I have a daughter who is now 12 that has 47,xxx. We found out that Lilly had triple x when she was 18 months old. We searched and searched for a specialist who could tell us anything about triple x and what lay ahead for our daughter. After several years, we found Dr. Carole Samango-Sprouse. She has been a god-send and everything she told us was right on the money. She specializes in sex chromosome disorders (i.e. Fragile X, 47,xxx, etc.) She has written numerous articles and is very well-known and respected in her field. I can’t say enough about her! She evaluates Lilly every year and tests her to see where she’s at grade-wise, if she’s falling behind, if she’s picking up new strengths, etc., and then she helps tweak her programming (i.e. how she should be taught) which is what we then use to go back and fight with the school over. Dr. Sprouse has helped us immensely with Lilly’s case conferences, IEPs, etc. The school is unable to refute it because there are no other experts out there (there may be more specialists familiar w/it now, but Dr. Sprouse has been studying/tracking 47,xxx girls for 20+ years). We started seeing Dr. Sprouse when Lilly was 9 – she does clinics all over the U.S. and abroad. Lilly was non-verbal at 5 and the school offered 30 minutes of speech per week. We fought and fought for more time and filed several due process hearings, but with Dr. Sprouse’s expertise and guidance we were able to get 4 hrs a week of Speech therapy (which is unheard of) and it has helped tremendously. Lilly is speaking fine for the most part and she is still getting 4hrs a week now that she’s in 6th grade.
