Re: Ear Drainage Issues

[Guest guest]

-

No answers for you -- just so sorry for Carmen's discomfort.

Michele W

Aubrie's mom

[Guest guest]

This might disturb you, and I'm so sorry. Our , years ago, had a

staph resistent infection. She was perhaps 7 at the time and had had

tubes virtually all of her life. Despite constant medical attention, the

infection continued. As i've said on the list before, and I'm sure her ENT

would deny it, he finally gave ME an open antibiotic script, had me buy a

professional otoscope, and we went from there. I got to know 's ears

so well that I knew when a little pink would lead to big drainage.Infectious

disease drs. gave us certain things to try, but nothing worked. Finally -

months after this started - her ENT removed her tubes and the infection

vanished. Unfortunately, she continued to have less severe infections for

the next few years and has now lost all hearing (at birth she was in the

mild range of hearing loss, corrected to near normal, in her right ear,

moderate, sloping to severe in her left).

I have no answers for you but write in the hope that you'll push as hard

as you possibly can for help and information. I don't want one other child

to wind up deprived as has.

Email me if you want more information/details. --- Martha

[Guest guest]

We used Cipro drops with good luck. Also, Kennedy wore in the ear hearing aids

for the first five years of her life and had constant

infections/drainage/smelliness/gook coming out of her ears. She now wears a

BAHA hearing aid (bone conduction aid worn on a band on her head) and she has

had NONE since then. She now has no tubes either, as she has perfs in both her

ear drums that act as tubes

[Guest guest]

Martha and ,

Patty lost all hearing on her left and has a progressive hearing loss on the

right due to chronic otitus media, or ear infections. Growing up she had

numerous PE tubes, had a mastoidectomy on her left and had her hearing bones

rebuilt. She had so may tubes I forget the exact number. She always rejected

them. At this point she no longer has ear drums which is good because her ears

can drain.

We were told the reason she had the number of infections is due to her

submucus cleft and her nonfunctioning Eustachian tubes. She was on numerous

antibiotics for that and her bladder infections so she ended up resistant to

many.

I learned her behaviors and could stop an infection from getting bad. One of

the most important things we do for her is to NEVER EVER let any moisture get

in her ears. Moisture lets bacteria grow quickly. She wears plugs in the

shower and plugs and a head band when swimming. She never takes a bath. I also

learned how to clean out her ears and to this day she collects tons of gup.

She also requires suctioning now only about two times a year. She used to need

more. Oh and she also grew polyps and had them taken out with the suctioning.

When she gets to the point where it starts to smell funny she also has eye

drops we put in. All others are too harsh and can damage the bones or the inner

ear. We also had to do this when she had PE tubes. Other types of drops are

too dangerous and she also can never have anything with steroids in it. We

also give her the drops if she gets any moisture in her ear canal.

We have been incredibly diligent in keeping her stable and dry. She hasn't

lost any hearing in about three or four years.

Bonnie, Mom to Kris 22, Patty CHARGE and wife to

[Guest guest]

,

Did you have to flush out Kennedy's ears or did you let them just drain

on their own?

> We used Cipro drops with good luck. Also, Kennedy wore in the ear

hearing aids for the first five years of her life and had constant

infections/drainage/smelliness/gook coming out of her ears. She now

wears a BAHA hearing aid (bone conduction aid worn on a band on her

head) and she has had NONE since then. She now has no tubes either, as

she has perfs in both her ear drums that act as tubes

>

>

>

>

[Guest guest]

Martha,

I just knew there would be someone else who had this issue. Can you

tell me when 's hearing started to decline? What do you think

most contributed to her hearing loss? Was it the infections after

the tubes were out? Her hearing at birth is the same as Carmen's.

So, while it does disturb me, I needed to hear exactly what you told

me. Do you think the tubes actually caused the infection? Wow, I

know I have lots of questions, but I think that other parents could

benefit from hearing this, so let's stay on the list.

Thanks soooo much!!

> This might disturb you, and I'm so sorry. Our , years ago,

had a

> staph resistent infection. She was perhaps 7 at the time and had

had

> tubes virtually all of her life. Despite constant medical

attention, the

> infection continued. As i've said on the list before, and I'm sure

her ENT

> would deny it, he finally gave ME an open antibiotic script, had me

buy a

> professional otoscope, and we went from there. I got to know

's ears

> so well that I knew when a little pink would lead to big

drainage.Infectious

> disease drs. gave us certain things to try, but nothing worked.

