Overwhelmed by the situation- Esophageal manomatry

[Guest guest]

Today it's 11 days my baby is fevered, and I'm quite down.

I feel quite lost as what way to follow. I've been asking, searching,

reading and studying plenty of material as regards CHARGE, but when the

moment comes that I talk to physicians, they tend to sort of look down on

the data I offer them. I sometimes feel they lack logic for collecting

factual information and making decissions.

The OTs and the language pathologist (phonoaudiologist?) are extremely nice

and open minded, always looking forward to learning and helping na;

they are the exception.

I wonder how you managed your relationships with your children's doctors.

I'm trying to find one eager to learn and investigate, since I need to go

back to my job again. Most of the time I'm surfing the internet, finding and

receiving wonderful info... that na's doctors don't pay much attention

to. I feel they need a secretary to help them file the data, etc., and

that's my role now, but I'd love to sit down and just be a loving mother,

not running against time to find out solutions.

The other question I have is if you had your chargers undergo an esophageal

manomatry, before a Nissen surgery is performed. I've read about it, but,

again, doctors haven't even mention it.

Sorry for this " blue " e-mail; I'm quite overwhelmed these days. Learning to

relax and be polite when I ask for a more active attention is very difficult

for me at this moment. Doctors are at a point that feel too demanded, and my

husband and me are exhausted. My psychologist helps me a bit; maybe I need

an electroshock therapy to calm down

I hope all of our children get better soon.

Thank you all,

Vanesa, mom to Guille (4) and na (charger, 5-month-old)

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

* " El caos es un orden por descifrar " José Saramago.*

[Guest guest]

Many a day I feel like you describe, all I can say which may not comfort you

is, things do get better !!! although at times when I have been told that

here on the listserv, I have found it hard to believe, but today I had a

wonderful day and it makes up for all the miserable ones.

your day or days will come and all your blues will be behind you, just keep

going your doing a fantastic job, in a very stressful weary situation.

Hugs and loves to you all Les x

>

> Today it's 11 days my baby is fevered, and I'm quite down.

>

> I feel quite lost as what way to follow. I've been asking, searching,

> reading and studying plenty of material as regards CHARGE, but when the

> moment comes that I talk to physicians, they tend to sort of look down on

> the data I offer them. I sometimes feel they lack logic for collecting

> factual information and making decissions.

>

> The OTs and the language pathologist (phonoaudiologist?) are extremely

> nice

> and open minded, always looking forward to learning and helping na;

> they are the exception.

>

> I wonder how you managed your relationships with your children's doctors.

> I'm trying to find one eager to learn and investigate, since I need to go

> back to my job again. Most of the time I'm surfing the internet, finding

> and

> receiving wonderful info... that na's doctors don't pay much

> attention

> to. I feel they need a secretary to help them file the data, etc., and

> that's my role now, but I'd love to sit down and just be a loving mother,

> not running against time to find out solutions.

>

> The other question I have is if you had your chargers undergo an

> esophageal

> manomatry, before a Nissen surgery is performed. I've read about it, but,

> again, doctors haven't even mention it.

>

> Sorry for this " blue " e-mail; I'm quite overwhelmed these days. Learning

> to

> relax and be polite when I ask for a more active attention is very

> difficult

> for me at this moment. Doctors are at a point that feel too demanded, and

> my

> husband and me are exhausted. My psychologist helps me a bit; maybe I need

> an electroshock therapy to calm down

>

> I hope all of our children get better soon.

>

> Thank you all,

>

> Vanesa, mom to Guille (4) and na (charger, 5-month-old)

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

> * " El caos es un orden por descifrar " José Saramago.*

>

>

[Guest guest]

Hi Vanesa,

You are not alone, and unfortunately your experience is not unique. I have

encountered plenty of doctors who I don't feel listen to me or take my

observations seriously. We do have a wonderful local pediatrican though, who

does listen and has been a great advocate in helping us to get procedures we

think need to be done, done.

Be persistant. Keep reading, keep asking questions--ask what the risks and

benefits are to each procedure that is suggested, ask what is likely to happen

if you do nothing. Follow your mother's (or father's) instinct--if the doctor

or nurse doesn't listen, then ask for another opinion from someone else.

na needs you and her father to keep doing exactly what you are

doing--learning as much as you can in order to be the best advocate possible for

her. Unfortunately (or fortunately, depending on how you look at it), having a

child like na makes you a critical part of the team of doctors and

specialists who care for her. No matter how incredibly brilliant the doctors

are, as her parent you will always know more about her because you live with her

and care for her.

And you have a great panel of experts--right here on the list-serve. I have

on more than one occasion printed off a post and brought it into the doctor with

us. It has helped get a test or two ordered!

Hugs,

, mom to Evan, 14.5 months

Vanesa Devetach wrote:

Today it's 11 days my baby is fevered, and I'm quite down.

I feel quite lost as what way to follow. I've been asking, searching,

reading and studying plenty of material as regards CHARGE, but when the

moment comes that I talk to physicians, they tend to sort of look down on

the data I offer them. I sometimes feel they lack logic for collecting

factual information and making decissions.

The OTs and the language pathologist (phonoaudiologist?) are extremely nice

and open minded, always looking forward to learning and helping na;

they are the exception.

I wonder how you managed your relationships with your children's doctors.

I'm trying to find one eager to learn and investigate, since I need to go

back to my job again. Most of the time I'm surfing the internet, finding and

receiving wonderful info... that na's doctors don't pay much attention

to. I feel they need a secretary to help them file the data, etc., and

that's my role now, but I'd love to sit down and just be a loving mother,

not running against time to find out solutions.

The other question I have is if you had your chargers undergo an esophageal

manomatry, before a Nissen surgery is performed. I've read about it, but,

again, doctors haven't even mention it.

Sorry for this " blue " e-mail; I'm quite overwhelmed these days. Learning to

relax and be polite when I ask for a more active attention is very difficult

for me at this moment. Doctors are at a point that feel too demanded, and my

husband and me are exhausted. My psychologist helps me a bit; maybe I need

an electroshock therapy to calm down

I hope all of our children get better soon.

