INTRODUCTION

[Guest guest]

Hi Sharon, Welcome to the group. I was reluctant to up my carbs as I was on

a protein-intense diet for my high BP. I'm losing weight and inches, the BP

is still up but this comes down as excess fat comes off. Enter the

Challenge, what have you got to lose other than bodyfat ;-) Lean.

[Guest guest]

Dear Carol,

Hi! Welcome to the group! You will receive a lot of support here and I,

myself, have received a great deal of useful information. My son also has

CVID. He is currently on monthly IVIG's. He has angioedema as well. When

he was younger, he had a great many other illnesses including kidney and

stomach problems, rashes (which he still has) and has had many, many tests

done. He was on steroids for a number of years. Anyway, I just wanted to

say welcome and always feel free to write and vent your frustrations, fears,

etc. or to ask any questions you may have. Take care.

Lee (Mom to : CVID, angioedema, nephrotic syndrome)

[Guest guest]

kmeyer,

how where you successful in getting kyle off of steroids? wWe have been trying

for many years with no success. It is very frustrating to everyone including the

doctors. We where trying this last month and now are on more than we where on

before we started lowering the steroids in the first place. He gets this cough

that drives me out of my mind because there is no wheezing involved just cough.

This happens everytime we have tried to lower the steroids.

Re: introduction

From: Kmeyer1020@...

Dear Carol,

Hi! Welcome to the group! You will receive a lot of support here and I,

myself, have received a great deal of useful information. My son also has

CVID. He is currently on monthly IVIG's. He has angioedema as well. When

he was younger, he had a great many other illnesses including kidney and

stomach problems, rashes (which he still has) and has had many, many tests

done. He was on steroids for a number of years. Anyway, I just wanted to

say welcome and always feel free to write and vent your frustrations, fears,

etc. or to ask any questions you may have. Take care.

Lee (Mom to : CVID, angioedema, nephrotic syndrome)

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

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

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]

Dear Carol,

It must make a difference for what reason someone is on steroids. In my

son's case he was on them for years because his kidneys would not hold his

body's proteins (nephrotic syndrome). The nephrologists said that he would

be on steroids for the rest of his life. For years he gained weight, did not

grow taller, and was just plain miserable. His self-esteem was non-existent.

I kept calling different doctors believing that there had to be something

out there which would help my son besides steroids. We live in a relatively

small town and believe it or not, I found the doctor right here, in our own

hometown. He put him on another drug that was considered experimental for

the illness my son had. I'll never forget how scared I was signing the

papers giving permission for him to treat my son with this medication. Now

I'm glad I did, because my son has been steroid free for several years now.

Keep the faith and don't be afraid to ask other doctors for their opinions.

Take care.

Lee

[Guest guest]

Dear Carol,

Of course you may ask. Always feel free to ask any questions you may have,

please. Unfortunately, the name escapes me for the moment. has been on

so many meds, as many of the children on this web page have. I will look

back over his medical records and see if I can find it for you though, okay?

What we did with was basically call all over the country. We live in

California and I called as far as New York. In fact, three years ago we flew

to N.Y. to see an immunologist there. Keep trying and don't give up hope.

Take care.

Lee

[Guest guest]

Ursala,

joshua is on seravent, flowvent,flownase,cortef,albuteral,and many other things

for other complications.

RE: introduction

Carol - what respiratory medications is on?

Ursula Holleman uahollem@...

and Macey's mom (4 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

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

http://www.pedpid.com

http://www.onelist.com/community/PedPID

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

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

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]

lee,

thank you for your response. I have ask every doctor we have seen and i get the

same answer. We need to get him off but joshua is a difficult case. I hate when

they say that it's like they read it from the same book. May i ask what the

medicine was?

carol

Re: introduction

From: Kmeyer1020@...

Dear Carol,

It must make a difference for what reason someone is on steroids. In my

son's case he was on them for years because his kidneys would not hold his

body's proteins (nephrotic syndrome). The nephrologists said that he would

be on steroids for the rest of his life. For years he gained weight, did not

grow taller, and was just plain miserable. His self-esteem was non-existent.

I kept calling different doctors believing that there had to be something

out there which would help my son besides steroids. We live in a relatively

small town and believe it or not, I found the doctor right here, in our own

hometown. He put him on another drug that was considered experimental for

the illness my son had. I'll never forget how scared I was signing the

papers giving permission for him to treat my son with this medication. Now

I'm glad I did, because my son has been steroid free for several years now.

Keep the faith and don't be afraid to ask other doctors for their opinions.

Take care.

Lee

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

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

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]

Ursala,

I left out singular.

RE: introduction

Carol - what respiratory medications is on?