Finally -

> months after this started - her ENT removed her tubes and the

infection

> vanished. Unfortunately, she continued to have less severe

infections for

> the next few years and has now lost all hearing (at birth she was

in the

> mild range of hearing loss, corrected to near normal, in her right

ear,

> moderate, sloping to severe in her left).

> I have no answers for you but write in the hope that you'll push

as hard

> as you possibly can for help and information. I don't want one

other child

> to wind up deprived as has.

> Email me if you want more information/details. --- Martha

>

>

>

>

[Guest guest]

I know with my hearing loss, there was bone

conduction loss, but i think antibiotics played a

huge part as well. However i dont think that

means noone should go on antibiotics. Many times

charge kids cant fight off an infection and it

gets so bad they need antibiotics, and lots of

it.

I had tons of infections, but i had tons more

antibiotics too.

Chantelle

Overheard in the office of the food and drug administration: If laughter is the

best medicin, shouldnt we be regulating it?

______________________________________________________________________

Post your free ad now! http://personals.yahoo.ca

[Guest guest]

,

Usually they would just drain a LOT on their own, it was really gross and really

stinky and when it was going on, she couldn't wear her hearing aids (at the time

she wore in the ear digital hearing aids).

Weir

lisaweir@...

http://ca.geocities.com/weirfamilyrogers

[Guest guest]

,

I had email problems, I'm just catching up. I assume you are talking about

ear infections and draining. I could repeat 's message word for word. Our

20, has had this problem all her life. Countless infections, draining and

antibiotics. Stinky and no hearing aids until the infection is gone sums it up

really well.

Good luck with clearing up the infection.

Lynn

Mom to Tom 26, 20 cHARGE, and wife to Doug

Re: Re: Ear Drainage Issues

,

Usually they would just drain a LOT on their own, it was really gross and

really stinky and when it was going on, she couldn't wear her hearing aids (at

the time she wore in the ear digital hearing aids).

Weir

lisaweir@...

http://ca.geocities.com/weirfamilyrogers

[Guest guest]

Bonnie,

Thanks for this info. Can you tell me how you clean out Patty's

ears? I use acetic acid with a syringe. I will get ear plugs for

sure. And, why not drops with Steriods in them? That's what I have

now and would like to make sure I shouldn't be changing them. How do

you know if a drop is too harsh?

> Martha and ,

>

> Patty lost all hearing on her left and has a progressive hearing

loss on the

> right due to chronic otitus media, or ear infections. Growing up

she had

> numerous PE tubes, had a mastoidectomy on her left and had her

hearing bones

> rebuilt. She had so may tubes I forget the exact number. She

always rejected

> them. At this point she no longer has ear drums which is good

because her ears

> can drain.

>

> We were told the reason she had the number of infections is due to

her

> submucus cleft and her nonfunctioning Eustachian tubes. She was on

numerous

> antibiotics for that and her bladder infections so she ended up

resistant to many.

>

> I learned her behaviors and could stop an infection from getting

bad. One of

> the most important things we do for her is to NEVER EVER let any

moisture get

> in her ears. Moisture lets bacteria grow quickly. She wears plugs

in the

> shower and plugs and a head band when swimming. She never takes a

bath. I also

> learned how to clean out her ears and to this day she collects tons

of gup.

> She also requires suctioning now only about two times a year. She

used to need

> more. Oh and she also grew polyps and had them taken out with the

suctioning.

>

> When she gets to the point where it starts to smell funny she also

has eye

> drops we put in. All others are too harsh and can damage the bones

or the inner

> ear. We also had to do this when she had PE tubes. Other types of

drops are

> too dangerous and she also can never have anything with steroids in

it. We

> also give her the drops if she gets any moisture in her ear canal.

>

> We have been incredibly diligent in keeping her stable and dry.

She hasn't

> lost any hearing in about three or four years.

>

> Bonnie, Mom to Kris 22, Patty CHARGE and wife to

>

>

>

[Guest guest]

,

I'm glad that you wrote back. This has been such a big issue for us for

20 years that I might just ask Andy to drop you a line, too, when he's

home. I warn you, however, that really bad feelings about all has had

to endure needlessly, we believe, with her ears could come through...This

is one thing that truly angers the two of us.

I think there are three main problems: 1) recognizing that there IS an

infection and treating it; 2) treating it adequately. As has been said on this

list, our kiddos seem to often need to be on antibiotics longer than others,

and this isn't often recognized. Moreover, an antibiotic may need to be

changed. 3) was never given anything for pain or to calm her during

these episodes as long as she was in Springfield. This just amazes me.

