Re: age of PID diagnosis

[Guest guest]

Macey was symptomatic at 6 weeks. On IV meds at 18 months and diagnosed at 2

years.

Ursula - mom to (16) and Macey (13,CVID)

http://www.caringbridge.org/visit/maceyholleman

@...: julieg52@...: Fri, 5 Dec 2008 19:45:37

-0800Subject: age of PID diagnosis

Hi everyone. We have one child diagnosed with CVID at 19 months after

severe infection( he's now 3 1/2). We have just had another baby (2 wks old)

and were wondering at what ages others have gotten their PID diagnosis. How old

was your child when he/she was diagnosed with a PID? I know many go for years

and into adulthood before diagnosis, just wondered about those who had an early

diagnosis. Our doctors are following our new baby closely (our other child does

not have PID, he's 2 and healthy), but say they won't have a good picture until

6months and a better picture at 1 year. Thanks!mom to:Kali - 8Jack - 3 1/2

CVIDGabe - 2Casey- 2 weeksFrom: Ursula Holleman <uahollem@...>Subject: RE:

Question about MMR titers@...: Friday,

December 5, 2008, 1:12 PMyes. what was her level? Was it only the Measles part

of the test she was low on?Ursula - mom to (16) and Macey (13,CVID)

http://www.caringbr idge.org/ visit/maceyholle mangroups (DOT)

comFrom: bluetaelonatt (DOT) netDate: Fri, 5 Dec 2008 10:09:53 -0800Subject:

Question about MMR titersA post just reminded me of something, I picked

up 's last labs at the hospital and she's been on Ig for 2 years now but

she failed the antibody tests for measles. Shouldn't she be getting protection

from measles from the Ig? 8 CVID [Non-text portions of this message

have been removed]

[Guest guest]

Congrats on the new baby. was 10 when he was diagnosed.

@...: julieg52@...: Fri, 5 Dec 2008 19:45:37

-0800Subject: age of PID diagnosis

Hi everyone. We have one child diagnosed with CVID at 19 months after

severe infection( he's now 3 1/2). We have just had another baby (2 wks old)

and were wondering at what ages others have gotten their PID diagnosis. How old

was your child when he/she was diagnosed with a PID? I know many go for years

and into adulthood before diagnosis, just wondered about those who had an early

diagnosis. Our doctors are following our new baby closely (our other child does

not have PID, he's 2 and healthy), but say they won't have a good picture until

6months and a better picture at 1 year. Thanks!mom to:Kali - 8Jack - 3 1/2

CVIDGabe - 2Casey- 2 weeksFrom: Ursula Holleman <uahollem@...>Subject: RE:

Question about MMR titers@...: Friday,

December 5, 2008, 1:12 PMyes. what was her level? Was it only the Measles part

of the test she was low on?Ursula - mom to (16) and Macey (13,CVID)

http://www.caringbr idge.org/ visit/maceyholle mangroups (DOT)

comFrom: bluetaelonatt (DOT) netDate: Fri, 5 Dec 2008 10:09:53 -0800Subject:

Question about MMR titersA post just reminded me of something, I picked

up 's last labs at the hospital and she's been on Ig for 2 years now but

she failed the antibody tests for measles. Shouldn't she be getting protection

from measles from the Ig? 8 CVID [Non-text portions of this message

have been removed]

[Guest guest]

What kind of symptoms did she have at 6 weeks?  Our first child only presented

with recurrent ear infections so it was hard to pick up early.

 

Thanks!