Ursula Holleman uahollem@...

and Macey's mom (4 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

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

http://www.pedpid.com

http://www.onelist.com/community/PedPID

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

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

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]

Carol - what respiratory medications is on?

Ursula Holleman uahollem@...

and Macey's mom (4 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

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

http://www.pedpid.com

http://www.onelist.com/community/PedPID

[Guest guest]

lee,

thank you for the response. The doctor we just saw in houston said there was a

good hospital in denver.I thought I was getting somewhere when we went to

houston and got a second opinion. Of course when I got back to corpus I found

out that because I was seeing a lung doctor here for joshua's ivig my insurance

would not pay for me to see one in houston. The doctor in houston thought the

one I see here but they have a few different idea's. Well thank you for looking

for the medication . carol

Re: introduction

From: Kmeyer1020@...

Dear Carol,

Of course you may ask. Always feel free to ask any questions you may have,

please. Unfortunately, the name escapes me for the moment. has been on

so many meds, as many of the children on this web page have. I will look

back over his medical records and see if I can find it for you though, okay?

What we did with was basically call all over the country. We live in

California and I called as far as New York. In fact, three years ago we flew

to N.Y. to see an immunologist there. Keep trying and don't give up hope.

Take care.

Lee

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

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

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]

Dear Carol,

What if the doctor you already saw wrote a letter to your insurance strongly

recommending that you see the other doctor? Would your insurance cover then?

Lee

[Guest guest]

lee,

Unfortunately, I have ssi so it is medicaid and they never want to pay for

anything as it is moreless two doctors.

carol

Re: introduction

From: Kmeyer1020@...

Dear Carol,

What if the doctor you already saw wrote a letter to your insurance strongly

recommending that you see the other doctor? Would your insurance cover then?

Lee

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

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

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]

Carol,

I'll keep thinking. Take care.

Lee

[Guest guest]

National Jewish hospital is in Denver. That would be a wonderful place to

have a respiratory workup done. www.njc.org

is their web site.

Ursula Holleman uahollem@...

and Macey's mom (4 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

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

http://www.pedpid.com

http://www.onelist.com/community/PedPID

Re: introduction

lee,

thank you for the response. The doctor we just saw in houston said there was

a good hospital in denver.I thought I was getting somewhere when we went to

houston and got a second opinion. Of course when I got back to corpus I

found out that because I was seeing a lung doctor here for joshua's ivig my

insurance would not pay for me to see one in houston. The doctor in houston

thought the one I see here but they have a few different idea's. Well thank

you for looking for the medication . carol

[Guest guest]

From Amy (, 8 yrs SCIDX1, Sam & Libby 4 yrs)

I did research at National Jewish for 5 years after my BS - we did a

longitudinal study on children born to asthmatic mothers. The study is still

ongoing and the kids are between 10 & 13 years old now. Let me know if anyone

has any qs re NJC. Amy

[Guest guest]

Belinda Rose,

My son began by having IVIG's in the hospital, then we started having them at

home. One time he had a reaction to it and had to be rushed to the hospital.

We tried to get the infusions done at home again, but first the insurance

wouldn't okay it, then finally they did, but now we cannot find a home health

nurse who will come in and give it to him. I guess they feel it is too

risky. It's too bad because really preferred being infused in the

comfort of his own home.

Lee

[Guest guest]

Hi - It is interesting when women develop asthma after childbirth, it does

happen. In the longitudinal study 2 of our " control " mothers developed asthma

during the study. They are now looking at precursors to the real asthma dx -

like hyperreactivity of bronchial tubes (tested with methacholine challenge),

early RSV infection leading to wheezing in infancy and resulting in late

onset asthma, etc. It really is an interesting field. They are hot on the

genes for asthma and it will be neat when all the pieces to the puzzle fall

together. Our recent article was In Pediatric Pulmonology 1999

Feb:27(2):85-94 - Prediction of early-onset asthma in genetically at-risk

children.

AUTHORS: Mrazek DA; Klinnert M; Mrazek PJ; Brower A; McCormick D; Rubin B;

Ikle D; Kastner W; Larsen G; Harbeck R; J.

[Guest guest]

Amy - what about children born to women who were not asthmatic when they

delivered but developed (or were diagnosed) with asthma 5-10 yrs later (~30

yrs old). When I had my children I was not diagnosed with asthma, my mom

has COPD from asthma and lung infections and Macey has moderate-severe

asthma. But I was not diagnosed until Macey was alittle over 2 yrs old.

