Hi from Dale

[Guest guest]

JUST A QUICK ONE EMAIL LATER TONIGHT

Thankyou Dale and all who responded to my message took ill in space of

two hours at home whilst i was at the hospital,had to take him to hospital when

i got home so will fill you in later as on way back there now.

Pat

Dale Weatherford <dale@...> wrote:

from Dale, Mom to Katy, CVID, age 19

welcome to all the new members!

Pat, I was praying for you today and want you to know we'll be here

whenever you are ready to share your news. It's so hard when mommies

get sick. Know that we care.

In His service,

Dale

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]

JUST A QUICK ONE EMAIL LATER TONIGHT

Thankyou Dale and all who responded to my message took ill in space of

two hours at home whilst i was at the hospital,had to take him to hospital when

i got home so will fill you in later as on way back there now.

Pat

Dale Weatherford <dale@...> wrote:

from Dale, Mom to Katy, CVID, age 19

welcome to all the new members!

Pat, I was praying for you today and want you to know we'll be here

whenever you are ready to share your news. It's so hard when mommies

get sick. Know that we care.

In His service,

Dale

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]

from Dale, MOm to Katy, CVID, age 20

Becky -- how's Maddie recuperating?

Janet, how's Brittany?

In His service,

Dale

[Guest guest]

Dale - things went great. They infused 25 cc's in 2 sites over about an

hour. She had small pockets of fluid in her abdomen for about 3 hours after

but is actually up at my MIL's spending the night with a cousin. She feels

great. Needed no premeds and hasn't even thought of having a headache.

With Elamax she said she didn't even feel the needle being stuck in.

Couldn't have asked for a better day. We go back one more time next week

and then start at home.

Glad to hear 's infusion went well.

Ursula Holleman

mom to (11 yrs old) and Macey (8 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

In a message dated 7/7/2004 12:43:05 AM Eastern Daylight Time, dale@...

writes:

Katy goes in tomorrow for her

first Gamunex infusion. She's going into the hospital's infusion center

(and wants to go alone). My how they grow up!!!

Just wondering how everyone else in the group is doing.

Yes, they do grow too fast don't they! How long will Katy be home?

We just had our party for our son who graduated from high school. It seems

like he was just born. He is going to go to a local collage for two years. Then

off and away for another two. I'm glad he isn't leaving home yet. (LOL)

The part went good and Brittany felt good. She even danced at the party for a

long while. She was wore out the next day, but not sick. So I am very pleased

about that. She goes for her third infusion next week.

Tell Katy hi for me, and I hope she has a nice, healthy summer.

Janet, mom to Brittany, CVID, age 13

[Guest guest]

Oh, Dale, I didn't read your e-mail until just now, when I got back from the

doc and had already asked for a referral back to immunology!!! How

interesting. Perhaps I was guided to the decision even without having read your

message

yet! (your prayers got through!)

Thank you so much for your concern and your prayers -- they mean the world to

me.

(mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD,

dairy intolerant -- currently has polysaccharide antibody def, previously had

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

[Guest guest]

Dale, I was wondering about something you posted about registering your ped...I

did call the foundation and they took down my peds name but said that I need to

tell my ped about them and have him call them. I was just wondering what

exactly this " service " does?

Thanks for you help you are always to thoughtful. God Bless

Amy (mom to Bradley 2 years old, IGA Def, partial antibody def)

6 years old going on 13

Re: Hi from Dale

from Dale, Mom to Katy, CVID, age 20

, Mom to Connor -- yesterday morning I finally got around to

e-mailing IDF about the problem you mentioned. Yesterday afternoon I

got an e-mail from Phyllis that I posted last night. This morning I got

an e-mail from saying that she has implemented a new policy --

if they cannot get through to callers by phone -- they will ask for an

e-mail address so that they can contact you in some way to let you know

they want to respond. Like I said earlier -- this is a group that

really cares!!!

