Conference moira::parenting_v3

    Well, Bob my thoughts are with you and Devon. I think you are going
    through the most difficult thing that a parent can go through - the not
    knowing and not being able to answer those "why" questions for youself
    and for Devon. It has got to be even more difficult because it is the 
    loss of one of our senses (so often taken for granted). 
    
    No, I have never experienced the same type of medical problem but had
    gone through a severe fever (104 degrees for 4 days) and showing signs
    of spinal menengitis. We have never felt so helpless - and the waiting
    really gets to you!!! Hang in there. Give Devon lots of love - he's got
    to be scared himself. Don't be hard on yourself, especially if Devon
    can't understand/hear you. He's old enough to need honest answers (what
    ones you can provide) and don't forget the "I just don't know; we will
    have to wait and see" is the most honest answer you can give him when 
    you can't answer his questions.
    
    Hope it all works out soon!!
    
    Andrea
                         

    My prayers are with you and your family, Bob.
    
    much love,
    --bonnie

    Bob,
    
        I have dealed a lot about hearing loss in a young child.  One of
        my twin boy is born with profound hearing loss on both his ears.
        He has an average 95db loss on both ears.  I have gone through the
        medical treatment and the educational arrangement to deal with
        this problem.  Certainly there were a lot of frustration.  The 
        most difficult one is the UNCERTAINTY.  Almost most the
        professional people will not give you an answer.  At that time,
        my audiologist in New Hampshire refused to tell me exactly what
        John could hear.  I finally got fed up and decided to do my
        own research to get the best services for my son.  My son just
        turned 5 year old and has been going to The Clarke School for 
        the Deaf in Northampton MA since he was 3.  The school there has
        dealed with profoundly hearing loss children for over 120 years.
        They have a lot experience to test the hearing on young children.
        So I got a fairly clear audigram from their testing.  They also
        know very well about the implication of deafness in education.
        I found that they know much more than the hospital doctors and
        audiologists.  I would suggest you check with similar type of
        school in Canada.  At least I know Montreal School for the Deaf
        in Montreal is one of the best school recommended to me.
        In the oral education program for the young hearing-impaired
        children,  Dr Daniel Ling's methodology for teaching speech has
        been used everywhere.  Dr. Daniel Ling was the Principal of that
        school before and he is still leading some research projects there.
        I do not have their telephone number with me.  But you can always
        find out by yourself.  I am sure that they will give a lot more
        information than the hospital because they really deal the kids
        with the hearing loss.  They might be able to do a more accurate
        hearing test on your son.  
    
                                                    Wendy
    
    

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================================================================================
Note 186.8               Sudden hearing loss in a child                   8 of 8
OTOU01::FRASER "HURRY UP!!! ... and wait ..."        91 lines  12-NOV-1990 10:32
                                -< update time >-
--------------------------------------------------------------------------------
    Hi world,

    I am returning from the silence.  First, thank-you to those of you who
    have either replied or sent me mail.  *I* have had a very rough time of
    it it.  The words do help.  and so, what has happened...

    Me first.  I tried to work on the 25th but I was going though such big
    emotional swings that one moment I would be fine, and the next moment I
    would have my head down on my desk crying...  Not good when you are
    supposed to be a resident at a customer site...  So I took the rest of
    the week off.  I tried again on Monday (the 29th).  It just was not
    working so I took the week off as vacation.  Since I came back I have
    been running flat out, so no update here.  Since today is a federal
    government holiday, I now have the time to do an update.

    On the 25th it was off to the hearing aid vendor to get ear molds that
    would work with the loner power aid.  In addition to ordering "proper
    molds", they made up a set of temporary molds of some bright green
    stuff that would at least last until the real molds came it.  In
    addition they have lent us a second power aid plus a couple of boots to
    hook the aid up to both the FM system that Devon has at school and the
    system we have at home.  The Ottawa-Carleton school board came up with
    a set of boots for the first aid (the aids are different models).  

    On Friday it was back to the children's hospital to have both aids and
    FM systems "tuned up".  Audiology run Devon through the full set of
    test when they were done.  Because so little hearing is left to work
    with, only about 10db, they were only able to able to bring things up
    to about 40db down.  Even doing that they figure that the sounds are
    being distorted by the aids clipping sounds above about 120db.  Think
    about it -- 120db into each ear....  The result - Devon is hearing
    "sounds" of some sort but has no comprehension of what they are.  He
    scored *0* on the spoken comprehension test.  He can no longer walk to
    school by himself.  He may "hear" a truck, but he would have no idea
    that what he was hearing was a truck...  As a result the school has
    found an older kid to walk him to and from school.

    On the weekend I played about one million games of "go fish" with him. 
    I learned two things.  He can lip read very well.  He was getting about
    75% of what I said regardless of whether he had the aids on or not. 
    Nobody realised before that he could do this.  The second thing I
    learned was that he cheats!!!!  If I got up for a moment, when I came
    back he *knew* what every face down card on the table was...

    In school he is really struggling.  The teacher feels that he is
    generally following what is going on if he has a direct line of sight
    to her face (he sits just off centre, front row).  That, combined with
    watching what the other kids are doing is helping him cope with the
    school situation.  I'm not sure that some of the kids in the room
    understand what has happened to him.  The week that I took off from
    work I walked him to school every morning.  Within about 15 seconds of
    arriving, he would be in the middle of a crowd of little boys.  Some
    would just stand there and look at him, and others would start talking
    a mile a minute.  All of them, including Devon, would soon be off doing
    what little boys do before the bell would ring.

    When we really what to make sure that he understands something, we have
    been writing notes for him, and then having him read them back to us. 
    I have to admit I am impressed with his reading.  When he does not know
    a word, he sounds it out, looks at you with a question mark on his
    face, and then continues.  This, combined with his lip reading, means
    that we have not had a total communication lapse with him.  His
    speaking has not changed, but may be a little softer generally, and a
    lot softer when he is unhappy or feeling low.  The really hard part is
    his 5 year old sister can not seem to understand that he is not mad at
    her or something, just that he can not hear her.  She has a great
    tendency to go stomping off to mom that Devon is "this or that" to her. 
    We have a small battle on our hands to get her to understand that he is
    not being mean to her.

