Stephen's update and transfer

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Tess,

At BC Children's hospital the fecal calprotectin test does not seem to be routinely ordered. We have had it done but we had to take the sample to the adult GI office. Apparently they are just starting to use the test in the pediatric clinic and I got the impression that they had not run the test on many kids in the ped clinic yet.

I am thinking that somehow Canada is a bit behind the times when it comes to the fecal calprotectin test.
 
Hello dear Tess, my EN pal.

The GI sounds a lot like V's Saint with these exceptions:

1. The Saint always always tests. 6-8 vials blood, stool, whenever any changes in her status and at every f/u. I would not be happy with no blood work or stool studies. Much can change since July and the statement "maybe he sees 20/day like him" is (sorry) patently ridiculous in this context. As a scientist who has worked in diagnostics I feel comfortable making that strong declaration.

2. What aboout a cap endo? I just was talking about this in Clash's thread. It is the gold standard for ileal disease dx. MRE/SBFT are inferior tools to actual photos. Why not do one? It's a breeze to go through next to a scope.

3. The Saint has had pts on LDN, worms, GCSF, another odd one I forget what it was, (thalidomide I think) and he was quite willing to use it though said he had never gotten a good result from any of them. He too thinks V is undertreated. As you know we tried Humira before pred and it was a fail. I went top down when I finally decided to treat as I wanted results FAST. So I am a top down advocate, sorta. V had a dramatic change in QOL when I decided to use Humira. Had she not, I may not have been so eager. And she had the cap endo that showed "significant" TI inflammation.

If it were V I'd want a scope and cap endo before using big gun drugs.
I was in your exact place last year, when EN ceased to be enough for her.
I totally understand. :stinks:

4. You know The Saint loves lactoferrin. He too admits it isn't great for small bowel disease. But he orders it all the time. Makes no sense to me.
 
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OMG, I'm just so confused! I'm sure most, if not all of you are like this but, I NEED a plan of action in place... I know I have sort of a plan with the review of the MREs but that only takes me part of the way... :( then what?!?!? I've literally thought of nothing else all day! LDN - yes, no, yes, no, yes, no... Remicade - yes, no, yes, no, yes, no...

The GI has freaked me out a bit in the sense that I don't know how much time I have... I'm feeling under pressure to get all the answers TODAY and I just can't. :frown:

Does anyone know how/where I can find an imaging centre that provides MREs? I haven't been able to find one, they all offer only MRIs (with the IV contrast, not the oral contrast). (By the way, before I posted the question here, I did send the GIs nurse the same question and he agreed that he'd like the oral contrast MRE.) Are MREs that hard to get?

As much as I don't want the strong drugs, if I could be sure that Stephen needed remicade and that LDN wouldn't suffice, I think I'd feel better! But it'll kill me to give him remicade if I'm not convinced that LDN wouldn't do the job and it'll kill me too if I convince him to do the LDN and he ends up with complications!

I wish I wasn't such a control freak! :voodoo: Wish I could just listen to what the GI said and then say 'okay' without a doubt in my head! But, NOOOOO, I've got to friggin' overanalyze every little aspect! Was even considering asking GI if we can test for NOD2 gene to see if he is predisposed to fistulizing/stricturing (thanks, MLP for that great Forget webcast! :lol:) because, maybe, he wouldn't need remicade AS MUCH!

And, really, the fact that the GI ran no tests just isn't sitting well with me. I so liked him and found him so easy to speak with and am sad that I'm feeling that twinge of 'doubt/disappointment'. I would have been so much more comfortable if he done as The Saint does and ran tons of tests!

OMG, what am I going to do!?!?! :yfaint: Sorry guys, I'm just venting (but I do need the info on the imaging centres if you have it!:redface:)...
 
Sorry for your frustration!! Vent away:voodoo::voodoo::voodoo:

Maybe once all the tests come together and you know where Stephen stands then the decisions will be easier to make.

I'm sorry the doc let you down with testing. Have you decided on who you are going to choose for the 2nd opinion? Can the GI give you any idea of where a radiology facility or group is located that provide MR Enterography? C's GI group is affiliated with the childrens hospital and they have MRE there.

I hope you get some answers soon and are able to find some peace in them and the decisions you and Stephen are making!!
 
Hugs...
DS 's Gi is also in a children's hospital which where he had his MRE.
The schedulers only called it an MRI though enough though he drank barium and had iv contrast.
I know the decision is hard we went through the doubt each and every drug.
Thankfully we had a good Gi and Rheumo who laid out the facts for us .
 
Unfortunately, the GI can't help me with MRE now. He did agree to put in a request for an MRE but said he won't be able to have it scheduled any sooner than 4 months (pathetic, eh?) and, when I asked if he would accept an MRE from the U.S., he was a bit surprised and said no one had ever done that before but he was fine with that (we discussed that the MRE he schedules in 4 months will be a follow-up to whatever treatment we decide on now).

Clash - Haven't decided on the second opinion yet. Was actually going to ask you guys... do you ask your GI for the second opinion or your GP? And, I'm sure you're right... once I see that the ball is rolling with MREs, tests, 2nd opinions, I'm sure I'll feel better :redface:
 
Oh I didn't realize what you were saying about finding a facility. I get it now. It's weird when I type in your area and Radiology facilities with MRE the only ones that come up are in Boston and Valhalla and the like which seems to be quite the distance from you. I just can't believe that it wouldn't pull one up in the Buffalo area.
 
Julie (imaboveitall), meant to ask you about V's initial EN... She never did 'exclusive', right? But, she was on 3000 cal per day??? Vaguely asked Stephen if he would consider redoing exclusive EN for six weeks to try to reinduce biochemical remission (and give us some time if inflammation is the concern), Stephen wasn't too enthusiastic. Said he would if he HAD to but... So, I'm trying to figure out the reasoning behind The Saint's use of EN without the exclusive period??? :)
 
Clash - I found a number of imaging centres in Buffalo and nearby but every one I've called said 'no' to the MRE, only MRIs. I PMed Angie and Dutch as they aren't too far from Buffalo... Dutch may have a lead for me :)...

This may have seemed strange to the GI but we've gone this route before for Stephen :), he hurt his knee years ago in soccer (in August) and the earliest we would book an MRI was November!!! Well, with hockey season around the corner (in September), that just wouldn't do... So, I got him an MRI in Buffalo a couple of days later and we got him into physio within a week. He was already back at hockey by the time our MRI would have been scheduled!
 
Whoa, loads of catching up to do! :ywow:

Okay, my two cents worth...

Yes to getting a good amount of current baseline testing done. As you have established an MRE is the way to go with imaging. It was very accurate at diagnosing the exact amount of inflamed small bowel Matt had.
Also yes to faecal calprotectin and I would also have another battery of blood tests done, including Iron studies and Vit D, so that all testing is done within a small time frame. Also ensure any current symptoms are documented.

I would not make any decisions until all that is done so that you know what you are dealing with. Armed with that, and the previous images, a clearer picture will emerge as to how the inflammation is progressing. I would then discuss again with the GI and then go away and discuss it with Stephen...

What the imaging and tests revealed.

How the GI feels his disease progressing.

