Pissed at GI

hdall0807 · January 2014

So I have been lurking and starting to comment. So here is a little intro. My daughter will turn 1 on march 1. She is allergic to milk and soy (possibly more). She is also "FTT". She was 5lbs 15oz at birth and was very healthy.
- also everyone seems to answer a question about returning carts?? I have no idea what that means' sorry.....

So when my daughter turned 6 months we switched to formula. After 10 days we found out she was allergic to dairy and soy. (Talk about mommy guilt over stopping breastfeeding).

So at that same time my daughters growth slowed significantly. She would lose a few oz and then gain a few back or not gain for weeks. She went to an endocrinologist and nutritionist in nov. they said she was just tiny but fine. Her intake is not the problem as she eats a lot.

Now her weight stalled again and she keeps having allergic reactions to unknown things. So we got sent to an urgent GI appt and allergist. So the GI appt was yesterday morning. The entire time the GI said she thinks My DD is perfectly fine just small. She said its not GI or allergy related. She referred her to a geneticist "to rule out any other syndrome just in case, but don't worry i dont think she is a dwarf or anything". Which nobody was saying she was so it was a weird comment. So her geneticist, allergist and all blood work will be done Tuesday.

So I get back to work and I can see my daughters chart online. Her ENTIRE report is about how my daughters facial features are small, she is pixie like, triangular face, "looks nothing like her mother or her father." She continues to say that its not a GI thing. She keeps saying she has characteristic of Russel silver syndrome and mentjoned that syndrome 3x. So I looked it up and it's primordial dwarfism. The ENTIRE time we are there she tells us she is normal and "don't worry she isn't a dwarf" when that is what her whole report is about.

Even if she does have dwarfism that is fine (although I really don't think she does). How dare she sit there and lie to us. I am calling today when the hospital opens to talk to her pedi and then emailing her GI.
Sorry I really needed to vent! It's 2am and I'm pissed off

myatala · January 2014

Saying one thing to you and then completely contradicting it in the report is just awful. I would be angry, too!

I hope you get some answers soon!

ASmallWonder · January 2014

That's not professional. Anything that it's a chart should be explained to you while you're there ESPECIALLY because you can view the chart. Information like that shouldn't be read without the support of a person who can explain it to you. At the very least she should have told you that the report would indicate a possible syndrome but it sounds like she was adamant that it wasn't an issue and then to read it...I'd be pissed.

LoveActually4 · January 2014

Are you supposed to be able to view the chart?

hdall0807 · January 2014

Yes I can view the chart. It's encouraged there actually, you get a handout about it everytime you go. I like to see her labs and things. Also her allergist encouraged us to get access so we can message her through it whenever we needed. Then they respond that day and it comes like an email.
I think we can view her entire chart until age 12, then very limited until 18 and then obviously nothing

hdall0807 · January 2014

I really don't think she was writing it as an "oh this might be a concern so we should send her to geneticist". It definitely did not sound like that at all.
She kept commenting on her facial features and how example A is a characteristic of Russell silver syndrome, example b is a characteristic, etc. it's not even like it was saying oh she may have a syndrome. She kept using the specific name of it. Clearly she was thinking it when we were there if she was comparing her face to ours and payin that close of attention to her face. Also that she specifically said dont worry she isn't a dwarf or anything.

And if that is what she has that is completely fine. We just feel so lied to by her. If Lexi does have any GI follow up it definitely won't be with her.

My mom thinks the GI had the "We are the mayo clinic we need to find rare disorders" mind set

LoveActually4 · January 2014

If you're supposed to have access then I would cAll the GIs office and explain that the information you see if the chart is completely contradictory to what you were told in person. Ask for a follow up appointment, print the letter and have the GI clarify the information.

ToastieSimons · January 2014

The GI may have written that in the chart to ensure than your health insurance covers the cost of genetic testing.

When my son was getting tested for everything, they said he had syndactyl toes (webbing between, which he doesn't) to ensure the insurance covered the testing.

They won't cover testing without proof of need and lots of times they have to submit the reports along with the request for authorization.

LaurelBee · January 2014

I second @loveactually4. But I would start researching new Drs bc my trust in that particular Dr would be gone. I'm sorry you had to read that about your sweet baby. We're here if you ever need to talk about it.

hdall0807 · January 2014

Thanks everyone. She probably will not even need to return to the GI. If she does though she will definitely not be returning to that one

wiggyslilsis · January 2014

I would call for clarification. Like another person said, it could be insurance related but if that is the case then the doctor should have told you since you can access the records online.

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