in detecting early sacroiliitis and in demonstrating subtle changes in the posterior elements of the vertebrae.

CT scanning is useful in evaluating sacroiliitis, but normal variations of the sacroiliac joints may simulate the findings of inflammation. Because of its high radiation dose, CT scanning is not ideal for imaging long segments of the spine.

MRI is limited by its relatively poor ability to detect calcification, ossification, and cortical bony changes.

Scintigraphy has been used to detect early sacroiliitis, but there are conflicting reports as to its accuracy.
Click to expand...

A rheumatologist should be able to get you a TENS unit too.

Has S tried going in a pool or hot tub? That really helps my girls when they're in a lot of pain.
 
Well as much as we like definitive answers I guess it is good that you are on track for figuring this thing out and not waiting for that ortho appointment!
 
It sounds as though he is being well taken care of. The benefit other than a quicker test for the bone scan is that if inflammation is present in any other joints, it will show up. Sounds like the rheumi is being very thorough and making sure that a more systemic problem is not going on.

I hope Stephen starts to get helpful treatment soon.
 
Maya - S did a bit of swimming last year but, a few weeks ago, we mentioned that he couldn't go because of pain - now not sure if it was shoulder or chest pain. And, unfortunately, his apt doesn't have a bath, just shower. When he's at home, he's had baths with epsom salt and has said it helps. But, hadn't thought of it before, perhaps the pool he goes to has a hot tub??

And, I'm thinking as you, if the x-rays show something, that will lead to more testing (MRI?).

But, a comment rheuma made was a bit ironic... When S was going for heart MRI, had S ask his GP if GP could write a requisition to throw in an image of shoulder since it's all on the same side anyway. (Figured it would be 'too' efficient but may as well ask...) GP said 'no, MRI requisitions don't work that way'. :ymad: Today, rheuma asked if they happened to do chest images when they did heart MRI since it was in the same area! ...shows only women know how to multi-task! (Edit... sorry guys, I know truly not 'only' woman multi-task! :hallo3:)

And, thanks for the info on imaging! That's great info! You should post in the 'Tips & Tricks' or '101 things your GI didn't tell you' (forget what it's called ;)) thread - great info to have!

CIC - yes, although we don't have an answer yet, at least it feels like we are moving along ruling 'out', if not ruling 'in' yet. If the scans are as quick as it seemed, I'm hoping to schedule it over the holidays - save S from coming back again, just for one test. I know it may be delaying a bit but, in the meantime, he can start with the chiro and/or p/t.
 
Last edited:
Thanks happy :)

I didn't really have any expectations of what would happen in this apptmt but, it was certainly much more thorough than I'd expected! All in, we were there for 1.5 hours! I really liked both the practitioner and the rheuma - neither was quick to jump to either dx, and were happy to answer my questions, with no rushing. :)
 
I was going to say why not do it over Thanksgiving, but of course, that's over for you guys!
I would only schedule the scans sooner if he's in horrible pain and can't deal with it - otherwise a few weeks won't hurt.

That info is from Medscape: http://emedicine.medscape.com/article/386639-overview#a5

There is more info about bone scans and AS in case you're interested!

Our gym has a "therapy pool" - it's warmer (90 degrees) and used for PT and aqua exercise classes. M loves going in it - she just floats around, swims a little bit etc. The hot tub is even better but he should be careful about staying in too long and getting in and out - M's blood pressure drops and she gets very dizzy. Not sure S has that issue but since he's been seeing a cardiologist I thought I'd warn you.

M also loves PT in the water - it is easier on her body and can be a lot of fun.

I wish they'd done shoulder images when they did his heart - how very frustrating!

Other things - a foam roller, and exercise ball for stretches, thermacare wraps or heat wraps: http://www.warmbuddy.com/products/sports-therapy-wrap/

Really hope you get some answers soon - poor S has been dealing with this for such a long time!
 
I am glad he had a good appt. it sounds like the doctor was very thorough. Hopefully the bone scan will give some answers.
 
It sounds like she is looking at it from all angles....glad it was a good appointment and glad other measures were suggested while he waits for the tests....I'm sure he is ready to put this behind him!!! FWIW ortho ordered a full body bone scan of N when he first had an inflamed ankle that would not get better.....that was 4 years before he was diagnosed with crohn's, and it also showed some inflammation of the ankle that was not yet bothering him. At least it's probably a good preliminary test that can be done quickly.
 
I am relieved that she is looking at it from different angles. I was worried that a musculoskeletal cause might be dismissed too easily. If she had diagnosed arthritis very quickly, without fully exploring a musculoskeletal cause, I know I wouldn't have been convinced and would've driven myself (and all of you:eek:) crazy with my doubts! :)
 
How's S doing Tess? Any news on the bone scan? Were you able to schedule it?
 