What the opinion of the GI is regarding treatment based on the latest results.

What treatment Stephen would prefer based on the information at hand and why.

What you think would be beneficial and why.

Does Stephen want a second opinion? Do you want a second opinion?
(You could ask either the GI or GP for a referral)

I do feel you have time on your side Tess, I know you have been hit for six but you don't have to rush into anything. I do however think that the inflammation needs to be addressed if it is present, I know you know how I feel about inflammation so I am stating the bleeding obvious by saying it! :lol:

Given Stephen's age I think it is critical he is part of the decision making process, I know you do that hun, that way he is more likely to remain compliant when he finishes school and moves onto university.

Once you get a plan of action into place you will feel more in control. It will focus and ground you. You have already started with the MRE and soon the rest will fall into place.

Dusty. xxx
 
Aw Tess...I so know how you are feeling...I get that way, obsessed and frantic.
I was exactly there last winter when we ended up with Humira. Many hugs :ghug: and understanding. Having an obsessive, analytical nature, I know, I know. My head would get to the exploding stage.

The Saint did test V for NOD-2. She was negative. So if he is offering it I'd do it.

She never had an MRE, just fluoroscopy with the UGI/SBFT and that he said was to look for stricture, he said he doesn't rely upon it to detect inflammation. He wants the pillcam. Again DO A CAP ENDO, those photos cannot lie!

He said as best I can remember, regarding why he didn't eliminate food, that he does not believe food intake has an effect one way or the other in reducing inflammation in pts with no food allergy/sensitivities/intolerance.. He never said why and at that stage I was too freaked out as she was dying, to question further. He did say the formula would sustain her if she ate nothing but that if she "felt like" eating she certainly could. He is more experienced with using EN than the usual USA doc so I do think he knows whereof he speaks. I recall him saying food has no effect on IBD, as it is an immune disorder not a gut disorder per se.

Re: second opinions, I have NEVER asked for one but The Saint (more eveidence his ego does NOT exceed his ability) offers one often. He says he will "make it happen" in NYC, DC, PA "whichever is easiest" for me as he has colleagues he trusts in all three places. I always refuse.
 
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UGH Tess sorry so late to the party here. You can not even begin to decide on treatments when you have already decided you want imaging and test results. I agree with Dusty that once you have those and have a discussion with doc then you can make decisions.

Have you found an imaging center yet?
 
Tesscorm said:
(really, Stephen's not a drinker,
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So apples DO fall far from the tree!!!!

Just one more comment...sometimes docs are overly in a rush with things. Remember when O's doc was saying REmi wasn't working all the way said he wanted to use MTX and was walking out the door to get a nurse to teach me to give injections. I basically had to tackle him and say whoa fella what about EN. THen he was all "yes, I love EN...works blah blah blah" I still am really confused as to why he didn't offer it and it is the one nick in his armor in my view. So go ahead and slow the doc down if you need. THese are big decisions and Stephen is your child. Yes, he is way more comfortable and sure REmicade will work but maybe something else will also.

Oh and as for EN, when I finally got our doc tali=king about EN he did say not good for maintenance but he did say some patients just cycle on ond off as needed. He said some go a month or two and some could go years between EN courses. Of course if my child only went 1-2 months it wouldn't be an option but it has been a while for Stephen.

There now that I have muddied the water nicely I will go!
 
I was feeling like you didn't like me anymore! :cry:

:)

Hopefully, I may have found a clinic!!! (I was getting a bit worried cuz I just wasn't having any luck!) Just waiting to confirm... :)

Just saw your second post... I did take you up on your suggestion re another round of exclusive EN... :eek Stephen was not too impressed! Although, poor kid, did say he would if he had too.

Re falling far from the tree... were we once in the same orchard!?!? :lol:
 
Goodness me - I go away for 4 days and everyone else's life doesn't stop and wait for me?? :lol:
You know you sound just like me! I go through so many arguments for and against medications over and over in my head. Our GI isn't into the top down approach. He wants to try the 6mp first as he thinks Remicade is alot stronger and to save it for when really needed. Wish these GI's were all on the same page so as not to confuse us worriers even more.
Glad you may have found a clinic for the imaging - hope that gets sorted soon. I wish you good luck trying to make this decision, it is so incredibly hard. I wouldn't worry too much about taking a bit of time to think things over. I have managed to delay our GI giving 6mp for 4 months so far :ylol2:
 
Amen, Sascot, the (VERY) different treatment approaches cause doubt and worry galore. Who is right? Why don't they agree?
When I was struggling to accept Humira, The Saint said it was "safer" than 6-mp as far as mutagenic effect. He allowed V to eat while on formula; most docs do not. He's used unconventional and controversial tx, i.e., worms, GCSF, fecal transplant, naltrexone. One of his pts had a stem cell transplant and is essentially "cured". His was the worst case of Crohn's he'd ever seen, he said.

During one discussion on naltrexone he said while he had minimal success in his pts who tried it, that due to the "highly individualized" nature of IBD, one cannot predict which pts shall respond favorably. He has no doubt it DOES WORK In SOME pts as do the worms, etc. We discussed MAP, some folks' IBD is likely MAP related and others are not.

V's pediatrician suggested curcumin, specifically a brand called "Curamin". (he name alone is clever marketing and the website is laughable; to me anyway) Said it may get her off pred. :eek: I was like, um...ok...drum circle next please...:yrolleyes:
Aside: I do know about using pure curcumin/turmeric but not when marketed as a panacea and in pure form, not compounded into a tablet and called a clever name.

A very confounding thing for us all....ahhh...time to stab...:voodoo::voodoo::voodoo::voodoo::voodoo:
 
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:) Have found a clinic!! BUT, they would like a script from the GI (when I had asked the GI if that would be necessary, he didn't think it would be...). So, got back to the GI but he's away this week. But his nurse/assistant has been super helpful so far with helping to get his past MRE CDs, etc. and she promised to put it at the top of his To Do list for Monday. It's one of those 'two steps forward, one back' :) I'm going to call the clnic back tomorrow and see if we can just schedule the apptmt and I'll fax them the script as soon as I get it.

I actually prefer it this way... I was a bit nervous about driving all the way, paying for the test and then still NOT having what I need to make a decision! :)
 
Ugghhh I hate two steps forward one step back but it sounds like you are heading in the right direction! Yay! I understand about the the preference, I would be the same way!
 
I was wondering about the script since you were going to get an MRe.
We always have had to have one.
Hopefully they let you schedule it without the script.
I know our hospital won't schedule until they have the script.
Also ask about fasting before
 
Yeah, I much prefer having the script... I was a bit nervous when the assistant told me the doctor said it wasn't necessary. I have to wonder if he thought I wasn't even going to end up getting one... I didn't realize that it's way more difficult to find an imaging centre that does MREs compared to MRIs! Found tons of MRI centres, lots of MRVs, MRAs but NO MREs! Most of the places hadn't even heard of it??? I remember reading here that it's a fairly new test/technology; maybe that's why???

In any case, I've found one, now just have to get the paperwork in order. Hopefully, I can schedule it for next week and pick up/fax the script by Monday!

