Re: son just diagnosed with a cholesteatoma

[Guest guest]

,

I'm so sorry to hear about your son's diagnosis. My 4 year old had eye surgery over the summer so I understand how scary it can be when your little ones have to have something like this done. I was much older when I was diagnosed but it's always scary for anyone.

hugs,

~:~~:~

Mommy to 3 great kids

& wife to a very brave cop!

Caffeine Inspirations

Email Me!

-- son just diagnosed with a cholesteatoma

Hello! My son Sam is 4 years old and was just diagnosed with a cholesteatoma. He was at the ENT on Friday 2 weeks after he had tubes placed in, and the DR informed us of the cholesteatoma. He has alot of bleeding and drainage from he ear, after the check-up is this normal? I am getting a second opinion from a Pediatric ENT this coming Friday the 20th. I am taking him to Children's Hospital of Pittsburgh. Anyone have any experience with any Dr.'s from Children's Hospital In Pittsburgh? I would like to hear from anyone that has. I looking forward to hearing from anyone who can, give me some advise.Thanks so much!

[Guest guest]

-Thanks so much! I need all the hugs i can get right now!

-- In cholesteatoma , " TiffnMike " <tiffnmike@h...>

wrote:

> ,

> I'm so sorry to hear about your son's diagnosis. My 4 year old

had eye

> surgery over the summer so I understand how scary it can be when

your little

> ones have to have something like this done. I was much older when

I was

> diagnosed but it's always scary for anyone.

> hugs,

>

> ~:~~:~

> Mommy to 3 great kids

> & wife to a very brave cop!

> Caffeine Inspirations

> Email Me!

>

>

> -- son just diagnosed with a cholesteatoma

>

> Hello! My son Sam is 4 years old and was just diagnosed with a

> cholesteatoma. He was at the ENT on Friday 2 weeks after he had

> tubes placed in, and the DR informed us of the cholesteatoma. He

> has alot of bleeding and drainage from he ear, after the check-up

is

> this normal? I am getting a second opinion from a Pediatric ENT

> this coming Friday the 20th. I am taking him to Children's

Hospital

> of Pittsburgh. Anyone have any experience with any Dr.'s from

> Children's Hospital In Pittsburgh? I would like to hear from

anyone

> that has. I looking forward to hearing from anyone who can, give

me

> some advise.

> Thanks so much!

>

>

>

>

>

[Guest guest]

Hi - my daughter Chelsy had 5 hour surgery for removal of a massive c-toma at the age of 4. Today she is 10 1/2 and has been tumor-free for six years. She had back-to-back ear infections (and chewed her fingers until they were bleeding) which is how the tumor was eventually diagnosed; a CT scan confirmed it. She went through a lot; surgery to put tubes in, 2 CT scans (one aborted because the meds. that were supposed to make her calm enough to lie still made her hyper instead); the CT scan that worked was awful for her; then the surgery; she rebounded pretty quickly after the surgery; we spent the night in the hospital and she left with a huge bandage around her head. She was sleeping a lot the first few days but was more or less back to her self in 4 days; on the 5th day she had a check-up and the bandage was removed. Today you can hardly see the scar. The damage from the c-toma was awful. It totally eradicated all hearing bones and half of the inner ear drum. She is now hearing impaired and started kindergarten with a hearing aid. Every year since is a new adjustment with the impairment. She has check-ups every six months for a reoccurrence check. Constructive surgery has been put off until she's 12 - her surgeon her in Chicago believes he might be able to reconstruct a bone or two and it "could" eliminate the use of her hearing aid or it could not. We'll see.

So hang in there - kids are so much more resilient that adults. My daughter has also gone through the suctioning out of wax every six months - the pocket created by the tumor has to be kept cleared out.

Once your son has the surgery, things should look brighter. We're all pulling for you. My daughter has been writing to other kids her age on this website who have had the same experience. Maybe Sam would enjoy that.

Caryn

Caryn L. Gleixner Tabet DiVito & Rothstein LLC (312) 762-9473

This e-mail/internet message may contain material and/or information that is privileged, confidential and/or attorney work product and which is exempt from disclosure. It is for the sole use of the intended recipient. Any review, reliance or distribution by others or forwarding without express permission is strictly prohibited. If you are not the intended recipient, please contact the sender immediately and delete all copies, and do not forward or use this information in any way. Thank you.

son just diagnosed with a cholesteatoma> > Hello! My son Sam is 4 years old and was just diagnosed with a > cholesteatoma. He was at the ENT on Friday 2 weeks after he had > tubes placed in, and the DR informed us of the cholesteatoma. He > has alot of bleeding and drainage from he ear, after the check-up is > this normal? I am getting a second opinion from a Pediatric ENT > this coming Friday the 20th. I am taking him to Children's Hospital > of Pittsburgh. Anyone have any experience with any Dr.'s from > Children's Hospital In Pittsburgh? I would like to hear from anyone > that has. I looking forward to hearing from anyone who can, give me > some advise.> Thanks so much!> > > > >

[Guest guest]

Wow! I am afraid of what the damage has do to his inner ear. They

can't do a Ct-Scan until probably after all of his infection is

totally clear. He goes back Monday then again on 1/3, and hopefully

then they can get the scan with an accurate reading, which they are

hoping to do. Sam, would love it if he got a letter from Chelsy. He

is 4 and will be 5 this May 11th and I am really debating on sending

him to Kindergaten, because he really needs alot of speech therapy.

