question

[Guest guest]

In a message dated 12/4/2006 4:22:44 P.M. Mountain Standard Time,

djcamp1@... writes:

to wait till summer is better.. more

recovery time. but depends on insurance n things i guess..are you

approved already? can you take leave from work, maybe 4 weeks at

least,,

I have completed all of the exercise, doctor, nutritionist for six months

requirements and according to the surgeon, it should be approved with not

problem. According to the insurance specifications, I just need to have the

surgery within 12 months of completing their program. I guess I am going to

email

the surgeon's office and tell them that I will wait until school is out. I

don't feel right leaving the kids with a substitute for long periods

especially since they will be getting ready for state testing beginning in

February.

Thank you everyone for your advise.

Joan

[Guest guest]

I was told that two weeks would be good. This is not only to recover from

surgery, but to get use to the diet.

Jackie

Bdrcolliez@... wrote:

I am trying to decide when to schedule my surgery. I am a 5th grade

teacher. The last day before Christmas will be Friday, 12/22. I am sure that

they

will not do surgery on Monday (Christmas) so Tuesday 12/26 would probably be

the earliest I could have it done. My first day back at work will be 1/4 and

I would only have a week between surgery and going back to work. Is this a

good idea? My other option will be to wait until school is out and have it

done the first part of June. That way I would have a couple of months before

I went back to work. I have waited this long, I guess a few more months

won't make much of a difference.

Joan

[Guest guest]

---my personal opion is you do not have a easy job, to get surgury

done at christmas n to go back after christmas vacation is not to

much of a possibliity... to wait till summer is better.. more

recovery time. but depends on insurance n things i guess..are you

approved already? can you take leave from work, maybe 4 weeks at

least,, good luck donna In GastricBypass-LOSERS , J

Tro wrote:

>

> I was told that two weeks would be good. This is not only to

recover from surgery, but to get use to the diet.

>

> Jackie

>

> Bdrcolliez@... wrote:

>

> I am trying to decide when to schedule my surgery. I am a 5th grade

> teacher. The last day before Christmas will be Friday, 12/22. I am

sure that they

> will not do surgery on Monday (Christmas) so Tuesday 12/26 would

probably be

> the earliest I could have it done. My first day back at work will

be 1/4 and

> I would only have a week between surgery and going back to work. Is

this a

> good idea? My other option will be to wait until school is out and

have it

> done the first part of June. That way I would have a couple of

months before

> I went back to work. I have waited this long, I guess a few more

months

> won't make much of a difference.

>

> Joan

>

>

[Guest guest]

Hi, I went back to work after 10 days and I was a nurse working in

urgent care and I was fine. Hope this helps you out a little. in

CA

[Guest guest]

We didn't but many many families did and most (but not all) do not have

another child with CHARGE. You might want to speak to a geneticist familiar

with CHARGE or to Meg, our resident specialist about genetic counseling.

Best of luck,

Lis

Kennedy's Mom (www.chargesyndrome.info)

>

> Hi all,

> My wife and I have been wondering if any of you have had other

> children after you had your charge child. If so, did any of you have

> another charger baby?

> We have always wanted to have 3 childrren but after this we are very

> afraid (no matter what the statistics say) that we will have another

> baby with this disorder. We do not want to have a child that will

> have to endure what our little boy is having to go through.

> We just do not think that it would be fair to the child. If any of

> you have had multiple babies with charge please let me know what you

> think.

>

> Thank you all,

> and

>

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

Its such a difficult decision for you both to make, I dont believe anyone

can reassure you of the chance of another charge baby, even though the odds

are slim, I think 1%, but not certain, Amelie was our fourth baby and her

three siblings are fit and well.

hope you get some answers to help you decide.

love Lesley

>

> We didn't but many many families did and most (but not all) do not have

> another child with CHARGE. You might want to speak to a geneticist

> familiar

> with CHARGE or to Meg, our resident specialist about genetic counseling.

> Best of luck,

> Lis

> Kennedy's Mom (www.chargesyndrome.info)

>

> On 5/10/07, emorydawg1 emorydawg@... >

> wrote:

> >

> > Hi all,

> > My wife and I have been wondering if any of you have had other

> > children after you had your charge child. If so, did any of you have

> > another charger baby?

