lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
My son with Down syndrome left school early last week because the nurse was concerned for him. He had blue lips and fingers.
My son's care provider took him to the doctor and the doctor said it's nothing to worry about. An EKG was normal. She said to document any further incidents and she'd see him in a month.
Well, once I learned of all this I wasn't satisfied. I felt he needs an echocardiogram and a visit with a pediatric cardiologist. He was a "blue baby" with pulmonary hypertension when he was born. He checked out okay cardiac-wise as a newborn, but hasn't had a full checkup since then (he's now 10).
I called the doctor's office Monday at 9 am and told them I'd like them to help me set up an appointment with a pediatric cardiologist just for peace of mind. Well, you'd think I'd asked for the moon.
They said they'd get back to me. I waited and waited by the phone all day. I called again. "Oh, we'll be sure to get in touch by the end of the day."
I didn't hear from them. I left a message with the answering service: "I did not receive a promised call at the end of the day."
Today, at 11 am, they still hadn't called. I was fuming. I called and said, "I've been waiting a day and a half for a promised phone call. I want a call-back immediately." The receptionist was very huffy in her attitude when I said this.
Anyway, I waited three more hours before the doctor FINALLY called me back. She wanted to know what the big deal was. His EKG was normal. She acted like cyanosis is a normal, no-problem event. I asked her, "Why is it so hard for you to just make a referral?" She responded, "And why do you think your son needs this? I don't have a good enough reason to refer him for an echocardiogram." (Or something like that!).
Finally, she snapped at me and said she'd work on it and hung up on me.
I guess I damaged her pride.
Isn't it wonderful how some doctors will put their pride before a child's life??
I have utterly no respect. I tried to get on her sympathetic side by telling her, truthfully, that I've been crying for three days about my son and I just want peace of mind. Hmpph - these people don't know what it means to be human sometimes.
There, my latest sob story. I have a sick, nauseated feeling in my guts because of her attitude and my worry for my guy. There just seems to be no justice for anything.
I had a "gatekeeper" ruin my life once (by refusing to let me see a doctor when I had a bull's-eye rash on my pregnant belly) and I don't need another one doing the same to my son.
Thanks for listening! - Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Sorry you had to go through all that. Yes, it is enough to make a person crazy.
I think our healthcare system is in a melt-down situation. There are many reasons for this, including the explosive growth of medical technology, without the $$$ to pay for it. Doctors see 30 patients a day @ 15 minutes each, b/c that's how many they have to see to make a decent living. It's retail medicine, aka McMedicine. Everybody loses.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
That is just sickening!
I know ther is some website you can go to to rate any doctor--I'm sure someone on here knows what that site is.
I would seriously consider giving that doctor a really harsh rating.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry this happened. Hope your little one is taken care of soon. Glad he has a caring mother watching over him.
Now,... remember this....
Don't let people of a lower caliber get your goat.
I as of late don't blame all of the doctors. I think most of them ,even though they will not admitt,it have finally woke up . They have really sold themselves down the river.
And for what? To help pay for the mansions biult by highroller money Guys. And They demand profit.The more I think about it,the happier I am I am not a Doctor.
They have got too feel like peices of hot dogs being sourounded by hungry ants. But that is no excuse to behave like the pinhead You saw.
I had a N.P. tell Me I was responiable for My own health. What She really was saying was do not take no for an answer. You know Your child better than Doctor,They should be listening too You. (the sad thing is they know it,but they are caught) Sad things happen when You sell out.
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Thanks for the replies.
CathyMary, there are no pediatric cardiologists in my area, but one comes from a larger city nearby twice a week.
I tried to call them directly and they said that they needed the primary doctor to refer my son to them. Otherwise, I wouldn't have bothered with the primary office at all.
It did help to tell my story here. I will be rating the doctor (once I get her last name!).
I was disappointed this morning when my husband told me he thought I'd gone too far with my insistence on this. He said there must be a good reason the doctor wasn't worried about our son. I couldn't believe my ears!
I said, "How can you say that after everything we've been through?" I said to him that it's not just in the area of Lyme disease that doctors have failed this family. The ob-gyn practice I was with when I was expecting each of our sons made many mistakes that cost our family dearly.
I will update as things change. Hopefully, I AM just being an overprotective mom!!!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
I have lost all faith in doctors after this. I think you did the right thing by demanding what you thought needed to be done, it isn't her child that is blue.
Sometimes I wish I could make the doctors feel the pain they are so nonchalant about.
Posts: 743 | From New York | Registered: Apr 2009
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