So once again, EVERYBODY -- if you have not called IDF to ask for their

free educational literature -- do so today. They also will answer

questions about PID, provide free genetic counseling, give you

information and resources about insurance, school issues, etc. They

provide a SAFETY NET program that guarantees a supply of IVIG in case of

shortage ( I recommend that you register for that even though there

shouldn't be a shortage in the future). They provide the Consulting

Immunologist program for your doctor. And they send out quarterly

newsletters to families and monthly newsletters to doctor who are

registered with them. Besides all this patient support they fund major

research, work on public policy at the national and state level on our

behalf, etc, etc, etc. So please call today and register not only

yourself, but your pediatrician and treating immunologist. That number

is 1-800-296-4433.

In His service,

Dale

Dale Weatherford wrote:

>from Dale, Mom to Katy, CVID, age 20

>

>, Mom to Connor -- I sent the excerpt in to IDF regarding the

>problems that you were having getting a response from them. Here's the

>relevant part of the response I received. The Immune Deficiency

>Foundation is here to serve you. Their goals are education and research

>but also to support the patient population. Please speak up if you ever

>get less than great response! I volunteer as does Ursula and many other

>members of this group and each one of them will tell you that it's a

>great group of people trying to make it easier for those living with PID!

>

>Here's Phyllis' reply:

>

>Dale, this summer, we have had some temporary receptionists answering

>the phones. Recently, reiterated the appropriate protocols in

>referring calls to make sure that we are responsive.

>

>If the patient wants to e-mail me at ps@... and provide

>their telephone number, I would be willing to contact them directly.

>

>Thank you for bringing this situation to our attention.

>

>With regards,

>

>Phyllis

>

>

>In His service,

>Dale

>

>

>

>

>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]

Hi Dale,

Thanks for helping me with the IDF. The last time I left a msg for I

think I must have sounded pretty frustrated and I asked her to email me if

at all possible. She emailed me yesterday and told me she had received an

email from a volunteer and thought it was probably about me and my inability

to speak to anyone at IDF for the last three months. I thought it was

pretty good that she made the connection. It's just impossible for me to

wait by the phone for days on a return call, especially with all of the

doctor visits that we've been dealing with. I believe that email is a much

easier way to communicate for a lot of families. I also think of the cost

savings of using email vs. long distance phone calls. mentioned

that she's sometimes on the phone for hours at a time with families - if I

were the IDF, I would highly encourage email usage! I'm the vice-president

of a national non-profit/support network and I've been wondering if we have

some similar issues that I might not be aware of. I'm considering adding

specific email directories on our website just in case we have other

families dealing with similar frustrations. Anyway, I appreciate you

helping me out and I appreciate your ongoing support!

Mom to Conner (10, Asperger's, mild CP, partial seizures, asthma, GERD, and

CVID),

Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (10, mild hearing loss/unaided),

and Kelsey - surviving triplet (8, hearing - but not listening!)

_________________________________________________________________

Get ready for school! Find articles, homework help and more in the Back to

School Guide! http://special.msn.com/network/04backtoschool.armx

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Amy, there are two different things that you could mean -- so let me

clarify.

IDF does a mail out of what is called the " Clinical Focus " to doctors

who are dealing with PIDs. I was under the impression that you could

give IDF your doctor's address and they would put them on the mailing

list. But -- just to be sure, I've sent an e-mail to Phyllis to clarify

that. So -- I'll get back to you.

IDF also runs the Consulting Immunologist program and you CANNOT get any

help from that unless you are a doctor. They won't talk to lay-people.

These are doctors who volunteer their time to answer questions from

other doctors and don't want to deal with us uneducated parents!

(notice the tongue in cheek!)

I'll let you know when I get an answer from IDF. I just know that in

the past we registered the patient and as many doctors as were dealing

with them in all the different specialties.

In His service,

Dale

The Hands wrote:

>Dale, I was wondering about something you posted about registering your

ped...I did call the foundation and they took down my peds name but said that I

need to tell my ped about them and have him call them. I was just wondering

what exactly this " service " does?

>Thanks for you help you are always to thoughtful. God Bless

>

>

>

[Guest guest]

In a message dated 9/25/2004 7:22:03 PM Eastern Daylight Time,

knmb2@... writes:

I have regular joint pain that travels in pairs....thumbs, pointer fingers,

ankles, hips, knees....and EXTREME fatigue. My symptoms flare up and flare

down.... (usually couple good months, couple BAD months) been 5 years nowII

Sounds like you may have fibromyalgia. It is an auto-immine. I have it. Has

the DR ever mentioned it to you before?

