Another Question

[Guest guest]

In a message dated 2/8/2005 10:13:16 PM Pacific Standard Time,

yhwhworship@... writes:

http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/allergy/cvid.html

Wenoka,

Thank you for the links...this is exactly what I thought!! I have no idea

where this Immuno is coming from most of the time.

Sandi, Mom to , age 12. Polysaccharide deficiency, IgG1 subclass

deficiency, Tetrology of Fallot, Pulmonary valve transplant (2003), Mitral valve

stenosis, COPD, asthma, Carnitine deficiency, GERD, suspected Velocardiofacial

syndrome.

[Guest guest]

In a message dated 2/9/2005 7:14:31 AM Pacific Standard Time,

bunneegirl@... writes:

Don't quote me but I think I recall the doc saying CVID was a combination of

more than one Ig deficit, like low IgG AND low IgA?

--

This has always been what I thought, too. Bri has both Ig1 and

Polysaccharide deficiencies. I'm fairly certain it's CVID. Plus, he's had the

aches and

pains lately that go along with CVID. Either that or he's finally learned to

communicate his pain!!

Sandi, Mom to , age 12. Polysaccharide deficiency, IgG1 subclass

deficiency, Tetrology of Fallot, Pulmonary valve transplant (2003), Mitral valve

stenosis, COPD, asthma, Carnitine deficiency, GERD, suspected Velocardiofacial

syndrome.

[Guest guest]

In a message dated 2/9/2005 7:25:37 AM Pacific Standard Time,

mom2lilnick@... writes:

When I called the

IDF to question the dx they said that CVID used to be IgG, IgA and or IgM

but now it is being used to encompass a larger group of things.

Thanks, Amy!!

[Guest guest]

HAPPY BIRTHDAY, BRIAN!!!

Sorry it's late... if I'm not coughing I'm doped up on cough syrup!

(mom to , age 6, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 2, more dairy intolerant but very healthy!)

[Guest guest]

In a message dated 2/10/2005 7:06:26 AM Pacific Standard Time,

bunneegirl@... writes:

HAPPY BIRTHDAY, BRIAN!!!

Thanks, !! He still appreciated it

Sandi

[Guest guest]

In a message dated 3/17/2005 7:39:52 P.M. Eastern Standard Time,

uahollem1@... writes:

Macey is on Septra every day for maintenance and was diagnosed

Tuesday with Bronchitis ( her older non-PID sister has pneumonia so

it's no surpise that Macey got it).

Ursula, I hope Macey and get well soon! I know how happy you must be

for her getting a temp. I am still waiting on Brittany to be able to. I

sometimes wonder if she ever will.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Cheryl - Macey is on Septra every day for maintenance and was diagnosed

Tuesday with Bronchitis ( her older non-PID sister has pneumonia so

it's no surpise that Macey got it). By Tuesday night Macey was spiking a

temp (yes, my child actually had a temp HOOORAAYYY). At 104.8 I called the

ped who had seen her that morning (and had started her on Zithromax). But I

forgot she was off work for the afternoon, when I remembered this I called

the immunologist in Atlanta who told me to take her in for a CBC, CRP and

chest xray. CBC showed her usual no elevated WBC but a bacterial

differential and a CRP way too high. Chest film looked ok. Blood cultures

and urine are still brewing. So they kept her on the Septra, Zithromax and

gave her 2 gms of IV Rocephin and sent us home. Two days later she is

running no fever and went back to school. Meanwhile her sister poor thing

is having to weather through her nasty infection. Macey will have her labs

rechecked on Monday unless we hear sooner that the cultures were positive.

It is not unusual for a PID patient to need weeks of antibiotics to clear

infections. Whether to wait on changing the med would depend on symptoms.

Her treatment sounds right, we also are doing chest PT and nebs. Sounds

like the differing factor is the IV antibiotic.

Ursula Holleman

mom to (12 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

[Guest guest]

Janet - I truly believe it is because of the subcutaneous method. I believe

that we finally have enough of a constant level of IgG with no trough period

that she can rise to the occasion. But it still took almost 6 months of

doing it subq before we got to this. I'm hopeful that she will end up

clearing this soon.

Ursula Holleman

mom to (12 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

[Guest guest]

Cheryl:

With a PID pumpkin you always have to be aggressive " in case " it's something

bigger. But in case your doc ends up really feeling it's viral, I'll share our

story. Our household has had a run of a terrible LRI, this horrible chest

cold or bronchitis. Every one of us has had varying types and amounts of

antibiotics and nothing has helped.

