New and questions

[Guest guest]

Hi! My name is and this is my first post. I've been reading for

a few days now.

Welcome . I'm Ursula

I have a 7 year old son. Conner has been sick his entire life. When he

was 16 months old, he had tubes put in the first time. Before those

tubes came out, he started running extremely high fevers and his neck

would get swollen....looked like he had the mumps. They did blood work

and told me it was viral.

Many children, both PID and non-PID have tubes and adenoids out. Sometimes

several sets of tubes and sometimes the adenoids grow back and they have to

have them taken out again. Running a fever can be a good thing actually, it

shows that there is an immune response. It's about 50/50 on those PID

patients who run fevers and those who don't. The neck swelling was probably

lymph nodes, many PID patients have problems with these swelling in the

neck, under the arm pits, in the groin area. It can be very aggravating.

Our daughters ENT was actually the one who thought to test her system too.

He also sees my husband and tested his. Both have CVID. PID patients

generally fail a routine course of antibiotics for infections. Most courses

needed to clear infections for them run 21 days or more. Daily antibiotics

are prescribed by many immunologists but some primary docs aren't big

advocates of this protocol. It sounds like when he was initially worked up

they did a good job of testing.

Did they run any T-cell tests? CD4 or CD8 levels? Titers to MMR or Hib

vaccinations? Tetanus titer?

Some doctors who do prescribe the daily antibiotics like to rotate them

every so often to help with different organisms getting into the body. With

our daughter we have her daily antibiotic (Vantin) and then we still have

the " go-to " meds for acute infections. Her immunologist is aware of any

break through infections and re-evaluates her maintenance med if too many

happen.

The GI issues can be several things. He could have bacterial overgrowth of

the small intestines from repeated antibiotics killing off the good bacteria

in his stomach and the bad overwhelming the lining. He could have a

parasite such as guiardia. He could have C.Difficile from antibiotic use.

Or he could be low in IgA which lines the stomach and colon (or anything

else secretory) and he's set up to catch things much easier anyway. This is

where daily antibiotics are supposed to help too. But as mentioned above

they might cause a catch 22 by creating opportunistic problems.

Has he ever had a chest CT? PID patients newly diagnosed should have a

baseline set of several labs and films just to know what damage is there and

what starting point they're at. Especially if they're children newly

diagnosed. We initially thought Macey had asthma but what she turned out to

have is RAD (reactive airway disease). This is caused by lung damage from

sinus drainage aspirated and some bronchitis and pneumonia bouts. She has

problems with her breathing when she is sick with absolutely anything else

(even a skin infection) because her lungs " react " to stress in the body.

She definitely has problems when she has a sinus infection or ear infection.

And heaven forbid she have a chest infection. She's never had an actual

asthma attack and I'm thankful that her RAD can be worked with to keep it at

a gradual decline as opposed to true asthma that attacks quickly and can

kill in minutes. My mom has asthma and I've seen her stop breathing twice

from an attack. No thank you.

Schooling is constantly an issue with pediatric PID patients. Some

homeschool, some attend private and some do a mix of school and homebound

services. Some pediatric patients are full time in the school system too.

Macey started out in pre-k with a reduced week and a mask. Kindergarten was

a reduced week, no mask but then she had problems with fatigue and missed

January and most of February. 1st grade she went on a daily schedule but

missed 64 days due to illness and a GI surgery. 2nd grade she missed 30

days and 3rd grade she missed about 12 (10 were IVIG hospital clinic days).

4th and 5th grade were great except for some clinic appointments in Atlanta

that I couldn't schedule on breaks from school. It can get better.

Our oldest daughter was tested for PID because of several pneumonias

but found to have the healthiest system in the household.

