Re: Levels

[Guest guest]

Donna,

Hi, I got your e-mail and it reminds me of some of what I went through before

starting IVIG. I'd been told by a local immunolgist (who I now think is more

of an allergist than an immunologist) that I only had IgA deficiency and that

I should just go home, not worry about it, and call him in 3 months. Well,

that made me angry b/c I'd come to see him because, like Walt, I was sick

" all the time " with chronic sinus infections that had come to surgery and

were debilitating - I had trouble working and taking care of my son b/c I was

so sick and tired.... and after doing some reading, I asked him about IVIG

and he said " NO WAY - not for you, you could die from a reaction " and he

scared me, BUT, I was so sick of being sick that I kept pursuing it and

finally got in touch with Gail from our group and I was referred to a

different immunologist. My new immunologist ran more complex tests (not just

levels) and found that I have a specific antibody deficiency - I don't make

antibodies to certain types of bacteria and he recommended the IVIG. And, the

IVIG is working for me. I'm not catching every bug that's around and I'm

starting to come off the antibiotics that I've been on forever..... so,

that's my story and my two cents - hope it's helpful. I just know from my

reading and talking to people that there are other things besides

immunoglobulin levels that they should check for if someone is " sick all the

time " .

Anne - CVID, mother of Sam (IgA deficiency, CVID?)

[Guest guest]

Anne,

I have printed out your e mail to show to Walt's pediatrician. It is scary

how similar you and Walt sound. He has been sick all his life and we count

the days he's not sick instead of the days he is. His files at the docs

office has about 350 pages, all of course are visits, test results,

operations, etc. He had sinus surgery last year and his ent says he may need

it again but his allergist/immunologist says it's allergies and he wont need

surgery. All I know as a mother is that I am so tired of him being sick and

in pain. I think 7 months is to long for a 6 year old child to live with a

sinus infection that is making his life and mine " miserable " ! We have been

getting alot of rain lately and his arthritis has been acting up as well. He

asks me to carry him or let him sit for a while when we go somewhere because

his " legs hurt " . If everyone would like to close their ears for a moment, I

would like to vent my frustrations........ I HATE DOCTORS! Sorry, but I feel

better now! Hope everyone is having a good day and my prayers are with you

all!

Donna & Walt-iga absent-asthma-chronic everything

[Guest guest]

Hi Donna,

I feel for you and Walt... somehow being sick when your 33 is much easier

than when your 6.... I had another thought.... what about encouraging your

immunologist to consult with one of the expert immunologists that the Immune

Deficiency Foundation has set up for consultation - I know they have some

kind of agreement with 4 or 5 of the big name doc's to consult with doctors

over the phone... see if you can ask Gail who they are.

Also, if it helps, I don't make antibodies to the polysaccharide bacteria and

these are tested by having the child get a Pneumovax vaccine and then waiting

a month and drawing antibody titers - most of the 'big name' doc's prefer to

have their own laboratories run the test b/c it's a particularly sensitive

test and prone to mistakes...

The immunologist I'm seeing now (the one who listened to me) did these tests

on me and recommended IVIG. Now we are in the middle of doing these tests for

my son, because he is 2 and has trouble with bad sinus infections that don't

heal.... we're waiting for the test results to come back.

Anyway, hope this is also helpful...sometimes, I think of things later after

I write my first e-mail

Anne- CVID, mother of Sam

[Guest guest]

Anne,

Hi, thanks so much for the advice. I did mention conferring with the other

docs to Walt's doc and he looked at me like I was nuts. I could tell he was

thinking that he is the doc and he knows what he's doing! I even had the docs

names(thanks to those of you who have given me info to take to him!). I went

to the visit so prepared. I had a folder with the patient family handbook

printed out, a list of receipts showing Walt's visits and what they were for,

a list of all major illnesses he has had that I could remember(typed out of

course!), and although I have no idea what all this means, I asked about

Quantitive Specific igg4 allergen test, pneumovax response level test,

neutrophil/study test, rh factor(which I am rh negative), and iga, igg, igm,

ige, and all igg subclasses. I went so prepared! The docs names I gave him

was Dr Hostoffer at the Rainbow Babies & Childrens Hospital of Cleveland,

Dept. of Imm.(and phone#), and the Consult w/Specialty Doctor(and phone#).

Did I leave anything out?

About the pneumovax- the ped had given Walt the vaccine about 3 years ago and

she said he can only have it every 5 years. So he can't have it again and be

tested for another 2 years. He also said even if he could be tested that

there was not a place close to us that he would trust to do the test

correctly. He said it is a " very involved test " . I guess the biggest problem

I have is finding a good doc that I can trust to listen to me and answer my

questions(in plain english!), that our insurance will cover. Our insurance

does not cover many specialty docs and the cost of these visits are very high.

Thanks again to all the help everyone has given me. I have no idea if it has

done any good with this new doc but at least I am more informed about Walt's

condition and for that I am extremely greatful!

Donna & Walt-iga absent-asthma-chronic everything

p.s. I forgot one thing the doc told me that I found to be very amusing. He

said to keep up the meds and do what I am doing that it " seems to be

working! " I would sincerely hate to see what life would be like if it were

not " working! "

[Guest guest]

Anne,

Hi, thanks so much for the advice. I did mention conferring with the other

docs to Walt's doc and he looked at me like I was nuts. I could tell he was

thinking that he is the doc and he knows what he's doing! I even had the docs

names(thanks to those of you who have given me info to take to him!). I went

to the visit so prepared. I had a folder with the patient family handbook

printed out, a list of receipts showing Walt's visits and what they were for,

a list of all major illnesses he has had that I could remember(typed out of

course!), and although I have no idea what all this means, I asked about

Quantitive Specific igg4 allergen test, pneumovax response level test,

neutrophil/study test, rh factor(which I am rh negative), and iga, igg, igm,

ige, and all igg subclasses. I went so prepared! The docs names I gave him

was Dr Hostoffer at the Rainbow Babies & Childrens Hospital of Cleveland,

Dept. of Imm.(and phone#), and the Consult w/Specialty Doctor(and phone#).

