Re: Re: New member - (daughter w/possible IgA deficiency

Posted September 9, 2002 · September 9, 2002

- this is Ursula again. My daughter Macey has low IgA but also has low

IgG and low IgM along with subclasses and

antibody responses to the Prevnar vaccination. I'm going to assume that since

your daughter is 2 that she's possibly

had the Prevnar vaccination. If so then you may want to check her levels of

antibody response. If she did not mount

antibodies in her system to the vaccination then there may be an underlying

antibody deficiency and further treatment

and medical management would be necessary. Not all doctors think of testing

this response. Macey was initially

diagnosed by her pulmonologist in 97 and he ran the IgG, IgA, IgM, IgE and

subclass levels. Along with some T-cell

studies. He had not even thought of looking to see if what little immune system

she did have actually worked right.

That's what the antibody responses tell you. They could also test levels to see

if she has responded to her other

vaccinations.

IgA deficiency can affect the sinuses, respiratory tract and GI system.

Anything lined with mucus (which is what IgA is

typically found in). The doctor was right in stating that there is very little

treatment except careful management and

sometimes they will put the patient on prophylactic antibiotics (to prevent

infections instead of waiting to treat them

when they develop). My daughter was on these for 4 years (along with

immunoglobulin therapy which helped her antibody

problem).

SELECTIVE IGA DEFICIENCY

http://www.primaryimmune.org/library/handbook/Selective%20IgA%20Deficiency.pdf

I'm not sure if you've found the IDF site yet but this has a patient/family

" friendly " summary of IgA deficiency.

What labs were initially run on ?

Ursula Holleman

Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

Posted September 10, 2002 · September 10, 2002

,

Hello, You will do just fine with all of this. I have a set of twins with

CVID and several other problems too. This web site is the one place that I felt

any comfort at. They have been great about answering any of my questions and

they are like a family. When ever it gets to be to much I can vent and cryand

these people know just exactly what I am feeling. It is very frustrating to be

told all of this info and all you want to do is crawl in a hole but just

remember you have to be strong for her. Yes I would find a pediatric

immunologist as soon as I could and have them look over everything because like

Ursula said there needs to be a through check of her immune system. As far as

oulling her out of preschool I would try my hardest not too. The only reasoon I

say that is because my daughters have now been isolated ofr two years and that

is very hard. I would wait to make htat decision until you can talk to an

immunologist and get their oppinon on that. The girls doctors pulled them out

of society and it is a daily stuggle for them and me. They do not attend church

school or anything else for that matter but that is because of their other

problems in with the immune defficency they don't handle society very good.

They are seven and wiegh 30 pounds and havebeen at that for two years. We are

going out to Duke next week for another consaltation with Dr. meyers. I would

reccomend finding a doctor that takes you and your situation seriously. I f you

have questions about this your doctor should answer them all. Well I have to

go check n my girls. and please don't think that the worst could

happen because every child is differant and my girls have other problems too.

Tweed wrote:Hi. My 2-yr-old daughter has had a cold or ear

infection for

the past 8 months. This past January we moved from Colorado to

Florida, which is when the constant infections began. The doctors

assumed it was due to allergies, because many people who never have

had allergies develop them when they move to Florida because of the

constant growing season, humidity, mold, etc. In March she was in

the hospital with pneumonia, and since that time her breathing has

been very irregular. They put her on Zyrtec, which didn't seem to

help at all. I couldn't understand how it could be allergies because

the allergy medication wasn't taking care of the problems. The

doctor kept insisting it was normal for a 2-yr-old who WAS NOT in

daycare to be sick constantly.

I finally got a referral to a Pulmonary Specialist, who did the blood

screening test and her IgA was too low. They followed up with a

second blood test, which was " under 13 " ; they told me that's as

specific as the test gets ... ? They couldn't do the saliva test

because she's so little she doesn't understand how to spit, and the

bulb syringe can't extract enough saliva to test, apparently. The

Specialist said she does not have allergies, but a constant cold due

to the Selective IgA deficiency. He also said she has asthma and put

her on Pulmicort 1x/day and Nasacort Nasal Spray. He told me there

is no treatment, and nothing I can do to keep her from getting the

constant colds and ear infections.

I got rid of her Primary Care doctor after hearing this, because when

I called the office to talk about the results the specialist gave me

they wouldn't put the message through to her. They told me if I

wanted to talk about test results that another doctor ordered that

I'd have to call them (can you believe that one?). We have an

appointment with the new Primary Care doctor this week, and I think I

should ask for a referral to a Pediatric Immunologist?

I go back and forth between thinking " she simply has a slightly

weakened immune system, and she'll just catch more colds than other

people " to " I'm scared that she's going to have a lifetime of medical

problems " . My most immediate fear is that she's going to end up in

the hospital with pneumonia again or have a bad asthma attack; the

Pulmonary Specialist wonders if her " pneumonia " , which the doctors in

March never would confirm until the 4th day because they weren't sure

what she had, was really just a bad asthma attack.

