Further tests for RA :(

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Tesscorm

Tesscorm

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So, RA has not been ruled out... but not confirmed either!

GP hasn't yet received blood results from the lab but said the walk-in doctor had requested RF and another test (forgot what??) for anklosing spondylitis (Emily had told her that her brother has Crohns).

X-rays showed calcification around the joint and, I "think", she said possible calcinosis cutis (she said something like this and I've since googled so I may have read this term and not actually 'heard' it...). She ran more blood tests for HbA1C, TSH, Creatine, ALT and ANA (some are thyroid related because Emily's complaining that she's not losing weight even with her healthy diet and tons of exercise... Emily's weight is fine, I think the GP just running this test on the off-chance there is an issue...)

She said RA would explain why Emily has been low in iron for over year, even with supplements, change of supplements, increase in supplements, etc. She was actually due for another test now to see if the latest 'increase' had affected her HGB level.

She did say that the calcification could also just be due to past injuries, etc. given Emily's activities... I hope so!

So now we wait... once she receives the blood test results, she'll refer Emily to a Rheumi (unless the tests rule out RA).


** Just looked up these tests and most aren't not making any sense to me??? I was rushing so, perhaps, I wrote them down wrong??? Or maybe I just don't understand the relevance???
 
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Tess,
I don't understand why she would want a HGBA1C? That is a test for diabetes. Maybe you wrote that down wrong. The others pretty much make sense. Although a TSH by itself does not give an accurate picture of the thyroid. She should order a FreeT4 and possibly thyroid antibodies. did she do any more X-rays to see if there is signs of calcification in other places? Don't panic yet that calcification couldd certainly be from a past injury. I am keeping my fingers crossed for you guys.
 
Hi Kim,

I agree, I must have written down something wrong... the lab technician was calling in patients and I quickly wrote the codes beside the 'checkmarks' but maybe I looked on the wrong line??? Because, yes, as you said, when I looked up the tests, it didn't make sense??? Unless there's some connection between diabetes and calcifications???

She didn't do more x-rays - there were x-rays of her hand/pinky and wrist. Given Stephen's crohns, her plan is to refer Emily right away to a rheumi if these tests don't rule out RA. I imagine she expects the rheumi will send for more x-rays, if necessary.

The thyroid test, I really think she ordered more to 'humour' Emily than from any real concern. Emily had asked about some miraculous diet supplements (LOL) and her GP told they don't work - diet and exercise do. But, Emily is already very conscious about her diet and could not possibly exercise more! She's in great shape - this is more an 18 year old girl mentality asking to lose more weight. She is already in the BMI range for 'athlete' but, if she tries, OMG, she can pinch a centimetre around her waist! :ybatty: But, her (and my) GP is super - she's never hesitated to run tests! She's been my GP for 30 years and I just transferred Emily to her care in August bcz her office is close to my work and Em's university now.

Yeah, I'm still hoping for the 'past injury' result!! :thumright:

Thanks!
 
Tess,
ALso tell your daughter if she is in good shape she does not need to lose weight and it would not be healthy for her! Tell her about the risks of weighing to little. I always worry about girls and anorexia because I had a good friend who had it and has never been the same her entire life.
 
Thanks Kim,

I do 'watch' that she eats. From what I see, she eats almost every 2-3 hours or she doesn't feel 'well' (cranky, etc.), but mostly fairly weight conscious foods, i.e. an egg for breakfast with melba toast, tuna sandwich but only on a small, whole wheat wrap, fruit or salad for snacks, roast beef with veggies but no bread, no butter, etc.... but, I do watch for signs in case she becomes frustrated that her diet plus exercise don't do the 'job' and starts to cut back even more. She followed the Weight Watchers plan for a while but felt it didn't give her enough food - was glad that she recognized that in herself. But, she knows I wouldn't be happy if she cut back more and it certainly wouldn't be unheard of for a teenage girl to 'hide' things from her parents!

I understand what you're saying... I worked with a woman once who was also anorexic when younger and remember her saying that she had to force herself to eat sometimes and had to consciously make the effort to not let herself get worried if she gained two or three pounds.
 
Hi Tess,

It must be so hard waiting and wondering, expecially since you do't have a definite answer and they need more info. I hope you are hanging in there and looking after yourself too. I hope you can get some answers soon. Is your daughter anxious about it all? It sounds like you have a wonderful and supportiver GP, I have a GP like that - and it makes a world of differnece.

