- CASE FILE
Our 14 yr old daughter Ruby Started easy bruising, lengthy bloody noses, lack of energy, dizziness with minimal exertion and heavy periods.
ABOUT THIS CASE FILE
We are the parents of a 14 year old girl in the care of Mayo Clinic in Rochester Minnesota. My daughters name is Ruby, and last December she started easy bruising, heavy nosebleeds, Lack of energy, tires easily and very heavy menstrual flow. I am emailing you tonight as my Daughter has been under the care of several Hematologists recently, first at the University of Iowa, and most recently at the Mayo clinic. My wife and her are up there today and tomorrow getting a sleep study done, to see if the tiredness is a symptom of not getting good sleep at night. A brief history is as follows.
Went to her Pediatrician when the symptoms started occurring in December of 2018, we were referred to the University of Iowa hematology dept. She went through many blood tests over the next month and a half and was released as they could not find anything in the blood work that would cause the issues described. After exhausting this resource, we were told to come back in 6 months to see what had changed. We were also told to see her ENT to see if any blood vessels needed cauterized. We did this, and she had 2 areas cauterized, but the ENT didn't think they would be the source of 5-7 hour nosebleeds. We went back to her pediatrician and asked for a referral to the Mayo Clinic. On the initial visit, we saw a Hematologist, and a Gynecologist. More blood tests were taken, and they took great steps to try and figure these symptoms out.
For the nosebleeds and bruising she was given Premarin cream to put into her nose for the first week of every month to help build up the wall thickness of the tissue, and was told to take Vitron C as her Iron levels were really low, most likely due to almost daily nosebleeds, and heavy menstrual cycle(1 pad per hour). She was also given an Iron infusion treatment to help. These treatments did stop the nosebleeds, but the easy bruising continues. By easy bruising I mean to say that a blood pressure cuff will cause a really nasty streaking bruise on her arm. A light tap on the should will cause multiple bruises. Scratching her arm causes bruising.
For the heavy menstrual cycle, she was given birth control pills to help with regulating her menstrual cycle, and told to not take the sugar pills at the end of the pack, but to start up another monthly pack. This did not stop the heavy menstrual cycle, so we were up again 3 weeks ago to Mayo to get an IUD put in.
I am seeking out advice or other options, as my wife was told by the Mayo Clinic hematologist that there was not much more to be done from a hematologist standpoint, and we were told by a pediatric PA that they wouldn't know what to do., and this could just be who she is from now on. This is rather disheartening as she was a healthy, happy, active 14 year old girl who played softball, soccer, ran track and cross country, and she can now do non of those things as she gets fatigued and out of breath with minimal exertion. I am willing to share all the test results with you, but I feel that the Mayo clinic is close to giving up and we are not sure where to turn to get advice. I understand that she is not under your care or even the care of your clinic, but we are extremely worried about her, and want to get her back to her normal, happy, healthy self.