Thank you all,

Vanesa, mom to Guille (4) and na (charger, 5-month-old)

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

* " El caos es un orden por descifrar " José Saramago.*

[Guest guest]

Hi Vanesa,

You are not alone, and unfortunately your experience is not unique. I have

encountered plenty of doctors who I don't feel listen to me or take my

observations seriously. We do have a wonderful local pediatrican though, who

does listen and has been a great advocate in helping us to get procedures we

think need to be done, done.

Be persistant. Keep reading, keep asking questions--ask what the risks and

benefits are to each procedure that is suggested, ask what is likely to happen

if you do nothing. Follow your mother's (or father's) instinct--if the doctor

or nurse doesn't listen, then ask for another opinion from someone else.

na needs you and her father to keep doing exactly what you are

doing--learning as much as you can in order to be the best advocate possible for

her. Unfortunately (or fortunately, depending on how you look at it), having a

child like na makes you a critical part of the team of doctors and

specialists who care for her. No matter how incredibly brilliant the doctors

are, as her parent you will always know more about her because you live with her

and care for her.

And you have a great panel of experts--right here on the list-serve. I have

on more than one occasion printed off a post and brought it into the doctor with

us. It has helped get a test or two ordered!

Hugs,

, mom to Evan, 14.5 months

Vanesa Devetach wrote:

Today it's 11 days my baby is fevered, and I'm quite down.

I feel quite lost as what way to follow. I've been asking, searching,

reading and studying plenty of material as regards CHARGE, but when the

moment comes that I talk to physicians, they tend to sort of look down on

the data I offer them. I sometimes feel they lack logic for collecting

factual information and making decissions.

The OTs and the language pathologist (phonoaudiologist?) are extremely nice

and open minded, always looking forward to learning and helping na;

they are the exception.

I wonder how you managed your relationships with your children's doctors.

I'm trying to find one eager to learn and investigate, since I need to go

back to my job again. Most of the time I'm surfing the internet, finding and

receiving wonderful info... that na's doctors don't pay much attention

to. I feel they need a secretary to help them file the data, etc., and

that's my role now, but I'd love to sit down and just be a loving mother,

not running against time to find out solutions.

The other question I have is if you had your chargers undergo an esophageal

manomatry, before a Nissen surgery is performed. I've read about it, but,

again, doctors haven't even mention it.

Sorry for this " blue " e-mail; I'm quite overwhelmed these days. Learning to

relax and be polite when I ask for a more active attention is very difficult

for me at this moment. Doctors are at a point that feel too demanded, and my

husband and me are exhausted. My psychologist helps me a bit; maybe I need

an electroshock therapy to calm down

I hope all of our children get better soon.

Thank you all,

Vanesa, mom to Guille (4) and na (charger, 5-month-old)

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

* " El caos es un orden por descifrar " José Saramago.*

[Guest guest]

many drs r not the best but many r u need to get second or thrird opions

till you find the ones that you like thats how weve doenit and i no others

have to love u xxxxxx

>

> Hi Vanesa,

>

> You are not alone, and unfortunately your experience is not unique. I have

> encountered plenty of doctors who I don't feel listen to me or take my

> observations seriously. We do have a wonderful local pediatrican though, who

> does listen and has been a great advocate in helping us to get procedures we

> think need to be done, done.

>

> Be persistant. Keep reading, keep asking questions--ask what the risks and

> benefits are to each procedure that is suggested, ask what is likely to

> happen if you do nothing. Follow your mother's (or father's) instinct--if

> the doctor or nurse doesn't listen, then ask for another opinion from

> someone else.

>

> na needs you and her father to keep doing exactly what you are

> doing--learning as much as you can in order to be the best advocate possible

> for her. Unfortunately (or fortunately, depending on how you look at it),

> having a child like na makes you a critical part of the team of doctors

> and specialists who care for her. No matter how incredibly brilliant the

> doctors are, as her parent you will always know more about her because you

> live with her and care for her.

>

> And you have a great panel of experts--right here on the list-serve. I

> have on more than one occasion printed off a post and brought it into the

> doctor with us. It has helped get a test or two ordered!

>

> Hugs,

> , mom to Evan, 14.5 months

>

> Vanesa Devetach <vanesa.devetach@... <vanesa.devetach%40gmail.com>>

> wrote:

> Today it's 11 days my baby is fevered, and I'm quite down.

>

> I feel quite lost as what way to follow. I've been asking, searching,

> reading and studying plenty of material as regards CHARGE, but when the

> moment comes that I talk to physicians, they tend to sort of look down on

> the data I offer them. I sometimes feel they lack logic for collecting

> factual information and making decissions.

>

> The OTs and the language pathologist (phonoaudiologist?) are extremely

> nice

> and open minded, always looking forward to learning and helping na;

> they are the exception.

>

> I wonder how you managed your relationships with your children's doctors.

> I'm trying to find one eager to learn and investigate, since I need to go

> back to my job again. Most of the time I'm surfing the internet, finding

> and

> receiving wonderful info... that na's doctors don't pay much

> attention

> to. I feel they need a secretary to help them file the data, etc., and

> that's my role now, but I'd love to sit down and just be a loving mother,

> not running against time to find out solutions.

>

> The other question I have is if you had your chargers undergo an

> esophageal

> manomatry, before a Nissen surgery is performed. I've read about it, but,

> again, doctors haven't even mention it.

>

> Sorry for this " blue " e-mail; I'm quite overwhelmed these days. Learning

> to

> relax and be polite when I ask for a more active attention is very

> difficult

> for me at this moment. Doctors are at a point that feel too demanded, and

> my

> husband and me are exhausted. My psychologist helps me a bit; maybe I need

> an electroshock therapy to calm down

>

> I hope all of our children get better soon.