Which means I may have had it when I carried her but just wasn't

symptomatic. Is that possible? , our 7 yr old took treatments as a

toddler but has pretty much outgrown it. She needs one now and again and is

always associated with having a stomach virus. Hadn't really ever thought

about the association.

Ursula Holleman uahollem@...

and Macey's mom (4 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

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

http://www.pedpid.com

http://www.onelist.com/community/PedPID

Re: introduction

From: Djambrower@...

From Amy (, 8 yrs SCIDX1, Sam & Libby 4 yrs)

I did research at National Jewish for 5 years after my BS - we did a

longitudinal study on children born to asthmatic mothers. The study is still

ongoing and the kids are between 10 & 13 years old now. Let me know if

anyone

has any qs re NJC. Amy

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

GET A NEXTCARD VISA, in 30 seconds! Get rates

as low as 0.0% Intro APR and no hidden fees.

Apply NOW!

http://click./1/975/5/_/480115/_/952228600/

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

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]

Dear Judy: I am very sorry for the loss of your son, I am from Pittsburgh

Pa. originally and I have an eleven year old daughter with cvid and severe

asthma and ataxia. She was put on IVIG last january and has improvement

somewhat and can now fight infections better, was your son placed on Ivig at

all? I hope you do not mind the questions. I have three doctors in my

family that practice in the Pittsburgh and Mt Lebanon area Larry Freeman,a

nephrologist, Freeman, medical pediatric consultant and

Silver a PA in Gerontology. We went to a family reunion last july and I had

forgotten how beautiful western PA was. I was suppose to go again this year

but will be in Washingtion D.C. instead for my daughters treatment. I look

forward to hearing from you and glad you decided to join our wonderful

group, they are supportive and have opened my small world up to alot of

learning and sharing ,

God BLess

annette mom to alissa age 11

>

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Introduction

>Date: Mon, 06 Mar 2000 18:35:42 -0500

>

> > Hello, My name is Judy I am the coordinator for the Immune Deficiency

>Foundation in Western Pennsylvania and I was the Mom of a wonderful son

>with Common Variable Immunodeficiency. Sadly Tim developed a rare

>pediatric cancer and

> > died 6 days after his auto stem cell transplant at age 17y. he was

>initailly diagnosed with CVID at age 10 and did very, very well until the

>cancer diagnosis.....they could never really decide if this had any

>relationship to the

> > CVID, Tim had Desmoplastic small round cell tumor and this cancer has

>not affected any other immune deficient patient that I am aware of and I

>have been in contact with about ten families worldwide that have dealt with

>this

> > devestating cancer, sadly all but 2 or 3 have died now. I hope you

>will not think I am intruding by joining your group. Our family has a

>strong genetic component, both my husband and his mother are also immune

>deficient,

> > something we didn't discover until several years after my son's

>diagnosis. I continue to have significant concern for my two remaining

>children. I also act as a patient and family contact person in my state

>and I look forward

> > to sharing information with you. We all share a difficult path at

>times, but I have found that the only way I can deal with my situation is

>to constantly learn. Thank you for allowing me to join your group.

> Judy

>

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Ursula: I was recently diagnosed with sports induced asthma after 43 yrs

without it. Both my children had it from birth, my mom did not develop it

until her fourty either. I also had my immune levels run and they are all

fine.

regards,

annette and alissa

>

>Reply-To: PedPIDonelist

>To: <PedPIDonelist>

>Subject: RE: introduction

>Date: Mon, 6 Mar 2000 21:01:29 -0500

>

>Amy - what about children born to women who were not asthmatic when they

>delivered but developed (or were diagnosed) with asthma 5-10 yrs later (~30

>yrs old). When I had my children I was not diagnosed with asthma, my mom

>has COPD from asthma and lung infections and Macey has moderate-severe

>asthma. But I was not diagnosed until Macey was alittle over 2 yrs old.

>Which means I may have had it when I carried her but just wasn't

>symptomatic. Is that possible? , our 7 yr old took treatments as a

>toddler but has pretty much outgrown it. She needs one now and again and

>is

>always associated with having a stomach virus. Hadn't really ever thought

>about the association.

>

>Ursula Holleman uahollem@...

>

> and Macey's mom (4 yr. old with CVID, asthma, sinus disease, GERD,

>kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

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

>

>http://www.pedpid.com

>http://www.onelist.com/community/PedPID

>

>

> Re: introduction

>

>

>From: Djambrower@...

>

>From Amy (, 8 yrs SCIDX1, Sam & Libby 4 yrs)

>I did research at National Jewish for 5 years after my BS - we did a

>longitudinal study on children born to asthmatic mothers. The study is

>still

>ongoing and the kids are between 10 & 13 years old now. Let me know if

>anyone

>has any qs re NJC. Amy

>

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

>GET A NEXTCARD VISA, in 30 seconds! Get rates

>as low as 0.0% Intro APR and no hidden fees.

