The latest in the occasional series of e‑patient requests, in which someone asks me to post their search for information. No guarantees; sometimes we connect with answers, sometimes not.
I know nothing about the issues – I’m just forwarding the request. Please share on social media and/or forward this to anyone who might have suggestions. On social media, use the hashtag #PedsGI, to tap into that network.
A friend writes: is there a good way for people like us to find specialists who are aligned with our engaged approach and willing to support us?
I need to find a pediatric GI who would be willing to help support my wife and me as we try to manage our young son’s case.
He’s got a very complex medical history, but today is in a pretty good place relative to where he’s been. Ironically, we’re having a really hard time getting his clinical team to stay engaged in close, frequent support us as we try to navigate the current set of problems that (although minor relative to past problems) could put us in really big trouble if left to evolve. However bad his odds were or are, we’re committed to getting him the longest, fullest life possible — we can’t tolerate problems just because they don’t threaten to put him in the ICU this month, or because the team doesn’t have peer-reviewed solutions waiting in their toolbox.
We’re looking for a pediatric GI who – in the absence of a crisis – is willing to join us down in the technical weeds, tolerate our ignorance there, and advise us as we try to navigate the uncertainty in his case in little steps to try to find a path that works for him. This would be someone who’s okay working with us remotely – by phone, email, or Skype – to consider small details we observe and small adjustments we propose, and who’s very comfortable saying “I don’t know, but…”
This would be someone willing to be informed by the standard protocols and interventions, but not constrained to them. Someone who is willing to share the problem-solving burden with us and his current care team, meaning that he or she will likely be considered an intruder on another professional’s turf.
Help! Where does this kind of pediatric GI exist?
Some comments are being posted here on Facebook.
Ileana Balcu says
There is a great pediatric GI network that works with parents: http://www.improvecarenow.org/ The network is for ulcerative colitis and Crohn’s Disease only, but once you find a GI, they most likely are more open than the general population and are more likely to help.
SmartPatients is actually running the network’s online community, so have them ask there.
Bryan Vartabedian is a pediatric GI. You might want to contact him directly to ask.
Hope this helps!
e-Patient Dave says
Thanks, Ileana – I knew about ICN but did not know they’re connected with SmartPatients – that’s important news! Great thought about Bryan, too – I’d forgotten that’s his specialty.
e-Patient Dave says
Some replies on my Facebook post cite ICN too, and other suggestions.
Amy Stiner says
Understanding the gastroenterology issue would help you find someone. I would encourage you to share the diagnosis so it is clear what kind of GI expertise you need.
There is significant sub-specialization within GI.
My son has a severe feeding disorder and we are physically moving house from Seattle, Washington area to either Boston or Philadelphia for his care.