>

> Thank you all,

>

> Vanesa, mom to Guille (4) and na (charger, 5-month-old)

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

> * " El caos es un orden por descifrar " José Saramago.*

>

>

[Guest guest]

Vanesa,

My daughter had a g-tube for many years, but no nissen. 's problem was

with her swallow, not reflux, although she was given reflux meds as well, as

a precautionary measure. You asked about esphageal manometry. I took a look

at it, it seems a simple enough procedure. However, you already know she has

extreme reflux, so it many not give the doctors any new information, at this

point. What seems to be missing is a straight forward explanation from the

doctors, so that you have the opportunity to understand the decisions and

conclusions they are making.

Your knowledgeable involvement is the best tool the doctors have, as you

know your daughter best. You have to be able to articulate what you see

happening with her, what changes you see, and what suspicions you many have as

to

cause..

What caught my attention is the 11 day fever. I assume she has aspiration

pneumonia, and is being treated appropriately? (IV antibiotics, etc)

If she is continuing to receive ng feeds-is this being aspirated as well? Is

she lying down for the feeds, or upright in a baby seat? Is she vomiting?

It is an absolutely fair question to ask why they are making certain

decisions, and if there are any other treatment options which could be equally

appropriate. Are you in a large hospital where they have familiarity with

very

medically involved children? Have they seen any other children with CHARGE?

Prayers for your family,

in Ma. (, 21 yrs)

[Guest guest]

Thank you all for helping me go through these " blue " days...

According to two of her doctors, na has caught a virus, and they say

they cannot give any medicine to her.

She lies supported by cushions, and only vomitted on sept 21st, two days

before she started being fevered. She´s got a strong cold (not green or

yellow), conjuctivitis (his elder brother and me too), and is having some

problems with her tummy (it's looks like a balloon). It makes sense it's

being caused by viruses. I asked about consulting an inmunologist to help

her struggle against infections, and it's up to me and my husband that we

find one...

na is going to be " studied " by the end of November at Hospital

Garrahan, a national public (free) hospital for children. We decided to look

for other opinions from more experienced professionals who have already

diagnosed and treated children with charge, but the problem is that we'll

have to wait almost 2 months for it.

It seems she isnt't aspirating her milk, but we are plenty of doubts. The

answers all of you are offering us, help us a lot to suggest doctors other

causes for her cries, reflux, etc. Next week maybe we start seeing a new

young doctor, who may have a more " lab scientist " mind. None of her doctors

have ever seen a charger before. Just one of the nurses -who takes care of

her some nights- has been in contact with other two children with this

syndrome. She's very helpful and keeps asking doctors to be active.

Our next step is to invite two families who have chargers to join in and

have a coffee, so that we can share information and support each other. I'd

love to gather with other people who are in the same situation and start

working in groups with the OTs, etc. Any suggestions you may have will be

gladly accepted!

Vanesa

" El caos es un orden por descifrar. " José Saramago

>

> Vanesa,

> My daughter had a g-tube for many years, but no nissen. 's problem

> was

> with her swallow, not reflux, although she was given reflux meds as well,

> as

> a precautionary measure. You asked about esphageal manometry. I took a

> look

> at it, it seems a simple enough procedure. However, you already know she

> has

> extreme reflux, so it many not give the doctors any new information, at

> this

> point. What seems to be missing is a straight forward explanation from the

>

> doctors, so that you have the opportunity to understand the decisions and

> conclusions they are making.

> Your knowledgeable involvement is the best tool the doctors have, as you

> know your daughter best. You have to be able to articulate what you see

> happening with her, what changes you see, and what suspicions you many

> have as to

> cause..

> What caught my attention is the 11 day fever. I assume she has aspiration

> pneumonia, and is being treated appropriately? (IV antibiotics, etc)

> If she is continuing to receive ng feeds-is this being aspirated as well?

> Is

> she lying down for the feeds, or upright in a baby seat? Is she vomiting?

> It is an absolutely fair question to ask why they are making certain

> decisions, and if there are any other treatment options which could be

> equally

> appropriate. Are you in a large hospital where they have familiarity with

> very

> medically involved children? Have they seen any other children with

> CHARGE?

> Prayers for your family,

>

> in Ma. (, 21 yrs)

>

>

>

[Guest guest]

Vanesa,

There is such a thing as " silent aspiration. " They should be able to see it

on a barium swallow study, but if they don't all it means is that she didn't do

it during the brief interval of the test. Other tests for reflux include an

upper GI and a pH probe. My son has had a version of the upper GI (when you

have a g-tube, they call it a g-tube study instead). The pH probe can be left

in for up to 24 hrs, so it can give a better idea of what happens over a longer

period of time.

(mom to Evan 14.5 months)

Vanesa Devetach wrote:

Thank you all for helping me go through these " blue " days...

According to two of her doctors, na has caught a virus, and they say

they cannot give any medicine to her.

She lies supported by cushions, and only vomitted on sept 21st, two days

before she started being fevered. She´s got a strong cold (not green or

yellow), conjuctivitis (his elder brother and me too), and is having some

problems with her tummy (it's looks like a balloon). It makes sense it's

being caused by viruses. I asked about consulting an inmunologist to help

her struggle against infections, and it's up to me and my husband that we

find one...

na is going to be " studied " by the end of November at Hospital

Garrahan, a national public (free) hospital for children. We decided to look

for other opinions from more experienced professionals who have already

diagnosed and treated children with charge, but the problem is that we'll

have to wait almost 2 months for it.

It seems she isnt't aspirating her milk, but we are plenty of doubts. The

answers all of you are offering us, help us a lot to suggest doctors other

causes for her cries, reflux, etc. Next week maybe we start seeing a new

young doctor, who may have a more " lab scientist " mind. None of her doctors

have ever seen a charger before. Just one of the nurses -who takes care of

her some nights- has been in contact with other two children with this

syndrome. She's very helpful and keeps asking doctors to be active.

Our next step is to invite two families who have chargers to join in and

have a coffee, so that we can share information and support each other. I'd

love to gather with other people who are in the same situation and start

working in groups with the OTs, etc. Any suggestions you may have will be

gladly accepted!

