Re: starts school tomorrow!!!

[Guest guest]

In a message dated 9/3/2003 4:12:21 PM Eastern Daylight Time,

tanya.claridge@... writes:

....I would be

interested to know how others have coped with a PID kid in

school..do you keep them at home if bugs are going around? How have

schools been about absences.. will miss at least 10 days this

term just through her IVIG and consultant appointments....last year

she missed 1/3rd of nursery sessions?

You will need to get an IEP for Other Health Impaired for her. This makes her

absenses not count against her, and also provides for extra help, tutoring

etc when she misses because of illness and any other issue or concern that you

can think of that her health will impact her learning. It doesn't mean that she

will be in special education, just that there will be provisions for her

regarding her health. You may need a doctor's note stating her exact diagnosis

etc

and what it means regarding absenses etc and treatments. Also, I found it

beneficial to have copies of IDF info for the school so that they could learn

about Kody's diagnosis themselves and I think it helps " prove " that this

virtually invisiable disorder is real! I think sometimes that because Kody

doesn't

always look sick that people assume he is fine when he is not.

Diane, Mom to Kody, age 7, precious and precocious who has Di Syndrome,

Hypogammaglobulinemia, epilepsy, asthma, chronic encopresis, and severe

cognitive regression. Also Mom to Arika age 16, Kaila, age 12, and Sami age 9

(she

happens to also be Dyslexic), and wife/soulmate to for 10 years.

check out my website: www.geocities.com/schmidtzoo/SNAK

[Guest guest]

In a message dated 9/4/2003 9:28:44 AM Eastern Daylight Time,

LLadden@... writes:

asked about SDS as one of the problems that is a possibility with current

manifestations, he said yes....Does anyone know any other gentic disorders

involving collagen, failure to thrive and sluggish immune system

Also, anyone hear of a murmur that increases in volume to being a structural

heart problem...

Di Syndrome does too. There are 180 different anomalies associated with

Di. Here is a link.... www.vcfs.net . I also like this site but it's a

UK site so some of the terminology is different. www.maxappeal.org.uk .

Diane

Life may not be the party we hoped for, but while we are here we might as

well dance!

[Guest guest]

In a message dated 9/4/2003 9:28:44 AM Eastern Daylight Time,

LLadden@... writes:

asked about SDS as one of the problems that is a possibility with current

manifestations, he said yes....Does anyone know any other gentic disorders

involving collagen, failure to thrive and sluggish immune system

Also, anyone hear of a murmur that increases in volume to being a structural

heart problem...

Di Syndrome does too. There are 180 different anomalies associated with

Di. Here is a link.... www.vcfs.net . I also like this site but it's a

UK site so some of the terminology is different. www.maxappeal.org.uk .

Diane

Life may not be the party we hoped for, but while we are here we might as

well dance!

[Guest guest]

In a message dated 9/4/03 6:08:01 AM Pacific Daylight Time,

LLadden@... writes:

> Also, anyone hear of a murmur that increases in volume to being a

> structural

> heart problem...

,

First of all, hang in there. My son has had two open heart surgeries to

correct structural problems, and has had a major heart murmur his entire life.

Has ever had an echocardiogram (which looks like an ultrasound)? I am

guessing not since it sounds like you haven't been to a Cardio? Heart murmurs

can be large or small, and can stay the same or change depending on how the

heart is functioning. Sometimes, a structural problem needs to be fixed, but it

completely depends on why he is having the murmur. Did they tell you that

must have prophylactic antibiotics each time he visits the Dentist or has

any type of invasive procedure--even minor surgery?

Sandi--Mom to , age 10. Immune Deficiency, Tetrology of Fallot, Mitral

Valve stenosis, chronic sinusitis, chronic ear infections, asthma, severe

allergies, GERD, Pulmonary Valve Transplant--July 18.

[Guest guest]

In a message dated 9/4/03 6:08:01 AM Pacific Daylight Time,

LLadden@... writes:

> Also, anyone hear of a murmur that increases in volume to being a

> structural

> heart problem...

,

First of all, hang in there. My son has had two open heart surgeries to

correct structural problems, and has had a major heart murmur his entire life.

Has ever had an echocardiogram (which looks like an ultrasound)? I am

guessing not since it sounds like you haven't been to a Cardio? Heart murmurs

can be large or small, and can stay the same or change depending on how the

heart is functioning. Sometimes, a structural problem needs to be fixed, but it

completely depends on why he is having the murmur. Did they tell you that

must have prophylactic antibiotics each time he visits the Dentist or has

any type of invasive procedure--even minor surgery?

Sandi--Mom to , age 10. Immune Deficiency, Tetrology of Fallot, Mitral

Valve stenosis, chronic sinusitis, chronic ear infections, asthma, severe

allergies, GERD, Pulmonary Valve Transplant--July 18.

