Do any parents out there have any experience with low platelet count?

[Guest guest]

Hi,

Our baby is 5 months old tomorrow and he has MDS. The reason he was diagnosed

at 2

weeks of age was because he was born with an enlarged liver and spleen, as well

as low red

cell and platelet count. Among the bloodworks done to try to figure out what

caused these

symptoms was a chromosome test. He shows no physical traits and was even

cleared by the

resident geneticist prior to the test results. Once he reached 2 months of age,

his plates and

red cells normalized and we stopped going to a hematologist every 3-4 days.

Since then,

he's been fine.

Two months ago, his platelets was slightly low, and as of today, it's below

normal. We have

to go back to the hematologist on Monday again.

Do any parents out there have experience with this? None of the doctors can

pinpoint what

is causing this. They chalk it up to MDS so I'm questioning what other MDS

patients this

happened to.

Thanks for your help!

[Guest guest]

In 2000, Christi, then 21, was diagnosed with a very low platelet count and we

were referred to an oncologist. There was even talk of a bone marrow biopsy. A

close friend who was a lab tech came to our rescue with her own evaluations. We

opted to wait and see, and everything mysteriously turned out all right.  The

details are lost in the fog of time, but if you need more info I will dig out

her records.

Judie, mom to Christi , almost 30, and others

Do any parents out there have any experience with low platelet

count?

Hi,

Our baby is 5 months old tomorrow and he has MDS. The reason he was diagnosed

at 2

weeks of age was because he was born with an enlarged liver and spleen, as well

as low red

cell and platelet count. Among the bloodworks done to try to figure out what

caused these

symptoms was a chromosome test. He shows no physical traits and was even

cleared by the

resident geneticist prior to the test results. Once he reached 2 months of age,

his plates and

red cells normalized and we stopped going to a hematologist every 3-4 days.

Since then,

he's been fine.

Two months ago, his platelets was slightly low, and as of today, it's below

normal. We have

to go back to20the hematologist on Monday again.

Do any parents out there have experience with this? None of the doctors can

pinpoint what

is causing this. They chalk it up to MDS so I'm questioning what other MDS

patients this

happened to.

Thanks for your help!

[Guest guest]

I have another question.   My son, ,  who is 2  has a low white blood

count.  Are there any others out there experiencing this problem?  His red blood

cells are ok. no neoblasts.  He was diagnosed with neutropenia.   They also

wanted to do a bone marrow biopsy but i opted not to for now.   Is this

something to worry about?

Subject: Re: Do any parents out there have any experience with low

platelet count?

To: MosaicDS

Date: Friday, December 19, 2008, 10:44 AM

In 2000, Christi, then 21, was diagnosed with a very low platelet count and we

were referred to an oncologist. There was even talk of a bone marrow biopsy. A

close friend who was a lab tech came to our rescue with her own evaluations. We

opted to wait and see, and everything mysteriously turned out all right.  The

details are lost in the fog of time, but if you need more info I will dig out

her records.

Judie, mom to Christi , almost 30, and others

Do any parents out there have any experience with low platelet

count?

Hi,

Our baby is 5 months old tomorrow and he has MDS. The reason he was diagnosed at

2

weeks of age was because he was born with an enlarged liver and spleen, as well

as low red

cell and platelet count. Among the bloodworks done to try to figure out what

caused these

symptoms was a chromosome test. He shows no physical traits and was even cleared

by the

resident geneticist prior to the test results. Once he reached 2 months of age,

his plates and

red cells normalized and we stopped going to a hematologist every 3-4 days.

Since then,

he's been fine.

Two months ago, his platelets was slightly low, and as of today, it's below

normal. We have

to go back to20the hematologist on Monday again.

Do any parents out there have experience with this? None of the doctors can

pinpoint what

is causing this. They chalk it up to MDS so I'm questioning what other MDS

patients this

happened to.

Thanks for your help!

[Guest guest]

I think I already replied once to this, but I would definitely suggest

waiting before undergoing the biopsy. Our daughter's " low platelet count " turned

out

to be idiopathic and inconsequential. (However, I am not a physician; I only

play one at home.)

Judie, mom to Christi, 30 and others

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cemailfooterNO62)

[Guest guest]

Hi - now my baby has a low white count (nuetrophils low), as well

slight anemia and still low platelet count. His poor fingers got

bruised from the needle prick to take his blood. I am starting to

consider the bone marrow aspiration and biopsy, but wonder if it's

too soon considering how it requires general anesthesia.

I don't know what to do and what the chances are that this will just

fix itself over time. The last thing I want to put him through is a

painful procedure that may either be unnecessary or inconclusive.

Thanks

>

>

> Subject: Re: Do any parents out there have any experience

with low platelet count?

> To: MosaicDS

> Date: Friday, December 19, 2008, 10:44 AM

>

>

>

>

>

>

> In 2000, Christi, then 21, was diagnosed with a very low platelet

count and we were referred to an oncologist. There was even talk of

a bone marrow biopsy. A close friend who was a lab tech came to our

rescue with her own evaluations. We opted to wait and see, and

everything mysteriously turned out all right.  The details are lost

in the fog of time, but if you need more info I will dig out her

records.

>

> Judie, mom to Christi , almost 30, and others

>

> Do any parents out there have any experience with

low platelet count?