Vanesa

" El caos es un orden por descifrar. " José Saramago

>

> Vanesa,

> My daughter had a g-tube for many years, but no nissen. 's problem

> was

> with her swallow, not reflux, although she was given reflux meds as well,

> as

> a precautionary measure. You asked about esphageal manometry. I took a

> look

> at it, it seems a simple enough procedure. However, you already know she

> has

> extreme reflux, so it many not give the doctors any new information, at

> this

> point. What seems to be missing is a straight forward explanation from the

>

> doctors, so that you have the opportunity to understand the decisions and

> conclusions they are making.

> Your knowledgeable involvement is the best tool the doctors have, as you

> know your daughter best. You have to be able to articulate what you see

> happening with her, what changes you see, and what suspicions you many

> have as to

> cause..

> What caught my attention is the 11 day fever. I assume she has aspiration

> pneumonia, and is being treated appropriately? (IV antibiotics, etc)

> If she is continuing to receive ng feeds-is this being aspirated as well?

> Is

> she lying down for the feeds, or upright in a baby seat? Is she vomiting?

> It is an absolutely fair question to ask why they are making certain

> decisions, and if there are any other treatment options which could be

> equally

> appropriate. Are you in a large hospital where they have familiarity with

> very

> medically involved children? Have they seen any other children with

> CHARGE?

> Prayers for your family,

>

> in Ma. (, 21 yrs)

>

>

>

[Guest guest]

, it caught my eye and worried me that you said na's stomach is

like a balloon. Please have the doctors check the stomach condition and

give you an explanation and treatment if necessary as soon as possible. A

stomach that looks like a 'balloon' could be a serious condition.

I'm hoping that na improves soon.

With very best wishes,

Re: Overwhelmed by the situation- Esophageal manomatry

Thank you all for helping me go through these " blue " days...

According to two of her doctors, na has caught a virus, and they say

they cannot give any medicine to her.

She lies supported by cushions, and only vomitted on sept 21st, two days

before she started being fevered. She´s got a strong cold (not green or

yellow), conjuctivitis (his elder brother and me too), and is having some

problems with her tummy (it's looks like a balloon). It makes sense it's

being caused by viruses. I asked about consulting an inmunologist to help

her struggle against infections, and it's up to me and my husband that we

find one...

na is going to be " studied " by the end of November at Hospital

Garrahan, a national public (free) hospital for children. We decided to look

for other opinions from more experienced professionals who have already

diagnosed and treated children with charge, but the problem is that we'll

have to wait almost 2 months for it.

It seems she isnt't aspirating her milk, but we are plenty of doubts. The

answers all of you are offering us, help us a lot to suggest doctors other

causes for her cries, reflux, etc. Next week maybe we start seeing a new

young doctor, who may have a more " lab scientist " mind. None of her doctors

have ever seen a charger before. Just one of the nurses -who takes care of

her some nights- has been in contact with other two children with this

syndrome. She's very helpful and keeps asking doctors to be active.

Our next step is to invite two families who have chargers to join in and

have a coffee, so that we can share information and support each other. I'd

love to gather with other people who are in the same situation and start

working in groups with the OTs, etc. Any suggestions you may have will be

gladly accepted!

Vanesa

" El caos es un orden por descifrar. " José Saramago

>

> Vanesa,

> My daughter had a g-tube for many years, but no nissen. 's problem

> was

> with her swallow, not reflux, although she was given reflux meds as well,

> as

> a precautionary measure. You asked about esphageal manometry. I took a

> look

> at it, it seems a simple enough procedure. However, you already know she

> has

> extreme reflux, so it many not give the doctors any new information, at

> this

> point. What seems to be missing is a straight forward explanation from the

>

> doctors, so that you have the opportunity to understand the decisions and

> conclusions they are making.

> Your knowledgeable involvement is the best tool the doctors have, as you

> know your daughter best. You have to be able to articulate what you see

> happening with her, what changes you see, and what suspicions you many

> have as to

> cause..

> What caught my attention is the 11 day fever. I assume she has aspiration

> pneumonia, and is being treated appropriately? (IV antibiotics, etc)

> If she is continuing to receive ng feeds-is this being aspirated as well?

> Is

> she lying down for the feeds, or upright in a baby seat? Is she vomiting?

> It is an absolutely fair question to ask why they are making certain

> decisions, and if there are any other treatment options which could be

> equally

> appropriate. Are you in a large hospital where they have familiarity with

> very

> medically involved children? Have they seen any other children with

> CHARGE?

> Prayers for your family,

>

> in Ma. (, 21 yrs)

>

>

>

[Guest guest]

Dear all, yesterday afternoon we were at one of her doctors (a metabolist),

who is nice experienced lady.

She kept watching na while she was breathing, seeing her stomach, etc.

She decided to give our baby another milk (in case she suffers from allergy

to cow milk proteins). She read our mail

referring to a paper about reflux caused by that allergy and comments from

parents from this forum telling that their children improved when milk was

changed, so she agreed to take the chance and see.

She also asked another test to be done, to see if there is grease in

na's faeces.

Our baby is going to be fed by continuous pump at night (12 hours), and

smaller quantities by NG tube and syringe during the day.

When I enquired about finding a pediatrician with a more " scientist " like

attitude, eager to learn, she frankly told that it won't be easy in

Argentina: most of them work long hours for little money. The few who could

be helpful, are extremely expensive. I trust that we will be able to find a

good affordable doctor...

Day thirteen, and my little lady is still fevered: three doctors agree that

it is caused by viruses and we'll have to wait. All in all, she is quite

well.

Ah, I almost forgot telling you that the metabolist also told me to stop

reading material from the internet, and that it's difficult that other

parents' contributions and experiences could be of help for na...

Nice cool afternoon here; hope you enjoy your day,

Vanesa

" El caos es un orden por descifrar. " José Saramago (Chaos is an order to be

deciphered.)

> , it caught my eye and worried me that you said na's stomach

> is

> like a balloon. Please have the doctors check the stomach condition and

> give you an explanation and treatment if necessary as soon as possible. A

> stomach that looks like a 'balloon' could be a serious condition.

>

> I'm hoping that na improves soon.

>

> With very best wishes,

>

>

> Re: Overwhelmed by the situation- Esophageal manomatry

>

> Thank you all for helping me go through these " blue " days...

