Introduction

[Guest guest]

Dear Sue,

I have two sons. One with PID (9yrs old) another with an immune dysregulated

disease called Samter's syndrome or ASA. Both of my boys have undergone

sinus FESS surgeries. My 6 year old presents with horrible, debilitating

chronic rhino-sinusitis that is rampant. He suffers from Osteitis and

Osteomylitis as a result. We have had and continue to get opinions from

immunologists and ENTS all across the country as 's disease is so

extraordinary. He cultures bacteria about every 2-3 weeks. Feel free to ask

me any questions. We have " been there, and done that " as far as the sinus

thing goes. We live it daily!

Sincerely,

Autumn

[Guest guest]

Dear Sue,

I have two sons. One with PID (9yrs old) another with an immune dysregulated

disease called Samter's syndrome or ASA. Both of my boys have undergone

sinus FESS surgeries. My 6 year old presents with horrible, debilitating

chronic rhino-sinusitis that is rampant. He suffers from Osteitis and

Osteomylitis as a result. We have had and continue to get opinions from

immunologists and ENTS all across the country as 's disease is so

extraordinary. He cultures bacteria about every 2-3 weeks. Feel free to ask

me any questions. We have " been there, and done that " as far as the sinus

thing goes. We live it daily!

Sincerely,

Autumn

[Guest guest]

Dear Janet,

Question on the conjunctivitis - do they ever culture that or find anything?

Katy, my daughter has a very irritated eye that we call conjunctivitis but

they never find anything in the culture and it's usually not pus producing.

Both eyes are affected but usually only one at a time, and it happens at least

2 or 3 times a month with varying intensity. Some last only a few hours --

some 4 or 5 days. Some are simply not pretty, but others are excruciating.

Wish we had some answers, but our opthamologist has pretty much given up.

Since they clear without intervention in about the same time frame as with

treatment, we've decided to do nothing.

Please tell me about your son's conjunctivitis -- and anybody else out there

with this recurring problem?

Dale

[Guest guest]

Dear Janet,

Question on the conjunctivitis - do they ever culture that or find anything?

Katy, my daughter has a very irritated eye that we call conjunctivitis but

they never find anything in the culture and it's usually not pus producing.

Both eyes are affected but usually only one at a time, and it happens at least

2 or 3 times a month with varying intensity. Some last only a few hours --

some 4 or 5 days. Some are simply not pretty, but others are excruciating.

Wish we had some answers, but our opthamologist has pretty much given up.

Since they clear without intervention in about the same time frame as with

treatment, we've decided to do nothing.

Please tell me about your son's conjunctivitis -- and anybody else out there

with this recurring problem?

Dale

[Guest guest]

dear dale, thank you for responding I actually didnt think it got through when

i logged on because aol cut ot before i was done, anyway Simon has

conjunctivities most ot the time sometimes it is pus producing sometimes not.

When he is on antibiotics for an infection it seems to clear the condition.

When he has an ear or sinus infection the conjuctivities is usually our first

sign as it worsens. He has never had it cultured, although i have thougt

about it. He has been to the eye doctor numerous times, he doesnt seem to be

listening when i tell him about simons immune definency, he has come up with

various dignoses and prescribed lots of anti biotics all which clear it for a

whille. It also seems to clear after his ivig which he get evey 21 days, for

now i have decided to just live with it. The idea of having him on antibiotics

all the time doesnt appeal to me. Let me know any thought or ideas out there.

janet

[Guest guest]

dear dale, thank you for responding I actually didnt think it got through when

i logged on because aol cut ot before i was done, anyway Simon has

conjunctivities most ot the time sometimes it is pus producing sometimes not.

When he is on antibiotics for an infection it seems to clear the condition.

When he has an ear or sinus infection the conjuctivities is usually our first

sign as it worsens. He has never had it cultured, although i have thougt

about it. He has been to the eye doctor numerous times, he doesnt seem to be

listening when i tell him about simons immune definency, he has come up with

various dignoses and prescribed lots of anti biotics all which clear it for a

whille. It also seems to clear after his ivig which he get evey 21 days, for

now i have decided to just live with it. The idea of having him on antibiotics

all the time doesnt appeal to me. Let me know any thought or ideas out there.

janet

[Guest guest]

Dale,

I keep getting this E-mail and I think you want to talk to Janet. Try

again...Sorry I could not be of help.....I do have 2 sons with an immune

deficiency as well..

Sue W

[Guest guest]

Dale,

I keep getting this E-mail and I think you want to talk to Janet. Try

again...Sorry I could not be of help.....I do have 2 sons with an immune

deficiency as well..