[Guest guest]

In a message dated 9/4/2003 9:28:44 AM Eastern Daylight Time,

LLadden@... writes:

By the way, course of action is get a series of immunizations for all kinds

of bacterial infections(including one that can only be given when he hits

his 2nd birthday--Does anyone know which one that is?????), 2 sets of flu

vaccines, beginning October 1-daily dose of antibiotics and a second

antibiotic on the second day following the developemnt of cold symptoms.

I JUST WANT TO SCREAM!!!!!!

Pneumovax. It is like the prevnar only prevnar is supposed to protect against

7 different bacteria's and pneumovax protects against something like 27. And

the rest of the protocal is common for kids with immune disorders that are

not on IVIG. Flu vac's, daily antibiotics etc. Question would then be, what

happens if he gets sick repeatedly while on daily antibiotics. Also what were

his

IgG counts etc? If they were still too low, even with a mild response to the

prevnar, it isn't adequate protection against infection.

Diane

Life may not be the party we hoped for, but while we are here we might as

well dance!

[Guest guest]

In a message dated 9/4/03 7:41:18 AM Pacific Daylight Time,

SNAKpackmomma@... writes:

> If they were still too low, even with a mild response to the

> prevnar, it isn't adequate protection against infection.

>

I know we don't get IVIG in our house. However, as we are headed to an

Immuno, I think each child should be treated by the quality of their life. Too

many Docs go by what's on paper--not the actual day by day infection rate of the

child. They don't consider, for instance, that our kid's sinuses are filling

with scar tissue from repeated infections. They are just looking at the

numbers. Just my two cents.

Sandi--Mom to , age 10. Immune Deficiency, Tetrology of Fallot, Mitral

Valve stenosis, chronic sinusitis, chronic ear infections, asthma, severe

allergies, GERD, Pulmonary Valve Transplant--July 18.

[Guest guest]

In a message dated 9/4/03 7:41:18 AM Pacific Daylight Time,

SNAKpackmomma@... writes:

> If they were still too low, even with a mild response to the

> prevnar, it isn't adequate protection against infection.

>

I know we don't get IVIG in our house. However, as we are headed to an

Immuno, I think each child should be treated by the quality of their life. Too

many Docs go by what's on paper--not the actual day by day infection rate of the

child. They don't consider, for instance, that our kid's sinuses are filling

with scar tissue from repeated infections. They are just looking at the

numbers. Just my two cents.

Sandi--Mom to , age 10. Immune Deficiency, Tetrology of Fallot, Mitral

Valve stenosis, chronic sinusitis, chronic ear infections, asthma, severe

allergies, GERD, Pulmonary Valve Transplant--July 18.

[Guest guest]

I hate this!!! Went to the Infectious disease doc yesterday --

developed a response to Prevnar, weak, but some response-- pedi infectious

disease doc gave his current diagnosis as 'sluggish immune system'-- but

said now I have to find out WHY he has 'failure to thrive' AND 'sluggish

immune system'-- by a fluke he was watching him contort his body to get out

of the stroller and tested his joint movement and found that they move in a

range of ways they shouldn't-so he believes has a genetically based

disorder that involves the collagen-growth problems, possibly skeletal

problems--AND his heart murmur, which was echo'd at 2 1/2 months, now needs

to be re-checked because it is getting louder---

So now-- pedi cardiologist and Genetics doc-

I asked about SDS as one of the problems that is a possibility with current

manifestations, he said yes....Does anyone know any other gentic disorders

involving collagen, failure to thrive and sluggish immune system

Also, anyone hear of a murmur that increases in volume to being a structural

heart problem...

By the way, course of action is get a series of immunizations for all kinds

of bacterial infections(including one that can only be given when he hits

his 2nd birthday--Does anyone know which one that is?????), 2 sets of flu

vaccines, beginning October 1-daily dose of antibiotics and a second

antibiotic on the second day following the developemnt of cold symptoms.

I JUST WANT TO SCREAM!!!!!!

Re: starts school tomorrow!!!

In a message dated 9/3/2003 4:12:21 PM Eastern Daylight Time,

tanya.claridge@... writes:

....I would be

interested to know how others have coped with a PID kid in

school..do you keep them at home if bugs are going around? How have

schools been about absences.. will miss at least 10 days this

term just through her IVIG and consultant appointments....last year

she missed 1/3rd of nursery sessions?

You will need to get an IEP for Other Health Impaired for her. This makes

her

absenses not count against her, and also provides for extra help, tutoring

etc when she misses because of illness and any other issue or concern that

you

can think of that her health will impact her learning. It doesn't mean that

she

will be in special education, just that there will be provisions for her

regarding her health. You may need a doctor's note stating her exact

diagnosis etc

and what it means regarding absenses etc and treatments. Also, I found it

beneficial to have copies of IDF info for the school so that they could

learn

about Kody's diagnosis themselves and I think it helps " prove " that this

virtually invisiable disorder is real! I think sometimes that because Kody

doesn't

always look sick that people assume he is fine when he is not.

