Stephen's update and transfer

Tesscorm · May 30, 2012

Thought I'd just start a new thread as this update really doesn't relate to my last thread, EN question.

Got a call from Stephen's new GI's office - first available apptmt is Oct. 17! Ugghh! Explained about Stephen's recent MRE and the continuing inflammation so he has been put on a cancellation list but, apparently, the GI only has 'clinic' hours on Mondays - this apptmt is already an exception. ...This is why I've been torn between a transfer to a GI at a large hospital with a large IBD clinic (with lots of resources, research and test facilities, up-to-date knowledge, support staff such as dietitiens, etc. but, maybe, everything EXCEPT time for patient apptmts!) or GI at a private clinic?!?!? Maybe it's not any easier to get apptmts with them either???

Nurse said I should tell his current GI that Stephen needs to remain under his care until the Fall - I'm certainly glad he's under someone's care and I do like his current GI but, really, I believe his care will be more 'reactive' rather than 'proactive' with his transfer imminent.

Thankfully, Stephen's feeling good so that's not a problem but I am concerned about the inflammation festering for another 5 months! But, I don't know what to do about it, if there's even much I can do???

I am going to get back to his current nurse (was waiting to see about this apptmt) and ask about some follow-up bloodwork and, even perhaps, another ultrasound before his next apptmt (mid-July) - to see if there's any change in the inflammation.

Nothing earth shattering; just a little venting :ymad:

S mom (???) - I think it was you who'd said your son's transfer would be in a year or so... thought this might be of interest to you, perhaps give you a heads up on any issues that we come up against.

crohnsinct · May 30, 2012

Been wondering how it was going. Good to hear that S is feeling good but yikes! October?! We have trouble waiting through a weekend for a call back October would drive me insane.

Sounds like a good plan to keep him with current GI...I hope they agree AND agree to the tests etc. I agree on the reactive comment but with inflammation a brewin I think reaction is probably warranted.

Hope it is smooth sailing from here on out.

Did he have his grad weekend yet? If so, how did it go? If not, when is it?

Johnnysmom · May 30, 2012

We are moving so we are transferring also. It has been somewhat difficult so far mostly because we have to switch insurance companies. We are moving to a medium size children's hospital to a very large one and so far I would say the smaller hospital is easier to deal with. But it does have great resources. I am hoping my son doesn't get lost in the transition. His 6mp levels have still not stabilized.

Good luck Tess. I hope Stephen can get an appointment from a cancellation.

Tiffany

Tesscorm · May 30, 2012

He had his grad weekend this past weekend

And we BOTH survived

He's a good kid - it was close to a 2 hour drive to where they were going (and all teens driving

) so he did let me know when they arrived and let me know he was still alive and well on Saturday! :heart:

Haven't specifically asked him how any GI issues are... hate to always be nagging, hovering, etc. but, he's looking good, eating well, etc. so I'm just going with what's right in front of me... not sure what I can do about the inflammation right now.

kimmidwife · May 30, 2012

Tess,
That is terrible that they are making him wait that long for an appt. Is there anywhere else he can go?

crohnsinct · May 30, 2012

Tesscorm said:
... not sure what I can do about the inflammation right now.

Probably nothing but I think you are on the right track with the request for additional testing during the waiting period. This way if it raises you can react.

What a good boy!

Here's hoping you get some answers in July.

Tesscorm · May 30, 2012

Tiffany,

Are you moving quite a distance? Will there be any overlap in care between the two GIs? That was one of the reasons I decided on our new GI - the two hospitals are across the street from one another, most/many patients at our current hospital are transferred to Stephen's new clinic and the two clinics have done some presentations together, etc. My impression is that they do 'work together' and I hoped that would eliminate the getting 'lost in the shuffle'. But, must admit, there was already some confusion as to the transfer - it got lost?!?!? :lol: Did you mean you are moving to or from a smaller hospital?

And re his 6mp levels - hope you can get that resolved - it's certainly less worrisome to transfer and start fresh when in a 'stable' condition.

Tesscorm · May 30, 2012

Kim,

I'm not sure that there would be much benefit in changing the transfer - I have no personal recommendations for any other GI and this is supposed to be a great facility. Asking to transfer somewhere else, may leave me in exactly the same situation without the 'great facility'. Before I start jumping around from one GI to another, I may as well see how this one goes and see if there's any reason to move.

I think I'll bump up his EN, not drastically, but cut out the 'two nights off' when it's possible, try to up his Krill oil (package says 2-3/day, he currently takes only 1 as he's noticed looser stools when he adds the 2nd pill - but, maybe his body just needs a few days to adjust) and look into some probiotics. Don't think any of these will be the 'cure' but may help to manage things for a while.

Am also going to speak re LDN AGAIN :lol:, a bit more persistantly now as I didn't realize I was going to have to wait 5 months to transfer! I'm going to ask his GI what harm can come from trying the LDN??? Even if it does nothing, Stephen's not any worse off as I'm not refusing another treatment to 'try' LDN. Don't know what else I can do now...

DustyKat · May 30, 2012

Hey Tess,

What I would do is stick with the plan you have now to see the GI across the road. In the interim I would speak with his current GI and explain the situation regarding the appointments and ask if he would continue to treat Stephen until October. Regardless of his approach he will at least have a GI, particularly (heaven forbid) should things worsen, and it will buy you time to keep seeking opinions and gathering information as to whether going public or private is the best approach. You could ring some private GI's surgeries and explain your son is moving from paediatric to adult care and just make a general enquiry as to how long it will take to get an appointment.

I know how you feel hun...:hug:...when Sarah packed her bags and left for Sydney she had to find a new GI. She would be attending the medical service on campus and the university has a very large teaching hospital attached to it. I rang the medical service and explained what she had and what she had been through and asked to speak to the doctor she would be assigned to. I then explained to him also and asked (read told him I expected :lol

that she be referred onto a gastroenterologist that either specialised or had an interest in Crohn's and one that they would send their own child to. After speaking with another member here in the local support group it turns out they did exactly what I asked, the GI she goes is fab! phew! Nothing like spying on your child through a forum! :shifty:

Dusty. xxx

Johnnysmom · May 30, 2012

Tess, We are moving from Grand Rapids Michigan to Cincinnati Ohio. Currently GR has 3 Pediatric G.I.'s and Cinci has 22. A few which only handle crohns patients. Our hospital is wonderful and easy to access. My sons G.I.has called me probably 7 times since Johnny was diagnosed in October. I am a little afriad Cincinnati Children's will be too big and might not be as easy to access I am hoping he will be stable before we transfer. We are at the lab getting 6mp levels as I am typing this. He had had to have his dose changed every month since starting for various issues. We have a month and a half before our move so hopefully he will be stable. They assure me he will be tracked and no one will drop the ball. His nurse is wonderful and I think his current doctor would see him no matter what. I would just drive him back to Michigan if I needed to. I am hoping I won't.

Sascot · May 31, 2012

Glad Stephen's feeling ok in himself! Good luck with all the transfer confusion. Hope GI is more likely to maybe try the LDN if you are with him for another 5 months!

Farmwife · May 31, 2012

I hope some thing work will for him, these next five months.
Keep up the good work mom. Your doing a great job.

