Explaining to a child why they are seeing a doctor?

[Guest guest]

Hi everyone

Last week I was having a long discussion with a mother of a child from

's school. Her son aged 8/9 has undergone gene testing for CHARGE

(and awaiting the results) but there is nothing obviously CHARGE about him.

However the longer we spoke the more I felt that he does have CHARGE.

The question she asked me (more rhetorically than expecting me to have an

answer) was how does she explain to her son the need to see additional

doctors. He is comfortable with being deaf - his friends are deaf, he

attends a school for the deaf, his first language is sign etc. Even if he

does not test positive I believe he will be seeing additional doctors so how

have you explained either CHARGE to your child or the reason why he/she is

seeing this doctor or that doctor?

Thanks

Simon

[Guest guest]

Simon-

What kind of dr would the child need to see? Aubrie understands that CHARGE

is the reason her body doesn't always work like other people's. She knows

what area each dr works with. She knows how she is affected in each area

and what each dr is trying to do for her. For ex: she knows the ear dr

keeps her ears healthy and hearing well, the eye dr keeps her eyes healthy

and seeing well, the heart dr makes sure her heart is healthy, etc.

If this boy will need a heart scan or VCUG or something just to screen for

other CHARGE complications without having any symptoms, I can see that being

difficult. It's not like he'll automatically understand the reason for

going.

However, if it's decided that his deafness comes from CHARGE, then the mom

can explain that to him. Then she can let him know that most of the time

CHARGE effects more than hearing. Hopefully, he would understand that some

of the other effects could be hidden and that it makes sense to check them

out.

He sounds like a bright kid. Regardless of the test results, if the parents

and drs agree that CHARGE seems like the right dx, then I think his mom can

explain that to him.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Simon,

This little lad is around the same age as Jack. Jack is very aware of his

differences but takes all his Dr and hospital appts in his stride. Like

Aubrie he knows who each and every Dr is and what part of his body they deal

with.He knows he has CHARGE.

He has always been very cool,calm and collected about his surgeries as well.

We haven't told him about his upcoming heart surgery yet as it could be as

far as 6mths away but we will tell him nearer the time. I'm sure he will deal

with it much better than us !!!

If the parents would like to talk, please give them my number.

Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE

Scotland

[Guest guest]

Simon,

This little lad is around the same age as Jack. Jack is very aware of his

differences but takes all his Dr and hospital appts in his stride. Like

Aubrie he knows who each and every Dr is and what part of his body they deal

with.He knows he has CHARGE.

He has always been very cool,calm and collected about his surgeries as well.

We haven't told him about his upcoming heart surgery yet as it could be as

far as 6mths away but we will tell him nearer the time. I'm sure he will deal

with it much better than us !!!

If the parents would like to talk, please give them my number.

Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE

Scotland

[Guest guest]

interesting

>

> Simon-

> What kind of dr would the child need to see? Aubrie understands that

> CHARGE

> is the reason her body doesn't always work like other people's. She knows

> what area each dr works with. She knows how she is affected in each area

> and what each dr is trying to do for her. For ex: she knows the ear dr

> keeps her ears healthy and hearing well, the eye dr keeps her eyes healthy

> and seeing well, the heart dr makes sure her heart is healthy, etc.

>

> If this boy will need a heart scan or VCUG or something just to screen for

> other CHARGE complications without having any symptoms, I can see that

> being

> difficult. It's not like he'll automatically understand the reason for

> going.

>

> However, if it's decided that his deafness comes from CHARGE, then the mom

> can explain that to him. Then she can let him know that most of the time

> CHARGE effects more than hearing. Hopefully, he would understand that

> some

> of the other effects could be hidden and that it makes sense to check them

> out.

>

> He sounds like a bright kid. Regardless of the test results, if the

> parents

> and drs agree that CHARGE seems like the right dx, then I think his mom

> can

> explain that to him.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

>

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>

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> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Simon and Michele,

I have thoughts about this but not one long moment to post. So..... I may miss

the boat on this and others may have deeper thoughts that they can get out

first. But, I will post my two cents when I am free from the chains of reports

due before Spring Break on Friday (tomorrow)!

pam

> ----------

> From: CHARGE on behalf of simon howard

> Reply To: CHARGE

> Sent: Wednesday, April 12, 2006 6:32 PM

> To: CHARGE

> Subject: Explaining to a child why they are seeing a doctor?