Will confirm about the fasting too... :)
 
I did ask... everytime they said they did ab MRI (and I explained it was for crohns), I asked about the oral contrast and then they'd say 'no'. I then emailed the doctor to ask if the IV contrast was sufficient and he said 'no' :runaway:
 
Farmwife,
An MRE is actually different then an MRI with contrast. When they say MRI with contrast they are usually talking about the IV contrast.
Tess,
MREs started being used about a year or two ago. In fact when caitlyn was first diagnosed I asked about MRIs and was told they were not used for Crohn's disease. I was upset because i did not like that she was exposed to so much radiation with CT scans and floroscopes.
After he second year of diagnosis we switched to a different practice and after speaking with them about MRIs the doctor said he had heard about a new type of MRI ( MRE ) being done for crohns and he would look into it. He did look into it and caitlyn was one of his first patients to have it done.
 
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Yep, gotta have that oral contrast Tess! And loads of it, bleh! But it is well worth it. :)

Matt had to fast for 4 hours.

When you guys say you need a script what are you talking about? Is that the same as referral?

Dusty. xxx
 
Script is short for a doctor 's prescription similar to when he would order a drug.
A referral is when a doc recommends you need to see specialist xyz.
 
Just curious... my son had an MRI this week. He had to fast (fluids only) for more than 12 hours, then when he got there, he had to drink 1.5 liters of juice mixed with 'sorbitol'. Then he had an IV that they injected some type of contrast in during the test. What's the difference between this and the MRE?

Good luck with everything Tess! It's quite stressful changing doctors. We have now changed from pediatric to adult this past month. Interestingly, while the pediatric GI was talking about Remicade as the next step, the adult one said she preferred to have us change from MTX to Imuran as the next step. They all seem to have their own individual preferences and it's hard to decide what route is the best!
 
my little penguin said:
Script is short for a doctor 's prescription similar to when he would order a drug.
A referral is when a doc recommends you need to see specialist xyz.
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That is what I know it as too. So why do you need a script for an MRE?

Or is it when you a doctor orders a test there it is called a script?

@ S mom - From what you describe it sounds very much like an MRE to me.

Dusty. :)
 
I think MLPs definitions are correct.

The two times I've gone/going to the US for MRI/MRE, the 'instructions' for the test were called 'scripts'. When we took Stephen for his knee, the imaging centre said they did not need a script, however, perhaps because the MRE is a more complicated, they are asking for the 'script'. When my doctor orders labs or 'typical' x-rays (sore ankle, etc.), it's on a 'requisition' form.

I think the three terms may have specific definitions but, maybe, are often interchangeable??? Especially when, as in my case, I'm going from Canadian to U.S. terminology???
 
I agree Tess, when C has MRI the nurse called it an order but when we arrived at the center the tech said the nurse had just faxed the script over. So, if that is what you all are discussing maybe they are just interchangeable but technically have set definitions.
 
The reason you have had trouble finding a place that does MRE's is because the radiologist who reads the films must have extensive training in order to be qualified to handle this procedure.

This is why it is still mostly done at major medical centers w/teaching hospitals here in the US and if you want someone who has expertise in pediatric MRE's you will need a children's hospital affiliated with a teaching hospital - and there may still not be anyone qualified to do the exam there.

A while back I suggested to someone (was it you?) that when deciding what facility to use for an MRE it was important to ask how many pediatric MRE's the radiologist there had done in the past year. Just because they do MRE's doesn't mean they have done any pediatric ones or more than one or two. If you have a choice between a center that does many vs a center that does very few - obviously you want the one that does a lot of them.
 
Thanks for clarifying! I really hadn't realized that booking an MRE was going to be difficult at all! I'm all the more grateful that I've been able to find a location! :D

Re your comments re the experience of the radiologist - is your concern the actual MRE process/test or the interpretation of the data?

And, perhaps, you can answer... is the person who runs the test typically the same person who interprets and writes the report?

Thanks
 
Ah okay, thanks. :)

It is very rare here that the term script here is used for anything other the prescribing of medication.

The forms used for bloods, imaging and so on are all called referrals as are letters to specialists.

@Tess - I don't know about the US but here a radiographer is the person that performs the imaging and the radiologist (doctor) is the one that interprets the images and writes the report.

Dusty. xxx
 
I think it's the same here (in Canada, eh!) - radiographer and radiologist. This being the case, my plan (I've always got some plan! :lol:) is...

Since the GI asked me to get CDs of his past MREs (from previous hospital) because the reports made note of different 'issues' (so difficult to compare), he was going to ask his own radiologist to review the original CDs. So... I haven't taken the old CDs to him yet as I thought I would deliver the new CD at the same time; this way, he could ask the same radiologist to review all THREE MREs and eliminate any question of 'interpretation'. (Thought if I take over the first two CDs, he may just have these reviewed and then just accept the report of the new MRE - again, we may end up with some inconsistency. I don't think 'inconsistency' is typically a big problem but, figure, if I'm going through the trouble of doing all this, I may as well eliminate whatever questions I can...)

Mommies and efficiency/multi-tasking just become second nature! :lol:
 
Well done Tess! Upstairs for thinking! :thumleft:

You have elevated multitasking to a whole new level! :lol:

Dusty. xxx
 
It sounds so simple doesn't it? Just get the procedure done somewhere and then take the CD to your guy. But in my experience it is not simple.

Yes the radiologist reads the "films" and when I spoke of experience it was in terms of the radiologist's experience.

The number of MRE's they've done also translate into how comfortable the techs are with the procedure and how likely they are to do it accurately or according to the "rules".

The radiologist's experience affects the quality of the report. It also effects the actual procedure if the radiologist directs them to retake an area after reviewing the initial results.

The techs experience obviously may affect the quality of the images upon which the radiologist is relying. Hopefully the radiologist intervenes if quality is an issue but I can easily imagine that there are times when it is unclear whether there's an issue of quality vs. an issue of difficulty getting a good result due to the severity of disease.

As for taking all three to one doc for review. Grimace. This is not that simple either. Besides some differences in the way each place does the exam (I know there are = just ask people how much contrast and what kind) there's a long list of variables that make a direct comparison impossible. Things like what kind of prep they require, the quality and age of the MRI, the quality and age of the computer program, the speed at which they ran the test...there are probably a bunch more I don't know about and can't think of.

So don't be surprised if the doc reviewing all three studies hedges his/her opinions at least a little. Hopefully the three studies will be similar enough that he/she will have very little problem making comparisons over time.
 
Thanks for all the info Patricia! Yes, there are so many variables :ybatty: but, as much as I would LOVE to control all of them :D, I just can't. Unfortunately, at a certain point, I have to just hope for the best.

I had such a tough time even finding a centre that can perform MRE's that I don't have the luxury of choosing between levels of experience. Truly, my alternative is to have no MRE done now and choose a treatment (LDN or remicade) based on 6 and 12 month old MREs which, themselves, leave questions unanswered (even though they were done at the same hospital).

The GI requested the films/CDs of the earlier MREs to try to answer some of the questions and, hopefully, a new MRE will provide a bit more recent info.
 
I feel so nervous right now... I'm so happy in the little bubble that I built BUT I just received the MRE report and, while I don't understand it, I can stay in my bubble.

