New to the group

[Guest guest]

Tia,

Welcome to the group. I am not as knowledgeable as most in this group, but

just wanted to let you know I understand how you feel guilty about Cheyann

being sick all of the time. I felt really bad when my son was sick ALL of the

time the first year of his life. Everyone thought I was over reacting including

my husband, mother, in-laws. pediatrician, etc etc. As a mother, I think

we feel that it is our responsiblity to keep our babies well and when they are

sick I think we feel as if we are failing as a mother. At least that is how

I felt. I am generally a very stable person, but I think I came close to a

nervous break down that first year. So, just know that you are doing all that

you can and probably more. I think when people act like that, they usually do

not mean harm, they just have never had to deal with what you are dealing with

and simply do not understand.

I know that I have not had as rough as a time as many of the wonderful people

in this group. But if I can offer one small piece of unasked for advise.

Try to find some time to yourself or time with your fiance. I wish I had done

that when was sick all of the time. I just felt so guilty about

leaving him in daycare, him being sick all of the time, that I thought I was a

bad

mother if I left him with a baby sitter.

Hang in there, I think you will find lots of needed support here.

Pam ( - (3 1/2) Selective IGA def, asthma; Logan - 12 weeks)

[Guest guest]

Tia,

Welcome! I also felt guilty prior to my son's diagnosis. My boss would

say, " I'm calling DYFS...what are you doing to this kid... " Now, he was

kidding about calling DYFS, but he assumed I was doing something wrong,

because it was not normal for a kid to be sick THAT MUCH! And I began to

believe that. What was I doing wrong???? Nothing! I did everything right.

Brought my son to the Dr. everytime he was ill. Told them that this wasn't

normal and what was wrong with him. My son was 4 and had just started

Pre-K, so they chalked his CONSTANT illnesses it to being home with mom for

4 years and now he's in school for the 1st time. He was sick for almost

the whole year...pneumonia, bronchitis (chronic...never went away

completely), ear infections and then finally a virus that really knocked his

socks off with a 105+ fever for 7 days.....7 days straight before they

hospitalized him....UGH. I find is frustrating that Drs. wait until

something major happens to look further or give that referral. I guess that

is where medicine is right now. We are a re-active vs. pro-active society

in some cases. Drs. are told by insurance companies what they can and can't

do, so they are pretty slow in giving out those referrals. And if you are

on state assistance...it is probably even harder.

Anyway, please don't feel guilty. Be your child's advocate and fight for

what you think she needs. Having a sick child is very stressful, and I was

close to a nervous breakdown that first year also. The first specialist my

pediatrician sent me to was also a infectious disease Dr. She did some

tests and then referred me to an immunologist...who then did more tests and

referred me to Children's Hospital of Philadelphia. Where do you live? The

process can take some time...but try to be patient. Good luck to you. You

have found the right place to get information and understanding.

Kim (Mom to 8 - CVID)

New To The Group

> Hi there. My name is Tia. I am almost 26 and a mom to two wonderful

> children. andre which is 3 and Cheyann which is 1 year. I had no

> idea how having a sick child could change my life so...

>

> When I had my son life was great he was never sick unless he got a

> normal cold here and there. Then I had my daughter. She did not look

> to well in the beginning but all the nurses and doctors reassurred

> me she was healthy average baby. She had alot of prblems with

> keeping her food down and never gained any weight. At one month old

> she started running fevers for no reason at all. They catherized her

> and she had a Unrinary Tract Infection, the start of one two many.

> Since her 1 year of life she has had at the least 30 catherizations

> and 10-15 UTI's one of which was Ecoli in the unrine. The docotrs

> still did not see anything wrong, even when she was letharget and

> not moving so much they still said she was just sick she'll be fine.

> She can not even geta cold without it going to full blown RSV or

> Bronchitus. She had 3 immune system tests that all came back there

> was something wrong. She had 5 out of the 6 that fight off

> infection. But since they kept telling me taht she'll grow out of it

> and shes just a healthy baby with some bad luck I let it got for a

> while. This past month was the worst of it though, she ran a fever

> of 105.3 and when I took her to the hospital they found she had

> pnemonia, conjunctivitus in both eyes and an ear infection. Her

> doctor finally decided lets send her to a Infectious Disease

> Specialist. Now I am awaiting the referal to see. I want a normal

> life. I tell people all the time if I had her first I would have

> never had a second!! And on top of all this my fiances Uncle tells

> me that his kid was sick once in her life time and my child being

> sick is my fault I must keep a dirty house. I already blame myself

> for my daughter being sick all the time but this just makes me even

> hate myself even more.

> Sorry I have to end this paragraph, its to hard for me to go into

> detail to much on that subject.

>

>

>

>

>

>

>

> 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]

Tai,

Welcome to the group.

I remember when my son was sick ALL the time. Everyone who knew me knew that he

was well cared for, but the pediatrician we had at the time just didn't get that

he could be okay one day and have a MAJOR ear infection the next. After about

the 3rd major infection, she started treating me like I was just not seeking

medical care for him when he needed it. I still remember the glare she gave me

when she gave him IV Rocephin during an office visit. Of course, it all made

sense later to her. But by then, I had decided to move his care to my GP, who

has been my doctor for over 30 years now.

I'm so glad you found our group and that it looks like your daughter's health is

getting a closer look. I know that it is hard now, it always is in the

beginning, but things do tend to get better, especially as the answers start

coming in.

I'm so glad that there is a chance that this is something that she will outgrow.

We think that my cousin must have had some form of immune deficiency when he was

a toddler - he used to have raging, unexplained fevers - but he outgrew it by

the time he was five. Good thing, since that was over 30 years ago, before

treatments were developed.

My kids are also on state insurance. You may want to take a closer look at what

is going on. I periodically get a notice, usually it has " THIS IS NOT A BILL "

in huge letters, but it basically says something is not going to be paid, then

gives the reason. The reason has ALWAYS (and I mean always, every time it's

happened) been because the medical facility didn't jump through all of the hoops

they were supposed. Something had not been completed correctly on the paperwork

end of it. I know some people have major problems with insurance, but I have to

say that, as far as AR Kids 1st in Arkansas is concerned, we have always gotten

every medical need taken care of with zero problems (only need appropriate

referral from primary physician). I have never seen an actual bill since the

kids have been on it. The only reason I know how much any of this costs is

because of getting the " rejection " notices.

So there may still be something that can be done so that the hospital stay is

covered. Could just be that someone failed to get the referral sent in.

Keep us posted on how things are going.

God bless,

Wenoka

PS - You sound like a GREAT mom!

[Guest guest]

Tai,

Welcome to the group.