Haven't heard back yet. I was going to wait out this week and call back on Monday, if I haven't heard.

In the meantime, spoke with S a few days ago and he said his chest/ribs are feeling much better (but pain not completely gone). :)... :ywow: He's been going to physio but keeps forgetting to ask if his p/t is a manipulative p/t (I did check and their clinic has a 2 or 3 listed as mani. p/therapists).

IDK???... was going to ask you all about the coming/going of the pain but... of course, arthritis does flare up/down, and muscles can heal and then get strained again! So... still waiting...

(Thanks for asking!! :hug:)
 
Yes, pain that comes and goes and even migrates to other joints is typical in JSpA.

But it could also very well be an injury that's healing (let's hope!).
Hope you get it scheduled soon!
 
Thanks! Certainly I'm glad it's feeling better but I don't want him to stop going to p/t because 'it's feeling better today'! (And, because he has exams coming up.) This feeling better/worse has been going on since July! But, in any case, we have to wait for scan so, if he's slacking a bit, perhaps any inflammation will show up more clearly on scan?? :)
 
Ahhh don't you love teens/young adults ;)? M loves playing doctor, she's recently decided she doesn't need her tube feeds even though her nutritionist said she does :ybatty:!
 
So true!! Right now, he's all good! :dusty: But, when it starts up again, he'll be frustrated, mad, sad, etc. But, I guess that's human nature...

And, I know a BIG reason S has stuck with the shakes is that they make his life more convenient! :lol: No need to make breakfast when he can grab a shake... hungry before game, no worries, grab a shake! :lol: I don't mind because he gets the shakes and, often, it's probably healthier than what he would've grabbed on the way. He's even had other friends/roommates say he's lucky to have them because they 'have' to make something to eat! :lol: I've had to tell him it's okay to share sometimes but, WTH, they're not cheap... I can't be supplementing all his friends! :yfaint:

Does M have to do it every night? When S did overnight feeds, he did it 5 nights per week - it gave him a bit of a break on weekends (or whatever night he wanted). Would it be possible for her to increase her daily calories but then cut out one or two nights? FWIW, S was taking in 1500 cal/night.
 
We're working on getting her calories up - she's eating about 1200 on a VERY good day, and about a 1000 normally. She needs 1800 to maintain her weight. Instead of doing 600 daily, we could do 1200 every other day, I suppose, I hadn't thought of that.

If she could drink shakes, I bet she would. It's just that the gastroparesis makes it very hard to eat or even drinking large quantities. It would take her all day to drink one shake and she only tolerates Neocate anyway (which tastes disgusting).

So she definitely needs to use her tube. I think once she loses a pound or two she'll come to her senses. Since she hasn't lost yet, she thinks she knows better than the nutritionist :lol:.

Glad S is still drinking his shakes - good for him!
 
Well, 'drinking' means he's only drinking one or two per day (250-500 calories), he was getting the 1500 cal when it was overnight feeds. I very much doubt he would be able to drink more than one or two shakes per day. Even though he likes the shakes, drinking more than one or two, at his convenience, is probably all he would manage orally.

What is it that she doesn't like about the tube overnight? S grouched about it once in a while but never complained too much... although, in the last year, he was beginning to lay the groundwork for refusing to do it once he went away to school. (We ended the overnights/started remi a few months before he left for school anyway.) It might help her having a night or two off per week. Having these nights off meant that S could stay over at a friends or have a friend stay over without worrying about it... or if he just didn't feel like doing it one night, there was no worries about it. (BTW, this is how it was suggested to us by our GI/nutritionist.)
 
She's just being cranky :lol: - she says she doesn't like being hooked up while she sleeps. She's managed just fine with it for the last few months, so this is just a phase I think. It started because we stopped the feeds to see how she'd do without them - she did ok for a few weeks but when we calculated her calories, she was still eating too little to maintain her weight.

I do think giving her a few nights off a week would definitely help - thanks! We'll try that.
 
Yes, S would say the same thing... smaller, crankier type complaints... didn't like being hooked up, cud hear pump, etc. But, yes, I do think having those couple of nights off helped. :)
 
Question re arthritis/bone scan...

S says his chest/ribs are much better. (But, this isn't the first time it's improved and then worsened again.) If we do the bone scan when he feels 'good', will inflammation still show on the scan? Can this be like IBD where you can have active inflammation but no symptoms?
 
I don't know for sure but I'm guessing it's better to have the scan when one's symptomatic. A negative scan when one's asymptomatic might not rule out inflammation causing the symptoms in the past.
 
That's what I was worried about as well... I'll speak to rheumatologist's office staff to see what they advise before booking scan.