Thinking of you, and hopefully it will all be nothing.

best wishes,
LilyRose
 
Hi LilyRose,

It is a big help when you trust your GP!! I've been unhappy with Stephen's GP for a while now (which is why I moved my daughter) but, I'm just waiting to see where he decides to go to school next year before I find another GP for him... if he also goes to school in the city, I'll move him to my GP but, otherwise, just wouldn't make sense to have a GP in the city if he's never nearby.

For whatever reason, mom instincts??, I am expecting that it will be RA (but am still hoping, hoping, hoping, it's not!!). Hopefully, it won't be too long to wait... you're right, the 'waiting' is always so hard! :frown:
 
Ahhhhh Tess...:hug:

We are waiting with you hun. I too hope more than anything that it turns out to be past injuries. I hope your radar is off target!

Sending loads of love, luck and wishes...:goodluck:

Thinking of you, always, :heart:
Dusty. xxxxxxxx
 
Thanks Dusty... Yeah, as off the radar as that Italian captain I hope!!

I sure hope it is past injuries...
 
Tess,
I am praying it is past injuries for you! I know how hard this is. When will you hear results of the blood work?
 
I didn't even ask... I think part of me just doesn't want to know. :mad2: But, I think it usually takes 3-5 business days to get results, so I'm assuming beginning of next week.

But, her finger finally seems to be settling down... even up until last night, she was complaining that it was hurting but just checked it now and it does seem to be a bit better - she can straighten it and barely swollen.

Thanks again Kim!! I really appreciate your thoughts! :rosette1:
 
How is it going? How is the finger and any blood test results. Hopefully you are all going OK.
take care,
LilyRose
 
Hi LilyRose,

Thanks for asking! Spoke with Dr's office yesteday and they had just received results. As much as I just want to know the results, between my schedule and my daughter's school schedule, I don't think I'll be able to arrange an appointment until next week (also have my son's GI apptmt tomorrow!) (Honestly, I need a job where I can just show up when convenient! :lol:).

Thanks again for asking about her!! :)
 
Just spoke with GP's secretary... she has booked an appointment for Emily with a Rheumi for end of March. Said she doesn't 'need' to see Emily for this issue as we should follow up with Rheumi but she can meet with us if Emily or I want to discuss the results. I guess it's not really necessary. I'll just get a copy and discuss them with the specialist.

Feeling really angry and defeated. I knew that this was going to be the outcome of the tests but was still hoping that it wouldn't be. It just feels sort of surreal. How is it that both my kids ended up with lifelong illnesses that are 'manageable' but will always impact their lives?

Guess we'll just trudge along, one day at a time.
 
Tess,
So I am guessing by saying she has booked her an appt with the rheum she is saying the tests were positive even though she has not given you the actual results? I am so sorry. Sometimes these tests can have false positives so don't give up yet. I am still keeping my fingers crossed that she is one of those with false positives. I am sorry you guys are join through this. Having 3 kids with issues myself I know what it is like. ( Caitlyn with crohns, Her sister has neurofibromatosis Type 1 and her brother has aspergers). Life is not easy that is for sure!
 
Hi Kim,

Thanks, I know you understand! How did we all get on this ride? It really sucks! And, I know there is much, much worse out there but, still, I look at people who's kids are 'healthy' and think it's so unfair. Not wishing them ill !!, I'm wishing mine (ours) well!

Now that I've had a couple of hours to actually sort of come to terms with it, I've called the dr back and set up an appointment for next week. I do want to get the results and ask how Emily should treat any pain (although her finger is much better now). I'm concerned about her taking ibuprofen as I have always suspected that Stephen's use of them over the winter, before his diagnosis his May, may have triggered his first flare. And, is there any reason to think she should see a GI??? She has no GI symptoms but now I'm worried if this is something else to be concerned about.

Sigh... I am going to mention it to Stephen's GI tomorrow and get his thoughts as well...
 
Hey Tess...:hug:

I'm so, so sorry to hear this hun. I know you know I have had the same feelings of hope only to have reality hit me like a bus. :(

I think you are right to mention it to the GI. God I hate saying it but it concerns me that very often extra intestinal manifestations appear well before the GI ones do, we just don't realise it at the time.

Always in my thoughts Tess and now more than ever, :heart:
Dusty. xxxxxxxx
 
Thanks Dusty, more than ever, I can imagine how difficult Matt's diagnosis must have been. You comes to terms with one but hope that's where your heartbreak ends and then, you get hit again! Oh well, like I said in other post, we're parents, one way or another, we find a way to deal with it.