I was wondering about whooping cough for two of us due to the uncontrollably

racking cough, the docs considered pneumonia for two others of us due to how

bad the lungs sounded (both chest x-rays were neg). I personally have been

coughing for two months straight, no exaggeration.

I've had abx twice, once after the first two weeks of it in case it was

bacterial, once recently because I also developed a double ear infection.

Nothing

has affected the cough except the passage of time. It's definitely better but

still there.

With your experience with pneumonia ( gets it at least a couple times a

year), you probably know what signs your daughter gets. I can tell you that

with our viral LRIs (I've decided they were all viral) the main clue was nobody

maintained a big fever or felt unwell enough to be bedridden. I was coughing

hard enough to wet myself but never had a fever. DH and had fevers but

only briefly. DH and I had wheezing, DH and had crackles. Little Kate just

had a cough.

Part of me hopes some of that info helps somebody and the other part of me

just wants to vent -- it's been a rotten couple of months!!

(mom to , age 6, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 2, more dairy intolerant but very healthy!)

[Guest guest]

Thanks again everybody, Aly's ped added 5 days of

steroids and then we have a followup on Monday.

Although we are seeing her asthma and new immune dr on

Friday so I might just hold out until then.

She sounded a little less wheezy this am(started the

Pred last night) so perhaps that is all she needed??!!

Thanks again, Cheryl

[Guest guest]

, Thanks, that actually sounds very similar to

what has ravaged our house too. Poor Aly is the only

one though that hasn't been able to kick it. She has

been sick since X-mas I think. Her's started with her

usual asthma stuff-coughing,wheezing,and low PFT's. We

did a 10 course of antibiotics and pred. Since then we

have done the week off antibiotics, two weeks on kinda

thing. She had a positive Pneumonia X-ray begninning

of Feb and then did 6 weeks of antibiotics-first

Bactrim then Omnicef. We were off for a week and then

whatever this is hit like a MACK truck. I swear I can

hear popping and crackling in her LLL and she had

diminished breath sounds there last friday-so it makes

sense.

Aly is odd though in that she rarely runs a temp.

Before her x-ray in Feb she only ran a temp for two

days and then was up and around, but X-ray confirmed

pneumonia in both lungs???? How she was up and around

I will never know. I think her body has just learned

to compensate?!

Anyway, Thanks for your story and I hope whatever

you guys are fighting head's for the hills soon.

Thanks,Cheryl

[Guest guest]

It seems like those that got this " bug " this winter really suffered with it no

matter what they did....Sorry....Hope spring hits soon!

Quoting " bunneegirl@... " <bunneegirl@...>:

>

>

>

>

>

> Cheryl:

>

>

>

> With a PID pumpkin you always have to be aggressive " in case " it's something

>

> bigger. But in case your doc ends up really feeling it's viral, I'll share

> our

>

> story. Our household has had a run of a terrible LRI, this horrible chest

>

> cold or bronchitis. Every one of us has had varying types and amounts of

>

> antibiotics and nothing has helped.

>

>

>

> I was wondering about whooping cough for two of us due to the uncontrollably

>

> racking cough, the docs considered pneumonia for two others of us due to how

>

> bad the lungs sounded (both chest x-rays were neg). I personally have been

>

> coughing for two months straight, no exaggeration.

>

>

>

> I've had abx twice, once after the first two weeks of it in case it was

>

> bacterial, once recently because I also developed a double ear infection.

> Nothing

>

> has affected the cough except the passage of time. It's definitely better but

>

>

> still there.

>

>

>

> With your experience with pneumonia ( gets it at least a couple times a

>

> year), you probably know what signs your daughter gets. I can tell you that

>

> with our viral LRIs (I've decided they were all viral) the main clue was

> nobody

>

> maintained a big fever or felt unwell enough to be bedridden. I was coughing

>

> hard enough to wet myself but never had a fever. DH and had fevers but

>

> only briefly. DH and I had wheezing, DH and had crackles. Little Kate

> just

>

> had a cough.

>

>

>

> Part of me hopes some of that info helps somebody and the other part of me

>

> just wants to vent -- it's been a rotten couple of months!!

>

>

>

> (mom to , age 6, dairy intolerant-related GERD -- currently has

>

> polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

> other

>

> defs... and also to Kate, age 2, more dairy intolerant but very healthy!)

