Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Worrying is contagious!


03-24-2017, 09:00 AM   #1
Pilgrim
Senior Member
 
Pilgrim's Avatar
 
Join Date: Jul 2014
Location: Ontario

My Support Groups:
Worrying is contagious!

I am falling prey to the opportunistic infection worries!
She has moderate ear pain after weeks of coughing. Normally with the other kids, I would wait it out.
No fever. Should I wait for a Crohn's kid? New to us....
03-24-2017, 10:55 AM   #2
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
No, I would go in!
If your like me, the worry will get you either way.
If the doc says it's all fine, we'll at least if something does go wrong you know you tried.
Right???
Or is this just me.
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
03-24-2017, 11:24 AM   #3
Pilgrim
Senior Member
 
Pilgrim's Avatar
 
Join Date: Jul 2014
Location: Ontario

My Support Groups:
I was able to get her in to see a nurse. Her ear was plugged so she couldn't see anything. All vitals are fine. Working on clearing the ear and go back next week.
I think part of the reason I always agonize about going in is because she looks great and while she could be crying in the parking lot, she is charming and stoic when we go in. I pretty much always look like a crazy helicopter parent.
03-24-2017, 12:34 PM   #4
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Ears with biologics need to be checked right away
Not understanding why they are making you wait to be seen again
Bacterial infections just need to be taken care of quickly and biologics stopped until infection is under control
We have done this multiple times and no issues

Waiting is just not an option
Thats where the problems start
__________________
DS - -Crohn's -Stelara
03-24-2017, 01:23 PM   #5
Pilgrim
Senior Member
 
Pilgrim's Avatar
 
Join Date: Jul 2014
Location: Ontario

My Support Groups:
I can only guess, from the nurses perspective, kid looks fine, not even wincing, other ear fine, lymph nodes fine, no fever, no red throat, all she could see was ear wax in the ear we reported pain.
I gave her the medication report and she noted it and told us to buy a wax removal product and come back next week.
All I can do is keep an eye on her and take her to ER on the weekend if needed.
Very frustrating.
03-24-2017, 01:38 PM   #6
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
We have found the pediatrician or regular medical professionals do not have experience with biologics
Or understand the urgency
Ds didn't
Until he developed mastoiditis from an ear infection
We do call rheumo /GI when need to get the extra push on treating kids with biologics and normal kids infections
03-24-2017, 06:30 PM   #7
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
I have found the same with S's GP and many ER doctors as well - I often have the sense they don't always seem to understand my concern for complications. I'm left wondering if I'm overreacting or not?!?

Pilgrim, is your daughter's GI affiliated with the local hospital? We started to go to his GI's hospital's ER department for anything out of the ordinary. I do think they are a great hospital but, if we need to put in a bit of a push, we'll mention that his GI is there (...I think his GI is fairly well recognized). I'm never sure if it actually makes any difference but certainly can't hurt. Another benefit is that all his records/results are accessible to his GI.

When S went to the ER because of the chest pain a couple of years ago, same hospital, he was referred to a cardio at that hospital and, again, both GI and cardio (and ortho re shoulder) all were aware of one another, all meds, etc.
__________________
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
03-24-2017, 09:39 PM   #8
Pilgrim
Senior Member
 
Pilgrim's Avatar
 
Join Date: Jul 2014
Location: Ontario

My Support Groups:
Good idea! Unfortunately, our GI is over 4 hours away. We are lucky to have a GP in town who has ibd, colectomy, and a liver transplant who knows all about immune suppressing drugs first hand but it is hard to get in to see him as he is booked weeks ahead.
I wish there was a way to have more connection between primary care and specialists.
03-24-2017, 10:13 PM   #9
Maya142
Forum Monitor
 
Maya142's Avatar
Do you have a pediatrician who could speak to the GI and figure out how to treat her? Someone you see regularly?

That is what we do - for regular kid stuff (ear infections, throat infections etc.), we always saw our pediatrician but had her call the GI/rheumatologist. Now she knows biologics and immunomodulators quite well, but will always call if she needs guidance.

Generally pediatricians work better than regular GP's (at least here) because they have "sick child" appts. every day and for a couple hours on Saturday and Sunday.

They almost always fit my daughter in the same day - with someone in the practice if not her own doctor.

Adult doctors tend not to do that - I know my GP will take a couple days to fit me in sometimes, even if I think I have an infection.
__________________
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
03-25-2017, 07:51 AM   #10
Pilgrim
Senior Member
 
Pilgrim's Avatar
 
Join Date: Jul 2014
Location: Ontario

My Support Groups:
No pediatrician in our city. We are in a fairly remote location.
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Worrying is contagious!
Thread Tools


All times are GMT -5. The time now is 11:35 AM.
Copyright 2006-2017 Crohnsforum.com