Question

[Guest guest]

Prior to with my third one but doc said NO during so.... did not take them. Second one is my AS, bi polar, ADHD and odd one. graphicmage <graphicmage@...> wrote: Was anyone taking antidepressants prior to or while pregnant?

Get your own web address. Have a HUGE year through Small Business.

[Guest guest]

My son has never got fevers, unless he is so bad that he is hospitalized like

for pneumonia. Also, if he does by chance get a rare fever it dehydrates him

instantly so bad that he must be taken to the ER for fluids. After his IVIG

infusion was the first time he has gotten a fever for apparently no reason we

could see, and then by morning it was gone. He had never gotten over a fever on

his own without it requiring the hospital! We were worried, but then amazed

when he did!

---- & Vernon <scully@...> wrote:

> I have seen it pop up several times recently the lack of fever. Is this

> a normal part of PID?. My three year old who has not been diagnosised

> never has the typical fever. The highest we get with illness is a rectal

> temp of 99.1. Needless to say her normal is below 98. I find it

> interesting that several kiddos here do something similar. I have always

> wondered if it is because her bodys immune system fails to mount the

> normal response. Have any of your immunologists chimed in on this?

> Thanks for your responses, I'm still learning as fast as I can.

>

>

>

> Mom to Mackenzie 3 with ?PID

>

> 6 healthy.

[Guest guest]

It must vary? because Gwynn's fevers go really high

really quickly and are very hard to control. It almost

seems like her body overreacts in that sense...I

always wonder if her body is over compensating for the

lack of response in the rest of her immune system.

--- itsallaboutkreed@... wrote:

> My son has never got fevers, unless he is so bad

> that he is hospitalized like for pneumonia. Also,

> if he does by chance get a rare fever it dehydrates

> him instantly so bad that he must be taken to the ER

> for fluids. After his IVIG infusion was the first

> time he has gotten a fever for apparently no reason

> we could see, and then by morning it was gone. He

> had never gotten over a fever on his own without it

> requiring the hospital! We were worried, but then

> amazed when he did!

> ---- & Vernon <scully@...> wrote:

> > I have seen it pop up several times recently the

> lack of fever. Is this

> > a normal part of PID?. My three year old who has

> not been diagnosised

> > never has the typical fever. The highest we get

> with illness is a rectal

> > temp of 99.1. Needless to say her normal is below

> 98. I find it

> > interesting that several kiddos here do something

> similar. I have always

> > wondered if it is because her bodys immune system

> fails to mount the

> > normal response. Have any of your immunologists

> chimed in on this?

> > Thanks for your responses, I'm still learning as

> fast as I can.

> >

> >

> >

> > Mom to Mackenzie 3 with ?PID

> >

> > 6 healthy.

>

>

>

[Guest guest]

I don't know this with any certainty - but I have always believed that PID

kids don't always get fevers because fevers are an immune response, it's a

sign that your body is fighting something. So, in my own very non medical

mind. if you are not actually mounting a good response you wouldn't get

fevers. In our case, from the beginning, my kids got very high out of

control fevers when they had a virus, and no fever at all, or a very low

grade one for a bacterial infection. I have long suspected that this had to

do with their T-cell vs B cell response. Last year Kate's T cells dropped

quite a bit. and she stopped getting high fevers.

I don't think this is universal for all pid patients (like the rest of this

disease, it seems to effect so many in different ways).however, I do know

doesn't get fevers, and Charlie still only gets them when it's viral.

In fact, it's written on Charlie's IEP - " Fever should not be used as

indication of infection. Listen to Charlie and observe his demeanor for

signs of infection. "

Dayna

Mom to Charlie,6 Kate 4, & Tommy 3, all PID all on IVIG

_____

From: [mailto: ] On Behalf Of

itsallaboutkreed@...

Sent: Monday, March 05, 2007 7:26 PM

Cc: & Vernon

Subject: Re: Question

My son has never got fevers, unless he is so bad that he is hospitalized

like for pneumonia. Also, if he does by chance get a rare fever it

dehydrates him instantly so bad that he must be taken to the ER for fluids.