He just had the stomach flu over the last couple of days with lots of vomiting... I was expecting him to say his chest/ribs now hurt again from the strain but he hasn't mentioned it. This in itself doesn't necessarily rule out a musculoskeletal issue but, I would've thought the strain from vomiting would have irritated any vulnerable muscles/tendons/ligaments in his chest/ribs??

IDK... wish I could buy my own imaging machines and just run pics whenever I want!! :lol:


(And, yes, the thought "oh no, is this 'flu' really just a flu or is it all connected" immediately popped into my head but, he says a number of his roommates and other friends have all had this in the last couple of weeks so... I'm thinking it's just going around.)
 
I know sacroilitis is often asymptomatic in JSpA kids. Not sure about chest/ribs? Also, I know an MRI would pick up past inflammation - erosions and such but I'm not sure about a bone scan since my kids have never had one.

It's probably best to ask his rheumatologist and see what she says.

Hope he feels better - the flu is miserable!
 
Like this hasn't been said enough times here.... GET COPIES OF RESULTS!!! :ymad: :ybatty: :ymad:

S had an infusion and had labwork Aug 1. His GI said labs at every infusion when S started remi (but later changed to every other infusion as told to me by remi coordinator), so after Aug 1, his next labwork would have been end of October. I've been slacking slightly in that I haven't been asking for EVERY test result (he's been stable, it's been two years, etc.) but I do ask once in a while. Well, now was the 'while'... and guess what - no labs done since Aug. 1!!! :ymad:

I'd started calling for results almost a month ago; because of his chest/ribs, I'd wanted to see if labwork was showing anything (and, it felt like it had been a while since I'd asked for copies anyway). Called early Nov but labs from end-Oct not in yet... told to call back in a week. Called the next week but happened to call the day the GI office was closed. Called the next week, assistant surprised they weren't back yet but said sometimes there are delays, call back please. As I wasn't really that worried re the labs (ie we were seeing cardio and rheuma anyway), getting a copy slipped my mind last week. As S now had stomach flu and he was concerned about crohns, it reminded me to get the results... called today and no labs have been run since Aug. 1!!

I explained a requisition renewal had been missed in the past and assistant says, yes, possible..., what date does your requisition show. Umm, what requisition?? Whole lot of confusion as to who has requisition - apparently, we are supposed to take requisition each time, however, in two years, I have NEVER been given a requisition! :eek: So, who has been sending in requisition??? Now THAT is the mystery!?!?? :ywow: When the renewal was missed last time, I spoke with the remicade coordinator and she dealt with it. She never said I should be the one renewing - she implied the infusion centre should have notified her/GI that the renewal was due! Today, assistant told me remi coordinator doesn't even deal with this so why did she renew?? Ugh!

I don't know the answer for how S has been getting labwork up till now!, but I believe it's been a total miscommunication - I know it's not MY misunderstanding! I DON'T make mistakes with this stuff! But, somehow, between GI, regular assistant, remi coordinator... no one mentioned that WE (me and S) are supposed to renew. :ywow: :ywow:

Seriously, I have been so on top of everything since he was diagnosed, how can something like this STILL slip through!?!?!?

Now, assistant sent me a requisition and asked me to get S to go asap since no labs since Aug. 1. And, with S's chest issues, stomach flu and his worries last night, they both have me anxious that something's been going on and no one's seen it! :yfaint:

On top of it all, when S started on remi, his GI said labs every infusion. When the issue came up with the renewal and the infusion centre didn't know S's lab orders, the remi coordinator told me every other infusion. Now, I wonder why she said every other infusion if she isn't even supposed to be involved in this?!?!?

I know this isn't my fault but, if something is up, I'll never forgive myself for not following up on every friggin' test! :ymad:
 
Last edited:
:(
Sigh, sometimes it is so hard to get simple things done in the 'system' and it takes way too much energy. Don't beat yourself up. On the bright side, this may help Stephen understand why you pay close attention to all the details of his care and why he should learn to do this too.
 
Yes, agreed! I've asked S to keep a watch on whether or not labs are run but he forgets, and sometimes I forget too. Since we have Aug.'s results, I think the only lab we missed was end of Oct.

I'm just annoyed that after everything I've tried to be on top off, something so simple as checking on labwork slips by! :voodoo:

Ugh, and poor S is NOT having a good time. Hurt his shoulder AGAIN tonight at gym. :( I've told him he absolutely HAS to slow down in trying to rebuild it. This is what always happens... feels better, he moves forward too quickly, hurts it again. Have asked him tonight to do it my way for 6-8 months - physio (standing apptmt weekly), light exercises, yoga... and then see how it is! For two-three years, he's been going two steps forward, two steps back! He's getting so frustrated and I'm worried he's going to do permanent damage to his shoulder. :(

Put into perspective, this stuff isn't the worst that can happen but has just been months of frustration for him and constant niggling worries for me. :ywow:
 
Doctors seem to really vary in terms of how often they check labs so hopefully it won't be a problem that he's "late" for his labs. [I don't think my son (on Remicade) has had any labs since June. He will get some in a couple of weeks. I think his doctor's routine is if you're doing well, an every 6 month visit with labs. ]

Hope the shoulder feels better soon and that his labs are all normal.
 