>

> According to two of her doctors, na has caught a virus, and they say

> they cannot give any medicine to her.

>

> She lies supported by cushions, and only vomitted on sept 21st, two days

> before she started being fevered. She´s got a strong cold (not green or

> yellow), conjuctivitis (his elder brother and me too), and is having some

> problems with her tummy (it's looks like a balloon). It makes sense it's

> being caused by viruses. I asked about consulting an inmunologist to help

> her struggle against infections, and it's up to me and my husband that we

> find one...

>

> na is going to be " studied " by the end of November at Hospital

> Garrahan, a national public (free) hospital for children. We decided to

> look

> for other opinions from more experienced professionals who have already

> diagnosed and treated children with charge, but the problem is that we'll

> have to wait almost 2 months for it.

>

> It seems she isnt't aspirating her milk, but we are plenty of doubts. The

> answers all of you are offering us, help us a lot to suggest doctors other

> causes for her cries, reflux, etc. Next week maybe we start seeing a new

> young doctor, who may have a more " lab scientist " mind. None of her

> doctors

> have ever seen a charger before. Just one of the nurses -who takes care of

> her some nights- has been in contact with other two children with this

> syndrome. She's very helpful and keeps asking doctors to be active.

>

> Our next step is to invite two families who have chargers to join in and

> have a coffee, so that we can share information and support each other.

> I'd

> love to gather with other people who are in the same situation and start

> working in groups with the OTs, etc. Any suggestions you may have will be

> gladly accepted!

>

> Vanesa

>

> " El caos es un orden por descifrar. " José Saramago

>

> On 10/4/06, mdlinda@... <mdlinda%40aol.com>

<mdlinda@...<mdlinda%40aol.com>>

> wrote:

> >

> > Vanesa,

> > My daughter had a g-tube for many years, but no nissen. 's problem

> > was

> > with her swallow, not reflux, although she was given reflux meds as

> well,

> > as

> > a precautionary measure. You asked about esphageal manometry. I took a

> > look

> > at it, it seems a simple enough procedure. However, you already know she

> > has

> > extreme reflux, so it many not give the doctors any new information, at

> > this

> > point. What seems to be missing is a straight forward explanation from

> the

> >

> > doctors, so that you have the opportunity to understand the decisions

> and

> > conclusions they are making.

> > Your knowledgeable involvement is the best tool the doctors have, as you

> > know your daughter best. You have to be able to articulate what you see

> > happening with her, what changes you see, and what suspicions you many

> > have as to

> > cause..

> > What caught my attention is the 11 day fever. I assume she has

> aspiration

> > pneumonia, and is being treated appropriately? (IV antibiotics, etc)

> > If she is continuing to receive ng feeds-is this being aspirated as

> well?

> > Is

> > she lying down for the feeds, or upright in a baby seat? Is she

> vomiting?

> > It is an absolutely fair question to ask why they are making certain

> > decisions, and if there are any other treatment options which could be

> > equally

> > appropriate. Are you in a large hospital where they have familiarity

> with

> > very

> > medically involved children? Have they seen any other children with

> > CHARGE?

> > Prayers for your family,

> >

> > in Ma. (, 21 yrs)

> >

> >

> >

[Guest guest]

Vanesa - I have " diagnosed " and alerted 's doctors to at least two very

serious and life altering conditions because of this internet group and the

heart defect support group. Don't let anyone tell you not to explore ways to

help your child! This group is a wealth of knowledge and we deal with these

problems/conditions every day!

I just saw that you are in Argentina. We are planning a trip to Mendoza

Argentina this spring.

Good luck with your baby.

Lori Myers

Spouse - Trent, Children - (9), (6, CHARGE Syndrome, Congenital

Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal

Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of

12/22/04!, and Emma (3)

Dallas, Texas

Re: Overwhelmed by the situation- Esophageal manomatry

>

> Thank you all for helping me go through these " blue " days...

>

> According to two of her doctors, na has caught a virus, and they say

> they cannot give any medicine to her.

>

> She lies supported by cushions, and only vomitted on sept 21st, two days

> before she started being fevered. She´s got a strong cold (not green or

> yellow), conjuctivitis (his elder brother and me too), and is having some

> problems with her tummy (it's looks like a balloon). It makes sense it's

> being caused by viruses. I asked about consulting an inmunologist to help

> her struggle against infections, and it's up to me and my husband that we

> find one...

>

> na is going to be " studied " by the end of November at Hospital

> Garrahan, a national public (free) hospital for children. We decided to

> look

> for other opinions from more experienced professionals who have already

> diagnosed and treated children with charge, but the problem is that we'll

> have to wait almost 2 months for it.

>

> It seems she isnt't aspirating her milk, but we are plenty of doubts. The

> answers all of you are offering us, help us a lot to suggest doctors other

> causes for her cries, reflux, etc. Next week maybe we start seeing a new

> young doctor, who may have a more " lab scientist " mind. None of her

> doctors

> have ever seen a charger before. Just one of the nurses -who takes care of

> her some nights- has been in contact with other two children with this

> syndrome. She's very helpful and keeps asking doctors to be active.

>

> Our next step is to invite two families who have chargers to join in and

> have a coffee, so that we can share information and support each other.

> I'd

> love to gather with other people who are in the same situation and start

> working in groups with the OTs, etc. Any suggestions you may have will be

> gladly accepted!

>

> Vanesa

>

> " El caos es un orden por descifrar. " José Saramago

>

> On 10/4/06, mdlinda@... <mdlinda%40aol.com>

<mdlinda@...<mdlinda%40aol.com>>

> wrote:

> >

> > Vanesa,

> > My daughter had a g-tube for many years, but no nissen. 's problem

> > was

> > with her swallow, not reflux, although she was given reflux meds as

> well,

> > as

> > a precautionary measure. You asked about esphageal manometry. I took a

> > look

> > at it, it seems a simple enough procedure. However, you already know she

> > has

> > extreme reflux, so it many not give the doctors any new information, at

> > this

> > point. What seems to be missing is a straight forward explanation from

> the

> >

> > doctors, so that you have the opportunity to understand the decisions

> and

> > conclusions they are making.