> > We have always wanted to have 3 childrren but after this we are very

> > afraid (no matter what the statistics say) that we will have another

> > baby with this disorder. We do not want to have a child that will

> > have to endure what our little boy is having to go through.

> > We just do not think that it would be fair to the child. If any of

> > you have had multiple babies with charge please let me know what you

> > think.

> >

> > Thank you all,

> > and

> >

> >

> >

>

> --

> " It is far better to grasp the universe as it really is than to persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>

[Guest guest]

-

I too wanted to tell you, your words were very moving. Hopefully Michele

will let

me borrow her sentiments to convey mine as well.

" What a beautiful response! You expressed so many thoughts and feelings that

many of us try hard to deny or forget. Thanks. " Michele W.

in Ma.

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi

We have a younger child without CHARGE and in the UK I know of many families

where an older sibling has CHARGE and subsequent children do not. It has

happened but is very, very rare. The one family in the UK I know where there

are more than one (2 out of 3) child with CHARGE the mother has the genetic

mutation.

Simon

(Vice Chair of the CHARGE Family Support Group)

Father to 6 (7 in 15 days) CHARGE and Elly 4 (5 in July)

[Guest guest]

wow julie, well said... my story is a bit different. Silas has been

surprising our family (ME) since i learned i was pregnant again.

i became pregnant with Silas so fast after Chrystine's birth (she was about

8 wks. old)

.. i don't even remember alot of the pregnancy for Silas. i know i spent a

great deal sleeping in a hospital recliner with my huge belly exhausting me and

a back ache from you know where. i don't really know how i managed now in

hindsight. chrystine was hospitalized probably 20 times in that 9 months. when i

saw silas, i too examined his ears and was told that he was deaf at birth

having failed 4 hearing tests. my pediatrician and i decided to do a couple

extra tests on his kidneys and the ultrasound showed hydronephrosis and his

VCUG

proved he also had vesicoureteral reflux. i was devestated. at 2 months old,

he passed his hearing tests.. and i could definitely tell he was " healthy "

despite having the reflux in his kidneys. he and Chrystine are 11 months and 1

day apart. he's about 4 inches longer and at least 5 pounds heavier. i call

them my twins born a year apart, and because of these 2 babies and my busy

dancing 4 year old, everyone i meet must stop me and remind me that i have my

hands full! i broke my wrist last december and i reminded everyone that No, I

have my hand full. of course i was terrified when i found out i was pregnant

but i processed my feelings and accepted them. i tire of the auto response

given when someone is expecting a child, " we don't care what it is as long as

its healthy. " i suppose people really don't know how offensive that statement

can be considering that chrystine with charge syndrome and silas with his

vesicoureteral reflux happen to be wonderful blessings despite their health. i

know that charge can have a second occurence... but, children of " good health "

and with charge are gifts from above. it's a very personal decision to have

another child unless of course you get the news and it's a great surprise as

i exprienced. i felt the decision was made for me.... a destiny perhaps. both

my daughters were planned pregnancies and believe me with the whirlwind of

chrystine's birth, i didn't really need any more exciting news to give friends

and family. thankfully, i have my son, Silas. a big ole baby boy with huge

dark eyes and an insatiable appetite for a bottle and my attention.

chrystal

mom to Arleigh-4

Chrystine-18 months CHaRGE + chronic kidney disease

and Silas-almost 8 months

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi and ,

What a tough question. I am afraid no one will be able to give you

enough information to make such a deeply personal decision. Sometimes

I wish had a crystal ball to know more about the future - and

sometimes I am very thankful that we can't know more than today.

I'd like to share my thoughts and our information with you - but I

know it will still be inadequate for your decision making.

We have Adele who is almost 3 w/ CHARGE and recently had Margo, who

does not have CHARGE. Lots of people would automatically call Margo's

typical health a blessing - and it is - but saying that makes me feel

like anything other than typical is not a blessing. Adele having

CHARGE is certainly not what I wanted for her nor for our family but

I cannot say she is not a gift from God, a blessing.