Sending hugs Tess! How very frustrating and what a confusing system!

I fully agree with your plan, I think very often kids go back to sports/weight lifting much too early. We were told it takes a long time for injuries to fully heal and even once they are healed, muscles are weak and those must be strengthened before getting back on the field (my girls played soccer ;) ). Really hope he'll do the PT and try to strengthen his muscles.

If it makes you feel better, many (most?) kids with JSpA don't have elevated ESR/CRP so even if he'd had the labs done, they wouldn't necessarily have shown anything of value if he does have arthritis.

I know that's not much of a consolation but don't beat yourself up! Things happen.
 
How frustrating! It's strange that they would expect you to even be involved with the requisition.
 
Thanks all. I think I just needed to release some of the frustration! A lot of you know, better than I, how time consuming it is to organize apptmts! Since May, S has been dealing with one issue or another... there have been a number of GP apptmts and tests, cardio apptmts and tests, couple ER visits, follow up apptmts, rheuma apptmt... it's always a challenge arranging apptmts so as to minimize trips to/from school, fit them into his school schedule with the least disruption and trying to do this thru texts and missed calls!... And then there's keeping S positive about it all as he's just getting tired, frustrated and down about it all. I think I actually do a pretty good job of somehow making it all fit! But, it was just frustrating to find out that routine labwork still need overseeing - I'd thought that, after two years, this was a done deal! :lol:

Now that I know how it works, the control freak in me is admittedly a bit happy :shifty-t: to have the requisition in my control! :lol: Now there will be no question as to when labs are done! And, at S's next GI apptmt, I'll reconfirm frequency. If his GI is happy with every other infusion, I'm fine with that.

:)
 
Tess,
Does Stephen have pain when he takes a breathe in and out?
Caitlyn is having severe pain in her back and chest and feels like she can't breathe. Her chest x ray was normal and we are not sure what is going on. They got us in for an urgent apt with a rheumatologist tomorrow.
 
Kimmidwife - when my older daughter last had costochondritis, she described it like that. The area around her thoracic spine hurt, her ribs hurt and her sternum hurt. I hope the rheumatologist is able to figure out what it is.

Tess - did you ever get an answer on when to do the bone scan?
 
Kim - at times, S had pain when he took a deep breathe but not with regular breathing. It also hurt when he coughed. It was the tightness when he took a deep breathe that prompted S to go to ER. I don't remember him mentioned back pain specifically (maybe a bit?? but if it was there for any extended time, it was mild compared to chest/ribs/shoulder). His pain was primarily along the sternum and travelled to the right, towards his back, along his rib cage. I don't think he was ever able to isolate one particular spot as he said it didn't hurt when touching it. (Although, he did say physiotherapist was able to find a particular area that hurt.)

Maya - I'm waiting to hear back from rheuma office. They see the order for the scan going out but don't see a reply. They will get back to me this week (tomorrow?). They also said it shouldn't matter if the pain is gone right now - scan should still be effective.
 
Tess,
That is exactly where her pain is, the same exact spot sternum, going to the right into her shoulder and scapula. It feels very tight when she takes a breathe and the area hurts during breathing and makes her feel short of breathe.
I took her to the regular doctor. They wanted us to go to the ER but all her vitals were normal and I really felt like it was not necessary. They helped us get an urgent appt for tomorrow at the rheumo. I will keep you posted.
 
kimmidwife said:
Tess,
That is exactly where her pain is, the same exact spot sternum, going to the right into her shoulder and scapula. It feels very tight when she takes a breathe and the area hurts during breathing and makes her feel short of breathe.
I took her to the regular doctor. They wanted us to go to the ER but all her vitals were normal and I really felt like it was not necessary. They helped us get an urgent appt for tomorrow at the rheumo. I will keep you posted.
Click to expand...

A had something very similar over the summer. It started after an asthma flare so I assumed it was related to the lungs. Breathing treatments weren't touching it and she was taking these weird gulp/gasps every few seconds. Said she felt like she just couldn't breathe. Her chest burned, felt heavy, and hurt when touched as well. I took her to the ER and they diagnosed costochondritis. Gave her a shot for pain (which didn't help) and told her to take Motrin consistently to decrease inflammation. 3 days into the Motrin and she had bloody stools so we stopped. GI diagnosed as costochondritis a few weeks later and prescribed Neurontin (which I didn't fill) and PT (which has never worked for her in the past). Immunologist ordered an echo (normal) and then prescribed Omeprazole which worked like magic.