I actually thought about just ignoring it until Monday, but... ugghh, I need to know if my worst fears are justified. :( So here goes, can anyone tell me what it means?


There is a short segment jejunal wall thickening and increased enhancement in the left upper quadrant of the abdomen. There is moderate small bowel wall thickening involving the distal ileum through the level of the ileocecal junction. There is mild hyper enhancement of the involved segment of small bowel wall with relative fixation of small bowel loops. Colon is unremarkable through the level of the rectum.

IMPRESSION: There is a short segment jejunal wall thickening with mild hyper enhancement consistent with Crohn's. There is no evidence of associated bowel obstruction. There is a lengthy segment of terminal ileum extending through the level of the ileocecal junction that demonstrates wall thickening and moderate hyper enhancement. Fixation of bowel loops is noted. Findings are compatible with active Crohn's disease. Small bowel luminal narrowing is noted in the pelvis however there is no evidence of proximal small bowel dilatation.

So what does this mean? :eek: Does it sound like there is some urgency in beginning a treatment?? That's probably a useless question because there's probably no way to tell, right?

I'm just feeling... :eek: :voodoo: :yfaint: :ymad: :yfaint: :cry:
 
I can't help you with the report but just wanted to send support!! I hope the results equate to you guys being able to choose the treatment you are most comfortable with!:ghug:
 
Do you have an earlier MRE to compare it with?

Just waiting for Dusty to come along and weigh in......

Obviously there are issues but are they getting worse or better? Dusty will mild inflammation show up on an MRE or just damage?

Has the G.I. shared his/her thoughts yet?

Sorry I am not more helpful :(
 
I do have two prior MREs but, I suppose without really understanding them, it's hard for me to 'compare'. Even with his prior two MREs, his GI had some questions because the radiologists referred to different 'issues' so had the same question - what has actually changed. Stephen's new GI was going to send the original film to his own radiologist to have him review them. GI clinic is closed today so won't hear from him until, at least, next week.

If it helps in comparison, this is what was in his last MRE in May.

-There is a long segment of significant circumferential wall thickening of the terminal ileal loops till the ileocecal junction, especially the terminal ileium, associated with mild to moderate luminal narrowing with diminished peristalsis, stranding of the surrounding fat, fibrofatty and vascular proliferation. The involved distal ileum loops show evidence of restriction on the diffusion-weighted imaging.
-The multiple slightly prominent and enhancing lymph nodes throughout the mesentery and in the right iliac fossa which also show evidence of restriction on diffusion weighted imaging, likely reactive in nature.
-The proximal small bowel loops and colon are apparently preserved.
-No evidence of deep collections free fluid in the abdomen or pelvis. No signs of enteroenteric, enterocolic or enterovesicle fistulas. No evidence of bowel obstruction.
 
Ergh! Sorry what this is says to me is "jsDfjdfshjh,ajsdfdfc.kdshf.hdS"...mumbo jumbo mumbo jumbo. Wish I could help but holding out hope Dusty will be a long shortly.

I totally understand why you all get copies of tests all the time but this is actually why I don't. The trying to guess what it all means would drive me crazy (well crazier than I already am). And in the end it really wouldn't matter to me because I have zero zilch medical experience and would have to rely on the doc's interpretations and recommendations anyway. So basically I am useless to you.

When is Stephans next appointment with the GI?
 
Comparing the two actual studies is a good idea. DIfferent doctors may describe similar findings in different ways. I guess I'd like to know if the doctor can see progression from last MRE and how active is "active." I'm also interested to know what " increased enhancement in the left upper quadrant of the abdomen" might refer to. Note there is no mention here of the abnormal fat stranding or lymph nodes that were mentioned in the prior MRE -- that could be improvement. The language (mild and moderate) of the current reading doesn't sound hugely urgent though I have no expertise here. I can certainly understand your feelings--love your emoticons! Let's hope the comparison will show that the inflammation is stable or improving.
 
Crohnsinct - I totally get what you're saying... I've sometimes wondered if all my researching, learning, etc. will really change the course of Stephen's disease or treatment and, in the meantime, I'm just driving myself crazy. At the end of the day, with no medical background, am I really going to go against the GI's recommendations? BUT... BUT... BUT...
you really didn't think I could be that complacent and accepting for long, did you?!?! :lol:

By learning and trying to understand it all now, I can go into the appointment 3 steps ahead... You know how you always wish you'd thought of that question AT the apptmt, well... I can ask those initial questions here and now and get more preliminary questions/thoughts from so many here... many (most) of whom know so much more than I! :) By the time I get to the appointment, I can skip some of the questions that have already been answered and move on to the more serious questions/concerns. Hope that made sense :)

We don't have an apptmt set up... we'd planned that I would give him the films from the two old MREs plus the new one and he would have his radiologist look at them. We would then speak by phone and decide what to do... (he said then we'd set up a follow up apptmt in January).

Thanks xmdmom, yes, I think having one radiologist look at all three films at the same time would make things so much clearer! It would be so much easier if the GI tract was broken down into consistent sections/lengths and every test commented on each of the sections... THEN an easy comparison could be made!
 
I hear ya sista! I do the same but getting test results is just where I draw the line...although easily drawn since our doc and hospital don't offer and make you actually ask and I am so shy (YES SHY) about those things I probably wouldn't unless I had a real need.

hahaha like you need us to give you MORE questions hahaha.
 
Shy!!! :rof: Oh,yeah, right..., I totally see THAT trait in you... like you were blushing in those balloons! :rof:

OMG, if only you knew how many questions in my head right now but.... I do try to stay focused on just one 'subject' area at a time (can you have ADHD and OCD together??) Right now... I've just gotta understand this MRE... and then we'll move on... :redface:

:)
 
Tesscorm said:
Right now... I've just gotta understand this MRE... and then we'll move on... :redface:

:)
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O.K. then...see you in January! Hey btw if the doc said January then I am guessing it's nothing too pressing. I mean really, why would he leave Stephan alone for almost three months?
 
No, it's not that he was leaving Stephen until January... since I wasn't comfortable starting the remicade based on 6 and 12 month old MREs that left some questions and I had asked about LDN, we agreed that I would get the old MRE films and get an updated MRE from the U.S. and the follow up to decide on which treatment would be over the phone (and the next face-to-face apptmt would be in January). I guess this could change dependent on the results and treatment decision???
 
Good luck with getting answers, where it same position with MRI. Sarah is both netter and worse. The word 'odd' has been used.

Hopefully the review will give you both the information you need.

There another member aussie who seems really good at making reports understandable
 
You wrote "am I really going to go against the GI's recommendations?"

The thing to remember is that in many cases, there is more than one acceptable treatment path. It's useful to ask your GI doctor, "What other options are possible? What are the pros and cons of the different treatments?" There's no guarantee for any treatment... and no treatment plan is without risks... so your GI will give you his/her recommendation but remember another GI may give you a very different recommendation....
 
I am planning to speak with Stephen's GP about all this and his thoughts re a second opinion with another GI (but, I may as well wait until I have all the info available).

I understand what you're saying and it just adds to the difficulty of the decision! As it is, it's a complete turnaround from his ped GI who had been 'happy' with EN. He had suggested metho might be necessary, dependent on lab results and, I assume, was happy with the results as he never suggested treatment change after the results???