Yes, re the EIMs is why I'm worrying now... although, other than aches that I attributed to her sports (I guess now, RA) and a rash, she really has no other symptoms. Last year (or maybe two years ago???) she had a rash all over, started on her belly, then around her ears and face, arms and chest. We went to two dermatologists and came to a so-so conclusion that it may have been a reaction to nickel. It was left with just the 'so-so' conclusion because months had passed and the rash was passing as well. It could certainly have been this, as she had a sensitivity to nickel when she was a baby and the rash started because she'd been wearing a belt with an 'old' buckle, which had cut into her skin but she kept wearing the belt because it 'looked good'! :) But now, I just don't know???

It's too bad I can't get Stephen's GI to have a look at her but, as it's a children's hospital, she's beyond their maximum age.

Guess we'll just see what tomorrow brings... Stephen was complaining this morning about some pain, ugghh!, hopefully it was just his 'eating habits' - came home at 9pm and made a steak and potatos and then started his EN at 11:30! His poor tummy didn't get a break! :)
 
Oh Tess - I imagine you will be feeling sick in your stomach. I really doesn't seem fair somtimes - no kids deserve a chronic condition however manageable. It isn't fair that Emily has to deal with this - whether it is RA or part of Crohn's. I think you should allow yourself to feel REALLY upset and distressed for her. I think being hit by a bus is a good way of decribing it.

One thing I believe is the fear of the unknown is particularly scary. So I agree it would be good to talk the results over with your GP, particularly since your Rheum appt isn't for about 8 weeks by the sound of it. You could then discuss the possibility of a GI appt. And a plan for the time being.

Take good care of yourself right now.

Thinking of you, and I hope Stephen's stomach pain has settled this morning.
LilyRose
 
I would bring her to Stephen's G.I. appointment and see if he has a second to look at the rash. It would take him 2 seconds if you bring her with and he can give you an impression. It might ease your mind and RA can be a tricky diagnosis. Nice to have another set of eyes take a look. Good luck. My son is having joint pain too and we are worried about RA. I hope all goes well. ((((hugs)))))
 
Tesscorm,
I am sorry to hear that you are going through this added challenge with your daughter's health.
I am sending many of these::hug:
 
Thanks Happy, I appreciate your thoughts and support!

LilyRose - You're right in that the fear of the unknown is often more scary. I think I felt worse last week when everything was 'unknown'. There was that kind of 'numbing' moment when the secretary said that she'd booked a rheum. apptmnt, because that just confirmed my fears but, as the afternoon went on, I guess those 'mom' instincts took over and just started planning on how to deal with it. :(

Johnny's Mom - the rash is gone now, whatever the cause of it was, so there wouldn't be anything that the GI could see. I will ask if they will see her though; they transfer kids out at 18 but, as she doesn't turn 19 until May, and she's a sibling of a patient, maybe they'll consider it??? And, :lol: being a teenage girl - I can just imagine her response if I told her she had to come to Stephen's apptment tomorrow - she'd be rolling her eyes and saying "oh my gawwwwd, mom! you're soooo over the top!" :ybatty:

Don't have too much hope for it but I guess there's still the possibility that it's not RA, could be another type of arthritis (which I guess might be a preferable diagnosis). Don't have any experience with arthritis so I'm not sure how they determine different types of arthritis (other than, I believe, a high rheumatoid factor result can indicate RA - will ask about this next week).

Thanks again everyone for your support and concern.:ghug: I'm so grateful I don't have to go through this diagnosis without any help!
 
Tesscom - you have plenty to think about, I know. Feel free to email me after your rheumy appt. Claire was diagnosed with JRA (RF+, ANA+, polyarticular) at age 3. Crohns not until 6. However they have now decided that all her JRA issues were extraintestinal manifestations of her Crohns disease.

Big hug- you aren't alone -

J.
 
Sending loads of love, luck and healing thoughts your way for today Tess...

HugGroupAnimated.gif


Dusty. :heart:
 
Good luck today Tess! Hopefully, Stephen's pain has settled and he'll get a thumbs up! I hope the GI has some insight for you about Emily. Let us know!
 
Thanks Dusty, Dex. :)

Julie, thanks for the offer - I'm sure I'll have tons of questions! I think I'm going to stop googling! :ybatty: The more I google, the more questions I have and the concerns keep growing! :( Going to try to just sit tight until I actually speak to the doctors!

Last night, Stephen said the pain was gone. :) Hopefully, it was a case of just too much food, too late at night on Monday evening! Also, he has had tons of assignments due and exams coming up - could also be that he's been a bit more stressed than usual. Guess we'll know more today.

Thanks again everyone! :ghug:
 
Yes sometimes the university of google is not my friend either. :). Hang in there dear.

J.
 