>

>

>

>

>

>

[Guest guest]

It's been a tough winter for everyone. Glad it's about over. I can't believe

we're almost 25% through 2005!

My oldest (non-PID) has been having some weird symptoms. Took her in to the doc

- they sent off 10 different tests (took about 5 tubes of blood). The little

girl who in the past had to have 5 nurses and a doctor to hold her down to get

blood, and even then they couldn't until she passed out, did just fine.....and

we didn't even use her brother's EMLA cream. She's growing up!

Her CBC panel came back completely normal, but the test for Rocky Mountain

Spotted Tick fever came back positive. He said sometimes they have false

positives on it, but put her on doxycyclene as a precaution. Thank goodness her

adult teeth are in! I would have thought that a bacterial infection like RMST

would have shown up on the CBC. We still have about 4 tests left. Her mono was

negative this time! Hooray!

All three kids seem to have been coughing more as the week went on. My dad had

a nasty head cold, which - judging from my nose and throat, I've got it brewing.

I'm thinking that could be the source for the kids too. 8-(

I'd be in bed nice and early this Friday night, but the soccer uniforms are in

the washer and have to be dried before morning. Go team!

Hope everyone is well.

, get better!

God bless,

Wenoka

Re: Another question

It seems like those that got this " bug " this winter really suffered with it no

matter what they did....Sorry....Hope spring hits soon!

[Guest guest]

In a message dated 3/18/2005 8:23:26 PM Pacific Standard Time,

yhwhworship@... writes:

We still have about 4 tests left.

Wenoka,

I hope you're able to figure this out!! Thanks for the reminder that

winter is almost over, I really needed that! Infection-wise this is the worse

winter that Bri has ever had. Chronic isn't a strong enough word.

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), Mitral valve stenosis, COPD, asthma, Carnitine deficiency,

GERD,

suspected Velocardiofacial syndrome.

[Guest guest]

Hi , well if you have time to I'd say go for it (the bath salts and

bath bombs). You just never know what is gonna sell. On the $1 per oz of

soap, I think that is around about average but I cant say lest I be accused

of price fixing (wink). Give or take. No help to ya here am I?

Hey Old hats were once new hats too! LOL

Good luck! spose to be a real nice weekend

Shaye

another question

Ok, I got such great ideas from my first question that I'm going to ask

another. For my vendor table at the conference this weekend, all I

have ready to sell are CP soaps. Of course, I have sixteen varieties,

but it's just soap. I could probably whip up several batches of bath

salts and bath fizzies between now and Friday night. Should I bother?

I've never sold these things before, just offered them in gift baskets

that I've donated for charity raffles (and given to family & friends),

so I don't know how well they sell. Plus, it's been two years since I

did my last small craft show. So what do you think? If you do think

it's a good idea, what is the going rate for them?

I am still figuring about $1/ounce of soap. Is that still true? I'll

charge a bit more for the organic oil soaps, of course.

Okay, I guess that was more than just one question. I'm feeling a bit

frazzled now, as I'm realizing I don't have much time. I went to the

bank this afternoon and got my bills for change. I'm getting excited!

(Feeling kind of silly, though, as it sounds like most of you guys are

old hats at this show business!)

Thanks again,

" Be Impeccable With Your Word; Don't Take Anything Personally; Don't

Make Assumptions; Always Do Your Best. " - Don Ruiz

[Guest guest]

Thank you - I will look into it - I appreciate having a little more

direction!!!!!!

I don't know what his levels are - I know that are up and down - he's been

'severely neutropenic' at least on one occasion that I know of - and

neutropenic on other occasions - but I am not sure how bad it was - I was never

really aware of it being a problem until recently. I have all his labs - so I

guess I will go back and look at all the stuff over again and see what I can

figure out on my own - and then when I get to the immunologist in Boston - I

will ask his opinion and see what he has to say.

Thank you again for your thoughts and help

Stefani

(http://www.tickercentral.com/)

(http://www.tickercentral.com/)

[Guest guest]

Usually a box lunch is a sandwich and drink with chips. At least that is

what it has been here in MN at the IDF functions.