I remember when my son was sick ALL the time. Everyone who knew me knew that he

was well cared for, but the pediatrician we had at the time just didn't get that

he could be okay one day and have a MAJOR ear infection the next. After about

the 3rd major infection, she started treating me like I was just not seeking

medical care for him when he needed it. I still remember the glare she gave me

when she gave him IV Rocephin during an office visit. Of course, it all made

sense later to her. But by then, I had decided to move his care to my GP, who

has been my doctor for over 30 years now.

I'm so glad you found our group and that it looks like your daughter's health is

getting a closer look. I know that it is hard now, it always is in the

beginning, but things do tend to get better, especially as the answers start

coming in.

I'm so glad that there is a chance that this is something that she will outgrow.

We think that my cousin must have had some form of immune deficiency when he was

a toddler - he used to have raging, unexplained fevers - but he outgrew it by

the time he was five. Good thing, since that was over 30 years ago, before

treatments were developed.

My kids are also on state insurance. You may want to take a closer look at what

is going on. I periodically get a notice, usually it has " THIS IS NOT A BILL "

in huge letters, but it basically says something is not going to be paid, then

gives the reason. The reason has ALWAYS (and I mean always, every time it's

happened) been because the medical facility didn't jump through all of the hoops

they were supposed. Something had not been completed correctly on the paperwork

end of it. I know some people have major problems with insurance, but I have to

say that, as far as AR Kids 1st in Arkansas is concerned, we have always gotten

every medical need taken care of with zero problems (only need appropriate

referral from primary physician). I have never seen an actual bill since the

kids have been on it. The only reason I know how much any of this costs is

because of getting the " rejection " notices.

So there may still be something that can be done so that the hospital stay is

covered. Could just be that someone failed to get the referral sent in.

Keep us posted on how things are going.

God bless,

Wenoka

PS - You sound like a GREAT mom!

[Guest guest]

Tia:

I'm sorry it's been so rough with your daughter. DON'T listen to people who

criticize you for your daughter's disease, that's just crazy. Would you be

blamed if she had diabetes or cancer or something else? Of course not. It's hard

to ignore those kind of comments but you must!!! If it was YOUR fault, why

wasn't your son this sick? Huh??? See, NOT your fault.

And as far as a dirty house. There are some people who quote studies where

they say if you expose your (healthy, normal) child to some dirt, you are

" priming " their immune system. These people criticize the germ-phobic people,

saying

they are doing more harm than good being " too " clean. Well, as with most

things in life, MODERATION is probably the key. You don't want to knowingly be

horribly filthy, but you don't have to necessarily have a sterile environment,

either! An example is that my sister has had her two children with her at work

since they were babies. This is an office of a construction company. There is

mud, dirt, dust, everything in the office and attached playroom. Once in awhile

there will be bugs or mice that get in. The kids aren't well-supervised so

they spill food and drink all over and leave it. It makes my skin crawl, as I am

pretty tidy. BUT I can tell you my sisters' kids are sick about one-billionth

as often as in our clean house!!! If a dirty environment caused

illness, my sisters' kids would be the sickest around!!! And they are not.

So it's not your house, it's her disease. And we can always hope it's

transient!!!! That is, maybe she'll outgrow it.

I did want to mention that e-coli in the urine would make me wonder if any

stool is getting in. Just to be sure, make sure you are wiping her front-to-back

and using a fresh baby wipe after every wipe. Just a thought. NOT your fault,

don't worry, just trying to think of anything that could possibly help.

I would definitely find an immunologist. saw specialists in " Infectious

Diseases and Immunology " . Well, I'd say they were more about Infectious

Diseases and not so much Immunology, and they never did help . We wasted

five

years with that practice and nothing has ever been done for . She's not

that bad off anymore (she outgrew most of her issues even though they thought

she wouldn't), but if she gets worse I'm getting a new doc, with Immunology as

their only specialty.

About the hospital stay not being covered -- look at that one again. Nearly

every time insurance has turned something down, it was because somebody didn't

dot the correct " i " or something. A simple paperwork error. It stinks to have

to stay on top of that garbage, but you have to. You need to look at the

" rejection " code and see what it says, then you call either the insurance or the

provider and tell them what it says. The provider may have to re-submit the bill

the right way. They are used to it, it happens all the time, unfortunately!!!

Another aggravation.

When was a baby I was still working, and I swear I spent an hour a day

just following up on insurance snafus. I had to quit my job on two hours'

notice finally, after 's second hospitalization and then another infection

after that... her ped told me to drive straight to my job and quit, that I had

to be home with her & that she needed to be isolated. I built a career there

over ten years and they had been so good to me... but was my true calling.

Don't hate yourself!!! Hate the disease, if you like, but not yourself. You

are using your instincts to fight for better care. It's not your fault your

daughter has this disease, you didn't ask for it and you didn't cause it. I was

in a car accident while pregnant with , her placenta abrupted and she was

born six weeks early. I think that may have been the cause of her problems.

But you know what, I STILL don't blame myself. Things happen for a reason, I

really believe that. You are strong and you are fighting for your daughter.

The fact that you thought she didn't look well from the start and the docs

kept " reassuring " you she was fine, well that just shows that from the start

your Mommy's Instinct told you something was not right. So see, you're doing all

you can!! Keep up the great job. It's a tough job, but you were chosen for it

and Cheyann is in good hands.

Welcome to the group --

(mom to , age 6, currently has polysaccharide antibody def,

previously had transient IgG, IgA, t-cell & other defs (also has

dairy-intolerant-related GERD; and also to Kate, age 2-1/2, more dairy

intolerant but very

healthy!)

[Guest guest]

Tia:

I'm sorry it's been so rough with your daughter. DON'T listen to people who

criticize you for your daughter's disease, that's just crazy. Would you be

blamed if she had diabetes or cancer or something else? Of course not. It's hard

to ignore those kind of comments but you must!!! If it was YOUR fault, why

wasn't your son this sick? Huh??? See, NOT your fault.

And as far as a dirty house. There are some people who quote studies where

they say if you expose your (healthy, normal) child to some dirt, you are

" priming " their immune system. These people criticize the germ-phobic people,

saying

they are doing more harm than good being " too " clean. Well, as with most

things in life, MODERATION is probably the key. You don't want to knowingly be

horribly filthy, but you don't have to necessarily have a sterile environment,

either! An example is that my sister has had her two children with her at work

since they were babies. This is an office of a construction company. There is

mud, dirt, dust, everything in the office and attached playroom. Once in awhile

there will be bugs or mice that get in. The kids aren't well-supervised so

they spill food and drink all over and leave it. It makes my skin crawl, as I am

pretty tidy. BUT I can tell you my sisters' kids are sick about one-billionth

as often as in our clean house!!! If a dirty environment caused

illness, my sisters' kids would be the sickest around!!! And they are not.