I just can't believe all of this, especially when I took him for

repeted visits to our family practioner. I feel like I should or

could have done more. This summer we made a trip to the Dr, because

his ear smelled so bad, I couldn't even walk in his room, without

ready to throw up from the bad stench. The Dr. said just swimmers

ear, which lasted for a month and we even went back for 2 follow

ups. The Dr at Children's informed me it was more than likely from

the c-toma. I just hope and pray I found the best Dr's in our area

now. Thanks so much for the support.

-- In cholesteatoma , " Caryn Gleixner "

<cgleixner@t...> wrote:

> Hi - my daughter Chelsy had 5 hour surgery for removal of

a massive c-toma at the age of 4. Today she is 10 1/2 and has been

tumor-free for six years. She had back-to-back ear infections (and

chewed her fingers until they were bleeding) which is how the tumor

was eventually diagnosed; a CT scan confirmed it. She went through

a lot; surgery to put tubes in, 2 CT scans (one aborted because the

meds. that were supposed to make her calm enough to lie still made

her hyper instead); the CT scan that worked was awful for her; then

the surgery; she rebounded pretty quickly after the surgery; we

spent the night in the hospital and she left with a huge bandage

around her head. She was sleeping a lot the first few days but was

more or less back to her self in 4 days; on the 5th day she had a

check-up and the bandage was removed. Today you can hardly see the

scar. The damage from the c-toma was awful. It totally eradicated

all hearing bones and half of the inner ear drum. She is now

hearing impaired and started kindergarten with a hearing aid. Every

year since is a new adjustment with the impairment. She has check-

ups every six months for a reoccurrence check. Constructive surgery

has been put off until she's 12 - her surgeon her in Chicago

believes he might be able to reconstruct a bone or two and

it " could " eliminate the use of her hearing aid or it could not.

We'll see.

>

> So hang in there - kids are so much more resilient that adults.

My daughter has also gone through the suctioning out of wax every

six months - the pocket created by the tumor has to be kept cleared

out.

>

> Once your son has the surgery, things should look brighter. We're

all pulling for you. My daughter has been writing to other kids her

age on this website who have had the same experience. Maybe Sam

would enjoy that.

>

> Caryn

>

>

> Caryn L. Gleixner

> Tabet DiVito & Rothstein LLC

> (312) 762-9473

>

> This e-mail/internet message may contain material and/or

information that is privileged, confidential and/or attorney work

product and which is exempt from disclosure. It is for the sole use

of the intended recipient. Any review, reliance or distribution by

others or forwarding without express permission is strictly

prohibited. If you are not the intended recipient, please contact

the sender immediately and delete all copies, and do not forward or

use this information in any way. Thank you.

>

> son just diagnosed with a cholesteatoma

> >

> > Hello! My son Sam is 4 years old and was just diagnosed with a

> > cholesteatoma. He was at the ENT on Friday 2 weeks after he had

> > tubes placed in, and the DR informed us of the cholesteatoma.

He

> > has alot of bleeding and drainage from he ear, after the check-

up

> is

> > this normal? I am getting a second opinion from a Pediatric ENT

> > this coming Friday the 20th. I am taking him to Children's

> Hospital

> > of Pittsburgh. Anyone have any experience with any Dr.'s from

> > Children's Hospital In Pittsburgh? I would like to hear from

> anyone

> > that has. I looking forward to hearing from anyone who can, give

> me

> > some advise.

> > Thanks so much!

> >

> >

> >

> >

> >

[Guest guest]

,

Chelsy was lucky - she didn't have any speech problems (she started kindergarten with the other kids). At 4 its difficult enough for toddler to hold still under normal conditions let alone for a CT Scan. For her second scan, they gave her ketamine, a tranquilizer and they also put her under lightly. That was horrible - she was catatonic for the whole thing, and then she still had to come out of a recovery-condition.

She is really into writing letters now; besides the penpals she has from this website, she is also a writer for her school paper. I've forwarded your email address home so she can access it. She'd love to write to Sam (she also is a big sister to her a younger hearing impaired child in the third grade - not a c-toma-related hearing loss tho).

There's no way you could have foreseen this. Out of six doctors in the practice Chelsy goes to, only one was "on my side". She had back-to-back ear infections for nearly 7 1/2 months. I pushed and pushed for a referral to a pediatric ENT - the one doctor finally backed me up. It was the pediatric ENT who saw the "bulge" when she looked in her ear for a possible surgery for tubes and confirm it when she did the surgery for tubal insertion - she didn't bother with her ear that had the c-toma obviously. Unfortunately, the only way for a parent to help a child through this is by being strong for the child and not showing fear/concern, etc. - I also drank A TON OF COFFEE.

I'll have Chels drop Sam a line this evening after her holiday hair appt.

Caryn

Caryn L. Gleixner Tabet DiVito & Rothstein LLC (312) 762-9473

This e-mail/internet message may contain material and/or information that is privileged, confidential and/or attorney work product and which is exempt from disclosure. It is for the sole use of the intended recipient. Any review, reliance or distribution by others or forwarding without express permission is strictly prohibited. If you are not the intended recipient, please contact the sender immediately and delete all copies, and do not forward or use this information in any way. Thank you.

son just diagnosed with a cholesteatoma> > > > Hello! My son Sam is 4 years old and was just diagnosed with a > > cholesteatoma. He was at the ENT on Friday 2 weeks after he had > > tubes placed in, and the DR informed us of the cholesteatoma. He > > has alot of bleeding and drainage from he ear, after the check-up > is > > this normal? I am getting a second opinion from a Pediatric ENT > > this coming Friday the 20th. I am taking him to Children's > Hospital > > of Pittsburgh. Anyone have any experience with any Dr.'s from > > Children's Hospital In Pittsburgh? I would like to hear from > anyone > > that has. I looking forward to hearing from anyone who can, give > me > > some advise.> > Thanks so much!> > > > > > > > > >