Hello,
My daughter is 14 and was diagnosed on 6-1-07 with ET. A routine physical with blood work & her platelets were 1 million. Up to this point she has never had any illnesses. (wonder how long she has had this). Her pediatrician sent her to a pediatric Hemotologist/Oncologist. They did platelet count studies on her for 2 months and her levels stayed relatively the same never going less than 800,000. They scheduled a bone marrow and marrow biopsy and said that she is positive for V617 mutation and negative for JAK 2 mutation. Now that I know that this disorder is very rare for children and usually is only found in middle to elder age this is very bothersome to me. I would like to know what are the ages of some other poeple in comparison th my daughter...if you don't mind sharing this info with me. Her doctor has been wonderful so far giving us information. (I will list all info in the end of this blog). He is doing some more in-depth testing on her. He has now ordered platelet aggrigation studies & a PFA-100 to further investigate her ET. So far his suggestions are that she is a "low-risk" patient because of her age...even with knowing this we are leary and cautious. He does not want to put her on any medication at this time. The med's that I have read about sound like they have adverse side effects and cause this to progress into other things. I am looking into homeopathic remedies and hopefully will be able to find something out there that is specific for lowering counts and clot prevention. There is only the Mayo Clinic so far that I have found that specializes in ET...We will be taking a trip there to just for educational purposes and I will post my info about my findings when we get back so that everyone will get more insight regarding this disorder. I do understand that medically there is no cure for ET...BUT, however, I do believe that there is power in prayer. I will be praying for everyone who is in this same situation that we are. Good luck everyone. Please write me back.
Rebecca