Did I leave anything out?

About the pneumovax- the ped had given Walt the vaccine about 3 years ago and

she said he can only have it every 5 years. So he can't have it again and be

tested for another 2 years. He also said even if he could be tested that

there was not a place close to us that he would trust to do the test

correctly. He said it is a " very involved test " . I guess the biggest problem

I have is finding a good doc that I can trust to listen to me and answer my

questions(in plain english!), that our insurance will cover. Our insurance

does not cover many specialty docs and the cost of these visits are very high.

Thanks again to all the help everyone has given me. I have no idea if it has

done any good with this new doc but at least I am more informed about Walt's

condition and for that I am extremely greatful!

Donna & Walt-iga absent-asthma-chronic everything

p.s. I forgot one thing the doc told me that I found to be very amusing. He

said to keep up the meds and do what I am doing that it " seems to be

working! " I would sincerely hate to see what life would be like if it were

not " working! "

[Guest guest]

,

Walt has never been on IVIG. Since talking with the group I feel he would

benefit from having IVIG. His new doc says IVIG is only for kids who are " on

their deathbed " . Only the ones who are hospitalized most of the time and

can't fight off anything should be getting this. The blood drawn was to

retest all his levels and some allergy tests. They were going to test for

allergies on his back but I had given him benadryl for hives the night

before. The nurse on the phone said it was ok to give it to him and that they

could work around him having his benadryl. The doc said absolutely not so we

have to go back another time for the allergy tests. They are going to test

for some allergens through the blood test but not many. They took 10 large

vials and said he gave enough blood to have been a donor! Needless to say he

was dizzy and a bit weak the rest of the day. But.... they let him get up and

go home right away! Go figure! I think I could be the leader of the new " I

Hate Doctors Group " .

Donna & Walt-iga absent-asthma-chronic everything

[Guest guest]

Donna,

This dr sounds more like an allergist. Some drs do believe that it must be a

critical situation. But not all - I can't remember what state you are living

in. Let me know and I will try to assist you in finding someone who might

help more. Maybe Iredale could help too. She coordinates her care

through her general dr and Dr. Miles in Texas. He is doctor who also has XLA

(primary immune deficiency). She might explain how she has made such a

situation work. Let me know what I can do to help. You can call me at

.

PS - It took several drs to figure out what was going on with Kinsey. And I

think they can still test titers to pnemovax even if the vaccine was given to

him 2 years ago - it will show his protective level now. I also know that

some kids get the vaccine every year. So I would revisit that issue with the

dr. And finally, some people make antibodies that don't work right and the

levels seem ok - others have memory problems in the immune system and they

lose their titers after a period of time. I sat in on a lecture at the AAAAI

meeting that suggested that IVIG is beneficial for some " sickly " children who

may just have transient low levels of IGg.

I am rambling - Call me if I can help

Gail

Kinsey - CVID

IDF Volunteer

[Guest guest]

Donna,

I'm so sorry that you are going through this! I would try to find another

Dr. Obviously this one is not listening to you. I know that it sounds

harsh, but why put yourself through such aggony. Now you (and the rest of

us) are much more educated about this illness. We know what works and what

doesn't. We know which tests show what, and where to go with them. Use

your knowledge to benefit Walt. I'm sure gail can help you find another

immunologist. I had a similar experience w/a Dr. and I stayed with him and

put myself through hell for a long time. Looking back, I can kich myself

for not leaving him earlier.

It just sounds that you Dr. is talking such drastic measures with out all

the facts. Taking him off IVIG w/out running all the tests. Also, hasn't

Walt been getting IVIG all along? Someone correct me if I'm wrong, but

isn't that blood that they drew is going to have false readings. It will

read thae antibodies of the 100's of donors. Not Walt's. You have to be

off IVIG for at least 90 days before IVIG is out of the system.

Just for kicks, What does Walt think about going off IVIG? Zach would be

devistated. He absolutely recognises that it makes him feel much better.

Be strong! I'll say an extra prayer for you.

Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD,

chronic sinusitis, IVIG,

[Guest guest]

Donna,

I'm so sorry that you are going through this! I would try to find another

Dr. Obviously this one is not listening to you. I know that it sounds

harsh, but why put yourself through such aggony. Now you (and the rest of

us) are much more educated about this illness. We know what works and what

doesn't. We know which tests show what, and where to go with them. Use

your knowledge to benefit Walt. I'm sure gail can help you find another

immunologist. I had a similar experience w/a Dr. and I stayed with him and

put myself through hell for a long time. Looking back, I can kich myself

for not leaving him earlier.

It just sounds that you Dr. is talking such drastic measures with out all

the facts. Taking him off IVIG w/out running all the tests. Also, hasn't

Walt been getting IVIG all along? Someone correct me if I'm wrong, but

isn't that blood that they drew is going to have false readings. It will

read thae antibodies of the 100's of donors. Not Walt's. You have to be

off IVIG for at least 90 days before IVIG is out of the system.

Just for kicks, What does Walt think about going off IVIG? Zach would be

devistated. He absolutely recognises that it makes him feel much better.

Be strong! I'll say an extra prayer for you.

Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD,

chronic sinusitis, IVIG,