talking to doctor about/in front of 9yo

[grays]

I’m taking my little guy to a nephrologist tomorrow. Of course I’m hoping it’s nothing and nephrologist will just shew us away. But what if I really need to talk to him and get my questions answered. My boy will see right through, “can you give me a few minutes to talk to the doctor,” or a nurse walking him out to get stickers or whatever.

 

If anyone’s been through relatively serious medical stuff with a kid, how was this handled? I don’t want to lie to him, but I don’t want him to hear scary hypotheticals either.

[Garcon1986]

A nine year old is going to be able to understand some of the things the nephrologist says. I would allow him the benefit of the doubt as a pediatrician myself. Let the both of you have a conversation with the nephrologist. It may turn out better than you think. If you want to take your little one with a nurse to play with the stickers that's OK but I wouldn't leave him out of the important parts. Your little one is going to look to you to be his rock if tough medical things need to be taken care of. Best wishes and hope it goes as well as can be.

[grays]

Thanks, Garçon. That helps. Also looks like his dad might be there, which would make it more possible for one of us to get the doctor alone. Leaving now! Gah!

[grays]

Ok... done with the nephrologist for today, at least. She was GREAT. I felt really good about her. All the news we got was good news, but we’re still waiting on bloodwork. I do feel less scared, tho.

 

As for talking to the doctor with my kid there, I did probably ask more/say more than I would have if I hadn’t read your post, Dr. G, and that was all ok. But I could not bring myself to ask what the prognosis is for the most likely explanation, if there even is an explanation for the blood. (There are some signs that are consistent with autoimmune kidney disease, but some that aren’t, including some kind of marker you’d expect to find in his urine that’s not in there. I was really worried about that bc I have T1 diabetes, so an autoimmune thing wouldn’t be out of the blue.) I don’t need any medical input from anyone, will only make me nervous, I think, but thought I’d put it out there, so you can see where we are, Garçon.

 

I do think talking to docs in front of a kid is dicey, even though it’s true that he likely can understand pretty well. As adults, I think a lot of us, and definitely my ex-h and I, have baggage that makes us emotional and less logical than we might be in non-medical situations. Ex is OCD and prone to pretty extreme anxiety and hypochondria. I have had T1 for 28 years, which means that I know you can walk in feeling fine only to find out you’ve got a disease that very well may be the thing that kills you. And with T1 comes with decades of necessarily obsessing over taking care of myself, the flip-side of which is a belief that my body really isn’t especially viable.

 

I worry that it might be impossible to shield my kid from all that baggage. I’m not sure my mother ever thought of this kind of thing but, sadly, she had an acquaintance when I was a teen (for maybe the 10 years before I was dx’d) who had T1 and was always telling me how awful it was about her eyes and her kidneys and she couldn’t get around that well bc she might get a sore on her foot. And this was not just my mother being a good friend to her, it was much more about my mother’s anxiety and fear that it could happen to me, so when it did all of that came flooding in.

 

Soooo I’m trying to treat it as logically as possible while still making him feel like I care and trying to be the best advocate.

[Garcon1986]

I think your being a great advocate is the best thing you can do in this scenario, and be his best cheerleader until he can do it himself or until he gets married, in which case the cheerleader transfers to the wifey

 

Let me know if you need any explanation of medical terminology in regards to kidney stuff. I'll refrain from giving actual medical advice without seeing the patient but can clarify things.

 

Also, when he gets old enough that other people know about his illness - remember to not let anybody put him down for his medical troubles, that often is a big deal in the teen years.

 

Cheers on a great first appointment.

[grays]

Thanks, G. I think for now, I’m gonna shove this back into denial until we get test results.

 

This keeps making me think of that quote, to have a child “is like having your heart walking around outside your body.” Sigh...