I wonder if I need to take her out of the 2-morning-a-week Preschool

Program she just started because she'll catch everything the other

children have, or if we just live life the same as we have been.

Will vitamins help? Could the swimming pool be part of the ear

infection problem, could water in her nose be irritating the colds,

or is that simply due to the deficiency? Do they recommend that IgA

children receive a flu shot? I've read almost everything I can find

on the Internet, but I have some questions that seem so ignorant

simply because I don't really understand how the immune system

works.

I know some children are much sicker, and sometimes I feel guilty

worrying so much when IgA is probably not as severe as many other

conditions. Anyone have any opinions/information/experience they

could share with me?

Thanks so much. I'm so glad to have a place to vent some of these

concerns!

> - please feel free to tell us more about your daughter. What

lead the doctors to test her immune system? There

> are many families here with IgA problems (my family included) and

I'm sure many would be happy to chime in and answer

> any questions you may have.

>

> Ursula Holleman

> Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD,

Diabetes Insipidus, colonic inertia)

> http://members.cox.net/maceyh

>

> Immune Deficiency Foundation - Peer Contact for GA

> http://www.primaryimmune.org

>

> /

>

> Re: File - emaillist.txt

>

> First Name:

>

> Immune Deficiency diagnosis (confirmed or suspected): Suspected

Selective IgA Deficiency

> Child's age: 2

Posted September 10, 2002 · September 10, 2002

:

Welcome to the group! I wanted to comment on a few things in your post. I

hope I don't sound like a big fat know-it-all, I'm just trying to let our

experience benefit you so you don't have to find out everything the hard and

slow way.

First of all, don't feel guilty about worrying about your daughter when " all "

she has is IgA deficiency. First of all, something that cannot be treated is,

to me, very frustrating and stressful. Plus I can tell you from firsthand

experience that when you mention IgA def, you often get NO RESPECT from the

ER doctors, as if it's no big deal and so common and nothing to be concerned

about. Well, excuse me doctor, but I'd like to trade places with you and see

how you feel if it's YOUR child who is sick all the time, whether it's due to

IgA def or something " bigger " . A sick child is a heartbreaking thing, no

matter what the cause. Plus while there are some people with IgA def. people

who don't even know it, there are others for whom it is very troublesome.

I have also been told that it's possible to mistake an asthma attack with

pneumonia. But you usually hear something like that well after the illness,

so there's no way to know!

And it is absolutely NOT TRUE that a 2 yr old can't have the salivary test.

My daughter had the salivary (secretory) IgA test at age 1 & 2 and was

able to spit at 3. They can use a suction machine similar to what the dentist

uses and just keep working it around in the mouth until they get enough.

As far as there being " nothing you can do " to prevent illness, I'd disagree.

There are degrees of things you can do, from simple common sense germ-aware

things to full blown paranoia and isolation. The things that worked best for

us when was more vulnerable were:

1) Every family member must wash hands (keep Purell on a high shelf by the

door) the moment you walk in your front door no matter where you went, even

if just to the mailbox.

2) Everybody take off shoes the second you walk in the door

This way, you're bringing as few germs into your home as possible. While out

and about, it's a judgment call about how nuts to get. When wasn't

doing so well, I washed off (with antibacterial wipes) cart handles,

restaurant tables anything she was going to touch in public. I used Purell

after I touched anything in public, before I touched her or anything of hers.

She wasn't allowed to touch doorknobs or elevator buttons or toys or anything

in public. This is hard with a toddler, but we did it.

There was a period of time where was in isolation due to her problems,

this was dictated by the immunologist. So if some of our things seem wacky

it's because she was pretty bad off for a while. But I have to tell you, I

personally have never been healthier in my life as when we followed all those

precautions!! I never got a single cold from 1999 to last year!!!

Don't get too germ paranoid though. Maybe do the above stuff to see if it

helps. Back off a bit gradually to see if it makes a difference. But above

all, washing hands when you walk in your door is the most helpful.

I don't know what to say about preschool. 's immuno won't allow her to

go. That's a personal call but I think it's a given that being around groups

of kids exposes you to more illnesses. It also gives you great socialization

and experiences and fun!

We do give vitamins, Flintstones Complete or Sesame Street Complete, they

have iron. Don't do anything herbal without talking to a doctor, some herbal

remedies can be harmful to kids, especially those with immune problems.

Do get a flu shot, your whole family should. If there's another shortage, you

will be put at the front of the line by mentioning the immune disorder.

Have they done any other tests? I know the first thing they looked at with

was IgA, because the ped wasn't familiar with all the other stuff and

IgA is the most common disorder. But it turned out she had other deficits

too. Polysaccharide Antibody Deficiency often goes hand-in-hand with IgA

deficiency, and with all the ear infections, I would think this should be

ruled out. That's when they check your pneumococcal antibodies, then give the

Prevnar vaccine, then check again to see if you made antibodies.