Farmwife

S mom · May 31, 2012

Thanks for the interesting info about transferring to an adult GI, Tess. As usual, it appears that it is more diffiuclt than it should be!
We just saw our GI this week for a 3 month check-in appointment and they started the process of transferring to adult services as he just turned 17 a couple of months ago. They offered to refer to someone in the hospital or a private on closer to home but, like you,Tess, I decided to go with the hospital based one hoping that he would be more specialized to Crohns and be "in the loop" when it came to new research/treatments. I hope I have made the right decision! They are making the referral now so he can get an appointment around the time he's 18 next year. They did reassure me that he would remain with them until after he sees his new GI and return for one more visit after seeing the new guy just to make sure the transition is smooth.
These waiting lists continue to amaze me! Back in Feb. the GI referred him for an MRI - his appointment is in December... yikes!
I just keep my fingers crossed that he continues to feel well during this time so we can make the transition while things are good rather than while urgent decisions about treatment are being made that would be scary.
Tess, you sound awesome at keeping on top of things and advocating for your son. This next year will be a big one... it's a big one for all kids/parents but seems particularly big for these guys with IBD... changing Dr.'s, graduating, deciding what to do next... moving away possibly, starting university, increasing independence, hoping that they look after themselves.... ahhh... the list goes on. I just keep taking deep breaths and repeatin my mantra: one day at a time

Tesscorm · May 31, 2012

S mom,

It is a tumultous time for us parents! Stephen decided to go back to high school for one more year :banana: - he's going to do co-op so that he gets some real 'business-related' work experience - only gets paid in 'school credits', no money, but gets the job without having to find it himself! :lol: And the schools usually find a fairly decent employer, like a large bank, etc. He's hoping it may lead to a paid summer job next year and will look good on a resume...

His decision was certainly a relief for me... it allows him to move to the new GI without the additional upheaval of starting university, maybe being out of town, etc. You gotta be grateful for the small blessings!

But, terrible about the wait for the MRE!!! It took about 6 months for Stephen's first one! When Stephen tore a knee ligament, years ago, we took him to Buffalo for the scan! Got hurt in August and first avail apptmt here was mid November! We got the MRI booked in two days in Buffalo, I received a copy of the disk at the time and both his doctor and I received the radiologist's(?) report faxed the next day! He was done his treatment and physio by the time our hospital would have just done the MRI!

Dusty - spying, stalking... you do what you have to! :lol: There's a member here who attends a university in southern Ontario, I was hoping Stephen would've chosen that uni as one of his choices! I would've loved to have put in him in contact with a slightly older, more experienced Crohnie at his own school! My own personal spy! :lol: But, really, Sarah seems to be so mature and aware of what's good for her - that has to be reassuring for you! Stephen's so forgetful, so laid back, etc. I've often wondered if it's an EIM in his case! :rof:

S mom · May 31, 2012

Ya, I think that I would have that little guy doing the happy dance if my son decided to do a "victory lap" and take one more year of high school but I have a feeling that's not happening in my case... he's already talking about applying for engineering next year. I'm just working on keeping him fairly local so he can still have access to the same GI... and, to be honest, so I can try to keep tabs on him to make sure he's healthy (he keeps saying he wants to move to British Columbia for university... nah, I don't think so!). I don't know how you parents stay sane with teenagers moving off far away!

Tesscorm · May 31, 2012

S mom- you might be surprised

Stephen only decided to do his victory lap about a month ago - after uni applications sent, some offers received, etc. but I think the co-op really appealed to him plus I think he was surprised at how many of his friends have also chosen to wait a year!

So, this transfer is not going as smoothly as I'd hoped! Current nurse is saying hospital administration has become very strict about not keeping patients once they turn 18 (July) and is going to call the new clinic to ask to move up the date (she's even moving up his next follow-up apptmt because it falls 6 days after his birthday!). I've asked her what happens if they don't move up date - haven't heard back.

Also means won't do another ultrasound. Here I was worrying about the U.S. leaving kids untreated for months! I hope I don't find that Canada's no different! But, maybe jumping the gun here..., considering these are two major hospitals in Toronto, would be really sad to see them drop the ball here!

Probably won't hear back until Monday now (nurse isn't in on Fridays...)

Crohn's Mom · May 31, 2012

I wish Gab would have decided to take that "victory lap"! And I believe she feels the same. She actually said to me a few days after she came home for the summer that she wished she would have listened to me and her doctors when we tried to tell her it was ok to wait a bit. This last year, although she enjoyed most of it don't get me wrong, was extremely stressful on her. So, HOORAY for Stephen in his great decision ! :thumright::thumright:

I sure hope things get straightened out quickly with that transition !! Best of luck ! :ybiggrin:

DustyKat · Jun 1, 2012

I don't understand all this "victory lap" and "taking another year of high school"! I'm so confused! :lol:

I tell ya, it is so very reassuring that Sarah stepped up to the plate and took control and I do hear you about Stephen. I wondered if Matt would ever get through life without a personal assistant! but I have seen changes in him since he started uni full time. He is actually prioritising and sacrificing things, like his sport, that I wouldn't have dream't he would do in a million years! There is still hope Tess! :ybiggrin:

Dusty. xxx

Tesscorm · Jun 1, 2012

Dusty - great idea - personal assistant for Stephen! :lol:

We are allowed to return to Grade 12 (last year of high school) for a second run (victory lap

) (don't know if this is offered across all of Canada and the US). I'm not sure what the school board's intentions were when they implemented this but, for Stephen, it will allow him to 1) take a co-op course - school places him in a job in his area of interest and he gains the experience and two school credits; 2) repeating one of his math courses to obtain a higher mark and 3) take a course he'd wanted but had had to forego due to schedule restrictions this current year.

It also allows students, who change post secondary school choices/careers, to take courses/credits they may be missing.

Stephen still has his senior prom and grad this year but just returns to the same school in September. His plan is to return for only the first semester, Sept - January '13 and then work from February to July (hoping the co-op leads to this job) and start univ Sept '13.

It's a nice choice to have as it gives kids a bit more time to really consider what they'd like to do post secondary school and some just aren't ready to go away and need the extra year, etc.

The school counselor even suggested using the option as an opportunity to explore interests you won't necessarily have time to explore when 'real life' hits, ie photography, drama, etc. (Not sure the school board supports this view though :lol

.

But, I've heard that this is the last year that this choice will be offered at no cost - apparently, beginning Sept. 2014, only essential-type courses will be offered, they will not be in a 'high school' setting and there will be a cost to students.

Crohn's Mom · Jun 1, 2012

It's not offered here Tess

Our idea of Gab taking a "victory lap" would have been for her to stay home, take a few classes at the local state college (so she could keep her scholarships) and relax and heal and explore

Farmwife · Jun 1, 2012

In Michigan we have work release. I did it as a Senior. I was able to get to of school a few hours early and go to work. I got credits for it.
However, I had to find the job.
I also had to meet all the requirements as a Senior.
That's sound neat what you guys have.
Farmwife

crohnsinct · Jun 1, 2012

Last year? Darn! Just when I was getting set to move:smile:

Tesscorm · Jun 1, 2012

Crohnsinct, this program/option was implemented a few years ago. Up until 4 or 5 years ago, Ontario had a grade "13" (only province to do so), when they cancelled Grade 13, this offered this 'option' to return to grade 12. But, I have a feeling that the program is becoming too costly - perhaps too many students??? Especially if there are some that have thought the same as that one counselor - taking more 'interest' courses because they had the option to make up the necessary courses during a victory lap.