I think costochondritis is often quickly and incorrectly diagnosed. When A did have costochondritis she could pinpoint an actual spot that hurt (lower right ribs) and deep breaths were excruciating. I hope you figure out what's causing the pain for your girl rather quickly.
 
The dx is common because it is a common cause for chest pain .
The treatment of Motrin plus pt also works in the majority of kids who do not have Gi issues
So the doctors have to go with the common dx for the presenting symptoms
So keep in mind Having a kiddo who doesn't follow common rules ( have one of those ) makes things trickier to get a dx since what is typical may or may not apply - reflux is another common cause of chest pain but not the way it was described .

We run into problems when they treat for common but you have to start somewhere
Weird and rare is just that rare and not the first choice for dx regardless
Common needs ruled out first
 
my little penguin said:
The dx is common because it is a common cause for chest pain .
The treatment of Motrin plus pt also works in the majority of kids who do not have Gi issues
So the doctors have to go with the common dx for the presenting symptoms
So keep in mind Having a kiddo who doesn't follow common rules ( have one of those ) makes things trickier to get a dx since what is typical may or may not apply - reflux is another common cause of chest pain but not the way it was described .

We run into problems when they treat for common but you have to start somewhere
Weird and rare is just that rare and not the first choice for dx regardless
Common needs ruled out first
Click to expand...

What I'm getting at is that sometimes doctors are quick to throw out a diagnosis just because it is common. I argued with both the ER doc and our GI that she didn't have costochondritis, and guess what? I was right. Both physicians were adamant that she had costochondritis because she complained of pain with palpation. Both physicians were wrong. Doctors DO NOT have to go with the common diagnosis and treatment, particularly when a child is known to be "a zebra". I'm thankful that our Immunologist ordered an echo to check for immediate danger and then thought out of the box with reflux.
 
Dancemom,
I thought about reflux and gave her nexium for the past few days and it has not helped at all.
Unfortunately MLP is exactly right about the ER. Doctors do look for common things first and that is what is taught in medical school, look for the normal don't look for the zebra unless all the normal things have been ruled out.
ER docs are also taught to try to fix the problem quickly and get the patient out or admit for more extensive work up. Having worked in health care for over 20 years I know how it goes. I do agree though when you have a presenting child who has a known unusual illness already then you need to think outside the box, sadly though it doesn't work that way except on the rare occasion when you get an outside the box thinking doctor in the ER.
 
kimmidwife said:
Dancemom,
I thought about reflux and gave her nexium for the past few days and it has not helped at all.
Unfortunately MLP is exactly right about the ER. Doctors do look for common things first and that is what is taught in medical school, look for the normal don't look for the zebra unless all the normal things have been ruled out.
ER docs are also taught to try to fix the problem quickly and get the patient out or admit for more extensive work up. Having worked in health care for over 20 years I know how it goes. I do agree though when you have a presenting child who has a known unusual illness already then you need to think outside the box, sadly though it doesn't work that way except on the rare occasion when you get an outside the box thinking doctor in the ER.
Click to expand...

It took about 2 weeks on Omeprazole before we noticed a difference with A. Have you given the Nexium enough time to work?

And I know what doctors are taught...."When you hear hoof beats....yadi yadi yadi..." But when you're treating a KNOWN ZEBRA....don't expect her to suddenly turn into a horse. We usually get fabulous ER docs that look at A as a whole person. This one threw a diagnosis at her, gave her some medicine that didn't make an impact on how she felt, and called it a day. I left in tears. That's why I said I hope you figure out your girl's problems quickly. It took us weeks.
 
Suggest what we do if your kiddo doesn't fit the mold
Talk to the specialist first then only go to the ER where they have prviledges
Let them know ahead of time that your coming
And keep the main specialist at the top of the call list ( in her case immuno)

In education I assume it no different you assume the kid has normal learning issues first
Then move on from there and test accordingly
You don't do the rare expensive tests on every kid
 
my little penguin said:
Suggest what we do if your kiddo doesn't fit the mold
Talk to the specialist first then only go to the ER where they have prviledges
Let them know ahead of time that your coming
And keep the main specialist at the top of the call list ( in her case immuno)

In education I assume it no different you assume the kid has normal learning issues first
Then move on from there and test accordingly
You don't do the rare expensive tests on every kid
Click to expand...

We initially thought it was a lung issue so we went to the hospital where her Pulmo is. She is the one that advised us to go. I never just take her to the ER without calling in advance.

In education if the kid has a known learning disability (like A has a known immune deficiency) I ALWAYS think out of the box.
 
Result from bone scan is that all is fine.... we are to call back if pain returns (intensifies).