So it's not your house, it's her disease. And we can always hope it's

transient!!!! That is, maybe she'll outgrow it.

I did want to mention that e-coli in the urine would make me wonder if any

stool is getting in. Just to be sure, make sure you are wiping her front-to-back

and using a fresh baby wipe after every wipe. Just a thought. NOT your fault,

don't worry, just trying to think of anything that could possibly help.

I would definitely find an immunologist. saw specialists in " Infectious

Diseases and Immunology " . Well, I'd say they were more about Infectious

Diseases and not so much Immunology, and they never did help . We wasted

five

years with that practice and nothing has ever been done for . She's not

that bad off anymore (she outgrew most of her issues even though they thought

she wouldn't), but if she gets worse I'm getting a new doc, with Immunology as

their only specialty.

About the hospital stay not being covered -- look at that one again. Nearly

every time insurance has turned something down, it was because somebody didn't

dot the correct " i " or something. A simple paperwork error. It stinks to have

to stay on top of that garbage, but you have to. You need to look at the

" rejection " code and see what it says, then you call either the insurance or the

provider and tell them what it says. The provider may have to re-submit the bill

the right way. They are used to it, it happens all the time, unfortunately!!!

Another aggravation.

When was a baby I was still working, and I swear I spent an hour a day

just following up on insurance snafus. I had to quit my job on two hours'

notice finally, after 's second hospitalization and then another infection

after that... her ped told me to drive straight to my job and quit, that I had

to be home with her & that she needed to be isolated. I built a career there

over ten years and they had been so good to me... but was my true calling.

Don't hate yourself!!! Hate the disease, if you like, but not yourself. You

are using your instincts to fight for better care. It's not your fault your

daughter has this disease, you didn't ask for it and you didn't cause it. I was

in a car accident while pregnant with , her placenta abrupted and she was

born six weeks early. I think that may have been the cause of her problems.

But you know what, I STILL don't blame myself. Things happen for a reason, I

really believe that. You are strong and you are fighting for your daughter.

The fact that you thought she didn't look well from the start and the docs

kept " reassuring " you she was fine, well that just shows that from the start

your Mommy's Instinct told you something was not right. So see, you're doing all

you can!! Keep up the great job. It's a tough job, but you were chosen for it

and Cheyann is in good hands.

Welcome to the group --

(mom to , age 6, currently has polysaccharide antibody def,

previously had transient IgG, IgA, t-cell & other defs (also has

dairy-intolerant-related GERD; and also to Kate, age 2-1/2, more dairy

intolerant but very

healthy!)

[Guest guest]

Tia, Your story felt so familiar to me. It is amazing the awareness is so

low for immune problems in children. We went through similar issues with

reflux, then constant fevers psmonia, ear infections and so on. Be brave

and fight hard. We actually had to switch ped. before someone was willing

to take a look at our son he is now 3 and it has been devestating

to our family I am unable to go back to school to finish my degree and

left my job. Now, the happy stuff he is on ivig every three weeks and we

have a home nurse. He has syarted preschool with a class size of 4!! He

has his monments like the past two months two sinus infections and the

croup but it's our way of life now and we just hope it passes and you know

it does..best of luck to you and your family. remember we have all been

where you are ...Dawn mother to , cvid, developmental delay,

torticolis, acid reflux asthma, developmentally delayed but sooooo cute...

--- Tia <tiawyre@...> wrote:

> Hi there. My name is Tia. I am almost 26 and a mom to two wonderful

> children. andre which is 3 and Cheyann which is 1 year. I had no

> idea how having a sick child could change my life so...

>

> When I had my son life was great he was never sick unless he got a

> normal cold here and there. Then I had my daughter. She did not look

> to well in the beginning but all the nurses and doctors reassurred

> me she was healthy average baby. She had alot of prblems with

> keeping her food down and never gained any weight. At one month old

> she started running fevers for no reason at all. They catherized her

> and she had a Unrinary Tract Infection, the start of one two many.

> Since her 1 year of life she has had at the least 30 catherizations

> and 10-15 UTI's one of which was Ecoli in the unrine. The docotrs

> still did not see anything wrong, even when she was letharget and

> not moving so much they still said she was just sick she'll be fine.

> She can not even geta cold without it going to full blown RSV or

> Bronchitus. She had 3 immune system tests that all came back there

> was something wrong. She had 5 out of the 6 that fight off

> infection. But since they kept telling me taht she'll grow out of it

> and shes just a healthy baby with some bad luck I let it got for a

> while. This past month was the worst of it though, she ran a fever

> of 105.3 and when I took her to the hospital they found she had

> pnemonia, conjunctivitus in both eyes and an ear infection. Her

> doctor finally decided lets send her to a Infectious Disease

> Specialist. Now I am awaiting the referal to see. I want a normal

> life. I tell people all the time if I had her first I would have

> never had a second!! And on top of all this my fiances Uncle tells

> me that his kid was sick once in her life time and my child being

> sick is my fault I must keep a dirty house. I already blame myself

> for my daughter being sick all the time but this just makes me even

> hate myself even more.

> Sorry I have to end this paragraph, its to hard for me to go into

> detail to much on that subject.

>

>

>

>

>

__________________________________

Discover

Stay in touch with email, IM, photo sharing and more. Check it out!

http://discover./stayintouch.html

[Guest guest]

Tia, Your story felt so familiar to me. It is amazing the awareness is so

low for immune problems in children. We went through similar issues with

reflux, then constant fevers psmonia, ear infections and so on. Be brave

and fight hard. We actually had to switch ped. before someone was willing

to take a look at our son he is now 3 and it has been devestating

to our family I am unable to go back to school to finish my degree and

left my job. Now, the happy stuff he is on ivig every three weeks and we

have a home nurse. He has syarted preschool with a class size of 4!! He

has his monments like the past two months two sinus infections and the

croup but it's our way of life now and we just hope it passes and you know

it does..best of luck to you and your family. remember we have all been

where you are ...Dawn mother to , cvid, developmental delay,

torticolis, acid reflux asthma, developmentally delayed but sooooo cute...

--- Tia <tiawyre@...> wrote:

> Hi there. My name is Tia. I am almost 26 and a mom to two wonderful

> children. andre which is 3 and Cheyann which is 1 year. I had no

> idea how having a sick child could change my life so...