Write down your questions as you think of them. You'll be so overwhelmed

and so focused on your son that they'll slip through your fingers. If

possible take someone with you who can take him out to the waiting room and

give you " alone time " with the immunologist. Write his answers down

(abbreviated of course). The person with you shouldn't be anyone remotely

close to your sons care. They'll want to stay and listen (in a good way of

course) or they'll quiz you on the way home and you won't have time to

decipher and sink in everything that is said. Understand too that you may

leave there more confused than when you came in and with more questions than

when you came in. The doctor may order more tests or completely redo those

that have already been done. Many immunologists have their own particular

labs that they use, some have different ways of running tests. Some put

more credence in certain labs over others. Diagnosis may take several

weeks, sometimes months and sometimes even years. The IDF says that the

average time to diagnosis is 8 or so years. That's usually in adult

patients but it can carry over to younger patients.

It sounds as if he could have CVID. The IgG deficiency is there and the

antibody deficiency. CVID stands for Common Variable Immune Deficiency. It

is usually diagnosed after

http://bioinf.uta.fi/idr/Diag_CVI.html

Common Variable Immunodeficiency (CVI)

Probable

Male or female patient who has a marked decrease (at least 2 SD below the

mean for age) in two out of three of the major isotypes (IgM, IgG and IgA)

and fulfills all of the following criteria:

Onset of immunodeficiency at greater than 2 years of age

Absent isohemagglutinins and/or poor response to vaccines

Defined causes of hypogammaglobulinemia have been excluded

Possible

Male or female patient who has a marked decrease (more than 2 SD below the

mean for age) in one of the major isotypes (IgM, IgG and IgA) and fulfills

all of the following criteria:

Onset of immunodeficiency at greater than 2 years of age

Absent isohemagglutinins and/or poor response to vaccines

Defined causes of hypogammaglobulinemia have been excluded

Spectrum of disease

Most patients with CVI are recognized to have immunodeficiency in the

second, third or fourth decade of life, after they have had several

pneumonias; however children and older adults may be affected. Viral, fungal

and parasitic infections as well as bacterial infections may be problematic.

The serum concentration of IgM is normal in about half of the patients.

Abnormalities in T cell numbers or function are common. The majority of

patients have normal numbers of B cells; however, some have low or absent B

cells. Approximately 50% of patients have autoimmune manifestations. There

is an increased risk of malignancy.

Further information Patient and Family Handbook For The Primary Immune

Deficiency Diseases by IDF.

Common Variable Immunodeficiency by The Modell Foundation (JMF).

I would suggest going to the IDF and Modell sites and getting their CVID

information. What part of the country are you from?

Ursula - mom to Macey (11,CVID) and (13)

http://members.cox.net/maceyh

Immune Deficiency Foundation http://www.primaryimmune.org

Pediatric PID email list

Modell Foundation http://jmfworld.org

[Guest guest]

Hi!!!

My daughter is 7 and she has a low IgG level. WE foubd this out in

June after numerous upper respitory infections, pneumonia and

constant complaint sof stomach problems. We tried the maintenence

antibiotic for about 2 months and it did not help her. We then

started the ivig treatments. They have helped tremendously. She

still gets occasional asthma flare ups but the stomach problems have

completely gone away. She does occasionally get an upper respitory

infection but nothing compared to what she used to get before the

infusions. I hope I answered some of your questions. I had the same

questions when we were at the stage that you are at. I will keep

Conner and your family in my prayers.

God Bless!!!! Christy

>

> Hi! My name is and this is my first post. I've been reading

for

> a few days now.

>

> I have lots of questions but basically I'll share our story and

then you

> can tell me if my story is similar to yours or are you all dealing

with

> different things and I'm on the wrong list. And I won't be

offended if

> I've not found the right group yet.

>

> I have a 7 year old son. Conner has been sick his entire life.

When he

> was 16 months old, he had tubes put in the first time. Before

those

> tubes came out, he started running extremely high fevers and his

neck

> would get swollen....looked like he had the mumps. They did blood

work

> and told me it was viral. Until one day, he looked so pitiful the

> pediatrician sent us to the ENT for them to look at him. Not long

after

> he was taken back to surgery, took old tubes out, put new tubes in

and

> removed his adenoids and tonsils. About a year to year and half

later,

> he went back to surgery and his sinus cavities cleared out due to

> constant sinus infections. CAT scans showed the fluid was never

> leaving. Even though he'd go from one round of anitibiotic to

another.

