Re: Re: New Group Member Saying Hi

[Guest guest]

Only if it is the dead virus. Never give a PID the live virus flu mist.

Sam (Hyper IgM Syndrome - low/no IgA, very low IgG, normal to high IgM) has

never had a problem getting the flu shot. Some years he has had two shots, two

- three months apart, as he loses his IgG so rapidly.

As or sometimes more important for the rest of the family to get it.

My husband refuses to get the shot (he HATES needles), but has only gotten the

flu once in our 12+ years of marriage. My health improved quite a bit after

starting to get them. I used to get the flu every year, followed by an extended

bout of bronchitus. It would literally take me almost 3 months to get well.

Not everyone has the same results, but it has helped me significantly.

God bless,

Wenoka

Re: New Group Member Saying Hi

Is it safe for a child with IgA deficiency to get a flu shot? I

wanted to get one for my daughter because last flu season she caught

mycoplasmic pneumonia TWICE in 3 months and after that of course she

got ear and sinus and other residual infections, etc. To top it off

I would get sick too from taking care of our child so everyone was

pretty miserable this past winter. I am hearing from the weather

people that this winter will be harsher than the last one and from

the health services organizations that this year the flu is going to

be just as bad if not worse than the strain we had last year (which

was killing healthy kids) so I was thinking of getting our child a

flu shot but I am scared now because from what I've read, my daughter

does not produce enough of the antibodies to fight off upper

respiratory illnesses so I don't want to give her of all things a flu

shot (respiratory disease). But you mentioned that everyone in your

household got a flu shot -- was this safe for the child you have who

has the immunodeficiency?

I cant' get a flu shot because I am currently pregnant with our soon

to be second child and the flu shot is dangerous to the baby. So I

am bracing myself for the illness, which, if I catch it, I can't go

near our daughter.

Thank you for mentioning that your child is doing ok and able to go

to school regularly, that really helps us out a lot. I am glad that

the preschool my daughter attends is very strict about hygeine --

they constantly wash everyone's hands, the place is kept spotlessly

clean, the toys are all cleaned, they do not administer any

medication of any kind to the children in order to discourage parents

who have even mildly sick kids from bringing their children in to

school, and if they see a kid is sick they are really good about

separating the child temporarily and making sure the parents are

called to pick the child up as soon as possible. Still, kids playing

together in close quarters in the winter are going to get sick and

get each other sick and since my child seems to have an immune system

issue, there is only so much anyone can really do.

Thank you though for your post. I am a nervous wreck. I try not to

show it to anyone but inside I am absolutely terrified and so worried

that I can't sleep at night. I am grateful that we are learning

EARLY that our child has an immune system issue before things get

much worse. I was told that sometimes children grow out of IgA

deficiency, maybe we will be fortunate in that regard but if we

aren't of course I love my baby and I will do whatever I need to get

her the proper care.

(Also we are not sure yet if it is IgA or something else like CVID --

they are checking all the subclasses of the IgG in this next set of

blood tests to see what is going on and we have yet to get the test

results back.)

Best wishes,

Dayann

> I can relate. My daugther was 22 months old, seemingly healthy,

and suddenly she was breathing a breath a second while she was

sleeping. She ended up in the hospital for 4 days, without ever

getting a clear diagnosis. Then I had to fight with the pediatrician

for her to see a Pulmonologist, who is the one who diagnosed her with

asthma and Selective IgA Deficiency. The nurse and staff of the

pediatricians office acted as though I was crazy (prior to her

diagnosis by the Pulmonolgist) because we were in there so much.

After she was diagnosed I switched pediatricians.

>

> Initially it was so scary, but I joined this site and everyone

made me feel so much better. Her diagnosis was not the end of the

world as I felt when they told me. Since getting treatment for the

asthma and knowing to keep her away from sick kids, asking the

teacher in preschool to be a fanatic about handwashing and telling me

if a child is at school sick, etc., I think we've been able to

control some things better (at least I FEEL a little more in

control). She is in 4-yr-old preschool this year, and so far in the

month she has been in school she hasn't missed a day.

>

> I do get frustrated in the winter months when she gets ear

infection after ear infection, and they start talking about tubes

again, but I give her her asthma medication daily and her nosespray,

and hope for the best. We all get flu shots, and hope we're spared

this winter from nasty viruses and infections.

