Re: Thanks for the welcome

[Guest guest]

Tristan-

My daughter was diagnosed with a bi-lateral moderate to severe (40 to 60

dbl) hearing loss at age three. She had a very serious bout with a double

ear infection that was resistant to antibiotics and poorly managed medically.

We finally got her into an ENT's office, and he immediately scheduled her for

tubes. After the surgery, he recommended a hearing test, which indicated a

problem. We then did two sedated ABR's. a CAT scan, an othmalogical workup,

bloodwork, etc. She went through the tests just fine (thank God) and we can

only

surmise that it was the infection that caused the loss. She is now eight, and

has not had any progression of loss, for which we are thankful! I didn't see

your original post, but it sounds like they do not know the exact cause of

Blakes loss either, right? It can be incredibly frustrating not to know for

certain, but there is some relief each time a possible cause is ruled out- in

our

case we were worried about Ushers, a tumor, etc. All of my daughters

symptoms arose during her illness; she regressed verbally, developed balance

problems, etc. All along we've known it was the infection, but there is still

that

'what if that wasn't the cause' question in the back of our minds.... Just keep

in mind they may not discover the cause, at least for now, but someday they

might . Gl with Blakes tests- we all know what you're going through! Tc-

, mon to Tori, mod bilateral loss, eight years old and starting to get very

lippy! (All these years of speech are paying of...)

[Guest guest]

<<I also asked about getting a CT scan for her, but he won't do it

until she's older. He wouldn't even consider doing a

sedated one. We are on our second ENT in almost 2

years and I'm just not sure about him>>

Refusing to do a CT scan is a bit surprising to me. I can understand some

doctors' reluctance to do the blood work right away as they are often concerned

about the bottom line and being able to justify tests which can be delayed. Some

conditions, though, such as LVAS (aka EVAS, enlarged vestibular aqueduct

syndrome), should be discovered or ruled out as early as possible as there are

precautions you would want to take to avoid further loss.

I think many of us have learned by trial and error to go with our gut on these

things. I know the money becomes a huge issue but if you're uncomfortable with

this ENT, I'm guessing you have good reason. The first ENT we were referred to

was " the man " in our area, too, according to many people. On our first visit,

he peeked in my then-4-year-old's ears (without even saying hello to him

first!), turned to me and said " Deaf people can become great artists because

they're so visual. "

Need I mention it was also our LAST visit?

Carol - mom to , 7.5, mod to profound, and a better drummer, mathematician,

and fiction writer than artist, thank you very much!

[Guest guest]

Welcome to the group, Robyn.

Glad to have you with us!

Best,

Abby

 

I first heard of IE about 10 years ago and went through a workshop put on by my local hospital.  I had good results when I was following the program and exercising each day.  Life is never easy, and the curveballs started coming.  I want to get back on track with the IE and have been looking for a support group as I have moved from the one I had.  I am excited to get back to listening to my body and eating the way it wants.

 

I thank you for letting me join the group and look forward to getting myself back on the IE track.

 

Respectfully,

Robin

[Guest guest]

Welcome to the group, Robyn.

Glad to have you with us!

Best,

Abby

 

I first heard of IE about 10 years ago and went through a workshop put on by my local hospital.  I had good results when I was following the program and exercising each day.  Life is never easy, and the curveballs started coming.  I want to get back on track with the IE and have been looking for a support group as I have moved from the one I had.  I am excited to get back to listening to my body and eating the way it wants.

 

I thank you for letting me join the group and look forward to getting myself back on the IE track.

 

Respectfully,

Robin