But, in any case, given the current economic environment, I thought the experience gained through co-op would be valuable, especially as the school already has the connections in place to offer the jobs (unlike Farmwife, we don't have to find the job). Students do have to meet all the regular requirements whether they be secondary school requirements, college, university, etc.

crohnsinct · Jun 1, 2012

Well gee...if too many are enrolling in the option maybe that is telling them something...it is needed or wanted.

I personally think we rush our children too much. Hurry up and read by 5...hurry up and graduate at 17/18 and figure out what you want to do with the rest of your life and get it right cuz you have to graduate college in 4 years.

There is a great movie documentary called "The Race to Nowhere".

My oldest just completed high school and that whole college search year was grueling. So competitive and they herd all the kids off to college like a one size fits all. If any kid says they are going military, or community college or heaven's forbid tech school the parents are pitied as having failed their kids.

Don't get me wriong I am not advocating a society of lazy bums but I think allowing exploration will lead to more fulfilled, mature and flexible thinkers in the end.

Good for S for being mature and open minded about his options. I hope it proves a great move for him!

But oh wait this is a Crohns forum right?

Tesscorm · Jun 1, 2012

I agree, I had encouraged my daughter to do a 'victory lap' but she was anxious and excited to move on and had no doubts as to her courses, etc. Each child is different

I don't know all the ins and outs of this 'victory lap' program but I'm guesing that when grade 13 was cancelled, to appease parents, etc. they implemented this option to repeat grade 12. But, you're right... many kids are pushed along when they aren't ready, etc. so perhaps parents are encouraging more to 'wait' a year. Plus, with today's economy, there's no big rush to get into that job market

I know each student needs the principal's approval to return but I don't know what conditions must be met??? I've never met anyone who wasn't able to return. I think apprx. 6 or 7 of Stephen's friends are returning...

DustyKat · Jun 1, 2012

Thanks for the explanation Tess.

We don't have a program like that as such. A lot of kids take a gap year before starting uni and you can re-sit your Higher School Certificate to gain better marks if that is what you want to do, I don't think there is a cost to re enrol at a public school?? I don't know anyone that has done it immediately after finishing Year 12 though, only older people going back to school to gain their Higher School Certificate.

We also have TAFE colleges here that offer courses for all ages but many kids do courses concurrently with their school program, approved by the Board of Studies, and they can gain certificate qualifications in things like hospitality, tourism etc by the time they leave school.

Dusty.

willsmom · Jun 4, 2012

Tesscorm thanks for sharing your experience on transitioning to adult care - while the transition is a few years away for us, I appreciate learning from your experience and am likely to be dealing with the same hospitals.

To add to your interesting side discussion on the victory lap, if I recall, it arose in part because in the year the govt killed grade 13 this caused excessive competition for entry to post-secondary school (both university and college) due to having a fixed number of spots available and twice the applicants...the tradition has lived on for those wanting to boost marks or get experience get into post secondary.

crohnsinct · Jun 5, 2012

Don't be jealous now girls but if O goes to college her ped GI will keep her as a patient until she graduates and falls off our insurance. Guess it doesn't really matter though...just delays the inevitable. It is kinda weird though in the docs infusion center when these big strapping young men with beards walk in for their treatment. I was wondering about the college search and asked one of the girls how she went about it. She said our doc finds a GI near the school, hospital and infusion center...told you he is a control freak..but I rather like our control freak!

That explanation of how the victory lap makes total sense...logistics..

Tesscorm · Jun 5, 2012

Wills mom,

Yes, you're right about that issue re univ space the year grade 13 was eliminated. I'd forgotten about that...

Don't really have any good news re Stephen's transfer... the hospital (current GI) can NOT keep him once he turns 18 (to the day!) His next apptmt had been scheduled for 6 days after his birthday and they've had to move it up to the day before! And, a friend whose daughter was also in the hospital last summer due to Crohns told me there was another girl in the hospital, quite sick and had a resection and was transferred immediately after (days, a week???) because she had to be moved before her 18th birthday. So, if this poor girl had to be transferred under those conditions, I highly doubt an exception can be made for Stephen.

Stephen's nurse was going to see if she could have the apptmt at the new GI moved up but haven't heard back. I think they possibly dropped the ball a bit here... I would think that, if so many of their patients are transferred to the same clinic, they would be more aware of wait times for apptmts with the new GI??? In which case, they should have started the transfer sooner... (i.e., S mom said her son's transfer is still a year out and they have already started the process).

I don't know what I can do?!? Another friend, who works for a specialist at another hospital (not GI, unfortunately!) said that if an issue came up before October, I should consider the 'upcoming' GI as Stephen's current GI and take Stephen to that hospital's emergency for care. But, my concern isn't so much that an 'emergency' will happen... it's that the inflammation has been there since the fall (actually earlier as he was diagnosed in May), will likely continue to be there until Oct and then, before the new GI decides on treatment, we will have to wait for further testing which, if that includes another MRE, could takes months AGAIN! But, like I said... I really am at a loss as to what to do??? Hopefully, his current nurse can get the apptmt moved up or Stephen will get an earlier apptmt thru a cancellation.

I'll speak with his current GI at his next/last apptmt (July 4) and see what he says...

Catherine · Jun 5, 2012

Tess

Your transfer issues make me feel lucky. As Sarah was already 16 when got our referral letter, she when straight to an adult gi.

Tesscorm · Jun 5, 2012

Unfortunately, sometimes you have to learn on the fly... If I'd ever thought this was an issue, I would have asked to start the transfer earlier; I thought they were covered by this hospital throughout their '18th year' so,in the back of my mind, I thought we had lots of time... :mad2:

DustyKat · Jun 5, 2012

I'm so sorry to hear that the system is so inflexible Tess.

:voodoo:

Sarah's paediatrician will happily see his patients up to 25 and when it came to seeing a GI I decided that being 14 she might as well go straight to an adult GI. He had no issue with accepting her.

Dusty. xxx

Tesscorm · Jun 5, 2012

I don't believe it is the 'entire' system. I know that there are pediatricians who will continue seeing their patients until their early 20s but, I think this is specific to this hospital. I'm guessing there are a number of factors - it is a 'childrens' hospital and the limited available space at hospitals is often in the headlines here, leading to pressures to free up space to treat 'children' as is their mandate, perhaps our provincial healthcare funding prohibits the hospital from treating 18+ patients???

crohnsinct · Jun 5, 2012

Oh Tess I am so sorry for all this frustration and the worry over possible untreated inflammation. I am hoping for a cancellation or maybe when you see his ped GI he will get on the horn to the new office and free up some time for him.

Finger and toes crossed!

willsmom · Jun 5, 2012

Tess, I feel for you...I've not had the best experience where referrals to other clinics are concerned but I did find it helped to stay on top of the referring nurse, do bring it up with his GI at the next appointment and maybe even go so far as to get your GP involved to expedite and ensure that Stephen is not left in the lurch without the proper care.

Sascot · Jun 5, 2012

After reading your posts about the stress of transferring to adult GI I thought I would ask about what happens here. Apparently they move over at age 16 which I thought was quite young, and for about a year before that they start doing a joint clinic with the paed GI and the adult GI. The nurse says they start taking the kids in by themselves at that point so they know what to expect - however I was not happy with that. Even as an adult I like to have someone else there to pick up things I maybe missed. Oh well, hope you get everything sorted soon.