>

> There are so many here who go through so much more than we do, so

I really can't complain! I just get worried about when she is in

elementary school and starts missing so much school!

>

> Good luck, Dayann. We're thinking of you.

>

> , Mom to , 4, Selective IgA Deficiency, Asthma, Chronic

ear/sinus infections and Connor, 6, Lucky, healthy little guy

>

>

> ----- Original Message -----

>

>

>

> I am sure other folks here can relate, which is why I joined

the

> group. I could really use a little support or at least a group

of

> parents who have some clue as to what I am talking about -- no

one

> else understands all this IgA, IgG, IgG2, CVID, etc., etc.

unless

> they themselves have been there.

>

>

>

>

[Guest guest]

Yes, IgA Deficient kids should get a flu shot, as should the entire family

(although in your case you can't).

And I'm still hoping she'll outgrow the deficiency. She was tested a few

months ago, and it was still the same (barely existent IgA, but because it

wasn't zero, apparently there is some hope). The doctor is going to test her

again when she turns 5 next year. I've heard 6 is the age when it might happen,

so I'm crossing my fingers.

Hang in there!

Is it safe for a child with IgA deficiency to get a flu shot? I

wanted to get one for my daughter because last flu season she caught

mycoplasmic pneumonia TWICE in 3 months and after that of course she

got ear and sinus and other residual infections, etc. To top it off

I would get sick too from taking care of our child so everyone was

pretty miserable this past winter. I am hearing from the weather

people that this winter will be harsher than the last one and from

the health services organizations that this year the flu is going to

be just as bad if not worse than the strain we had last year (which

was killing healthy kids) so I was thinking of getting our child a

flu shot but I am scared now because from what I've read, my daughter

does not produce enough of the antibodies to fight off upper

respiratory illnesses so I don't want to give her of all things a flu

shot (respiratory disease). But you mentioned that everyone in your

household got a flu shot -- was this safe for the child you have who

has the immunodeficiency?

I cant' get a flu shot because I am currently pregnant with our soon

to be second child and the flu shot is dangerous to the baby. So I

am bracing myself for the illness, which, if I catch it, I can't go

near our daughter.

Thank you for mentioning that your child is doing ok and able to go

to school regularly, that really helps us out a lot. I am glad that

the preschool my daughter attends is very strict about hygeine --

they constantly wash everyone's hands, the place is kept spotlessly

clean, the toys are all cleaned, they do not administer any

medication of any kind to the children in order to discourage parents

who have even mildly sick kids from bringing their children in to

school, and if they see a kid is sick they are really good about

separating the child temporarily and making sure the parents are

called to pick the child up as soon as possible. Still, kids playing

together in close quarters in the winter are going to get sick and

get each other sick and since my child seems to have an immune system

issue, there is only so much anyone can really do.

Thank you though for your post. I am a nervous wreck. I try not to

show it to anyone but inside I am absolutely terrified and so worried

that I can't sleep at night. I am grateful that we are learning

EARLY that our child has an immune system issue before things get

much worse. I was told that sometimes children grow out of IgA

deficiency, maybe we will be fortunate in that regard but if we

aren't of course I love my baby and I will do whatever I need to get

her the proper care.

(Also we are not sure yet if it is IgA or something else like CVID --

they are checking all the subclasses of the IgG in this next set of

blood tests to see what is going on and we have yet to get the test

results back.)

Best wishes,

Dayann

> I can relate. My daugther was 22 months old, seemingly healthy,

and suddenly she was breathing a breath a second while she was

sleeping. She ended up in the hospital for 4 days, without ever

getting a clear diagnosis. Then I had to fight with the pediatrician

for her to see a Pulmonologist, who is the one who diagnosed her with

asthma and Selective IgA Deficiency. The nurse and staff of the

pediatricians office acted as though I was crazy (prior to her

diagnosis by the Pulmonolgist) because we were in there so much.

After she was diagnosed I switched pediatricians.

