Re: Home Sweet Home . . . At Least for Now!

[Guest guest]

..

has also been battling with neutroenia/leukopenia for the last 2 years.

He had his Bone Marrow Biopsy done a few weeks ago and while for us it came back

normal it didn't give us answers to why he's neutropenic, at least now we know!

It's frustrating when they change the " plans " isn't it???

Glad you're home, Max just had his adenoids out (he's 19months) along with

sinus surgey so I feel for you there too!!!

Sending thoughts and prayers your way!

Missy

www.caringbridge.org/boggiokids

Mom to..

10 hypogam, neutropenia, sinus etc....

Max 19 months T cell dysfunction, antibody deficiency

Mari 5 soy allergy

Fox <mfox50@...> wrote:

Well, we are home, at least for now. Thank you all for all of the prayers and

well-wishes!

appears to be over the flu, and is no longer having fevers, but his ANC

is still only 300 (worse than when he was admitted, but higher than his low of

200). I am very concerned that they have sent him home, since I was told he

would be kept until he reached 500! The doctors would not keep him any longer

without fever because he looks so well now. He will have ANC checked daily for a

while, and can return to school when he gets to 750.

Am I over-worrying about him still being so low and sent home? I feel like he's

likely to sprout another fever and we'll be right back in the hospital. With my

8 year old still going to school and my 2 year old still fighting his case of

the flu, I am really getting germophobic!

They still do not understand the cause for the super-low ANCs. They have

scheduled all three boys to come in for hematology work-up and possible bone

marrow biopsies because they suspect some other genetic blood disorder may be at

play since this has happened to our other boys as well, and they are almost

never normal with their ANCs. took 9 months to normalize the last time

we dealt with super-low counts and his normal is still low!

Assuming is OK and gets better, we have tonsil & adenoid surgery

to look forward to for ... it was supposed to be tomorrow, but the flu

got in the way so we are rescheduling!

BTW, just talked to Stef-- she's still at MGH with Sasha but hanging in there.

Sasha may be having her tonsils out Monday. , mom to 3 with CVID,

Neutropenia, Asthma

Ben (8), (6), (2), all on subQ weekly

http://www.teamhope.info/

http://foxfamilypidd.bravehost.com/

__________________________________________________________

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[Guest guest]

Hi and Missy,

can you get me up to speed on this conversation? My son is

chronically neutropenic and leukopenic, low wbc, etc. and I had

thought it was just a 'normal' part of the cvid picture. The alarm

bells have only rung when he is also anemic and low in platelets.

i'd be curious to know your experience with this. Aren't the white

cells the fighter cells and wouldn't they be low in someone with a

faulty immune system? did any of us think we would learn all these

new words when we had kids? :-) peace to all out there, Kate

mother of Ben (CVID, ALPS, autism, .........)

-

-- In , Boggio <m_boggio@...> wrote:

>

> ..

> has also been battling with neutroenia/leukopenia for the

last 2 years. He had his Bone Marrow Biopsy done a few weeks ago and

while for us it came back normal it didn't give us answers to why

he's neutropenic, at least now we know! It's frustrating when they

change the " plans " isn't it???

> Glad you're home, Max just had his adenoids out (he's 19months)

along with sinus surgey so I feel for you there too!!!

> Sending thoughts and prayers your way!

> Missy

> www.caringbridge.org/boggiokids

> Mom to..

> 10 hypogam, neutropenia, sinus etc....

> Max 19 months T cell dysfunction, antibody deficiency

> Mari 5 soy allergy

>

> Fox <mfox50@...> wrote:

>

> Well, we are home, at least for now. Thank you all for all of the

prayers and well-wishes!

>

> appears to be over the flu, and is no longer having fevers,

but his ANC is still only 300 (worse than when he was admitted, but

higher than his low of 200). I am very concerned that they have sent

him home, since I was told he would be kept until he reached 500! The

doctors would not keep him any longer without fever because he looks

so well now. He will have ANC checked daily for a while, and can

return to school when he gets to 750.