>

> Hi everyone

>

> Last week I was having a long discussion with a mother of a child from

> 's school. Her son aged 8/9 has undergone gene testing for CHARGE

> (and awaiting the results) but there is nothing obviously CHARGE about him.

> However the longer we spoke the more I felt that he does have CHARGE.

>

> The question she asked me (more rhetorically than expecting me to have an

> answer) was how does she explain to her son the need to see additional

> doctors. He is comfortable with being deaf - his friends are deaf, he

> attends a school for the deaf, his first language is sign etc. Even if he

> does not test positive I believe he will be seeing additional doctors so how

> have you explained either CHARGE to your child or the reason why he/she is

> seeing this doctor or that doctor?

>

> Thanks

>

> Simon

>

>

>

[Guest guest]

I dont understand how having a new dx would nesisarily mean automaticly more

doctor appointments. Im more matter of fact when it comes to charge. Charge

is just what i have. Dosnt change anything for me. Most people dont know

what charge is anyways so its just a name of what i have. Its a name that

all my health issues fall under.

Dunno really what to say.

Chantelle

[Guest guest]

I dont understand how having a new dx would nesisarily mean automaticly more

doctor appointments. Im more matter of fact when it comes to charge. Charge

is just what i have. Dosnt change anything for me. Most people dont know

what charge is anyways so its just a name of what i have. Its a name that

all my health issues fall under.

Dunno really what to say.

Chantelle

[Guest guest]

Thinking about this situation, I think the main issue is the fact that the

little boy is unaware at his age (8/9) of having any issues other than

deafness. His parents have kind of not been particularly proactive in

finding out more ( this is not a damning comment as I think the mother is

really quite fantastic and I am somewhat in awe of her in relation to how

she has dealt with her child's deafness, ensuring he has contact with the

deaf comminity, and also his sibling relationship). If I think about

, she has always seen several doctors, so hopefully broaching the

subject of why when she has the language for the discussion should not be

too difficult. However, for a child who has thought up to now that he is

only deaf, I think it is more difficult as he is more aware of what is

happening to him (to quote his mother, he was " required to show his willy

to a stranger " in checking out the possibility of CHARGE and micropenis.

His sister does not have to do any of this). Guess the bigger issue is how

you explain to someone who has not been subject to several medical

interventions throughout his life why suddenly he may need to see more

doctors than he has before.

In answer to your question Chantelle, the parents acknowledge that he is

small for his age so may need to see endo, there appear to be issues about

airways so possible ENT interventios, there have been some behavioural issue

and also some emotional regulation issues so neuro or child psych may be

indicated (although I think this is les likely. I am just thinking off the

top of my head at almost midnight so forgive the vague response).

I spoke to the mother immediately after Simon (poor woman had only rang to

see how 's CI surgery went) and she was by then acknowledging that

there were lots of issues that they needed to address or investigate,

including making themselves more familiar with CHARGE. As I told her,

whether he turns out to have CHARGE or not, there is a great deal that one

can learn from syndromes that have issues that your child presents with and

most groups are very welcoming.

Any further thoughts would of course still be very welcome (although this is

really Simon's question but I see mum regularly at parents' sign classes at

school).

Flo

>

> I dont understand how having a new dx would nesisarily mean automaticly

> more

> doctor appointments. Im more matter of fact when it comes to charge.

> Charge

> is just what i have. Dosnt change anything for me. Most people dont know

> what charge is anyways so its just a name of what i have. Its a name that

> all my health issues fall under.

>

> Dunno really what to say.

>

>

> Chantelle

>

>

>

[Guest guest]

Thinking about this situation, I think the main issue is the fact that the

little boy is unaware at his age (8/9) of having any issues other than

deafness. His parents have kind of not been particularly proactive in

finding out more ( this is not a damning comment as I think the mother is

really quite fantastic and I am somewhat in awe of her in relation to how

she has dealt with her child's deafness, ensuring he has contact with the

deaf comminity, and also his sibling relationship). If I think about

, she has always seen several doctors, so hopefully broaching the

subject of why when she has the language for the discussion should not be

too difficult. However, for a child who has thought up to now that he is

only deaf, I think it is more difficult as he is more aware of what is

happening to him (to quote his mother, he was " required to show his willy

to a stranger " in checking out the possibility of CHARGE and micropenis.

His sister does not have to do any of this). Guess the bigger issue is how

you explain to someone who has not been subject to several medical

interventions throughout his life why suddenly he may need to see more

doctors than he has before.