> Basically for a long time, Conner would be really sick for about a

week,

> I'd take him to dr. they'd put him on antibiotic. About 48 hours

later,

> he was better. But sometimes before he even finished anitibotics

he was

> sick again. Other times it would be within a week after completing

that

> he was sick again. When he had his sinus surgery, the ENT

suggested

> testing his immune system. So while he was asleep they did a lot

of

> tests. When the tests came back, his pneumoccal titers were

totally

> missing and his IgG was low. We gave him a pneumo vaccine and then

> couple of months later, retested him and his pneumoccal titers were

> still low. They did transfer him to a asthma and immunology

doctor.

> The immunologist eventually put him on a maintenance dose of

> antibiotic. He's been on that for about 6 months or so now. And

that

> seems to have helped him! Since the first of the year he's been

sick

> about 5 - 6 times. Which is so much better than what we'd been

dealing

> with. He does have asthma that we struggle with on occasion. He's

had

> pneumonia a couple of times as well. He has never seen a gastro

doctor

> but he has a lot of problems with his tummy. He has an upset

stomach a

> lot! And he is extremely susceptible to a stomach bug. Last

August, he

> saw an orthopedic doctor due to a problem with his neck. He was

> eventually transferred to a neurosurgeon because in the MRI/cat

scans it

> was discovered that he also has a chiari malformation. A chiari

made us

> wonder if some of his days of general not feeling well is related

to his

> chiari. We've since learned to tell the difference between chiari

and

> sickness. In general, if he is sick he runs a fever. If he's just

> feeling bad and having a headache with no fever, we've decided it

was

> chiari.

>

> I made the decision to homeschool because I realized he would never

> survive in public school setting. And that has fit our family very

> well. I also have a daughter who is five. She is not sickly like

> Conner but she has muscular dystrophy. So she has her own set of

> special needs. I'm continually thankful that she does not have MD

and a

> immune problem. However, she has had 2 sets of tubes, adenoids and

> tonsils removed. We did check her immune system as well and

discovered

> her pneumoccal titers were low and gave her the pneumo vac as

well.

> Rechecked her and her pneumoccal titers did increase after

vaccination.

> But she is not nearly as sickly as Conner is.

>

> I've done no research on this stuff so I know very little about

what's

> going on and probably not even enough to ask informed questions. I

> guess I've just hoped that as he grew it would get better. I know

our

> immunologist has mentioned IVIG therapy but said that we would try

> maintenance antibiotic first. And the constant antibiotics seems

to

> have helped him. He's still sick but not like what he was. We see

the

> immunologist in August so I thought I'd research a little so I

could ask

> better questions.

>

> So here goes all the questions...

>

> Given my information....does my child have a Primary Immune

Deficiency?

> Is my story similar to any of yours? Are his stomach problems

related

> and do I need to bring that up to the immunologist? Do your

children

> struggle with asthma as well? What does CVID stand for and mean?

Any

> information you would like to pass on to me would be helpful. And

I'm

> sure I'll have more questions as I learn about this.

>

> Thank you so much.

>

>

>

>

[Guest guest]

Given my information....does my child have a Primary Immune Deficiency?

Is my story similar to any of yours? Are his stomach problems related

and do I need to bring that up to the immunologist? Do your children

struggle with asthma as well? What does CVID stand for and mean? Any

information you would like to pass on to me would be helpful. And I'm

sure I'll have more questions as I learn about this.

Your story sounds quite similar to our story: child with unexplained and

nearly constant illnesses.

Be sure that your immuno does a full series of immune tests: subclasses and

more. The subclasses are more important than overall IgG level. How is

your son's IgA?