>

> When I had my son life was great he was never sick unless he got a

> normal cold here and there. Then I had my daughter. She did not look

> to well in the beginning but all the nurses and doctors reassurred

> me she was healthy average baby. She had alot of prblems with

> keeping her food down and never gained any weight. At one month old

> she started running fevers for no reason at all. They catherized her

> and she had a Unrinary Tract Infection, the start of one two many.

> Since her 1 year of life she has had at the least 30 catherizations

> and 10-15 UTI's one of which was Ecoli in the unrine. The docotrs

> still did not see anything wrong, even when she was letharget and

> not moving so much they still said she was just sick she'll be fine.

> She can not even geta cold without it going to full blown RSV or

> Bronchitus. She had 3 immune system tests that all came back there

> was something wrong. She had 5 out of the 6 that fight off

> infection. But since they kept telling me taht she'll grow out of it

> and shes just a healthy baby with some bad luck I let it got for a

> while. This past month was the worst of it though, she ran a fever

> of 105.3 and when I took her to the hospital they found she had

> pnemonia, conjunctivitus in both eyes and an ear infection. Her

> doctor finally decided lets send her to a Infectious Disease

> Specialist. Now I am awaiting the referal to see. I want a normal

> life. I tell people all the time if I had her first I would have

> never had a second!! And on top of all this my fiances Uncle tells

> me that his kid was sick once in her life time and my child being

> sick is my fault I must keep a dirty house. I already blame myself

> for my daughter being sick all the time but this just makes me even

> hate myself even more.

> Sorry I have to end this paragraph, its to hard for me to go into

> detail to much on that subject.

>

>

>

>

>

__________________________________

Discover

Stay in touch with email, IM, photo sharing and more. Check it out!

http://discover./stayintouch.html

[Guest guest]

Welcome Heidi!

You have come far in your journey and been thru so much! Your poor little one

sounds like a trooper! My first thing would be genetic testing specially after

reading all of the issues your little one has. Before giving a DX it would

seem to me that the doc do the testing since is a rule out DX.

mom to BReana age 4 and 15

MA

New to the Group

Hi, I'd like to introduce myself. I am the Mother of three children ...

when my second daughter came along with asthma and I thought I had been thru

the ringer but I found there are many other illnesses out there much more

puzzling, stressful and scary to say the least ... cuz then came my son.

My son Mason was born very healthy. He had colic and I thought that was bad

... boy does that seem like a walk in the park now.

Right before his first birthday be had his first fever. We ended up in the

ER with him because it went over 103 and was extremely lethargic. They told

me he had an ear infection; however, never pulled at his ear.

Anyways, he began getting sick almost monthly. Sometimes he'd just get this

fever with really no other symptoms; however, other times would get

incredibly sick and need antibiotics due to it going bacterial.

By 2003, my son experienced a sigmoid volvulus ... it was at this time we

discovered our son was born with a redundant colon and that his colon now

began twisting up which caused him incredibly severe pain. He also dealt

with chronic constipation.

2003 flew by because of how sickly he was that whole year ... his sigmoid

volvulus ended up giving him enterocolitis and so it was deemed that the

extra length of intestine had to be removed. So he underwent a sigmoid

colon resection. He also had to have 3 polyps removed in 2004.

During all of this he kept experiencing these cyclic fevers; however,

everyone always assumed they were due to the sigmoid colon twisting ...

well, after July of last year we noticed the fevers were still happening and

then he began with a mouthful/throat full of ulcers and the lymph nodes in

his neck would swell beyond belief. The fevers were bad enough to deal with

as they always would go over 104 and Tylenol/Motrin would not help to bring

them down. The additional symptoms have made it even worse because now he

won't eat while the ulcers are present.

Due to the GI problems, he isn't gaining weight properly. He is very skinny

and weighs 30-32 pounds at almost 5 years old. He also has acid reflux and

asthma due to the GI problems.

So, we take him to see an Infectious Disease/Immunology Specialist at CHOP

in Philadelphia yesterday and he tells us that it is possible our son has

or else he has cyclic neutropenia. He also gave us a prescription for

steroids to give to him during his next fever episode and told us that if it

alleviates his symptoms, then it is definitely ; however, if it doesn't

alleviate the symptoms then we will need to have him tested for cyclic

neutropenia. We don't have any genetic disorders in our family history that

we know of, which is how the specialist felt he could rule out other things.

The Doctor would have liked to try giving him a regimen of Tagamet; however,

he isn't allowed to have this medication due to the GI problems.

I would really appreciate any help or advice anyone can offer. His next

fever is supposed to hit on July 5 so its not that far away and we're

already dreading it. It seems that our son is only healthy for 2 weeks each

month ... and it gets very stressful for my entire family.

Sorry this email is so long ... I actually cut some stuff out but wanted you

to get the picture of all he's been through. I hate that he has to be sick

like this all the time.

Heidi

Mommy of Mason, almost 5 years old, rectal myectomy 8/03, sigmoid colon

resection surgery to correct sigmoid volvulus 9/03, triple polypectomy 7/04,

acid reflux, asthma, and now or cyclic neutropenia; (11 years

old), Amber (9 years old and asthmatic) and happily married to of 12

years

burg, Pennsylvania USA

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

[Guest guest]

hi debra and welcome. congrats on your weight loss. before you know it you will be there

kassia.

Sports Rekindle the Rivalries. Sign up for Fantasy Football

[Guest guest]

Welcome Debra

On 6/27/05, debra082002 <debra082002@...> wrote:

Hi A11!My name is Debra -- Be a F.R.O.G . °Ü°GLYSDI,Gymmie in Texas

Compliments of Tae Bo2 Hours A Day5 Days A Week

[Guest guest]

Dear Mom;

I hear the fear in your words... I remember all too well the feeling. It's a scary journey at the onset. I can remember being overwhelmed with unfamiliar terminology, scales, questions, social histories (which sometimes felt like inquisitions), and appointments. My son, now 14, has Autism with a companion IQ (intelligence quotient) in the MOID (moderate intellectual disability) range. I had so many questions and contented myself for many years searching out every morsel of information I could, hoping to find the "magic" answer I craved.

The bad news is that there is no "magic" answer! The good news is that whether or not your child is diagnosed with P.D.D. or Autism Spectrum Disorder, he is still the same little boy you lovingly tuck into bed each night. He's still the same child that loved Chuck E. Cheese's and doesn't recoil from the touch of strangers. He's still perfect!!

P.D.D. (Pervasive Development Disorder) and Autism are terms used to describe certain attributes of a disorder. They should not be used (ever) to describe a child. One child may manifest stemming behaviors or prefer social isolation while another struggles with language acquisition but is relatively friendly with peers. Some children with Autism (mine included) use echolalic speech while others have a greater command of initiating or maintaining conversation. The "characteristics" of Autism are as diverse as the children it affects.