From: Ursula Holleman <uahollemmsn (DOT) com>Subject: RE:

Question about MMR titersgroups (DOT) comDate: Friday, December 5,

2008, 1:12 PMyes. what was her level? Was it only the Measles part of the test

she was low on?Ursula - mom to

(16) and Macey (13,CVID) http://www.caringbr idge.org/ visit/maceyholle

mangroups (DOT) comFrom: bluetaelonatt (DOT) netDate: Fri, 5 Dec 2008

10:09:53 -0800Subject: Question about MMR titersA post just reminded me

of something, I picked up 's last labs at the hospital and she's been on Ig

for 2 years now but she failed the antibody tests for measles. Shouldn't she be

getting protection from measles from the Ig? 8 CVID [Non-text

portions of this message have been removed][Non- text portions of this message

have been removed]

[Guest guest]

had her first pneumonia by 3 months but she wasn't given formal dx

until she was 6. If she had been formula fed and vaccinated she could have

been dx'd at a year when we first saw the immunologist.

8 CVID

Question about MMR titers

A post just reminded me of something, I picked up 's last labs at the

hospital and she's been on Ig for 2 years now but she failed the antibody

tests for measles. Shouldn't she be getting protection from measles from the

Ig? 8 CVID

[Guest guest]

" at what ages others have gotten their PID

diagnosis. How old was your child when he/she was diagnosed with a

PID? "

Our daughter started with GI symptoms at 6 months, recurrent infections at 11

mos, blood infection/probable sepsis at 22 mos, and working diagnosis of hypogam

at 2 years.

A genetics doc just pointed us to this:

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene & part=cvid

It's one of the better reviews I've seen of CVID.

Here is one excerpt:

" Disease characteristics. Common variable immune deficiency

(CVID) is characterized by humoral immune deficiency with onset after

24 months of age and usually in young adulthood, resulting in increased

susceptibility to infections and diminished responses to protein and

polysaccharide vaccines. The most common infections are sinopulmonary

and include Streptococcus pneumonia, Hemophilis influenza, Klebsiella pneumonia,

and sometimes mycoplasma infections. Individuals may

experience meningitis or other systemic bacterial infections, recurrent

eye or skin infections, or gastrointestinal symptoms related to

compromised immune/gut homeostasis, including chronic diarrhea,

malabsorption, or bloating. They may also have abnormal T-cell function

and immune dysregulation, including lymphoid hyperplasia,

gastrointestinal inflammation, autoimmune phenomena, and susceptibility

to malignancy, especially lymphomas. "

mom to CVIDer, 7

[Guest guest]

, Mark was a little different because he was diagnosed at 3

months, when they were doing a work up to diagnose another problem.

He had no signs of PID at that time, no infections, but was started

on IVIG right away.

We were obviously very concerned with our next two babies. When they

were born, they drew igg levels from the cord blood. From there,

they drew igg levels every few months to see what the levels were and

if they were increasing. At a year, we started doing titer testing.

Both my two younger sons had low igg levels that first year, but by

the time they were around 18 months, it had gone up. Once the igg

levels came up to normal and the titers were all good, they stopped

checking and said it was " transient " hypogam. Sometimes it just

takes babies a longer time to get the igg levels they need, they

think it's a lot more common than studies prove, since how many

babies are tested for it? Anyway, don't panic if the baby's levels

are a little low at first. My two younger boys are fine, it just

took them a little longer. I was really careful with them for that

first year and a half, though, as far as exposure just to be safe.

Best wishes,

mom to Mark 7 CVID

>

> From: Ursula Holleman <uahollem@...>

> Subject: RE: Question about MMR titers

>

> Date: Friday, December 5, 2008, 1:12 PM

>

>

>

>

>

>

>

> yes. what was her level? Was it only the Measles part of the test

she was low on?

> Ursula - mom to (16) and Macey (13,CVID) http://www.caringbr

idge.org/ visit/maceyholle man

>

> groups (DOT) comFrom: bluetaelonatt (DOT) netDate: Fri, 5

Dec 2008 10:09:53 -0800Subject: Question about MMR titers

>

> A post just reminded me of something, I picked up 's last labs

at the hospital and she's been on Ig for 2 years now but she failed

the antibody tests for measles. Shouldn't she be getting protection

from measles from the Ig? 8 CVID

>

>

[Guest guest]

Nick was dx at 18 months, he started with GI symptoms at birth and just went

from there.. ear infections, mastoiditis, was septic once, RSV, brocholitis,

pnuemonias. First set of ear tubes at 6 months and second set at 18 months.