Since she usually shows us the pain via self-abuse, we know to give her

Tylenol but also Ativan to calm her.

I don't think I was the one who said that some drops hurt her.

Cleaning ears: at home, we have used sort a bulb syringe her dr

suggested. It doesn't work perfectly. When the ear drum is patent (no hole,

no tubes), the doctors and/or nurses have successfully washed her ears

with water under light pressure. It's a rather messy procedure but doesn't

seem to hurt; in fact, has to be held for it but just laughs! We only do

this when the drum is blocked with wax and the dr needs to get a real look

at the situaiton.

Her ENT here has used a mini electric suction device (vacuum cleaner).

It terrifies (takes Andy, a nurse, and me + the dr). One time, the ENT

borrowed a dentist friend's chair and sedating stuff and lightly put her

under.

I think the warning about getting water in the ears is great. However,

one ENT told me that it is absolutely impossible to keep all moisture out.

When could still use aids, we always had the molds professionally

made. Now, I buy the pliable ones at the drugstore.

There was something more I really wanted to share, but it escapes me

now. When I think of it, I'll pass it along.

Let me know what more I can share ------Martha

Note: When I was a child and had an ear infection, my father was a dr and

would immediately put Auralgan (sp?) in each ear. This always happened

at night, and he always sent me to ENT the following day. Now that 's

drums are closed, we're started using it for pain (it doesn't cure anything)

when we first suspect it. Works wonders - as long as you don't use it if

there are tubes or any other opening. I won't be without the stuff!

[Guest guest]

Martha,

You are so kind to resurface all of these issues to help me. I can

only imagine how frustrating this has been. It helps me to know that

I am not crazy when I KNOW it is her ears and not a virus that is

bothering Carmen. You have given me new strength to fight this

battle. I hope and pray that Carmen doesn't lose more of her

hearing, for sure. Please let me know if you think of what you were

going to tell me--and if Andy has any more to add, I'd appreciate

hearing from him, too. I don't know how to convince these folks of

Carmen's ear issues other than to keep calling and calling until they

treat her. I will be starting my rampage on Monday!

> ,

> I'm glad that you wrote back. This has been such a big issue for

us for

> 20 years that I might just ask Andy to drop you a line, too, when

he's

> home. I warn you, however, that really bad feelings about all

has had

> to endure needlessly, we believe, with her ears could come

through...This

> is one thing that truly angers the two of us.

> I think there are three main problems: 1) recognizing that there

IS an

> infection and treating it; 2) treating it adequately. As has been

said on this

> list, our kiddos seem to often need to be on antibiotics longer

than others,

> and this isn't often recognized. Moreover, an antibiotic may need

to be

> changed. 3) was never given anything for pain or to calm her

during

> these episodes as long as she was in Springfield. This just amazes

me.

> Since she usually shows us the pain via self-abuse, we know to give

her

> Tylenol but also Ativan to calm her.

> I don't think I was the one who said that some drops hurt her.

> Cleaning ears: at home, we have used sort a bulb syringe her dr

> suggested. It doesn't work perfectly. When the ear drum is patent

(no hole,

> no tubes), the doctors and/or nurses have successfully washed her

ears

> with water under light pressure. It's a rather messy procedure but

doesn't

> seem to hurt; in fact, has to be held for it but just laughs!

We only do

> this when the drum is blocked with wax and the dr needs to get a

real look

> at the situaiton.

> Her ENT here has used a mini electric suction device (vacuum

cleaner).

> It terrifies (takes Andy, a nurse, and me + the dr). One

time, the ENT

> borrowed a dentist friend's chair and sedating stuff and lightly

put her

> under.

> I think the warning about getting water in the ears is great.

However,

> one ENT told me that it is absolutely impossible to keep all

moisture out.

> When could still use aids, we always had the molds

professionally

> made. Now, I buy the pliable ones at the drugstore.

> There was something more I really wanted to share, but it

escapes me

> now. When I think of it, I'll pass it along.

> Let me know what more I can share ------Martha

>

> Note: When I was a child and had an ear infection, my father was a

dr and

> would immediately put Auralgan (sp?) in each ear. This always

happened

> at night, and he always sent me to ENT the following day. Now that

's

> drums are closed, we're started using it for pain (it doesn't cure

anything)

> when we first suspect it. Works wonders - as long as you don't use

it if

> there are tubes or any other opening. I won't be without the stuff!