Speech Pathologists, as well as every other professional, can give you information, but (please hear this) they cannot know who or what your child will become. I implore you to use the guidance of these people as such and not as imperialistic rule. The simple truth of the matter is that God and God alone knows the child HE created.

You have been chosen for an awesome task, and though at times the weight of it all can be heavy, you find there is immense joy too! Don't lose sight of the child you love! Don't take your eyes off of the ABILITY of your son! There will be plenty of folks ready to remind you of weaknesses (or supposed weaknesses), you must concentrate on the strengths.

If you are given a diagnosis, it's a new journey. A fantastic new journey! Of course, there will be bumps and bruises...there always are... but my what a wonderful ride. Take a look around you, you aren't alone... we are all here with you. Perhaps you haven't a single neighbor or family member who will immediately understand... but I'm here.. my friends and colleauges beside me, and lest you forget, God is still here too!

The perfect creation that was born to you is still flawless and God still has a plan for his life. Watch and discover the beauty of it all!

With much love for you and your family,

Iglesiassamantha <dsmom1101@...> wrote:

Hello all,I am the mother to a soon to be 3 y/o boy with language delays and suspected to be on the spectrum. I am in the process of getting him evaluated. I don't mean to bother those parents who have been where I am (feeling down some days at the impending diagnosis of knowing what I already feel in my heart). My question is this : My husband was a late talker and had comprehension problems all the way through school in which he had to be in "special ed" classes. Our son loves going out family vacations, eats everything under the sun besides banana cream and yogurt(but loves pudding) . Yesterday we took him to Chucky Cheese which I thought would be the ultimate test. He LOVED it. He even followed one kid around in the big play maze thingy. He doesnt mind being touched by strangers, doesnt mind sleeping at different places( I

was in the hospital 6 weeks ago having my daughter and he was fine even slept at his sitters house with no tears) I have these ideas in my mind because of his therapist. In his initial meeting with his speech therapist she thought he was sweet and engaged then she started asking us about his eating habits etc etc. He knows that peepee means the he is to sit on the potty and go. Sorry to be blabbing so much but I feel soooo very alone. I have so much hope for him yet I am so afraid He loves the outside world but his speech therapist has come some of her own conclusions even though I have asked his teachers at daycare how he plays (very well and even calls some kids by their names). She has all of sudden started pushing all day in the school system. His favorite words right now are NO and the dreaded mine. I know BCW is supposed to help me but even though I know he needs help and that is why we have gotten him help

and he has met all his goals his speech therapist told me "he will never catch up even though he is gaining ground. I found it shocking that she has so much inconsistency in saying he is overstimulated by the kids one week and then they come running in to join the group in which he is mimicing all the words they say while teaching him. I have made my self sick losing sleep trying to distingush what is true pretend play <riding his stuffed simba like a house , pretending to read a book, pretending eat food off the pages then drawing us in by feeding it to us> . I am sorry this is so long but my heart is breaking he does little odd things from time to time but is loving and fun. I guess I didnt have a question but needed to vent and not feel so alone.Thank You __________________________________________________

[Guest guest]

" he will never catch up even though he is

gaining ground.’

No one can, or should, tell you that a 3 year old is never going to

catch up. No matter how experienced they are, kids can be very unpredictable

and there are new methods being developed all of the time. We have been told

many times that our son would never do something. Since he was unaware of this,

he eventually goes ahead and does it anyway. Now whenever we hear those words

we bring up the other times he has exceeded expectations, and then ask how we

are going to get around this obstacle.

Marie

[Guest guest]

-

1) Fire your speech therapist;

2) Re-read post 13959 - excellent response.

I recall our journey and being at the place where you are now.

Remember this, whatever the diagnosis, the feeling that you have now

gets better (much better) over time.

And above all, be a skeptic of everything you read. Each child is

different and result in different outcomes.

Good luck!!!

> Hello all,

> I am the mother to a soon to be 3 y/o boy with language delays

and

> suspected to be on the spectrum. I am in the process of getting

him

> evaluated. I don't mean to bother those parents who have been

where

> I am (feeling down some days at the impending diagnosis of knowing

> what I already feel in my heart). My question is this : My husband

> was a late talker and had comprehension problems all the way

through

> school in which he had to be in " special ed " classes. Our son

loves

> going out family vacations, eats everything under the sun besides

> banana cream and yogurt(but loves pudding) . Yesterday we took him

> to Chucky Cheese which I thought would be the ultimate test. He

> LOVED it. He even followed one kid around in the big play maze

> thingy. He doesnt mind being touched by strangers, doesnt mind

> sleeping at different places( I was in the hospital 6 weeks ago

> having my daughter and he was fine even slept at his sitters house

> with no tears) I have these ideas in my mind because of his

> therapist. In his initial meeting with his speech therapist she

> thought he was sweet and engaged then she started asking us about

> his eating habits etc etc. He knows that peepee means the he is to

> sit on the potty and go. Sorry to be blabbing so much but I feel

> soooo very alone. I have so much hope for him yet I am so afraid

He

> loves the outside world but his speech therapist has come some of

> her own conclusions even though I have asked his teachers at

daycare

> how he plays (very well and even calls some kids by their names).

> She has all of sudden started pushing all day in the school

system.

> His favorite words right now are NO and the dreaded mine. I know

BCW

> is supposed to help me but even though I know he needs help and

that

> is why we have gotten him help and he has met all his goals his

> speech therapist told me " he will never catch up even though he is

> gaining ground. I found it shocking that she has so much

> inconsistency in saying he is overstimulated by the kids one week

> and then they come running in to join the group in which he is

> mimicing all the words they say while teaching him. I have made my

> self sick losing sleep trying to distingush what is true pretend

> play <riding his stuffed simba like a house , pretending to read a

> book, pretending eat food off the pages then drawing us in by

> feeding it to us> . I am sorry this is so long but my heart is

> breaking he does little odd things from time to time but is loving

> and fun. I guess I didnt have a question but needed to vent and

not

> feel so alone.

> Thank You

[Guest guest]

Speech Therapists are wonderful members of our team. You set the goals and are your child's best advocate. Sounds like you are very keen on your son's needs already.I would not want a ST assisting my son with such a poor attitude. I had to fire an OT once because violated our privacy. There are good and bad in every profession.We have had a wonderful ST for 2 years she is so hopeful and optistic and my once non-verbal son is doing really well with her. Your son sounds like he has some real strengths get a new ST.