>

> Am I over-worrying about him still being so low and sent home? I

feel like he's likely to sprout another fever and we'll be right back

in the hospital. With my 8 year old still going to school and my 2

year old still fighting his case of the flu, I am really getting

germophobic!

>

> They still do not understand the cause for the super-low ANCs. They

have scheduled all three boys to come in for hematology work-up and

possible bone marrow biopsies because they suspect some other genetic

blood disorder may be at play since this has happened to our other

boys as well, and they are almost never normal with their ANCs.

took 9 months to normalize the last time we dealt with super-

low counts and his normal is still low!

>

> Assuming is OK and gets better, we have tonsil &

adenoid surgery to look forward to for ... it was supposed to

be tomorrow, but the flu got in the way so we are rescheduling!

>

> BTW, just talked to Stef-- she's still at MGH with Sasha but

hanging in there. Sasha may be having her tonsils out Monday.

, mom to 3 with CVID, Neutropenia, Asthma

> Ben (8), (6), (2), all on subQ weekly

> http://www.teamhope.info/

> http://foxfamilypidd.bravehost.com/

> __________________________________________________________

> Climb to the top of the charts! Play the word scramble challenge

with star power.

> http://club.live.com/star_shuffle.aspx?

icid=starshuffle_wlmailtextlink_jan

>

>

[Guest guest]

has your son been checked for aplastic anemia? that is

when the marrow doesnt make enough of all the cells.

if he is always low on all cell lines that needs to be

checked more thoroughly... (just my opinion).

April

--- skaia1 <katem10@...> wrote:

> Hi and Missy,

> can you get me up to speed on this conversation? My

> son is

> chronically neutropenic and leukopenic, low wbc,

> etc. and I had

> thought it was just a 'normal' part of the cvid

> picture. The alarm

> bells have only rung when he is also anemic and low

> in platelets.

> i'd be curious to know your experience with this.

> Aren't the white

> cells the fighter cells and wouldn't they be low in

> someone with a

> faulty immune system? did any of us think we would

> learn all these

> new words when we had kids? :-) peace to all out

> there, Kate

> mother of Ben (CVID, ALPS, autism, .........)

> -

>

>

>

>

> -- In , Boggio

> <m_boggio@...> wrote:

> >

> > ..

> > has also been battling with

> neutroenia/leukopenia for the

> last 2 years. He had his Bone Marrow Biopsy done a

> few weeks ago and

> while for us it came back normal it didn't give us

> answers to why

> he's neutropenic, at least now we know! It's

> frustrating when they

> change the " plans " isn't it???

> > Glad you're home, Max just had his adenoids out

> (he's 19months)

> along with sinus surgey so I feel for you there

> too!!!

> > Sending thoughts and prayers your way!

> > Missy

> > www.caringbridge.org/boggiokids

> > Mom to..

> > 10 hypogam, neutropenia, sinus etc....

> > Max 19 months T cell dysfunction, antibody

> deficiency

> > Mari 5 soy allergy

> >

> > Fox <mfox50@...> wrote:

> >

> > Well, we are home, at least for now. Thank you all

> for all of the

> prayers and well-wishes!

> >

> > appears to be over the flu, and is no

> longer having fevers,

> but his ANC is still only 300 (worse than when he

> was admitted, but

> higher than his low of 200). I am very concerned

> that they have sent

> him home, since I was told he would be kept until he

> reached 500! The

> doctors would not keep him any longer without fever

> because he looks

> so well now. He will have ANC checked daily for a

> while, and can

> return to school when he gets to 750.

> >

> > Am I over-worrying about him still being so low

> and sent home? I

> feel like he's likely to sprout another fever and

> we'll be right back

> in the hospital. With my 8 year old still going to

> school and my 2

> year old still fighting his case of the flu, I am

> really getting

> germophobic!

> >

> > They still do not understand the cause for the

> super-low ANCs. They

> have scheduled all three boys to come in for

> hematology work-up and

> possible bone marrow biopsies because they suspect

> some other genetic

> blood disorder may be at play since this has

> happened to our other

> boys as well, and they are almost never normal with

> their ANCs.