>

> Hi,

>

> Our baby is 5 months old tomorrow and he has MDS. The reason he

was diagnosed at 2

>

> weeks of age was because he was born with an enlarged liver and

spleen, as well as low red

>

> cell and platelet count. Among the bloodworks done to try to

figure out what caused these

>

> symptoms was a chromosome test. He shows no physical traits and

was even cleared by the

>

> resident geneticist prior to the test results. Once he reached 2

months of age, his plates and

>

> red cells normalized and we stopped going to a hematologist every

3-4 days. Since then,

>

> he's been fine.

>

> Two months ago, his platelets was slightly low, and as of today,

it's below normal. We have

>

> to go back to20the hematologist on Monday again.

>

> Do any parents out there have experience with this? None of the

doctors can pinpoint what

>

> is causing this. They chalk it up to MDS so I'm questioning what

other MDS patients this

>

> happened to.

>

> Thanks for your help!

>

>

[Guest guest]

What does your doctor say about the low count?

Kristy

Subject: Re: Do any parents out there have any experience with low

platelet count?

To: MosaicDS

Date: Tuesday, January 20, 2009, 9:35 PM

Hi - now my baby has a low white count (nuetrophils low), as well

slight anemia and still low platelet count. His poor fingers got

bruised from the needle prick to take his blood. I am starting to

consider the bone marrow aspiration and biopsy, but wonder if it's

too soon considering how it requires general anesthesia.

I don't know what to do and what the chances are that this will just

fix itself over time. The last thing I want to put him through is a

painful procedure that may either be unnecessary or inconclusive.

Thanks

>

> From: jhockel@... <jhockel@... >

> Subject: Re: Do any parents out there have any experience

with low platelet count?

> To: MosaicDS@yahoogroup s.com

> Date: Friday, December 19, 2008, 10:44 AM

>

>

>

>

>

>

> In 2000, Christi, then 21, was diagnosed with a very low platelet

count and we were referred to an oncologist. There was even talk of

a bone marrow biopsy. A close friend who was a lab tech came to our

rescue with her own evaluations. We opted to wait and see, and

everything mysteriously turned out all right.  The details are lost

in the fog of time, but if you need more info I will dig out her

records.

>

> Judie, mom to Christi , almost 30, and others

>

> Do any parents out there have any experience with

low platelet count?

>

> Hi,

>

> Our baby is 5 months old tomorrow and he has MDS. The reason he

was diagnosed at 2

>

> weeks of age was because he was born with an enlarged liver and

spleen, as well as low red

>

> cell and platelet count. Among the bloodworks done to try to

figure out what caused these

>

> symptoms was a chromosome test. He shows no physical traits and

was even cleared by the

>

> resident geneticist prior to the test results. Once he reached 2

months of age, his plates and

>

> red cells normalized and we stopped going to a hematologist every

3-4 days. Since then,

>

> he's been fine.

>

> Two months ago, his platelets was slightly low, and as of today,

it's below normal. We have

>

> to go back to20the hematologist on Monday again.

>

> Do any parents out there have experience with this? None of the

doctors can pinpoint what

>

> is causing this. They chalk it up to MDS so I'm questioning what

other MDS patients this

>

> happened to.

>

> Thanks for your help!

>

>

[Guest guest]

His hematologist is just monitoring it right now, although he says

that given the MDS diagnosis, he's more sensitive to abnormal

bloodworks. If this were another child, he wouldn't be as

concerned. Of course, it's a bit frustrating for me because the

doctors always speak of DS, and not MDS, and doesn't seem like they

make a differentiation between the two.

Since he's my first baby, i really don't know what's alarming or

what's the standard problems a regular baby can have. For example,

he has become the FUSSIEST eater. It's a fight to get milk down

him. But i make it my JOB to feed him and I keep him at the 75th

percentile for weight. I don't know if he's fussy because i'm

overfeeding him, and I'm scared to take a chance and just feed him

on demand - for fear that he won't get enough nutrients to develop

blood cells.

> >

> > From: jhockel@ <jhockel@>

> > Subject: Re: Do any parents out there have any experience

> with low platelet count?

> > To: MosaicDS

> > Date: Friday, December 19, 2008, 10:44 AM

> >

> >

> >

> >

> >

> >

> > In 2000, Christi, then 21, was diagnosed with a very low

platelet

> count and we were referred to an oncologist. There was even talk

of

> a bone marrow biopsy. A close friend who was a lab tech came to

our

> rescue with her own evaluations. We opted to wait and see, and

> everything mysteriously turned out all right.  The details are

lost

> in the fog of time, but if you need more info I will dig out her

> records.

> >

> > Judie, mom to Christi , almost 30, and others

> >

> > Do any parents out there have any experience with

> low platelet count?

> >

> > Hi,

> >

> > Our baby is 5 months old tomorrow and he has MDS. The reason he

> was diagnosed at 2

> >

> > weeks of age was because he was born with an enlarged liver and

> spleen, as well as low red

> >

> > cell and platelet count. Among the bloodworks done to try to

> figure out what caused these

> >

> > symptoms was a chromosome test. He shows no physical traits and

> was even cleared by the

> >

> > resident geneticist prior to the test results. Once he reached 2

> months of age, his plates and

> >

> > red cells normalized and we stopped going to a hematologist

every

> 3-4 days. Since then,

> >

> > he's been fine.

> >

> > Two months ago, his platelets was slightly low, and as of today,

> it's below normal. We have

> >

> > to go back to20the hematologist on Monday again.

> >

> > Do any parents out there have experience with this? None of the

> doctors can pinpoint what

> >

> > is causing this. They chalk it up to MDS so I'm questioning what

> other MDS patients this

> >

> > happened to.

> >

> > Thanks for your help!

> >

> >