Tesscorm · Jun 5, 2012

Oh... just to complicate things MORE... Because, WTH, what's life without complications! :duh:

We're trying to find Stephen a new GP :runaway: His current one only works part time now and trying to get in to see her sometimes takes a couple of weeks!:ybatty: But, I've been waiting to see where Stephen was going to go to university (out of town, in the city, etc.) - it's hard enough trying to get a new doctor here ONCE, I didn't want to try to do it twice! Now that he's decided he's not going anywhere, I'm hoping a 'doctor' friend can get him moved to his own son's doctor - just waiting to hear back...

So, isn't life special... Stephen may not have a GI and, at the same time, doesn't even have a readily available GP!

My fallback is that my own GP is amazing and, if I absolutely have to, I will ask her to be Stephen's GP - haven't so far only because she is downtown (near my work), would be very inconvenient as Stephen's never downtown if she was his permanent GP (for everyday aches/pains). I'm trying to get someone closer to home for Stephen.

So, at this point... I'm just going day by day:ylol2:... As much as I am a control freak, it seems I have NOTHING in my control at this point! :ybatty: Talk about stress! :rof:

Thank god Stephen's, at least, feeling well!!!

DustyKat · Jun 6, 2012

Yes Tess! Thank God!

Hoping more than anything that Stephen stays well and the doctor dance isn't toooooooo stressful!

Good luck hun...:hug:

Dusty. xxx

S mom · Jun 6, 2012

Yes, thank heavens he's cruising along feeling ok!! It does give you a little space to take a breath and try to work within the system - as frustrating as that can be.
I laughed out loud at the "control freak" comment... I often think that when you have kids you become part of some master plan to make you live day to day and relinquish control... just when you think you have it all figured out they throw a monkey wrench into the works!
Hey, Tess, did you know that as of Sept '13, the current budget does not allow a "victory lap"? See... it's my new mantra... one day at a time :lol2:

Tesscorm · Jun 6, 2012

OMG, please don't tell me that he will now have a problem with school next year! The deadlines to accept university offers has passed!!! OMG, I really don't think I could handle another wrench in our lives now! I just put a call in to his school counsellor...

S mom · Jun 6, 2012

No, he won't have a problem for next year - his year is the last one to be allowed to do it (Sept 12)... my son will be caught for the year after, however.

Tesscorm · Jun 6, 2012

OMG :lol: silly me, you did say Sept. '13... I just had a total panic attack! I'm obviously teetering a wee bit too close to the edge! :rof:

But, I'm sorry your son won't have the opportunity. I had heard that the program would be discontinued after this year but, perhaps, not in its 'entirety'... my understanding is that the school board was still going to offer the essential courses (i.e the maths, sciences, english, etc. - no drama, no photography

), that the classes will be held in a separate location (perhaps in an office building or the school board's offices) and that there would be some charge.... Since I have a call in to the counselor already :blush:, I will ask him about plans for Sept. 13 and let you know

Tesscorm · Jun 6, 2012

S mom, just spoke with counselor but he had no info regarding the victory lap for Sept 2013 - only knew that they are to continue accepting students for this coming Sept but hadn't heard of any news, neither continuation nor cancellation of the program for Sept. 2013. But, thanks for your post! By calling, we determined that Stephen had not submitted the form specifying his area of interest for co-op! :facepalm:

(See, Dusty, Stephen DOES have a personal assistant - ME! :yrolleyes

kimmidwife · Jun 6, 2012

Hi Tess,
I just wanted to say I am sorry you are stressed out. I know how it goes. Life is never easy! Hopefully you will get it all figured out quickly. Stephen is lucky to have such a great Mom!

Tesscorm · Jun 7, 2012

Thanks Kim,

It does seem that when it rains, it pours!

But, I don't think I will have a problem transferring him to the new GP (hopefully, not speaking too soon! Didn't think the GI transfer was going to be a problem either! :lol

- and that will be a relief, knowing that he will have a GP close by and where I don't have to wait two weeks for an apptmt.

We all just do what we gotta do, right? :ghug:

Sascot · Jun 7, 2012

Gee, it does really seem like one thing after another! Think we could give some people a run for their money on multi-tasking. Good luck with well - everything!:smile:

Tesscorm · Jun 7, 2012

:lol: Gosh, don't we all know about multi-tasking?!?!? :runaway:

Apptmt with new GP set for next Thurs! Just a 'meet and greet' apptmt to get Stephen's background, info, etc. :banana:

And, meant to respond to your earlier post... that's great that the ped and adult GI care overlap for a year! I'm jealous!

And.... sending him for apptmts on his own??? Oh, sure, like I would let that happen! :eek2: But, I have had to deal with this with my daughter, to a degree... as she's just turned 19 - she must be the one to call and request any test results, schedule apptmts, etc. - wow, let's make our lives even more complicated... instead of just getting thru a nurse to get to the doctor, now I've got a teenager ahead of the nurse!:ybatty: :lol: BUT, what I've done for years with both kids at doctor's apptmts is I go in, discuss results/issues, ask my questions, etc. and then leave the office so Stephen or Emily can have privacy to discuss what they don't want me to know

I've never had a problem doing it this way...

Mom2oneboy · Jun 7, 2012

I'm just now catching up on you and Stephen and wow, who knew it would be so complicated? After so many years of being with the pedi GI and developing a trusting relationship, I can't imagine having to start all over with that. Ugh! Just one more reason I don't want my baby to grow up

You do such an amazing job of staying on top of all that. Stephen is so lucky to have you as his mother!!

crohnsinct · Jun 7, 2012

Kids at docs on their own...YIKES! You are making me laugh and cry. My oldest is turning 18 in July...didn't even think of that. Yeah sure she is examined without me but I always get first and last word. Soon I am not "entitled" to anything...need to know basis. ugh!

I am so glad you are going to have a medical professional in your corner...well besides us here...this way if anything transpires with S you can get on it right away. Crossing my fingers that the next 5 months are uneventful!

Tesscorm · Jun 7, 2012

OMG, I cannot even imagine the panic I would be in knowing Stephen will have no GI for a few months if I didn't have all of you to help me along! :ghug:

I smiled at farmwife's comment... "We decided not to tell the Doc what we thought it could be. We were just curious if he would put that together also." :tongue: I will never forget when the 'on call' GI asked me 'if I was in a related field' after I questioned him on LDN, calprotectin, lectoferrin, etc. :rof: What I know, I know from all of you! :hug:

Catherine · Jun 7, 2012

My 16 year old had to sign a letter to allow me access to her records with GP.
That a story in itself.

Her GI doesnot required one as I go to all the appointments. Sarah doesnot ask any questions.

S mom · Jun 8, 2012

Our GI clinic told us at the last appointment that my son would be expected come in on his own next time in preparation for his transfer to adult services and then we could come in at the end of the appointment to ask questions etc... I can't imagine that he would ask any questions on his own either!
I've been trying really hard to slowly let go, however, knowing that he will eventually have to deal with this on his own. He now does all his own MTX injections and lets me know when we need to renew the prescription or by more folic acid. He books his own bloodwork and goes to these on his own... but it still seems to be a big leap to actually attending Dr's appointments totally on his own... I think I will be "hoverin"g in that area for a while longer!! so many "huge" decisions - I would want another set of ears if it were me and I'm supposedly an adult!

