Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » CD with chronic C-diff


03-08-2013, 08:58 AM   #1
Kinsey
Senior Member
 
Kinsey's Avatar
 
Join Date: Feb 2013
Location: Virginia

My Support Groups:
CD with chronic C-diff

Yesterday I managed to get a Doctor from John Hopkins to see my son today, however, I could manage to get a referrel, my local GI doctor says he doesn't give referrels. He said to go to his Pediatric group, and they said no since they haven't seen him in 1 and half years.

The Doctor was nice enough to speak with me on the phone for over 30 minutes going through his records from his Pediatric GI we switched from. One more round of Anti-biotics, he says he's going to go all the way up the antibiotic food chain to clear it before he'll send him somewhere else.

Now that my son has moved 30 minutes away and resides in WV now, I can get him a local Primary Care physician and go anyways!

I was so optimistic because he's been having ocassional formed BMs recently. I think the probiotics and coconut oil really help too.

I have however, found some peace for the moment. When I pick up the new antibiotic, I' post the name so those of you who may know of it can give me some feedback. Kinsey
03-08-2013, 09:45 AM   #2
Kinsey
Senior Member
 
Kinsey's Avatar
 
Join Date: Feb 2013
Location: Virginia

My Support Groups:
I could not get a referral for the apt. today at John Hopkins. Disapointed, yes, hopeful, yes. The pieces seemed to crumble yesterday with the news of on more antibiotic for the C-diff. But I have picked myself up and brushed off. Will spend the day instead with my son, taking him on errands. The John Hopkins people are great, they said as soon as I get the referral, (Brad hasn't seen the primary care physician, so they wouldn't give one over the phone or fax, and neither would the new GI specialist. On the phone yesterday he said that he didn't realize that Brad has had the C-diff from the first time he was hopitalized, which was the first day the Pediatric GI looked at him. they did all the scopes up and down, but, they first said and treated him for UC.
03-08-2013, 11:34 AM   #3
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
How long has it been since he had c-diff and what all has he tried to irradicate it? I know it is a nightmare to treat sometimes... It just may be a matter of time for the new docs to try a few things and see whether they work and get to know him. They may not be very familiar with the protocol for fecal transplant and are just buying themselves time to get informed. Sometimes I feel that we catch the docs offguard when we are too knowledgeable.
__________________
Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
03-08-2013, 07:15 PM   #4
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Hugs
Glad you were able to get to talk to the doc .

C diff is tough.
__________________
DS - -Crohn's -Stelara -mtx-IVIG
03-09-2013, 08:05 AM   #5
Kinsey
Senior Member
 
Kinsey's Avatar
 
Join Date: Feb 2013
Location: Virginia

My Support Groups:
I believe it's actually been 2.5 years of the C-diff. Changing doctors, he may be more on top eventually. But since my son only sees the specialist, he couldn't get a referral from the primary and the new GI said, "not yet, the other doctor didn't try all the things I'm going to. We see him next Wednesday.

The thing I have the hardest time with is waiting on test result, referrals and treatments.
03-09-2013, 10:28 PM   #6
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
The thing I have the hardest time with is waiting on test result, referrals and treatments.
That's true for all of us. Do you know what he wants to try next? What all has been done for the c-diff so far?
03-10-2013, 09:06 AM   #7
Kinsey
Senior Member
 
Kinsey's Avatar
 
Join Date: Feb 2013
Location: Virginia

My Support Groups:
Well when he was first hopitalized and scoped etc. I thought that when they found the C-diff (all the doctors covered up from head to toe while visiting his room. The first said (for 2 months) and treated him for UC. Rather 6 weeks. So not much 1 or 2 attempt to radicate the c-diff.

I can't really blame the doctors, Bradley, until recently was a non-compliant patient, only taking the pills that didn't smell bad, eating the wrong stuff etc. I bad with the medicine, Entocort, MB3, bunch of others.
03-11-2013, 04:13 PM   #8
QueenGothel
Senior Member
 
QueenGothel's Avatar
 
Join Date: Oct 2011
Location: Michigan, USA
http://www.ncbi.nlm.nih.gov/pubmed/22157239

Sorry this has been going on for so long. I would ask for an infectious disease consult if I were you. The GIs and surgeons never mentioned the FMT but ID did.
03-11-2013, 04:31 PM   #9
Kinsey
Senior Member
 
Kinsey's Avatar
 
Join Date: Feb 2013
Location: Virginia

My Support Groups:
Great idea!!! I will look into that.

Thank you, sometimes I'm a bit slow because I have ADD. Kinsey
Reply

Crohn's Disease Forum » Parents of Kids with IBD » CD with chronic C-diff
Thread Tools


All times are GMT -5. The time now is 12:07 PM.
Copyright 2006-2017 Crohnsforum.com