Re: lymphocytopenia and PID

[Guest guest]

My boys have low lymphocytes, but it is because they have Shwachman-Diamond

Syndrome. If you go to www.shwachmandiamondamerica.org

<http://www.shwachmandiamondamerica.org/> and click on " community " and then

on the blood forum, there are quite a few links to information on blood

counts, etc that may be of interest to you.

Peace Be With You,

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

[Guest guest]

Good Morning ,

Both of my daughters as well as myself have CVID....pretty

uncomplicated CVID as far as complications go...meaning their

disorder is limited to CVID....All three of us have consistantly low

lymphocyte levels....they have never been in the normal range. We

also all have below normal white cell counts unless we have an

infection. We have always been told that it is just pretty much run

of the mill for CVID and nothing to worry about. That doesn't mean

that you shold just accept it. Ask questions....but in our case, it

is nothing to worry about.

Terri

>

> Hi all. I have not posted in a while. To update, my son

has

> an antibody deficiency, osteogenesis imperfecta(brittle bone

> disease), severe asthma, and autism. For the past couple of years

he

> has always shown low lymphocytes on CBC. A month ago with an

Aredia

> infusion (for bone density) he began running 103-104 the next day.

> His temp stayed that high for 5 days. Then stayed between 99.5-101

> for another 5 days. He had no other symptoms, but a terrible

> headache. The dr said it was not the drug. His labs at that time

> were normal wbc, very high neutrophils 92%, and very low

lymphocytes

> 4%, high CRP 35. He had to do 2 days of IV fluids during this time

> he got so dehydrated. No source of infection was found. He began

> doing better a couple of weeks ago and is acting normal now. We

saw

> the immuno last week and he checked his counts to make sure they

> recovered, and while not as bad they are still out of whack. His

> neutrophils high 76%, lymphs low 13%, and CRP still high 6.5. ANy

> ideas? Is it likely a virus with no real symptoms but high fever

and

> headache still cause lab changes a month later? I am concerned

about

> the persistant low lymphocytes he always has. I asked the immuno

> about it, and told him I had read several reports of

lymphocytopenia

> in immune deficiency wondering if he has more than just no

response

> to pnemo titers going on. He says he is not aware of such

problems.

> I don't know if he is putting me off, because he is not stupid, he

> is the best immuno in Dallas, highly rated. He treats my daughter

> for a very rare disease, and I know he is constantly researching,

> he has to know there is a link. He is starting on daily

> Bactrim for preventative, but I had wondered if he needed IVIG.

> RIght now the immuno says no.

>

> Do any of your kids have low lymphocytes? Is it important? I had

> thought he had B and T cell tests, but in looking through things I

> don't think he has. WOuld it be common knowledge to a bright

immuno

> of low lymphocytes in PID, or is this more hematology? Thanks.

> '

>

>

[Guest guest]

We have an unnamed immune disorder in (4 1/2) as of yet and we have

low lymphocytes and chronic Neutropenia as well

L

Re: lymphocytopenia and PID

Good Morning ,

Both of my daughters as well as myself have CVID....pretty

uncomplicated CVID as far as complications go...meaning their

disorder is limited to CVID....All three of us have consistantly low

lymphocyte levels....they have never been in the normal range. We

also all have below normal white cell counts unless we have an

infection. We have always been told that it is just pretty much run

of the mill for CVID and nothing to worry about. That doesn't mean

that you shold just accept it. Ask questions....but in our case, it

is nothing to worry about.

Terri

>

> Hi all. I have not posted in a while. To update, my son

has

> an antibody deficiency, osteogenesis imperfecta(brittle bone

> disease), severe asthma, and autism. For the past couple of years

he

> has always shown low lymphocytes on CBC. A month ago with an

Aredia

> infusion (for bone density) he began running 103-104 the next day.

> His temp stayed that high for 5 days. Then stayed between 99.5-101

> for another 5 days. He had no other symptoms, but a terrible

> headache. The dr said it was not the drug. His labs at that time

> were normal wbc, very high neutrophils 92%, and very low

lymphocytes

> 4%, high CRP 35. He had to do 2 days of IV fluids during this time

> he got so dehydrated. No source of infection was found. He began

> doing better a couple of weeks ago and is acting normal now. We

saw

> the immuno last week and he checked his counts to make sure they

> recovered, and while not as bad they are still out of whack. His

> neutrophils high 76%, lymphs low 13%, and CRP still high 6.5. ANy

> ideas? Is it likely a virus with no real symptoms but high fever

and

> headache still cause lab changes a month later? I am concerned

about

> the persistant low lymphocytes he always has. I asked the immuno

> about it, and told him I had read several reports of

lymphocytopenia

> in immune deficiency wondering if he has more than just no

response

> to pnemo titers going on. He says he is not aware of such

problems.