Tesscorm · Jun 8, 2012

I agree that GI apptmts need a second set of 'ears'. Adult or not, it helps to have someone else to remember questions and the answers. I may be a bit guilty of micro-managing Stephen re his Crohns. Partly concern that if not manage properly, the condition could worsen (ie researching, etc.) and, partly, because I'm sorry that he must have this responsibility - I can't take the disease from him but I can, at least, cover the 'workload' (prescriptions, making formula, etc.).

but, I think that when the time comes for university/going away, they will step up to the plate (maybe just a few stumbles

). I think the example we set by being diligent about apptmts, prescriptions, etc. will rub off on them. I've been with Stephen at restaurants where he's asked about 'seeds/nuts' and changed his order because of it, he has said (without my prompting) that he's going to eat more of the foods that are known to be anti-inflammatory (although, more often than not, his 'pickiness' seems to win this struggle!

). And I take comfort in hearing about Dusty's and Crohn's Mom's kids who have gone off to university and taken responsibility for their illness (and lots of other 'young' members here...).

Uggh, hard enough to let them grow up but having an illness just makes it harder.

crohnsinct · Jun 8, 2012

Tesscorm said:
I can't take the disease from him but I can, at least, cover the 'workload' (prescriptions, making formula, etc.).

I love this! How beautiful. The gift of a loving mother. You have done such a great job, I am willing to bet he welcomes your input.

DustyKat · Jun 8, 2012

I know when I go to appointments with Matt he will sit back and let me do all the talking. Even when the doctor speaks directly to him he will turn and look at me and expect me to answer like I am sort of medium that is going to channel him! When he had his pre op appointments he only asked one question the whole day!

Having said all that I do know deep down that if it were left up to him he would take over, it's just easier if Mum peels the grapes for now. :lol: You are setting an example Tess, you are doing what you do everyday without realising it, teaching and preparing him for life outside the nest. Well done!

Dusty. xxx

Tesscorm · Jun 8, 2012

DustyKat said:
Even when the doctor speaks directly to him he will turn and look at me and expect me to answer like I am sort of medium that is going to channel him!

Too funny!!! :rof: I can see it... (we must be channelling....:lol

Doctor: How are you feeling?

Any kid, looking at mom: I'm not sure... Mom?

I've been there! :lol:

crohnsinct · Jun 8, 2012

Some sort of medium...LMAO! Good then it isn't abnormal that O talks up a storm in the hour car ride to the doc and becomes mute as we cross the threshold! Although I will say she rather liked the derm yesterday...tall, dark, handsome, young fellow...She told him to call her Livy?! She sure talked to him! O.K. it was about skin and not her butt and poo but still....

Oh and IF they do say anything it is usually"fine"

Tesscorm · Jun 8, 2012

:lol: I guess they're all the same...! :heart:

Give her a couple more years... she'll be happy to be talking about her 'booty' to some tall, dark and handsome doctor!

crohnsinct · Jun 8, 2012

LMAO:rof:

crohnsinct · Jun 14, 2012

Hey! Stephen has his appointment with the new GP today...right? Good luck! Let us know how it goes...did you get to go in?:shifty:

jmckinley · Jun 14, 2012

Tiffany,

I hope the transition to Cincinnatti Children's goes smoothly. I saw that they are #4 on the list of best hospitals for GI. Do you know who your Dr. will be yet? R's first Dr. moved to Cincinnatti Children's a year and a half ago. He is in the IBD clinic there.

Tesscorm · Jun 15, 2012

Apptmt went really well!!! YAY!!!! I really liked the dr! Apptmt wasn't meant to be more than a 'meet and greet' and I thot he was great and so did Stephen! We went thru Stephen's crohns history and he asked lots of questions, asked if we cud arrange for all past and future results to be sent to him, etc. (Mom bonded here :blush

He has a son, same age as Stephen, who also plays hockey so they got into 'hockey talk' and I think Stephen 'bonded'. :lol: anyway, a big relief knowing that Stephen has a good GP now!

(Am away for a couple of days

. So may not be around much for a few days. :ghug

Mom2oneboy · Jun 15, 2012

Yay!!! Sounds great and I know that has to be a huge relief for you!!

DustyKat · Jun 15, 2012

Woohoo! And all that bonding! Oh happy days!

ika:

ika:

:mademyday:
Dusty. xxx

crohnsinct · Jun 15, 2012

YAY! A medical professional in your corner! Enjoy the next few days...we will miss you!

Johnnysmom · Jun 16, 2012

Jmckinly, We are seeing Dr. Saeed. He apparently only treats crohns patients. Our G.I. in grand rapids recommended him. We will meet him in August and I am kind of nervous because I love our current doctor. Did you have a good experience with your Dr?

my little penguin · Jun 16, 2012

woo hoo for a good new doc

izzi'smom · Jun 18, 2012

so happy to hear it went well...yay for you!!!

Tesscorm · Jun 18, 2012

Thanks everyone!

Really do feel like a weight has been lifted! Woohoo! :lol:

One down, one to go... OMG, could you imagine if we're just as happy with his new GI?!?! :banana: I'd post my own picture of me doing the happy dance! :lol:

Sascot · Jun 18, 2012

That's great news!! Truly hope he gets a good GI as well - I look forward to seeing your own happy dance :lol:

Tesscorm · Jul 4, 2012

So... Stephen's last apptmt with his current GI...

GIs thoughts are that Stephen's crohns is still active (or becoming more active) as his inflammation markers have been creeping upwards (although not steadily - sometimes they drop...) and the last MRE continued to show inflammation.

(The actual MRE report says "extensive inflammatory changes in the distal 20-30 cm of ileal loops in the form of significant mural thickening, mucosal irregularity/ulceration, stranding of surrounding fat plans and vascular engorgement. Mild luminal narrowing of the distal ileum. No significant changes since Nov. 2011" - perhaps this sounds worse than it is but certainly does not seem to fit with the clinic nurse's comment that the results were 'mild inflammation at the TI'?!?

In any case, it is what it is... perhaps it 'sounds' bad??? Where, oh where is my :sun

So, going forward... current GI will, in fact, continue to keep Stephen as an out-patient for 'maintenance' until October (apptmt with new GI). He would prefer to not begin a new treatment as Stephen will be transferring so soon but, if results from today's tests showing worsening levels, he is recommending methotrexate. If results are the same or better, we continue with EN for now. If situation deteriorates significantly, he will either get apptmt with new GI moved up or will transfer Stephen to the new hospital through the ER department (I suppose, 'fast tracking').

He says Stephen is in 'clinical remission' but not (is the term???) biochemical remission. Said Stephen responded very well to EN, however, it is apparent that EN is not 'healing', just keeping things 'okay'...

Will NOT prescribe LDN! :thumbdown: He did say the IBD team is looking at LDN, that it is currently a hot topic but they are not ready to prescribe yet. :voodoo: No matter what I said, he was adamant. Again, suggested that the adult GI/team may be further ahead in their acceptance of LDN as there are more 'adult' studies to refer to...

So, we wait for the results... and I pray we can hold off on the metho until I can try to convince new GI for LDN.

Tomorrow's update... Emily's rheumi apptmt...