> Hello all,> I am the mother to a soon to be 3 y/o boy with language delays and > suspected to be on the spectrum. I am in the process of getting him > evaluated. I don't mean to bother those parents who have been where > I am (feeling down some days at the impending diagnosis of knowing > what I already feel in my heart). My question is this : My husband > was a late talker and had comprehension problems all the way through > school in which he had to be in "special ed" classes. Our son loves > going out family vacations, eats everything under the sun besides > banana cream and yogurt(but loves pudding) . Yesterday we took him > to Chucky Cheese which I thought would be the ultimate test. He > LOVED it. He even followed one kid around in the big play maze > thingy. He

doesnt mind being touched by strangers, doesnt mind > sleeping at different places( I was in the hospital 6 weeks ago > having my daughter and he was fine even slept at his sitters house > with no tears) I have these ideas in my mind because of his > therapist. In his initial meeting with his speech therapist she > thought he was sweet and engaged then she started asking us about > his eating habits etc etc. He knows that peepee means the he is to > sit on the potty and go. Sorry to be blabbing so much but I feel > soooo very alone. I have so much hope for him yet I am so afraid He > loves the outside world but his speech therapist has come some of > her own conclusions even though I have asked his teachers at daycare > how he plays (very well and even calls some kids by their names). > She has all of sudden started pushing all day in the school system. > His favorite

words right now are NO and the dreaded mine. I know BCW > is supposed to help me but even though I know he needs help and that > is why we have gotten him help and he has met all his goals his > speech therapist told me "he will never catch up even though he is > gaining ground. I found it shocking that she has so much > inconsistency in saying he is overstimulated by the kids one week > and then they come running in to join the group in which he is > mimicing all the words they say while teaching him. I have made my > self sick losing sleep trying to distingush what is true pretend > play <riding his stuffed simba like a house , pretending to read a > book, pretending eat food off the pages then drawing us in by > feeding it to us> . I am sorry this is so long but my heart is > breaking he does little odd things from time to time but is loving > and fun. I guess I didnt have a

question but needed to vent and not > feel so alone.> Thank You__________________________________________________

[Guest guest]

Hello,

First, vent away and share your concerns. Never hesitate to do that, as you will find both support and answers from others.

Second, when my HFA (high-functioning autism) child was 2 1/2 yo, he had the speech of a 6 month old. He went into ST and flourished. He speaks with others, engages in conversations, engages in groups and has a completely integrated school life. So, there is hope of catching up and far superceding the others in his class.

Yet, there are times when he can't talk with others, shuts himself down from the world and focuses in on his interests, etc... This "inconsistency" is part of his autism. He is often on the outside looking in, especially in social situations. His peers are far beyond him socially now. The differences are becoming more obvious. But, he doesn't let it stop him from anything.

I agree with the others. Don't listen to people saying that he can't do something or won't catch up. I believe you have to let your child show you what he can do and is able to do. You will surprised.

Perhaps the very best advice here is to never look at your child as different. This is truly a journey that you have been chosen to walk through. And, the best part of the journey is that you have your child walking with you. God has a special plan for all of His children.

It's normal to have sleepless nights and stressed out days and to feel totally overwhelmed. In those moments, watch your son sleeping and you will see the perfect answer to all your worries.

Please don't hesitate to contact me off list if you would like to talk about our journey.

Fondly,

L.

"Truth is High, Higher still is truthful living." Guru Nanak Devji__________________________________________________

[Guest guest]

dear hanna,

how can i ever express my gratitude to your family for all you have

endured with your mom such an advopcate for my yet to be born son?

because of your moms and others efforts, i knew to spread out and

delay many of his shots. he was born in 2001. it sickens me now to

know that my son was at risk genetically from all shots and should

have postponed them even longer. however, b/c of your moms info i

truly believe his autism was not given the triggers to proegress any

further!! he was dx'd at 19mos when he stopped talking 1 wk after

his combivax and dtap at 13mos. so please tell your mom that i am

forever thankful for her time and efforts.

since begnning biomed stuff, he is now a very HFA child at 4.5yo.

if you ever want to hid north to alpha/cumming to speak at support

group meetings, let me know!! hugs galore!!

> Hello ALL!

> I am new to the group and am thankful that I was able

> to join. I am the daughter of Lyn Redwood (president

> of Safeminds.org). I was ten when my little brother

> Will was born, I am now 21 and he is 11. Daily I am

> reminded of how much potential Will had and yet I am

> so proud to see how very far he has come. He just

> began 6th grade at a Montessori school, and over the

> past 3 years he has been achieving average and above

> average grades. I know my view is different

> considering I am the sister of a child with an autism

> spectrum disorder (PDD-NOS) and not the parent of one.

>

> I am a senior at Georgia State University studying

> psychology. I live in Atlanta (near the CDC and Emory)

> away from my family in Tyrone, Georgia. Living this

> far from Will has shown me how much I miss helping

> children just like him. I watched Will's discrete

> trial taining and applied behavioral analysis. I am

> now looking to go through training in DTT and ABA so

> that I may begin working with one or two children in

> the Atlanta (Emory/Buckhead/Highlands/Midtown and

> surrounding) area. I look forward to hearing from

> anyone who can recommend a good place or person to

> recieve training. I am overwhelmingly disappointed by

> the story of the 7 year old boy but sadly I am not

> suprised that so many people (including the media) are

> so ignorant on this subject, my heart desperately goes

> out to the child and his family. Everyday at school I

> hear another professor using very old definitions of

> autism thus each year teaching hundreds of bright open

> minded students wrong information about autism

> spectrum disorders.

>

> I have also watched reporter after reporter come into

> our home and constantly get the information wrong

> despite getting the right information from my mother

> and my family. At this point in my life I believe even

> some wrong information is good press. The more people

> who get involved, the more people who write letters to

> the editor, who stand up in Washington for their

> Child, and who continue sharing their voice leads only

> to the possibility that one more parent can join in

> the activism and one more member of congress can wake

> up. I believe that eventually everyone will know whose

> hands are dirty. I know parents, siblings,

> grandparents, and others who vowed to never be

> silenced. For the years my brother was silent and the

> harm that he has endured I know I will never be

> silent.

>

> I look forward to hearing more and more about the

> issues I could have missed and the battles you all are

> facing. My heart goes out to all of you!