I'm really thinking that I may just ask for the LDN prescription. While I am trying to get all this together, there'd be no harm in Stephen starting the LDN... and we can always move onto to something more if necessary.
 
Hey Tess...:hug:

IMPRESSION: 1.There is a short segment jejunal wall thickening with mild hyper enhancement consistent with Crohn's. There is no evidence of associated bowel obstruction. 2.There is a lengthy segment of terminal ileum extending through the level of the ileocecal junction that demonstrates wall thickening and moderate hyper enhancement. 3.Fixation of bowel loops is noted. Findings are compatible with active Crohn's disease. 4.Small bowel luminal narrowing is noted in the pelvis however there is no evidence of proximal small bowel dilatation.
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-2.There is a long segment of significant circumferential wall thickening of the terminal ileal loops till the ileocecal junction, especially the terminal ileium, associated with mild to moderate luminal narrowing with diminished peristalsis, stranding of the surrounding fat, fibrofatty and vascular proliferation. 3.The involved distal ileum loops show evidence of restriction on the diffusion-weighted imaging.
5.The multiple slightly prominent and enhancing lymph nodes throughout the mesentery and in the right iliac fossa which also show evidence of restriction on diffusion weighted imaging, likely reactive in nature.
1.The proximal small bowel loops and colon are apparently preserved.
-No evidence of deep collections free fluid in the abdomen or pelvis. No signs of enteroenteric, enterocolic or enterovesicle fistulas. No evidence of bowel obstruction.
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Hyperenhancement = mucosal disease. Superficial.

Bowel Wall Thickening = Transmural disease. Deeper.

1. The jéjunum is the segment of small bowel adjacent to Terminal Ileum. It would be a pattern consistent with the skip pattern of Crohn's and since it doesn't say anything of it's actual location with the jejunum I am assuming it is close to the Terminal Ileum. As you would know this was not present on his scan last May, so to me this indicates spread of the disease.

2. The area of Terminal Ileum involved looks to be unchanged, hard to say though as no measurements are given, but note the mild has gone from this latest and only moderate disease is mentioned.

3. I'm not sure if this is referring to the same thing but in my minds eye they sound related. The report from May states restriction and now fixation. This would be consistent with chronic inflammation as the process of inflamed bowel loops overlying each other, or over healthy bowel, over times will lead to them 'gluing' to each other. This process is what causes fistula's to develop and extend from one area of bowel to another.

4. This means that although there is narrowing present it is not enough to have caused obstructive symptoms. If it was obstructive you would expect to find the bowel just above the affected area to be dilated or 'ballooned out'.

5. This may have been acute inflammation in the surrounding tissue that settled once the inflammation in the bowel went from acute to chronic.

increased enhancement in the left upper quadrant of the abdomen.
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I am not sure what this is referring to. It does not mention bowel and they have stated the colon is clear so is it an organ or just an anomaly?? The organs in the left upper quandrant are the spleen and pancreas.

It is difficult to interpret when two different reporting styles are used so please take what I have said as just my opinion and not an educated one at that! :lol:

Hopefully one radiologist interpreting and comparing the films will have much clearer idea of what is going on.

To be honest Tess it is looking like the inflammation has gone from acute to chronic in the Terminal ileum but the inflammation, while not deteriorating hasn't improved either. So treading water but the effects of that chronic inflammation is still causing some issues - the fixation of the distal bowl loops. The other area of concern is the jejunum and the apparent appearance of disease there and as I said, I am unsure of the significance of the left upper quadrant hyper enhancement.

Dusty. xxx
 
Johnnysmom said:
Obviously there are issues but are they getting worse or better? Dusty will mild inflammation show up on an MRE or just damage?
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It is possible for mild disease to show up on an MRE and that would be evident in hyperenhancement as that is mucosal disease.

Just for reference Tess: You are probably well aware of my dislike of inflammation simmering away. :lol: Stephen obviously has stricturing disease but just keep a note that chronic disease, by its very nature, that is under treated can lead to the complications that those with fistulising disease suffer with.

Dusty. xxx
 
Thinking of you and hoping that you'll have all this sorted out soon! I'm sure in the end, you'll be comfortable with your treatment plan.
 
Never easy to wait.
Hope the GI can review quickly and you can come up with a plan.

Not to scare you but something I found out at conf. That I didn't know.
We focus on the cancer risk from the drugs but there is a risk
As well when the disease is under treated.
Small bowel is 50-100 times that of a normal person.
Colon increased risk as well
You get the idea.
So for DS at least no inflammation is acceptable to me.
Inflammation leads to cellular changes which can lead scar tissue but also cancer
If left to keep going through that cell changing loop.
I have not found a paper it just my theory .
 
Tess,

Difficult decisions. :( Hoping the new G.I. has some knowledge about LDN and can give you some good advice. We recently moved and switched G.I.'s and it is good to hear a new perspective. Just make sure that until January one G.I. doesn't think the other G.I. is on top of this. My new G.I. didn't agree with Johnny's meds and wanted to discontinue the Allopurinol. So if you stick with the old G.I. there is a chance new G.I. will have a different recommendation. If you are at a crossroads and need to make a change might just be best to consult new G.I. now. Just my 2 cents worth.

:ghug: Never any great choices with this disease. :(
 
Thanks everyone!!!! :ghug: :ghug: Sorry I sort of bailed yesterday... had to actually 'work' a bit at the office :ymad: and then had a dinner last night (also, while I hadn't understood the details, the outcome of the MRE was sort of what I expected... so I had to crawl into my cave and lick my wounds a bit! :redface:)

I've got to 'digest' all the info a bit, always more questions brewing but just have to think through what questions I actually have!

But, really it so sucks (as you all know!)!!! :ymad: I totally agree with eliminating the inflammation NOW and know he needs some meds (pisses me off because I always wondered if his last GI had him 'on acceptable hold' as he knew transfer was imminent and I should've trusted my gut and gotten a second opinion months ago! but, what's done is done!).

I feel like I'm left with the choices of a biologic and, if something happens, regret that I took this step! or Try LDN and if inflammation turns into complications, regret that I took this step! :ymad: But, while I know this is where I will end up, I do need to speak to the GI first before making any decision and, hopefully, the decision will be easier to make after speaking with him and getting his thoughts.

:ghug:
 
Aw Tess...story of a mother's life huh? Shoulda, coulda, woulda. We can't win for losing. I know you know this but we do the best we can with the info we have and I know that all your decisions are made with great care and love (and sober I hope) and this next one be made that way too! Good Luck!
 
Tess :ghug::hug::ghug::hug:

I'm right there with you in the questioning of the "what if's"; I'm also right there with you on the studying of the reports ! I have so many people tell me that it just makes them crazy to read all that stuff, research, etc. Well, not me..It seriously calms my nerves; And I have a feeling it does the same for you :heart:

I am with a few others here in that no inflammation is the only good inflammation. As you know, I have first hand experience on the watching and waiting to see what the "mild" inflammation can and will do if left untreated.