> > Your knowledgeable involvement is the best tool the doctors have, as you

> > know your daughter best. You have to be able to articulate what you see

> > happening with her, what changes you see, and what suspicions you many

> > have as to

> > cause..

> > What caught my attention is the 11 day fever. I assume she has

> aspiration

> > pneumonia, and is being treated appropriately? (IV antibiotics, etc)

> > If she is continuing to receive ng feeds-is this being aspirated as

> well?

> > Is

> > she lying down for the feeds, or upright in a baby seat? Is she

> vomiting?

> > It is an absolutely fair question to ask why they are making certain

> > decisions, and if there are any other treatment options which could be

> > equally

> > appropriate. Are you in a large hospital where they have familiarity

> with

> > very

> > medically involved children? Have they seen any other children with

> > CHARGE?

> > Prayers for your family,

> >

> > in Ma. (, 21 yrs)

> >

> >

> >

[Guest guest]

Lori, we'll be given a master degree in CHARGE!! Today, my eldest son's

pediatrician told me that no one doctor has enough time to read such bulk of

information... Running from one job to another, as most of us do.

I decided I'll ignore those comments: they don't help us to go ahead.

If you'd like to, please let Sebastián and me hear from you when you are

coming to Argentina. Maybe we can tour you through Bs. As. city: Colón

Theatre is amazing, and many other places too. (

http://www.teatrocolon.org.ar/inicio.htm)

Have a nice day,

Vanesa

>

> Vanesa - I have " diagnosed " and alerted 's doctors to at least two

> very serious and life altering conditions because of this internet group and

> the heart defect support group. Don't let anyone tell you not to explore

> ways to help your child! This group is a wealth of knowledge and we deal

> with these problems/conditions every day!

>

> I just saw that you are in Argentina. We are planning a trip to Mendoza

> Argentina this spring.

>

> Good luck with your baby.

>

> Lori Myers

> Spouse - Trent, Children - (9), (6, CHARGE Syndrome,

> Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days,

> Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial hearing

> loss, walking as of 12/22/04!, and Emma (3)

>

> Dallas, Texas

>

> Re: Overwhelmed by the situation- Esophageal manomatry

> >

> > Thank you all for helping me go through these " blue " days...

> >

> > According to two of her doctors, na has caught a virus, and they

> say

> > they cannot give any medicine to her.

> >

> > She lies supported by cushions, and only vomitted on sept 21st, two days

> > before she started being fevered. She´s got a strong cold (not green or

> > yellow), conjuctivitis (his elder brother and me too), and is having

> some

> > problems with her tummy (it's looks like a balloon). It makes sense it's

> > being caused by viruses. I asked about consulting an inmunologist to

> help

> > her struggle against infections, and it's up to me and my husband that

> we

> > find one...

> >

> > na is going to be " studied " by the end of November at Hospital

> > Garrahan, a national public (free) hospital for children. We decided to

> > look

> > for other opinions from more experienced professionals who have already

> > diagnosed and treated children with charge, but the problem is that

> we'll

> > have to wait almost 2 months for it.

> >

> > It seems she isnt't aspirating her milk, but we are plenty of doubts.

> The

> > answers all of you are offering us, help us a lot to suggest doctors

> other

> > causes for her cries, reflux, etc. Next week maybe we start seeing a new

> > young doctor, who may have a more " lab scientist " mind. None of her

> > doctors

> > have ever seen a charger before. Just one of the nurses -who takes care

> of

> > her some nights- has been in contact with other two children with this

> > syndrome. She's very helpful and keeps asking doctors to be active.

> >

> > Our next step is to invite two families who have chargers to join in and

> > have a coffee, so that we can share information and support each other.

> > I'd

> > love to gather with other people who are in the same situation and start

> > working in groups with the OTs, etc. Any suggestions you may have will

> be

> > gladly accepted!

> >

> > Vanesa

> >

> > " El caos es un orden por descifrar. " José Saramago

> >

> > On 10/4/06, mdlinda@... <mdlinda%40aol.com> <mdlinda%40aol.com> <

> mdlinda@... <mdlinda%40aol.com><mdlinda%40aol.com>>

> > wrote:

> > >

> > > Vanesa,

> > > My daughter had a g-tube for many years, but no nissen. 's

> problem

> > > was

> > > with her swallow, not reflux, although she was given reflux meds as

> > well,

> > > as

> > > a precautionary measure. You asked about esphageal manometry. I took a

> > > look

> > > at it, it seems a simple enough procedure. However, you already know

> she

> > > has

> > > extreme reflux, so it many not give the doctors any new information,

> at

> > > this

> > > point. What seems to be missing is a straight forward explanation from

> > the

> > >

> > > doctors, so that you have the opportunity to understand the decisions

> > and

> > > conclusions they are making.

> > > Your knowledgeable involvement is the best tool the doctors have, as

> you

> > > know your daughter best. You have to be able to articulate what you

> see

> > > happening with her, what changes you see, and what suspicions you many

> > > have as to

> > > cause..

> > > What caught my attention is the 11 day fever. I assume she has

> > aspiration

> > > pneumonia, and is being treated appropriately? (IV antibiotics, etc)

> > > If she is continuing to receive ng feeds-is this being aspirated as

> > well?

> > > Is

> > > she lying down for the feeds, or upright in a baby seat? Is she

> > vomiting?

> > > It is an absolutely fair question to ask why they are making certain

> > > decisions, and if there are any other treatment options which could be

> > > equally

> > > appropriate. Are you in a large hospital where they have familiarity

> > with

> > > very

> > > medically involved children? Have they seen any other children with

> > > CHARGE?

> > > Prayers for your family,

> > >

> > > in Ma. (, 21 yrs)

> > >

> > >

> > >

[Guest guest]

:

Hope things improve soon for na.

As far as the " advice " to not go to the internet for information...in some

way the doctor is correct: There are many sites with incorrect information

on any number of things. However, when you have information from a group of

parents who have been through this, with professionals involved in this list

that truly understand the issues of CHARGE, and the information gained is

truly appropriate and beneficial... And when you have a resource like the

CAHRGE Syndrome Foundation with published materials that are also available

on the website... well, this doctor needs to understand what source(s) on

the internet you are using.