Sue W

[Guest guest]

I am glad we brought up the topic of conjunctivitis. Cassie has a lot of

episodes of conjunctivitis. The ped always cultures it to see if it is

bacterial. It has always come up bacterial conjunctivitis (usually strep

pneumo [penicillin resistant), or H-flu.) We have tried all the eye drops.

But the one that I have found to work the best and longest period of time it

called Ciloxan. We do cromolyn eye drops for preventative, but that does not

seem to help very much. She seems to get them most in the early spring until

the early fall. So I do not know if allergies are playing a big role in the

drainage. But, if that is the case, would it not culture for a bacterial

infection? Or, does the allergy cause the secondary infection? I am not too

sure. Let me know if you have any luck treating the infections.

Thanks for the input.

Belinda Rose

[Guest guest]

Welcome ,

We're glad to have you in our group. Feel free to jump in and throw out

questions and comments any time. Glad to see that IVIG is good for .

It's really a wonderful thing when our kids get to be kids again.

Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD,

chronic sinusitis, IVIG,

[Guest guest]

Welcome ,

We're glad to have you in our group. Feel free to jump in and throw out

questions and comments any time. Glad to see that IVIG is good for .

It's really a wonderful thing when our kids get to be kids again.

Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD,

chronic sinusitis, IVIG,

[Guest guest]

Welcome ,

We're glad to have you in our group. Feel free to jump in and throw out

questions and comments any time. Glad to see that IVIG is good for .

It's really a wonderful thing when our kids get to be kids again.

Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD,

chronic sinusitis, IVIG,

[Guest guest]

Welcome ,

It sounds like you have had a tough few years too! I am glad Jake is doing

well and that you were able to get a diagnosis. Sometimes that is the hardest

part for all of us.

I just wanted to let you know that I am the Florida Vice President for the

Immune Deficiency Foundation. If you are in need of anything - please don't

hesitate to contact me. I will do my best to assist you in any way I can. We

are currently planning a family retreat for Florida in the end of August.

Please let me know if you are interested. It is a weekend filled with fun,

fellowship and education. I can be reached at . I live in

Bartow, Florida. My daughter and mother have CVID and receive IViG. Last

year we had 50 families with various immune deficiencies. It was a great

opportunity to learn and realize that we are a part of a bigger family dealing

with a chronic illness.

To ALL: Don't hesitate to contact me if you have any questions I will do my

best to assist and I also have information on IDF Chapters throughout the

states.

Warm Wishes & Sunshine to ALL

Gail

Kinsey's Mom -CVID

[Guest guest]

Welcome ,

It sounds like you have had a tough few years too! I am glad Jake is doing

well and that you were able to get a diagnosis. Sometimes that is the hardest

part for all of us.

I just wanted to let you know that I am the Florida Vice President for the

Immune Deficiency Foundation. If you are in need of anything - please don't

hesitate to contact me. I will do my best to assist you in any way I can. We

are currently planning a family retreat for Florida in the end of August.

Please let me know if you are interested. It is a weekend filled with fun,

fellowship and education. I can be reached at . I live in

Bartow, Florida. My daughter and mother have CVID and receive IViG. Last

year we had 50 families with various immune deficiencies. It was a great

opportunity to learn and realize that we are a part of a bigger family dealing

with a chronic illness.

To ALL: Don't hesitate to contact me if you have any questions I will do my

best to assist and I also have information on IDF Chapters throughout the

states.

Warm Wishes & Sunshine to ALL

Gail

Kinsey's Mom -CVID

[Guest guest]

Welcome ,

It sounds like you have had a tough few years too! I am glad Jake is doing

well and that you were able to get a diagnosis. Sometimes that is the hardest

part for all of us.

I just wanted to let you know that I am the Florida Vice President for the

Immune Deficiency Foundation. If you are in need of anything - please don't

hesitate to contact me. I will do my best to assist you in any way I can. We

are currently planning a family retreat for Florida in the end of August.

Please let me know if you are interested. It is a weekend filled with fun,

fellowship and education. I can be reached at . I live in

Bartow, Florida. My daughter and mother have CVID and receive IViG. Last

year we had 50 families with various immune deficiencies. It was a great

opportunity to learn and realize that we are a part of a bigger family dealing

with a chronic illness.

To ALL: Don't hesitate to contact me if you have any questions I will do my

best to assist and I also have information on IDF Chapters throughout the

states.