> I don't know if he is putting me off, because he is not stupid, he

> is the best immuno in Dallas, highly rated. He treats my daughter

> for a very rare disease, and I know he is constantly researching,

> he has to know there is a link. He is starting on daily

> Bactrim for preventative, but I had wondered if he needed IVIG.

> RIght now the immuno says no.

>

> Do any of your kids have low lymphocytes? Is it important? I had

> thought he had B and T cell tests, but in looking through things I

> don't think he has. WOuld it be common knowledge to a bright

immuno

> of low lymphocytes in PID, or is this more hematology? Thanks.

> '

>

>

[Guest guest]

We have an unnamed immune disorder in (4 1/2) as of yet and we have

low lymphocytes and chronic Neutropenia as well

L

Re: lymphocytopenia and PID

Good Morning ,

Both of my daughters as well as myself have CVID....pretty

uncomplicated CVID as far as complications go...meaning their

disorder is limited to CVID....All three of us have consistantly low

lymphocyte levels....they have never been in the normal range. We

also all have below normal white cell counts unless we have an

infection. We have always been told that it is just pretty much run

of the mill for CVID and nothing to worry about. That doesn't mean

that you shold just accept it. Ask questions....but in our case, it

is nothing to worry about.

Terri

>

> Hi all. I have not posted in a while. To update, my son

has

> an antibody deficiency, osteogenesis imperfecta(brittle bone

> disease), severe asthma, and autism. For the past couple of years

he

> has always shown low lymphocytes on CBC. A month ago with an

Aredia

> infusion (for bone density) he began running 103-104 the next day.

> His temp stayed that high for 5 days. Then stayed between 99.5-101

> for another 5 days. He had no other symptoms, but a terrible

> headache. The dr said it was not the drug. His labs at that time

> were normal wbc, very high neutrophils 92%, and very low

lymphocytes

> 4%, high CRP 35. He had to do 2 days of IV fluids during this time

> he got so dehydrated. No source of infection was found. He began

> doing better a couple of weeks ago and is acting normal now. We

saw

> the immuno last week and he checked his counts to make sure they

> recovered, and while not as bad they are still out of whack. His

> neutrophils high 76%, lymphs low 13%, and CRP still high 6.5. ANy

> ideas? Is it likely a virus with no real symptoms but high fever

and

> headache still cause lab changes a month later? I am concerned

about

> the persistant low lymphocytes he always has. I asked the immuno

> about it, and told him I had read several reports of

lymphocytopenia

> in immune deficiency wondering if he has more than just no

response

> to pnemo titers going on. He says he is not aware of such

problems.

> I don't know if he is putting me off, because he is not stupid, he

> is the best immuno in Dallas, highly rated. He treats my daughter

> for a very rare disease, and I know he is constantly researching,

> he has to know there is a link. He is starting on daily

> Bactrim for preventative, but I had wondered if he needed IVIG.

> RIght now the immuno says no.

>

> Do any of your kids have low lymphocytes? Is it important? I had

> thought he had B and T cell tests, but in looking through things I

> don't think he has. WOuld it be common knowledge to a bright

immuno

> of low lymphocytes in PID, or is this more hematology? Thanks.

> '

>

>

[Guest guest]

Patti,

Thanks for the info on this disease. I am going to read up on it.

Last year a dr suggested to me could have this, mainly

because he had such bad osteoporosis and GI problems. None of the

other drs thought much if it. I read a little about it, but I need

to go back and look into it more. Thanks.

>

> My boys have low lymphocytes, but it is because they have

Shwachman-Diamond

> Syndrome. If you go to www.shwachmandiamondamerica.org

> <http://www.shwachmandiamondamerica.org/> and click

on " community " and then

> on the blood forum, there are quite a few links to information on

blood

> counts, etc that may be of interest to you.

>

>

>

> Peace Be With You,

>

> ~Pattie~

>

> " What matters is not great deeds, but great love. " ~ St. Therese

of Lisieux

>

>

>

>

> Family website: www.shwachman.50megs.com

>

>

>

>

>

>

>

>

[Guest guest]

,

I have been reading all of your posts. My first question is who are

you going to here in Dallas? If it is as you say an the " best " you

must be with Wasserman or Rembecki. If you are not you have been

misinformed about their stature. I am here for you and in your area.

I would love to talk to you more and see what I can do to help. We

are actually in the process of creating a physical support group in

the area. My time is very limited, but I will do my best to get back

to you ASAP!

You can email be back directly at projectparker@...

Tiff

s Proud Mommy