Hang in there Tess we are all there with you! PS. I agree with everyone else that you should talk with the GI and try to convince her to come along to Stephen's appt.
 
Stephen's update...

So, we talked about a few things:

Blood results from Christmas - as his levels were up a bit, he ran another set of tests. He said it is possible that they were up due to his cold and knee injury. Stephen told him he periodically has one or two days when he feels 'off'. Not pain but he can tell something just isn't normal. He doesn't reach the point of diarrhea but his stools are softer while he's feeling off. And the feeling goes away after 1-3 days. GI said that, frustratingly, Crohns is like that. It's hard to isolate what causes a day or so of unusual symptoms. Not to be ignored but, perhaps, nothing to really worry about.

Once he has yesterday's blood results back, we'll decide what to do. If they are still up, he may ask Stephen to repeat the 6-week EN treatment and commence on methotrexate. He will also schedule another MRE around May (to follow up his last MRE in October).

5-ASAs - he said he doesn't have a lot of faith in these to maintain remission and he doesn't often prescribe them.

LDN - same as a lot of other comments here - not enough trials, certainty, etc. Believes that much of it is hype and coincidental results, i.e., Stephen can feel 'off' for a day or two, if he happened to start LDN on those days, and then felt better, Stephen might believe that it was due to LDN. Meanwhile, it may have been due to 'something' else. He is aware that there was one patient at the clinic who had tried LDN and it didn't work. Said he attended a conference/presentation where, I believe, Dr. Smith presented her findings and said he felt there were 'holes' in her data and trial was too small.

I didn't continue the conversations on either the 5-ASA or the LDN as we don't know Stephen's results yet anyway.

Re Emily (she didn't come to apptmt) - he said only to be sure that her rheum is aware that Stephen has crohns. Doesn't necessarily mean she does but that her rheumatologist should definitely be aware. Unfortunately, they cannot see her. As it is, Stephen needs to start considering where he would like to be transferred sometime this year.

So, I guess we'll leave all as it is for now... If his results are higher, I think I will ask that he consider the 5-ASA plus LDN. (Please let me know your thoughts!!! I'd really appreciate it if you tell me if it makes sense or not!)

Stephen will redo the six-week EN but I would like his maintenance to be the 5ASA and LDN. My reasoning is that the GI was aware that EN had a lower success rate at maintaining remission than do other meds but he was willing to try it as there were fewer side effects. If this is the case, why can we not induce remission again with EN but this time try to maintain remission with 5-ASA and LDN. If it doesn't work, are we any worse off?

Tess
 
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Tess,
That is a difficult choice. I know when Johnny was first diagnosed I wanted his maintenance med to be 5 ASA but our G.I. said it was like treating a brain tumor with aspirin. I don't quite get that because it seems to me if someone has mild crohn's an anti inflammatory would keep things under control. He said G.I. doctors for years tried this method first and learned the hard way it wasn't good for long term remission. I hear what he is saying about LDN too. There just is not enough info to know for sure if it works or not. I guess my question for your G.I. would be what risks are you taking if you give it a try and it is not effective? How soon would you know? Is his concern that things would get out of control then it would be harder to get into remission with other meds? We are trying to come up with a plan for Johnny if 6mp doesn't work because we are not ready to jump into biologics so LDN is something we are going to talk about at our next appointment. I am not sure what we risk by giving it a try, because it seems there is a lot to gain if it works! Please let me know what you find out. :)

Tiffany
 
Hey Tess,

I have only been able to find the one clinical trial involving LDN and it would be the one that Dr Smith was involved with. The trial did involve some people that were on other drugs for their Crohn's but I don't know what except to say it wasn't a biologic.

My questions would be the same as Tiffany's and how are they going monitor the effectiveness of the treatment if you go the path of LDN. Of course it goes without saying, as it does with all treatments, that you have to go in with your eyes open and accept the evidence that is in front of you whether it be via tests and/or just the look and symptoms of the child in front of you.

Is stephen having any baseline tests done, aside from blood, before bumping up treatment again?

You probably already know this Tess...EN tends to become less effective at inducing remission after its initial use. That's not to say it won't work again this time just that the chances are reduced.