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

Ah, I almost forgot telling you that the metabolist also told me to stop

reading material from the internet, and that it's difficult that other

parents' contributions and experiences could be of help for na...

Nice cool afternoon here; hope you enjoy your day,

Vanesa

" El caos es un orden por descifrar. " José Saramago (Chaos is an order to be

deciphered.)

[Guest guest]

vanessa tu en argentina you know there is a spannish list serve to for

charge if you look in yahoos links you will find it what part of argentina r

you from my carer is pannish shes argentinan shes from buenos aires she been

in aus vente anios and i had her tres anios shes teaching me xpannish she

calls it castillano yo halbla mucho mucho perA aveses cosas to do with my

charge i nose to escribe LOL te quiero mucho ellen xxxxx

>

> Lori, we'll be given a master degree in CHARGE!! Today, my eldest son's

> pediatrician told me that no one doctor has enough time to read such bulk

> of

> information... Running from one job to another, as most of us do.

>

> I decided I'll ignore those comments: they don't help us to go ahead.

>

> If you'd like to, please let Sebastián and me hear from you when you are

> coming to Argentina. Maybe we can tour you through Bs. As. city: Colón

> Theatre is amazing, and many other places too. (

> http://www.teatrocolon.org.ar/inicio.htm)

>

> Have a nice day,

> Vanesa

>

> On 10/5/06, Lori Myers <myerstl@... <myerstl%40comcast.net>>

> wrote:

> >

> > Vanesa - I have " diagnosed " and alerted 's doctors to at least two

> > very serious and life altering conditions because of this internet group

> and

> > the heart defect support group. Don't let anyone tell you not to explore

> > ways to help your child! This group is a wealth of knowledge and we deal

> > with these problems/conditions every day!

> >

> > I just saw that you are in Argentina. We are planning a trip to Mendoza

> > Argentina this spring.

> >

> > Good luck with your baby.

> >

> > Lori Myers

> > Spouse - Trent, Children - (9), (6, CHARGE Syndrome,

> > Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days,

> > Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial

> hearing

> > loss, walking as of 12/22/04!, and Emma (3)

> >

> > Dallas, Texas

> >

> > Re: Overwhelmed by the situation- Esophageal

> manomatry

> > >

> > > Thank you all for helping me go through these " blue " days...

> > >

> > > According to two of her doctors, na has caught a virus, and they

> > say

> > > they cannot give any medicine to her.

> > >

> > > She lies supported by cushions, and only vomitted on sept 21st, two

> days

> > > before she started being fevered. She´s got a strong cold (not green

> or

> > > yellow), conjuctivitis (his elder brother and me too), and is having

> > some

> > > problems with her tummy (it's looks like a balloon). It makes sense

> it's

> > > being caused by viruses. I asked about consulting an inmunologist to

> > help

> > > her struggle against infections, and it's up to me and my husband that

> > we

> > > find one...

> > >

> > > na is going to be " studied " by the end of November at Hospital

> > > Garrahan, a national public (free) hospital for children. We decided

> to

> > > look

> > > for other opinions from more experienced professionals who have

> already

> > > diagnosed and treated children with charge, but the problem is that

> > we'll

> > > have to wait almost 2 months for it.

> > >

> > > It seems she isnt't aspirating her milk, but we are plenty of doubts.

> > The

> > > answers all of you are offering us, help us a lot to suggest doctors

> > other

> > > causes for her cries, reflux, etc. Next week maybe we start seeing a

> new

> > > young doctor, who may have a more " lab scientist " mind. None of her

> > > doctors

> > > have ever seen a charger before. Just one of the nurses -who takes

> care

> > of

> > > her some nights- has been in contact with other two children with this

> > > syndrome. She's very helpful and keeps asking doctors to be active.

> > >

> > > Our next step is to invite two families who have chargers to join in

> and

> > > have a coffee, so that we can share information and support each

> other.

> > > I'd

> > > love to gather with other people who are in the same situation and

> start

> > > working in groups with the OTs, etc. Any suggestions you may have will

> > be

> > > gladly accepted!

> > >

> > > Vanesa

> > >

> > > " El caos es un orden por descifrar. " José Saramago

> > >

> > > On 10/4/06, mdlinda@... <mdlinda%40aol.com> <mdlinda%40aol.com>

> <mdlinda%40aol.com> <

> > mdlinda@... <mdlinda%40aol.com> <mdlinda%40aol.com><mdlinda%

> 40aol.com>>

> > > wrote:

> > > >

> > > > Vanesa,

> > > > My daughter had a g-tube for many years, but no nissen. 's

> > problem

> > > > was

> > > > with her swallow, not reflux, although she was given reflux meds as

> > > well,

> > > > as

> > > > a precautionary measure. You asked about esphageal manometry. I took

> a

> > > > look

> > > > at it, it seems a simple enough procedure. However, you already know

> > she

> > > > has

> > > > extreme reflux, so it many not give the doctors any new information,

> > at

> > > > this

> > > > point. What seems to be missing is a straight forward explanation

> from

> > > the

> > > >

> > > > doctors, so that you have the opportunity to understand the

> decisions

> > > and

> > > > conclusions they are making.

> > > > Your knowledgeable involvement is the best tool the doctors have, as

> > you

> > > > know your daughter best. You have to be able to articulate what you

> > see

> > > > happening with her, what changes you see, and what suspicions you

> many

> > > > have as to

> > > > cause..

> > > > What caught my attention is the 11 day fever. I assume she has

> > > aspiration

> > > > pneumonia, and is being treated appropriately? (IV antibiotics, etc)

> > > > If she is continuing to receive ng feeds-is this being aspirated as

> > > well?

> > > > Is

> > > > she lying down for the feeds, or upright in a baby seat? Is she

> > > vomiting?