That said, I did not want to have a second child with CHARGE (or any

other issue). At the Miami conference, we learned a lot about the

CHARGE gene mutation and also heard about a few families with a 2nd

occurrence. In some ways, it was comforting to know the odds of

reoccurrence but having already been the tiny number of a statistic -

like all of us in this group - it almost wasn't.

What has been comforting to me, is meeting families and seeing many

other situations in the broad special needs world. In situations I'm

sure outside people would consider " worst case scenario, " I have seen

amazing people who were rising to the occasion. I have also seen

people with CHARGE, and other children, who seem pretty ok with not

being typical. These families and individuals seem to live their

lives with hope for the future, just like people without special

needs. I hoped that if we had a 2nd child and if the child had CHARGE

(or anything else), that we too could rise to the occasion.

Now, before I make myself sound too noble. I have had several days

where the above statements felt like total baloney. One of those was

about a month before Margo was born. I read on the Listserv of a

child who was born to a family with CHARGE and it was their 2nd

occurrence. I felt very, very afraid and a little naive.

During Margo's delivery, there were some issues with her heart-rate

that were very similar to Adele's birth. I had a sinking feeling.

When she arrived, I couldn't turn her around fast enough to look at

her ears. To me, they looked wrong. My heart sank again. I don't even

like to remember that feeling. Even though I kept a brave face, it

would be an understatement to say I did not feel that I could rise to

the occasion.

Thankfully, we were lucky, and I like that word even less

than " blessed. " Margo's heart and ears are totally fine. I am so glad

we have her and am extremely grateful, but it is bittersweet. What

did we do to deserve her and why did Adele not have the same

experience? I have not resolved who is blessed and who is lucky or

what else there is to consider. For myself, as a Christian, I try to

remember God is in control and that he is the giver of strength. I

have witnessed many people who have been given unbelievable strength

and I can only hope to be blessed with the same. But sometimes, I

think he gives it at the last possible moment.

I know this is long and would probably be more meaningful if it came

from the family who had the second occurrence of CHARGE. I don't envy

your decision process but I do think you will be okay no matter what

because even though I don't personaly know you, you have already

proven to be people of great strength. Otherwise, you would not have

been given your first child.

All my best,

--

mom to Adele (almost 3) and Margo (7 1/2 months)

www.brandrup.com

username: baby

password: sugar

>

> Hi all,

> My wife and I have been wondering if any of you have had other

> children after you had your charge child. If so, did any of you

have

> another charger baby?

> We have always wanted to have 3 childrren but after this we are

very

> afraid (no matter what the statistics say) that we will have another

> baby with this disorder. We do not want to have a child that will

> have to endure what our little boy is having to go through.

> We just do not think that it would be fair to the child. If any of

> you have had multiple babies with charge please let me know what

you

> think.

>

> Thank you all,

> and

>

[Guest guest]

My Mums Dad told her to get an abortion when she got pregnant with my

younger sister lol, shes pretty normal lol

[Guest guest]

-

What a beautiful response! You expressed so many thoughts and feelings that

many of us try hard to deny or forget. Thanks.

Michele W

Aubrie's mom

[Guest guest]

Our now 4 year old has CHARGE and we always wanted to have more than one child.

When she was 2 we got pregnant which was quite a surprise. Mostly b/c we still

had a long way to go with before we thought we would be ready for Baby

#2. Anyways, b/c the risk of having another CHARGE baby was 1-3 % my OB/Gyn

suggested that we take extra precautions. Now mind you this was only b/c the

chance was not 0%. So we did the 3D ultrasounds and a fetal echo. We did not do

an amnio or CVS (or whatever that is called) to check to see if the baby had the

mutation. We opted against it b/c our oldest does not have the mutation and we

figured unless we would get a 100% answer then it wasn't worth the risk. Now I

say that we did the extra ultrasounds and the fetal echo but that was only to

see if this baby would have anything worse then what had b/c her

" quirks " would not show up on these tests. So we figured if we say anything then

we would be able to prepare in whatever way we needed to. Our little Caroline

was born Feb. 22 of last year and she does not have CHARGE. I will also say that

I would like to have more children regardless of the 1-3% risk. I would think

that you would be fine but there is obviously the risk albeit small so who

knows. But you could do like us and have the extra tests so that you can be

prepared.