    The hardest thing to get through was his first night at Beavers.  It
    was their Halloween party night.  He just did not want to go.  Those
    big green ear molds...  Seems that he was taking some heat at school
    about them.  Eventually we went on the grounds that I would stay.  When
    we got there, he would not go in until it was agreed that he did not
    have to join in, but that I would sit with him on the floor at the back
    of the room.  By the end of the hour he was right in the middle of
    things (as usual) - almost...

    Devon has been in for two weekly hearing tests since the 28th (for a
    total of 5 or 6 so far).  There has been some good news.  Both ears
    have shown some improvement at some (but not all or on both ears) low
    frequencies.  One ear is actually up to about 85db at 250 cps.  Is may
    not sound like much but it is significant!!!  All the blood tests are
    not in yet but nothing has shown on those that are back.

    That's it for now.  There is more but I have got to go get some work
    done!

    cheers,
    Bob
    

    Although there is not much I can do for you - tangibly I mean - I am
    "rooting for you".. Hang in there
    
    My thoughts and prayers are with you all

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================================================================================
Note 186.10              Sudden hearing loss in a child                 10 of 10
OTOU01::FRASER "HURRY UP!!! ... and wait ..."        69 lines   3-MAR-1991 13:08
                          -< a long over due update >-
--------------------------------------------------------------------------------
    Hi world,

    I promised someone a long time ago to post an update on Devon, so here
    it is.

    Generally things have gone "reasonably well".  Devon was getting a full
    hearing test every week from the time he lost his hearing up until the
    end of December, and is now only going in for a full test once a month.

    On a week by week basis there was a general drift upwards of his
    hearing response, but always within the margin of error from the
    previous weeks test.

    By about the second week of December, Devon had regained almost all the
    hearing he had lost on his left (bad) ear.  He did not fair at well on
    his right (good?, better of the two) ear.  On the right ear he has
    suffered a loss of up to 50 db at different frequencies.  The result of
    this is that both ears now have about the same frequency response. 
    There has not been any change since that time.  By the end of December,
    the Children's Hospital felt that he had regained as much of the loss
    as he would, and removed him from the steroids.  i.e., they DO NOT
    expect his hearing to improve past this point.  What he now has is the
    best he will ever have.

    While on the steroids, Devon gained about a third again of his body
    weight.  He ended up looking like his skin was going to split!  Once
    off the little white pills, he began to loose the extra weight, and is
    now almost back to his pre-loss level.

    OK, what does this mean?  

    It means he is back on his own BTE aids.  With the aids on, his
    comprehension started out at about 85%, and on his last test was up to
    about 90%-95%.  Before his lost, he was scoring 100% with the aids on.

    He how has a full time aid in the school classroom to assist him in
    understanding what the teacher is talking about.  While his teacher was
    just fantastic after he lost the hearing, she was having to really do
    everything twice, once for the class in general, and once again working
    with just Devon to make sure he understood what he was to do.  For quit
    a while he really did not have a clue...  While the x2 method of
    teaching was getting the required information to Devon, it was starting
    to have an impact on the classroom in general.  So with very little
    effort (but LOTS of written documentation from just about anybody who
    had anything to do with him after the hearing loss), the school board
    supplied a full time aid to support just him and allow the teacher to
    get back to doing her job.  School is now back to normal.

    The one BIG loss that has been noted is in his hearing WITHOUT the aids
    on.  Most of the time he has almost no hearing, or so it seems.  If you
    speak to him sans aids, you have to speak right into his ear from a 2-3
    inch distance.  And then a lot of the time he will ask you to repeat
    it.  It may not sound good, but believe me ANY hearing is VERY VERY
    good.  If there is anything to work with, it CAN and IS worked for
    everything it can!

    So overall, life is back to "normal", or as much as it can.  Hopefully
    we will not have to go through this again, for both ours, but mostly
    Devons sake...  It was very rough watching him struggle with the loss,
    and to know what he had loss, and the not knowing if it would
    improve...  But it did.  At least until next time...and nobody knows if
    it will.

    As a last point, we still have no idea as to what caused the sudden
    loss.  And we may never know...

    cheers,
    Bob

    Bob,
    
         Thanks for the update on Devon.  My 5 year old daughter 
    recently experienced a slight hearing loss in both ears due
    to fluid buildup that wouldn't resolve itself with antibiotics.
    I thought of your situation and was wondering how it was going.
    
         A regimen of prednisone finally did the trick and she 
    appears to be back to normal. We'll find out for sure tomorrow.
    
    Good luck, Bob.
    
    Jodi-
    

         Just me again.  My son went for his check-up two days ago and I
    had some good news and some sort of disturbing news.  He had managed to
    gain weight.  He was up to 6lbs. 14 1/2oz. which was good for him since
    he was only 5lbs. 5oz. 3 weeks ago.  But, they aren't sure that he can
    hear.  He's 10 1/2 weeks old and was born 5-6 weeks early.  He said
    that he would check again in 3 weeks but he didn't seem to respond to
    sound.  Me, I guess I can't tell.  Sometimes he seems to and a lot of
    times he doesn't.  Has anyone else out there had this happen to them.
    I am so worried and feel so badly for him already if he can't hear.  I
    have tried standing behind him and clapping my hands loudly and
    sometimes he blinks and other times he doesn't.  The doctor said that
    he should be able to hear me walk into the room and I know that there
    is no way he hears that but then I wouldn't hear it if I were sleeping
    and someone walked into the room so why would he?  So now I am driving
    myself nuts trying to get him to respond to sound.  How can you really
    know if they can hear or not?  What if they hear if but just don't
    react to the sound?  His pedi did notice that he had a little fluid in
    one of his ears but no redness.  He gave me antibiotic anyway just in
    case.  Could this affect it too?  I didn't know that babies born at
    under 5 1/2 lbs were at a greater risk for hearing problems.  Does
    anyone know what the hearing tests consist of.  I am almost certain
    that he will have to have them done.  In the meantime I am beside
    myself with worry, depression, and sadness that he may not be able to
    hear all of the wonderful sounds that I can hear.  It just doesn't seem
    fair.  Has this happened to anyone else?
    