>

>

>

>

[Guest guest]

,

I'm sorry, but I've forgotten. Where do you live? I could know of

responsive ENTs if you're in the Boston area or St. Louis - even New

Orleans where members of my family practice (not that they are the most

responsive, but over the years they have learned to trust Andy and me,

too). They're also in university settings and could have contacts.

If it's possible, too, it might help to have someone with you at

appointments until the " trust " issue is established (and I'm talking about

the drs' trust of you, not yours of them). Again, I had assumed that having

Perkins' staff with me would be the magic bullet. It wasn't at first, but at

least I knew that I wasn't alone and just nuts. My suspicion is that the

more nagging from more sources can only help --- until you meet a real

jerk like the dr who said 's ear was fine only to have it blow hours

later. At any rate, there can be power in numbers. At 's first visit to

Jane O'Brien in Boston, Andy, , and I were there but so was Pam

and 's teacher. Nothing was solved but taking us seriously

probably began then.

Martha

[Guest guest]

Hi Martha,

It is amazing reliving 's ear troubles! I can only add to you,

and others, that Martha is SO right--getting the ENT and other docs to truly

believe and understand the early behaviors and what they might consider just

" bad behavior " , as a signal that something is brewing (or brewed, as it were) in

the ears is SO HARD!! Once they get it, you've got them on your side, but the

idea that you have to fight so hard for this is incredible. Having seen

suffer (as well as other CHARGE kids) and the doctors not listening is so very

difficult.

On a brighter note, Martha, did you hear about the art auction? Did you hear

how much 's drawing went for????? Laurie and I were bidding against and

then with each other and we were so blown out of the water with the rest of the

bidding!!! If you haven't heard, let me know. (And if you want to share with

this group!).

xo pam

[Guest guest]

By all means share with the group? What the devil happened? Except for

my contact with Eliot, I haven't heard from a soul in ages! What auction???

And Pam, I'm still nutty over the move, etc. and want to write to on

the list about adult issues, etc. to see what others know, don't know. I've

always tried to protect our kids while also letting them fly (oh, and how

continues to fly --- shall write about that later). My hunch is that I

have to come to grips with letting do essentially what Andy and I

knew to allow E.; it's just different. But, God, it's hard and is driving me

batty. Just wait until you see how I shake - but I do so with great humor in

large part due to you and Laurie and my hatred of planes...

This last paragraph was most off subject; I guess this was my venting

moment. However, I've made a huge pot of split pea soup which seems

to be odd southern comfort food, so I'm heading downstairs.

Do tell all about the auction. Where was it? Everything.

Much love --- Martha

[Guest guest]

Martha,

Well, Thursday was the Moulton/Eliot Art show--the one that happens every year.

Also, every year, there are art pieces done by the seniors that are put up for

a Silent Auction. (Really, no one has told you about this? how weird). They

are framed beautifully, and with the other stuff, all is hung in rotunda in the

Howe Building (the one with the museum and the pool). There is a small

reception, jazz by a former staff and his band, and everyone is dressed up.

So.... The seniors this year, include our own, the lovely Miss Kate. She drew a

FABULOUS self-portrait that was in most high demand. It is black and white and

framed wonderfully. Well, the high bid was $350.00!!!! Hers was the highest

and had the hottest bidding!! Laurie and I were planning to share it and then

give it to you for her graduation gift--well, we were blown out of the water!!

(Hopefully, we can " commission " one from her; I am thinking of holding my candy

bowl as a threat/bribe for her!!).

Anyway, that is my story!!! I an not sure who made the high bid--that part I

did not get and I was tied up all day Friday, so could not find out. Surely,

will be in touch!! I am hoping you get to see her work--it is amazing

and so perfectly HER--understated yet most wonderful!

I am in the middle of a report that must get done, so I will stop here, but will

respond later or tomorrow to the rest of your message.

xo

pam

[Guest guest]

Oh, I did not realize I was responding to the whole group!haha, sorry for my

gushing about our Miss Kate, but I am soooo proud of her!

pam

[Guest guest]

M,

I am sure you will get to see it when you come for April Break--we'll find out

who ended up with it and have a viewing!! And...hopefully, we can have her

re-create it!!

good night.

pam

[Guest guest]

My daughter, , gets a nebulized IV antibiotic for 21 days for sinus

infections - we started this treatment when she has pseudonomous (or however you

spell it!) in her nose. I'm not sure if it is effective for ear infections -

but it kept us out of the hospital for IV antibiotics.