My thoughts are with you and I wish you the best of luck in your and Stephens decision on what the next course will be :heart:
 
Our Tess...:hug::hug::hug:

Walking the tightrope and balancing the world on your shoulders at the same time surely will send you away to lick your wounds hun. :heart:

You are doing everything so wonderfully well Tess. I know you likely aren't thinking that of yourself right now but you are. Keep doing what you are doing and the answers will come. It doesn't mean you stop second guessing yourself and 20/20 vision in hindsight really is a bitch but lets face it...not one of us would go down a path if we thought or knew it would hurt our precious child. If only it were so simple as, if they take this medication x might happen but if they don't nothing will.

I don't wish to put words into T's mouth but in many ways we have travelled a similar path and seen the havoc that untreated Crohn's has wreaked upon our daughter's (hugs to you T!). I know that isn't what is happening with Stephen Tess but it does make you think a little differently. It does't make the decisions any easier as such, it's hard to explain...maybe what it does is even out the fear. Does that make sense? I hate the meds with a passion but I also hate not having them. How sucky is that! :lol:

You are a sensible, wicked smart and well balanced lady Tess and Stephen is blessed to have you. You have time on your side Tess. As you have said...make preparations for the GI appointment and then speak to him of your fears and concerns and ask him straight out...if this was your boy what would you do and why.

Much love, :heart:
Dusty. xxx
 
I seem to have kinda missed the last couple of pages. The dilemma's we face are not nice! What if's are the worst. I'm still not sure if I'm doing the right thing not having Andrew on medication. Good luck with your decision making - sometimes I think we should put all our options in a hat and pull one out ;)
 
Tess. I can not offer any advice on treatment. I know how it feels to second guess yourself. You have worked hard to educate yourself and do your best for Stephan at all times. There are no perfect decisions. We are all doing our best for our kids. I try to follow my advice to my sons. They have been honor roll so far. They asked if we would be mad if they came home with a C or D. My response was as long as they try their best...truly their best then whatever grade they bring home is ok. All we can do is do our best and trust the outcome will be good. :ghug::ghug:
Whatever decision you guys make... There is no doubt you have put in your best effort.
Hope the radiologist reading all three results makes the correct path really clear.
 
Hi Tess,
Just got on the computer finally. I read over the report you posted and it definitely sounds like he does need to begin a treatment plan sooner rather then later. Sorry I know this is not what you were hoping for. :(
 
As Donald Rumfeld once said "There are known knowns. These are things we know that we know. There are known unknowns. That is to say, there are things that we know we don't know. But there are also unknown unknowns. There are things we don't know we don't know."

It's not easy for individuals with Crohn's, parents or doctors to make these decisions. Perhaps research will lead to a clearer understanding of which treatments are best for who, when and further quantify risks of different treatments and different degrees of inflammation. Currently, we all make treatment decisions the best we can on the basis of what is known today, knowing that a lot is unknown.
 
xmdmom, funny that you included that quote... a friend whom we saw last night has a little boy having GI issues, she's worried about crohns because his cousin has crohns and my husband said 'oh, she wants to talk to you tonight about his symptoms'. :eek: That made me really nervous, I'm happy to share what I know but I told my husband pretty much what you just quoted - there's LOTS that I don't know! I also always try to keep in mind that 'a little bit of knowledge can be a dangerous thing'... because, really, as much as I've learned, even in comparison to so many of you here, let alone a GI specializing in Crohns, I really have just a 'little bit of knowledge' in the grand scheme of things! :ybatty:

But, I want to thank everyone for your support and caring!!! It really means so much to have friends who wholeheartedly understand the complications, consequences, concerns and can give truly valuable insight and advice. Your friendship and advice are invaluable to me!!!!!!!! :ghug: :ghug:

In the interest of adding to my 'little bit of knowledge', just one question :) The 'fixation of the bowel loops' - is this permanent? I'm sure the degree of 'fixation' will factor into this question but would/could elimination of the inflammation cause the loops to become 'unglued' or, once fixated, do they remain this way even after inflammation is gone?

Also, Dusty and xmdmom questioned the 'upper left quadrant' - I hadn't mentioned it above but the MRE stated that lung bases, basilar plelural spaces, liver, gallbladder, spleen, pancreas, kidneys, adrenal glands, urinary bladder and stomach are all unremarkable. Are there any other organs up there?? I will ask the GI about this, however.


YES! A fireman's hat!
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:lol: You have a volunteer handy, I'm sure...???
 
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So, just dropped off the CD at the GIs office and we may not have his radiologist's review until the end of the year! :eek: Assistant said it might be sooner but year end is what she'd expect.

I've left a message for the GI to call but, if this is the case, then I think the timing has indirectly made the decision for me re the LDN. If I'm going to have to wait this long for a report and a commencement of treatment, then I may as well start Stephen on LDN. If it doesn't work, there won't be any benefit but there won't be any risk of undertreatment as there is no treatment except for the EN anyway. :yrolleyes:

I think this truly is one of the hardest parts for us... we want our babies treated immediately BUT... it just doesn't happen! :(
 
Tesscorm, I am so sorry to hear that it is going to take so long to get those films read by the radiologist. Did they explain why or is it just a common thing(sorry I'm not familiar with the way the insurance system works there). Am I right to assume that the dr. will look at the report for the most recent, at least, and call you?

I know the wait has to be so frustrating. I think the longest wait we had was for the FC test to come back and that was waiting on snail mail since it was done in lab. I don't think it was quite 1 week(dropped it off on 10/12 GI nurse called 10/17 with results) so I can imagine all this waiting between GI appts, reading discs, etc is about to push you over the edge!!

Do you think if I throw in some of those voodoo doll smileys we can somehow voodoo the radiologist into reading them earlier...:voodoo::voodoo::voodoo:..just in case! Sending hugs and support your way!:ghug::ghug:
 
The delays can be really brutal here in Canada. I'm sure it varies depending on the specialty, how critical, etc. but still... uggghhh!

When I dropped off the CD, I innocently asked 'When do you think I'll hear back from the Dr., a week? Two?' She looked a bit confused and then said it probably wouldn't before the end of the year... so I think it's a common thing. (Although, keep in mind this is a bit different from just reading an MRE performed at your lab - here I'm bringing in three different MRE films from different labs to be read by his radiographer). But, in any case, pathetic isn't it? If I'd waited for the MRE, we would have waited until February to DO the MRE and then have to wait to have all of them reviewed.

I'm going to wait until Wednesday to hear back from him and then call back... I want to start on the LDN now, there's no point waiting and I want to know his thoughts on, at least, the radiographer's report from the U.S. lab (ie on the fixation, etc.). I'm hoping this won't be a issue - he was very patient at answering my questions at the apptmt, suggested a telephone conversation and his ass't is as helpful as she can be, so... I'm hoping we can move it along to a degree.

I've also set up an appt with his GP to get his thoughts and discuss a 2nd opinion... apparently I've got time to spare anyway! :yfaint:

I'm a bit scared that nothing is being done again but, hopefully, the GI can alleviate some of that fear and I'll be happy to be able to start the LDN (perhaps, this is fate giving me this opportunity! :) ... said the bubble!)
 