>

> Initially it was so scary, but I joined this site and everyone

made me feel so much better. Her diagnosis was not the end of the

world as I felt when they told me. Since getting treatment for the

asthma and knowing to keep her away from sick kids, asking the

teacher in preschool to be a fanatic about handwashing and telling me

if a child is at school sick, etc., I think we've been able to

control some things better (at least I FEEL a little more in

control). She is in 4-yr-old preschool this year, and so far in the

month she has been in school she hasn't missed a day.

>

> I do get frustrated in the winter months when she gets ear

infection after ear infection, and they start talking about tubes

again, but I give her her asthma medication daily and her nosespray,

and hope for the best. We all get flu shots, and hope we're spared

this winter from nasty viruses and infections.

>

> There are so many here who go through so much more than we do, so

I really can't complain! I just get worried about when she is in

elementary school and starts missing so much school!

>

> Good luck, Dayann. We're thinking of you.

>

> , Mom to , 4, Selective IgA Deficiency, Asthma, Chronic

ear/sinus infections and Connor, 6, Lucky, healthy little guy

>

>

> ----- Original Message -----

>

>

>

> I am sure other folks here can relate, which is why I joined

the

> group. I could really use a little support or at least a group

of

> parents who have some clue as to what I am talking about -- no

one

> else understands all this IgA, IgG, IgG2, CVID, etc., etc.

unless

> they themselves have been there.

>

>

>

>

[Guest guest]

My rule is, if the doctor treats you like an idiot and the office staff is

rude, change doctors. None of us need to tolerate that type of behavior; we

have enough going on in our lives.

Regarding antibiotics, many just don't cut it. We have had to go different

rounds with anitibiotics until we find one that stops the infection. Last

winter was on antibiotics continuously (something crazy like 12 times in a

row) until we found one that worked.

Good luck! 's Mom

Re: New Group Member Saying Hi

P.S.

Thank you so much for mentioning that the doctors thought you were

nuts. I am not glad that happened to you but I feel so much better.

So many times I was telling them that something was wrong, and that

this was not asthma but something else, and I kept bringing her in

and saying " this antibiotic is not going to work, we have used it

before and she will get sick two days after finishing the course of

treatment " and they would not believe me and sure enough it would

happen. I had it out finally with her pediatrician and switched

doctors because I just knew in my gut that something was not right

and that is how we ended up finally seeing a pulmonologist and thank

God he is a very good specialist and really LISTENED to what I was

saying about our child's situation and he is closer to pinpointing

the real issue we are having.

And of course if a kid is sick it is mom's fault. People started

lecturing me about handwashing, assuming that we don't follow good

hygeine when actually I am a clean freak, especially when I saw my

daughter was always getting sick I started Lysoling things, etc.

Then there were people who said I didn't feed her a proper diet, and

people who said my child's immunity was down because I failed to give

her fish oil every winter (what does fish oil/cod liver oil have to

do with your genetics?? does fish oil suddenly make blood cells

mature into antibodies? people are so very ignorant!)

Then there were people who said I didn't bundle my child up enough or

keep my house clean enough or love her enough. Of course if I love

her more than I do (if it were possible to love her any more than I

do already) that will just immediately miraculously cure her sinus

infection! yea, right...

What is this fascination doctors have with blaming moms instead of

listening to them and doing the job of assisting the patient? If I

wasn't crazy when we started, by the time I switched pediatricians I

was damned near there from all of the above. I feel guilty enough,

thinking it was my gene, my fault that my kid's quality of life is

diminished because of an immune deficiency. I didn't need any more

of it, especially not from a so-called professional.

I think a lot of pediatricians just assume parents are dumb or

exaggerating and don't really listen or treat parents as though they

might actually be right and that is so frustrating.

Also frustrating is the three ring circus that is the medical

insurance industry, but I won't even go there right now. I am

stressed out enough without talking about that aspect of it.

It is so nice to get messages from people who understand all these

feelings. I can't thank you enough just for that. I started

thinking maybe I was crazy and overprotective and a bad mom. I am so

glad to know it was never my fault.

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

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[Guest guest]

Me again ... just wanted to note that 's asthma only occurs with sickness,

so don't rule out that your daughter has asthma. Asthma is induced by different

things, such as sickness, exercise, allergies, pollutants, stress, etc.

My daughter was diagnosed with asthma but I think that was a mistaken

diagnosis because the breathing problems only occurred when she

caught a residual infection of some kind, so I am not sure she really

has that.