I know I am stating the obvious by saying that if it doesn't work then you have uncontrolled inflammation festering away but that is true of any failed treatment and I know you are using it in the context of perhaps using milder drugs. As much as I hate to see kids go through tests I still don't think it would be a bad idea to know what is going on with his gut before making any decisions but I may be skewed on this due to my own experiences. I have never had time on my side so I am probably not the best person to be asking! :lol:

Good luck hun with whatever you decide, it's no easy choice and the being constantly between the devil and the deep blue sea sure takes its toll...:hug:

Always in my thoughts, :heart:
Dusty. xxxxxxx
 
Didn't have a chance to come on yesterday - usually sneak in the time while I'm at work but have been spending so much time here reading and other related reading that my work was seriously beginning to fall behind!! :eek2: Absolutely had to spend time on it yesterday! :lol:

Dusty - what other baseline tests are you thinking? Other than his bloodwork and an MRE in May/June, he didn't mention any other tests. Are you thinking a colonoscopy? Or ultrasound, MRE, etc.

I know I can't get an MRE here quickly but am willing to check if it's possible (and, financially, feasible) to get one done in the US. We're not far from the border and I know Canadians often head down to the US for tests such as MRIs.

As far as monitoring - all we discussed was the monitoring of the methotrexate. I believe he said weekly (or monthly?? TMI to remember) blood tests at the beginning and, if all is well, gradually moving to once every three months.

My husband wants to get a second opinion before we commence on any treatment (other than EN).

And, I think I hear you Dusty re keeping your eyes open... I am worried that if we try the LDN, I will have to be diligent in not 'ignoring' signals I don't want to see. :( I know I'll want it to work so much, that if it doesn't, it'll be a bit tough to accept 'failure'. Trying to do that now with the EN! A little part of me would like to say, let's just start all over and give the EN another try (with no meds!) but... don't think that's being realistic. :(

And, Tiffany - I'll certainly post any discussions/updates we have regarding LDN.
 
Tesscorm,
I hear you loud and clear re: not wanting the heavy-duty drugs with possible side effects and I hear Dusty's warnings about what the disease is doing 'silently' that we might not 'see'. What about doing full EN with one of the meds, then when the docs agree that he is in remission, stop the meds and continue with partial EN as the treatment (or even trying the full elimination diet while on partial EN while in remission)? Of course you would want to research what tests you would use as markers for treatment success and get the docs on board with this. As well, you would want to research which meds could be safely started and stopped and still remain an option down the road.

I understand about wanting access to tests in a hurry, but there are potential problems with going out-of-country for the tests. I have had some private testing for another health problem (which showed definite red-flag problems). Because the tests were outside the system, there were difficulties with access to them inside the system--different electronic record systems, questions of liability if the tests were done incorrectly or read incorrectly and the physician inside the health system was treating based on the tests outside the system, and refusal to communicate with the docs working outside the system. (They didn't want to load the tests onto the hospital system and they didn't want the interpretation from the outside radiologist, but refused to have their radiologist re-interperet the results!) It isn't necessarily as straight-forward, fast and helpful as we might like to think. Because your son has already been diagnosed and will need frequent follow-up, I recommend that you try to work inside the system as best you can, while advocating in the wonderful way that you do.

Tesscorm, this is an incredibly difficult time for you. Remember that you did not cause your son's health problems and although I'm sure as his mom you want to 'cure' his disease, it is not up to you to do this. Each of us has to deal with the health challenges in our life in the best way that we can that makes sense for us. But don't forget that there is no perfect solution for you and your son--only treatments that will help in some ways that you might need to try one at a time to optimize his potential for long-term good health.

Sending many of these::hug:
 
Hi Tess,

Yes, I was thinking of a colonoscopy and if there is obvious small bowel disease an enterogram, either CT or MRI. Since Stephen has continued to have a couple of "niggly" issues I think at this point it would be worth finding out exactly where he is at before moving on. I know the decisions are never easy but perhaps with that sort of evidence in front of you it may make the waters a little less muddy. If the scope shows that his gut is relatively healthy then you may be more at ease with going with the milder approach and the outcomes should it fail. On the other hand, if things aren't so well then it may make it clearer as to what approach needs to be taken.
I know for me, being able to visualise, both literally and figuratively, what is happening has given me a greater understanding of where we at that point in time and made the decisions, although bloody hard and unpleasant, easier to come by.

Tess, your hearing is perfect. :wink:

In my thoughts, :heart:
Dusty. xxxxxxxx
 
Hi Happy,

His treatment has been 'partial' EN since July. When he was diagnosed, he did six weeks exclusive EN and, then over 3+ weeks, gradually added back all foods. He has continued with EN, 5 nights per week at 1/2 dose. This has been his only treatment.

Depending on his results, his GI is proposing that he does another 6 week exclusive period to reinduce remission and then begin methotrexate. I don't think the EN would be continued together with the methotrexate.

