Question

[Guest guest]

Quentin - so glad to hear that you enjoyed your trip to Georgia. I'm sure

was a most gracious hostess for our fair state. Macey was

discharged Friday morning so we were able to return to Macon by lunchtime.

It seems to be an every time thing now for them to keep her overnight. The

2 hr ride doesn't seem to help matters and I think it makes them alittle

nervous to send her home after she has a reaction.

Sometimes when people use the reply function to answer an email it

automatically attaches a copy of the original post. Some people consider

this redundant and delete the original message and just type their reply.

This helps to shorten the digest issues for digest subscribers. Some people

will " snip " out the portions that only apply to what they are replying to .

I do this on occasion. The relative text will begin with a snippet ie. <<<

and end with the other side >>>. This lets people know that there was text

before and following the selected reference. I hope that helps and is not

too confusing.

Ursula - & Macey (4 yr old w/CVID) mom

http://home.att.net/~maceyh/

[Guest guest]

Quentin,

What you have described has happened to me several times. In fact, I am

certain that I do not always get all the mail and I also metioned that some

of my mail has not gone through. I mentioned it to Ursula some time ago. I

am at a loss as to what the problem could be.

Autumn

[Guest guest]

Me too!! I thought it was just MY computer!

Beth

At 05:06 PM 1/22/00 EST, you wrote:

>From: Autti@...

>

>Quentin,

>

>What you have described has happened to me several times. In fact, I am

>certain that I do not always get all the mail and I also metioned that some

>of my mail has not gone through. I mentioned it to Ursula some time ago. I

>am at a loss as to what the problem could be.

>

>Autumn

>

>---------------------------

[Guest guest]

Hey gang! I am so psyched- at an open house I was holding today, this couple

came in and saw me snacking on my protein eight bar and my open Muscle Media

mag and that started some conversion. Come to find out, the guy works out

where Larry , ( the grand champ from Porters div.) and said all these

great things about him and I told him I had been trying everywhere to get

hold of this guy (he's a builder) and he took one of my cards and said he

would give it to Larry and ask him to call. That would be cool- would love

to take him to lunch and pick his brain! By the way, day two on Betagen and

no hair on my chinny-chin-chin .

[Guest guest]

Cyn: It's such a small world hey. I bet he does call, be sure to let

us know everything.

Hair starts on the nuckles first then to the chin. No just

joking, did you look? Happy Training " Taz "

cynthiatbrook-@... wrote:

original article:/group/bodyforlife/?start=4048

> Hey gang! I am so psyched- at an open house I was holding today,

this couple

> came in and saw me snacking on my protein eight bar and my open

Muscle Media

> mag and that started some conversion. Come to find out, the guy

works out

> where Larry , ( the grand champ from Porters div.) and said

all these

> great things about him and I told him I had been trying everywhere to

get

> hold of this guy (he's a builder) and he took one of my cards and

said he

> would give it to Larry and ask him to call. That would be cool-

would love

> to take him to lunch and pick his brain! By the way, day two on

Betagen and

> no hair on my chinny-chin-chin .

[Guest guest]

Autumn, I haven't heard about this happening, but it sounds positively

awful for ... as if he didn't have enough else to deal with,

problems of incontinence have to be incredibly embarrassing. I hope

that you get to the source as soon as possible, so that this can stop

for him. I can't remember the date of his Nissan, but did the problems

get dramatically worse after the surgery? Just wondering, because the

autonomic nervous system (that's the parasympathetic and sympathetic

branches of the nervous system) is involved in detection of bladder

expansion, and in urination stopping and starting by controlling the

bladder sphincters (if I remember the details from anatomy, there are

two -- one voluntary, the other involuntary -- the voluntary is

controlled by somatic nerves, and you have to think about that part, but

I'm fairly sure that the involuntary is controlled by the autonomic

nervous system). I can't remember the specific details of it all, but I

can look up more if necessary -- I'm fairly sure I remember where I

could find the info, if it would be helpful to you. The reason I am

saying this is that I seem to remember that you said the vagus (a nerve

involved in the parasympathetic part of the nervous system) was damaged

in the Nissan, and that was what was causing the achalasia. Do they

think the bladder issues may be related to the esophageal motility

issues? It's a different section of the vagus (the part that controls

esophagus is high, and the part that controls the bladder is much

lower), but I thought perhaps it was possible that the problems were

connected through this nerve. I know you guys are juggling a number of

illnesses and symptoms, and I'm not sure how treating this would play

into the asthma and achalasia, but it's worth asking the urologist and

making sure he understands all the complications of the fundo, as the

nerve damage may be playing a part, and it may be very helpful for him

to know about the achalasia and its cause. Good luck... take care (and

a big hug to )...

