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Old 09-08-2006, 08:48 AM   #1
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I am so tired of doctors

A little background. My son started to sound congested like he had a cold a little over 2 months ago. He is now 7 and a half months and we are still dealing with this. I hate that they can't give us any answers!

We are going down to John Hopkins Hospital for a Cystic Fibrosis test. This is our second. Our new Pulmonologist at Hopkins doesn't trust the original CF test done at Winchester Medical Center. Ugg. I was really hoping that she could help us with answers but so far she seems just as unable to help as every one else. At our inital apointment with her on Wednesday she orderd a chest x-ray. Since DH missed the first one and I knew what was comming I suddenly had to use the bathroom. I left my DH and my son to deal with the x-ray tech alone I feel a little guilty now but DH has missed all the blood draws, the x-rays and everything hard. That was the first time he had to be there for something. He also missed our first sweat chloride test . . . he is comming with today.

I knew that being a mom would be a challenge but this seemingly endless maze of doctors and medical mess is starting to get to me. I feel like this could go on forever with no answers. Afer this test she has like 2 or 3 more ideas what to test for. Im glad she is taking it seriously. His breathing is a concern, and now she says he has failed to gain weight for so long that she conciders him a case of Failure to Thrive But I just want some answers, yet it seems like the further they dig the more questions we have.

Thanks for letting me vent. I guess I just needed to get it out, Im also curious if others have had experences like this? Do you just learn to go with the flow? do you learn to negotiate all the medical talk better? I allredy feel like Im getting good at reading an x-ray
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Old 09-08-2006, 08:56 AM   #2
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Re: I am so tired of doctors

I'm sorry mama! Trust me, I've been in your shoes 10 fold.

My son has been tested for CF four times!! He's also been FTT since birth, and has been hospitalized well over 6 times with NG tubes (feeding tubes), etc.

They are still trying to figure out what is totally wrong with my son. That doesn't give you too much hope, I know! BUt, it sounds like you've got great Dr's that are taking this all very seriously.

Hang in there mama, hopefully all of this torture (tests) will pay off!!
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Old 09-08-2006, 09:04 AM   #3
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Re: I am so tired of doctors

its never fun. You DO get used to it. And you get used to not having answers. We see a Dr twice a week most weeks, some times we are there every day, sometimes as many as 3 docs in a single day. We've had almost a dozen spinal taps (maybe a dozen- you lose count) and oh I dunno 50 blood draws? catheters, skin scrapings, several x-rays, a few sweat tests, dozens and dozens of throat swabbings and nose swabbings, IV's and shots of abx.
We've seen 3 ENT's, 2 cardiologists, pulmonology, optometry, orthopaeditric surgeon, neurology, physical therapists, infectious disease specialists, a few immunologists, allergy doc, and I'm drawing a blank on the rest.

I'm sorry you are going through this. I hope they can find some answers soon.
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Old 09-08-2006, 01:30 PM   #4
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Re: I am so tired of doctors

Thanks for the suport. Going to Hopkins outpaitant center was so diffrent from any of the hospitals we have been to so far. And this test was similar but much more involved than the one in winchester. Very intresting.

It was also nice that DH was with me. He has missed alot of the tests and doctors visits being at work. He finaly got to see why this is so stressfull. He actualy heald Theodore during the tests this time.
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