I don't think a full elimination diet approach would work for him because he has so few symptoms. The only foods he has eliminated have been seeds, nuts and almost all veggie/fruit skins. He has eaten everything else and has never had an episode where something didn't sit well (oh, except one breakfast sandwich with cheese and sausage and a large choc milk, rushed in between connecting flights! :lol: I think that could make me sick!). So, how would I eliminate or reintroduce foods if I never have an indication that something isn't sitting well with him?

And, yes, I totally understand your comments re out-of-country tests. A friends' wife ran into the same issues when she was diagnosed with cancer. They went to the US for tests but, as you said, there were all sorts of issues with the doctors here accepting the tests. If I went this route, I was going to speak to the GI and get his thoughts on it.

If we were to go the route of using EN and then 5-ASAs plus LDN, I would want his GI to be on board fully, even if somewhat reluctantly. I don't want to go 'behind' the doctor's back, I certainly don't want to singlehandedly take on Stephen's care. Which is why I'd certainly be willing to take him (and pay) for out of country tests but I can't be the person who makes the decisions on these tests! The GI would have to be willing to accept them.

My husband wants to see another GI... which is fine, it can be an 'intervew' of sorts of where/whom we transfer Stephen's care to sometime this year. :) And, I know I'll feel a bit better having had a second opinion.

Thanks Happy - I appreciate your comments! It's hard enough letting go of your babies when they are well, much tougher when they're not! :(
 
(Darn, this work... keeps interfering with my life! :eek: Have to keep jumping on and off!)

Thanks Dusty - great advice! I will ask about a colonoscopy or push for the MRI to be sooner than the May/June. Unfortunately, there really is a problem in the delays in getting them here!!! No matter how much I push, I'm not sure that I'll be able to get it sooner. The GI, himself, said he was going to book the MRI on Wednesday so that we could get it by May/June... maybe its easier to arrange for a colonoscopy?? but, Stephen has always had small bowel involvement so the colonoscopy will have limited value. :yfrown:

But, you're probably right... if I were to see the problem, it might help. I was just thinking this morning that the fact that Stephen, for the most part, seems to be fine is making it harder to accept strong meds!:confused2:
 
I know the scope won't show much of the ileum but I still think a look at the colon is worth it independent of anything else.

I'm not sure of your system there and I have read happy's response but I'm still a little confused. Do you have the option to go privately or is it all done through the public hospital system?

Oh I so hear you Tess...:hug:...when Matt was diagnosed super quick and his disease was rated as mild to very mild I was like...whoa up there! My head was spinning! Well you know the rest of the story! (((sigh))) :lol:

Dusty, :heart:
 
Tess, what a ton that isgoing on for you...firstly, (((hugs)))!
I, too, would try to get the testing done before making a decision. It helps to better gauge your starting point before beginning, y'know? If the exclusive en helped in the past, I would start that while you are waiting. 5asa drugs were no help for us, but we are all different. I have a friend that controls his crohns with asacol and diet. I guess you can't know until you try. I am always game for a second opinion...helps to reassure everyone involved.
Sorry to hear about the ra diagnosis...icompletely understand "not wishing their kids sick, jus twishing mine better :( hoping for good news from you soon, and you are in my thought :)

ETA: sorry for all of the typos...been posting on my phone in the middle of the night at work lately and apparently it's smarter than I am lol!
 
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Thanks Angie. There's so much going on in my head that it's just SPINNING!!!

Dusty - our medical is all done through a public system. There are some small differences between provinces, in that some may allow 'some' private services (but I believe very little). But, when you are near the border, people do go across to the US to get tests done. When Stephen badly hurt his knee years ago, in August, the emergency doctor thought he had torn a ligament. He wanted the results of an MRI to determine treatment. We couldn't get an MRI until November. We were referred to a sports specialist who was indifferent to where the MRI was done. I called the US clinic Wednesday, had the scan done Friday, came home with a CD and the doctor had the radiologist's report on the Monday (opposed to waiting 2.5 months!).

In another instance, last February, my mammogram showed a 'mark', had more tests which were still inconclusive. Was referred up the line until I was meeting with the surgeon, who believed it was 'nothing' but wanted an MRI. By this time, it was April and the earliest MRI was for August. I went back and forth as to whether it was worth going to the US (as the surgeon believed it was nothing anyway) but finally decided, I would hate it if I waited until August, 7 months after the first indication, and found out it was, in fact, something. So I spoke with the surgeon's office, asked about if he was fine with an MRI from the US, and he said he was fine with that (perhaps because he felt it was nothing to begin with??). I booked the MRI for the following week but, in the end, his hospital called me with a cancellation a few days later so I didnt need to go to the US.

