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Crohn's Disease Forum » Parents of Kids with IBD » Stephen's update and transfer


 
05-30-2012, 11:53 AM   #1
Tesscorm
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Stephen's update and transfer

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

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.
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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
05-30-2012, 12:10 PM   #2
crohnsinct
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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?
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Daughter O dx 2/1/12 at age 12
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Vit d 2000IU
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Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
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05-30-2012, 01:24 PM   #3
Johnnysmom
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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
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05-30-2012, 01:29 PM   #4
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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!

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.
05-30-2012, 01:33 PM   #5
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Tess,
That is terrible that they are making him wait that long for an appt. Is there anywhere else he can go?
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
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Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
05-30-2012, 01:35 PM   #6
crohnsinct
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... 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.
05-30-2012, 01:37 PM   #7
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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?!?!? 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.
05-30-2012, 01:51 PM   #8
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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 , 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...
05-30-2012, 02:32 PM   #9
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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......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 ) 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!

Dusty. xxx
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05-30-2012, 02:57 PM   #10
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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.
05-31-2012, 02:41 AM   #11
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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!
05-31-2012, 07:04 AM   #12
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I hope some thing work will for him, these next five months.
Keep up the good work mom. Your doing a great job.


Farmwife

Last edited by Farmwife; 05-31-2012 at 07:58 AM.
05-31-2012, 07:54 AM   #13
S mom
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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
05-31-2012, 08:41 AM   #14
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S mom,

It is a tumultous time for us parents! Stephen decided to go back to high school for one more year - 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! 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! 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! 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!
05-31-2012, 01:02 PM   #15
S mom
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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!
05-31-2012, 03:35 PM   #16
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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...)
05-31-2012, 05:12 PM   #17
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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 !

I sure hope things get straightened out quickly with that transition !! Best of luck !
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06-01-2012, 05:48 AM   #18
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I don't understand all this "victory lap" and "taking another year of high school"! I'm so confused!

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!

Dusty. xxx
06-01-2012, 08:52 AM   #19
Tesscorm
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Dusty - great idea - personal assistant for Stephen!

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 ).

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.
06-01-2012, 09:05 AM   #20
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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
06-01-2012, 09:12 AM   #21
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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
06-01-2012, 09:17 AM   #22
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Last year? Darn! Just when I was getting set to move
06-01-2012, 09:41 AM   #23
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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.
06-01-2012, 09:55 AM   #24
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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?
06-01-2012, 10:36 AM   #25
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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...
06-01-2012, 03:17 PM   #26
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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.
06-04-2012, 09:58 PM   #27
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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.
06-05-2012, 07:46 AM   #28
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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..
06-05-2012, 08:24 AM   #29
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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...
06-05-2012, 08:31 AM   #30
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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.
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