Essential Thrombocythemia

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 

On 6/28/2007 Godspeedtoall wrote:

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 

On 8/23/2007 Terrilynn wrote:

 

On 6/28/2007 Godspeedtoall wrote:

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 

Hi Rebecca, How is your daughter doing now?. Thanks for the email response back to me. I look forward to chatting with someone that understand's  a little bit about this dx. Have you gotten anymore information. Thanks      Terri

 

Hi Terri,

My daughter Allie is doing just fine.   She still has only symptoms of her platelets being 1 million.  Her doctors are not treating her with anything.  They say that for them to put her on the medication would not be good for her because of her age she is too young.  They explained to us that the medications they use to "treat" ET are basically an oral form of chemo therapy and they choose to use them on older people and not children.  It is way to to risky for them to deliberately push her into Leukemia.  Her Hematologist/Oncologist explained that Interferon, Hydria...and the other forms of medication all transform ET into Leukemia.  Even know they do lower the platelet counts the side affects are not so kind to the body.  She has underwent other tests recently such as a platelet aggregation study and a PFA-100 (platelet function analysis) and of course she still has her cbc w/diff done every 3 months.  Talking about giving her aspirin daily for preventative measures.  Also, I have been researching a few of the health food stores in my area and I found a homeopathic remedy for lowering platelets.   I tried to find the pamphlet on it but I think I left if in my office.  I will find it and give you info on it.  Maybe you'd be interested too.  She is doing great and I have learned to accept the fact that she now has something that I will always have to keep a vigil watch over.  But that's not to say that the Lord can't work in mysterious ways.  We are believers and God has worked many medicals in our lives!  I will as always keep everyone in prayer.  Keep in touch.

Rebecca & Allie