Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » How often does your child see their GI?


01-05-2012, 04:59 PM   #1
izzi'smom
Senior Member
 
izzi'smom's Avatar
 
Join Date: May 2011
Location: New York

My Support Groups:
How often does your child see their GI?

Izzi is uncontrolled, although not the worst she has ever been.
14 weeks ago we changed her Remi dose and frequency.
The last time she SAW her GI was 10/24 for her ng tube insertion.
She is losing weight again. She has frequent, loose, urgent stools that wake her up in the middle of the night.
She has been on the same 2ml of pred 2x a d ay for 2 months now.

I feel like we aren't getting anything but a Remi script from our GI. I feel that we should be having regular appts, not for IZz to see him but for he and I to discuss her care and how it is going. She is NOT under control and we are changing...nothing.

His office has NEVER called with any test results, including her MRE.

I am super discouraged...I don't want to switch docs but I have a bad feeling this is the road I am headed down
__________________
Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
01-05-2012, 05:16 PM   #2
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Oh Angie...

Under the circumstances you are in I think you should be seeing the GI at the very least 3 monthly but given Izzi's age and lack of remission I think she should be reviewed after each infusion. What is the schedule with infusions at present?

With Sarah, she didn't see a GI until after diagnosis and was in remission but for the first year she was seeing the GI every 3 months. Matt was set up for 6 weekly visits until stabilised and the GI was happy with his progress. Things went pear shaped from there so was being seen by the GP weekly, who liaised with the specialist, between specialist visits. Now that he is solidly in remission we are at 6 month visits but often we just touch base by phone due to the distance.

Good luck hun, it is awful to have to be put in this situation but I know you will do what needs to be done.

Dusty. xxx
__________________
Mum of 2 kids with Crohn's.
01-05-2012, 06:32 PM   #3
dannysmom
Forum Monitor
 
Join Date: Oct 2010
Location: NY

My Support Groups:
Hi -
For the last 2 years, my son sees his GI every 3 months and he always returns phone calls and tries new treatments or tests in between appointments. We are from NY too and see a doctor with NYP/Columbia/Morgan Stanley Children's hospital. I understand that Mount Sinai is very good for Crohn's too.
__________________
Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
01-05-2012, 07:51 PM   #4
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Hi Ang,

Stephen doesn't have a long history but the schedule is 'supposed' to be every two months. Unfortunately, something must have messed up at the clinic (think his Aussie GI went home for the sun! ) and his end of Nov apptmt has been rescheduled 3 times!
01-05-2012, 08:04 PM   #5
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
EJ sees the GI every six months and the liver spec. every six months alternately so we are at Vanderbilt every three months. They run bloods every time and the liver spec. is also an internist so she too is versed in IBD.

Oh hell Ang, if you'd just read more on the internet you'd have Izzy straightened out in no time
__________________
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
01-06-2012, 08:14 AM   #6
izzi'smom
Senior Member
 
izzi'smom's Avatar
 
Join Date: May 2011
Location: New York

My Support Groups:
Thanks, all! The morning has me feeling better, as usual, plus her GI called me at 9:30pm (!) yesterday and left a message (I am not feeling well and was in bed at 7:30 with my son lol!) and is supposed to call back any moment now.
Mark, if the internet made her better I think all of our kids would be cured lol! Sadly we can't believe everything we read..."My Crohns was cured by petting a calico cat on Tuesdays while drinking green tea leaves steeped in toilet water"
That being said, I am going to ask about moving her Remi up even more (we are at every 7 weeks) if her symptoms subside again; LDN, and Tacrolimus...we shall see what he has to say! (I hope...he said 8:00 and it is 8:14 )
01-06-2012, 09:58 AM   #7
Brian'sMom
Senior Member
 
Brian'sMom's Avatar
 
Join Date: Dec 2010
Location: Kansas

My Support Groups:
Angie,
When Brian was not doing well we were scheduled to see the GI every month. But sometimes we saw them sooner because of tests they were doing. Once he got onto Humira and is labs were headed in the right direction (About 3 months of good labs) we started spreading it to every 3 mos. At his 11 month mark of being on Humira they moved his appt to every 4 mos. I think the plan is if labs continue to show remission, every 6 mos is going to be the plan at some point. Our GI is slowly moving us there.
__________________
Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
01-06-2012, 11:20 AM   #8
Lisa
Adminstrator
 