    
                         ---Sue

    Sue,  This kinda thing happened to a friend of mine.  Her little girl
    was born full term but only weighed 5 lbs 10 oz and was only 5 lbs 5 
    oz when she came home from the hospital.  Since then her daughter has
    had a substantial amount of fluid build up in her ear cannals and has
    hd to have tubes put in her ears.  She had to go through all the
    hearing tests that they do on infants and young children, and since
    they put the tubes in she hears and talks fine.  She is 2 years old
    know.
    
    My friend told me that the hearing test was done in a sound proof room
    and the doctor would make high pitched and low pitched sounds and
    checked deep inside her ear cannals to see how deep the fluid was.  My
    friend took her to a specialiest at Leominster Hospital were she lives. 
    Like you she was very worried about her daughter not being able to hear
    or speak.  The poor kid was on antibiotics from the time she was 3
    weeks old and she is still on them until the specialist takes her off
    them.
    
    I hope everything works out for the best, good luck.
    
    
    Liz

    When Daniel was a couple of months old, my husband drove me NUTS!! He
    INSISTED that Daniel was deaf. I have a severe hearing problem that was
    passed down from my Mom, so we knew that any children we had were at
    risk. Before we took Daniel home from the hospital, he was registered
    as a "high risk child". This was done by the nurse that discharged him.
    All this means, is when the time comes, we will be notified by a
    Massachusetts agency to bring him in for free testing and that testing
    will be done periodically.

    Getting back to when he was a newborn... my husband finally called the
    pedi to ask why Daniel would respond to things like the closing of the
    microwave oven, but would not respond to my husband when he would clap
    his hands behind Daniel. The pedi told him, that at this young age, the
    child does not realize that people expect him to respond to particular
    sounds. He was only responding when it was an automatic response.
    Nothing to worry about at this young age. Testing can only be done when
    the child can voluntarily respond to sounds. I still don't know at what
    age this should be done.

    At ten weeks, according to MY pedi, its nothing to be concerned about.
    YOUR pedi may not agree, so you'll have to ask HIM.

    FWIW
    Norma

    David was very unresponsive to sounds when he was an infant. 
    Unless it was so loud and so near that it produced a "startle"
    reflex, he didn't respond.  It wasn't until around 6 months that
    he seemed to realize that individual sounds had meaning and it
    wasn't all background noise.
    
    There is a hearing test that a baby can be given when it's *very*
    young.  It measures whether the ears are responding to a sound.  I
    have no idea how it works, but David had it at (as I recall) his
    3-month checkup.  
    
    A schoolmate back home had a daughter who was born with severe
    hearing and sight problems.  She was fitted with very strong
    glasses and a very strong hearing aid when she was only a few
    months old, and she developed normally, with practically no need
    for special education or anything else.  She's now going to
    nursing school, getting good grades, and generally doing just
    fine. So even if your son does have a hearing loss, there's a lot
    they can do for it.  And the earlier they diagnose it, the better
    it is for the child's overall progress.
    
    And yes, fluid in the ears can be enough to cause almost total
    loss of hearing during the time the fluid is built up -- I've had
    it myself a time or two.  Of course during the school term when I
    was taking French phonics (required for graduation, only offered
    every other year, and I was a senior . . . )  But I digress.  
    
    Anyway, it must be rough for you, but I'm sure it will all work
    out all right.
    
    --bonnie
    

         --Norma,  I guess that's one of the things that had sort of been
    bugging me too was that he has responded to sounds in the past but not
    consistently.  Sometimes to slamming doors but not always.  Sometimes
    he would turn his head towards the rattle but not other times and
    sometimes he even seemed to turn toward our voices but not other times.  
    Most of the time he doesn't respond.  I was told that with loud noises
    he could just be responding to the vibrations from it.  I don't know
    but I was sort of worried but not really cause I just figured like your
    pedi said, he doesn't know that he is supposed to react.  He's really
    too young.  I'm glad that it has happened to someone else tho.  I
    figured it was just like following stuff with his eyes.  He does when
    HE feels like it not when I am "testing" him.
    
    
    
         ---Bonnie,  I am so glad that there are tests that you can
    actually have that will test the ear.  I was trying to figure out how
    in the world ANY person could figure out whether or not a baby that age
    could ACTUALLY be hearing or just ignoring the sound.  I can only hope
    that the sort of testing that your son had is available up here in the
    boonies.  If all they are going to do is to make loud noises and see if
    he reacts, I can keep doing that at home.  They have me so worried now
    and feeling so bad for the adorable little guy that I can't wait to go
    back to the doctor in 3 weeks so he can check again.  Thanks for
    sharing your experiences with me.

    Getting involved in this particular subject, prompted me to pursue
    information regarding infant hearing testing. 

    I just spoke to Alice Morrison from the Massachusetts Dept. of Public
    Health. They have an "Infant Hearing Program" which coordinates the
    testing I mentioned in a previous note.

    You may contact Alice at (617)727-5121 for more information.

    Good Luck!
    Norma

    From this and your other notes, you should buy a book called
    
    "The Premature Baby Book" by Helen Harrison.
    
    It has answers to most of these questions.  It does cover the hospital
    stay in depth but also "coming home" issues.  You should be able to
    find it at a childrens bookstore or any store that has extensive
    developmental books.
    
    The antibiotic Gentomycin is known to cause deafness in children if
    given in extensive doses.  My son had it as a newborn with no adverse
    effects so far.
    
    Good luck.
    
    cheers 
    jeff
    

    Thanks Jeff!!  I love to read and maybe if the bookstores around here
    don't have that book, perhaps they can order it.  They have been known
    to do that for people.
    
    
                             ---Sue.

    There is a hearing test that is given to newborns, and is really quite
    simple.  It was given to my 1 week old son when he was in the Neonatal
    Intensive Care Unit at Mass General, before being discharged.  I guess
    the doctors wanted to make sure he didn't have a hearing problem before
    he left.
    