After his IVIG infusion was the first time he has gotten a fever for

apparently no reason we could see, and then by morning it was gone. He had

never gotten over a fever on his own without it requiring the hospital! We

were worried, but then amazed when he did!

---- & Vernon <scullytriad (DOT) <mailto:scully%40triad.rr.com> rr.com>

wrote:

> I have seen it pop up several times recently the lack of fever. Is this

> a normal part of PID?. My three year old who has not been diagnosised

> never has the typical fever. The highest we get with illness is a rectal

> temp of 99.1. Needless to say her normal is below 98. I find it

> interesting that several kiddos here do something similar. I have always

> wondered if it is because her bodys immune system fails to mount the

> normal response. Have any of your immunologists chimed in on this?

> Thanks for your responses, I'm still learning as fast as I can.

>

>

>

> Mom to Mackenzie 3 with ?PID

>

> 6 healthy.

[Guest guest]

Thanks for the explanation. Very interesting about the T cell vs B cell

responses. It makes sense then that bacterial infections wouldn't illicit a

response such as fever. What is the best thing to do for this? Is that

what IVIG is supposed to be helping?

Mom to , 7 unaffected

, 4 GSD, hypogam, pneumococcal AD

Meredith, 2 GSD, ?PI

Huntsville, AL

Re: Question

My son has never got fevers, unless he is so bad that he is hospitalized

like for pneumonia. Also, if he does by chance get a rare fever it

dehydrates him instantly so bad that he must be taken to the ER for fluids.

After his IVIG infusion was the first time he has gotten a fever for

apparently no reason we could see, and then by morning it was gone. He had

never gotten over a fever on his own without it requiring the hospital! We

were worried, but then amazed when he did!

---- & Vernon <scullytriad (DOT) <mailto:scully%40triad.rr.com> rr.com>

wrote:

> I have seen it pop up several times recently the lack of fever. Is this

> a normal part of PID?. My three year old who has not been diagnosised

> never has the typical fever. The highest we get with illness is a rectal

> temp of 99.1. Needless to say her normal is below 98. I find it

> interesting that several kiddos here do something similar. I have always

> wondered if it is because her bodys immune system fails to mount the

> normal response. Have any of your immunologists chimed in on this?

> Thanks for your responses, I'm still learning as fast as I can.

>

>

>

> Mom to Mackenzie 3 with ?PID

>

> 6 healthy.

[Guest guest]

Thank you. Dawn

Dawn Souza

question

Hello my name is Dawn and I am from the New England area. I am cvid and have

two children cvid as well. I am on ivig now 6 months and my 5 yr. old also

for almost three years. My ten yr. is on anti. profax.. My recent cat scan

showed polyps. I have had alot of sinus infections recently. Many years ago

I have sinus surgery. My white count is also low at 3.3. Any ideas? Will I

need surgery again? Does the infections affect your white count? Thank you

Dawn

Dawn Souza

____________ _________ _________ _________ _________ _________ _

Have a burning question?

Go to www.Answers. and get answers from real people who know.

[Guest guest]

That question along with many others about HCV is still ongoing research and only estimates can be given which changes with new research info. There are still to many HCV unknowns. At first it was thought the virus died after a short time than it went to a few hours now at room temperature "suggests" from 16 hours up to 4 days or more. It varies as to the amount of contaminated blood or blood products temperature environment substances it was exposed to viral load if dried what it became soluble in ......... With research and ever changing and new knowledge

about HCV you can probably find research now suggesting even longer at less potency. I'm not about to chance it at any length of time. It is an ingeniously shrewd virus. Deb

[Guest guest]