However, sometimes, the doctors here won't accept the tests/results from a US facility, as happened to the friend I mentioned above, I suppose for all the reasons Happy mentioned. But, I would hope that, at the very least, if a US MRI indicated a problem, then the Canadian doctor would follow up and run the same tests more urgently. (But, who knows...?) And, I have never been involved in anything other than these MRIs. I have no idea how, where, etc. if a different test were involved (i.e. colonoscopy or anything else).
 
Thanks for that Tess. :)

I had no idea it was like that. :( Public hospitals here will happily accept test results performed outside the system. Hell they have to cause when you come from a regional area chances are the tests were performed outside the system anyway! :lol:
Your explanation has certainly helped me to understand why the members on here Canada frequently talk of the long waiting times. :(

If you do go down the track of further testing I hope the waiting time isn't too long. :goodluck:

Dusty. xxx
 
I have to agree with Tiffany,
LDN has minimal side effects and is very safe much safer then the biologics. Even if it does not work for everyone what is the harm in trying it out? I know they are using it for a lot of illnesses that have to do with inflammation so even though the crohns trial was small looking at those other trials there is a relationship that can be taken from them.
 
Tess, I had heard that you had to wait for non-urgent medical care in Canada, but in your case they sound like they are urgent! The MRI team at my hospital is "backed up"...they are booking February seventh! I can't imagine being told something may be wrong and waiting so long to find out :( I *do* know our standards are different, but I can't believe they will repeat an MRI (super expensive) instead of reviewing the results...crazy!!
 
Yes, there are certainly holes in our healthcare. When we took Stephen to emergency (back in May), we took him at 7am, by 9am he'd had bloodwork, barium x-ray (I think??), ultrasound, stool samples and, by noon, they had him registered and were tentatively diagnosing him with crohns. This was on Monday, Friday he had the endoscopy and colonoscopy and started on the EN on Saturday. So, this was all great... there was no time wasted at all. However, I think once you are an outpatient, it's a whole different story.

I don't know exactly what they would do if I just went ahead and had my own MRE done... as Happy said above, I do know that my friend and wife had difficulties with their test results from the US... I don't know the details but the story was similar to what Happy said re different standards, liability, etc.

Before we took Stephen to Sick Kids hospital (where he was diagnosed), we had taken him to another hospital's emergency a couple of weeks earlier. At that time, he had also had blood tests and ultrasound done. I know when Stephen was admitted at Sick Kids, any conversation regarding comparisons with the previous tests were really brushed aside, one doctor made a comment that they would run their own tests and they seemed to have very, very little interest in the tests from the other hospital. Strange and wasteful! I can understand not wanting to give a firm diagnosis without your own tests but to totally disregard earlier tests seemed wasteful and inefficient.

I'll have to see how things play out...
 
That is such a shame that they disregard previous testing, it's an awful waste of time and resources.

I know when Matt was admitted the first time they re-ran tests but that was because his symptoms had changed from the testing the GI had done, but I think they would have anyway. They still accepted and wanted his reports and scans though. Then when we went to Sydney and turned up at a hospital ER there they scanned everything I had, I just on speck took all of his records with me, again tests were repeated but they still wanted his previous history for comparison.

I expect turning up at an ER to have tests repeated because being there means something has changed or worsened but anything outside of that I don't see what the issue is. A report on a test like an MRI, CT, ultrasound etc is the opinion of a radiologist, the specialist should be looking at those images and drawing their own conclusion independent of what the report states or who conducted it.

I wish there was a more cohesive system there for you.

Dusty. xxx
 
We just upgraded our data systems at the hospital I work at because we are working on being able to pull up a patients previous studies from any local hospital. The eventual goal is to. Be able to do it nationwide. I agree with dusty...whenever there is a change in condition that lands you in the er, some new testing is warranted. But when we transfer patients. To a larger facility (we are a small community hospital that can't handle super sick babies, neurology stuff, or psych. Patients) we always send our exams with our patients...there is no use repeating this stuff.
 
I suppose in Stephen's case, it was more a case as Dusty described - ER admittance because of 'new' or recurring symptoms that hadn't yet been diagnosed, so I can understand why they would run new tests but, I definitely sensed that they didn't 'trust' the other results??? Perhaps it's because they are a children's hospital and they look at things from a different perspective??

In Angie's situation, a transfer, I'm not sure how that would be handled. I'll find out when Stephen's transferred this year to an adult facilities...
 
I'm interested in how that transfer to adult services goes for you. Your son is just a bit older than mine so we'll be at that point shortly after you. I'm nervous about switching GI's already. I've just gotten used to ours and like the family centred clinic with the team approach. And... will they support EN as a treatment if we are ever in the position of wanting to try it again?
I'm hoping there's lots of communication between the two to make it a smooth transition...