Amy, mom to Nick (will be 6 in 2 weeks) CVID, Noah 9 (healthy) and Kayla 12

(healthy)

Question about MMR titers

A post just reminded me of something, I picked up 's last labs at the

hospital and she's been on Ig for 2 years now but she failed the antibody tests

for measles. Shouldn't she be getting protection from measles from the

Ig? 8 CVID

[Guest guest]

HI I think it depends on the family and on the doctors.

But if you are nursing which I would STRONGLY recommend for at least a year and

to part time into the second year then it may help your baby from getting as

sick as soon as a baby that is formula fed. You provide antibodies to the baby

from everything you touch throughout the period of time that you nurse.

Otherwise. We had a clear picture by 6 months that my son had an immune

disorder. He was adopted so I only had a couple of oz of milk per day . He had

his first ear infection at a week old and was NEVER well after that, he also had

numerous Upper Respiratory Infections as well as gut problems and numerous

allergies to foods and vaccines. I would go VERY slow with vaccines due to

having one child with a PID.

BARBIE

________________________________

From: gillespie <julieg52@...>

Sent: Friday, December 5, 2008 9:45:37 PM

Subject: age of PID diagnosis

Hi everyone.

We have one child diagnosed with CVID at 19 months after severe

infection( he's now 3 1/2). We have just had another baby (2 wks old) and were

wondering at what ages others have gotten their PID diagnosis. How old was your

child when he/she was diagnosed with a PID? I know many go for years and into

adulthood before diagnosis, just wondered about those who had an early

diagnosis. Our doctors are following our new baby closely (our other child does

not have PID, he's 2 and healthy), but say they won't have a good picture until

6months and a better picture at 1 year.

Thanks!

mom to:

Kali - 8

Jack - 3 1/2 CVID

Gabe - 2

Casey- 2 weeks

From: Ursula Holleman <uahollemmsn (DOT) com>

Subject: RE: Question about MMR titers

groups (DOT) com

Date: Friday, December 5, 2008, 1:12 PM

yes. what was her level? Was it only the Measles part of the test she was low

on?

Ursula - mom to (16) and Macey (13,CVID) http://www.caringbr idge.org/

visit/maceyholle man

groups (DOT) comFrom: bluetaelonatt (DOT) netDate: Fri, 5 Dec 2008

10:09:53 -0800Subject: Question about MMR titers

A post just reminded me of something, I picked up 's last labs at the

hospital and she's been on Ig for 2 years now but she failed the antibody tests

for measles. Shouldn't she be getting protection from measles from the

Ig? 8 CVID

[Guest guest]

I agree, breastmilk does wonders with PID kids, dd was sick a lot but it

would have been far worse if she wasn't nursing. Every time I would try

weaning her her lab numbers would crash immediately. I finally said enough

was enough and weaned her on her 5th birthday and she crashed just like we

expected but we got a clear dx pretty fast. The amount of immunogloblin she

was getting from me was effecting her test results and once she no longer

got it from me it was clear she needed IVIG. Were now running into the same

problem with my 2 yr old but the benefits of nursing far outweigh the risks

of weaning (she has other health issues where nursing is keeping her from

needing a g-tube)

Question about MMR titers

>

> A post just reminded me of something, I picked up 's last labs at the

> hospital and she's been on Ig for 2 years now but she failed the antibody

> tests for measles. Shouldn't she be getting protection from measles from

> the Ig? 8 CVID

>

>

[Guest guest]