I don't know if anyone else has answered this yet, but I am jumping in with my 2 cents. #1... If someone else used your razor (that had the before mentioned blood on it) the other person would have to have a cut or open spot bleeding in order to come in contact with your blood. #2....I don't know what current standards say but I was taught that hep can live as long as 2 weeks on a non pourus surface. Like formica. Bleach is the standard disinfectant. I forget the exact formula but i think it was like 10 cups water per 1 cup bleach..... others will correct me if I am wrong. hugs djimmymusso <jimmymusso@...> wrote: OK LETS SEE....LETS SAY I HAD SOME BLOOD ON MY RAZOR HOW LONG WOULD IT TAKE FOR THE HEP C VIRUS TO DIE??? U KNOW HOW WHEN BLOOD THAT HAS HIV IN IT AND ONCE THE AIR HITS IT IT IS DEAD WELL DOES ANYONE KNOW HOW LONG IT TAKES???I HOPE THAT MADE SENSE...........

Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit.

[Guest guest]

Hey traveler,

Who has the Hep C. I had a Hepatitis C patient on a ventilator one time, and when the family decided to do no more, they took him down for surgery and harvested several organs including his liver. They all went to Hepatitis C infected persons who were about to die without a transplant.

Im a Respiratory Therapist and I've turned off ventilator's on so many people( They don't really pull the plug) it seems such a shame and a waste of organs.

In this case I know the physician knew his wishes so make your wishes known, put it in writing, tell you Dr.

Sometimes signing you drivers license isn't enough. You may not have your ID on you, Uncle I don't know may show up and insist you did not want to be an organ donor.

question

I know I'm a lurker and don't post often but I have a question and I couldn't find the answer in any of the links or files.How do I become a donor? My wife is getting worse and I need to know what the protocol is to get everyone registered.Thanks,The Traveler

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.446 / Virus Database: 268.18.18/734 - Release Date: 3/26/2007 2:31 PM

[Guest guest]

Thanks for the advice .

T.

>

> Hey traveler,

> Who has the Hep C. I had a Hepatitis C patient on a ventilator one

time, and when the family decided to do no more, they took him down

for surgery and harvested several organs including his liver. They

all went to Hepatitis C infected persons who were about to die

without a transplant.

>

> Im a Respiratory Therapist and I've turned off ventilator's on so

many people( They don't really pull the plug) it seems such a shame

and a waste of organs.

> In this case I know the physician knew his wishes so make your

wishes known, put it in writing, tell you Dr.

>

> Sometimes signing you drivers license isn't enough. You may not

have your ID on you, Uncle I don't know may show up and insist you

did not want to be an organ donor.

>

>

>

>

> question

>

>

> I know I'm a lurker and don't post often but I have a question

and I

> couldn't find the answer in any of the links or files.

> How do I become a donor? My wife is getting worse and I need to

know

> what the protocol is to get everyone registered.

> Thanks,

> The Traveler

>

>

>

>

>

>

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

----------

>

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.446 / Virus Database: 268.18.18/734 - Release Date:

3/26/2007 2:31 PM

>

[Guest guest]

WE have always been very open with . He was 7 when diagnosed AS and he's now 9.

Today he watched The View which was a repeat but all about Autism. He doesn't seem to mind that he has AS and he knows quite a bit about it because we are always talking about it. He is very high functioning and wants to know all about it. He also asks a lot of questions about it, especially when a show about it comes on TV. We try to answer the best we can and if we don't know the answer we write down the question and bring it with us to our regular psychologist appointments.

At school last year, he wrote in his journal "I am glad I have aspergers, it makes me different from everyone else and I wouldn't want to be like anyone else but me" I think he likes the fact that there is a reason he is different and that it's not a bad thing being different. I hope he always has that outlook about aspergers. I know it will get tougher the older he gets!