    The technician attaches monitor cups (I don't know what the little
    dingies are called) to the baby's head.  You know, just like the sticky
    things they attach to your chest to monitor your heart.  Then put ear
    phones on the baby, and play different sounds over the ear phones. 
    They monitor the brain waves, and determine if the baby can hear.  The
    technician is trained to determine which brain waves indicate which
    sounds the baby can hear.  Simple really.
    

    My children were also i the Massachusetts High Risk Program. I did not
    wait for anyone to call ----- I contacted the Children's Hospital
    hearing and speech department to find out how young the child could be
    tested, and to make an appointment (you need to make in advance...)
    They were WONDERFUL, and it is amazing how young the child can be. Both
    of my boys are fine, by the way, and the program pays for the testing
    until they are three. Then, if needed, they will be in it longer.
    
    A funny story from this - I have a severe high frequency nerve
    deafness. During the testing the child was on my lap and were were put
    into a soundproof room. The audiologist cautioned me not to give the
    child any "cues" as to the responses to sound - they needed the child's
    own reactions to measure the hearing. When the test was completed, the
    audiologist commented that I certainly had not given my child any cues
    - they could tell from our reactions that the baby was hearing sounds
    that I was not !!!!
    
    Good luck, and do not worry. If the child is hearing impaired, there
    are many programs that can be used to help him/her develop normally.
    
    Leeann
     

    
    
    
    
    
    When Lauren was about 3 months, I thought she was deaf since she did not
    respond to many sounds.  I was running around the house sneaking up on
    her making all kinds of noise, clapping my hands over her head, etc. 
    Driving myself and my husband nuts.
    
    I took her to the pedi for a routine check up, and at the end I asked
    the fearful question "how do I know if she's deaf".  I told them how
    Lauren did not respond the way I thought she should and she also cried
    continuously (just her disposition).  Anyways, they had me hold her on
    my lap facing them, then they took out a bag with horns, rattles and
    other noise makers, and would make a noise with one of them.  What
    Lauren was supposed to do was turn toward the sound or cry from being
    startled.  Lauren just sat there looking straight ahead. 
    
    Well, I was sure after that she must be deaf.  We made an appointment
    with an audiologist in Manchester and they were able to tell what level
    her hearing was at -- it was normal.
    
    If I were you I would have my pedi recommend an audiologist and get the
    baby there for the testing. 

    Sue, I hope everything goes OK, and I can understand how worried you
    are.  
    
    My little girl was born two weeks early and weighed 5lb, and it's
    a good job that I didn't know about the "under 5.5lb = hearing
    problems" theory otherwise I'd have had one more thing to worry about. 
    Alison does not have (or has ever had) a hearing problem.  Also she has
    only had two (mild) ear infections in the whole of her two years (I've
    lost count of how many chest infections she's had, so don't think I've
    got off lightly!).  I know of several people who have had small 
    babies/preemies without hearing problems, so "less than 5.5lb" DOESN'T 
    automatically mean that the baby will have a hearing problem.
    
    When Alison was tiny (first two or three months?) she didn't react to
    sound very much - I'd have had no way of knowing if she'd heard me
    come in the room.  The only thing that she would do was startle at very 
    loud unusual noises.    
                                                    
    So - please don't assume that your baby must have a hearing problem
    because he was a preemie and doesn't appear to react to sounds - it
    aint necessarily so, but you are doing the right thing to get
    everything checked out.
    
    Good Luck
    
    - Janet

    Would it give you any reasurance to know that AJ was born several weeks
    early, weighed just barely 5 pounds?  Before his birth (the day he was
    born actually) I had an ultrasound and a non stress test.  The
    technician rang a loud dinner bell over my belly to see if he would
    give a reaction, he didn't.
    
    I've actually had his hearing tested on a regular basis since he was
    only a few months old.  He is followed by Dr. Hanson at Umass Medical
    in Worcester, and he does hearing tests as part of his routine visits
    *every time*.  He uses this method of both tones through speakers when
    they kids are really young, and later uses headphones.  THis is always
    followed by a graph drawing, they put these plug things in each ear and
    do something with a computerized machine that draws a line indicating
    how much the child can hear.  AJ's were almost flat before he had his
    tubes put in, the tubes have finally fallen out and he seems fine.
    
    The bottom line here is not so much the testing, as is the point that
    his hearing was never *that* impared, he was simply IGNORING me!
    
    Kids, ya got to love 'em!!
    Lyn

My nine month old son Patrick is a happy, healthy 9 month old child. Last week 
he was diagnosed as having severe to profound hearing loss in both ears.
Needless to say, this has been a shocking and extremely difficult experience so
far.

My mother in law noticed at 3 months that he wasn't responding the way a three
month old should. I didn't make a big deal out of it because he was so young and
I thought it might be a cognitive thing. However, by 5 months he hadn't improved
much, if any. At his 6 month pedi appt the doctor checked him out and wanted his
hearing tested. That's when the ear infections started. He has had four so far.
His hearing cannot be tested while his middle ear is clogged up so we had to
keep postponing the appt's. Finally, we made an appt to coincide when we thought
he would have fully recovered from his last ear infection, and that appt was 
last week.

He was seen by Audiologist Mark Matteson of Hannemann Rehab in Worcester. The 
test is called a Brainstem Evoked Hearing Response test, or brainstem for short.
This is the test mentioned in .16. He is given a sedative, chlorhydrate, to get
him to relax and go to sleep. They call this a 'cocktail'. After he is ready 
the audiologist attaches three electrodes to Patricks head, one in the middle
of the forehead, and one behind each ear. These plug into a portable PC which
are capturing the brain waves reponse to sounds, which are stimulated by three
sources. The first was a clicking sound, the second low frequency tones, both
were through a headset. The third uses a transducer placed behind each ear that
transmits sounds through the skull directly to the inner ear, bypassing the
eardrum and middle ear. This test tries to prove if the loss is in the outer or
middle ear .vs. the innert ear.

