Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Just realized it has been 7.5 years since diagnosis!


 
01-17-2016, 10:23 PM   #31
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
We figured out one possible case of Caitlyn's pain, Cdiff is back again. The doctor called and said the lab called him and said her Cdiff came back positive again. I am not at all surprised. He called in Vanco but the pharmacy so t have it until tomorrow.
__________________

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.
01-17-2016, 10:35 PM   #32
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
Ugh! I'm sorry to hear it!
__________________
Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
01-17-2016, 10:45 PM   #33
Maya142
Forum Monitor
 
Maya142's Avatar
Oh no, no wonder she is miserable! I hope Vancomycin kicks in quickly and Caitlyn feels better SOON!
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-17-2016, 10:50 PM   #34
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Hugs
On the CDiff
__________________
DS - -Crohn's -Stelara
01-17-2016, 11:02 PM   #35
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
Not again! So frustrating. Hope she feels better soon.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
01-18-2016, 07:08 AM   #36
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: Connecticut

My Support Groups:
ugh! Poor Caitlyn! How many times has she had cliff now? At what point do they consider fecal transplant?
01-18-2016, 11:45 AM   #37
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Cic,
This is only her second time. I am at least glad that we have an answer for this pain and am hoping the Entyivo is working for the actual crohns.
01-18-2016, 11:54 AM   #38
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: Connecticut

My Support Groups:
Cic,
I am at least glad that we have an answer for this pain and am hoping the Entyivo is working for the actual crohns.
True dat! Me to!
01-18-2016, 01:53 PM   #39
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Fingers crossed once she gets rid of the c diff things will get better!
01-25-2016, 03:59 PM   #40
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Caitlyn is having pain again. Why can't this poor girl catch a break? I am hoping it is from her being a weeks before entyvio.
On a happy note Caitlyn got to participate in the Miami Marathon. She raised $3000 for the camp she goes to, it is a special camp for kids with chronic illness and everyone who raised the money got to participate in a special weekend in Miami and then either ran or were pushed in a running wheelchair for the whole or half marathon. Two of the country sellers took turns pushing Caitlyn for the half marathon. She ran for two of the miles though herself and we met her at the finish line. I will try to post a picture later. Then we all went back to the hotel and hung had an after party. It was really fun and nice to meet some of the other kids and their Mom's who I knew from Facebook but had never met before. There are two other kids with Crohn's and one with UC who we have spoken a lot with. One of the boys who has Crohn's ran the whole marathon. He is 17. We couldn't believe he did the whole thing, just amazing.
01-25-2016, 05:49 PM   #41
Optimistic
Senior Member
 
Optimistic's Avatar
 
Join Date: Oct 2014

My Support Groups:
This made my day!

She is a very impressive young lady. I know you are proud.

Oh how I want her to get beyond all this pain!
01-26-2016, 09:38 AM   #42
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
That's really neat. I think that kind of camp sounds great, especially since the Camp Oasis didn't work out well this year (she had a small sleep seizure two nights in a row and so they said she was too complicated for them). Sounds like the marathon was a success!

I'm sorry about the pain returning. That sucks!
01-26-2016, 10:11 AM   #43
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
That's great that she was able to participate in the marathon (and that she raised so much money for her camp!). Sorry that she's in pain now though--hope the entyvio helps.
01-26-2016, 06:11 PM   #44
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Fantastic raising that money and completing the marathon. Sounds like a good day. Hope she feels better once she gets the Entvyio
01-26-2016, 07:39 PM   #45
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
I called Caitlyn's doctor and spoke with them because I remembered when she has Cdiff last time they held the entyvio. The nurse told me no as long as she has been on the antibiotics for ten days it is fine. Two hours later her doctor calls, firstly he asks if anyone to,d us Caitlyn had Cdiff. I told him yes his partner called last Sunday and to,d us and called the scrip in. Then he says no she can not have the entyvio until she tests negative for Cdiff. we have to go to the lab on Friday for her to be rechecked. Don't you love how the nurse gives you totally the wrong information? I love her doctor but I don't like their set up for getting messages to the doctor and how normally the doctor never calls you back. They need a better system.
01-26-2016, 10:19 PM   #46
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
Well, your doctor did call you back. Most of the time no one calls me back unless I'm really losing it. My doc in AK always called me back personally. She was the best peds GI ever! I hate it when the receptionist gives me medical advice, like today. I feel like she isn't taking my concern seriously and that she probably won't pass my message on.
01-27-2016, 11:22 AM   #47
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Carolin,
I so agree with this. I also don't know if his nurses are real nurses or just medical techs. If they are med techs they really should not be giving advice.
01-27-2016, 12:08 PM   #48
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
I never 'call' the GI or his office with a medical question - I always email. It allows me to list all symptoms and my concerns and, as my question(s) are passed on, there's no miscommunication between me - staff - GI. I know most of the time (if not all the time), our GI's assistant directly forwards my email to GI and then she forwards his reply to me.

If it's possible, check if your GI's offices will communicate using email. I think people are generally less likely to give an 'off the cuff' response if they are responding in writing???

__________________
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
01-27-2016, 02:56 PM   #49
Madhu
Senior Member
 
Madhu's Avatar
 
Join Date: Jul 2015
Location: New Jersey

My Support Groups:
I agree with Tesscorm. Infact, our GI allows us to email him directly. And he responds as soon as he can.
__________________
Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
01-27-2016, 02:58 PM   #50
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: Connecticut

My Support Groups:
We email also!
01-27-2016, 08:55 PM   #51
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Unfortuantely our GI office does not offer this. I wish they did.
01-27-2016, 09:04 PM   #52
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Portal for results and questions here as well

Nurses forward responses back ..... Most of the time
01-29-2016, 07:44 PM   #53
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
We have no electronic options at our GI's office. They never called back either, like I suspected.
01-30-2016, 08:55 PM   #54
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Caitlyn was of course not able to go until tonight. Ugh! I don't k ow if we can find an open lab tomorrow which means we won't get it in until Monday and then the resukts may not be back in time for Tuesday.
02-25-2016, 04:14 PM   #55
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Back to the GI again for worsening pain. We never make it out to the six week follow up. 😓
Her fecal calp came back at 500. He wants her to try a small dose of prednisone every day for four weeks and continue with the Entyvio.
Then we repeat the fecal calp in five weeks and see what the results are.
02-25-2016, 04:25 PM   #56
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
OMG, you and she so much deserve a break! I hope the pred gets it under control and the entyvio can then manage it! Just lots of hugs and wishes this works!
02-25-2016, 05:27 PM   #57
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
I agree with Tess--you guys deserve a break! Really hope the pred helps.
02-25-2016, 10:56 PM   #58
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Thanks. I really hope it works if not we may be looking at surgery to remove the area that won't heal.
02-25-2016, 10:57 PM   #59
Maya142
Forum Monitor
 
Maya142's Avatar
Sending hugs Kim. Poor Caitlyn - she really deserves a break. I hope you can avoid all the side effects of steroids (puffy face bothers my daughter the most) with the low dose.
02-26-2016, 12:03 PM   #60
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
How frustrating for her! Hope the pred helps, she so deserves to be pain free
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Just realized it has been 7.5 years since diagnosis!
Thread Tools


All times are GMT -5. The time now is 04:07 PM.
Copyright 2006-2017 Crohnsforum.com