elevated platelet counts

[Guest guest]

Hello

Elevated platelet count is seen often in children with various forms

of Periodic Fever Syndtromes. They are unsure why at this point

however it is definitely commonly seen in this group of children. My

son ph always had significantly elevated platelet counts even more

so elevated during his fever events.

He has had multiple spinal taps. In our case the spinal taps were the

reason why he was further tested and had the test done at a later date

for CIAS1 mutation. For children or adults with NOMID especially it is

common to have " chronic meningitis " ... THIS IS SPECIFIC for this

disorder ONLY, so please do not panic. The disease is MUCH more rare

than any of the other Periodic Fever Disorders. We are also blessed

that he does NOT have some of the more severe symptoms. His fevers

were more severe than most children here at the site however not close

to the children at the NOMID site.

So, elevated platelets are seen in all of the PFSs...

As a baby ph was diagnosed with " aseptic meningitis " on at least 3

occasions. This means he had NO Viral loads NOR did he have bacterial

loads. He simply had White blood cells in abundance found in his

cerebro-spinal fluid. This is NOT common in any other PFS than NOMID.

If your little one has a viral load which is the most common form of

meningitis the prognosis is excellent.

God Bless

Fran

Fran A Bulone

Mom to ph 6 yrs old NOMID

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Hello, My name is Mackenzie and my Grandmother has had CML for fifteen plus

years. She started with enterferon, then gleevec, and now sprycel. They told

us that she would last 6mths and she has fought this long..so in my opinion she

has done well. We are experiencing elevated platelet counts now, and they are

telling us that she needs to increase the sprycel because it is a sign of

acceration in the CML. They have elevated and returned back to normal

previously without medication adjustment..so we just don't know what to think.

Does anyone have any thoughts, advice, personal experience with this? We would

love any input that you could give us. Hope you all have a Merry

Christmas...Mackenzie

[Guest guest]

>

> Hello, My name is Mackenzie and my Grandmother has had CML for fifteen plus

years. She started with enterferon, then gleevec, and now sprycel. They told

us that she would last 6mths and she has fought this long..so in my opinion she

has done well. We are experiencing elevated platelet counts now, and they are

telling us that she needs to increase the sprycel because it is a sign of

acceration in the CML. They have elevated and returned back to normal

previously without medication adjustment..so we just don't know what to think.

Does anyone have any thoughts, advice, personal experience with this? We would

love any input that you could give us. Hope you all have a Merry

Christmas...Mackenzie

_________________________

Hi Mackenzie,

First, I would put that question to a cml specialist, like Dr. Druker, who will

answer a question from you and give his opinion. E-mail him at drukerb@...

I see him and know that he is on vacation until the first of the year, but he

will answer you. Just give him enough specific information.

Also, there is an older woman (Jeannie ?) who posts on Jerrys website,

www.newcmldrug.com....click on Sprycel Talk. She was dealing with high platelets

on Gleevec and has gone onto Sprycel and she is doing fine now....maybe she can

share some information with you.

What is your Grandmother's dose on Sprycel? is she having problems with that

dose, or could it be increased?

Best wishes to you both,

C.