Document with dates and symptoms every single illness. Go as far back as you

possibly can. Pull medical records if necessary to refresh your mind. I

would not personally be comfortable with 5-6 illnesses in six months.

On the positive side, after adjusting to IVIG treatment, Rebekah has been

remarkably well. How well? As in one or two infections a year!

{{{HUGS}}} I think you've found the right place.

Pam

mom to 4

Rebekah, 6, CVID

who, by the way, just had her first completely normal CBC!!!!!

[Guest guest]

, Welcome!

You came to the right place and will feel right at home here. = )

My daughter is Dani. She is almost 5 years old and also suffered with chronic

ear infections (never got rid of effusion until IVIG). ENT wanted tubes but she

crashed with a GI infection at the same time (storms coming in from all

directions) so we focused on the life threatening one. She was toxic and we

ended up getting her to an immuno (our nth expert) who put her on IVIG at the

end of a 20 min. office visit.

It took about 2 years for her to heal and she is now a different child. She

sleeps, eats, and gets sick a few times a year (and gets over them!!!) but I

homeschool her so that helps. We might put her in school later but, for now, we

are having so much fun with her at home (we do lots of field trips) and I

suppose that I am making up for lost time. I gave up my career to take care of

her and am just starting to work again.

She is currently classified as CVID (panhypogam - low IgA, IgM, IgG with low T

and B cells). Still continues with leg aches and annoying gut issues now and

then but it is all managable. She is not on antibiotics -- she is quirky and

does not tolerate them. We have learned to be aggressive in her care and

figured out what meds are essential for to function at her best -- and leave the

rest. We are still learning and you will probably see me post about the gut. =

)

Welcome!

mom to CVIDer

[Guest guest]

Hi . Welcome to the group.

The problem with diagnosing immune disorders is that many of them

present with very similar symptoms. X-linked agammaglobulinemia (XLA),

for example, can behave very much like common variable immune

deficiency (CVID) wich looks a whole lot like Chronic Granulomatos

Disease (not usually abbreviated). The symptoms you described could

also be Di Syndrome (also not usually abbreviated). Figuring out

the true source of the problem is more often a process of elimination

than a simple set of tests.

Regardless of what your son has, this is a good place to come, ask

questions, ask questions, and gain insights.

Another resource you should look into is the Immune Deficiency

FOundation, which has a nice set of online booklets describing the

most common inherited immune disorders. http://www.primaryimmune.org/

and http://www.primaryimmune.org/pid/whatis_pid.htm .

-- (45 year old XLA patient & biologist)

>

> Hi! My name is and this is my first post. I've been reading for

> a few days now.

>

> I have lots of questions but basically I'll share our story and then

you

> can tell me if my story is similar to yours or are you all dealing with

> different things and I'm on the wrong list. And I won't be offended if

> I've not found the right group yet.

>

> I have a 7 year old son. Conner has been sick his entire life.

When he

> was 16 months old, he had tubes put in the first time. Before those

> tubes came out, he started running extremely high fevers and his neck

> would get swollen....looked like he had the mumps. They did blood work

> and told me it was viral. Until one day, he looked so pitiful the

> pediatrician sent us to the ENT for them to look at him. Not long

after

> he was taken back to surgery, took old tubes out, put new tubes in and

> removed his adenoids and tonsils. About a year to year and half later,

> he went back to surgery and his sinus cavities cleared out due to

> constant sinus infections. CAT scans showed the fluid was never

> leaving. Even though he'd go from one round of anitibiotic to

another.

> Basically for a long time, Conner would be really sick for about a

week,

> I'd take him to dr. they'd put him on antibiotic. About 48 hours

later,

> he was better. But sometimes before he even finished anitibotics he

was

> sick again. Other times it would be within a week after completing

that

> he was sick again. When he had his sinus surgery, the ENT suggested

> testing his immune system. So while he was asleep they did a lot of

> tests. When the tests came back, his pneumoccal titers were totally

> missing and his IgG was low. We gave him a pneumo vaccine and then

> couple of months later, retested him and his pneumoccal titers were

> still low. They did transfer him to a asthma and immunology doctor.

