Re: is going back to CHOP - Prayers Please!

[Guest guest]

In a message dated 3/15/2005 12:16:58 P.M. Eastern Standard Time,

asp7800@... writes:

we will be

staying in the RMH ( Mc House) for a minimum of 2

nights, and hopefully get some much needed answers and resolution to

2 LONG YEARS of illness! I will update when I can. Please keep my

sweet 2 year old (who can now sing his entire ABC's - YEA! ) in your

prayers.

Amy, I am so happy that you will finally get some answers and I'm sure some

solutions. Although PID's can't be cured they can be treated. and your

family will be in my prayers. can sing his ABC's!! How sweet and how

smart. =) Give him a hug for me.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Good luck, we will be thinking about you and !

Amy,

mom to , 2 years old, CVID, asthma, GERD, on prophalatic abx

(rotating Septra and Amoxicillin) and IVIG (Carimune NF) every 4 weeks,

flovent, xopenex, albuterol and claritin. Allergic to milk, soy and latex..

among other things. Visit Nick's Caringbridge site at

http://www3.caringbridge.org/ne/nicholasb/

is going back to CHOP - Prayers Please!

[Guest guest]

Good Luck Amy!!

I hope CHOP will finally give you the answers you need and finally give you a

protocal to follow. You'll have to keep me informed on how it goes, and if you

liked the way they did things. I am considering taking my son Zachary to the

Diagnostic Center at CHOP to have him completely gone over and I know that

immunology will be one that we will consult with. Do you mind telling me how

actually you got the appt? Did you call yourself or did you have a dr refer you?

The immunologist we are working with here in FL keeps saying that he is going to

send us up there, but seems to be dragging his feet on actually committing

himself to doing it. Its driving me insane on waiting. Each time I think we are

finally going to do it, he comes up with another test he wants to do here.

We will be keeping you guys in our prayers for a good and safe trip!! And way to

go on the ABC's!!.~MG & Zach(5-7-99)monthly IVIG,IgG total deficiency,IgG1 & 4

deficiency,IgAdeficiency,Antibiody Dysfunction,Asthma,GERD,Chronic

Sinus,Diarrhea and skin infections,FTT,Speech and Fine Motor Delays,central

apnea,hypoapnea,bowel and urine incontinence, and way too much more.....

is going back to CHOP - Prayers Please!

Hi Everyone,

Well the time has finally come! With officially 2 now,

we are leaving in the morning for CHOP (Children's Hospital of

Philadelphia) to finally meet with the head of the new PID (Primary

Immune Deficiency) Clinic - Dr. Jordan Orange. I emailed him last

summer about 's condition (I met a collegue of his on the train

who told me about him) and he had been looking to meet with us then,

but because had been through so much already I decided to wait

until after his 2nd birthday to be seen. Now we should be able to

get an accurate " picture " of his immune system, a more accurate dx,

and a treatment plan that will hopefully give us a better quality of

life without constant illness - (Yes - the sinus infection/URI that

started shortly after Christmas is still with us - UGH!)

Anyway, when dealing with a " PID kid " the experts have told me that

a true evaluation of their immune system cannot be done until at

least 2. So far the only " real " dx we have had is Selective Iga

def, and then possibly THI, but because he was dx so young, neither

of these are really an accurate picture of his immune system. His

docs are saying that with the increased infection rate, no response

to titers, low Iga and IGG we are probably looking at CVID - I hope

not, but at least there is a treatment plan for that.

CHOP has been the only hospital to give us HOPE! We will also be

meeting with the ENT surgeon about 's pending surgery - I am

hoping can be scheduled to have this surgery there at CHOP

instead of here in VA. I guess we will see. Anyway, we will be

staying in the RMH ( Mc House) for a minimum of 2

nights, and hopefully get some much needed answers and resolution to

2 LONG YEARS of illness! I will update when I can. Please keep my

sweet 2 year old (who can now sing his entire ABC's - YEA! ) in your

prayers. Sorry this post is so long...God Bless you all!

OOOOO HUGS from OOOOO

__________________

" Mom2lil "

aka Amy

Mommy to (2 years old, Primary Immune Deficiency

Disease (PID), GERD)

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 Amy,

Our prayers are with you and your family. I hope all goes well and you finally

get some definitive answers. It is a long road we lead, but anything for our

pumpkins.

mom to - CVID, astham, GERD ( Horse Whisperer, Pokemon fanatic and

all around great kid)

is going back to CHOP - Prayers Please!

Hi Everyone,

Well the time has finally come! With officially 2 now,

we are leaving in the morning for CHOP (Children's Hospital of

Philadelphia) to finally meet with the head of the new PID (Primary

Immune Deficiency) Clinic - Dr. Jordan Orange. I emailed him last

summer about 's condition (I met a collegue of his on the train

who told me about him) and he had been looking to meet with us then,

but because had been through so much already I decided to wait

until after his 2nd birthday to be seen. Now we should be able to

get an accurate " picture " of his immune system, a more accurate dx,

and a treatment plan that will hopefully give us a better quality of

life without constant illness - (Yes - the sinus infection/URI that

started shortly after Christmas is still with us - UGH!)