HURRAY for your COMMITMENT !!! She is much better off from your giving

her the support that she got. The international average for breastfeeding is 4.5

years so you were not far off. I am now living in a state where breastfeeding

means 3 months. ( I previously lived in WA state where the Drs were mostly

committed to 2 years of nursing in our community. It is such a drastic change to

see people being told to stop for the craziest of reasons and I am amazed at the

number of people that do not have support to make it work and then think they

have a family or medical problem that prevents them from nursing. Your immune

system protected her for all of the those years. I have known a few moms that

pumped and gave kids milk in a cup for years and even froze some for when they

were sick. It is an amazing .live substance that our culture does not fully

value. I think we would have far less illness as aging adults if we had a

society of breastfed people. (

Actually many studies actually show this to be the case) I wonder what it would

take for all of us to realize this and begin to do what it takes. I really

regret that I did not find someone to donate breastmilk for my kids. I nursed

but only had a very small suppy after months of pumping my adopted kids but it

was not OK to get breast milk 13 and 18 years ago. My son really suffered

without it. I think we need to begin looking at it as a public health issue

rather than just a personal choice. I know what I am saying is controversial but

I have some very strong feeling about it. We are feeding formula that was as I

was raising my kids full of coconut milk and saturated and hydrogenated oils and

soy is now being shown to cause problems with hormones in female kids due to the

phyto estrogens in it. My daughter did have early puberty ( age 6) and she was

on soy formula. I do not have the answers but I do know that we as a society do

need to begin looking

at things since our future as a nation depends on it. We are bankrupting our

futures through runaway health care costs and a great deal of it is in my

opininon preventable. I know I am not perfect but having sick kids sure has

helped me take another look at what I am doing. I guess you were not asking for

a book but I just have so much feeling around this both professionally as well

as personally. ( I am an RN and International Board Certified Lactation

Consultant IBCLC) So many times it is looked at as a fringe area of personal

choice and that we should just let people do what they want ( I personally

compare the issue of breastfeeding with smoking and obesity) And yes I am

diabetic and 20lbs overweight so do not have much to talk about yet)

BARBIE

________________________________

From: <bluetaelon@...>

Sent: Tuesday, December 9, 2008 2:09:03 AM

Subject: Re: age of PID diagnosis

I agree, breastmilk does wonders with PID kids, dd was sick a lot but it

would have been far worse if she wasn't nursing. Every time I would try

weaning her her lab numbers would crash immediately. I finally said enough

was enough and weaned her on her 5th birthday and she crashed just like we

expected but we got a clear dx pretty fast. The amount of immunogloblin she

was getting from me was effecting her test results and once she no longer

got it from me it was clear she needed IVIG. Were now running into the same

problem with my 2 yr old but the benefits of nursing far outweigh the risks

of weaning (she has other health issues where nursing is keeping her from

needing a g-tube)

Question about MMR titers

>

> A post just reminded me of something, I picked up 's last labs at the

> hospital and she's been on Ig for 2 years now but she failed the antibody

> tests for measles. Shouldn't she be getting protection from measles from

> the Ig? 8 CVID

>

>

[Guest guest]

Hi Barbara,

           when you say go very slow with vaccines, what is your thought?  We

have been debating how to do them and when, would love to hear any ideas anyone

has.  We know he will not recieve live vaccines for at least 1-2 years if tests

come back " normal " , but what is a reasonable dosing schedule for the others and

when?  We would like to do them one at a time although it will put us making

many trips to the doctor's office, we don't care, but are not sure at what age

we would like to do them.  Thoughts or opinions are appreciated. 

 

 

 Kali- 8 healthy

Jack- 3 CVID with severe viral spinal fluid infection that is not curable

Gabe- 2 healthy

Casey- 2 weeks , testing awaits

From: Ursula Holleman <uahollemmsn (DOT) com>

Subject: RE: Question about MMR titers

groups (DOT) com

Date: Friday, December 5, 2008, 1:12 PM

yes. what was her level? Was it only the Measles part of the test she was low

on?