>Apply NOW!

>http://click./1/975/5/_/480115/_/952228600/

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

>

>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.

>

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

That is very interesting in 1992, I was given the methacolene challenge and

not a trace of asthma flared, until we moved back to phoenix, arizona. I

wonder why,

annette

>From: Djambrower@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: introduction

>Date: Mon, 6 Mar 2000 22:26:44 EST

>

>Hi - It is interesting when women develop asthma after childbirth, it does

>happen. In the longitudinal study 2 of our " control " mothers developed

>asthma

>during the study. They are now looking at precursors to the real asthma dx

>-

>like hyperreactivity of bronchial tubes (tested with methacholine

>challenge),

>early RSV infection leading to wheezing in infancy and resulting in late

>onset asthma, etc. It really is an interesting field. They are hot on the

>genes for asthma and it will be neat when all the pieces to the puzzle fall

>together. Our recent article was In Pediatric Pulmonology 1999

>Feb:27(2):85-94 - Prediction of early-onset asthma in genetically at-risk

>children.

>AUTHORS: Mrazek DA; Klinnert M; Mrazek PJ; Brower A; McCormick D; Rubin B;

>Ikle D; Kastner W; Larsen G; Harbeck R; J.

>

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

bout time

Ursula Holleman uahollem@...

and Macey's mom (4 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

http://www.onelist.com/community/PedPID

PedPID member list

<http://www.bitlocker.com/records?c=21 & db=1987229828252651 & v=198722982825265

3 & records_perpage=70>

introduction

Hi everyone

Sorry I didn't introduce myself earlier I just kinda jumped in.I have

known Ursula through the scid group for quite awhile now.My son is 8

turning 9 on March 24 and is eight years post bone marrow transplant for

x-linked b-cell scid.He had a haplo-identical transplant which was

complicated by B-cell lymphoproliferative disease three months post

bmt.Since that time he has had alot of ups and downs immune function

wise and still recieves igg every two to three months as I see fit.He

attends grade 3 in a public school and is very gifted.I also have a

younger son who I had prenatally tested to ensure he was unaffected by

scid and he is now four.He is a perfect bone marrow match for his

brother so I do have his cord blood cyrofrozen just in case we ever need

it.I have recently gone back to work since my youngest is in school and

run a group home for severely medically fragile handicapped children as

well I volunteer with the canadian immune patient organization.I live in

Edmonton Canada,the frozen north,where it is to cold for viruses to

live.So that's my story in a nutshell,again I am sorry for the delayed

introduction.

My name is but my friends call me Mac,

Mac,mom to Shane(scid)and

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

GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

http://click./1/937/5/_/480115/_/952919935/

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

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]

Jan,

I bet the speaker was Miles - an immunologist in The Woodlands?

He's got a PID himself, and he went to med school in Lubbock, I think...

so he's got all sorts of connections to that PID support group, I'd bet!

He's a really amazing man, and he was very supportive when I contacted

him for advice before starting med school. His patients are very lucky

to have him as their doctor.

I will respond more completely soon... on my way to class, but was

pretty sure I knew the answer to that question, at least!

Take care,

[Guest guest]

Dear Lori ,

Have you tried skandi shakes, I get ours from our doctor, Usually

children with CF drink them. But its taste is not bad. Nothing like pedisure.

My son drinks skandi shakes to help keep his weight stable.

It is working. He said insure and anything like that tastes bad. But he likes

the vanilla skandi shakes.

Something to ask you doctor for. At least try it.

God Bless,

mom to (CVID, Severe Steroid Dependent Asthma, GERDS, +

more..... ) and Cameron

IgG subclass deficiency, and Severe steroid depend asthmatic.

Rodney, and

Re: RE:Introduction

Lori,

Thanks for the info. We did try Carnation, but Cassie has a tough time with

milk products. I have not tried it for a long time, I might look into it

again. We tried the pediasures and she would literally gag as it went down.

Her gag reflex has gotten better with time. She has done really great with

the Lactaid products. I might start with a high calorie product to add to

the milk in her cereals. I think she has put on all her weight with bean

taquitoes (a south TX. favorite) and chicken nuggets. I too wish I had that

problem of putting on weight. (LOL).

Belinda Rose

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

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

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]

My son was on periactin syrup when he was three. I believe it is an

antihistmine with one side effect being increased appetite. He was hungry

about 45 minutes after taking it and it was helpful for increasing his

weight. As always check with your doctor.

Catching up on e-mail,

Lynne