update

May 11, 2004

In a message dated 5/10/2004 10:24:47 PM Eastern Daylight Time,

pmork@... writes:

I think her negative

thoughts were true reflections of how bad she felt all the time.

Oh, I'm sure it was. Poor baby.

Janet

November 14, 2004

In a message dated 11/14/2004 12:36:47 AM Eastern Standard Time,

lmschatz@... writes:

I don't care anymore...He's my son and I want what is best

for him. THANKS for you SUPPORT!!!!!!!!!

You did the right thing! You did what was best!

Janet, mom to Brittany, CVID, age 13

November 15, 2004

In a message dated 11/13/2004 11:36:47 PM Central Standard Time,

lmschatz@... writes:

> they were miffed that I went

>

> over their heads. I don't care anymore...He's my son and I want what is

> best

>

> for him. THANKS for you SUPPORT!!!!!!!!!

>

When you're facing something that can cause permanent damage to the eye, you

would have to be insane to sit back and wait just because the docs didn't want

you going " over their heads " !!!!!!!! Too bad for them!!!!!!!!! Only you have

your son's best interests truly at heart, and you have the God-given Mommy

Radar to let you know when to " go over heads " or when to sit back and hope

someone else knows FOR SURE there won't be any permanent repercussions to

waiting.

GOOD FOR YOU. Sometimes you just gotta step on some toes.

If I was really truly concerned about burning a bridge, I might make an

excuse for going over someone's head like, " I know you said we could wait but my

husband (or MIL or mom or someone) was driving me insane with their worry, they

were not going to sleep or let me rest unless I got it looked at immediately,

they were just not taking my word for it!!!! " All said with a smile and

apologetic tilt and shrug. You certainly don't have to apologize for caring

about

your son's care, but then again, you catch more flies with honey than with

vinegar!!! No excuses necessary of course, if they simply dropped the ball.

(mom to , age 5-1/2, dairy intolerant-related GERD -- currently

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

other defs... and also to Kate, born 9/19/02, dairy intolerant)

November 15, 2004

That's exactly what I did when I talked to the ped. Warren did have a

herpes inf in his eye a couple of years ago and was told if left

untreated could cause blindness...They seemed to accept that and when we

saw Dr. F today, I again apologized for calling him and he said I was

right to be worried. Guess I'm not so dumb after all.

" I know you said we could wait but my

husband was driving me insane with their worry, they

were not going to sleep or let me rest unless I got it looked at

immediately,

they were just not taking my word for it!!!! " All said with a smile and

apologetic tilt and shrug. You certainly don't have to apologize for

caring about

your son's care, but then again, you catch more flies with honey than

with

vinegar!!! No excuses necessary of course, if they simply dropped the

ball.

(mom to , age 5-1/2, dairy intolerant-related GERD --

currently

has polysaccharide antibody def, previously had transient IgG, IgA,

t-cell &

other defs... and also to Kate, born 9/19/02, dairy intolerant)

November 15, 2004

That's exactly what I did when I talked to the ped. Warren did have a

herpes inf in his eye a couple of years ago and was told if left

untreated could cause blindness...They seemed to accept that and when we

saw Dr. F today, I again apologized for calling him and he said I was

right to be worried. Guess I'm not so dumb after all.

" I know you said we could wait but my

husband was driving me insane with their worry, they

were not going to sleep or let me rest unless I got it looked at

immediately,

they were just not taking my word for it!!!! " All said with a smile and

apologetic tilt and shrug. You certainly don't have to apologize for

caring about

your son's care, but then again, you catch more flies with honey than

with

vinegar!!! No excuses necessary of course, if they simply dropped the

ball.

(mom to , age 5-1/2, dairy intolerant-related GERD --

currently

has polysaccharide antibody def, previously had transient IgG, IgA,

t-cell &

other defs... and also to Kate, born 9/19/02, dairy intolerant)

November 15, 2004

In a message dated 11/15/2004 4:11:29 PM Central Standard Time,

lmschatz@... writes:

> Guess I'm not so dumb after all.

>

Well, WE knew that, but sometimes I gotta wonder if some docs out there think

anybody who gave birth automatically lost IQ points.

(mom to , age 5-1/2, dairy intolerant-related GERD -- currently

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

other defs... and also to Kate, born 9/19/02, dairy intolerant)

November 15, 2004

In a message dated 11/15/2004 4:11:29 PM Central Standard Time,

lmschatz@... writes:

> Guess I'm not so dumb after all.