In answer to your question Chantelle, the parents acknowledge that he is

small for his age so may need to see endo, there appear to be issues about

airways so possible ENT interventios, there have been some behavioural issue

and also some emotional regulation issues so neuro or child psych may be

indicated (although I think this is les likely. I am just thinking off the

top of my head at almost midnight so forgive the vague response).

I spoke to the mother immediately after Simon (poor woman had only rang to

see how 's CI surgery went) and she was by then acknowledging that

there were lots of issues that they needed to address or investigate,

including making themselves more familiar with CHARGE. As I told her,

whether he turns out to have CHARGE or not, there is a great deal that one

can learn from syndromes that have issues that your child presents with and

most groups are very welcoming.

Any further thoughts would of course still be very welcome (although this is

really Simon's question but I see mum regularly at parents' sign classes at

school).

Flo

>

> I dont understand how having a new dx would nesisarily mean automaticly

> more

> doctor appointments. Im more matter of fact when it comes to charge.

> Charge

> is just what i have. Dosnt change anything for me. Most people dont know

> what charge is anyways so its just a name of what i have. Its a name that

> all my health issues fall under.

>

> Dunno really what to say.

>

>

> Chantelle

>

>

>

[Guest guest]

You know, Simon,

when this post came through I thought I had something interesting to add, but

for the life of me, it has left my pea brain. I am sure, just sure, that I had

some pithy comment but alas, my memory has faded.

However, I do think that the for the young CHARGE people who can understand

the picture that CHARGE paints for them--past, present, future---they should

know why each doctor has been important. It empowers them about their own

health, not to mention, it shows them how far they have come and the kind of

impact their successes have had on their families.

As they reach the ages that they become the reporters for their health visits,

knowing about their CHARGE can help them make decisons that will impact their

daily lives. For example, if they are taking medications (think growth hormone,

ADD, sleep, seizure, Tourettes/tic disorder, etc.) they should know why and what

the ramifications for NOT taking them (impact on themselves and their parents,

friends, school, etc.). This can be important, too, as kids get to the risk

taking ages and alcohol, drugs, and driving become issues .

And.... by knowing their own history, they then also have the genetic

information they need for their own future family planning.

Like most of us, eventually our CHARGE kids will only have (hopefully) one

primary care doctor--when they are teenagers/young adults--and like us, they

will expect that the primary care doctor will have their history and can make

referrals based on this. So... this young person you are talking about Simon,

while his medical life doesn't appear so complicated as many of the others, his

CHARGE should be part of his vocabulary and part of his dialogue (life long even

after all the " big stuff " is resolved) with his physician forever.

Of course this is just my two cents and this topic appeared a while ago and

perhaps you have all moved on and my two cents is too late!!!

pam

[Guest guest]

You know, Simon,

when this post came through I thought I had something interesting to add, but

for the life of me, it has left my pea brain. I am sure, just sure, that I had

some pithy comment but alas, my memory has faded.

However, I do think that the for the young CHARGE people who can understand

the picture that CHARGE paints for them--past, present, future---they should

know why each doctor has been important. It empowers them about their own

health, not to mention, it shows them how far they have come and the kind of

impact their successes have had on their families.

As they reach the ages that they become the reporters for their health visits,

knowing about their CHARGE can help them make decisons that will impact their

daily lives. For example, if they are taking medications (think growth hormone,

ADD, sleep, seizure, Tourettes/tic disorder, etc.) they should know why and what

the ramifications for NOT taking them (impact on themselves and their parents,

friends, school, etc.). This can be important, too, as kids get to the risk

taking ages and alcohol, drugs, and driving become issues .

And.... by knowing their own history, they then also have the genetic

information they need for their own future family planning.

Like most of us, eventually our CHARGE kids will only have (hopefully) one

primary care doctor--when they are teenagers/young adults--and like us, they

will expect that the primary care doctor will have their history and can make

referrals based on this. So... this young person you are talking about Simon,

while his medical life doesn't appear so complicated as many of the others, his

CHARGE should be part of his vocabulary and part of his dialogue (life long even

after all the " big stuff " is resolved) with his physician forever.

Of course this is just my two cents and this topic appeared a while ago and

perhaps you have all moved on and my two cents is too late!!!

pam

[Guest guest]

You know, Simon,

when this post came through I thought I had something interesting to add, but

for the life of me, it has left my pea brain. I am sure, just sure, that I had

some pithy comment but alas, my memory has faded.