Warm Wishes & Sunshine to ALL

Gail

Kinsey's Mom -CVID

[Guest guest]

Gail,

I would like to know if there is an IDF chapter in South Texas? I would be

very interested in finding out any info. if you have any. Also, what kind of

retreat are you planning in August? I would love to try to make it to Florida

sometime. I think we are going to be there in December for sure, but we can

always move up our trip. Thanks!!!!!!

Belinda Rose

mom to Cassie, igg immunodefficient, asthma, chronic sinusitis

[Guest guest]

Gail,

I would like to know if there is an IDF chapter in South Texas? I would be

very interested in finding out any info. if you have any. Also, what kind of

retreat are you planning in August? I would love to try to make it to Florida

sometime. I think we are going to be there in December for sure, but we can

always move up our trip. Thanks!!!!!!

Belinda Rose

mom to Cassie, igg immunodefficient, asthma, chronic sinusitis

[Guest guest]

Gail,

I would like to know if there is an IDF chapter in South Texas? I would be

very interested in finding out any info. if you have any. Also, what kind of

retreat are you planning in August? I would love to try to make it to Florida

sometime. I think we are going to be there in December for sure, but we can

always move up our trip. Thanks!!!!!!

Belinda Rose

mom to Cassie, igg immunodefficient, asthma, chronic sinusitis

[Guest guest]

Hi Belinda,

Our Chapter Representative in South Texas is Kathy Crews - . She

can let you know about what is happening in Texas. She is a wonderful resource

and her brother who is immune deficient is also an Immunologist.

Our family retreat is currently for families who live in Florida. Because

this is a function put on by Florida for our local members we must first offer

it to our state's residents. I hope you understand - If we have openings I

could then invite families outside of our state. The national IDF is working

on having a National Patient Conference in the future - it may be another

year, but I know they are committed to having it. Other chapters are

considering an event like this, however, each chapter does what it is able to

with the funding they are able to raise and the volunteers they have to help

with it.

Gail

Kinsey's Mom - CVID

IDF Volunteer

[Guest guest]

Hi. We're new to PID. Blessings happen in many ways. At first you think

your alone and then a whole world opens up to you. Our son, , has been

diagnosed with hypo-agammaglobulinema. He's 5 years old and can charm anyone

who lets him. He's had numerous sinus surgeries. Been misdiagnosed often

since 9 mos. Now he is antibiotic resistant and just started IVIG (Bayer

product). We hope this is the right course for him. He is such a loving,

intelligent child, but now is becoming angry and mistrusting to new

treatments. We also have a 7 year old daughter, Ariel, who is feeling a

little left out at times. She has overall done well though, her school

counselor has been working with her on a program designed for children with

ill siblings. I look forward to hearing from everyone and glad for the

additional support. Thank you. Capri. ('s mom)

[Guest guest]

Debbie...welcome my friend! I do not need to introduce myself, you already

know me!

Great talking to you yesterday...hate to get a glimpse of that phone bill )

Glad to see you join this group as well!

Autumn mom to MArk Cd5 PID/ Samter's syndrome

[Guest guest]

introduction

Ha Betty Jo and everybody else here,

First, CONGRATULATIONS with your PhD!!!

And, something I may have said already on this list: Autikids sometimes bloom later, but the surely BLOOM!!!

It is great what you tell about Charlie being the Math. Champ. )

And I think EVERY progres, how little or big it is, it sure deserves an applause ))

About his obsession I want to say a few words too. My autikid Ruud (4.10yo) needs his obsessions. He needs to order, he needs to hold, he needs to be in his sight, he needs to be secure. If I take his obsession away, something else will get into that empty place. And that something maybe not as funny, or harmless as the one before.

I am glad Ruud has obsessions that don't bother anyone. My friend M has a ASD teenager whose obsession is to hit his younger brother! M has to lead him to another obsession ) You know what I mean?

Ruud's obsessions are making rows of wooden blocks all over the livingroom, building the most beautiful buildings (what's that word when something's left and right are exactly the same), bicycling laps on the square here, holding his enormous toy dog, with box and plastic saucer ))

If your son's obsession doesn't harm anybody, I think you just let him. Maybe make some agreement of how many new lightbulbs he can gather in a week (or something like that). (And......as long as YOU don't have to DUST them )))

P.S.

Meet the family:

Rob (41, NT)

me (37, ...?)

Robin (boy, 7, hyperactive)

Ruud (boy, 4, pdd-nos)

lie (girl, 2, hyperactive)

[Guest guest]

--- Betty Jo Marshall wrote:

> Hello List Members!