Lastly, don't give up. When they did the secretory IgA tests on they

said she had NO IgA at all. That she'd never have any. But now she does!!

Maybe we were extraordinarily lucky or maybe the first tests were wrong. I'm

just saying don't give up hope, nothing's impossible and you're on the right

track for getting your daughter help.

(mom to , age 3-1/2. Currently has polysaccharide antibody def,

previously had transient IgG, IgA, t-cell & other defs)

Posted September 10, 2002 · September 10, 2002

Dear ,

There is one bacteria that Chlorine doesn't kill which can cause bad

gastrointestinal symptoms in kids with IgA deficiency because their bodies

don't have the protection that normal kids have if they swallow enough of it.

I think pools that are careful when kids do a " poop " accidently are the best

pools to attend (They close down immediately--do a cleaning and prevent

swimmers from swimming until they feel it is safe) I forget what my

daughter's gastro called it but I know others with better brains will know.

My daughter who is also IgA deficient has funky inflammation responses to

various chemicals as she gets sensitized to them. I don't know if this is a

because of IgA deficiency or because she has been on so many antibiotics and

other meds that she developed a chemical sensitivity that way. Anyways, she

gets skin rashes and sinus inflammation from being in the chlorine water. We

found that taking her to a pond up in Vermont to learn how to swim was the

only comfortable way that she could learn. The water is tested there for

coliform bacteria and we wouldn't go in if the count was high. I don't know

if this is safe in spite of the bacteria testing because I know that there

are other " baddies " in natural water. Hope this helps.

Martha (mom to Chrissy IgA deficiency, specific antibody deficiency,

bacterial endocarditis, 2 open heart surgeries, next 10/2/02 etc,)

Posted September 10, 2002 · September 10, 2002

Hi so you just can't get rid of the watermelon? Sorry for all the wait.

You sound like a very relaxed mom of a kid with PID. How did you do that?

Especially with all the contractions. I will be thinking of you this next

week. A full term baby and a relaxed mom. Make sure you write with questions

even if it is offline.

Also a comment on the Pneumovax and IgA .

Pneumovax is usually given after blood levels are drawn and then you wait 3-4

weeks and draw the levels again to see if a antibody response is initiated.

What is interesting is that Lucas at 2 had a poor response to 8 of the 12

serotypes. At four he had no response and was even lower that the pretiter

the last time. Secondly Lucas also had no IgA at 16 months and at 2. He now

has normal levels but has other issues with his immune system including no

response to the pneumovax, low total Bcell count, No antigen response to

Candida and a low Cd19 as well as low IgG, IgM and High IgE. My understanding

with the Prevnar is that if a child has some response to the Pneumovaxx then

they try the Prevnar vaccine to trick the immune system to respond. In

Lucas's case it did not appear helpful so he never got a Prevnar. What I am

getting at as I have reviewed Lucas levels and results over the past 5 years

I have been interesting in the interpretation of results. They hope they

will out grow the IgA problem and that is what we were told repeatedly. But

...... I have also heard that the IgA problem can be a precurser to CVID.

They cannot guess which ones will and wont but there is always hope. Lucas

for now seems to be one that will not outgrow the problem. Our immunologist

informed us ( granted we live in a County of about 170,000 people ) that all

the other kids he has treated with IV Ig have out grown it by about age 5 or

6 or they have had SCID and they have done a bone marrow transplant. Soo....

it looks like we are on a long road. BARBIE ( Lucas 6, PID)

Posted September 10, 2002 · September 10, 2002

Thank you so much to everyone who has answered my first message. You have all

given me so much info. to go to the doctor with, and I'm definitely going to get

a referral to an immunologist ... I even looked one up today, so when we go to

the doctor on Friday I'm going to tell them who I want the referral to! I knew

there had to be a method to perform a saliva test on a little one; I still can't

believe the lab and the doctor's office were clueless.

Thanks for the encouragement, too. The doctors (and even some of my friends)

acted as though I was crazy because I insisted that there was something wrong

with . It's not normal to have 5 ear infections and 8-10 colds over an

8-month period. I'm not happy that she has IgA deficiency, but at least we know

WHY now.

I'll be reading all your messages and I'm sure I'll be bugging you with more

questions! I do have one question that I mentioned before, and it sounds kind

of crazy but who knows? Because the IgA effects mucous areas, does anyone think

that a swimming pool can get sick? Our pool is chlorinated, of course, but

I'm just wondering if someone is swimming and is sick even if they don't know it

yet (and you know how kids let their noses run into it, pee in it, etc.; sorry

to be so gross, but it's a fact), do you think it could get into 's nose,

throat, ears and get her sick? Just a recent paranoia of mine ever since she

started getting sick so often. Everyone and everything is suspect now!

Thanks!

Re: Re: New member - (daughter w/possible IgA

deficiency