Of course, immediately following rheama apptmt, his chest/ribs began to feel better anyway. I swear, this always happens so I appear neurotic here and to GI! :ybatty: But, in any case, scan is clear and he is feeling better. I just reminded him this week to continue with physio if he's feeling even just a twinge of pain (he didn't reply! :lol: The joys of having kids away at school!)

I'm still convinced his shoulder is a separate issue - for that, we'll either wait until the October :ywow: apptmt or, I've asked S to ask his p/t for a recommendation of another local ortho (in S's hands...).

For now, I'll just see how it goes... ;)
 
Glad he's feeling better and that the scan was clear! Of course, pain ALWAYS gets better the moment you see a doctor ;).

Hope you can get in with an ortho sooner than October. Can't believe the wait is so long!!
 
It is driving me nuts! Sure, S is fine now, happy, getting on with his life but, when it comes back, it'll be all 'why am I suffering with this?', 'I'm 21 and my body is breaking down', 'my friends can't understand why I'm never well', 'do you know how depressing it is watching roommates leave to go play hockey and I can't go?'... ugh, I get it! (Especially now as I fell, badly bruised my ribs and now know how he feels!)

But, I'm thinking if the chest/ribs pain does come back, it's going to be tough to get a definite dx. I kinda thought this is what would happen... certainly glad his heart was cleared and scans came back good but I think a musculoskeletal issue will be harder to pinpoint. So, these were the 'easy' steps! :yfaint: Other constant hurdles are him and the distance. When he was younger, I could control - 'yes, you do STILL need to see physio!' and distance not an issue. As I said, I'd bet LOTS that he hasn't gone to physio since he's gone back to school ('it feels fine', 'just can't right now with all my classes', etc.) so I just can't control what I think should be the ongoing treatment. :(

And, all this applies to his shoulder too!

As for ortho, I think part of the problem is that I picked an ortho that seemed to have an amazing clinic (physio, chiro, sports med, ortho specializing in shoulders, etc.) but, being an amazing clinic clearly equals lots of patients. :( Other than pulling a name out of the yellow pages (yes, old timers' equivalent to google! :lol:), all we can do is ask his p/t for a recommendation of another good ortho... again, in S's hands - up to him to go to p/t and then remember to ask. :ybatty: Being someone who wants control over this stuff, can be frustrating when it needs to be left in the hands of a 21 year old! :ywow: Even at 21, it's not easy to just let them take it all on by themselves :( and I feel bad for him; I know he's responsible re his shakes and supplements and he has gone to physio, yoga, etc. and I wish he didn't have to deal with more apptmts, etc.

My head's going back in the sand - it was musculoskeletal, took a long time to heal and now it's really better. ;)

(MLP - don't worry, you still have a few years to go before DS grows up! ;) )
 
Last edited:
Honestly, Tess, for AS and JSpA (I guess S would not be considered JSpA anymore - he's grown up now :eek:!) a bone scan isn't the most accurate test. So it is possible that they missed something (though chest pain without lower back or neck pain in AS would be very rare, I think).

I think you'll have to wait and see but he should DEFINITELY do PT. If it's an injury, PT will help with strengthening the muscles so it doesn't happen again.

My older daughter is the same as S - it's so hard when you have young adults. She complains but isn't willing to do anything about it.

And when she feels fine, she conveniently stops PT. It's very frustrating! She's finally figuring out that she actually needs PT to feel good and keep her back flexible but it's been quite a process. And she only has to go twice a month - I have trouble understanding why this is so hard for her :lol:. She is 22 and we're finally making so progress, so hang in there!

Can you call his physical therapist and ask for a recommendation? You could call the place he's going to and then just ask for the PT S is seeing. Keep the appt. at the amazing ortho place, but try to get one sooner somewhere else.

Hang in there! Eventually he'll figure out what he needs to do to feel better. It's just hard watching them struggle until they figure it out :ghug:.
 
I guess we were just as stubborn way back when... ;)

I have thought about just calling the p/t myself but, at 21, it sort of seems wrong that his 'mom' is calling with such a simple question! :lol: I think this job I need to leave in his hands! I've booked the Oct apptmt, so my 'back-up' plan is in place ;)... It would be better if he was able to see an ortho sooner but, like you said, he has to figure it out (as much as it pains me along the way! :lol:).
 
:lol: I tell my daughter - either you call by x date, or you deal with me calling. Most of the time, she calls quickly :lol:.

I'm sure we were angels when we were their age ;)!
 
Haha Maya! And we have girls so we could just say "I need to make an appointment" and no one has to know mommy did the calling. :eek:
 
Totally feel the pain of having an older child not exactly execute treatment plans or follow up like they should...,mine is only in high school and tonight again we discussed need for him to be mature and take some responsibility for his health. I guess when we were young we thought we were bullet proof too but this is crazy!!!