>

Well, WE knew that, but sometimes I gotta wonder if some docs out there think

anybody who gave birth automatically lost IQ points.

(mom to , age 5-1/2, dairy intolerant-related GERD -- currently

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

other defs... and also to Kate, born 9/19/02, dairy intolerant)

December 1, 2004

I heard a minute or two of Neil Boortz today and he was not very sensitive to Asperger's -- and you might imagine.

C

December 1, 2004

I am not defending Neal but remember it is strictly his opinion. I have seen lots of posts about people upset with him over the last year and I understand. I do believe he says some of the things he says simply for the shock value.

February 9, 2005

, Be careful with the insurance company. In our two hospitalization

experiences, we had to be in close contact with them to be sure she was

approved to stay the correct number of days. Our hospital was very

expensive, as in $800 a day or so....so I'd just advise you to keep close

tabs on the insurance situation. We had no social worker to do it; we had to

do it ourselves.

maralee

update

I wanted to thank everyone for their responses when I wrote about

. Things finally came to a head on Mon., the school called

mental health services because they were concerned about his

behaviors. They in turn called me, telling me he needed to be

evaluated. Well duh!!! That's what we've been trying to do for months

now, but couldnt get him an appointment with the psychiatrist. We

took him to a psychiatric hospital about an hour away, and they

admitted him. It was very hard to leave Mike there, but I knew this

was the best thing for him. My husband was against it, blaming

himself for not spending enough time with Mike, he's had a hard time

dealing with this. They said Mike would be in for 7-14 days, and I

was on the phone all day yesterday with differant agencies calling to

say they would help in any way they could. Where were they before

this happened?? If they would have helped before, maybe it wouldnt

have come to this. Now the insurance agency called and said Mike

doesnt meet their " qualifications " to be in the hospital and were

talking about releasing him. I called the social worker, and he said

the psychiatrist would prob. override the decision, their trying him

out on meds and want to keep an eye on him. The social worker was

also upset that the insurance co. even bothered us, he said they

should be contacting him. So as of right now, I don't know what the

hecks going on, we're going to see Mike tonight, hopefully they can

let us know something. I'm so tired of getting the run around about

this. All I want is for my son to feel better about himself so he can

come home and not worry about him being discharged and going back to

square one. Thanks again,

February 9, 2005

---Does the hospital let you know when the insurance won't pay

anymore? I don't want to have the hospital keep Mike, not say

anything, and then get zapped with a bill.

In Autism and Aspergers Treatment , " Maralee " <mparker72@w...>

wrote:

> , Be careful with the insurance company. In our two

hospitalization

> experiences, we had to be in close contact with them to be sure she

was

> approved to stay the correct number of days. Our hospital was very

> expensive, as in $800 a day or so....so I'd just advise you to keep

close

> tabs on the insurance situation. We had no social worker to do it;

we had to

> do it ourselves.

> maralee

>

> update

>

> I wanted to thank everyone for their responses when I wrote about

> . Things finally came to a head on Mon., the school called

> mental health services because they were concerned about his

> behaviors. They in turn called me, telling me he needed to be

> evaluated. Well duh!!! That's what we've been trying to do for

months

> now, but couldnt get him an appointment with the psychiatrist. We

> took him to a psychiatric hospital about an hour away, and they

> admitted him. It was very hard to leave Mike there, but I knew this

> was the best thing for him. My husband was against it, blaming

> himself for not spending enough time with Mike, he's had a hard

time

> dealing with this. They said Mike would be in for 7-14 days, and I

> was on the phone all day yesterday with differant agencies calling

to

> say they would help in any way they could. Where were they before

> this happened?? If they would have helped before, maybe it wouldnt

> have come to this. Now the insurance agency called and said Mike

> doesnt meet their " qualifications " to be in the hospital and were

> talking about releasing him. I called the social worker, and he

said

> the psychiatrist would prob. override the decision, their trying

him

> out on meds and want to keep an eye on him. The social worker was

> also upset that the insurance co. even bothered us, he said they

> should be contacting him. So as of right now, I don't know what the

> hecks going on, we're going to see Mike tonight, hopefully they can

> let us know something. I'm so tired of getting the run around about

> this. All I want is for my son to feel better about himself so he

can

> come home and not worry about him being discharged and going back

to

> square one. Thanks again,

>

February 10, 2005

Yes, they usually do. But I'd stay on top of it myself if I were you. Maybe

you could ask the social worker at the hospital what the process is...our dr

tells us " she was preapproved for 3 days " or whatever. Then they have to go

back and check again after that time to see if it can be lengthened if need

be. They are VERY structured about it. How's it going...?