> took 9 months to normalize the last time we

> dealt with super-

> low counts and his normal is still low!

> >

> > Assuming is OK and gets better, we

> have tonsil &

> adenoid surgery to look forward to for ...

> it was supposed to

> be tomorrow, but the flu got in the way so we are

> rescheduling!

> >

> > BTW, just talked to Stef-- she's still at MGH with

> Sasha but

> hanging in there. Sasha may be having her tonsils

> out Monday.

> , mom to 3 with CVID, Neutropenia, Asthma

> > Ben (8), (6), (2), all on subQ

> weekly

> > http://www.teamhope.info/

> > http://foxfamilypidd.bravehost.com/

> >

>

__________________________________________________________

> > Climb to the top of the charts! Play the word

> scramble challenge

> with star power.

> > http://club.live.com/star_shuffle.aspx?

> icid=starshuffle_wlmailtextlink_jan

> >

> > [Non-text portions of this message have been

> removed]

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Never miss a thing. Make your homepage.

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

When everything seems to be going against you, remember the airplane takes off

against the wind, not with it.

--Henry Ford

________________________________________________________________________________\

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[Guest guest]

Hi April,

With this latest episode he was low in neutrophils (down to 200), white count

(<3000) and also platelets and hemoglobin. In general these other numbers are

usually fine. They are definitely concerned that there could be some other

genetic blood syndrome at play, so I guess we wait and see what the new tests

will show.

's latest resul for his ANC was 990 (which is much higher) so I feel

better about him being home, but I'm pushing to have it re-checked this week

before clearing him to go back to school. is feeling great, is

recovering from the flu still, and just started with fever and flu

symptoms yesterday . . . hopefully it will be easier on his body!

Thanks!!

, mom to 3 with CVID, Neutropenia, Asthma, on subQ weekly

(8), (6), and (2)http://foxfamilypidd.bravehost.com/

http://www.teamhope.info/

Re: Home Sweet Home . . . At Least for Now!

Posted by: " april rock " april_rock@... april_rock

Fri Mar 7, 2008 8:01 am (PST)

has your son been checked for aplastic anemia? that iswhen the marrow doesnt

make enough of all the cells.if he is always low on all cell lines that needs to

bechecked more thoroughly... (just my opinion).April

_________________________________________________________________

Shed those extra pounds with MSN and The Biggest Loser!

http://biggestloser.msn.com/

[Guest guest]

-I'm glad his counts are coming up and he is feeling so much

better. When Mark has an infection, particularly a severe one, his

counts plummet, esp his white count (but he does have another blood

disorder resulting in low counts anyway. It just becomes more

pronounced when he's sick). Good luck and I hope recovers

quickly.

, mom to Mark, 6, CVID

>

>

> Hi April,

>

> With this latest episode he was low in neutrophils (down to 200),

white count (<3000) and also platelets and hemoglobin. In general

these other numbers are usually fine. They are definitely concerned

that there could be some other genetic blood syndrome at play, so I

guess we wait and see what the new tests will show.

>

> 's latest resul for his ANC was 990 (which is much higher) so

I feel better about him being home, but I'm pushing to have it re-

checked this week before clearing him to go back to school. is

feeling great, is recovering from the flu still, and

just started with fever and flu symptoms yesterday . . . hopefully it

will be easier on his body!

>

> Thanks!!

>

> , mom to 3 with CVID, Neutropenia, Asthma, on subQ weekly

> (8), (6), and (2)

http://foxfamilypidd.bravehost.com/

> http://www.teamhope.info/

>

> Re: Home Sweet Home . . . At Least for Now!

> Posted by: " april rock " april_rock@... april_rock

> Fri Mar 7, 2008 8:01 am (PST)

> has your son been checked for aplastic anemia? that iswhen the

marrow doesnt make enough of all the cells.if he is always low on all

cell lines that needs to bechecked more thoroughly... (just my

opinion).April

> _________________________________________________________________

> Shed those extra pounds with MSN and The Biggest Loser!

> http://biggestloser.msn.com/

>

>