Question

Hi all,

My wife and I have been wondering if any of you have had other

children after you had your charge child. If so, did any of you have

another charger baby?

We have always wanted to have 3 childrren but after this we are very

afraid (no matter what the statistics say) that we will have another

baby with this disorder. We do not want to have a child that will

have to endure what our little boy is having to go through.

We just do not think that it would be fair to the child. If any of

you have had multiple babies with charge please let me know what you

think.

Thank you all,

and

[Guest guest]

chyrs wonderfuly said no mother with kids like urs could of said it better i

dotn think hugz to chrystine from me and ofcourse to you to love ellen

>

> wow julie, well said... my story is a bit different. Silas has been

> surprising our family (ME) since i learned i was pregnant again.

> i became pregnant with Silas so fast after Chrystine's birth (she was

> about

> 8 wks. old)

> . i don't even remember alot of the pregnancy for Silas. i know i spent a

> great deal sleeping in a hospital recliner with my huge belly exhausting

> me and

> a back ache from you know where. i don't really know how i managed now in

> hindsight. chrystine was hospitalized probably 20 times in that 9 months.

> when i

> saw silas, i too examined his ears and was told that he was deaf at birth

> having failed 4 hearing tests. my pediatrician and i decided to do a

> couple

> extra tests on his kidneys and the ultrasound showed hydronephrosis and

> his VCUG

> proved he also had vesicoureteral reflux. i was devestated. at 2 months

> old,

> he passed his hearing tests.. and i could definitely tell he was " healthy "

>

> despite having the reflux in his kidneys. he and Chrystine are 11 months

> and 1

> day apart. he's about 4 inches longer and at least 5 pounds heavier. i

> call

> them my twins born a year apart, and because of these 2 babies and my busy

>

> dancing 4 year old, everyone i meet must stop me and remind me that i have

> my

> hands full! i broke my wrist last december and i reminded everyone that

> No, I

> have my hand full. of course i was terrified when i found out i was

> pregnant

> but i processed my feelings and accepted them. i tire of the auto response

>

> given when someone is expecting a child, " we don't care what it is as long

> as

> its healthy. " i suppose people really don't know how offensive that

> statement

> can be considering that chrystine with charge syndrome and silas with his

> vesicoureteral reflux happen to be wonderful blessings despite their

> health. i

> know that charge can have a second occurence... but, children of " good

> health "

> and with charge are gifts from above. it's a very personal decision to

> have

> another child unless of course you get the news and it's a great surprise

> as

> i exprienced. i felt the decision was made for me.... a destiny perhaps.

> both

> my daughters were planned pregnancies and believe me with the whirlwind of

>

> chrystine's birth, i didn't really need any more exciting news to give

> friends

> and family. thankfully, i have my son, Silas. a big ole baby boy with huge

>

> dark eyes and an insatiable appetite for a bottle and my attention.

>

> chrystal

> mom to Arleigh-4

> Chrystine-18 months CHaRGE + chronic kidney disease

> and Silas-almost 8 months

>

> ************************************** See what's free at

> http://www.aol.com.

>

>

[Guest guest]

In a message dated 4/3/2008 6:46:16 P.M. Eastern Daylight Time,

dodgeturbo99@... writes:

So we discussed other meds. He ended giving me Endocet. But when I take it I

get so sleepy. I fall asleep in the middle of anything. So I called the doc

and told them what was going on. They had me cut down to 1/2 . You would

think after being on Vicodin all those years I would be able to take this pill.

But it is knocking me on my butt..

The Endocet is basically another brand name for Perocet (oxycodone) and the

Vicodin is hyrdrocodone....The oxycodone is stronger than the hydrocodone,

but as u take it more, I think u will build up a little tolerance to it, and it

won't make u as sleepy..

When I first started taking Percocet, I would only take a 1/4 of a pill,

then after awhile a half...Now I am able to take a whole one, but sometimes I

still take only a half if thats all I need and the pain is not that severe...

**************Planning your summer road trip? Check out AOL Travel Guides.

(http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)

[Guest guest]

>

> Hi guys,

>

> I went to my rheumy yesterday and we were discussing my Vicodin as

> doesn't seem to be helping anymore.