Patrick flunked all the tests with flying colors. Hearing response is measured 
as a threshold, a normal hearing person's threshold is 0dB. The maximum volume
a normal human being can bear is 140 dB which results in instantaneous hearing 
loss. Patricks threshold was at the limit of the machine, 95 dB for the clicks,
80 dB for the tones and 70 dB for the bone conduction. This clearly puts him in
the severe to profoundly deaf catagory.

However, we do not know how hard of hearing he really is. All we know is that 
his threshold is no better than 85 dB. Hearing is logarithmic, though, and there
is a lot of room between 85 dB and 140 dB. We conferred with our pediatrician
and he wanted more tests. He was examined by a local ENT, Dr. Oyer at Hannemann
Rehab, who concurred with the audiologists findings but agreed with me that
further testing is needed. 

The next steps are playing out in parallel. Next week, Patrick will be tested in
a booth, where they can test up to 140 dB. Hopefully, we can get some real 
numbers on a chart that will quantify his loss more accurately. The second week
of December he goes to Mass Eye and Ear for more testing and review by a
pediatric ENT doctor. 

So far, evereyone we have dealt with has been fantastic. I can't say enough good
things about Dr. Bream in Auburn, our pediatrician. He has gone out of his way
to ensure Patrick has all the resources available to him. Dr. Oyer and Dr. Bream
have pulled strings with the HMO (CMHC) to go out of the plan for more testing.
Of course, when we called the State about Early Intervention programs we got the
usual runaround, 'we'll call you in two weeks to make an appt' bull. We were
warned about this from several sources. I expect more problems in the future,
but at this point I'll give them their chance to prove me wrong.

We have just started on this long journey but there is hope that Patrick will be
able to hear, speak and function in this auditory world we live in. At this 
point we don't have enough information. Once we have a handle on his condition 
in real terms, we will be able to fully explore all of his options.

Hopefully this will be a learning experience we can all share.

Chris deHahn

A woman that I used to work with had a child with hearing loss.  I am
not sure, but I think a fairly severe hearing loss.  She actually transfered
within DEC to be nearer to a special school for her son.  He must be around
4 or 5 years old now.  I think she still works at DEC and if you'd like I 
can probably put her in touch with you--send me mail if you want & I'll do
some checking.

I hope that things will go well for your son.

Leslie

Any and all information will be warmly welcomed.

Thank you.

CdH

    When my daughter (Meredith) was born she was identified as a child
    thought to be at risk for hearing loss.  Recently we received a letter
    from the Commonwealth of Mass, Executive Office of Human Services,
    Department of Public Health which told us about the "Hearing Evaluation 
    Program for Infants and Toddlers".  The telephone number of this department 
    is 508-886-4711.  Ask to speak to Joyce Power or Greta Scully.  When
    you call this number, they'll give you a list of hospitals in your area
    where you can go for testing.  We were able to schedule an appointment
    for Meredith within 4 days.
    
    The overall program director is Alice T. Morrison.  Her phone number is
    given in note 457.13.  
    
    I'm just adding this note to let you know that I received immediate
    response from this department.  If calling the main number doesn't
    work, try the number given above.
    
    Maryann
           

    
    Not sure if this is any help but I was diagnosed with hearing
    loss as well when I was baby...I was so far behind other
    children and my speech was poor to say the least.
    
    Turns out my tonsils and grown into my ears...once they were
    removed....you probably can figure the rest of the story...
    
    I'm sure your dr has looked at every angle, but I thought I
    would share this with you in hopes that maybe something so
    simple might have been overlooked...
    
    Best of luck...
    Kristen

Thanks to all who wrote and called. There is a wealth of information right here
in DEC that I plan on exploiting to the fullest.

Patrick goes for booth testing on Tuesday, I'll post the results.

Have a great holiday,

CdH

It's been three weeks so I thought I would update Patrick's condition if anyone
is reading this and is interested.

Patrick was tested in a soundproof booth at Hahnemann Rehab in Worcester. He did
respond repeatedly to low frequencies at 90dB and above. This is enough hearing
to be able to teach him speech. The people at Hahnemann Rehab were absolutely
wonderful, especially Susan Rovezzi the staff audiologist. The test was done on
that day we had an ice storm in Central Mass...many people cancelled their appts
so we spent about 2.5 hours with the staff. I feel very comfortable with them as
Patricks teachers in the Early Intervention program.

The next battle was with the state. Since we live in Millbury the state wanted
to send us to Milford MA for EI. They do not have the program Patrick needs in
Milford, only speech therapy. We were ready for a big fight with the state 
Department of Public Health, when by some miracle, they came to their senses and
decided to send us to Worcester and thus Hahnemann Rehab, as the state contracts
Hahnemann for EI. If you're confused, so was I for a whole week until I finally
got someone to explain the whole process to me.

Since we had Open Enrollment at DEC, I was looking at the health plans and how
they would handle a child with Patrick's disability. We had been happy with
CMHC but now was the time to explore other alternatives. The folks at Tufts were 
by far the best to deal with. They had the answers to my very specific questions
and if they didn't I was referred to a supervisor. I had heard that Tufts will
pay for hearing aids for children and they confirmed it. They will pay up to
$1500/yr for hearing aids for children up to the age of 19. This is the only
health plan DEC offers that will. The parents of a hearing impaired child 
appealed to the director of Tufts and they won, thus everyone in Tufts gets the
benefit. That, and they were less $$/wk.

The next test was at Mass Eye and Ear in Boston, for a second opinion. Unfortu-
nately this was a very unpleasant experience which is beyond the scope of this
notesfile. Send mail for details. The bottom line was they confirmed his loss
but had better data than Worcester, his threshold is actually at 80dB at one
frequency.

