I am the mother of a three year old son who has been diagnosed with williams syndrome and cardiomyopathy. he was diagnosed at the age of two months with cardiomyopathy and at seven months with williams syndrome. i am curious to know if any other person in your data bank has been plaqued with this disorder. to date, i have contacted the williams syndrome assoc. and to no avail. they have no one on record as having williams syndrome and cardiomyopathy(both being genetic defects). i just want to really know what is going to happen from now. he has a slight obstruction from the time he was two months old and it has just slightly gotten larger. he is currently under the care of cardiologist dr. su chen through cardinal glennon childrens hosplital of st. louis. unfortunately, i am concerned because he is on verapamil and, no matter what, if he is home for the day, which my kids have because of severe snowfall in my area, i can tell only after an hour or so after play he is wheezing almost, and almost out of breath. i wonder if he is destined for heart failure, and i'm sure you've heard this from other parents, i just want to know lhow long he might live, and what our options are. ANY help you could provide would be greatly appreciated!!!!!!!!!! i lost one son before him (less than a year before but he died from my older son picking him up during the night and dropping him, in which he died from a sub-dura-hematoma). if you have any questions for me. please do not hesitate to ask. i need some help here that i feel his cardiologist is not telling me. i also have a doctor (who i am changing as we speak because my current pediatrition has no inclination to check further than a yearly checkup) i want to make sure my son has everything that is avaILABLE to him that can be available. i just am finding things out aBOUT this that i had never known about. please help!!!!!!
Dear Lisa, thank you for your question. I will try to provide you with additional information regarding Williams Syndrome, but I am unable to make diagnoses nor predict prognosis in this forum. Williams Syndrome is a genetic congenital cardiac disorder that is caused by a supravalvular (above the valve) aortic valve obstruction. Typically, this disorder is similar to congenital aortic stenosis where the obstruction occurs at the valve level due to fusion of the valve leaflets. Other medical problems tend to accompany Williams Syndrome including disorders in calcium metabolism, gastrointestinal problems, narrowing of the pulmonary arteries, and joint problems. Cardiomyopathy is not known to primarily be associated with Williams Syndrome, but it could be a coincidental problem. I understand your concern and your search for answers to your questions, but I cannot give you specific information in this forum. However, we do have a number of excellent pediatric cardiologists here at the Cleveland Clinic who would be happy to evaluate your son and who may be able to answer your questions. Dr. Daniel Murphy and Dr. Mary Ann Kichuk would be the two cardiologists I would recommend. You can reach Dr. Murphy or Dr. Kichuk by calling the number listed below and asking for their offices. Overall, I think your son would benefit from a thorough reevaluation, during which you would have an opportunity to have your questions answered.
I hope you find this information useful. Information provided in the heart forum is for general purposes only. Only your physician can provide specific diagnoses and therapies. Please feel free to write back with additional questions. Good luck.
If you would like to make an appointment at the Cleveland Clinic Heart Center, please call 1-800-CCF-CARE or inquire online by using the Heart Center website at www.ccf.org/heartcenter. The Heart Center website contains a directory of the cardiology staff that can be used to select the physician best suited to address your cardiac problem.
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