Since your child is getting sick and it take's awhile for him to bounce back

after his infusions it has a lot to do with the IGG levels and a few things

may need to be changed. I would recommend (as a parent) a follow up with

lab work right before his next infusion is due so they can look at his

trough IGG levels to see if they are in a safe range. His dose may need to

be adjusted, he may need infusions more frequently, or you may want to look

at sub Q administration because it usually does away with the peaks and

troughs and they have a stable count and usually don't get sick as much

because it is much more like how the body would produce it if it made it in

the first place. In Sweden they give it sub Q only and have been for 25

yrs. It is a newer way here in the US but it isn't new in the world. As for

the neutrophils I haven't read much about that so hopefully someone else can

add on that.

Take care

Amy J

Re: Another question

>Hi

>We live in the UK and my son has been neutropenic on/off since

>July last year,in December last year is when i first noticed it

>whilst in hospital with what was at first a mild infection and

>neutrophils where slightly below normal then within 12 hours they had

>gone to 0-5 NORMAL BEING FOR LAB 1-0 TO 8-0 FOR HIS AGE the lab had

>put a note on the bottem of the report to say they suggested

>neutropenia i queried this with the doc's and by two day's later the

>count had gone up but still very low end of normal so they did not do

>anything.

>Could you tell me what this mean's ??

>Also alway's seem's to get sick toward's the last week before

>his infusion is due has this anything to do with the neutrophil count

>it seem's that since i have gone through his medical record's and

>lab's the neutrophil count and white cell count goes very low each

>time and is needind IV antibiotics as the oral antibiotic's do not

>seem to work fast enough .

>

>Thank's for any help in understanding this one.

>Pat

>

>

>> Neutropenia is a 24/7 precaution problem in and of itself.

>Depending on the

>> level of the ANC (absolute neutrophil count) if he were to get sick

>while

>> neutropenic he might require more aggressive treatment including

>> hospitalization. I haven't heard of the protein problem.

>Hematologists

>> here handle neutropenia so that might be a good consult to seek.

>>

>> Ursula Holleman

>> mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes

>> Insipidus, colonic inertia)

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

>>

>> Immune Deficiency Foundation - Peer Contact for GA

>> http://www.primaryimmune.org

>>

>> IDF Patient/Family Handbook

>> http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

>>

>> /

>

>

>

>

>

>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:

/messages

>

[Guest guest]

Neutropenia is a 24/7 precaution problem in and of itself. Depending on the

level of the ANC (absolute neutrophil count) if he were to get sick while

neutropenic he might require more aggressive treatment including

hospitalization. I haven't heard of the protein problem. Hematologists

here handle neutropenia so that might be a good consult to seek.

Ursula Holleman

mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

[Guest guest]

Hi

We live in the UK and my son has been neutropenic on/off since

July last year,in December last year is when i first noticed it

whilst in hospital with what was at first a mild infection and

neutrophils where slightly below normal then within 12 hours they had

gone to 0-5 NORMAL BEING FOR LAB 1-0 TO 8-0 FOR HIS AGE the lab had

put a note on the bottem of the report to say they suggested

neutropenia i queried this with the doc's and by two day's later the

count had gone up but still very low end of normal so they did not do

anything.

Could you tell me what this mean's ??

Also alway's seem's to get sick toward's the last week before

his infusion is due has this anything to do with the neutrophil count

it seem's that since i have gone through his medical record's and

lab's the neutrophil count and white cell count goes very low each

time and is needind IV antibiotics as the oral antibiotic's do not

seem to work fast enough .

Thank's for any help in understanding this one.

Pat

> Neutropenia is a 24/7 precaution problem in and of itself.

Depending on the

> level of the ANC (absolute neutrophil count) if he were to get sick

while

> neutropenic he might require more aggressive treatment including

> hospitalization. I haven't heard of the protein problem.

Hematologists

> here handle neutropenia so that might be a good consult to seek.

>

> Ursula Holleman

> mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes

> Insipidus, colonic inertia)

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

>

> Immune Deficiency Foundation - Peer Contact for GA

> http://www.primaryimmune.org

>

> IDF Patient/Family Handbook

> http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

>

> /

[Guest guest]

Here's a page from Len's " Kombucha Balance " site that explains his

method of double bottling:

http://w3.trib.com/~kombu/KTBalance.shtml#Two%20Stage%20Bottling%

20Technique

If the whole link isn't clickable, cut-and-paste to your browser's

address bar.

Hope this helps,

Nori

> also I have heard of using a double bottling process but cannot find

any

> info on how to do this.