It really sounds like you have a plan in mind and though I know the wait is frustrating it does seem as if the "wait" has at least help solidify a decision, so not all bad. If you decide on a second opinion, will that be another long wait? I think it is a great idea to bounce it all off of the GP, I always update C's GP and get his opinion on the treatment track and any concerns he would have. I can understand your fear with nothing being done as that would be my worry too but it is likely the GI's call on Wednesday will give you an even clearer picture and alleviate the anxiety of this wait. Keep us updated!!
 
Wow that is frustrating. It never ceases to amaze me that there must be so many kids sick and waiting for appointments that the GI's are so busy they can only give out appointments months in advance!!
Good luck getting the LDN sorted!
 
Wow! Yet again reading the posts here and there I am reminded to bring the biggest platter of Italian Christmas cookies to my daughter's GI. We honestly never wait for much of anything. E mails to the nurse are answered same day. Tests are scheduled and done at his hospital post haste.

Sorry for the delay but it does sound like it has given you the claer road to at least trying LDN while waiting. But hate to gunk up the works but....if MRE's are read in December and doc says whoa things look bad let's go MTX or Remicade are you then going to need another MRE to see how much LDN improved things before jumping on those treatments? Just asking because if you suspect so grab that February appointment.
 
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Hey Tess...:hug:

Ugh! So sorry to hear about the wait, that sucks! Booooooooo...:voodoo:

I do think you have taken the positives away from it though and I agree with your plan. :) See, told ya you were a wicked smart lady! :lol: You can have your bubble and LDN too!

I also think Crohnsinct is on the right track too. LDN = follow up MRE if and when a change of treatment is thrown into the ring. I wouldn't do it without one.

Good luck hun!

Dusty. xxx
 
Tesscorm said:
Also, Dusty and xmdmom questioned the 'upper left quadrant' - I hadn't mentioned it above but the MRE stated that lung bases, basilar plelural spaces, liver, gallbladder, spleen, pancreas, kidneys, adrenal glands, urinary bladder and stomach are all unremarkable. Are there any other organs up there?? I will ask the GI about this, however.
Click to expand...

Sorry, missed this Tess...no, there are no other organs up there. The transverse colon does run through that area but they have already stated that the colon is unremarkable.

Dusty. xxx
 
Agree with you re another MRE... I was thinking the same thing! :facepalm: Perhaps if the Cdn. system were more efficient, eliminating duplication of work (ie two MREs) would speed up the process! Because, Crohnsinct, Dusty, you're right... if we start LDN now, what happens in January 7 (our next apptmt) when he says the MREs show deterioration. Will things still be deteriorating after 6 weeks on LDN???? Ugghh!!! How absolutely frustrating and annoying!!! :voodoo: :voodoo: But, I had sort of mentioned this to him at our apptmt... if it took 4 months to get an MRE here, and if we started LDN, could we book it and have it already scheduled... so, I'm going to remind him this is the plan! But, still a very roundabout way of doing things!

And, Dusty, yes I was thinking the same thing re the transverse/descending colon but the MRE (don't have it in hand here so wording may be off but...) specifically says colon is clear (or unremarkable??) down to rectum. Don't know how things are all packed in there (ULQ) :lol: but I wonder if (back) muscle could be slightly inflamed??? He hasn't been complaining but back pain seems to be a vulnerable area for him??? Just a complete guess here as I don't even know back muscle is part of ULQ :)

:)
 
Uh Tess! I am so sorry about the wait! I am with you on trying the LDN since you have to wait anyway. We do want help immediately! If only..... I hope the read comes sooner! Be a squeaky wheel!
 
Ugh Tess, that is stinky about the wait but I am really glad you have decided to give the LDN a try. I am keeping my fingers triple crossed that it does wonders for him!
 
DOH! :facepalm::facepalm::facepalm: On my part that is! Sorry Tess. :redface:

There is a short segment jejunal wall thickening and increased enhancement in the left upper quadrant of the abdomen.

IMPRESSION: There is a short segment jejunal wall thickening with mild hyper enhancement consistent with Crohn's.
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The affected section of jejunum is sitting in the LUQ and that is what the increased enhancement is related to.

If you go to LDN whilst waiting I would book the MRE now.

Dusty. xxx
 
Thanks Dusty. I was actually wondering about the jejunum and duodenum but assumed they would have referred to them by name rather than by LUQ. :) This was actually one of the questions re the two previous MREs: his first (Nov 2011) mentioned some inflammation at the jejunum but his second (May 2012) did not. So, GI wasn't sure if that meant the inflammation had gone or just hadn't been mentioned in May.

Do you (or anyone) know re my question on fixated bowel loops - specifically, if this is permanent once fixated or if the fixation alleviates once inflammation lessens?

(And, boy, Murphy's law is in full swing around me... my father had to be admitted to hospital yesterday! :facepalm: Truly, doesn't it always seem that when it rains, it pours. Hoping all will be well once some treatment can be commenced! :yfaint:)

:ghug:
 
Hey Tess...did you have your surgery yet? Maybe you had it while I was away the past month or so but just wondering...
 
Do you (or anyone) know re my question on fixated bowel loops - specifically, if this is permanent once fixated or if the fixation alleviates once inflammation lessens?
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fixation (to me) would mean adhesions/scar tissue, and no adhesions/scar tissue do not heal themselves once inflammation lessons. :thumbdown:
 
No surgery for me yet... am seeing my specialist Nov. 23... so, that's pending TOO!! Ughh!
 
I'm so sorry to hear about your Dad Tess, I hope he is okay. :hug:

Sorry...again! I saw you had asked about fixation and then...boom...straight out of head! Maybe I should plug that big cavernous gap between my ears! :lol:

Unfortunately I am with T on this one Tess. The fact that the mobility of the loops has gone from restricted to fixated seems to indicate that they are adhered to each other. As T has said, once that adhesion takes place it the resolution of inflammation won't change it. :(

Dusty. xxx
 
Thanks Dusty. Left another message for GI... hope I hear from him TODAY!

Also, spoke with Skip re LDN and, have to admit, he did alleviate many of my worries. So, I'm really ready to move on with some treatment and booking that next MRE!!!

(Dad seems to be much better today... whew! He's diabetic, had an infection on his toe which seems to have spread to his foot and caused massive confusion/forgetfulness! Last night, didn't know his name, where he was, etc. But, today, he seems to be cognizant of everything, everyone! :) While we haven't spoken with the doctor, I'm thinking/hoping it must have been the infection for him to have improved so much overnight!)
 
Good luck with the GI! I hope he gets back to you today. :hug:

It does sound like your Dad was suffering delirium brought on by the infection. I hope you get news today and your Dad is well on the way to a speedy recovery!

Dusty. xxx
 
Tess,
Just now catching up. I hope your Dad is doing ok! I will keep him in my thoughts and prayers. I am so glad you spoke with Skip. He is just amazing. Now that we live in Florida we live around the corner from his pharmacy and I have popped in there several times to speak with him.
 
