RoDear Tamy,
I am very sorry to learn about all the difficulties you are facing. I also do not live in the USA (I am in Chile), but here treatment seems to be very similar to treatment in the USA. This is also true for prenatal treatment (including CVS/amnio). Perhaps you could try to find out whether you can send CVS samples to another country where they are able to do the proper analysis (such as England, Germany, etc).
I assume you live in Hungary (because I read a previous message). If this is true, I have a piece of information that might help you. I am not sure if you heard about the “Consensus statement on 21-hydroxylase deficiency from the Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology.” (you can download the consensus from the following website: http://jcem.endojournals.org/cgi/content/full/87/9/4048). This consensus was prepared by doctors from all over the world. The consensus explicitly says that although prenatal treatment remains controversial “prenatal treatment has been advocated for fetuses at risk for classic CAH.” I checked the names of the doctors who wrote/endorsed the consensus and, fortunately, the name of Janos Solyom-- a Hungarian doctor-- is listed. I did a search on the internet and found out that there is a website with his contact info available at
http://www.nkth.gov.hu/research/researchers_projects/projects/topic_75.html
Perhaps you already know him, but if you don’t it might be a good idea to get an appointment with him.
I checked another article that reports the results of a survey circulated among the members of the European Society for Paediatric Endocrinology (ESPE). According to this article “Prenatal Diagnosis and Treatment 134 of 141 ESPE members who responded routinely inform all CAH parents and patients about the possibility of prenatal diagnosis of CAH and treatment. 37 out of 125 centres know of a regional or country-wide central guideline and database for prenatal CAH treatment. In 57% of the centres prenatal diagnosis and treatment are routine.” This proves, I believe, that in Europe there are plenty of centers doing prenatal treatment. Two Hungarian centers are members of ESPE (Department of Paediatrics, Semmelweis University, Budapest, and Endocrinological Unit, Department of Paediatrics, University Medical School of Debrecen). In any case, I guess that being an ESPE member does not guarantee that they know what they are doing.
You can check the abstract for this study at:
I hope this information is useful. Please keep us posted. Good luck!