Funny what a difference in compliance you see between maybe age 13-15 and up. What will college and young adulthood bring????😩
 
So, back to square 1... S dislocated shoulder Saturday, back to ER, had to be put under to pop shoulder back in. :(

But, am looking at silverlining... hospital said they are referring him orthopedist. This will be close to his school (which is what I wanted) so, hopefully, we can move on this a bit more urgently now.

But, poor guy is in a lot of pain and not much he can do for it. Icing it, wearing a sling and taking tylenol. I don't know what else to suggest to him for now... :( Would feel better if he was at home. :(
 
Tess,
That is awful to hear! I hope the ortho can figure out a way to help quickly! Can they prescribe something a little stronger then Tylenol for him? In the USA they probably would.
 
Kim - not sure about pain meds. I wasn't with S when he went to hospital and I know, in the past, when he's been on his own, he's just told staff no pain meds at all because he didn't want to take something he shouldn't. They may have offered and he declined them?? At this point, it's not worth trying to get anything else... his GP is near home, S is two hours away and a local walk-in probably wouldn't easily prescribe something stronger. As his ortho apptmt is after tomorrow, I don't think there's much point is doing anything else until then.
 
Glad the ortho is so soon! Is it that once you dislocate something it is more apt to happen? Because teen/young adults seem to be wrecking balls as far as strenuous activity, rough housing, sports, crazy just for the hell of it stunts so how do you keep it from becoming an ongoing issue?

Hope the pain passes soon.
 
Oh no! Hope that he starts feeling better soon, and that the appt Weds. is helpful.
 
Clash - yes, once it happens, often it becomes a recurring problem. Especially, if you keep injuring it. It goes round and round, it's now vulnerable so you hurt it easily, now you've hurt it again, becomes more vulnerable, etc., etc. Once you pop the shoulder out, the ligaments/tendons that hold it in place, are stretched and sometimes don't give the same stability as they once did. I imagine, each time this happens, the stability weakens.

Likely there's much more to it, ie how long it's 'out', degree of dislocation?, location/position of dislocation?? This is, at least, the second time it's completely popped out requiring ER to sedate him so it can be put back in place. But, he's felt it pop out and back in a few times on it's own.

He's barely played hockey this year because even a hard slapshot or an awkward fall causes it to pop out and in; a few weeks ago, as he passed a friend, the friend pulled his arm to call him back - not hard, just a normal tug but pulled from behind... it was enough to be one of the out-in pops.

I know surgery is an option but, from what I've read, surgery isn't the 'fix-all' - it may prevent further dislocations but I don't think you're left 'good as new' as far as flexibility, etc., kwim?

Hopefully, we'll get some guidance from ortho on wednesday.
 
Poor S! I'm surprised they didn't give him something like Tramadol. I know NSAIDs are out, but I'd expect them to at least give him something for pain!

Glad he sees the orthopedist soon. Hope you guys get some answers!
 
Tess,My friends son had this problem with his shoulder too. He had the surgery and has done great since then. No more issues at all.
 
Sorry about his injury. Hope a plan comes together at ortho. And he is very mature to think about what meds he should and should not take!

Be nice to him. I dislocated my shoulder twice. I thought the pain was worse than childbirth (which was horrid!)
 
Kim - really good to hear! And your friend's son has had no loss of flexibility or range of motion?

Thanks Optimistic :) I'll definitely take care of him. Took advantage of the trip to see him to go pick up groceries for him last night... unfortunately, no time to make him some home food though.

I found some info on his ortho and I'm hopeful it'll be a great fit!! He's young, sports minded (played on university teams and competed on one of Canada's national sports teams), won an award for his interpersonal skills with patients and families... so, I'm hoping he'll understand that Stephen's hope is not to just have a stable shoulder but, ultimately, to reach a point where he can play hockey again. I'm so happy we're finally moving beyond x-rays that show no problems.

:)
 
Oh no, it sounds so painful! I'm glad his appointment is soon, and he is so brave to handle it without pain meds, some of which really mess with intestinal motility!! I hope he is offered good options so that he can continue to play hockey without having to worry too much!!!
 
Funny how you described the ortho.

I do some work in pharma and I've heard ortho surgeons described as ex-jocks who don't realize they aren't in that stage of life anymore! They often relate to a patient wanting to return to the sport and ASAP. The joke is they release their patients much earlier than any other surgeon. Push him To look at all Options to get him back on ice asap.

I saw that personally recently when my son had knee surgery. He was very concerned about getting back to sport for a tournament. Instead of dr telling him that may not be possible, he looked at calendar and backed into a surgery date that would most likely enable him to play. This was the same man we waited forever to see and whose asst said he schedules surgery 8-10 weeks out. I guess he finds space for surgery when there is a game you need to make!

Now if the gi would only work this way in scheduling scopes and mre. Those take forever and other life events that may conflict aren't factored in!
 