Last Friday night we met a couple with a HI child, Ryan, who is 20 mos old. Ryan
has a loss at about the same level as Patrick, and wears two behind-the-ear HA's.
By far, this was the best therapy my wife and I have had to date. Ryan is doing
very well, he currently signs over 80 words and adds new ones at about a dozen a
week. He speaks about a half dozen of those words but the EI emphasis is on sign
at this time. He can speak fluently in sign with his parents and other signers.
Ryan has the strongest HA's available, they give him about 40dB of gain. What
this means is, Ryan can HEAR! In fact, last week his parents were signing a 
sound to him, and he shook his head and pointed to his ear. He was telling his
parents he could hear the sound, there was no need to sign it to him. This is
a 20 month old child. Needless to say, this gives us a lot more hope than we
previously had. I tried the HA on myself, the fidelity and non-directionality
was simply amazing. I thought it might sound like a cheap phone...not at all,
it was more like a table radio. This technology is preceeding very rapidly..only
a year ago the strongest HA's were the ones worn on the body.

Next month Patrick starts private EI in our home once a week, and we start group
EI at Hahnemann 1-2 times a week. The more people in this group we meet, the 
better I feel about Patrick's disability and the help WE will get in Worcester.
They are very active in the community and their fundraisers help children whos
parents cannot afford HA's get them. I am looking forward to being a very active
member of the group.

Chris deHahn

    Thanks Chris for the update on Patrick.
    
    Jodi-

Patrick had a big day today, he was fitted with hearing aids in both ears. These
are 'loaners' from Hahnemann Rehab, as they want to try several types over the 
next few months and determine the most appropriate ones before Tufts spends 
their money on them. The ones he has now are made by Miracle Ear and are the
strongest available today.

Patrick was tested first without the HA's, he did better than the last time he
was tested most likely because he has matured that much more in one month. 
When they put one HA on, though, the difference was dramatic. He gets about a
40 to 45dB gain from them, and he hears a LOT better. They have the HA's set to
roll off the high frequencies, so that he won't get too overloaded with sound.
Still, his hearing in that range improved 30 dB even with them set the way they
were. This gives us a lot of hope that he will be able to speak as the upper
mids and lower high frequencies are extremely important in speech recognition.
He heard and responded to speech, hand claps, warble tones by facial expression
and when he recognized the sound, a light was flashed and he responded to that. 
When the tone was applied subsequently, he looked at the light before it was
flashed, which is considered the proper response.

What was also encouraging is that when we had both of them on, he didn't seem to
mind a whole lot. He hates hats, or anything on his head..but he didn't tear
them out immediately like I thought he would. There's still time, though 8^).

Later in the week the State Early Intervention teacher visits, we start private
and group EI at Hahnemann, and we go to our first Parent-Infant group meeting.
So I guess this whole process started today. It's going to be a long road but
we have some wonderful professionals working with us and, after today, a glimpse
of what we have to work with. Nobody knows a child as well as the parents and my
gut tells me that Patrick is going to work as hard as we will to make the best 
of this situation.

I'll keep updating this note, because even if it doesn't apply to anybody today,
there's a chance someone may benefit from it in the future.

Chris

    
    Congratulations on Patrick's progress to date, Chris, and yes, 
    do keep us informed as the process evolves!
    
    Carol

    I know several successful professionals here at Digital who have
    hearing problems and use hearing aids.  Their speech is distinctive but
    they both communicate just fine.
    
    One is my group administrator.  He successfully keeps many balls in the
    air at the same time, deals with over 100 people on a regular basis,
    and keeps it all organized with a gentle sense of humor.  He enjoys
    going to parties and meeting new people.  He is very close to his
    family.
    
    Another is a software support person (is that title outdated?) in the
    Midwest.  He is VERY technical and successfully manages several big
    accounts.  He is one of the senior networking specialists in the field. 
    His hobby is wilderness canoing and he owns his home.
    
    These are two fine role models for your son.
    
    Laura

There are also many people who are *deaf* who do very well, both financially
and socially.  I have found that it is helpful to a hearing-impaired child 
to teach him/her both about the ways to communicate in the hearing culture 
(speech, writing) and in the hearing-impaired culture (sign language).
I am glad to see that some parents in this file believe so as well!

        Carol, who_was_very_involved_with_the_deaf_community_in_San_Diego

Like I said, this is a very polarized issue for both the hearing and deaf world,
especially when it comes to the subject of educating children.

There are four popular methods of teaching communication to HI people:

Sign
Cued Speech
Oral
Total Communication

American Sign Language is the official language of the deaf. Many feel that a HI
child should be brought up as a non hearing person. In fact, at schools that
teach this philosophy, such as the one in Framingham, hearing aids are not
allowed in the classroom.

Cued Speech is an adjunct of ASL which uses visual cues to describe phonemes,
the basis of speech. Since there are about 70 or so phonemes that make up speech
sounds, it is easier to learn.

The Oral method uses residual hearing and speech therapy to help the person
function in the hearing world. In schools that teach this philosophy, such as
Clarke School for the Deaf in Northampton, sign language is not allowed in the
classroom. Sometimes exceptions are made in the preschool if the child is
fluent with sign, but the goal is not to allow it. Much like your foreign 
language teacher in school would let you speak English to ask a question.

Total Communication is based on the philosophy that the child should have a
minimum of barriers when learning to communicate. Sign, speech, cueing, visual
gesturing are all allowed and encouraged. This is the basis for the Early
Intervention program Patrick is in today. They tend to teach sign as the basis
for communication development first and tackle the speech as the child 
progresses.

My philosophy today leans towards Total Communication. Patrick will need sign to
function in the deaf world, and all of us in the family have made the
commitment to learn ASL so that he is encouraged to use it. Denying him sign
would be a big mistake in the long run as it would shut him out from many of his
peers who do not speak.

In the same way, I feel we should make every effort to give Patrick the
opportunity to speak. While he does not need speech to function in the hearing
world, it will certainly make his life a lot easier once he masters it, IF he
masters it. How well he does is up to the instructors, his parents, but mostly
HIM. If he doesn't want to learn it then we can't berate him for it.

The big battle will come in the next two years when we have to work with the 
state on his education plan. With 766 funding being earmarked as a budget 
buster it will take a lot of work to ensure Patrick gets the best education
he deserves. But that's a ways down the road.

Thanks for your insight,

Chris

re: .33

thanks for a very interesting note.