Anyway, when dealing with a " PID kid " the experts have told me that

a true evaluation of their immune system cannot be done until at

least 2. So far the only " real " dx we have had is Selective Iga

def, and then possibly THI, but because he was dx so young, neither

of these are really an accurate picture of his immune system. His

docs are saying that with the increased infection rate, no response

to titers, low Iga and IGG we are probably looking at CVID - I hope

not, but at least there is a treatment plan for that.

CHOP has been the only hospital to give us HOPE! We will also be

meeting with the ENT surgeon about 's pending surgery - I am

hoping can be scheduled to have this surgery there at CHOP

instead of here in VA. I guess we will see. Anyway, we will be

staying in the RMH ( Mc House) for a minimum of 2

nights, and hopefully get some much needed answers and resolution to

2 LONG YEARS of illness! I will update when I can. Please keep my

sweet 2 year old (who can now sing his entire ABC's - YEA! ) in your

prayers. Sorry this post is so long...God Bless you all!

OOOOO HUGS from OOOOO

__________________

" Mom2lil "

aka Amy

Mommy to (2 years old, Primary Immune Deficiency

Disease (PID), GERD)

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

-unsubscribe@groups<mailto:-unsubscribe@groups>.

To search group archives go to:

/messages<PedP\

ID/messages>

[Guest guest]

Hi Amy,

Our prayers are with you and your family. I hope all goes well and you finally

get some definitive answers. It is a long road we lead, but anything for our

pumpkins.

mom to - CVID, astham, GERD ( Horse Whisperer, Pokemon fanatic and

all around great kid)

is going back to CHOP - Prayers Please!

Hi Everyone,

Well the time has finally come! With officially 2 now,

we are leaving in the morning for CHOP (Children's Hospital of

Philadelphia) to finally meet with the head of the new PID (Primary

Immune Deficiency) Clinic - Dr. Jordan Orange. I emailed him last

summer about 's condition (I met a collegue of his on the train

who told me about him) and he had been looking to meet with us then,

but because had been through so much already I decided to wait

until after his 2nd birthday to be seen. Now we should be able to

get an accurate " picture " of his immune system, a more accurate dx,

and a treatment plan that will hopefully give us a better quality of

life without constant illness - (Yes - the sinus infection/URI that

started shortly after Christmas is still with us - UGH!)

Anyway, when dealing with a " PID kid " the experts have told me that

a true evaluation of their immune system cannot be done until at

least 2. So far the only " real " dx we have had is Selective Iga

def, and then possibly THI, but because he was dx so young, neither

of these are really an accurate picture of his immune system. His

docs are saying that with the increased infection rate, no response

to titers, low Iga and IGG we are probably looking at CVID - I hope

not, but at least there is a treatment plan for that.

CHOP has been the only hospital to give us HOPE! We will also be

meeting with the ENT surgeon about 's pending surgery - I am

hoping can be scheduled to have this surgery there at CHOP

instead of here in VA. I guess we will see. Anyway, we will be

staying in the RMH ( Mc House) for a minimum of 2

nights, and hopefully get some much needed answers and resolution to

2 LONG YEARS of illness! I will update when I can. Please keep my

sweet 2 year old (who can now sing his entire ABC's - YEA! ) in your

prayers. Sorry this post is so long...God Bless you all!

OOOOO HUGS from OOOOO

__________________

" Mom2lil "

aka Amy

Mommy to (2 years old, Primary Immune Deficiency

Disease (PID), GERD)

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

-unsubscribe@groups<mailto:-unsubscribe@groups>.

To search group archives go to:

/messages<PedP\

ID/messages>

[Guest guest]

Yet. All PID's can't be cured *yet*. And while we're waiting for those cures

to be discovered, thank God for the treatments! If my son had been born just 30

years ago, he probably would not have survived past 1 1/2 years, if that.

I just want to encourage all of you to hang in there. Research is going forward

looking for cures. They already know that BMT can cure some PID's, especially

when performed when the child is very young. The younger, the better rate of

success.

Last year, when Sam's blood was used as a prototype for a new method of

diagnosing (that takes a couple of days instead of the 2 - 3 months we had to

wait), the doctor talked to me about some of the *cures*, yes *cures*, that are

being researched for some of the PIDs. They've had successful cures of humans

using spliced genes. A good gene is spliced on to a " carrier " gene (usually a

particular form of virus known for rapid DNA replication) and injected into the

patient. The doctor told me that they are researching how to predict when a

gene will be accepted or rejected. Apparently there is some sort of receptor

that can be either " off " or " on " (so to speak). If the corrected gene is not

injected at the right time, it doesn't take. They are hoping that if they can

learn how to predict it accurately, there will be a higher success rate. They

may even be able to learn how to trigger it to be in the right position.

