Hello my grand daughter is now 4 was old. At three days old we were called to rush to the childrens Hosp to do more blood test after a failed Newborn screening and they practically tortured this little one to get blood, the mislabeled, could not find vain and then mixed up test and order the wrong ones at the hosp. Then we were refereed to a Metabolic Specialist at another major children's hosp in our city and when we tried to get an appointment they said we are not accepting new patients. We were so confused..we had her regular peds followup after birth and was told she definitely had Galactosemia but don't know which one. Was refereed back to the Children's hosp with the specialist but again were told yes we have her blood and records and referee but are not taking new patients right now. So we were told to call around and all major children's hosp with a genetics specialist are not accepting new patients....what are we supposed to do here???I even called to A major university a couple from us and had her records sent and was told they will let us know if they will take the case but didn't here back...so confused...this is rare and only a few docs even have the know how and the one in our city won't take her.....at a loss...
These are true stories and messages from moms I have received since I began this journey researching DG in 2008. Sadly I didn't start foldering the messages til 2012 but please see that many are in the same boat as you-confused and with many questions. The post is not to answer these questions specifically but to post to record the issues and questions for the public.