Estevan, Saskatchewan

Canada

-- Question

Hi allThere sure has been alot of media on TV lately about Autism. YOu cant watch a show or a newsbroadcast without hearing wordslike "delayed" "epedemic" or "disorder"My questions is this, What do you say to your kids when they are in the room when these broadcasts come on? My son gets very quiet. I told him when he was about 7 that he had something called Aspergers. There was a point when he started asking alot of questions about all the Docters we saw and I knew that I couldnt hide his disability from him forever. Josh is 9 now and I am having trouble in finding the words to further explain Aspergers to him without making him feel like he has a big wart on his nose that will never go away. I welcome and am grateful for any adviceIngrid

[Guest guest]

i think when they are old enough to understand, i think it would be good to let them know. then they might understand why they are different. the only way i could explain to my oldest daughter about her sister is that her sister is sick in her head, and that causes her sister to act the way she does. it seems to help, but only explained it to her a couple of days ago. and she is almost 7.

cheryl

Question

Hi allThere sure has been alot of media on TV lately about Autism. YOu cant watch a show or a newsbroadcast without hearing wordslike "delayed" "epedemic" or "disorder"My questions is this, What do you say to your kids when they are in the room when these broadcasts come on? My son gets very quiet. I told him when he was about 7 that he had something called Aspergers. There was a point when he started asking alot of questions about all the Docters we saw and I knew that I couldnt hide his disability from him forever. Josh is 9 now and I am having trouble in finding the words to further explain Aspergers to him without making him feel like he has a big wart on his nose that will never go away. I welcome and am grateful for any adviceIngrid

[Guest guest]

Dear Ingrid,

He can be healed, so you wouldn't have to hide anything forever.

I'd just talk about whatever aspects he may struggle or suffer with and explain that they can be healed. Maybe you could put it in terms of practice. Like most people aren't able to beautifully play the piano without practice; so for those who are not natural pianists, there are lessons and practice ... and more practice! And then: accomplishment! Same thing with sports or mathematics, etc.: a few naturals and the rest of us seem to have to learn and practice.

So there are people to whom social skills or comprehension come easy, and there are those who have to learn and practice. Pretty simple concept. Just takes patience to execute.

I hope that's helpful. It's a new idea to me right now too!

Francine

In a message dated 4/6/2007 11:00:00 P.M. Eastern Daylight Time, iamiller98366@... writes:

Hi allThere sure has been alot of media on TV lately about Autism. YOu cant watch a show or a newsbroadcast without hearing wordslike "delayed" "epedemic" or "disorder"My questions is this, What do you say to your kids when they are in the room when these broadcasts come on? My son gets very quiet. I told him when he was about 7 that he had something called Aspergers. There was a point when he started asking alot of questions about all the Docters we saw and I knew that I couldnt hide his disability from him forever. Josh is 9 now and I am having trouble in finding the words to further explain Aspergers to him without making him feel like he has a big wart on his nose that will never go away. I welcome and am grateful for any adviceIngrid

See what's free at AOL.com.

[Guest guest]

Dear Ingrid,

He can be healed, so you wouldn't have to hide anything forever.

I'd just talk about whatever aspects he may struggle or suffer with and explain that they can be healed. Maybe you could put it in terms of practice. Like most people aren't able to beautifully play the piano without practice; so for those who are not natural pianists, there are lessons and practice ... and more practice! And then: accomplishment! Same thing with sports or mathematics, etc.: a few naturals and the rest of us seem to have to learn and practice.

So there are people to whom social skills or comprehension come easy, and there are those who have to learn and practice. Pretty simple concept. Just takes patience to execute.

I hope that's helpful. It's a new idea to me right now too!

Francine

In a message dated 4/6/2007 11:00:00 P.M. Eastern Daylight Time, iamiller98366@... writes:

Hi allThere sure has been alot of media on TV lately about Autism. YOu cant watch a show or a newsbroadcast without hearing wordslike "delayed" "epedemic" or "disorder"My questions is this, What do you say to your kids when they are in the room when these broadcasts come on? My son gets very quiet. I told him when he was about 7 that he had something called Aspergers. There was a point when he started asking alot of questions about all the Docters we saw and I knew that I couldnt hide his disability from him forever. Josh is 9 now and I am having trouble in finding the words to further explain Aspergers to him without making him feel like he has a big wart on his nose that will never go away. I welcome and am grateful for any adviceIngrid

See what's free at AOL.com.

[Guest guest]

Hi Ingrid!