> The immunologist eventually put him on a maintenance dose of

> antibiotic. He's been on that for about 6 months or so now. And that

> seems to have helped him! Since the first of the year he's been sick

> about 5 - 6 times. Which is so much better than what we'd been dealing

> with. He does have asthma that we struggle with on occasion. He's had

> pneumonia a couple of times as well. He has never seen a gastro doctor

> but he has a lot of problems with his tummy. He has an upset stomach a

> lot! And he is extremely susceptible to a stomach bug. Last

August, he

> saw an orthopedic doctor due to a problem with his neck. He was

> eventually transferred to a neurosurgeon because in the MRI/cat

scans it

> was discovered that he also has a chiari malformation. A chiari

made us

> wonder if some of his days of general not feeling well is related to

his

> chiari. We've since learned to tell the difference between chiari and

> sickness. In general, if he is sick he runs a fever. If he's just

> feeling bad and having a headache with no fever, we've decided it was

> chiari.

>

> I made the decision to homeschool because I realized he would never

> survive in public school setting. And that has fit our family very

> well. I also have a daughter who is five. She is not sickly like

> Conner but she has muscular dystrophy. So she has her own set of

> special needs. I'm continually thankful that she does not have MD

and a

> immune problem. However, she has had 2 sets of tubes, adenoids and

> tonsils removed. We did check her immune system as well and discovered

> her pneumoccal titers were low and gave her the pneumo vac as well.

> Rechecked her and her pneumoccal titers did increase after

vaccination.

> But she is not nearly as sickly as Conner is.

>

> I've done no research on this stuff so I know very little about what's

> going on and probably not even enough to ask informed questions. I

> guess I've just hoped that as he grew it would get better. I know our

> immunologist has mentioned IVIG therapy but said that we would try

> maintenance antibiotic first. And the constant antibiotics seems to

> have helped him. He's still sick but not like what he was. We see the

> immunologist in August so I thought I'd research a little so I could

ask

> better questions.

>

> So here goes all the questions...

>

> Given my information....does my child have a Primary Immune

Deficiency?

> Is my story similar to any of yours? Are his stomach problems related

> and do I need to bring that up to the immunologist? Do your children

> struggle with asthma as well? What does CVID stand for and mean? Any

> information you would like to pass on to me would be helpful. And I'm

> sure I'll have more questions as I learn about this.

>

> Thank you so much.

>

>

>

>

[Guest guest]

,

Your story sounds just like my daughters. She is now 16 and doing IVIG for

the past 13 years and doing ok on the most part. She never had the gut

problems but very gassy. I just wanted to say welcome to the group and NO

question is stupid. This is how we all learned. Just remember we are not

doctors and we are just giving our opinion and what we have learned. Hope

this helps.

Lorri ( 16 CVIG)

Re: New and Questions

>

[Guest guest]

Hello Everyone,

I am happy to have found this group!

My NP put me on Ioderol after testing for complete hormone panel.

The test showed that I had very high levels of cortisol (stress hormone. Proior

to that I have had hyperthyroid for three years. I was only taking one 12mg?

tablet of the loderol a day with no problems for several months. Then my

symptoms increased, (itching, rapid heartbeat, lost most of my muscle mass,

prolapsed uterus,trembling,hair thinning etc...

My MD tested the 4t and tsh, 4t was quite high and tsh was low.

She said I was on my way to having a " thyroid storm " . I started beta blocker to

slow my heart down and a anti thyroid drug which took several weeks to work. I

do feel better now but do not want to go the radioactive route to kill my

thyroid gland. So I started taking the Loderol again and after two days my heart

is beating out of control, and skipping beats again. Any one with any experience

with hyperthyroid?

thanks! Teri