However, I do think that the for the young CHARGE people who can understand

the picture that CHARGE paints for them--past, present, future---they should

know why each doctor has been important. It empowers them about their own

health, not to mention, it shows them how far they have come and the kind of

impact their successes have had on their families.

As they reach the ages that they become the reporters for their health visits,

knowing about their CHARGE can help them make decisons that will impact their

daily lives. For example, if they are taking medications (think growth hormone,

ADD, sleep, seizure, Tourettes/tic disorder, etc.) they should know why and what

the ramifications for NOT taking them (impact on themselves and their parents,

friends, school, etc.). This can be important, too, as kids get to the risk

taking ages and alcohol, drugs, and driving become issues .

And.... by knowing their own history, they then also have the genetic

information they need for their own future family planning.

Like most of us, eventually our CHARGE kids will only have (hopefully) one

primary care doctor--when they are teenagers/young adults--and like us, they

will expect that the primary care doctor will have their history and can make

referrals based on this. So... this young person you are talking about Simon,

while his medical life doesn't appear so complicated as many of the others, his

CHARGE should be part of his vocabulary and part of his dialogue (life long even

after all the " big stuff " is resolved) with his physician forever.

Of course this is just my two cents and this topic appeared a while ago and

perhaps you have all moved on and my two cents is too late!!!

pam

[Guest guest]

Pam-

It's never too late to add something. Your comments helped me! I talk to

Aubrie about CHARGE all the time, she knows the drs purposes, she understand

what evaluations and IEPs are about (at an 8-yr-old level)... but it has

been hard for me to explain why I have been doing that. You put words to

that purpose for me. Thanks!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Pam-

It's never too late to add something. Your comments helped me! I talk to

Aubrie about CHARGE all the time, she knows the drs purposes, she understand

what evaluations and IEPs are about (at an 8-yr-old level)... but it has

been hard for me to explain why I have been doing that. You put words to

that purpose for me. Thanks!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Pam, you said it well. I think thats how i was thinking it could be

explained i just didnt know how to best say it. Glad you said it though.

Chantelle

[Guest guest]

Pam, you said it well. I think thats how i was thinking it could be

explained i just didnt know how to best say it. Glad you said it though.

Chantelle

[Guest guest]

Nice job Pam!

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Nice job Pam!

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Pam,

Never too late. I learnt a few important lessons here too. What's more,

the school in question is not back until this coming week so neither of us

has bumped into " mum " . I am sure she will appreciate all the input. She is

ordinarily a proactive parent, just I think this issue sort of paralysed

her. She is a parent governor at J's school so not a shrinking violet.

Thank you, you are so right. I am a great believer in keeping kids informed

as possible about everything to the point where I do worry if I am

overloading them. As soon as J has the language, there will of course be a

new mission to educate her as much as possible on the medical, therapeutic

and social interventions and the implications of CHARGE. She needs to take

control of her future and we cannot expect her to do that in the absence of

information about her own syndrome (feeling sorry for the poor girl

already!).

Pam, on an addendum, never underestimate the extent and value of your

wisdom.

Cheers............

Flo

[Guest guest]

Pam,

Never too late. I learnt a few important lessons here too. What's more,

the school in question is not back until this coming week so neither of us

has bumped into " mum " . I am sure she will appreciate all the input. She is

ordinarily a proactive parent, just I think this issue sort of paralysed

her. She is a parent governor at J's school so not a shrinking violet.

Thank you, you are so right. I am a great believer in keeping kids informed

as possible about everything to the point where I do worry if I am

overloading them. As soon as J has the language, there will of course be a

new mission to educate her as much as possible on the medical, therapeutic

and social interventions and the implications of CHARGE. She needs to take

control of her future and we cannot expect her to do that in the absence of

information about her own syndrome (feeling sorry for the poor girl

already!).

Pam, on an addendum, never underestimate the extent and value of your

wisdom.

Cheers............

Flo

[Guest guest]

Now I am not sure what the heck I have done to the computer but I am posting

things and they are coming up as posted by Simon. Hmmmm, perhaps I could

just carry on and blame him for any misdemeanours (sp?)! Ah well, hope it

is obvious who the " poster " is. I am trying again so here's hoping!

Flo

>

> Pam,

> Never too late. I learnt a few important lessons here too. What's more,

> the school in question is not back until this coming week so neither of us

> has bumped into " mum " . I am sure she will appreciate all the input. She

> is

> ordinarily a proactive parent, just I think this issue sort of paralysed

> her. She is a parent governor at J's school so not a shrinking violet.