(and stay tuned... did I mention she is also seeing a psychologist next week because she feels she needs help 'focusing' at school??? Hmmm... hard to stay focused in accounting class:ywow: Try turning off the blackberry!:ybatty: A parent needs to attend... (who needs to work? :rof

Stephen's GI asked what his new GP's name was and I went totally blank... he looked at me like I was some ditzy mother! :lol: Sure, I'd like to see him try to keep track of a current GI, new GI, rheumi, psychologist, old GP, new GP!

Catherine · Jul 4, 2012

Glad to it's not only me who forget the specialist names. I have the same problem with subject teacher names, last parent teacher night I had 18 5 minutes interviews.

Twiggy930 · Jul 5, 2012

Tesscorm said:
Stephen's GI asked what his new GP's name was and I went totally blank... he looked at me like I was some ditzy mother! :lol:

:ylol2: I had a similar experience at our appointment with Rheumatology the other week. I totally blanked out on the name for Pentasa. I knew it was related to sulfasalazine but I could not for the life of me come up with the name PENTASA!!! Doc just looked at me like I was some kind of idiot who couldn't name all of her son's past meds. :ywow:

Sascot · Jul 5, 2012

Think you're going to have to start a little filing system to bring with you - keep the names of all the specialists straight :ybiggrin:
Wonder why docs are so reluctant to try LDN, surely anything with fewer side effects is worth a shot?? Good luck with the Methotrexate if he starts.
Have to say that is the first time I've ever heard a kid say they want to "focus at school" :lol2:

crohnsinct · Jul 5, 2012

Well all in all sounds good...you get to keep old GI in your corner until new, you have a new GP both of you like and a plan should things get worse.

I also don't get the reluctance to try LDN...if he is in clinical remission and "o,k," right now why not give it a shot? I mean I can understand a kid in horrible condition and them not wanting to waste time "trying" something and wanting to get it under control fast but if you aren't doing anything else right now why not?

Oh yeah! Have totally blanked out on specialists and medication names before..three kids, two dogs, me, hubby, hard to keep everyone's facts straight. Hell, I forget to ask at the end of appointments when I should make my follow up appointment for and end up chasing down a date.:facepalm:

Good luck at the rheumi today. I can't remember but is it you who has a child with dyslexia? If so, is it Emily? My youngest has severe memory dyslexia and the neuro psychologist tells us that at some point trouble concentrating pops up as a result of the frustration with the dyslexia. So far so good for us but she is only 8.

And what teenager can stay focused in accounting class anyway :boring:

Tesscorm · Jul 5, 2012

So, all good at rheumi! Her ANA was normal, all tests normal, even her iron levels were good!!! WHEW!! Her pinky still hurts periodically (rheumi thinks from a past injury) but, just a periodically sore pinky I can, with relief, say 'live with it'! :lol:

Dyslexia - no. Lack of focus? let's see... math is her weakest area but she chose to take Finance, she's a very 'sociable', chatty person, constant Blackberry pinging, upcoming 'weekend' plans, etc., etc.... combine them all and, really, you have no focus in accounting or statistics!?! :facepalm: But, seriously, she is easily distracted and gets very stressed for tests (sweating, itching, headaches, etc.), so, as she recognizes the need for some help in dealing with this, I think it's great that she's looked for the help.

Crohnsinct - totally agree re the LDN. So frustrating!!! And I did say exactly as you mentioned, that THIS is a good time to try! I told him, we're not in a situation where I'm refusing treatment to try something 'different'!!! Also, put him on LDN now during this 'wait' period so that when we get to the new GI, we'll know if the LDN is working or not... Ugghhh!!! I am a bit disheartened to put Stephen on metho, like everyone else when facing this :ghug:, so... if that is what we are facing , perhaps I will get a second opinion now (even before new GI)... forgot to ask yesterday but, for all the same reasons as LDN, why not try Pentasa??? Why jump straight to metho?

Also, picked up his medical records (seriously, like 200 pages!!! WTH!?!) and am really, really confused... Only had a chance to skim through them BUT, I think, his scopes (May 2011) showed only one granuloma in his stomach??? His stomach has never even been mentioned??? Also, inflammation in his entire colon, especially in his descending colon (at diagnosis, not now)... So confused!!! Why would EN have been offered at that time, based on scopes showing inflammation in the colon, with only assumptions of small bowel involvement based on ultrasound images (first MRE wasn't until November). I'm glad of the EN but, just confusing as I thought EN isn't generally thought to treat crohns in the colon as successfully??? I've got to go through all of it again with more time... But, huge mistake not getting all the test results in hand immediately so that I could have asked these questions at the time! Won't make the same mistake going forward...

But, one step at a time...

crohnsinct · Jul 5, 2012

So glad the rheumy appointment went well.

Oh boy Tesscorm you are really making me feel woefully inadequate as an IBD mom. As you know we get info on a need to know basis. We started this journey before I found you guys so was fine getting the bits and drabs from doc but now I want the whole enchilada and don't know how to change my approach. I have so many questions...not that it will change things at all but he said Crohns based on colonoscopy minutes after he walked out of procedure...do biopsy results confirm that? Then at a later date said rectal and stomach inflammation was present...does that mean simple inflammation or was there disease? He said no small intestine involvement but he only got a small peak with colonoscopy and endoscopy so could there be? I just have this nagging question as to whether or not it could be colitis as that would change how we proceed in the future.

Oh well, doesn't matter she is fine and responded to Remi and EN (with almost all disease being in the colon!)...maybe I will hit him with my new personality in August...maybe he will forget the quiet mild mannered city girl.

Tesscorm · Jul 5, 2012

crohnsinct said:
Oh boy Tesscorm you are really making me feel woefully inadequate as an IBD mom.

OMG, are you kidding!? I constantly feel like I'm 10 steps BEHIND... my 'crohns' life feels like... 'shoulda, coulda, ...DIDN'T'

I feel exactly the same as you...

They did scope and came out and said 'confirmed crohns'. Uhh... okay??
Remember her saying 'certain its not UC, it's crohns'. Uhh... okay??
He can eat what he wants today, tomorrow and for the next six weeks it's no food! Uhh... okay???
We don't know how it progresses in the future. Uhh... okay???
We don't know for certain if EN will work. Uhh... okay???

What they said: Granulomas, terminal ileum, CRP, colon, ulcerations, strictures, stranding, sed rate, inflammatory markers...

What I heard: aljdlkf joicv klafjei xciovj alkerj elijzic vjaem. xjcio pierje. Any questions? :lol:

But, I am definitely going to say to the new GI that I want to know all information, not on a 'need to know basis'. New GI is my opportunity to start fresh

But, to be fair, I (we) knew so little at diagnosis, if they had started giving too much detail, it would have been even more overwhelming. Realistically, I doubt I would have been able to add much of value to the decisions being made. Thankfully, they took control when needed. Now that we're all more aware, more knowledgeable, I (we) can and should play a bigger role in the decisions.

crohnsinct · Jul 5, 2012

What I heard...LMAO

Tesscorm;469984 But said:
Thanks I needed that. Makes sense. Just hope the doc is ready for me in August. Haha I wonder if they sit around taking bets on how long it will take each of us to come out of our new dx fog...as I have said to someone else also, I also wonder if they take bets on how long it will take each of us to come around and accept the drugs being recommended...I can see it now in the break room..throwing down the challenge, doc A "she didn't go for it" doc B "let me try, I'll break her"

Tesscorm · Jul 5, 2012

LMAO... every job has it's own humour! You may not be far off!

actually, "dx fog" is a really good description! I guess, to a point, when we accept the meds, is when we actually do come out of the fog.