Try this website. http://www.asperger.net/bookstore.htm

There are some books on this site specifically for children to help them

understand. I bought some from this group at a workshop that helped my eight

year old to understand a lot! They are very good. All written by Myles I

think. I hope this helps. There are also the coulter videos. I don’t have

that address right off hand, but I’m sure you could find it by googling.

Take care!

Beth in Alabama

From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of ingrid

Sent: Friday, April 06, 2007 12:00

PM

Autism and Aspergers Treatment

Subject:

Question

Hi all

There sure has been alot of media on TV lately about Autism. YOu cant

watch a show or a newsbroadcast without hearing words

like " delayed " " epedemic " or " disorder "

My questions is this, What do you say to your kids when they are in the

room when these broadcasts come on? My son gets very quiet. I told him

when he was about 7 that he had something called Aspergers. There was a

point when he started asking alot of questions about all the Docters we

saw and I knew that I couldnt hide his disability from him forever.

Josh is 9 now and I am having trouble in finding the words to further

explain Aspergers to him without making him feel like he has a big wart

on his nose that will never go away. I welcome and am grateful for any

advice

Ingrid

[Guest guest]

I think you accidentally sent this email to me by mistake. I have a child with autism, but mine is a girl and she is only 2 1/2, so I thought I would let you know. Thanks, Beth Layne <blayne@...> wrote: Hi Ingrid! Try this website. http://www.asperger.net/bookstore.htm There are some books on this site specifically for children to help them understand. I bought some from this group at a workshop that helped my eight year old to understand a lot! They are very good. All written by Myles I think. I hope this helps. There are also the coulter videos. I don’t have that address right off hand, but I’m sure you could find it by googling. Take care! Beth in Alabama From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of

ingridSent: Friday, April 06, 2007 12:00 PMAutism and Aspergers Treatment Subject: Question Hi allThere sure has been alot of media on TV lately about Autism. YOu cant watch a show or a newsbroadcast without hearing wordslike "delayed" "epedemic" or "disorder"My questions is this, What do you say to your kids when they are in the room when these broadcasts come on? My son gets very quiet. I told him when he was about 7 that he had something called Aspergers. There

was a point when he started asking alot of questions about all the Docters we saw and I knew that I couldnt hide his disability from him forever. Josh is 9 now and I am having trouble in finding the words to further explain Aspergers to him without making him feel like he has a big wart on his nose that will never go away. I welcome and am grateful for any adviceIngrid

We won't tell. Get more on shows you hate to love(and love to hate): TV's Guilty Pleasures list.

[Guest guest]

I always tell my son, 28, that there is nothing "wrong" with peoplewith autism... just that they have unique and special ways. We oftenmake jokes about it, too. We also name off others we know that areon the spectrum and, once, when I kept asking "who else?", "who else?"he came out with "Mommy" !!! LOL ...so, now I am always on that list! You might find some caring and sensitive responses here: <http://stevens_mom.tripod.com/id44.html>I like some of what is on this page, and there is a lot of otherinformation that might be of interest as well. Blessings, Lee

>> Hi all> > There sure has been alot of media on TV lately about Autism. YOu cant > watch a show or a newsbroadcast without hearing words> like "delayed" "epedemic" or "disorder"> > My questions is this, What do you say to your kids when they are in the > room when these broadcasts come on? My son gets very quiet. I told him > when he was about 7 that he had something called Aspergers. There was a > point when he started asking alot of questions about all the Docters we > saw and I knew that I couldnt hide his disability from him forever. > > Josh is 9 now and I am having trouble in finding the words to further > explain Aspergers to him without making him feel like he has a big wart > on his nose that will never go away. I welcome and am grateful for any > advice> > Ingrid>

[Guest guest]

Sorry! I was trying to answer Ingrid’s

question!

Beth

From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of kelly dawson

Sent: Saturday, April 07, 2007

9:59 AM

Autism and Aspergers Treatment

Subject: RE:

Question

I think you accidentally sent this email to me by mistake. I have

a child with autism, but mine is a girl and she is only 2 1/2, so I thought I

would let you know.