Clay

    This is a very interesting topic, but I have a question from our
    situation.  (By the way he was 5 last week)
    
    AJ had his tubes removed from his ears a few weeks ago (Dec 12) after
    they had been in over 2 years.  The specialist did this because he was
    concerned that after that length of time there would be scaring of the
    eustatian(sp?) tubes, and a fluid buildup behind the tubes, that as of
    then were not fully functional, partially clogged.  The specialist said
    he was very surprised during the surgery at the large amount of fluid
    that was behind the tubes. I was as well, they drained for several days
    after.
    
    As of earlier this week a hearing test was performed, the computer
    tracing shows he has minimal hearing in both ears.  It should trace to
    look like the peak of a mountain, his was completely flat.  The tone
    test was poor as well.  They did test for nerve deafness, and
    thankfully there is none (as of right now at least).  I and his
    teachers have noticed his lack of response to verbal commands over the
    last week or two, these tests confirmed our suspicions.  It was
    described to me that he is hearing as if he were under water in a pool,
    and someone was shouting from above the water, virtually nothing.
    
    In two weeks we will revisit the specialist, retest the hearing, and
    decide if the tubes should be put in again.  Meantime I am putting ear
    drops in his ears several times a day, and last night decided to ask
    the pedi for a prescription for an antibiotic.  I felt he was getting
    worse as far as cold, asthma and ear symptoms.  The pedi at that point
    was the only person I would have been able to reach after hours.
    
    Now I am having real fears that if I don't insist the tubes be put back
    in, virtually right now, he may have some permanent hearing loss and
    possible speech imparement.
    
    Any comments from anyone who's experienced this?  Do I have valid fears
    of a permanent loss from the fluid?  It just doesn't seem to be getting
    better fast enough for me.
    
    Lyn

    Lyn,

    We went through this with our daughter, Amber.  Amber has a history
    of ear infections (from 2 mos to present, 6.6 yrs).  She had tubes
    put in at ten months and for almost two years was infection-free.

    Last Easter morning she complained of fluid running out of her ears,
    she also complained of pain. I ran her over to the walk-in clinic 
    and they told me her eardrum had just perforated. She was put on
    anti-biotics and a local painkiller and sent home. Each time we 
    went to the pedi for a ten day check, he said she still had a fluid
    build up but really no infection.  Then one day I noticed that she
    couldn't hear me (I thought she was just ignoring me at first). 
    We went in for a hearing test and she showed profound hearing loss
    in one ear and medium in the other.  After a couple more weeks on
    anti-biotics, all of her hearing returned.

    I am certain that fluid in the ear, coupled with infections, for
    a long period of time, could result in permanent hearing loss.
    Keep up the anti-biotics, antihistamines or whatever else the
    pedi recommends and keep the child out of situations that stress
    the ears, like flying, swimming, blowing noses too hard, etc.

    Good luck,
    Jodi-

    Lyn, 
    	This coming week we are having Shayne's second set of tubes put in 
    his ears.  We have had him on anitbiotics for 6 months now (his last
    tubes fell out about 6 1/2 months ago).  
    	The ENT is very concerned about the wax/fluid buildup hindering 
    Shayne's hearing, with Shayne having Down syndrome the last thing he 
    wants to see is any hearing problems as that will affect his speech.
    	We see the ENT every 3 months at least and have frequent hearing 
    tests to just keep on top of things. 
    	We also decided to go with the tubes again because the constant
    infections are playing havoc with trying to stabilize Shayne's 
    blood sugars and keeping his diabetes intact. 

I asked the ENT's and audiologists that question when we were diagnosing Patrick,
and yes, permanent hearing loss can accompany frequent middle ear infections. It
is a different type of loss than Patricks. Keep on top of it.

Chris

    Even a single severe infection can cause residual hearing loss. 
    That's why it's so important to have ear infections taken care of
    promptly.
    
    I have a tiny (almost unmeasurable) loss in the middle range as a
    result of a very severe infection I had in college and didn't get
    taken care of until it was entrenched and took about six weeks of
    antibiotics to get rid of.  The funny thing is, this tiny loss is
    enough to cause me considerable inconvenience, because it happens
    to fall right about at the level of the average male voice, and if
    there's a lot of high-pitched background noise, such as in a
    restaurant, I can have a lot of trouble making out what someone
    else is saying to me.  It's a lot worse when my allergies are
    acting up.
    
    I've noticed that most people resent being asked to repeat things
    because I can't hear them.  They get annoyed, and often say rude
    things about not paying attention.  And they don't seem to believe
    that a person can have a loss in only part of their hearing range. 
    Even when they do claim to accept the explanation, they're back to
    the "oh, never mind" two repeats later. 
    
    It's given me a lot of sympathy for people with *real* hearing
    handicaps.  
    
    --bonnie

     <<< Note 457.39 by TLE::RANDALL "liberal feminist redneck pacifist" >>>
					      ^^^^^^^^

>    The funny thing is, this tiny loss is
>    enough to cause me considerable inconvenience, because it happens
>    to fall right about at the level of the average male voice

Gee Bonnie, I can think of many feminists who would regard that as an 
_advantage_, not a "considerable inconvenience."

:^)

Clay

    re .39
    
    I have a similar small hearing loss, with the result that I have
    trouble picking out voices against a noisy background.  I get the
    same irritated response when I ask for a repetition, and if I ask
    for the speaker to talk a little louder, I often get angry yelling:
    
    A:	-mumble-
    Me:	excuse me?
    A:	-mumble-
    Me: Can you speak a little louder, please.
    A:	WHY CAN'T YOU JUST PAY ATTENTION!!
    
    My solution, as those who know me complain, is for me to do all
    of the talking...
    			-John Bishop

Dirk had recurrent middle ear infections from birth to about 4 years old.  The
peditrician always treated them very promptly and with antibiotics.  Finally,
at age four when they became so frequent as to cause fluid buildup he sent me
to an Ear-Nose-Throat doctor who recommended taking out his adenoids which we
had done.  Then we had only a few infections, at most one a year after that.