I guess I'm just not there yet.

Sad, but when I was reading the biopsy report last night and reading 'no granulomas found' there was still that tiny voice saying "maybe they made a mistake!!" So, in my case, I guess that fog is still swirling around (and, when it's not, then I'm blinded by my bright sunny world! :lol

:ybatty:

Catherine · Jul 5, 2012

I suppose my dream world end this week too. You know the first treatment they tried worked so well. Anemia gone after only 3 months and now it back along with the doubts

my little penguin · Jul 5, 2012

crohninst-
Count me in the - I had no clue at time of dx club.
YOu don't need to ask the doc for the results-
Just go to medical records -fillout a form and instantly you have all the paper work.
BE prepared some charge a fee per page for personal use but not for continuing care (i.e. another opinion)

crohnsinct · Jul 5, 2012

Tesscorm said:
New GI is my opportunity to start fresh

Haha and btw that is what we tell out third child...we made all our mistakes with the other two and she is our chance to do it right

Haha we spaced our kids far apart...G is 9 years older and O is 4 years older than her and she gets frustrated they get to do everything so much sooner than her..we also tell her not to worry she is so lucky because when O goes to college and she starts high school we will have no other children and we can turn all our attention and focus on her and everything she is doing :biggrin:

DustyKat · Jul 6, 2012

Woohoo! Fab news about your girl Tess!! I am so deliriously happy for you!!! :ybiggrin::ybiggrin::ybiggrin::ybiggrin::ybiggrin: I hope the psychologist is able to help. Keep us posted with how she getting on!

Good lord, if I didn't have to work I wouldn't have so much catching up to do! :lol: It's good to hear that there are solid plans in place for the hand over to the new GI. Hmmm, well it does very much sound like Stephen is in a holding pattern at the moment with his disease. I hope the EN is able to keep things contained until the change over. EN can be just as useful with large bowel CD, I think the jury is still out when it comes to UC though.

As to the 5ASA's...I can see two reasons why they might be doubtful about it. Firstly they may feel the disease present is beyond what the 5ASA's would be able to treat and in going down that track there is a greater risk of the disease progressing. Secondly, I know there are those here that have had success with the 5ASA's and mild small bowel disease but there is some doubt about just how effective they are with small bowel disease and to be honest Stephen's disease doesn't sound mild. I know they are listed as being for mild to moderate disease but in the small bowel I feel if they were going to work it would likely be against mild disease only. Of course that is only opinion!

Now what did I know about Crohn's when Sarah was diagnosed? So bloody much that you could fit on the back of a postage stamp! Sheesh that's probably being overly generous, let's downgrade that to the head of a pin! :lol:

Dusty. xxx

Tesscorm · Jul 9, 2012

Thanks Dusty!

I'm with you re the inconvenience of work interfering with my time here!!! It's been so hectic for me lately, I've only been managing to jump in and out!! :ymad:

I'm sure you're correct re the Pentasa, etc. Stephen's GI has said from the beginning, he didn't have a lot of faith in the 5-asa's but, I suppose, in one of my 'coulda' moments - perhaps we could've tried them at the very beginning together with the EN??? Oh well, perhaps too late or perhaps never an appropriate treatment for Stephen??...

!!Huge!! relief that his GI will continue to maintain him shud the need arise between and October - while Stephen's well now, that was a big worry for me, especially being told of the inflammation two weeks before they were signing him off!!! God, what a way to panic a parent! :lol:

And, forgot to mention, there was another good sign at his apptmt - since April, he grew 1/2 inch and gained approx. 5+ lbs, heaviest he's ever been! He's usually between 156-160lbs, now 164! (I'm certain due to his hockey ending in April...) At least I know, even with the inflammation, he is still absorbing nutrients, etc.

S mom · Jul 9, 2012

That's fantastic to hear. Tess... both that your daughter's "pinky issue" is not a big deal and also that Stephen will have some continuity of care while waiting to get in to the adult GI. Good luck now with psych

I'm likely part of that "lost at the time of dx club", I likely missed a good chunk of what the GI told us. I do remember hearing that his crohns was severe and was all throughout his colon and rectum as well as a couple feet of his ileum with some fistulas around his TI (thankfully the GI drew me a picture - that was helpful). We were still offered exclusive EN despite the involvement of the colon - and like Dusty said, I think there have been some more recent studies suggesting that EN may work for colon involvement too for CD (not UC). It certainly did for us.
Also wonderful to hear about the weight/height gain. Our clinic said that growth in height (more so that weight even) was a really important indicator of how nutrients are being absorbed... so that's good news!
My son's stuck at just below 140 lbs (at 5'11") and he can't seem to gain weight - this along with the fact that he still has diarrhea 3-4 times a day is concerning me... something to bring up at our adult GI meeting in Aug., I guess. I'm considering trying those physilium husks I've heard some of you talk about.

Tesscorm · Jul 9, 2012

Thanks S mom

Just curious, is your son still doing any EN? As I said above, Stephen still ingests 1500 per day from the formula... no doubt this has helped with his weight gain. Before getting sick, he was approx. 150 lbs, 5'10" and was down to 127 lbs when admitted... so, although he isn't showing symptoms and seems to be absorbing nutrients, it has to be the maintenance EN helping him along to gain all this weight.

(Wow, he's still slim now... writing it down now, I can't believe he was almost 40 lbs lighter last May! :hallo3

By the way, we were in Niagara over the weekend... I'd thought of you before we went, it would've been nice to connect with the boys but... we were there for a tournament, took my parents along, etc.... just became too complicated! :yrolleyes: But, did the Clifton Hill tour, haunted houses, etc.!

crohnsinct · Jul 10, 2012

Ditto S mom, our doc gets way more excited about gaining in inches than pounds...even though pounds are still good.

Awesome news Tess. Now if only work would leave you alone.

Tesscorm · Jul 10, 2012

Yeah!!! Major disruptions to my focus! (Disruption to my reading/learning/replying HERE, not my work! :lol

S mom · Jul 10, 2012

Ya, work gets in the way of a lot of things - hard to focus

And, nothing like a little cheesy tourist trap glitz at the Falls... we do everything to avoid going there in the summer months but you gotta do it now it now and then!
It's scary how skinny they get - my son was at 98 lbs when admitted to hospital (at 5'10"). He looked like a famine victim. Almost reaching 140 has been a huge milestone.
And, no, unfortunately, he's not doing EN anymore. Once he got the all clear to start back on food in December, the tube came out and he was done (emotionally and physically) with the whole EN thing and the GI's didn't seem to encourage a continuation like you have done. I tried to get him to drink some after the tube came out but he couldn't take the taste. Since he didn't figure out how to take the tube in and out every day, it has made something we haven't really considered... he had had enough of having the tube taped to the side of his face!! He was born with a cleft lip and I'm not sure whether there is something funky going on in his nasal cavities but he (and the nurses) had a really difficult time inserting it each time. It's a good idea, however, I may ask next time whether or not there are any more palatable forms that he could drink for extra nutrition/calories... thanks for the idea!

Tesscorm · Jul 11, 2012

S mom ,

OMG, 98 lbs at 5'10"!!!! Stephen was the same height and just before being diagnosed, I remember touching his shoulder and thinking he was just skin and bones! I can imagine how worried you were!!!