As far as further testing goes, I'm hoping that once you are "in the system" you don't have to wait as long to get things done! I certainly considered crossing the border and paying for tests when we just couldn't get in here...
 
Hi S mom,

I, too, am a bit nervous about switching GIs. Have become comfortable with my son's GI now, his nurse and the clinic... wish we didn't have to change so soon.

But, I will certainly let you know how the transition goes.

:)
 
Haven't heard back from Stephen's GI... for now, taking that as good news! :) Am going to give it until tomorrow before I call and request a copy of the results.

Back to Emily... had the follow-up with our GP. RA has been ruled out :) BUT, screening for Lupus came back weakly positive :( GP assured me that all other tests were negative (rheumatoid arthritis, anklosing spond., etc.) and that the Lupus screen (believe it was the ANA) was very mildly positive. The recommendation was for a retest in 4-6 weeks. However, our GP wanted to refer Emily to the rheumatologist because of the family connection to Crohns and she expects the rheumi will run more specific testing. She reassured me to not worry overly about this result as it was very mildly positive and not a decisive indicator for Lupus. Emily's rheumi apptmt isn't until end of March. (By the way, she believes the calcification in the x-ray was probably due to past injury.)

So, we wait... Not celebrating just yet but I'm going to take the ceasefire while it lasts!

(Tomorrow, I see my specialist re the fibroids! :rof: I think I'm starting to lose my mind a bit with all these tests, follow-ups, etc.)

:)
 
Hi tess,

I am so plased you had the chat with your GP and that the results are looking good so far. I hope that helps while you are waiting for the next appointment. And I hope that then confirms that nothing dramtic is going on. But I do think it is great that you have followed this up.

And i hope your appointment was OK. Sometimes it is all TOO much!!

take care of yourself,
LilyRose
 
Tesscorm said:
I think I'm starting to lose my mind a bit with all these tests, follow-ups, etc.):)
Click to expand...

In the words of that great philosopher, Jimmy Buffet.."If we weren't all crazy, we'd all go insane!".

I like your decision to enjoy your ceasefire. Hang in there Tess!
 
The ceasefire continues :dance:

Finally received Stephen's results and they are a bit better than those from Christmas!

CRP dropped to 19 (from 31.5)
ESR dropped to 4 (from 30)
HGB steady at 124 (up from 123)

His results were a bit better in August but, I suppose, fluctuations will occur and, given that the tests were taken when he was feeling 'off' (he says he can't describe exactly how he feels, but just knows that something doesn't feel normal??), I'm happy with the results. :)

But, just have a question... there were some liver function results in the results that were sent to me. Results and comments on email are:

Albumin 37
ALT 56, AST 38 (both are slight high but are better than previous)
GGT 41

Liver function tests or levels have never been mentioned before. Are these tests normally run? Or were they run because the GI was considering methotrexate? I don't think I have to worry about this, but just curious???


Dex - like your quote! :ycool:


Thanks everyone for being here! Felt like I was being put through the wringer for a while there! :ghug:
 
Hi read,
Certain crohns drugs including methotrexate can affect the liver. If his are slightly high he may not be a candidate for methotrexate. They also should probably be checked again in a few Weeks.
 
My goodness Tess ! ((HUGS))

I feel terrible that I haven't been around lately, and I've missed being along for the ride on your roller coaster ! :(

I am so happy to have gotten to the end tho and see NO RA :)
I hope and pray that the mildly positive Lupus, turns into a false positive!

Also happy to hear that Stephen's inflammation has decreased !

You poor thing..you have really been through it lately :(
Hang in there hun, you're doing a fabulous job!

Always thinking of you, and I'll keep a better eye out now
:rosette1:
 
Hey Tess,

They may have run them as a part of a treatment decision but here they are normally done as part of a basic work up or as routine bloods.

Oooooo, love those inflammatory markers! :panda::panda::panda:

Dusty. xxx
 
Thanks all! :Flower:

Am certainly breathing a bit easier :lol: Will eventually follow up with the GI (his next apptmt isn't until April, unless something comes up...), I do want to discuss the continuing inflammation, the liver results and LDN as maintenance again. But, I don't think it's urgent so we'll take a break... :whistleinnocently:

And, as Emily's appointment isn't until the end of March, I'll just put it out of my mind as much as possible:whistleinnocently: :whistleinnocently: (I've forbidden myself from googling anything that begins with "L" :emot-cop:)

:ybiggrin::heart::ybiggrin:
 

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