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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

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  • 6 months later...

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

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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)

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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)

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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)

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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)

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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)

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  • 3 weeks later...

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.

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  • 2 months later...

, 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,

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---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,

>

>

>

>

>

>

>

>

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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,

>

>

>

>

>

>

>

>

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  • 1 month later...
Guest guest

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

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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

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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

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Guest guest

> 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

>

>

>

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Guest guest

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/

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Guest guest

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/>

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

-unsubscribe@groups<mailto:-unsubscribe@groups>.

To search group archives go to:

/messages<PedP\

ID/messages>

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Guest guest

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/>

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

-unsubscribe@groups<mailto:-unsubscribe@groups>.

To search group archives go to:

/messages<PedP\

ID/messages>

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Guest guest

Kathleen,

Thanks for asking. has been better. We had a great winter and so

far this spring he has had a horrible sinus infection/double ear infection,

then last week he had pneumonia. We did get approved for the port and then

the immuno talked me out of it. We are starting home subQ next week. So

that should be interesting. My other two kids are doing well. Noah is just

being a typical 6 year old boy! Kayla is doing great, no seizures since Dec

19th and her school work is looking wonderful. I just found out I am

severely allergic to dust mites and have to go in for weekly allergy shots..

it never ends around here. Ugh, Oh well I guess it could have been worse.

Take care Kathleen. Are you still moving? Have you figured out where?

Amy

Re: Re: Update

>

> 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....

>

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Guest guest

Kathleen,

Thanks for asking. has been better. We had a great winter and so

far this spring he has had a horrible sinus infection/double ear infection,

then last week he had pneumonia. We did get approved for the port and then

the immuno talked me out of it. We are starting home subQ next week. So

that should be interesting. My other two kids are doing well. Noah is just

being a typical 6 year old boy! Kayla is doing great, no seizures since Dec

19th and her school work is looking wonderful. I just found out I am

severely allergic to dust mites and have to go in for weekly allergy shots..

it never ends around here. Ugh, Oh well I guess it could have been worse.

Take care Kathleen. Are you still moving? Have you figured out where?

Amy

Re: Re: Update

>

> 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....

>

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Guest guest

In a message dated 4/6/2005 4:34:09 PM Pacific Standard Time, kkrt1@...

writes:

he has not been really sick

like he used to be....

Kathleen,

Thanks for sharing your excellent news!!

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), asthma, Carnitine deficiency, GERD

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  • 3 months later...
Guest guest

-

I just wanted to mention, two similarities with your son. First though, let

me just say you are a step ahead in the fact that he was even willing to

give the job a try! Kudos to him for that.

The similarities - the eye blinking - My son started this back in second

grade. He was diagnosed shortly thereafter with Tourette's (not just because

of

the eye blinking, there were other symptoms and history dating back). He

described the eye blinking as just something that he " felt " he had to do. The

other similarity was his picking up on your frustrated " tone. " This has been

a major, consistent problem with my son through the years. Unless you speak

even-toned or monotone in his presence he interprets any rise in voice as

being " mad or ticked off " at him. I must admit, this is a little better since

he has been on the Zoloft, but it's still present from time to time. For

instance, a while back if he were in another room and I had to raise my voice

just to call him, he interpreted this rise in my voice as being mad at him. If

I'm calling my husband who might be out in the yard and raising my voice to

get his attention, he (my son) automatically assumes I'm " mad " at dad and

causes discomfort for my son.

Just wanted to share.

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Guest guest

He then asked if he was just a

pain to have around.

Aww, , breaks my heart too!

Well, he knows that his OCD is a " pain " , it's just hard to separate

it from himself; and then they (and us parents) get frustrated as

they listen to/follow OCD's instructions.

I used to joke with sometimes back when he would get

frustrated and hit himself in the head due to OCD, " here, let ME do

that! I'm fed up with OCD too! " and smile/laugh, and we'd wish it

were that simple to knock it all away!

(Although I would also tell him that I wasn't going to allow that,

his hitting himself, or pinching, and would hold lightly his arm

when I had to.)

Does he have a certain time limit to get the mowing done? Maybe

saying, " no problem, you have til bedtime tonite; if it's not done,

come back tomorrow " or something might help. Tell him that's what I

do, mow all the yard (front, back, sides, roadside...) and then walk

around to see what foot-tall weed(s) I missed!

went thru a period of some facial things. I wondered if it

was OCD or tics beginning. It ended though.

Well, give your fella a hug from me!

> Hi. We finally will get to see our doctor in 3 more weeks. I

sure

> wish we could see him right away. Our son didn't get any better

> being away from school as we had hoped. At least it's been one

less

> thing to deal with though. Over the last week he has accually got

> worse.

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  • 2 months later...

I

think your plan is sound. Sounds like the Indian doc can’t really take

good care of you anyway. Try the programs they have & see how it goes.

De

Update

Hey

hope everyone is well. I have been doing some thinking.So I guess I wanted to

use you all as a sounding board for my plans. As most of you may know I dont

have any insurance. That tends to make it a lil bit diffucult to find a Dr that

wants to give his services away free of charge. Cant even say I blame them. I

was sopposed to go see my dr tomorrow for my every three month check up. My dr

is at an Indian clinic in okla. Because I live in Texas there are a lot of

things they dont do. So I am changing Drs. I spoke to the University of Tex at

Tyler, they have programs that will allow me to be seen. I am having alot more

problems and there is nothing my current dr can really do until he runs some

tests. The tests happen to be in the group of things they cant do do unless Im

an Okla resident. I am not very fond of the limbo game..lol. At least not when

my health is involved. Well I guess that is the general idea of my plans. Im

tired of being sick. As Im sure many of you can understand.

love hugs

and prayers

d

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