But, that's great that he's gained 40 lbs!! Absolutely a huge milestone!!

I know that Modulen is a drinkable version of EN. We haven't tried it but nurse gave us a couple of can to try out (more convenient for vacations, etc.). And, the Modulen can be flavoured with chocolate, etc. syrups. Also, as your son is not on EN for treatment purposes, if it's just for weight gain, Carnation breakfast shakes taste really good

and are full of vitamins (and calories). Even before Crohns, when my kids were younger, I would give them half a shake each with breakfast (they are a bit thick/heavy to have as a drink 'with' a meal, so I diluted it with milk).

(PS... :lol: I like the cheesy glitz :redface: My husband rolls his eyes at me, but I love all the haunted houses, bright lights, etc. We are usually out there for tournaments once a year. Also love Niagara on the Lake - if we're without kids, I'll happily forgo the cheesy glitz and head for the wine tastings! :lol:

S mom · Jul 12, 2012

Ya, I was a "basket case"... don't think I slept for months... I'm still a basket case now at times - lol :ysmile: Maybe it's good that I live in "wine country"!

Thanks for the ideas! Maybe I'll see what he thinks of the Carnation shakes... I tried to get him to drink those Ensure drinks that you can get from the grocery store but that went nowhere fast - he just ignores me like only a teenager can. I think it might be because I was making him drink them before his dx and he now equates the taste with feeling sick. So, maybe something new and different will interest him. I know our GI said something about drinkable EN coming out recently in Canada (back in the fall) so I'll ask about that Modulen too when we are in.

Tesscorm · Jul 16, 2012

Finally got results from Stephen's bloodwork... I'm annoyed it took so long! I don't get it, this is supposed to be a world renowned children's hospital and I'm feeling like Stephen's been, not 'neglected', but a bit lower priority!! At his last apptmt, GI said 'if we don't call you with results, then all is fine'. Well, that wasn't going to happen :lol:, so I sent email last Wednesday, no response and then called on friday and got results 10 days later. If I hadn't called, would they have called???

His CRP (27) and ESR (26) are still elevated but about the same as last time. BUT, his ALT and AST are much higher - ALT 100 (was approx. 60 in April) and AST 62 (was about 40) (the previous numbers have been pretty consistent since last year). But, now I'm really worried about what this could mean??? Why would his LFT numbers be rising?

Nurse's email said they are going to try to move up adult GI apptmt.

Are these numbers considered really high?? Are they high but not dangerously high? Could something have caused them to be so elevated at his last test? I'm not very familiar with any of these concerns so don't know how worried I should be? :sign0085:

Mom2oneboy · Jul 16, 2012

I understand why you are annoyed and certainly think it's justified. Hopefully, you're new GI will have everything online where you can see it as soon as it's posted.

Regarding the AST and ALT numbers.....does the report show what the normal range is? I've had S's bloodwork at two different labs and one shows the normal range is 12-32 for AST and 8-30 for ALT. The other shows the normal range 10-45 for AST and 10-50 for ALT. So knowing the normal range would help you know where he is on the scale.

Aren't AST and ALT markers for liver function? I've never paid much attention to these numbers although S is always tested for them. I'm curious now how they relate to Crohn's.

Tesscorm · Jul 16, 2012

I do have the 'normal' ranges at home, not on hand here but, from what I recall, they are somewhere along the lines that you mentioned.

At the last appointment, when his GI mentioned methotrexate, I did ask about Stephen's already slightly elevated numbers but his GI said that those elevations (at the 60 & 40 levels) were slight and he wouldn't be worried until they reached around 240 (now, don't remember if he was referring to AST or ALT) but, in any case, the current figures are 50-60% higher than the last. I just don't know if the absolute numbers (the 100 & 60) are dangerously 'high' now, or if the change indicates a serious concern or if its something to be looked at but not necessarily something that is dangerous yet or urgent???

Now I'm also thinking that this means that Stephen will not be a candidate for methotrexate or imuran/aza... he may need to move directly to the biologics???

crohnsinct · Jul 16, 2012

How ridiculously frustrating to have to wait for info like that. I can gaurantee if any of them were kept waiting for any kind of info from any kind of business they would be mad and this is your child's health we are talking about.

Sorry, I don't know anything about the liver tests but it sounds to me that even if they aren't in the worrisome range theya re climbing and that is probably why they are trying to get you in to adult GI sooner.

They monitor O's liver on Remicade also...not sure what that might mean to S in terms of it being an option for him.

Keep us posted.

DustyKat · Jul 16, 2012

Hey Tess,

Good lord! Time for the :voodoo: on the wait for those blood tests! That is ridiculous.

Our reference ranges are different again with normal being...AST <35 and ALT <30. These two enzymes aren't actually an indicator of liver function as such, you can have an elevated AST and ALT and still have a normally functioning liver. So it may not preclude Stephen from the immunosuppressives.

These two enzymes generally indicate inflammation or damage to the liver. Since Stephen's levels have been consistently elevated a one off glitch can be ruled out. Exercise can affect readings but I don't know if that would produce the consistent levels that you have seen. The other thing I would look into as a possible cause before assuming it is has something to do with his Crohn's is his enteral feeds. That has been the other constant in his life and I wonder if something contained within the formula is having an effect on his ALT & AST??

Good luck hun! I surely hope it is easily explained away!

Thinking of you, :heart:
Dusty. xxx

Tesscorm · Jul 16, 2012

The delay has really upset me! I just hope it's not a factor of being in a large, busy IBD clinic in a large, well known hospital (i.e. too many acute patients and the less worrisome ones get 'downgraded')... because, if it is, then I'm worried the next GI could be the same

But, I don't want to have preconceptions so, we'll just go with it... let's just see when the apptmt can be made...

I've done some brief research and haven't found anything relating to EN that could really explain elevated enzyme levels (if anything, I found a very brief comment that EN should have a lowering effect).

But, interesting what you said about exercise... Stephen has recently been weightlifting quite a bit and I found a study "Muscular exercise can cause highly pathological liver function tests in healthy men" that noted that AST and ALT can rise significantly and remain elevated for 7 days post-exercise (specifically weightlifting). Don't think that explains the consistent 'slight' elevated levels for the last year but may explain the recent sudden rise.

A little bit off topic but, Dusty, can you tell me what it means when the text within the study says: (P < 0.01)??

Onward and upward, right? :angry-banghead:

DustyKat · Jul 16, 2012

Hey Tess,

I am so far removed from an expert in this it isn't funny! But I shall laugh anyway! :ylol:

When looking at studies P=Probability. So when it is stated as P<0.01 then there a 1% chance that the result was accidental. I will happily stand corrected if I have that arse about in some way!

Dusty.

Tesscorm · Jul 16, 2012

You may not be an expert but very FIRST google - 'exercise and liver enzymes' and there was the study! :lol: Stephen has seriously just started to regularly weight lift about 4-6 weeks ago, the study says moderately active men 18+ (Stephen's only other recent activity has been a bit of yoga and working as a soccer ref = moderate activity)

Quote:
Weightlifting results in profound increases in liver function tests in healthy men used to moderate physical activity, not including weightlifting.
Liver function tests are significantly increased for at least 7 days after weightlifting.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2291230/

You're a star! :medal1:

Stephen's update and transfer

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