Ursula - mom to (16) and Macey (13,CVID) http://www.caringbr idge.org/

visit/maceyholle man

groups (DOT) comFrom: bluetaelonatt (DOT) netDate: Fri, 5 Dec 2008

10:09:53 -0800Subject: Question about MMR titers

A post just reminded me of something, I picked up 's last labs at the

hospital and she's been on Ig for 2 years now but she failed the antibody tests

for measles. Shouldn't she be getting protection from measles from the

Ig? 8 CVID

[Guest guest]

I had two kids that had trouble with their vaccines. I gave just DT at 4 mo and

then waited a month in between the rest. I gave my daughter the DTP but she got

very sick so I chose not to give it to my son until we went to the immunologist

at Childrens Hospital in Seattle when he was 2 they gave it along with the DtAP

and Polio. He ended up with a temp of 105 and we were back at the ER the next

day. He was as sick as I had ever seen him. My kids are adopted and are not

biologically related so I do not know why they had such a tough time. My son has

the PID. I did not give him any live vaccines. So no MMR for either of them. It

is such a tough decision to make. I am going through this again now since my

grandson is 3 mo old. I am a pediatric nurse so since I have seen kids with the

diseases it makes it harder. Whooping Cough is Nasty . The ones that seem to

cause the problems are the Pertussis, MMR and I would be wary of Chickenpox only

because it is

live. My son has not had any other vaccines except the flu and 3 pnuemo

vaccines since then because he is on Gamma globulin and supposedly gets immunity

from it. I just sent a link to the group from University of WA regarding CVID

the most common immune deficiency. Your son is very young and really it is not

surprising that he has not been diagnosed. But from what you have said so far in

our posts it seems that there are more tests to be run to determine whether he

has a PID. I was very fortuanate that I had a good Immunologist to work with and

he diagnosed him at 20mo. In looking back I still did not have a plan that was

implemented until he was 4 and had a great deal more illness to scar his lungs

and sinuses. If I had it to do again I would have pushed harder to get him on

Gamma globulin. The information for diagnosis is out there and in many cases is

being ignored to wait and make sure rather than to over diagnose. Especially

since it is so

expensive to give gamma globulin and the current issues around insurance. Your

son has more testing to be done and some of it is not accurate until atleast 2

so I would be out there looking for a second opinion. I saw my job as to protect

my sons organs for the long haul. I know you just want him to get well, I can

empathize. But you also want an accurate diagnosis so that you can not give him

a blood product that has its own risks if it is not necessary. I do not think

that vaccines are really your issue right now. It is getting another opinion

from a major medical center or Childrens Hospital with a Pediatric Immunologist.

You might be able to get some referances from IDF or others that live in your

state. I know this is really a hard time watching your little guy so sick but

if you do not advocate for him then there is NO ONE else to do so. BARBIE Lucas

13, CVID, Bipolar on sub Q gamma globulin

BARBIE

________________________________

From: gillespie <julieg52@...>

Sent: Tuesday, December 9, 2008 6:00:18 PM

Subject: Re: age of PID diagnosis

Hi Barbara,

when you say go very slow with vaccines, what is your thought? We

have been debating how to do them and when, would love to hear any ideas anyone

has. We know he will not recieve live vaccines for at least 1-2 years if tests

come back " normal " , but what is a reasonable dosing schedule for the others and

when? We would like to do them one at a time although it will put us making

many trips to the doctor's office, we don't care, but are not sure at what age

we would like to do them. Thoughts or opinions are appreciated.

Kali- 8 healthy

Jack- 3 CVID with severe viral spinal fluid infection that is not curable

Gabe- 2 healthy

Casey- 2 weeks , testing awaits

From: Ursula Holleman <uahollemmsn (DOT) com>

Subject: RE: Question about MMR titers

groups (DOT) com

Date: Friday, December 5, 2008, 1:12 PM

yes. what was her level? Was it only the Measles part of the test she was low

on?

