Hi, so sorry to hear this, a big shock. which country are you in? Will be praying for you. If it ws me i would also go to any christina healing sites and ask for healing, but I am a christian, you may or may not believe in God healing today, hugs alison

whoops, i meant christian healing sites, such as bethel skype healing rooms, or sanmarcos healing rooms, they put you on prayer team lists so many pray for you, will also pray over skype with you, seen many healed of all sorts.

look on www.mpdvoice.org.uk is very good

Yes it was a big shock and very scary at the same time. I do believe in God and he has helped us through all of this I have lots of people praying for us.

Thank you for your info :-)

I will be praying for you also.... God still heals today, never give up, he will never leave or forsake you, alisonx

WOW, so sorry to hear...that is so young for PV. I've heard of 16 year olds with it but never as young as 3. Did you get a 2nd or 3rd opinion on this....that's the first thing that popped into my mind....its just so young and so unheard of. If I may ask...how did they come to this diagnosis? What testing did they do? Is this diagnosis coming from a hematologist? I wish you the very best and will be praying for an answer for you and your son. God bless! Sue

I would try to get a second opioion. I was diagnosed with PV a few years ago. I am female and in my 20s. My new doc says she thinks I might not have it. She isn't sure what I have... but I would really get some more answers from different doctors.

My brother was diagnosed in 2009 at 20 years old. He developed a blood clot in his liver from the Polycythemia and was diagnosed with Budd-Chiari Syndrome as well.

I too believe in our Lord. He gives us a mind and many other abilities. Based upon what you said about being in a small town, Ad they dont know how to treat him, I would be looking for a childerns hospital who has treated young children. The Mayo Clnic, Cleveland Clinic, Johns Hopkins, and other such hospitals have more experience with rare cases. Simply put, just as you don't want a lawyer to learn on your case, don't let anyone learn on your child. Incidently, most of these large institutions have endowments, where money is not necessary. Many even have Macdonald houses for the parents. Bottom line, don't be passive, be aggressive about finding the best treatment for him. Good luck, and God Bless.

If there is a larger city within a reasonable traveling distance, especially one with a cancer center, make an appointment and go there. While PV is NOT cancer, they will be the most likely to know how to verify this diagnosis and deal with it. With treatment, there is no reason not to have a more or less normal life with PV.

If I were you, I would call some of the major hospitals, such as Johns Hopkins, Cleveland Clinic. Carnegie mellon, and other top hospitals. Here is the one thing that you should know, the largest and the best facilities have more finances and they treat the rare cases such as yours. I would not let my child be their first case. Please dont quote me, but most of these hospitals waive their fee if you cant afford it. However, due to your sons age, he should qualify. Many have quarters (McDonald House)for parents to stay. Good luck and God Bless you.

Hi I too have it and I'm 57 years old wondering where about you live so maybe you could call like Saint Jude's they take care of children with cancer hope this gives you some help and my prayers are with you