maralee

update

>

> I wanted to thank everyone for their responses when I wrote about

> . Things finally came to a head on Mon., the school called

> mental health services because they were concerned about his

> behaviors. They in turn called me, telling me he needed to be

> evaluated. Well duh!!! That's what we've been trying to do for

months

> now, but couldnt get him an appointment with the psychiatrist. We

> took him to a psychiatric hospital about an hour away, and they

> admitted him. It was very hard to leave Mike there, but I knew this

> was the best thing for him. My husband was against it, blaming

> himself for not spending enough time with Mike, he's had a hard

time

> dealing with this. They said Mike would be in for 7-14 days, and I

> was on the phone all day yesterday with differant agencies calling

to

> say they would help in any way they could. Where were they before

> this happened?? If they would have helped before, maybe it wouldnt

> have come to this. Now the insurance agency called and said Mike

> doesnt meet their " qualifications " to be in the hospital and were

> talking about releasing him. I called the social worker, and he

said

> the psychiatrist would prob. override the decision, their trying

him

> out on meds and want to keep an eye on him. The social worker was

> also upset that the insurance co. even bothered us, he said they

> should be contacting him. So as of right now, I don't know what the

> hecks going on, we're going to see Mike tonight, hopefully they can

> let us know something. I'm so tired of getting the run around about

> this. All I want is for my son to feel better about himself so he

can

> come home and not worry about him being discharged and going back

to

> square one. Thanks again,

>

April 6, 2005

Kathleen,

I am glad to hear that Conan is doing well...I am so glad that life has

improved for Conan - and I hope that only continues!

Best wishes and lots of hugs

Stefani and Will

April 7, 2005

In a message dated 4/6/2005 7:34:09 P.M. Eastern Daylight Time,

kkrt1@... writes:

our quality of life has greatly

improved..90%

That is great news! That's a happy update. =)

Janet, Mom to Brittany, CVID, age 14

April 7, 2005

In a message dated 4/6/2005 7:34:09 P.M. Eastern Daylight Time,

kkrt1@... writes:

our quality of life has greatly

improved..90%

That is great news! That's a happy update. =)

Janet, Mom to Brittany, CVID, age 14

April 7, 2005

> Kathleen,

> I am glad to hear that Conan is doing well...I am so glad that

life has

> improved for Conan - and I hope that only continues!

> Best wishes and lots of hugs

> Stefani and Will

>

April 7, 2005

Kathleen,

I am thrilled that Conan has come as far as he has in these 6 months! I

hope he continues with his progress. Is he still able to tolerate all foods

okay? Been thinking of you guys.

Amy,

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

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

flovent, xopenex, albuterol and claritin. Allergic to latex.. among other

things. Visit Nick's Caringbridge site at

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

April 7, 2005

Thanks so much, we have had little things, a lot of allergies still, but you

know what some days are great, and I enjoy him.... and he enjoys me... I feel

that is a huge improvemnet.. food is an issue, as well as GI stuff, and now the

damn sun gives him a rash... but He is happy, and laughs.. I hadnt had one

picture of him smiling since birth until recently... I feel blessed at this

point... I know there might be some downs... that is ok. cause I know what can

be..... I have kept him isolated until a month ago, no going to stores, play

dates, etc... and of course now he has a chronic cold..... but that is better

than the constant screaming....... OK enough about me, how are you guys doing?

are you going back to sub Q? did you get approved for the port? how are you

doing?? and the rest of your kids....

Re: Re: Update

Kathleen,

I am thrilled that Conan has come as far as he has in these 6 months! I

hope he continues with his progress. Is he still able to tolerate all foods

okay? Been thinking of you guys.

Amy,

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

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

flovent, xopenex, albuterol and claritin. Allergic to latex.. among other

things. Visit Nick's Caringbridge site at

http://www3.caringbridge.org/ne/nicholasb/<http://www3.caringbridge.org/ne/nicho\

lasb/>

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April 7, 2005