>

> Thank you, you are so right. I am a great believer in keeping kids

> informed

> as possible about everything to the point where I do worry if I am

> overloading them. As soon as J has the language, there will of course be

> a

> new mission to educate her as much as possible on the medical, therapeutic

> and social interventions and the implications of CHARGE. She needs to

> take

> control of her future and we cannot expect her to do that in the absence

> of

> information about her own syndrome (feeling sorry for the poor girl

> already!).

>

> Pam, on an addendum, never underestimate the extent and value of your

> wisdom.

>

> Cheers............

> Flo

>

>

>

[Guest guest]

Now I am not sure what the heck I have done to the computer but I am posting

things and they are coming up as posted by Simon. Hmmmm, perhaps I could

just carry on and blame him for any misdemeanours (sp?)! Ah well, hope it

is obvious who the " poster " is. I am trying again so here's hoping!

Flo

>

> Pam,

> Never too late. I learnt a few important lessons here too. What's more,

> the school in question is not back until this coming week so neither of us

> has bumped into " mum " . I am sure she will appreciate all the input. She

> is

> ordinarily a proactive parent, just I think this issue sort of paralysed

> her. She is a parent governor at J's school so not a shrinking violet.

>

> Thank you, you are so right. I am a great believer in keeping kids

> informed

> as possible about everything to the point where I do worry if I am

> overloading them. As soon as J has the language, there will of course be

> a

> new mission to educate her as much as possible on the medical, therapeutic

> and social interventions and the implications of CHARGE. She needs to

> take

> control of her future and we cannot expect her to do that in the absence

> of

> information about her own syndrome (feeling sorry for the poor girl

> already!).

>

> Pam, on an addendum, never underestimate the extent and value of your

> wisdom.

>

> Cheers............

> Flo

>

>

>

[Guest guest]

Now I am not sure what the heck I have done to the computer but I am posting

things and they are coming up as posted by Simon. Hmmmm, perhaps I could

just carry on and blame him for any misdemeanours (sp?)! Ah well, hope it

is obvious who the " poster " is. I am trying again so here's hoping!

Flo

>

> Pam,

> Never too late. I learnt a few important lessons here too. What's more,

> the school in question is not back until this coming week so neither of us

> has bumped into " mum " . I am sure she will appreciate all the input. She

> is

> ordinarily a proactive parent, just I think this issue sort of paralysed

> her. She is a parent governor at J's school so not a shrinking violet.

>

> Thank you, you are so right. I am a great believer in keeping kids

> informed

> as possible about everything to the point where I do worry if I am

> overloading them. As soon as J has the language, there will of course be

> a

> new mission to educate her as much as possible on the medical, therapeutic

> and social interventions and the implications of CHARGE. She needs to

> take

> control of her future and we cannot expect her to do that in the absence

> of

> information about her own syndrome (feeling sorry for the poor girl

> already!).

>

> Pam, on an addendum, never underestimate the extent and value of your

> wisdom.

>

> Cheers............

> Flo

>

>

>

[Guest guest]

flo crazy

>

> Now I am not sure what the heck I have done to the computer but I am

> posting

> things and they are coming up as posted by Simon. Hmmmm, perhaps I could

> just carry on and blame him for any misdemeanours (sp?)! Ah well, hope it

> is obvious who the " poster " is. I am trying again so here's hoping!

>

> Flo

>

>

>

> >

> > Pam,

> > Never too late. I learnt a few important lessons here too. What's

> more,

> > the school in question is not back until this coming week so neither of

> us

> > has bumped into " mum " . I am sure she will appreciate all the

> input. She

> > is

> > ordinarily a proactive parent, just I think this issue sort of paralysed

> > her. She is a parent governor at J's school so not a shrinking violet.

> >

> > Thank you, you are so right. I am a great believer in keeping kids

> > informed

> > as possible about everything to the point where I do worry if I am

> > overloading them. As soon as J has the language, there will of course

> be

> > a

> > new mission to educate her as much as possible on the medical,

> therapeutic

> > and social interventions and the implications of CHARGE. She needs to

> > take

> > control of her future and we cannot expect her to do that in the absence

> > of

> > information about her own syndrome (feeling sorry for the poor girl

> > already!).

> >

> > Pam, on an addendum, never underestimate the extent and value of your

> > wisdom.

> >

> > Cheers............

> > Flo

> >

> >

> >

>

>

>