Ursula - mom to (16) and Macey (13,CVID) http://www.caringbr idge.org/

visit/maceyholle man

groups (DOT) comFrom: bluetaelonatt (DOT) netDate: Fri, 5 Dec 2008

10:09:53 -0800Subject: Question about MMR titers

A post just reminded me of something, I picked up 's last labs at the

hospital and she's been on Ig for 2 years now but she failed the antibody tests

for measles. Shouldn't she be getting protection from measles from the

Ig? 8 CVID

[Guest guest]

Hi Barbara,

           I appreciated your insight into vaccines.  I wanted to clear up some

information that I think has gotten confused between postings.  We have one son

with a PID and terminal infection, he has been diagnosed since he was 18 months

and is now 3.  We have been to three different immunologists for him and he is

currently recieving treatment through Duke University.  The vaccine information

I was seeking was for our newborn son.  We will not know, like you said, for

some time if his immune system is functioning normally, so we are wanting to be

extra cautious with vaccines until we get a clearer picture and know that he

doesn't have CVID also.  They have already told us no live vaccines and that we

can put in place an alternative vaccine schedule for him, I just wasn't sure

which ones and how far to seperate the timing of them.  Your opinion on that was

very helpful !  Just wanted to let you know that the vaccine question

was not for our sick son, but rather our healthy(so far) one. 

 

Thanks!

 

From: Ursula Holleman <uahollemmsn (DOT) com>

Subject: RE: Question about MMR titers

groups (DOT) com

Date: Friday, December 5, 2008, 1:12 PM

yes. what was her level? Was it only the Measles part of the test she was low

on?

Ursula - mom to (16) and Macey (13,CVID) http://www.caringbr idge.org/

visit/maceyholle man

groups (DOT) comFrom: bluetaelonatt (DOT) netDate: Fri, 5 Dec 2008

10:09:53 -0800Subject: Question about MMR titers

A post just reminded me of something, I picked up 's last labs at the

hospital and she's been on Ig for 2 years now but she failed the antibody tests

for measles. Shouldn't she be getting protection from measles from the

Ig? 8 CVID

[Guest guest]

,

What follows is not a link that is for PIDers. But it is insightful and may

provide some more information on this topic. It discusses an alternative

vaccine schedule.

http://www.askdrsears.com/thevaccinebook/labels/Alternative%20Vaccine%20Schedule\

..asp

________________________________

From: gillespie <julieg52@...>

Sent: Wednesday, December 10, 2008 3:31:26 PM

Subject: Re: age of PID diagnosis

Hi Barbara,

I appreciated your insight into vaccines. I wanted to clear up some

information that I think has gotten confused between postings. We have one son

with a PID and terminal infection, he has been diagnosed since he was 18 months

and is now 3. We have been to three different immunologists for him and he is

currently recieving treatment through Duke University. The vaccine information

I was seeking was for our newborn son. We will not know, like you said, for

some time if his immune system is functioning normally, so we are wanting to be

extra cautious with vaccines until we get a clearer picture and know that he

doesn't have CVID also. They have already told us no live vaccines and that we

can put in place an alternative vaccine schedule for him, I just wasn't sure

which ones and how far to seperate the timing of them. Your opinion on that was

very helpful ! Just wanted to let you know that the vaccine question

was not for our sick son, but rather our healthy(so far) one.

Thanks!

From: Ursula Holleman <uahollemmsn (DOT) com>

Subject: RE: Question about MMR titers

groups (DOT) com

Date: Friday, December 5, 2008, 1:12 PM

yes. what was her level? Was it only the Measles part of the test she was low

on?

Ursula - mom to (16) and Macey (13,CVID) http://www.caringbr idge.org/

visit/maceyholle man

groups (DOT) comFrom: bluetaelonatt (DOT) netDate: Fri, 5 Dec 2008

10:09:53 -0800Subject: Question about MMR titers

A post just reminded me of something, I picked up 's last labs at the

hospital and she's been on Ig for 2 years now but she failed the antibody tests

for measles. Shouldn't she be getting protection from measles from the

Ig? 8 CVID