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


 
06-05-2012, 08:42 AM   #31
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
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...
__________________
Tess, mom to S, 22
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
06-05-2012, 08:45 AM   #32
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
I'm so sorry to hear that the system is so inflexible Tess.

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
__________________
Mum of 2 kids with Crohn's.
06-05-2012, 09:00 AM   #33
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
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???
06-05-2012, 09:04 AM   #34
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
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!
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
06-05-2012, 09:43 AM   #35
willsmom
 
willsmom's Avatar
 
Join Date: Dec 2011
Location: Ontario
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.
06-05-2012, 09:57 AM   #36
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
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.
06-05-2012, 10:02 AM   #37
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

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

We're trying to find Stephen a new GP His current one only works part time now and trying to get in to see her sometimes takes a couple of weeks! 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... As much as I am a control freak, it seems I have NOTHING in my control at this point! Talk about stress!

Thank god Stephen's, at least, feeling well!!!
06-06-2012, 06:34 AM   #38
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Yes Tess! Thank God!

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

Good luck hun...

Dusty. xxx
06-06-2012, 11:58 AM   #39
S mom
Senior Member
 
S mom's Avatar
 
Join Date: Jan 2012
Location: Ontario

My Support Groups:
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
06-06-2012, 12:34 PM   #40
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
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...
06-06-2012, 12:54 PM   #41
S mom
Senior Member
 
S mom's Avatar
 
Join Date: Jan 2012
Location: Ontario

My Support Groups:
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.
06-06-2012, 01:10 PM   #42
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
OMG 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!

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 , I will ask him about plans for Sept. 13 and let you know
06-06-2012, 01:48 PM   #43
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
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!

(See, Dusty, Stephen DOES have a personal assistant - ME! )
06-06-2012, 10:22 PM   #44
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
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!
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
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.
06-07-2012, 07:53 AM   #45
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
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! ) - 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?
06-07-2012, 10:58 AM   #46
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
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!
06-07-2012, 12:58 PM   #47
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Gosh, don't we all know about multi-tasking?!?!?

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

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! 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! 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...
06-07-2012, 01:46 PM   #48
Mom2oneboy
Senior Member
 
Mom2oneboy's Avatar
 
Join Date: Mar 2012
Location: I'm a southern girl
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!!
__________________
Shelley
11yr old son
dx Crohn's 2/2012
Currently on VSL #3
Started EN 4/2
Methotrexate 6/6/12
Remicade 09/30/12

Life is not about waiting for the storms to pass...It's about learning to dance in the rain.
06-07-2012, 08:31 PM   #49
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
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!
06-07-2012, 09:35 PM   #50
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
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!

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." 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. What I know, I know from all of you!
06-07-2012, 10:44 PM   #51
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
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.
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
06-08-2012, 07:39 AM   #52
S mom
Senior Member
 
S mom's Avatar
 
Join Date: Jan 2012
Location: Ontario

My Support Groups:
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!
06-08-2012, 08:25 AM   #53
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
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! :LOL. 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.
06-08-2012, 09:16 AM   #54
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
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.
06-08-2012, 03:06 PM   #55
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
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. 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
06-08-2012, 03:12 PM   #56
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
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!!! I can see it... (we must be channelling....)

Doctor: How are you feeling?

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

I've been there!
06-08-2012, 03:13 PM   #57
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
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"
06-08-2012, 03:22 PM   #58
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
I guess they're all the same...!

Give her a couple more years... she'll be happy to be talking about her 'booty' to some tall, dark and handsome doctor!
06-08-2012, 03:41 PM   #59
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
LMAO
06-14-2012, 08:32 AM   #60
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
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?
Reply

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


All times are GMT -5. The time now is 12:48 AM.
Copyright 2006-2017 Crohnsforum.com