Not a lot to update re Stephen. Did have an apptmt with his GP yesterday, he's such a nice man! :thumright: He supported the idea of a second opinion and is sending referral, is re-running bloodwork as the GI had said the 'improvement' in his last labwork could have been a one-time thing, admitted he's not a GI so doesn't have the expertise but, didn't feel that the MRE showed immediate urgency although it did show continued inflammation. All in all, nothing new but supportive... :)

Havent' heard back from GI yet!!! Sent email Wednesday and Thursday! :ymad: And, I think their office is closed on Fridays??? So, am not expecting to hear from him until Monday at the earliest! :voodoo:

Unfortunately, things aren't well with my dad. He's been forgetful for the past year or so but with isolated things - ie forgetting restaurant names, 'numbers' were a problem, etc. but, was still dealing with all the bills, knew when he was being overcharged, driving to see friends all over the city (downtown, next township, etc.), etc. But, this infection has had a significant impact on his mental abilities (at times, over this week, hasn't known his name, where he was, etc.). Tests were run both for the infection and dementia and he's been diagnosed with dementia. While we know the dementia won't improve, they have said that once the infection is under control, he may go back to 'baseline', however, he may also be left with some lasting worsening of the dementia. And, then to top it all off... he was at his worst on Tuesday (mentally and infection-wise), was much better Wednesday, but almost back to Tuesday's condition yesterday. Then, at 6:30pm, they tell me mom 'oh, he's been discharged, you need to take him home now!' She hasn't even spoken to the doctor once! She's been asking over and over again to speak to the doctor but, I suppose, their paths just haven't crossed. My mom is at the hospital ALL the time, however, she has left a couple of times when my dad was sleeping, etc. - they were insinuating that the doctor has tried futilely to speak to her but she's never around! My mom freaked!!! Said he was in the same condition as when she brought him in, and actually worse than the previous day! Said he can't even get up, how is she supposed to take him home when she wasn't given any notice nor time to make any preparations at home (will need some help to 'physically' move him and, as she won't be able to leave him at all, needs to do shopping, etc.)

(Canada's healthcare does have its issues! :ymad) So, in the end, they agreed to keep him until this morning and a time was set for my mom and brother to meet with the doctor and discuss treatment of his foot (which, literally has 3 PURPLE toes, 2 when he went in on Tuesday!) My mom is very upset - with the treatment, with the responsibilities she'll have NOW and with what the future holds :( I know it'll seem better in a few days (tried to tell her :)), once things settle and, hopefully, my dad is a bit better mentally but... hard to accept when it's all happening.

So, has been a bit of a downpour here... :(
 
Awww...Tesscorm sorry to hear everything is up in the air with your Dad. I know it is so difficult to watch our parents go through illness and then to add doctor/healthcare system issues to that must be so frustrating!! I hope they are able to get the infection in your father's foot under control and that this will take care of some of the dementia he is exhibiting. Our neighbor had kidney issues and had been diagnosed with mild dementia, he ended up with an infection and there was delirium. It really panicked his family. After the infection was successfully treated he returned to his previous state, which did include the things you mentioned, forgetting street names or numbers small things, but was no worse.

Do I need to break out the stabbies for the GI? I think it is great that the GP is supportive and willing to send the referral for a second opinion!! Woohoo for the GP! I have everything crossed that the GI will call soon!!!

Sending support and hugs your way!!!
 
My my dear Grandparent BOTH have it. Yes BOTH. We found out 2 moths apart. My Grandparents our everything to us. We all took it hard. My Grandma tells other that she has to ask us not to call so much. I think that's to make the other people jealous! We moved them into a retirement village. They love it and so do we. I hope your dad feels better soon. You'll find with this disease it affects people different. My Grandma remember everything but numbers. My Grandpa is having a hard time walking. He said he doesn't remember to pick up his feet? PM anytime!:hug:
 
Tesscorm,
So sorry about your Dad, my dad also has mild dementia. I suspect it is from stroke he had several years ago. Everything seemed to be fine right after it, but it's the little things. Doesn't remember things, we have watched him drive right past the house to turn around up the street and come back. He was a postal worker here in town for years and knew every road in the city but now he gets confused about how to get places (luckily my mom pretty much drives him everywhere). My grandmother also has dementia, she just tells everyone she's crazy because she can't remember anything. My sister and I caught her flushing her pills down the toilet because she couldn't remember if she had taken them and it looked like she had too many.
Hope the infection gets under control and he is back to where he was.
 
So sorry you are having to worry about your dad so much. You would think that being in a hospital would be the best place to be looked after with the infection, etc, but it doesn't sound like he's had very good treatment. I hope the infection goes quickly so he can hopefully improve somewhat on the mental side of things. Hope you manage to get a second opinion GI soon as well. Thinking of you!
 
Thanks all! :ghug:

Jacqui, your description sounds pretty much like my dad, at least before this infection! Hopefully, it will get back to that! They're home now and my mom's pretty stressed with worry, and scheduling for home care and assessments, etc. Hopefully, it'll all settle down in a few days.

And, no call from GI today! :ymad: :voodoo: :ymad: Will call again on Monday! (GP couldn't believe it was going to take 6 weeks to get MRE review! He said it can be done in 10 minutes, can't understand why it takes the hospital WEEKS!... oh well, there are some things I know I can't change! :))
 
Oh my goodness Tess, that is a quick turnaround from hospital to home for your Dad, it must be a very stressful time for your Mum and all the family. :hug: I personally think it is too soon and if it is possible I would have the GP go and check on your Dad so he has a heads up as to his condition now should the need arise for him to be called on for your Dad over the next few days.

Demetia with delirium can be a very difficult time for families, trying to separate one from the other...any behaviour or changes that are new to your Dad now will very likely be the delirium and should disappear when the delirium is treated and cleared.

I'm so sorry to hear that the GI is dragging his tail! Grrrrrrrr. :voodoo: and the GP is spot on! 6 weeks to look at a scan...piffle!

Thinking of you and your family Tess. Take care hun...:heart:

Dusty. xxx
 
Oh, Tess. I am so sorry to hear about the downpour you have had to deal with. (((HUGS))) Hope things with your dad stabilize a bit.
I absolutely can not believe you need to wait for a month for your case to be reviewed. THey are done here same day. The only time there is a delay is if previous needs to be obtained from another facility for comparison. What if there were urgent results or significant findings? I am so sorry. Keep us posted...sending you loads of love!!
 
Just thought I'd update... I'm afraid to even ask if things can get worse!?! :(

Had to take my dad back to the hospital last night as he began to run a fever. Got there at at 11pm, more tests, they think now that's its not just cellulitis but that the infection is in his toe bone. We were up ALL night, not even a stretcher for my dad! At 9am, they finally moved us to another area in the emerg dept which at least has a stretcher bed in a private room. They admitted him again. They are hoping that with increased antibiotics and a combination of antibiotics, they can save his toe. But, if not, they will have to remove it. Dr was optimistic but only time will tell.

Then! As I'm pulling out of the hospital parking lot, my husband calls and he is inconsolable. He finally tells me that as he was walking our dog this morning, she had a heart attack and passed away. He didn't know if he should take her home for the kids to see her and say goodbye or take her straight to the clinic. As with all family pets, she's been such a huge part of our family, I told him to take her home so the kids had the option of saying goodbye if they wanted to. Needless to say, after being up all night, I didn't come home to a very happy place.

Please tell me this is it!!!!! :cry:
 

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