Thanks,

Beth Layne <blayneknology (DOT) net> wrote:

Hi Ingrid!

Try this website. http://www.asperger.net/bookstore.htm

There are some books on this site specifically for children to help them

understand. I bought some from this group at a workshop that helped my eight

year old to understand a lot! They are very good. All written by Myles I

think. I hope this helps. There are also the coulter videos. I don’t have

that address right off hand, but I’m sure you could find it by googling.

Take care!

Beth in Alabama

From: Autism and Aspergers Treatment

[mailto:Autism and Aspergers Treatment ]

On Behalf Of ingrid

Sent: Friday, April 06, 2007 12:00

PM

Autism and Aspergers Treatment

Subject:

Question

Hi all

There sure has been alot of media on TV lately about Autism. YOu cant

watch a show or a newsbroadcast without hearing words

like " delayed " " epedemic " or " disorder "

My questions is this, What do you say to your kids when they are in the

room when these broadcasts come on? My son gets very quiet. I told him

when he was about 7 that he had something called Aspergers. There was a

point when he started asking alot of questions about all the Docters we

saw and I knew that I couldnt hide his disability from him forever.

Josh is 9 now and I am having trouble in finding the words to further

explain Aspergers to him without making him feel like he has a big wart

on his nose that will never go away. I welcome and am grateful for any

advice

Ingrid

We won't tell. Get more on shows

you hate to love

(and love to hate):

TV's Guilty Pleasures list.

[Guest guest]

,

I think it did post to the whole group

according to my sent box….

Thanks!

Beth

From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of Beth Layne

Sent: Sunday, April 08, 2007 7:52

AM

Autism and Aspergers Treatment

Subject: RE:

Question

Sorry! I was trying to answer Ingrid’s question!

Beth

From: Autism and Aspergers Treatment

[mailto:Autism and Aspergers Treatment ]

On Behalf Of kelly dawson

Sent: Saturday, April 07, 2007

9:59 AM

Autism and Aspergers Treatment

Subject: RE:

Question

I think you

accidentally sent this email to me by mistake. I have a child with

autism, but mine is a girl and she is only 2 1/2, so I thought I would let you

know.

Thanks,

Beth Layne <blayneknology (DOT) net>

wrote:

Hi Ingrid!

Try this website. http://www.asperger.net/bookstore.htm

There are some books on this site specifically for children to help them

understand. I bought some from this group at a workshop that helped my eight

year old to understand a lot! They are very good. All written by Myles I

think. I hope this helps. There are also the coulter videos. I don’t have

that address right off hand, but I’m sure you could find it by googling.

Take care!

Beth in Alabama

From: Autism and Aspergers Treatment

[mailto:Autism and Aspergers Treatment ]

On Behalf Of ingrid

Sent: Friday, April 06, 2007 12:00

PM

Autism and Aspergers Treatment

Subject:

Question

Hi all

There sure has been alot of media on TV lately about Autism. YOu cant

watch a show or a newsbroadcast without hearing words

like " delayed " " epedemic " or " disorder "

My questions is this, What do you say to your kids when they are in the

room when these broadcasts come on? My son gets very quiet. I told him

when he was about 7 that he had something called Aspergers. There was a

point when he started asking alot of questions about all the Docters we

saw and I knew that I couldnt hide his disability from him forever.

Josh is 9 now and I am having trouble in finding the words to further

explain Aspergers to him without making him feel like he has a big wart

on his nose that will never go away. I welcome and am grateful for any

advice

Ingrid

We won't tell. Get

more on shows

you hate to love

(and love to hate):

TV's Guilty Pleasures list.

[Guest guest]

I would suggest you have him read or read to him the book Freaks,

Geeks and Aspergers Syndrome. It is written by a boy with aspergers

primarily to other kids (especially in the pre-teen age) about the

condition. He has a very positive attitude where he talks about what

is hard, how he has learned to overcome it and embracing the good

qualities he has because of it. He actually says he likes who he

is. He does not treat it as something shameful but as something to

overcome - a challenge. I greatly enjoyed reading it because it

really helps one understand their world.

