hello

January 5, 2007

Hi, .

There is a program called K-12, nationally. http://www.k12.com/

Fox news has a piece on it, click on the website if you want to see the clip.

Depending on the state, K-12 may be considered a public charter school (have

access to credentialed teachers, from home or in classrooms, and a community of

friends for social stuff) or a homeschool (if the state has not yet adopted the

program). I do not believe that ND has adopted K-12, yet. So, right now, it is

probably being used as a homeschool program (pay as you go) in ND.

Some of the states, such as Nevada, are in the midst of adopting K-12 as a

public charter. I am not sure the status of ND but you might want to google

K-12 and call the admistrative office to check the status. It's a reasonable

choice for families that do not feel the " brick and mortar " schools meet their

children's needs, but they are not comfortable flying solo with homeschooling.

mom to Dani, CVID

hello

I am new to your group I have a daughter who is 4 she suffers from

Di Syndrome. She has had 3 open heart surgery's: Interrupted

Aortic Arch Type B, ASD, VSD, she has pulmonary stenosis,

hypocalceimia, asthma, med allergies, t and b cell defincy's due to an

absent thymus gland, port, had a g-tube (that has been removed, they

are now considering IVIG therapy's, It's been an open debate. She has

hyotonia of legs, seizures and more issues to numerous to add. She is

suppose to start kindergarten in the fall now we have a Dr that we see

who say's he doesn't want her in a regular classroom to be exposed to

illnesses. I have sent for all kinds of homeschool information but I

am struggling trying to find = the best homeschool cirriculm for her

as she is developmentally delayed. We currently have a Early

Childhood Special Ed teacher that comes out to our house, Physical

therapy, Occupational therapy, speech therapy for her. Does anyone

know of a good homeschool program we are in ND. I have called our

local school and not to pleased I don't want to go through them I was

considering culvers homeschool cirriculm but am unsure. Please help

if you have any ideas of where to start. w (ND)

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

January 7, 2007

hi,

Thanks for the help I have been trying to figure out what to do for

her next year. Is there anyone on the group that home schools their

kids and how do they do the schedule, etc.

>

> Hi, .

>

> There is a program called K-12, nationally. http://www.k12.com/

> Fox news has a piece on it, click on the website if you want to

see the clip.

>

> Depending on the state, K-12 may be considered a public charter

school (have access to credentialed teachers, from home or in

classrooms, and a community of friends for social stuff) or a

homeschool (if the state has not yet adopted the program). I do not

believe that ND has adopted K-12, yet. So, right now, it is

probably being used as a homeschool program (pay as you go) in ND.

>

> Some of the states, such as Nevada, are in the midst of adopting K-

12 as a public charter. I am not sure the status of ND but you

might want to google K-12 and call the admistrative office to check

the status. It's a reasonable choice for families that do not feel

the " brick and mortar " schools meet their children's needs, but they

are not comfortable flying solo with homeschooling.

>

> mom to Dani, CVID

>

> hello

>

> I am new to your group I have a daughter who is 4 she suffers from

> Di Syndrome. She has had 3 open heart surgery's:

Interrupted

> Aortic Arch Type B, ASD, VSD, she has pulmonary stenosis,

> hypocalceimia, asthma, med allergies, t and b cell defincy's due

to an

> absent thymus gland, port, had a g-tube (that has been removed,

they

> are now considering IVIG therapy's, It's been an open debate. She

has

> hyotonia of legs, seizures and more issues to numerous to add. She

is

> suppose to start kindergarten in the fall now we have a Dr that we

see

> who say's he doesn't want her in a regular classroom to be exposed

to

> illnesses. I have sent for all kinds of homeschool information

but I

> am struggling trying to find = the best homeschool cirriculm for

her

> as she is developmentally delayed. We currently have a Early

> Childhood Special Ed teacher that comes out to our house, Physical

> therapy, Occupational therapy, speech therapy for her. Does

anyone

> know of a good homeschool program we are in ND. I have called our

> local school and not to pleased I don't want to go through them I

was

> considering culvers homeschool cirriculm but am unsure. Please

help

> if you have any ideas of where to start. w (ND)

>

> 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

>

January 7, 2007

Hi ,

I've been homeschooling my kids (now 9 & 12) for more than 2 years. My

12 year old has CVID and I started homeschooling because he was sick all

the time from the germs being passed around public school. Homeschooling

has made an enormous difference in his health.

There are tons of curricula available. One of the best places to start

is " Homeschooling for Dummies. " It gives a great overview of what is out

there. There is very little you need to do with a 5-year-old -- probably

far less than an hour a day of traditional schooling. There are lots of

ways of learning other than textbooks, especially with the really young

kids. Some people follow an " unschooling " approach (based on the beliefs

of Holt) which means just following the child's interests and not

teaching anything formal. You can also pick and choose between more

formal and informal approaches that work for you.