-

[Guest guest]

Alissa has had this problem off and on. When she is very tired or drinks a

tea or simulant drink before bed she will not wake up. Also if she is so

obsorbed in what she is doing she has no warning or when she has a bad

infection and she is exhausted.

Hope this helps,

annette

>From: Autti@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: question

>Date: Sat, 19 Feb 2000 20:44:09 EST

>

>I have a question....Over the last few months has been progressively

>losing his bladder control. As of today he has lost about 75%. He says he

>has no " warning " signal whatsoever. It is anytime of the day, all day

>long.

>We are going to see a urologist on Monday and then the

>allergist/immunologist

>on Tuesday. It is unclear at this point as to whether or not this an

>endocrine problem (he is steroid dependent, so that is very possible) or a

>urological condition. Sadly, we can not take him off of steroids at this

>time as his lung function remains poor.

>Has any ever experienced this in their child. I should note that we have

>seen the pediatrician and it her strong opinion that this is a

>physiological

>problem verses psychological. The problem started back in November with

>small

>urine leakage and has gradually progressed to complete loss of bladder

>control with multiple accidents daily. is deeply humiliated by this.

>Any thoughts would be appreciated.

>

>Autumn (Mark Cd5-Cd19/ ASA, A1A, GERD)

______________________________________________________

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[Guest guest]

,

Thank you so much for your response. Your email has prompted many questions.

A good friend of mine who happens to be a PA, also suspects that the Nissen

could have something to do with this. The answer to your questions is yes,

the symptoms became progressively worse post surgery. PLEASE send me any

information. If it would be easier I could even call you about this. I

sincerely appreciate your help with this situation.

Thanks again,

Autumn

[Guest guest]

Dear ,

Thanks...I agree, I think it is more likely a physical problem with .

His health is really not great right now. does not look good at all

today. This is the second time in two weeks that he has developed very bad

swelling in his face, hands, and feet with a fever...something that he hardly

ever gets. He also looks very " allergic " with deep shiners, so maybe it is

just his allergies adding to the problem. He goes in tomorrow so we will see.

I really appreciate your input as well Annette...I hope we get some answers

soon.

Autumn

[Guest guest]

Hey Kit, You are doing fantastically. Thanks for the supplement info and

keep on keeping on. Great fat loss - well done. Lean.

[Guest guest]

Hi Kit, Welcome to the group. Tell me please, do you still have high BP?

One of my goals is to reduce mine and get off medication. It's a slow

process but I'm moving forward.... Lean.

[Guest guest]

Once again, you have achieved great results. This program will have been

worth it for this result alone! Nope, I don't reckon you'll have any trouble

from your doctor! Congrats, Lean.

[Guest guest]

Deb, I can feel your determination! Good for you! Don't beat yourself up

about losing focus the first time. I entered last yr. and lost steam after

the first 4 wks and couldn't even tell you why! You know, it could be easy

for me to get discouraged, I have been faithful to the program, am in week

11, and tho the results have been fabulous, I sure don't have the stomach

those champions have! Three babies later it just will take me more time. My

bodyfat when I started was 41.6% and at four weeks it was 38.8%. I found

that to be discouraging and have chosen to go by the tape measure. I will

have my fat tested at the end of the round and let you know. How old are

you? I think that can be a factor in the rate of bodyfat lost too.

Leaner has had great results in that area, I'm sure you'll hear from her.

Have you set your goals and do you have at least one picture to visualize

that you keep on your fridge or maybe bathroom mirror? Can you find a friend

to be accountable to in this, like a walking or workout partner? Put these

things in motion and your opportunity for success will be enhances. Go watch

the video again. I have found a great magazine for women's fitness called

OXYGEN. See if you can find that. Get on your mark, get set........Oh, and

BEGIN WITH THE END IN MIND! cyn

[Guest guest]

Hey Glenda, What fantastic results you have had! 18.5 inches off your body?