>

> Eliesa

[Guest guest]

--- <clairton63@...> wrote:

> Has anyone ever had this stimulator removed??? If

> so, is that recovery

> as bad as the one when they put it in????

I have had 2 explants. The recovery from the surgery

was unlike the implant. I did, however, have some

other complications not related to the stimulator -

but to to other medical conditions I have. Please

email me with any specific questions.

Anne in TX

[Guest guest]

I am still waiting to find out when I can have my trial if I decide to do it. I

am glad you asked this question. I am looking forward to hearing the answers.

What is a sympathectomy? Can anyone tell me what kind of questions they ask

for the psych evaluation prior to the stimulator?

- in Mass

another question

Has anyone ever had this stimulator removed??? If so, is that recovery

as bad as the one when they put it in???? I saw my 3rd neurosurgeon

today and he gave me the following options......Remove the stimulator

since it doesn't seem to be helping me and then he can get a MRI of my

thoracic area.........or leave it in and suffer.........OR they might

need to do another sympathectomy!!!!!!! I'm just beside myself. He

told me to think things over and let him know what I want him to do.

I have to tell you guys, I'm not sure when I'm going to " wake up " from

this nightmare here!

As always, I hope everyone's pain is a little more bareable as time

goes by!!!

------------------------------------------------------------------------------

[Guest guest]

On 7/2/2005 at 7:41:10 A.M. Central Standard Time you wrote:

Does anyone else out there feel their conditionaggrevated by sinus drainage/allergies?

, I have not heard that mentioned here on this board

that I can remember. Someone will correct me if I am wrong.

I think most here feel it is air that mixes with the salvia that

causes the foam. I know the first time I ever had the white

foam was in the emergency room where I had gone because

I could not breath and was gasping for air. That was when

I was diagnosed as having aspiration pneumonia.

That is another good question to add to your list for the

doctor.

Maggie,

Alabama

[Guest guest]

I have problems with the froth -- fondly known as the dreaded white foam -- or

sialereha (can't spell) -- it is mostly the accumulation of spit and other

fluids

that don't go down as well as the production of mucus by the esophagus to try

and coat things that are irritating it.

I tend to get it more at the end of a stressful day or when my LES is

particularly

closed up (which might be painless spasming)

Others will chime in.

Peg

> I had a chance to read Joan Pearse's Achalasia Pamphlet the other day.

> God rest her soul, she seemed like such a caring person and her

> pamphlet is very informative!

> I thought of another question to ask you all (not a very appetizing

> one, though). My husband rarely vomits, but many mornings spits up

> " froth " that Joan mentioned in the pamphlet. It is aggrevated by

> allergies and sinus drainage (more froth with allergy flare-ups and

> drainage). That's why the U of M doctor initially checked him for

> " eosinophilic esophagitis " which is an allergic condition, because we

> stressed the connection between allergies/sinus drainage and his

> symptoms. When he gets this froth coming up, many times spasms aren't

> far behind. Does anyone else out there feel their condition

> aggrevated by sinus drainage/allergies?

> He's had the froth this morning and we're hoping it doesn't

> progress into spasms and ruin the plans we have for the day (which,

> unfortunately, happens all too often). I hope you are all having a

> good weekend (and a nice holiday if you're in the U.S.)! Take care!

>

[Guest guest]

,

I would definately invite your daughter to go to weight watchers with you. Always make it an open invitation not a rule. When she sees you doing your program and improving your health, I'm sure that she will want to start also.

I'm sure with love, encouragement, communication and choices you both will succeed.

Perhaps get her involved in creating health meal ideas, it will educated her on eating habits and may make her into a budding Chef.

Blessings,

and <bronco2_mom@...> wrote:

I have another question...my 8 year old daughter is also overweight....honestly I think she knows she is on the chubby side...but I have never really came out and said your overweight. Once and while she will say I am fat mom and I will will say we both just need to get into shape....I know she would go for the walks with me either walking or riding her bike of course I dont know how long she could go..but I am starting out small anyway so it should be okay....she is really active she rides her bike and swims alot and is always playing with friends..I am sure its her diet....how so I put an 8 year old on a diet....should I have her do what I will be doing....example if I do weight watchers, or , etc....obesity does run on my hubbys' side of the family...my side not sure I was adopted.....any ideas would be great....thanks for listening...

No virus found in this outgoing message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 267.9.7 - Release Date: 7/28/2005__________________________________________________