Janet, mom to Brittany, CVID, age 13

[Guest guest]

Dale,

Hi, I think it was my message that got deleted. Yes, my Dr. said to watch my

kids and myself and my husband for any obvious string of illness that seems out

of the ordinary. I also said that I think I have something brewing in myself.

First, I believe I may have been IGA deficient as a child. Fit the

description...no official diagnosis...I out grew it. However, as a kid, I had

pneumonia at least 5 times, bronchitis about 100....on and on. Anyhow...now I

have symptoms that change a lot, but tend to mimic Rheumatoid arthritis, thyroid

disease, etc. So I am paying attention now to the potential connection.

I have regular joint pain that travels in pairs....thumbs, pointer fingers,

ankles, hips, knees....and EXTREME fatigue. My symptoms flare up and flare

down.... (usually couple good months, couple BAD months) been 5 years now.

Tested twice, as recent as last year. Question for the nurses out there. If

you are to develop an auto-immune disease, do you test positive right away?

Should I put my nagging thoughts to rest since I had two negative test results

in five years or can they develop at their own pace and show up when they feel

like it??? Just curious. Drs. said I must be depressed since nothing shows

positive so they put me on wellbutrin. Well, I didn't think I was depressed,

but what do I know...so I took it....Guess what? The pills made me depressed!

So I gave them back! I think I need to just go to medical school and figure it

all out myself because no one out there can!

I am so sorry I am ranting...got off track a bit...any insight though would be

helpful!

Thanks a bunch!

Kim, Mom to 8 (CVID)

Hi from Dale

>

> from Dale, Mom to Katy, CVID, age 20

>

> Okay, I was reading my mail and I lost a letter from someone

> talking

> about her doctor telling her to be on the lookout for illness in

> her

> other children because IVIG can cluster in families. But, I hit

> delete

> at the wrong time and deleted it. Sorry about that -- so whoever

> you

> are -- it's true that IVIG sometimes clusters in families --

> we've seen

> that on this group. But it's also true that CVID also can

> randomly show

> up with no family history and no heriditary markers. What I'm

> hearing

> a lot on this group is that it seems that when CVID shows up, one

> of

> more parent either already has an autoimmune problem or they soon

> get

> one. That could lead to some interesting theories. We do know

> that

> stress often lowers our immunity so could be the " cause " of our

> going

> down with autoimmune attacks -- or it could be a connection that's

> genetic. We won't know until the scientists get it all sorted

> out. I

> do know that the NIH is doing research on cluster family groups

> trying

> to find the gene responsible. I think that someday that type of

> CVID

> will be separated off from the random group, but I'm not sure.

>

> But, yes, I experience that same fear everytime I hear that my non-

> PID

> son is ill. I think we all do.

>

> Hope that helps,

> In His service,

> Dale

>

>

>

>

[Guest guest]

Janet,

Yes, they have mentioned it and loosely diagnosed me with it, however, I have

none of the " trigger points " that you need for an official diagnosis. That came

from a rheumatologist. So, I just don't know! My primary said, " You probably

have it, lets go with that... " I'm telling you, I can't find a good decisive

Dr. Anywhere! I give up.

Thanks for the note. If you would like to email me about the fibro further, I

know this is not the forum, I wouldn't mind some more info.(knmb2@...)

Thanks!

Kim, Mom to 8 (CVID)

Re: Hi from Dale

> In a message dated 9/25/2004 7:22:03 PM Eastern Daylight Time,

> knmb2@... writes:

>

> I have regular joint pain that travels in pairs....thumbs,

> pointer fingers,

> ankles, hips, knees....and EXTREME fatigue. My symptoms flare up

> and flare

> down.... (usually couple good months, couple BAD months) been 5

> years nowII

>

> Sounds like you may have fibromyalgia. It is an auto-immine. I

> have it. Has

> the DR ever mentioned it to you before?