Lisa's Avatar
 
Join Date: Apr 2010
Location: New York

My Support Groups:
If I remember correctly, I used to go every 6 months for a check up when things were going well.....maybe a year apart if things were going REALLY well.....
__________________

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
01-06-2012, 11:24 AM   #9
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Angie,
Caitlyn has pretty much seen her GI monthly to 6weeks out at the most except for the summer when she actually went 3 months in between.
__________________

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.
01-06-2012, 11:24 AM   #10
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
PS. Don't be afraid to fire your doctor if you are unhappy. We did!
01-06-2012, 12:52 PM   #11
izzi'smom
Senior Member
 
izzi'smom's Avatar
 
Join Date: May 2011
Location: New York

My Support Groups:
I spoke too soon...It is 12:49p and no phone call...ARGH! I wish I was a little faster last night when I heard the answering machine...maybe I could have caught him (although I can't imagine talking to him in my sleepy state would have been terrific).
We have NEVER been well for more than 6 weeks...which is why I am SO frustrated. I would hope for appointments every month or 6 weeks when her Crohns is not controlled. I am considering "firing" him...but he is pretty convenient (only 30 minutes away)...the phone will be in my pocket ALL DAY waiting for him to call!!! (I feel like a teen with her first crush lol)

Last edited by izzi'smom; 01-06-2012 at 04:20 PM.
01-06-2012, 02:48 PM   #12
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
I hope he keeps to his word! Good Luck!...

Dusty. xxx
01-06-2012, 05:21 PM   #13
izzi'smom
Senior Member
 
izzi'smom's Avatar
 
Join Date: May 2011
Location: New York

My Support Groups:
He called...PHEW! We will be setting up regular appointments and he is looking into more frequent Remi doses if she does well after this one. I always feel better after talking to him... I'll discuss the other issues with him at our next appt
01-06-2012, 05:47 PM   #14
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Yay!!!

This is so fab to hear Angie!


Dusty. xxx
01-06-2012, 06:13 PM   #15
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
So great to hear!
01-06-2012, 08:13 PM   #16
Brian'sMom
Senior Member
 
Brian'sMom's Avatar
 
Join Date: Dec 2010
Location: Kansas

My Support Groups:
Angie, YEEESSSS!! I'd mention to him that you'd like to see him more often. If you feel better after you talk to him, maybe he's the right doctor...but needs to know your concerns. Then hopefully he'll tailor himself to you. Doctors should adapt to the parents needs in my opinion.
01-08-2012, 04:50 PM   #17
LilyRose
Senior Member
 
Join Date: Aug 2011
Good on you Angie!

I'm glad you made your feelings known.
FYI we are seeing our GI 3monthly and my little one is doing OK at the moment with relatively minor issues. When we were monitoring something we were seeing him monthly.

best wishes
LilyRose
01-08-2012, 09:52 PM   #18
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
I hope that your next appointment gives you some peace of mind! Either a change in treatment or, at least, a satisfactory reason for staying on the same course for a bit longer. It certainly helps when you can discuss your concerns with the GI on a regular basis and feel assured that he/she is fully aware of the effects (or 'non' effects) of current treatment.

Thinking of you and Izzi!
01-10-2012, 12:04 AM   #19
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

My Support Groups:
When things are "stable" we go every 3 months. Otherwise every other or even every month.

J.
__________________
Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
01-10-2012, 07:35 PM   #20
ChampsMom
Senior Member
 
ChampsMom's Avatar
 
Join Date: Mar 2011
Location: North East Coast - USA

My Support Groups:
Alex sees his GI a minimum of every 3 months. I'm with Kimmi! If you have ANY concerns on the lack of contact your GI is giving, I'd shop around!

Is there a Children's Hospital in your "area" (for me my area is about an hour away, but *well* worth the drive!) They are really great and understand Crohn's in kids!


Good luck Angie!!! Take care of yourself too!

Shell
__________________
Shell

Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
Prayer
Priesthood Blessings
Reply

Crohn's Disease Forum » Parents of Kids with IBD » How often does your child see their GI?
Thread Tools


All times are GMT -5. The time now is 01:03 AM.
Copyright 2006-2017 Crohnsforum.com