Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 I personally would go and see what info they have to offer. I think you'll be shocked in the coming months, and years, how few doctors know how to deal with DS...let alone MDS!! I've had a pediatrician basically tell me I wasn't doing my job as a mother, because at approx 4 yrs of age, wasn't talking much, and he was still wearing pull-ups (apparently she didnt understand his bowel disease either!!) Needless to say, we switched ped's quick! I get soooo tired of going into offices and having the doctors or nurses ask him to do things he can't do very well, and then get perterbed with him~ isn't his chart right in front of them!?!?!?!?! There are tests that people with down's should have done periodically, that the majority of people don't... example, regular thyroid checks, and a check of the cervical spine at a certain age...etc.... ALL of which by the way, doesn't have, because I can't manage to get a pediatrician who treats him like he's got Down Syndrome... sigh. I wish we had a DS clinic... even if it was an hour away, because even if you just went once a year, I think you could get valuable information and care from them!! ~ANGEL~ Mom to 11 Mosaic Down Syndrome/Hirschsprung's Disease Lance 16, Tyler 12, 9 Jaeda 8 & Shayne 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 How true Angel! When we take Adam in for his check ups, the doctor runs through a list for all of the things a typical two year old can do. Can he use two to three words in a sentence? He can barely say three or four words all together. Potty training will be the next issue. My granddaughter 23 months is potty training now. There is no way Adam is ready. I don't think he would understand what we wanted and he can talk to tell us he has to go anyway. It is frustrating, isn't it? Donna - Gram to Adam 2 mds -- Re: DS Clinics?? I personally would go and see what info they have to offer. I think you'll be shocked in the coming months, and years, how few doctors know how to deal with DS...let alone MDS!! I've had a pediatrician basically tell me I wasn't doing my job as a mother because at approx 4 yrs of age, wasn't talking much, and he was still wearing pull-ups (apparently she didnt understand his bowel disease either!!) Needless to say, we switched ped's quick! I get soooo tired of going into offices and having the doctors or nurses ask him to do things he can't do very well, and then get perterbed with him~ isn't his chart right in front of them!?!?!?!?! There are tests that people with down's should have done periodically, that the majority of people don't... example, regular thyroid checks, and a check of the cervical spine at a certain age...etc.... ALL of which by the way doesn't have, because I can't manage to get a pediatrician who treats him like he's got Down Syndrome... sigh. I wish we had a DS clinic... even if it was an hour away, because even if you just went once a year, I think you could get valuable information and care from them!! ~ANGEL~ Mom to 11 Mosaic Down Syndrome/Hirschsprung's Disease Lance 16, Tyler 12, 9 Jaeda 8 & Shayne 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 see...now I'm feeling the urge to start seeking out a DS cllinic or at least a DR within my HMO... 's 11 and his thyroid has NEVER been checked... oh the list goes on.... ~ANGEL~ Mom to 11 Mosaic Down Syndrome/Hirschsprung's Disease Lance 16, Tyler 12, 9 Jaeda 8 & Shayne 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 Hi Antoinette, My son Caden (1) visits the Minneapolis Children's DS Clinic every 6 mos. They did not do any genetic testing, our dr. said it doesn't really matter what % of cells our MDS, we know he has it so let's just focus on treating him. He is the one who gave me the contact information for our school, he checks Caden's thyroid every six months, his hearing and this last time he recommended he see an eye doctor just as a precautionary measure. Our regular ped. never checks any of this on Caden nor does he ask if he has been checked, so I feel very good about the care our DS dr is giving Caden. Last time he also did some testing with Caden, just to see what he was and wasn't doing. For us it is another opinion and dr looking out for our little guy. GP/Peds. I really don't have confidence in--mainly because of my own experiences with them. Hope that helps. - mom to Ella(3) and Caden (1-MDS) DS Clinics?? HI, My family physician has referred us to University of Michigan: Down Syndrome clinic since he doesn't have much experience with DS let alone MDS. It's over an hour away, so I don't expect to attend there often. Has anyone visited a DS clinic before? What should I expect? We just had a local PT eval and blood test of 2 out of 6 cells showing positive for MDS. I figured they would do more of the genetic testing but not sure what else. Tessa is doing well. Still feel like we are waiting for " another shoe to drop " . Thanks. I've appreciated all your honesty and information as we are just learning about MDS. Antoinette (Tessa 1mo.) Antoinette Sandum 7295 Pin Oak Circle Augusta, MI 49012 Quote Link to comment Share on other sites More sharing options...
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