Heart Problems and CMTC - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 01-26-2010, 02:24 PM
missy missy is offline
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Here, Birth to Three is called BabyNet and was a wonderful thing for my son. They were so easy to work with and made the transitions easier when he needed other treatments... they hooked him up with speech services and occupational therapies and such. So, if Becca needs to transition to those other services, it's good to work with Birth to Three.

And, I agree... we would like to know the relationship for other families, but you do have to deal with each issue as it comes forth.

Dont' forget to send in updates!!

Missy
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  #12  
Old 02-03-2010, 11:24 PM
abatie abatie is offline
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Okay so now today I got another call from Mayo saying we need to come back in March. They told us a week ago that we didn't need to come until July. They are talking about a GI specialist and I don't know why. She needs to have a chest x-ray and that wasn't supposed to be until March. I am so confused and can't get any answers from the secretary that calls. Anybody have any ideas on why this stuff would keep changing? What would GI have to do with CMTC?
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  #13  
Old 02-04-2010, 12:27 AM
missy missy is offline
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You know, I met a woman just today who had a child born with arterial septal defect and we were comparing GI doctors here! Her son had an extreme case of reflux, as well as the heart defect. I have no idea if they were related or not....

I will say, though, that it is never a good idea to get medical information from the office secretary or the appointment scheduler. Rarely do they have information (and, frankly, if they did, they would have probably violated your privacy). If you need clarification on why a procedure or an appointment needs to be altered, ask to speak to at least the nurse.

Missy
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  #14  
Old 02-04-2010, 03:38 AM
abatie abatie is offline
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I guess I didn't want answers from the secretary but I wanted a number of someone that I could call to get the answers that I need. They had called us back two weeks ago to come back last week and then the doctor didn't really know why they called us to come back. I think there must be some disagreement between the doctors on treatment (although I don't know this for sure). The cardio. didn't seem to think any further tests needed to be done for six months and now there is a chest x-ray scheduled for March (something doesn't add up). My mom is a nurse and she said the GI might be to run some other special test to look at her heart. I can't remember what she called it.

Nine hours one way in a car with a baby is a long time. I would like to just know that we are going for a purpose this time rather than get there and have the doctors not know why we are really there. Especially since we are scheduled to see doctors we know nothing about.
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  #15  
Old 02-04-2010, 04:33 AM
abatie abatie is offline
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I think there is something up with my doctors. I did some research on Mayo's webpage on one of the new doctors. He is a pediatrician but one of his major interests is vascular malformations. He is also interested in long-term care cases and orthopedic issues. Seems like it really matches Becca.
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  #16  
Old 02-04-2010, 12:19 PM
missy missy is offline
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I thought the GI might be to run some special test, but couldn't imagine what it might be.

Would it be possible to get a chest xray in town and have the results sent, and avoid the long car ride?

Missy
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  #17  
Old 02-04-2010, 12:33 PM
abatie abatie is offline
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The chest x-ray could be done here but it is scheduled during the rest of these appointments (a four day stay).
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  #18  
Old 02-05-2010, 10:58 PM
abatie abatie is offline
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I finally got to the bottom of the appointments in March. They were scheduled my our dermatologist. I did some research on the pediatrician the first appointment is with. His interests are in vascular malformations, orthopedic issues involving limb size differences, and long-term patient care. Maybe this is a good thing!
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  #19  
Old 02-06-2010, 12:03 AM
missy missy is offline
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Excellent!

That happened to me once.... my regular physician scheduled and then REscheduled some appointments and I had no idea when to be where. Glad you got to the bottom of that!

Missy
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  #20  
Old 02-26-2010, 12:58 AM
abatie abatie is offline
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Another blow today. Birth to Three was doing a communication eval. today and Becca was suppposed to respond to sounds. She made no response to anything-dropped objects, rattles, slamming doors. They have scheduled another eval. We then came home and tried the smoke detector - nothing. I wish we could get to the bottom of what is going on with her.
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