>

> So we discussed other meds. He ended giving me Endocet. But when

I take it I get so sleepy. I fall asleep in the middle of anything.

So I called the doc and told them what was going on. They had me

cut down to 1/2 . You would think after being on Vicodin all those

years I would be able to take this pill. But it is knocking me on my

butt..

>

> Have any of you used this med before? Endocet. The pharmacist

said it was stronger than the Vicodin. They said it may go away

after time. But I do not want to sleep all the time? Any suggestions?

>

>

> Thanks

> Lori H

>

>

> Is that med any relation to darvacet? Leanne

>

>

>

>

> ---------------------------------

> You rock. That's why Blockbuster's offering you one month of

Blockbuster Total Access, No Cost.

>

>

[Guest guest]

Hey Lori

ENDOCET (Oxycodone and Acetaminophen Tablets, USP) is

a Schedule II

controlled substance.

and Vicodin is a combination of two pain relievers;

acetaminophen, commonly known by the trade name

Tylenol; and hydrocodone, a synthetic codeines.

I have taken both and after 24 hours i become

functionable and not so sleepy.

but then i don't sleep even with sleep meds.

Diane

--- me dodgeturbo99@...> wrote:

> Hi guys,

>

> I went to my rheumy yesterday and we were

> discussing my Vicodin as

> doesn't seem to be helping anymore.

>

> So we discussed other meds. He ended giving me

> Endocet. But when I take it I get so sleepy. I

> fall asleep in the middle of anything. So I called

> the doc and told them what was going on. They had

> me cut down to 1/2 . You would think after being

> on Vicodin all those years I would be able to take

> this pill. But it is knocking me on my butt..

>

> Have any of you used this med before? Endocet.

> The pharmacist said it was stronger than the

> Vicodin. They said it may go away after time. But

> I do not want to sleep all the time? Any

> suggestions?

>

>

> Thanks

> Lori H

>

>

>

>

>

>

>

> ---------------------------------

> You rock. That's why Blockbuster's offering you one

> month of Blockbuster Total Access, No Cost.

>

> [Non-text portions of this message have been

> removed]

>

>

> ------------------------------------

>

> 1. While it is wonderful to share our experiences

> with everyone on the list as to what treatments do

> and don't work for us, pls always check with your

> dr. Some treatments are dangerous when given along

> with other meds as well as to certain health

> conditions or just dangerous in general.

>

> 2. If you are in a difficult situation (doesn't

> matter what it is) pls don't be afraid to ask for

> help. It is the first step to trying to make that

> situation better.

>

> 3. To unsubscribe the e-mail is:

>

Fibromyalgia_Support_Group-unsubscribe

>

> 4. Also, it is not uncommon for more than one member

> to be feeling bad at the same time when it comes to

> flares and b/c of that potentially take something

> another member says the wrong way. And that

> includes the things that one member may find funny

> (even if it's laughing at fibro itself) even though

> we who deal with illness whether one such as fibro

> or multiple illnesses try to keep a sense of humor.

>

> 5. Pls let's be gentle with each other, and if you

> are having a bad day pls let us know so that we can

> do our best to offer our support.

>

> Have a nice day everyone.

>

[Guest guest]

Thanks for getting back to me? Some years back I used that and got vey addicted

to it.

But I have no choice at this time!

I took myself off of oxycontin . I had terrible withdrawl. They put me back

on vicoden but it did not help as my body wanted the stronger medicine. It

took about a momth to get it out of my body! But then I went back to my GP the

nurse gave me a big hug so it was worth it. But vicoden is not working for me

anymore. I have been proud of myself

Nd paramedic_di@...> wrote:

Hey Lori

ENDOCET (Oxycodone and Acetaminophen Tablets, USP) is

a Schedule II

controlled substance.

and Vicodin is a combination of two pain relievers;

acetaminophen, commonly known by the trade name

Tylenol; and hydrocodone, a synthetic codeines.

I have taken both and after 24 hours i become

functionable and not so sleepy.

but then i don't sleep even with sleep meds.

Diane

--- me dodgeturbo99@...> wrote:

> Hi guys,

>

> I went to my rheumy yesterday and we were

> discussing my Vicodin as

> doesn't seem to be helping anymore.