Diane, Mom to Kody, age 7, precious and precocious who has Di

Syndrome,

Hypogammaglobulinemia, epilepsy, asthma, chronic encopresis, and severe

cognitive regression. Also Mom to Arika age 16, Kaila, age 12, and Sami age

9 (she

happens to also be Dyslexic), and wife/soulmate to for 10 years.

check out my website: www.geocities.com/schmidtzoo/SNAK

[Guest guest]

PEd originally found the murmur at 2 1/2 months- it was faint, barely

discernable at the time and several peds had seen him before and never found

it-- sent him for a cardiac echo from the pedi cardiologists then and they

found that it was left ventricle based, from his structural small size-and

rubbing-- at the time they said it was innocent.

However, now every person, whether nurse, resp therapist, docs, etc ask

whether hearty has been checked as the murmur is sooo loud and always

discernable-- it seems to be getting louder and constant now.

Re: starts school tomorrow!!!

In a message dated 9/4/03 6:08:01 AM Pacific Daylight Time,

LLadden@... writes:

> Also, anyone hear of a murmur that increases in volume to being a

> structural

> heart problem...

,

First of all, hang in there. My son has had two open heart surgeries to

correct structural problems, and has had a major heart murmur his entire

life.

Has ever had an echocardiogram (which looks like an ultrasound)? I am

guessing not since it sounds like you haven't been to a Cardio? Heart

murmurs

can be large or small, and can stay the same or change depending on how the

heart is functioning. Sometimes, a structural problem needs to be fixed,

but it

completely depends on why he is having the murmur. Did they tell you that

must have prophylactic antibiotics each time he visits the Dentist or

has

any type of invasive procedure--even minor surgery?

Sandi--Mom to , age 10. Immune Deficiency, Tetrology of Fallot, Mitral

Valve stenosis, chronic sinusitis, chronic ear infections, asthma, severe

allergies, GERD, Pulmonary Valve Transplant--July 18.

[Guest guest]

Thank you!!! Pneumovax!! That was it!! so much info given yesterday I

couldn't remember and the genetic component just threw me!! The ped

immunologist wants to see him every month..he believes that has a 50/50

shot of a full blown CVID manifestation over time.. His IGg counts were

normal-- it it his lymphocytes- low, though not critical, but responses are

sluggish to absent--he sent his lymphocytes to Mayo clinic to test

responses.

Re: starts school tomorrow!!!

In a message dated 9/4/2003 9:28:44 AM Eastern Daylight Time,

LLadden@... writes:

By the way, course of action is get a series of immunizations for all kinds

of bacterial infections(including one that can only be given when he hits

his 2nd birthday--Does anyone know which one that is?????), 2 sets of flu

vaccines, beginning October 1-daily dose of antibiotics and a second

antibiotic on the second day following the developemnt of cold symptoms.

I JUST WANT TO SCREAM!!!!!!

Pneumovax. It is like the prevnar only prevnar is supposed to protect

against

7 different bacteria's and pneumovax protects against something like 27.

And

the rest of the protocal is common for kids with immune disorders that are

not on IVIG. Flu vac's, daily antibiotics etc. Question would then be, what

happens if he gets sick repeatedly while on daily antibiotics. Also what

were his

IgG counts etc? If they were still too low, even with a mild response to the

prevnar, it isn't adequate protection against infection.

Diane

Life may not be the party we hoped for, but while we are here we might as

well dance!

[Guest guest]

Thank you!!! Pneumovax!! That was it!! so much info given yesterday I

couldn't remember and the genetic component just threw me!! The ped

immunologist wants to see him every month..he believes that has a 50/50

shot of a full blown CVID manifestation over time.. His IGg counts were

normal-- it it his lymphocytes- low, though not critical, but responses are

sluggish to absent--he sent his lymphocytes to Mayo clinic to test

responses.

Re: starts school tomorrow!!!

In a message dated 9/4/2003 9:28:44 AM Eastern Daylight Time,

LLadden@... writes:

By the way, course of action is get a series of immunizations for all kinds

of bacterial infections(including one that can only be given when he hits

his 2nd birthday--Does anyone know which one that is?????), 2 sets of flu

vaccines, beginning October 1-daily dose of antibiotics and a second

antibiotic on the second day following the developemnt of cold symptoms.

I JUST WANT TO SCREAM!!!!!!

Pneumovax. It is like the prevnar only prevnar is supposed to protect

against

7 different bacteria's and pneumovax protects against something like 27.

And

the rest of the protocal is common for kids with immune disorders that are

not on IVIG. Flu vac's, daily antibiotics etc. Question would then be, what

happens if he gets sick repeatedly while on daily antibiotics. Also what

were his

IgG counts etc? If they were still too low, even with a mild response to the

prevnar, it isn't adequate protection against infection.

Diane

Life may not be the party we hoped for, but while we are here we might as

well dance!