Question
My 5 year old daughter is in the process of being diagnosed with EDS.  She goes to clinic on May 14.  A month ago she was reaching for something on the floor and she screamed her neck "popped out" and she had "jumping jelly beans" in her hands and feet.  We ultimately saw a cervical spine orthopedic surgeon and he performed the C1-C2 fusion.  He said he had never had to perform this surgery on someone so young.  He does work with other people with EDS and this surgery is usually done when people are older. Both the Neuro-surgeon and the cervical spine expert were "shocked" that she has made it to 5 years without a catastrophe.  They said that the ligament holding the two vertebrae together wasn't at all.

I want to know, what else to expect.  I do not know what type she has, but I do know that it is very severe. What about the rest of her spine?  If C1 and C2 are not holding and she is having multiple dislocations throughout her body a week, what is next?  

I know that we have to live day to day, I just don't want to be hit with another truck.  I would like to know what to expect and I don't want to have to wait until May.

Thank you,
Amy

Answer
Sorry to hear about your daughter's ordeal.  I can't offer medical advice, particulary with fusions as I have not had one.  

I would recommend seeing a specialist.  The best doctors for EDS, in my opinion, are Dr. Nazli McDonnell at NIH in Baltimore, MD and Dr. Clair Francomano, also in Baltimore.  Dr. Francomano is in private practice, but Dr. McDonnell is a researcher.  

Dr. Mark Lavallee is in Indiana.  He is on the medical advisory board of the Ehlers-Danlos National Foundation.  Also on the medical advisory board is Dr Peter Byers in the Seattle area.  I've not seen either of these doctors personally, but they are both very knowledgeable about EDS.  Dr. Byers is a specialist in the Vascular type.

I also recommend joining an email support group for EDS to learn more and talk to other parents of kids with EDS.  There you will have access to many supportive people who are going through similar experiences.  The two most popular groups are CEDA and EDSers.  Go to http://www.yahoogroups.com and look for CEDA and EDSERS.  CEDA tends to be a much higher-volume group and produces a lot of daily messages, so I recommend joining the digest version or starting with EDSers if you don't have time to read a lot of email.

Other sources of EDS Information:

http://www.edstoday.org
http://www.ehlersdanlos.ca/
http://www.ednf.org
http://www.ehlers-danlos.org/

-Barb