That's amazing! Wanna share any secrets? Congratulations. Leaner.

[Guest guest]

I have challenged myself each week to lift/push/run just as

much as I possibly can. The first week, I wondered if I

would ever get past the dumbbells 15 lbs. and below...now

we've had to purchase additional dumbbells...up to 50 lbs.

There is so much muscle definition under the flabbiness

that is still remaining on my body that I wish I could melt

the top layer off to expose the good stuff underneath; know

what I mean? That part gets frustrating, because I KNOW

IT'S THERE just waiting to be exposed completely. We

finish our challenge on the 8th of April and have already

decided to start again.

Much success to you all!

Glenda

__________________________________________________

[Guest guest]

in an article in OXYGEN a women's fitness mag, tips for competition tans

include using Jan Tana and or Pro Tan. Most say to go to a tanning bed a few

times first to get a base tan. They recommend applying the paint the night

before, wearing pjs that completely cover you up while you sleep, then

showering the next morning with it on to get a more natural look. cyn

[Guest guest]

,

you will be surprised how many infections the kids will get even in between

infusions. the infusion is at it's best right after they get it but it does not

block them from getting sick. hang in there we just had ivig monday and josh has

been so sick since. you can never tell/.

carol mother to josh 5yr cvid,asthma,steroid dep. and much more

Question

I know this has been discussed in the past, but how long does it usually take

to see the full effects of the IVIG--such as reduced amount of infections?

is starting another possible one, and his next infusion is still 2 weeks

away. He's never before had this sort of " breakthroug infection " , so I'm not

sure what to expect. I set up his appt. with his primary for Mon. a.m. because

I wanted to make sure that this isn't a cold--symptoms have been hanging arounf

for over 2 weeks now and seems to be getting worse. Any ideas. Thanks.

-mom to ,7, dysgammaglobulinemia, etc.

[Guest guest]

,

josh gets down right before infusion time and we live in texas and there is a

shortage all over in this state for around 2 yrs now

Question

Hi everyone,

I hope everyone is feeling a bit better right now!! I had a question...is

it common for the kids to start having sings of infection right before

infusion time? It seams that every Thursday or Friday before the Monday of

infusion, starts to feel a bit rotten and acts like he has a little

bit of a cold. Do your kids do that? He is just about 26 pounds (or

getting close to it) and he gets 6 grams if IVIg. Sometimes I wonder if he

is getting enough.

Also, I keep hearing about shortages of it on the list here...I have never

heard about it at the hospital and I assume that there are alot of people

getting it at our hospital. So is it just in areas or is it only if your

doing home infusions or what?

Chat later...the hubby is bord so he wants to play a game ;o)

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

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

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.

[Guest guest]

I may be wrong in this if I am someone will catch it but I believe

that if they do an igg level 1 hour before an infusion and if the igg level

is above 650 they are getting enough ivig..if it is below that they made

need to increase it..Tony has an igg level done every three months...I

notice that about a week before infusion time Tony becomes a little tired

and I see a slight difference in his activities..Tony has been on ivig for

8 and a half years..they have never tried to take him off of it and he has

received no vaccines since diagnosis at 18mths..take care... mom to

Tony

Question

Hi everyone,

I hope everyone is feeling a bit better right now!! I had a question...is

it common for the kids to start having sings of infection right before

infusion time? It seams that every Thursday or Friday before the Monday of

infusion, starts to feel a bit rotten and acts like he has a little

bit of a cold. Do your kids do that? He is just about 26 pounds (or

getting close to it) and he gets 6 grams if IVIg. Sometimes I wonder if he

is getting enough.

Also, I keep hearing about shortages of it on the list here...I have never

heard about it at the hospital and I assume that there are alot of people

getting it at our hospital. So is it just in areas or is it only if your

doing home infusions or what?

Chat later...the hubby is bord so he wants to play a game ;o)

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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.