>

> Sharon invited me to join this list as we were

> both on another list full of controversy! I am a 43

> year old mother of 3 sons, and have a PhD (just last

> August) in early childhood education. My 22 year old

> son has mild ADD (takes Adderall and is in college),

> my 10 year old is brilliant and " typical " , and my

> 7-year-old is wonderful, but AS and ADHD. He takes

> Ritalin (zero concentration academically without it)

> and is in a " normal " first grade class with no IEP,

> etc. He has a wonderful teacher who is " looping " up

> to 2nd with his class next year. Yeah!! Charlie

> (the 7-year-old) came home this week with an award

> as " Math Champion " of his class. He makes all

> " satisfactory " or " excellent " on his report cards,

> except for the occasional " needs to improve " in

> " listens well " or " uses time well " (not surprising,

> huh??)Remarkable, but that is the way he is. He

> learns in " chunks " as someone put it. He didn't baby

> talk, but started with compound words and sentences

> at approaching age threee, couldn't count to 10 last

> year, but is now the " math champion " , etc. etc. I

> adore this child, but am still learning to

> understand him!!!!

>

> His obsession is lightbulbs. He has hundreds of

> all sizes and shapes in his room. I asked his doctor

> if we should encourage, discourage or ignore. He

> said it did not much matter as the obsession would

> persist until he acquires a new one. He is already

> interested in all things mechanical. He will

> probably be an engineer like his dad and grandpa.

> These genetics are something, aren't they??

>

> His doctor says his AS is " mild " and his

> prognosis is " excellent. " I hope he is correct. We

> are trying the gluten free and dairy free thing (no

> change so far), and also B6. I also plan to try

> vitamin A, which I hear is good for the visual

> stimulation thing.

>

> I welcome your comments. I am completely

> intrigued by this!!

>

> Best regards,

> Betty Jo Marshall

>

>

yes...hiBetty...hi everyone.

genetics!!

ADD runs all through my family...my aunt and her 8

kids...father...etc...etc...

and does Diet help??

i do not think so...but that is my OWN personal

opinion

but then again, for SOME conditions, it may help!

my own small advice would just be to maximize the

strenghts and minimize the waeknesses and have him

grow up to accept himself...

i wrote out a long advice to a mother with son and i

think i have it on file and if i do, i will mail it to

you!!

freestone

=====

seen on a bridge overpass, in Rochester, ny 1970

.... " AND THE TRUTH WILL MAKE YOU LAUGH " !

Freestone

freestonew@...

__________________________________________________

[Guest guest]

Dear (and Others on List):

Thank you for all your kind comments. Charlie has hundreds of

lightbulbs all over his room -- all kinds and colors. I couldn't dust them

if I wanted to, so I just step over them or pretend to not notice how messy

his room is. He takes a few with him when he goes to see his doctor. )

Last night he said that he wants me to buy him a ceiling fan. He wants this

so he can put it together (he is very good in that way.) He said, " I am

about ready to give up lightbulbs. " So I can imagine where he is going next.

He loves all things mechanical and being in the workshop with Dad. It is

hard to believe that a little boy can get that dirty!!

Best regards,

Betty Jo Marshall

________________________________________________________________________

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[Guest guest]

Thank you guys for the encouragement. As you all know that trying to

find the correct diagnosis can be frustrating. I have given all my AS

information to our family practice Dr. She is going to see on The

9th of May. If she can not help well I will find a new Dr. in Hawaii.

Did most of you guys know that your child was different from birth?

I have always known that their was something not right with . When

he was a baby he could not be held. Breast feeding was out of the

question. When I would hold him close to me he would arch his back and

try and get away. He spent most of the first year screaming. He would

get over stimulated by sound, light and toys. The only time he would not

scream seamed to be when he was in his swing. He would swing for hours

as soon as it stopped he would start to cry again. By the time he was

18months old the temper tantrums started. You never knew what would set

him off. He did not eat. He would not play with toys correctly, he

would just run around the house and tear things up. Toby and I were

going crazy. No help from our doctor they told me he was just being a

boy and not to worry. Language started around two. Normal language

development except for stuttering still in speech therapy. Fast forward

to age 7. has been tested for learning disabilities he has

problems with visual processing, auditory processing, overall processing

speed, and his short term memory. We are reviewing his IEP this next

week. His strengths are a superior verbal ability and math skill. Yet

he is having difficulty with reading, spelling, and handwriting.

has no friends at school or at home. He has a difficult time interacting

with other kids. right now all he cares about is pokemon and airplanes.

Well I have gone on long enough I look forward to hearing from everybody

again

God Bless,

Michele

________________________________________________________________

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