I'd say that there were very few positives from having a sick kid ...

but homeschooling was definitely one of the few. I love homeschooling! I

love the time with my kids and the people we've gotten to know. I never

would have attempted it if it wasn't for my son's health problems, but

it's turned out to be an incredible blessing!

Sue in Phoenix

Mom to (12, CVID, asthma, celiac) and Angie (9, celiac)

" Education is not the filling of a pail, but the lighting of a fire. " --

Yeats

wrote:

>

> I am new to your group I have a daughter who is 4 she suffers from

> Di Syndrome. She has had 3 open heart surgery's: Interrupted

> Aortic Arch Type B, ASD, VSD, she has pulmonary stenosis,

> hypocalceimia, asthma, med allergies, t and b cell defincy's due to an

> absent thymus gland, port, had a g-tube (that has been removed, they

> are now considering IVIG therapy's, It's been an open debate. She has

> hyotonia of legs, seizures and more issues to numerous to add. She is

> suppose to start kindergarten in the fall now we have a Dr that we see

> who say's he doesn't want her in a regular classroom to be exposed to

> illnesses. I have sent for all kinds of homeschool information but I

> am struggling trying to find = the best homeschool cirriculm for her

> as she is developmentally delayed. We currently have a Early

> Childhood Special Ed teacher that comes out to our house, Physical

> therapy, Occupational therapy, speech therapy for her. Does anyone

> know of a good homeschool program we are in ND. I have called our

> local school and not to pleased I don't want to go through them I was

> considering culvers homeschool cirriculm but am unsure. Please help

> if you have any ideas of where to start. w (ND)

>

January 8, 2007

mbinpa wrote:

>

> I have joined this support group because my son is selective IgA

> deficient and I could use some guidance with the thoughts of what the

> future brings his way.

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

Welcome Beth! I don't know how much research you've done so far on

IgA deficiency or how much your doctors understand about it. Doctor

proficiency in the area of PID is extremely varied. So, I want to talk

about several things, just so that you have all the information that I

know to give you.

#1 First of all, we've had some kids diagnosed with IgA deficiency

because the doctors checked their IgA and found it to be missing. What

they didn't check was their IgG and IgM. That's vitally important to

know. Have your doctors checked to make sure that his IgG and IgM are

normal.

#2 Secondly, research a few years ago showed that a lot of people with

IgA deficiency also have low subclasses of IgG. Their total number of

IgG is good, but they are missing subclasses. There are 4 subclasses of

IgG that are testable at this point. So, if that has not been checked,

I highly recommend it.

#3 Make sure that he is being re-tested at least yearly, and possibly

even every 6 months. When my daughter started losing her immune system

at age 11, her numbers were just a little low, then each time we checked

they were lower. Every 6 months they kept dropping until we started IgG

replacement. If he is just in the beginning stages of this, his numbers

may still be changing -- so you need to keep an eye on his test results

to make sure that CVID is not developing.

#4 Finally, in the testing area, has his titers been checked to his

vaccinations? In other words, does his body build a response to

pneumovax vaccine, and tetanus or diptheria? That would be important to

know -- because sometime all the numbers are okay, but the IgG just

isn't working.

Then if you've actually had all the necessary testing and are absolutely

sure that IgA is the only problem -- prophylactic antibiotics, I

believe, is the treatment of choice. Most IgA deficient patients take

antibiotics to PREVENT infections and then add more antibiotics when

there's a breakthrough infection. Also, the use of nasal rinses (I

believe several in the group use the rhinoflow machine)and other

preventative stuff can help you reach a quality of life. But it is not

unusual to have to " over protect " them from infections. Especially if

they are in a bad stage. Each infection weakens their system and if you

are just piggy-backing one infection on top of another, that's a sign

that you need to watch the outside infection possibilities. It's really

hard to isolate and it's extremely hard to watch them be socially

deprived. What I can tell you is that it seems to get easier as they

get older -- just because they can take those precautions themselves.

Finally, remember you are not alone in this. Even though there's no

treatment for low IgA and there IS for low IgG, most of our kids have

both -- so you are in the right place.

So, ask your questions. Be sure and contact the Immune Deficiency

Foundation and ask for their Patient and Family Handbook. That number

is 1-800-296-4433. That book is free and will be shipped to you at no

cost.

Hope that helps,

In His service,

dale

January 9, 2007

,

Where are you at in ND??? I live in Mandan...I have a 4 yo with PID,

Not otherwise specified...He has an NK cell defect, hypogamm, selective

antibody deficiency.......we are doing SCIG and he has been better..

I don't post much anymore, as we are better, and I am working full

time...

Let me know if I can help with anything.

,

Mom to ...as above

igh--CAPD, cognitive issues and

Kaitlyn and Libby...healthy