[Guest guest]

This answer is coming two week later. When we are filling up their tanks with

IVIG you should see an improvement in 3-6 months. sorry but it takes that

long, and please remember IVIG is only IgG, so these children are still

suseptible to chronic sinus and other mucosal surface infections, gi tract

etc. IVIgG will help the lungs and the blood system so hopefully no septic

infections, it keeps the bad guys away but not everything. Prior to IviG the

life expectancy was much lower with many succombing to chronic lung disease,

IVIG has helped immensely. But certain forms of PID put you at risk for other

diseases eg:CVID higher risk for cancers, XLA and similar forms higher risk

for autoimmune disease. All diseases are tied directly to the immune system

and its response to antigens if we can unlock the mystery of the immune

system we can cure diseases that begin there.

Take Care,

Lynne

[Guest guest]

Remember IGG levels are a guide and are relative. You can have a patient

with an IGG level of 700 and be septic and another with a level of 500 and be

perfectly healthy. The main guide should be how is the child doing. If he

has breakthrough then you may need to increase the dose or the frequency of

the infusion. Let's not get stuck in a numbers game.

Later,

lynne

[Guest guest]

On Thu, 4 Jan 2001 10:10:28 -0500 Alan Svejkovsky

wrote:

> One more thing...Do any of the kids who are PID receive allergy shots?

(age 13, CVID, plus subclass 2 deficient) takes 8

injections every week. He had been tested, with inaccurate

results, multiple times as a young child. He had all the

symptoms of a severely allergic kid, but the tests did not

support the allergy theory. He was 9 years old when out of

sheer frustration we opened the phone book and tried to find

an ENT in a neighboring town while we waited in the 8 week

backlog for a consult at the closest children's hospital.

The " phone book " doc discovered that our son is severely

allergic to 65+ items. How could the test results be so

different?

While he does not enjoy all the injections, has not

had pneumonia in three+ years.

Worked great for but individual results may vary.....

On a positive note, had the wires removed from

his arm on Tuesday (eight weeks post break, four weeks

post surgery). He returned to school for the first time

since Dec 1 yesterday. He is in a brace, and will

hopefully be able to begin physical therapy mid month.

His health teacher has given him a ZERO in class for

every day he missed. Guess she and I will have to have

a little heart to heart talk, since the boy did every

single assignment she provided to us....

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

Conatser

conatser@...

[Guest guest]

Nica,

I have two children too, both with PID. So much for 10%. I was told over

50% when I was pregnant. According to what I was told it is autosomal

recessive (our type anyway) so that means both my husband and I are

carriers? Which would mean 25% chance if I remember my genetics

class.......hmmm?

Grace Caroline 8/14/97

Caelan 8/26/99

Re: Question

> Hi,

> My immunologist told me there is a 10% chance (during lifetime) same for

> the next generations and for parent (mom or dad). However I have two

> children and both have low IGG and one has also low IGA.

>

> Nica

>

> On Fri, 16 Feb 2001 10:01:38 -0600 " sandraray "

> writes:

> > What are the chances that the new baby will be IgG deficient as well?

> > My oldest child is non-PID, so I'm thinking the chances are 50-50.

> > Is that about right?

> >

> > Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def.,

> > asthma, chronic sinusitis, and allergies), and Duncan Avery due

> > 5/17/01

> >

> >

> >

[Guest guest]

, I hope Caelen has a speedy recovery now he is on the antibios, and

also that your little girl stays well despite the exposure to strep from the

party!

On the genetic issue, my two are the same as yours- both with a pid,and it

seems both my husband and myself are carriers as our own bloodwork came back

within range (except for my IgM). It has been explained to us if we ever had

another child there would be 50% chance of a pid.

[Guest guest]

,

Did you get a wrong number or what? Why did you think that this

group had anything to do in promoting any product from Melaluca or

any other company for that matter?

It has EVERYTHING to do with Taking Lipitor and Hating It, nothing

else. The group is here to complain and vent and voice our opinions

about this drug. It is not for promoting any products for a

marketing company.

Sorry for any confusion.

Ed

> I just joined the group, thinking that this group was created

by

> people who had problems with Lipitor and now

> taking Phytomega. Does this group have anything to do with

Melaleuca?

> Let me know. I'm trying to get more information and statistics on

the

> adverse side effects of Lipitor as a tool to promote Phytomega.

Thanks!!

>

> Flanagan

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