>

> So we discussed other meds. He ended giving me

> Endocet. But when I take it I get so sleepy. I

> fall asleep in the middle of anything. So I called

> the doc and told them what was going on. They had

> me cut down to 1/2 . You would think after being

> on Vicodin all those years I would be able to take

> this pill. But it is knocking me on my butt..

>

> Have any of you used this med before? Endocet.

> The pharmacist said it was stronger than the

> Vicodin. They said it may go away after time. But

> I do not want to sleep all the time? Any

> suggestions?

>

>

> Thanks

> Lori H

>

>

>

>

>

>

>

> ---------------------------------

> You rock. That's why Blockbuster's offering you one

> month of Blockbuster Total Access, No Cost.

>

> [Non-text portions of this message have been

> removed]

>

>

> ------------------------------------

>

> 1. While it is wonderful to share our experiences

> with everyone on the list as to what treatments do

> and don't work for us, pls always check with your

> dr. Some treatments are dangerous when given along

> with other meds as well as to certain health

> conditions or just dangerous in general.

>

> 2. If you are in a difficult situation (doesn't

> matter what it is) pls don't be afraid to ask for

> help. It is the first step to trying to make that

> situation better.

>

> 3. To unsubscribe the e-mail is:

>

Fibromyalgia_Support_Group-unsubscribe

>

> 4. Also, it is not uncommon for more than one member

> to be feeling bad at the same time when it comes to

> flares and b/c of that potentially take something

> another member says the wrong way. And that

> includes the things that one member may find funny

> (even if it's laughing at fibro itself) even though

> we who deal with illness whether one such as fibro

> or multiple illnesses try to keep a sense of humor.

>

> 5. Pls let's be gentle with each other, and if you

> are having a bad day pls let us know so that we can

> do our best to offer our support.

>

> Have a nice day everyone.

>

[Guest guest]

I do not think it is as he told me it was stronger than the Vicodin. Darvocet

does not work very well.

Lori (me)

weachy_01 weachy_01@...> wrote:

>

> Hi guys,

>

> I went to my rheumy yesterday and we were discussing my Vicodin as

> doesn't seem to be helping anymore.

>

> So we discussed other meds. He ended giving me Endocet. But when

I take it I get so sleepy. I fall asleep in the middle of anything.

So I called the doc and told them what was going on. They had me

cut down to 1/2 . You would think after being on Vicodin all those

years I would be able to take this pill. But it is knocking me on my

butt..

>

> Have any of you used this med before? Endocet. The pharmacist

said it was stronger than the Vicodin. They said it may go away

after time. But I do not want to sleep all the time? Any suggestions?

>

>

> Thanks

> Lori H

>

>

> Is that med any relation to darvacet? Leanne

>

>

>

>

> ---------------------------------

> You rock. That's why Blockbuster's offering you one month of

Blockbuster Total Access, No Cost.

>

>

[Guest guest]

Thanks I may try that! This is suppose to be stronger than Vicoden so i

think I am going thu some withdrawl from it. And I also quit taking it with my

other meds that seemed to help some but what you say makes sense.

Thanks

Lori H

In a message dated 4/3/2008 6:46:16 P.M. Eastern Daylight Time,

dodgeturbo99@... writes:

So we discussed other meds. He ended giving me Endocet. But when I take it I

get so sleepy. I fall asleep in the middle of anything. So I called the doc

and told them what was going on. They had me cut down to 1/2 . You would

think after being on Vicodin all those years I would be able to take this pill.

But it is knocking me on my butt..

The Endocet is basically another brand name for Perocet (oxycodone) and the

Vicodin is hyrdrocodone....The oxycodone is stronger than the hydrocodone,

but as u take it more, I think u will build up a little tolerance to it, and it

won't make u as sleepy..

When I first started taking Percocet, I would only take a 1/4 of a pill,

then after awhile a half...Now I am able to take a whole one, but sometimes I

still take only a half if thats all I need and the pain is not that severe...

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[Guest guest]

If anyone could anwer this question...

Are there any classes on how to do insurance billing for EMS (medicaid,

medicare, Private) and any other health systemS?? Books?

Any other information would be appreciated.

Thanks,

R Ruiz, BSEHS, LP, LVN

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