> ~Hanna

>

>

>

> ____________________________________________________

> Start your day with - make it your home page

> http://www./r/hs

[Guest guest]

go to this site online and take the online test. before answering

each ?, click on it to get more details on HOW to answer it.

it will tally it at the end immendiately for you...whatever the

results are, print them even if not on pdd (or whatever) and sho wto

ped and others doing your sons eval.

it will help them to know where you see his strong suits and

weaknesses w/o having to recall each detail on a seconds notice.

our docs love seeing this one. hugs

http://www.childbrain.com/pddassess.html

> Hello all,

> I am the mother to a soon to be 3 y/o boy with language delays

and

> suspected to be on the spectrum. I am in the process of getting

him

> evaluated. I don't mean to bother those parents who have been

where

> I am (feeling down some days at the impending diagnosis of knowing

> what I already feel in my heart). My question is this : My husband

> was a late talker and had comprehension problems all the way

through

> school in which he had to be in " special ed " classes. Our son

loves

> going out family vacations, eats everything under the sun besides

> banana cream and yogurt(but loves pudding) . Yesterday we took him

> to Chucky Cheese which I thought would be the ultimate test. He

> LOVED it. He even followed one kid around in the big play maze

> thingy. He doesnt mind being touched by strangers, doesnt mind

> sleeping at different places( I was in the hospital 6 weeks ago

> having my daughter and he was fine even slept at his sitters house

> with no tears) I have these ideas in my mind because of his

> therapist. In his initial meeting with his speech therapist she

> thought he was sweet and engaged then she started asking us about

> his eating habits etc etc. He knows that peepee means the he is to

> sit on the potty and go. Sorry to be blabbing so much but I feel

> soooo very alone. I have so much hope for him yet I am so afraid

He

> loves the outside world but his speech therapist has come some of

> her own conclusions even though I have asked his teachers at

daycare

> how he plays (very well and even calls some kids by their names).

> She has all of sudden started pushing all day in the school

system.

> His favorite words right now are NO and the dreaded mine. I know

BCW

> is supposed to help me but even though I know he needs help and

that

> is why we have gotten him help and he has met all his goals his

> speech therapist told me " he will never catch up even though he is

> gaining ground. I found it shocking that she has so much

> inconsistency in saying he is overstimulated by the kids one week

> and then they come running in to join the group in which he is

> mimicing all the words they say while teaching him. I have made my

> self sick losing sleep trying to distingush what is true pretend

> play <riding his stuffed simba like a house , pretending to read a

> book, pretending eat food off the pages then drawing us in by

> feeding it to us> . I am sorry this is so long but my heart is

> breaking he does little odd things from time to time but is loving

> and fun. I guess I didnt have a question but needed to vent and

not

> feel so alone.

> Thank You

[Guest guest]

Welcome to the group, Hanna. Let me say that you don't have to be a parent of a child with autism to be truly touched by this disorder. I am sure you saw as much first hand as we did (do). It doesn't matter if it is your child or your sibling, when they are struck with autism it is just as devastating.

Also, I am very proud of you for going into this profession. I have a brother at UGA who changed his major from English Lit. to Special Education teacher when we found out about Tyler. He was already a bit interested in it when he had to work with special needs children for one of his classes but when my son was diagnosed that was all that he needed to know that he wanted to work with children like him. He only has one more year at UGA unless he goes on to get his masters, which I hope he does.

I am also very proud of your Mom and all that she has done for the autism community. I know the adversity that I go through because I work at a pediatric office and am constantly getting scorned over my belief that mercury in the vaccines caused my son's autism. I couldn't imagine what your mother must have gone (and is still going) through. She has always been such a public figure on this issue.

I have gone on enough now. But again, welcome to the group. We are glad to have you.

Mother to Tyler-4-PDD/Autism and Haley-2-NT but a little spoiled and absolutely adored by her brother.

-- New to the group

Hello ALL!I am new to the group and am thankful that I was ableto join. I am the daughter of Lyn Redwood (presidentof Safeminds.org). I was ten when my little brotherWill was born, I am now 21 and he is 11. Daily I amreminded of how much potential Will had and yet I amso proud to see how very far he has come. He justbegan 6th grade at a Montessori school, and over thepast 3 years he has been achieving average and aboveaverage grades. I know my view is differentconsidering I am the sister of a child with an autismspectrum disorder (PDD-NOS) and not the parent of one.I am a senior at Georgia State University studyingpsychology. I live in Atlanta (near the CDC and Emory)away from my family in Tyrone, Georgia. Living thisfar from Will has shown me how much I miss helpingchildren just like him. I watched Will's discretetrial taining and applied behavioral analysis. I amnow looking to go through training in DTT and ABA sothat I may begin working with one or two children inthe Atlanta (Emory/Buckhead/Highlands/Midtown andsurrounding) area. I look forward to hearing fromanyone who can recommend a good place or person torecieve training. I am overwhelmingly disappointed bythe story of the 7 year old boy but sadly I am notsuprised that so many people (including the media) areso ignorant on this subject, my heart desperately goesout to the child and his family. Everyday at school Ihear another professor using very old definitions ofautism thus each year teaching hundreds of bright openminded students wrong information about autismspectrum disorders.I have also watched reporter after reporter come intoour home and constantly get the information wrongdespite getting the right information from my motherand my family. At this point in my life I believe evensome wrong information is good press. The more peoplewho get involved, the more people who write letters tothe editor, who stand up in Washington for theirChild, and who continue sharing their voice leads onlyto the possibility that one more parent can join inthe activism and one more member of congress can wakeup. I believe that eventually everyone will know whosehands are dirty. I know parents, siblings,grandparents, and others who vowed to never besilenced. For the years my brother was silent and theharm that he has endured I know I will never besilent. I look forward to hearing more and more about theissues I could have missed and the battles you all arefacing. My heart goes out to all of you!~Hanna ____________________________________________________Start your day with - make it your home page http://www./r/hs

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[Guest guest]

In a message dated 8/19/05 3:39:20 PM, dsmom1101@... writes:

<< I know BCW

is supposed to help me but even though I know he needs help and that

is why we have gotten him help and he has met all his goals his

speech therapist told me " he will never catch up even though he is

gaining ground. >>

Please talk to your service coordinator about this. Is the speech therapist

recommending an evaluation from another professional? She is not qualified to

make a diagnosis of an autism spectrum disorder nor is she able to predict his

future. Your service coordinator can help you.

[Guest guest]

Hi ...welcome to the group. It is a relief to find out you are not

imagining things and there are other children who have a similar illness.

I know my son's infectious disease doctor tested him for cyclic

neutropenia (I believe they watch the white cells for a few week period

and see if it drops before the illness), hybernian fever, Hyper IgD and

several other tests on his immune system were conducted. All of the tests

were done by blood draw.

We have been struggling with this illness since Jarrod was 3 months old -

he is now 38 months and unfortunately at the moment there does not seem

to be an end in sight. The ID doc told us the symptoms usually resolve

around the onset of puberty...that is quite a ways away. We have had some

months with no fevers and other months where we've fevered 3 times. Each

episode is different.