Tess,
My friends son did really well. To well almost, six months after his shoulder surgery he had a mountain climbing accident and is still recovering from that a year and half later. (Had nothing to do with the shoulder).
 
Funny!! Over the years, i was quite surprised at the exceptions made when it came to hockey (I'm sure all sports!), even from school! When S hurt his knee years, years ago, playing soccer (his 'off season' activity), my husband (ok, me too) moved heaven and earth to get him ready for hockey season! We even went to the states for a quick MRI so he could start treatment sooner! And, this was grade 8 hockey!! No NHL scouts on the horizon! :lol: But, in Canada, hockey seems to take priority over anything! :ybatty:

Was just about to post about today's apptmt...

So, it was 'okay'. Ortho recommends surgery, seemed to be his one and only recommendation actually. He said his shoulder will never heal without it and, the way he described it, makes sense that no amount of physio will help.

If anyone has any experience with this, I'd love your opinion too. My terminology/description will probably be a bit wrong but here goes... He explained that the ball (top of arm) fits into the shoulder socket and, between the two, there is some cartilage attached to the socket (imagine the cartilage glued to the socket). When he dislocated his shoulder, the cartilage 'glue' tore away from the socket and is now loose. The surgery will reattach the cartilage to the socket at three points (sutures or clips). It will be an arthroscopic surgery - three small incisions.

Given the way he described it, I can see how no amount of p/t will reattach the cartilage. :( And, because the cartilage is loose, this is why S often feels it pop a bit out and back in (and, why he typically feels like it's always a bit loose).

He said there's no medical urgency in getting it done immediately, other than further dislocations/injuries will make it looser (up to S to be a bit more careful and no hockey, weights, etc.).

We need to get an MRI, which will take a couple of months anyway because it needs to be done with dye, so can only be done with certain technicians, small hospital, etc.

As far as remi, he did want GIs confirmation but said risk of infection is low with arthroscopic surgery. Other risks are low - nerve damage (but he said very rarely), loss of range of motion will barely be noticeable (said it wouldn't affect sports, etc.), does not guarantee no future dislocations (but usually only with sports like rugby, football, etc.). Recovery is a bit of a bummer - six weeks in a sling and then another six weeks recovery.

S can't do his summer job with a sling so we're thinking the best timing will be beginning of August. Will only lose one month of his summer job and, will only have sling for a week or two of school (more easily managed than his job). S's greatest frustration is that he'll have to wait so long before he can get back to sports, working out, etc. Annoying but not intolerable.

So, questions that I thought of AFTER we left!

Dr was soooo enthusiastic about the surgery it made me nervous! :eek: But, I have to admit, I felt the same way when S's ped GI pushed EEN over steroids - I knew nothing about either and sometimes felt I'd been railroaded into that decision BUT, I know now, having the opportunity to do either, it was the better first choice to try. So, Dr's enthusiasm isn't necessarily bad.

If another dislocation happens post surgery, what does this mean to the cartilage? Right now, it is loose but in one piece. If he dislocates it later, will it tear apart at the three points where it's secured by the surgery? Will this be even harder to repair? (Knowing S... gotta ask the question! :lol:)

Should I get a second opinion? Husband doesn't really think we need a second opinion, I know he's thinking I can't second guess every doctor! But...??? (And, we do have time if we're waiting until August anyway...)

As far as remi, S's next GI follow-up is beginning of March, so I will ask his opinion then.

Oh, and one more tidbit of info that I found interesting... S has almost no pain in his shoulder today and almost his usual range of motion (altho it's usually a bit limited because of recurring problems), Dr. said this is actually 'bad' news. It means that the area is already stretched and why, even though he had a complete dislocation three days ago, the new damage wasn't 'severe' because it's already damaged. :(

But, S's chest/rib pain is back! Started this morning (has to be connected, right??). Said it's much, much worse than his shoulder. :ywow: Told student ortho and real ortho, explained about cardiac tests, rheumy, possible connection to shoulder... both their answers, 'hmmm sounds to be a medical mystery'. That was it! :ymad: Student even said 'yeah, you don't want to be a medical mystery.' :yfaint:
 

Similar threads

C
Your thoughts, please. 10 yr old.
Replies
12
Views
748
wenkren21
W
K
Remicade trough level
Replies
7
Views
1K
Maya142
Maya142
S
Professional tennis player ranked 84 in the world with Crohn's. How Muller Has Overcome Crohn's Disease To Face Djokovic At US Open
Replies
2
Views
1K
Jo-mom
Jo-mom
C
14 year with some lingering issues and unanswered questions
Replies
6
Views
2K
crohnsinct
C
J
5yo Son Diagnosed 1/20/21
2 3 4 5
Replies
460
Views
46K
my little penguin
my little penguin

Latest posts

Back
Top