> > > > It is an absolutely fair question to ask why they are making certain

> > > > decisions, and if there are any other treatment options which could

> be

> > > > equally

> > > > appropriate. Are you in a large hospital where they have familiarity

> > > with

> > > > very

> > > > medically involved children? Have they seen any other children with

> > > > CHARGE?

> > > > Prayers for your family,

> > > >

> > > > in Ma. (, 21 yrs)

> > > >

> > > >

> > > >

[Guest guest]

Vanesa-

I think we've all had a doctor tell us to stop researching on the internet.

They are wrong. If not for what I've learned here, my daughter wouldn't be

where she is today - medically, educationally, and just in general. You

hang in there, keep learning, and keep teaching them. You'll all have to

work as a team in order to manage na's care. My best doctors know that

Aubrie lives outside their regular rules and expectations. Just because

something " usually " doesn't happen a particular way doesn't mean it isn't

happening with Aubrie. In fact, she often does exactly what they think

shouldn't happen.

Michele W

Get

<http://us.lrd.yahoo.com/_ylc=X3oDMTJtcXZxcjRxBF9TAzk3MzU5NzE0BF9wAzIEZ3JwSW

QDMjQwMjIEZ3Jwc3BJZAMxNjAwMDYxNDk4BHNlYwNuY21vZARzbGsDdG9vbGJhcgRzdGltZQMxMT

YwMDgxOTI4;_ylg=1/SIG=11c6dvmk9/**http%3a/toolbar.yahoo.com/%3f.cpdl=ygrps>

it Free!

easy 1-click access

to your groups.

Yahoo! Groups

Start

<http://groups.yahoo.com/start;_ylc=X3oDMTJtM2h0YjlqBF9TAzk3MzU5NzE0BF9wAzME

Z3JwSWQDMjQwMjIEZ3Jwc3BJZAMxNjAwMDYxNDk4BHNlYwNuY21vZARzbGsDZ3JvdXBzMgRzdGlt

ZQMxMTYwMDgxOTI4> a group

in 3 easy steps.

Connect with others.

..

<http://geo.yahoo.com/serv?s=97359714/grpId=24022/grpspId=1600061498/msgId=8

2161/stime=1160081928/nc1=3848446/nc2=2/nc3=3>

[Guest guest]

if i didnt have this group i wouldtn of found an answer as to y i am loosing

hearing and coz of this we have we think might not be the right answer but

its still an answer LOL

>

> Vanesa-

>

> I think we've all had a doctor tell us to stop researching on the

> internet.

> They are wrong. If not for what I've learned here, my daughter wouldn't be

> where she is today - medically, educationally, and just in general. You

> hang in there, keep learning, and keep teaching them. You'll all have to

> work as a team in order to manage na's care. My best doctors know

> that

> Aubrie lives outside their regular rules and expectations. Just because

> something " usually " doesn't happen a particular way doesn't mean it isn't

> happening with Aubrie. In fact, she often does exactly what they think

> shouldn't happen.

>

> Michele W

>

> Get

> <

> http://us.lrd.yahoo.com/_ylc=X3oDMTJtcXZxcjRxBF9TAzk3MzU5NzE0BF9wAzIEZ3JwSW

>

> QDMjQwMjIEZ3Jwc3BJZAMxNjAwMDYxNDk4BHNlYwNuY21vZARzbGsDdG9vbGJhcgRzdGltZQMxMT

>

> YwMDgxOTI4;_ylg=1/SIG=11c6dvmk9/**http%3a/toolbar.yahoo.com/%3f.cpdl=ygrps>

> it Free!

>

> easy 1-click access

>

> to your groups.

>

> Yahoo! Groups

>

> Start

> <

> http://groups.yahoo.com/start;_ylc=X3oDMTJtM2h0YjlqBF9TAzk3MzU5NzE0BF9wAzME

>

> Z3JwSWQDMjQwMjIEZ3Jwc3BJZAMxNjAwMDYxNDk4BHNlYwNuY21vZARzbGsDZ3JvdXBzMgRzdGlt

> ZQMxMTYwMDgxOTI4> a group

>

> in 3 easy steps.

>

> Connect with others.

>

> .

>

> <

> http://geo.yahoo.com/serv?s=97359714/grpId=24022/grpspId=1600061498/msgId=8

> 2161/stime=1160081928/nc1=3848446/nc2=2/nc3=3>

>

>

>

[Guest guest]

,

You sound overwhelmed. You have reason to. I'm glad your going to

counseling. That is one of the things that I didn't do until Patty got a bit

older.

Now I know better and know it would have been easier if I did. You are a

step ahead of the game. na is so young but with every step it gets a bit

easier to handle.

Have you gone to the CHARGE Foundation web site? In there you'd can go to

the CHARGE manual and within that is a sheet for you to keep data on your

doctor appointments. You can keep that information there to give to the next

doctors.

I personally do different things with different doctors. If it is a surgeon

I do not expect him/her to be personal. I do expect them to know what they

are doing and to be good at it though. Same goes for anesthesia. If you

really want to know how doctors are you could call the nurses station on the

floor and ask them about their opinions of a few doctors. Sometimes I get

cranky nurses but most often they help and are honest.

If the doctor is not a surgeon and needs to communicate with Patty or keep

updated on information, such as endocrinology, I expect them to be open to any

information Patty or I can give them. If they aren't we go to someone else.

The relationship with Patty's general doctor has to be a good one as they

have the most contact. I usually go with doctors who admit they don't know

but are willing to look for answers and learn.

It really is frustrating but know you'll be OK. Take it one step at a time.

Focus on the most important and then go from there. Also know we are all

thinking of you.

Electric shock therapy sounds good but so does a jolt of the coffee I make

in the morning. It's more intense and has quicker results. When all else

fails, take a bath.

Bonnie

[Guest guest]

--

I too have learned so much from the other parents on this list and

would be lost without it.

We are lucky to have a pediatrician who asks if I've learned about

anything new we should be looking into and who understands that I know

more about Eddie and CHARGE than she does. Knowing that, if she refers

Eddie to someone who doesn't have the best bedside manner, I figure its

because the other doctor really knows his stuff. No problems so far,

but also no serious health crises. Hang in there,

joanne