Hope this helps!!

(SWFL)

Mother of Jarrod (3)

On Tue, 30 Aug 2005 10:12:22 -0500 " Garren " <ngarren@...>

writes:

Hello to everyone,

I am a new member, and certainly happy to see there is a name for this

syndrome and that people are working to help relieve the symptoms. My

daughter just turned 3 and has had fevers for the past 5 months (1 per

month). After thinking it was a bad case of 2 year molars coming in

(dentist said it could be), I gave up that theory this past week and the

docs (ped and infectious disease doc) said they believe she has .

They are telling me to treat with Tylenol (to reduce stomach irritation)

and take careful records on the timing. She has had a CBC blood test

with everything fine, except an elevated inflammation rate, and a urine

test that came through fine. My questions are1) What are your thoughts

on other monitoring/tests we should be doing? 2) I've read that

resolves itself abruptly over months and possibly years, but I noticed

there was someone with a 12 year old who still had this. Does anyone

have an estimated timeframe for this to end OR does it end?

Thanks much. Look forward to being a part of the group.

Garren

Stilwell, Kansas

Daughter 3

[Guest guest]

Thank you . Very helpful. I'm in research mode now and

find this group to be great. My best to all,

,mother of 3 yr old

> Hi ...welcome to the group. It is a relief to find out you

are not

> imagining things and there are other children who have a similar

illness.

>

> I know my son's infectious disease doctor tested him for cyclic

> neutropenia (I believe they watch the white cells for a few week

period

> and see if it drops before the illness), hybernian fever, Hyper

IgD and

> several other tests on his immune system were conducted. All of

the tests

> were done by blood draw.

>

> We have been struggling with this illness since Jarrod was 3

months old -

> he is now 38 months and unfortunately at the moment there does not

seem

> to be an end in sight. The ID doc told us the symptoms usually

resolve

> around the onset of puberty...that is quite a ways away. We have

had some

> months with no fevers and other months where we've fevered 3

times. Each

> episode is different.

>

> Hope this helps!!

>

> (SWFL)

> Mother of Jarrod (3)

>

>

[Guest guest]

Hi Rita,

This is a good group. It can have some heated discussions, but no one holds a

grudge. Welcome Mike

Hi -

I am new to the group and will just be " lurking " for awhile until I read some

and see some of the interesting and helpful ideas being passed around!

Rita (Oregon)

[Guest guest]

Atta girl Jen,

Keep on doing right! It's not easy in the face of opposition, but

your family's health is worth it.

[We are in Flowery Branch - almost neighbors] Our first four were

'minimally vaxed' to barely keep

them in school, but with #5 (who is now 16) he has _never_ been

vaccinated and is totally home schooled.

For high school, he is enrolled in the American School program. It is

cheaper than more home study

programs, and he will have an accredited diploma when he graduates in a

couple of years. Just my

opinion...leaving life important decisions up to children usually

results in childish decisions. After all,

they are children - YOUR children. Good luck with your little

darlin's. Sandi

Carver wrote:

> Hi, my name is Carver. I live in Marietta, GA. I have 2 young

> boys. One is 1 1/2 years old and my second is 4 mos. We have opted

> not to

> vaccinate, so both boys are currently not " up to date " . I am very

> eager to

> get more information and support for our family decision. My husband is

> behind me 100%. I am very blessed for that. We are considering

> homeschooling for the kindergarten, elementary years (however, it is up to

> the children). However, i know for middle and high school we will have to

> tackle the dreaded pressure of immunization. From what i understand i

> live

> in a very good city for getting by with written exemptions. We house the

> god " of chiropractor schools here in this city. Life Chiropractor:) So,

> many people do not vaccinate.

>

> The ped. that we used with my first son was (at first) supportive in our

> decision NOT to vaccinate however, later she became more negative and

> pushy.

> We got referrals from many people (Bradley teacher, midwife, Le Leche

> League, etc) of a gentleman in a few towns away that was very

> supportive.

> Praise God!! He is a wonderful man,....he schedules 30 min visits

> with all

> children and he actually sticks to them. He sits down....lets you ask as

> many questions that you want...etc. Wonderful. His wife is a

> chiropractor.

> He does vaccinate at his office however, he had MANY who do not. I am

> lucky to find him.

>

> I feel sometimes that i do not know enough to have full blown debates with

> family and friends about our decision. I just know that we are doing the

> right thing. I have many friend that are not vaccinating and just as many

> that are. The ones that are vaccinating are REALLY upset and feel we are

> the WORST parents IN THE WORLD. I am hoping to get some good information

> and support on this group list. I really need to educate myself.

>

> Thanks,

> jen c

>

>

[Guest guest]

the WORST parents IN THE WORLD....here is what kills me...these people

get in an uproar about us not vaxing our kids and try to say we are

bad parents....when they are the ones INJECTING VIRUSES into their

kids bloodstreams....how did this logic come into play? I know the

majority of our population are stupid and easily persuaded....but how

can that simple little fact just be overlooked??

> Hi, my name is Carver. I live in Marietta, GA. I have 2 young

> boys. One is 1 1/2 years old and my second is 4 mos. We have opted

not to

> vaccinate, so both boys are currently not " up to date " . I am very

eager to

> get more information and support for our family decision. My husband is

> behind me 100%. I am very blessed for that. We are considering

> homeschooling for the kindergarten, elementary years (however, it is

up to

> the children). However, i know for middle and high school we will

have to

> tackle the dreaded pressure of immunization. From what i understand

i live

> in a very good city for getting by with written exemptions. We

house the

> god " of chiropractor schools here in this city. Life

Chiropractor:) So,

> many people do not vaccinate.

>

> The ped. that we used with my first son was (at first) supportive

in our

> decision NOT to vaccinate however, later she became more negative

and pushy.

> We got referrals from many people (Bradley teacher, midwife, Le Leche

> League, etc) of a gentleman in a few towns away that was very

supportive.

> Praise God!! He is a wonderful man,....he schedules 30 min visits

with all

> children and he actually sticks to them. He sits down....lets you

ask as

> many questions that you want...etc. Wonderful. His wife is a

chiropractor.

> He does vaccinate at his office however, he had MANY who do not. I am

> lucky to find him.

>

> I feel sometimes that i do not know enough to have full blown

debates with

> family and friends about our decision. I just know that we are

doing the

> right thing. I have many friend that are not vaccinating and just

as many

> that are. The ones that are vaccinating are REALLY upset and feel

we are

> the WORST parents IN THE WORLD. I am hoping to get some good

information

> and support on this group list. I really need to educate myself.

>

> Thanks,

> jen c

>

>