>

> Janet, mom to Brittany, CVID, age 13

>

>

>

>

[Guest guest]

In a message dated 9/25/2004 4:22:05 PM Pacific Standard Time,

knmb2@... writes:

If you are to develop an auto-immune disease, do you test positive right

away? Should I put my nagging thoughts to rest since I had two negative test

results in five years or can they develop at their own pace and show up when

they

feel like it???

Kim,

I am not a nurse, but I have two autoimmune diseases. I can tell you that

you can test negative for quite a few years--depending on the disease.

Testing negative is not the same as lack of illness. With one of my diseases, I

once

tested positive and then my tests were normal the next time. My Rheumy has

told me that this is normal because I'm still fairly young and later on my

tests will be positive--all of the time.

Sandi

[Guest guest]

Sandi,

Thats very interesting...because sometimes I'm made to feel like it must be in

my head...my primary Dr. looks as me funny when I tell him I STILL have all

these symptoms and nothing shows up in a test result. VERY frustrating. I know

there is something wrong...I will keep trying. Thanks a bunch.

Kim

Re: Hi from Dale

> In a message dated 9/25/2004 4:22:05 PM Pacific Standard Time,

> knmb2@... writes:

> If you are to develop an auto-immune disease, do you test positive

> right

> away? Should I put my nagging thoughts to rest since I had two

> negative test

> results in five years or can they develop at their own pace and

> show up when they

> feel like it???

> Kim,

> I am not a nurse, but I have two autoimmune diseases. I can

> tell you that

> you can test negative for quite a few years--depending on the

> disease.

> Testing negative is not the same as lack of illness. With one of

> my diseases, I once

> tested positive and then my tests were normal the next time. My

> Rheumy has

> told me that this is normal because I'm still fairly young and

> later on my

> tests will be positive--all of the time.

> Sandi

>

>

>

[Guest guest]

Dale,

I'm metrically challenged, so I don't know how close to a pound a kg is. Sam is

80 pounds. Is there a mg/lb measurement???

Thanks,

Wenoka

Re: Hi from Dale

from Dale, Mom to Katy, CVID, age 20

Wenoka, Sam seems to be on the low end of the recommended dose (400-800

mg/kg of body weight), so his doctors may want to look into an increase.

But remember that that's just a basic recommendation that has to be

adjusted for individuals. I would certainly let your immunologist know

that he's losing energy by the 3rd week and this break through infection

and ask them if they need to consider a dose increase. Never hurts to

ask!!!!

Based on Sam's weight (80 kg) the above range is 14.5 gram to 29.08

grams per month.

Hope that helps,

In His service,

Dale

Wenoka & wrote:

>He's 80 lbs now, so I'm just wondering if he has gained enough weight to

warrant an increase (he's on 15g) or if this could be due to product. It

doesn't seem to make sense for it to be the product. One would think that one

IgG would be as good as another, unless the way the product is processed could

make a difference in the effectiveness of it.

>

>

>

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]

Just my luck. The immuno nurse is in England to visit her mum this week. I'll

have to check with her in a couple of weeks about brand vs dosage amount. One

more month to see if it is becoming an actual pattern. Today went smoothly as

usual. Just soooo looooong.

Thanks for clarifying. Yep, it was the 80 kg that threw me.

At LEAST you can say " never trust my math when I'm half-dead " .

I have to say " never trust my math " . Especially if the metric system is

involved. 8o)

God bless,

Wenoka

Re: Hi from Dale

from Dale, Mom to Katy, CVID, age 20

That's why I did the math for you! First you convert pounds to kg

(divide 80 lbs by 2.2) and you get 36 kg. Then you multiply that by 400

and get the lowest amount. To convert that to grams you move the

decimal over 3 places to the left. That's your lowest number in the

range. Multiply 36 by 800 and get the highest number in that range.

Sorry I didn't explain where I got the numbers!

AHA! I see where you were confused -- in my haste to get to bed last

night when I typed in the e-mail, I said that Sam was 80 kg -- no wonder

you didn't trust my math!!!! Never trust my math when I'm half-dead!

Sorry for the mix-up.

In His service,

Dale