Hi Kristen,
I don't know anyone with this diagnosis, but I would like to suggest that you insist on being referred to a German Pediatrician or Specialist. If the diagnosis was from an American MTF, then I must insist. Not that the Doctors there are not well trained, etc...but they are in no position to offer you specialized care, because of their primary mission and the Pediatrics dept is just overloaded, since we have really seen a baby boom since about 2003.
I take my 2 year old to a German Pediatrician exclusively. Call Tricare and they can give you the website where you can search for local providers that speak English. You can then Tell (Not ask) your american Pediatrician or Primary Care Manager to refer you off base, due to your extreme concerns regarding your child's diagnosis.
I have read that the faster you start getting your child help for those type issues the better she will learn to adapt and function. So...I do not want to sound paraniod, I just have experience with the U.S. Healthcare, and not getting treatment fast enough, and it ending up causing WORSE problems later.
My horror stories include being seen at the ER for severe abdominal pain, and then being told I was pregnant and to go home and rest-and return the next week if I still felt badly. My instinct told me to call a German Doctor and get seen right away....I did that, and the doctor told me to come in ASAP--she saw me immediately based on my symptoms, and performed a THOROUGH exam (Which the ER Doc did not do), and learned that I had an Ectopic Pregnancy that was about to burst my tube. I was admitted to the German hospital 1 hour later, and had surgery the same night. The Surgeon said that I could have died had the tube burst..and that best case I could have lost the tube altogether (And I want more kids).
Another story for you: My daughter kept getting these "rashes" on her genitals. I took her into the Pediatrics dept about 4 times over about 6 months....and they would prescribe salves, and sometimes medication, etc....but always called it a "VIRAL" type rash, etc....So, the last time she got this, it ended up as boil-like sores all over her genitals, and she was miserable....I called Tricare and explained my experiences with the American Pediatrics Dept., and they referred us off post right away. The German Pediatrician I saw told me that she was very concerned...she did a Culture and Blood work the same day (Which the American Docs never did). She went ahead and prescribed antibiotics and antibiotic cream. When the blood work came back, it was a severe STAPH infection....The culture took a bit longer-but showed that it was NOT resistant, so thankfully, it was not the dreaded MRSA that most antibiotics cannot cure.
I look back on it all now and I am very concerned that my 2 year old has had more antibiotics that I ever have in my life...and all because the American Docs. are too busy to dedicate the time to really diagnose problems effectively. The other problem is that since they are so busy, we saw about 3 different Docs in Pediatrics alone--making it impossible for them to track her past issues, etc...and follow her health. Again, I am NOT blaming those doctors--they have a tremendous strain with all the soldiers coming through there--and on top of that--all their spouses and children, who they said seem to be baby-booming again :) These American Docs are trying their best to deal with their workload, and some of them are the best I have ever met...but when it comes to your own health-and especially the health of your children, you really should find the "right" doctor..even if it means insisting on an off base referral. I feel better now necause my daughter has 1 doctor who knows all about her medical past, she tracks it all in her baby health book, and is always readily available to see her if my instinct tells me something is wrong.
Off base docs will usually process the Tricare claim for you and then whatever is not paid by them will come to you to be paid--as an Active Duty family member actually, you will usually pay next to nothing...
I hope this helps...as you can tell, I am rather emotional about healthcare over here for us Americans---so, take it from me...if your GUT tells you something needs to be done, you are RIGHT. Insist on a referral.
N. in Kaiserslautern