Lori Myers

-------------- Original message --------------

>

> -

> No answers for you -- just so sorry for Carmen's discomfort.

>

> Michele W

> Aubrie's mom

>

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca, or

email

> info@....

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information

> will be available at www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Martha,

I live in Ann Arbor, Michigan--lots of great docs are here at the U

of M where Carmen is followed. We were at the ER last night for

dehydration and there is in fact fluid behind her ear drum. So,

first thing tomorrow, I'll be on the phone to get this resolved--for

this time anyway. Thanks again for your help!!

> ,

> I'm sorry, but I've forgotten. Where do you live? I could know

of

> responsive ENTs if you're in the Boston area or St. Louis - even

New

> Orleans where members of my family practice (not that they are the

most

> responsive, but over the years they have learned to trust Andy and

me,

> too). They're also in university settings and could have

contacts.

>

> If it's possible, too, it might help to have someone with you at

> appointments until the " trust " issue is established (and I'm

talking about

> the drs' trust of you, not yours of them). Again, I had assumed

that having

> Perkins' staff with me would be the magic bullet. It wasn't at

first, but at

> least I knew that I wasn't alone and just nuts. My suspicion is

that the

> more nagging from more sources can only help --- until you meet a

real

> jerk like the dr who said 's ear was fine only to have it blow

hours

> later. At any rate, there can be power in numbers. At 's

first visit to

> Jane O'Brien in Boston, Andy, , and I were there but so was

Pam

> and 's teacher. Nothing was solved but taking us

seriously

> probably began then.

>

> Martha

>

>

>

>

[Guest guest]

Lori, This is a great option--thanks for sharing!

> My daughter, , gets a nebulized IV antibiotic for 21 days for

sinus infections - we started this treatment when she has

pseudonomous (or however you spell it!) in her nose. I'm not sure if

it is effective for ear infections - but it kept us out of the

hospital for IV antibiotics.

>

> Lori Myers

>

> -------------- Original message --------------

>

> >

> > -

> > No answers for you -- just so sorry for Carmen's discomfort.

> >

> > Michele W

> > Aubrie's mom

> >

> >

> >

> >

> >

> > Membership of this email support groups does not constitute

membership in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

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

> > please contact marion@c... or visit

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

Syndrome Canada

> > information and membership, please visit

http://www.chargesyndrome.ca, or email

> > info@c...

> > 7th International

> > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24,

2005. Information

> > will be available at www.chargesyndrome.org or by calling 1-800-

442-7604.

> >

[Guest guest]

I'm glad you gushed to us all cuz it was so fun to hear!!!

Michele W

pam.ryan@... wrote:

> Oh, I did not realize I was responding to the whole group!haha, sorry

> for my gushing about our Miss Kate, but I am soooo proud of her!

> pam

>

[Guest guest]

-

Is Tim Hartshorne at U of M?? I know he's in Michigan. If so, even if

he hasn't had these same ear issues with , maybe he could be an

outside reputable influence to the dr that can convince him that your

little CHARGE baby can have things going on that are not as the ENT

expects it. And that others with CHARGE have had this experience...

etc. I know that sometimes drs roll their eyes in dread when we start a

sentence with " on our Internet group... " but you can let him know that

you are involved with a large CHARGE family and know of specific

examples of children having the same situation as Carmen. Of course,

you wouldn't expect any one dr to have had that same experience because

our kids are different and far spread, but you can both learn from the

experience you have learned from the others with CHARGE. I hope that

makes sense!

Michele W

wrote:

>

> Martha,

>

> I live in Ann Arbor, Michigan--lots of great docs are here at the U

> of M where Carmen is followed. We were at the ER last night for

> dehydration and there is in fact fluid behind her ear drum. So,

> first thing tomorrow, I'll be on the phone to get this resolved--for

> this time anyway. Thanks again for your help!!

[Guest guest]

Michele,

tee hee

pam

[Guest guest]

,

I agree with Michele-as usual. Tim Hartshorne is a professional who is also

a parent. I might be speaking out of turn but if I remember right was

having some behavior issues and they were insisting it had to do with his ears

but doctors were saying no. Come to find out there was a foreign object like

a small bead pressing on 's ear drum. I think it was hidden by wax or

something. Once that was removed his behaviors decreased. Again, Tim and his

wife are professionals we all can learn from and doctors didn't even

believe them.. I also think he is at the U of M.

Bonnie, Mom to Kris 22 Patty CHARGE 20, and wife to