Also, read this:

Cure Research for Hyper-IgM Syndrome

Research list: The list of research areas and treatments under analysis

mentioned in various sources for Hyper-IgM Syndrome includes:

a.. CD40 ligand

Research discussion: In a mouse model of this disease, scientists have restored

the animal's ability to make antibodies and improved their survival by

administering man-made CD40 ligand, the molecule that allows T cells to

communicate with B cells. A study to determine whether this treatment will be

effective in humans is underway.

Anyway, I know it's tough, especially for those looking for a diagnosis. But

please know that there are people out there dedicated to finding cures for this

medical conditions. I'm praying for their success!

God bless,

Wenoka

Re: is going back to CHOP - Prayers Please!

snip

Although PID's can't be cured they can be treated.

snip

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Yet. All PID's can't be cured *yet*. And while we're waiting for those cures

to be discovered, thank God for the treatments! If my son had been born just 30

years ago, he probably would not have survived past 1 1/2 years, if that.

I just want to encourage all of you to hang in there. Research is going forward

looking for cures. They already know that BMT can cure some PID's, especially

when performed when the child is very young. The younger, the better rate of

success.

Last year, when Sam's blood was used as a prototype for a new method of

diagnosing (that takes a couple of days instead of the 2 - 3 months we had to

wait), the doctor talked to me about some of the *cures*, yes *cures*, that are

being researched for some of the PIDs. They've had successful cures of humans

using spliced genes. A good gene is spliced on to a " carrier " gene (usually a

particular form of virus known for rapid DNA replication) and injected into the

patient. The doctor told me that they are researching how to predict when a

gene will be accepted or rejected. Apparently there is some sort of receptor

that can be either " off " or " on " (so to speak). If the corrected gene is not

injected at the right time, it doesn't take. They are hoping that if they can

learn how to predict it accurately, there will be a higher success rate. They

may even be able to learn how to trigger it to be in the right position.

Also, read this:

Cure Research for Hyper-IgM Syndrome

Research list: The list of research areas and treatments under analysis

mentioned in various sources for Hyper-IgM Syndrome includes:

a.. CD40 ligand

Research discussion: In a mouse model of this disease, scientists have restored

the animal's ability to make antibodies and improved their survival by

administering man-made CD40 ligand, the molecule that allows T cells to

communicate with B cells. A study to determine whether this treatment will be

effective in humans is underway.

Anyway, I know it's tough, especially for those looking for a diagnosis. But

please know that there are people out there dedicated to finding cures for this

medical conditions. I'm praying for their success!

God bless,

Wenoka

Re: is going back to CHOP - Prayers Please!

snip

Although PID's can't be cured they can be treated.

snip

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Amy:

You're in our prayers, too.

I don't know if I ever gave you the details on 's issues, but some of

them resolved by age two and others not until age three. When she was age one,

the docs said she did NOT have THI because she had so many deficits, low IgG,

absent IgA, trouble making antibodies to multiple vaccines, t-cell involvement,

no isohemagglutinins, etc. At age two her IgG had come up but her IgA was

still absent, she finally had isohemagglutinins and I believe they retested her

T-cells (but that's the only paperwork I can't find - ??????), her HiB titers

had dropped again and she still wasn't making good titers to Prevnar. So her Dx

was changed to IgA def + Antibody def.

By age three, her IgA was not only " present " , but in the normal range! I

about choked! We keep rechecking her HiB titers every few years and having to

boost them, and still have the pneumo antibody def. But everything else is

FINE!!! So her Dx changed again to *just* the Antibody def, and you'll never

convince me to give up hope on that one either.

So of course don't bank on everything improving and be crushed if it's not,

but I'm just saying there's still time. I've even heard that the immune system

can take until age 5 - 7 to finish maturing.

Good luck!

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

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

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

[Guest guest]

Amy:

You're in our prayers, too.

I don't know if I ever gave you the details on 's issues, but some of

them resolved by age two and others not until age three. When she was age one,

the docs said she did NOT have THI because she had so many deficits, low IgG,

absent IgA, trouble making antibodies to multiple vaccines, t-cell involvement,

no isohemagglutinins, etc. At age two her IgG had come up but her IgA was

still absent, she finally had isohemagglutinins and I believe they retested her

T-cells (but that's the only paperwork I can't find - ??????), her HiB titers

had dropped again and she still wasn't making good titers to Prevnar. So her Dx

was changed to IgA def + Antibody def.

By age three, her IgA was not only " present " , but in the normal range! I

about choked! We keep rechecking her HiB titers every few years and having to

boost them, and still have the pneumo antibody def. But everything else is

FINE!!! So her Dx changed again to *just* the Antibody def, and you'll never

convince me to give up hope on that one either.

So of course don't bank on everything improving and be crushed if it's not,

but I'm just saying there's still time. I've even heard that the immune system

can take until age 5 - 7 to finish maturing.

Good luck!

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

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

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