>

> Hi all

>

> There sure has been alot of media on TV lately about Autism. YOu

cant

> watch a show or a newsbroadcast without hearing words

> like " delayed " " epedemic " or " disorder "

>

> My questions is this, What do you say to your kids when they are in

the

> room when these broadcasts come on? My son gets very quiet. I told

him

> when he was about 7 that he had something called Aspergers. There

was a

> point when he started asking alot of questions about all the

Docters we

> saw and I knew that I couldnt hide his disability from him forever.

>

> Josh is 9 now and I am having trouble in finding the words to

further

> explain Aspergers to him without making him feel like he has a big

wart

> on his nose that will never go away. I welcome and am grateful for

any

> advice

>

> Ingrid

>

[Guest guest]

My son was in 4th grade when he was DX with Aspergers. He didn't want to know about it in the begining but I keep stressing that God made him this way for a purpose and now its our job to help others learn about Aspergers. We also talked about some of his strengths(academic stuff is amazing easy for him) how he may not have those strengths without the Aspergers.His brother is Dyslexic and proud of it. They know everyone is different and its okay. What if everyone thought the same way? Things would never change, and what a boring world that would be.A year or so ago I was helping another mom in my area accept her sons Dx and asked my son if he thought we were right to tell him about his aspergers...his response was "well yeah or else I would have thought something was really wrong with me. I knew I was different from the other kids but didn't know why. And if the teachers and you(mom) didn't know how could people help

me?" I knew he fully accepted it and was really excited on the inside but calm on the outside.There is a book "of mice and aliens" Its about a young boy just dx with aspergers when a space ship crashes and he tries to help the alien learn about our customs and culture while learning himself. This is a book for grade school kids.Good luck!

[Guest guest]

How often should we get the labs? What do we want

> to have happen? We are doing the infusions at home now so should I

> talk to the nurse or call the doctor's office that is ordering the

> IVIG?

from dale, Mom to Katy, CVID, age 22 married

Janet, most doctors want to check about a month or two into IVIG to see

what the trough level is. Trough level means the level of IgG at the

lowest point of the month. So, it's usually drawn just prior to

receiving the IVIG either the day of or the day before. That will show

them if his dose is sufficiently raising his IgG level. Some doctors

check it monthly for a while -- but others just check it about every 6

months. Katy's doctor wanted it checked every 6 months. But, we could

tell when she was outgrowing her dose and needed more because of the

clinical picture -- she started getting sick between doses.

>

> Any advice .... Why do I feel that the IVIG is some sort of torture I should

> feel bad about instead of something that will help him?

I think you've hit on the best advice I can give you -- when you get

your head thinking straight about this -- he'll accept it. Our kids

take our cues from us.

I was so upset about Katy getting IV's once a month until I talked with

a mother whose daughter had diabetes and was having to give her shots 4

times a day, plus all the finger sticks. Yuck. It put it in

perspective for me. Also, we had been on IVIG for about 6 months when

we ran into a national shortage -- all of a sudden I realized (and Katy

realized - she was 13-14 at the time) how much we wanted the IVIG. It

no longer was our enemy -- it was our friend. I think as you begin to

realize that the IVIG is working and your son is not as seriously ill as

he used to be. As you begin to see him be able to handle germs and have

more energy, you'll begin to appreciate having it.

I think all of us mothers felt overwhelmed at the thought of IV's in the

beginning -- especially if our kids were basically healthy. I know

there are some moms on this group that have been doing IV's since birth.

I didn't. Katy was very, very healthy until age 11. So it was a

shock to me to have her sick and need an IV once a month. But, you

adjust and learn a new normal. One advantage of your son being so young

is that he will adjust. The more you can convince yourself that this is

a good thing and not that big of a deal -- the better off your son will

be. Again, going to the St. Louis convention would be a great place to

meet lots and lots of other people who do this on a regular basis and

while it's not " fun " , it's not the most terrible thing on earth, either!

