Open Letter to the Ped GI

[Mehita]

I'm not sure if I'm going to follow through on this, but thought it would be a good thing to discuss here anyway. If you were to write an open letter to your child's ped GI, what would you want them to know?

For example, our GI didn't know the Anser IFX text for Infliximab was $2500 and a pain in the butt to work out with insurance. Yes, it all usually works out in the end with Prometheus, but if I didn't belong to this Forum, I'd be freaking out. Wait, I DID freak out...

So, what are other things, big or small, would you like your ped GI to know? Mull it over, post your thoughts.

 

[my little penguin]

Not sure why you would need an open letter
Are you having issues with the Gi?
I have found talking to the Gi during appts to be effective
And communicating through the portal in between appts
Plus what one of us would be having issues with is not the same as what you are having currently issues with since it prompted and open letter

Honestly insurance issues are always going to be there
And the doctor can not try to figure out and remember which child has what insurance plan and what little things happen in the background

They need to focus on the medicine
If I know xyz isn't covered for little things then when it's ordered I tell the gi
But most of the time the Gi office already is on top of what isn't covered and let's the doctor know ahead of time

Just not sure of the purpose of the letter
If it's to vent over how much trouble getting the test covered was
I suggest venting here
Not in a letter
Gi are busy doing medical things for many patients at once some which are extremely complicated ( transplants etc..,) and do not have time to read a vent letter

If there are one or two medical items that are bothering you then bring them up during the appointment

 

[Mehita]

I didn't mean for this to sound like its about me. I was just trying to offer a place for the parents to voice thoughts and frustrations that we sometimes keep bottled up for whatever reason. Simply a place to vent a little, but if comments are going to be analyzed and judged... then never mind.

 

[my little penguin]

No one is judging
Your post sounding like you wanted to write a letter to your son Gi
So I was questioning the why
I suggested venting here instead
We all vent scream ask questions here on a daily basis

 

[Maya142]

I think I'd like them to know that things they think are not a big deal can be a VERY big deal to kids - like having a feeding tube in all the time.

Our GI kept acting like it was no big deal for an 18 year old to have a tube taped to her face for the end of senior year and graduation. It was also very uncomfortable and just a pain.

I understand that my daughter really really needed one, but it would have been nice if her doctors been more understanding about it.

I also would not actually send an open letter to a doctor, but it's a great thing to think about!

 

[pdx]

How about an open video? My daughter is a delightful person 90% of the time: funny, enthusiastic, inquisitive, chatty. However, she is usually sullen at her (wonderful!) GI's office, because she thinks of the doctor's office as a place where she gets prescribed medicines and treatments that she hates. We're working on getting her to see that her doctor is the one who has given her her life back, and I think she's starting to get it a little. But in the meantime, I'd love to send our GI (and the infusion nurses!) a video of E outside of the doctor's office, so they'd know her as something other than sullen teenager. (And yes, I know the doctors don't care, but it would make me feel better!)

 

[happy]

Many years ago when my son was having his GI difficulties I was written off as an anxious, overprotective mother who was imagining GI problems for my son.

Therefore, I would want a statement in the open later to the effect that most parents would prefer not to be monitoring their child's growth, food intake, bowel habits and energy levels. And parents are actually the best people to know whether a child is ill (especially if they have more than one child and the other child is healthy). Parents are busy people who would prefer not to spend their time in doctors' offices and medical laboratories. In short, please believe parents when they say their child is ill; parents have already tried everything they can think of to help their child regain their health long before they get to you, Dr. GI. Thank you.

 

[malorymug]

I would like to tell the GI and the office manager that their scheduler sucks! He doesn't return phone calls, he can't remember when my kids needs to have remicade, he argues with me when the doc makes a frequency change, and twice has screwed up our remicade infusions.

Actually, we have an appointment in the morning with the Nurse Practitioner. I just might tell her in person.

 

[kimmidwife]

I love this!
My biggest issues with our GI that I would write to him about is number one his office staff is terrible. Two they need a better way to get him messages and three they need a better way for him to follow up on Importsnt labs.

 

[Farmwife]

Give handouts for protocol for emergencies, fevers, what if's,...................
I know some have docs that are great at this but
more than once we've heard parents say, the GI never told me what to do in this situation.