At some point, you may want to change over to SCIG or subcutaneous IgG

replacement. That requires more needles sticks, but not vein access so

it's a lot easier for the kids to handle. It's something to consider in

the future. My daughter did her own sub-q while in college so that she

wouldn't have to have IV's. It made her feel less " sicky " . That

might be a good option for you in the future.

In His service,

dale

[Guest guest]

--- Our ID dr draws all the labs he wants pre infusion, once the stick

is in--I like this, bc I have all the drs decide, before hand, what

labs they need, and then we dont need an additional stick, just the

one for the IV and they draw from that.

We have Ig levels drawn each month, right before infusion.

Savannah has high anxiety, and had gotten to the point that she was

" blanking out " before the infusion, staring and not responding,

passing out, or puking. Even with me right there, holding her, her

favorite blanket and stuffed toy, and the worlds sweetest nurses, it

wasnt enough. We got a devel ped to help us, and she did, and still

does come down each time before infusion to help teach Savannah and I

better ways to cope, BUT in the meantime, she takes an Ativan prior to

infusion. she started out with a whole tablet, but that was too much

for her and she was WAAY too loopy!! we found 3/4 tab to be just

right, and we have slowly gone down to 1/2 tab before infusion, and at

some point, she will just not take it, adn rely on the other coping

strategies she is learning. But for now, this works. This is the ONLY

time she takes any med like that, or anything for the anxiety.

valarie

In , " jdbcj2000 " <janet_richards@...> wrote:

>

> Hi-

> I have a question to everyone about labs. was diagnosed with

> CVID with the low IgG and no response to the pneumococal vaccine.

> Since we started IVIG (5th round is this friday) we haven't done any

> more bloodwork. Somewhere I think I read about pre-and-post IVIG

> labs getting done. I want to learn more! Is that done? What

> should it show? How often should we get the labs? What do we want

> to have happen? We are doing the infusions at home now so should I

> talk to the nurse or call the doctor's office that is ordering the

> IVIG?

>

> Any advice for the anxiety and fits right before the infusion? He

> tightens his arm so close to his body that you can't even straighten

> it to get an IV in. The benedryl doesn't do enough..... With the

> next round this friday I'm starting to worry too. It's the mom

> guilt. Why do I feel that the IVIG is some sort of torture I should

> feel bad about instead of something that will help him? I'm still

> new to this and figuring out how to cope.

>

> Thanks-Janet

>

[Guest guest]

your viral load was only 5000@ start? now its 341? Goolsby <anthonyegoolsby@...> wrote: HI I know I haven't been much of a support partner but for some reason reading the mails started getting me down the fact that I didnt clear at the time my Doc thought I should was a bit of a blowbut i went down from 5000+ to 341 lets see what the next weeks bring but what I need to know is what do you folks think the best pain reliever isfor folks trying to protect their

liver Thanks Sucker-punch spam with award-winning protection.Try the free Beta. Tim Parsons knoxville,tn 37931 865-588-2465 x107 work www.knoxville1.com

Park yourself in front of a world of choices in alternative vehicles.Visit the Auto Green Center.

[Guest guest]

5.000kiu/ml down to 341I live in Germany so maybe the terminology is differentHillbilly Tim <knoxweb1@...> wrote: your viral load was only 5000@ start? now its 341? Goolsby <anthonyegoolsby > wrote: HI I know I haven't been much of a support partner but for some reason reading the mails started getting me down the fact that I didnt clear at the time my Doc thought I should was a bit of a blowbut i went down from 5000+ to 341 lets see what the next weeks bring but what I need to know is what do you folks think the best pain reliever isfor folks trying to protect their liver Thanks Sucker-punch spam with award-winning protection.Try the free Beta. Tim Parsons knoxville,tn 37931 865-588-2465 x107 work www.knoxville1.com Park yourself in front of a world of choices in alternative vehicles.Visit the Auto Green Center.

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