The problem as the ENT explained it to me is that the fluid which is naturally
in the ears and increases during an infection is very liquid.  This makes it
easy for the body to absorb it.  During recurrent ear infections this liquid
becomes sluggish and even solid if left to itself, causing permanent hearing
loss.  Dirk had some hearing loss the last year before the operation but 
fortunately we were in time and his hearing came back to normal after we got
the infections under control.

With Mark, he also had a lot of infections but fortunately not as many as
Dirk since he did not respond to most antibiotic treatment.

Cheryl

    
    It's been almost two months since I wrote about Patrick, and he has
    made some significant progress in his communication skills, both manual
    (physical movement) and oral.
    
    On the physical front, he waves 'hi' and 'bye-bye' when people enter
    and leave his domain, wherever that may be. He shakes his head up and
    down for 'yes' and side to side for 'no' in response to stimulus. This
    may not seem to be a big deal to most parents but we have to consider
    that even though he is a year old, his communication skills are
    delayed. He is catching up fast, though, much faster than any of the
    professionals he sees had expected. He has started to sign (ASL) 'no'
    in response to something he doesn't want (oh, joy 8^). 
    
    Orally, his babbling is starting to become more structured. As soon as
    we put his hearing aids on, he starts voicing. He will try to mimic
    the sound you are making with your voice, even when he cannot see your
    face. This is the beginning of speech, the imitation of the sounds
    presented to him. He still voices when he feels like it, not in a
    consistent fashion. We found a great toy in Toys-R-Us called 'Little
    Boppers'. It's a Mickey Mouse that will dance in response to sound.
    When he voices, Mickey dances, and he notices it. What we are working
    on now, is to establish the cause and effect, that his voicing is what
    causes Mickey to dance. He already knows that if he yells, we pay
    attention to him, so this is the next logical extension. 
    
    My wife and I have been taking ASL classes for a month, and we're
    making progress. It's going to take years to be fluent in sign but we
    can communicate on a basic level right now. We try and use sign at all
    times when we're around Patrick. One thing we were doing wrong, was, we
    would sign to Patrick but not to each other. We need to sign together
    as a family.
    
    Patrick will be fitted with his own hearing aids next week. They are a
    new model which is state of the art, and only half the size of his
    loaner aids he has been wearing. This should help out with the feedback
    problems we have been having on occasion.
    
    If anyone is in Worcester for the Saint Patrick's Day parade, watch for
    the CMPA float (Central Mass Parents Association for the deaf and
    hearing impaired). We will be signing to a song. My wife and I will
    both be on the float with about 20 others. She is the pretty lady
    standing next to the guy screwing up all the signs 8^)
    
    Take care
    
    Chris

    Chris,
    
    Thanks for the update.  I am happy to hear Patrick's progress.
    Please always keep us informed.
    
    Wendy

    re:43
    
    How wonderful for Patrick, you, the family and all those who will come
    into his life!  

    I've been meaning to respond to this note for some time.
    
    As I've mentioned in here before, our daughter Caileigh has a moderate
    to severe loss in both ears and wears two behind-the-ear aids.  Her
    (sensorineural) loss is often compounded by fluid problems, which we 
    have to watch for all the time.
    
    Caileigh, who is now five, received her own aids just before she turned 
    three.  Before that, she also had loaners from Hahnemann in Worcester.  She
    also used to go there for individual and group aural therapy when she
    was 2 to 3 1/2.  Only Hahnemann's agreement with the State was
    signed about a month before she turned three (when the town picks up
    the cost), so back then we had to pay for that therapy ourselves.  She
    still goes periodically for evaluation.  Now she's in a language-based
    classroom and talks like a child who is not hearing impaired.  Of
    course, her loss is not as severe as Patrick's or some of other children
    discussed here.  She does so well that it's still a shock to realize
    how much she _doesn't_ hear during her periodic hearing tests.  She's
    and adept speech reader, which becomes obvious when she talks on the
    phone (very difficult for her even with the T-switch).
    
    We were also very happy with the people at Hahnemann.  
    
    Keep us updated on Patrick.  Also...is the basenote (Devon's dad) still
    out there?  How is he doing?
    
    -Tracy
    
    

    Also, there is a notes file on hearing loss (WILLEE::HEARING_LOSS). 
    Not to active, but pretty interesting.
    
    -Tracy
    

    
    WILLEE has been unreachable for over a month.
    
    Quick update, Patrick got his own HA's Tuesday, they are behind the
    ear, and about half the size of the loaner aids. To put it in
    perspective, they are about the size of your thumb from the last
    knuckle to the tip. These are the state of the art in BTE aids today,
    and have about 70dB of gain (!!!). He responded at a threshold of 35dB,
    which is a whisper. Technology won't solve his hearing problems but it
    sure can help them. His chances for speech increased by an order of
    magnitude.
    
    Besides the improvement with his aids, he is testing much better, too. 
    They flash a light when he responds to the sounds, and whenever they
    flashed the light he signed 'light'. 
    
    He has also started to relate sounds that he hears, to their meaning.
    I can say 'bye-bye' and he'll wave bye-bye. We made up a sign for the
    microwave and he signs that when he hears the microwave fan turn on.
    
    These past few weeks have been real exciting.
    
    Re: Tracy
    
    Are you aware of CMPA (Central Mass Parents Association for the deaf
    and hearing impaired) ?
    
    Chris

    
    Anyone going to the Saint Patrick's Day parade in Worcester, this
    Sunday, keep an eye out for the CMPA float. We are towards the end of 
    the parade, #27 in the second group. We will be signing to the song 
    Everything I Do (I Do It For You) by Bryan Adams. My wife and I will be
    wearing pictures of Patrick since he cannot be at the parade.
    
    See you there
    
    Chris
    

    Chris, do have fun on Sunday!
    
    Do you want to post details of the parade, like time and route?
    
    Oh and don't forget the ol'woolies!  I understand the weekend forcast
    is a real chiller!!
    
    Lyn

    
    I'm sorry, I forgot!
    
    The parade starts at 12:30 pm in Webster Square, and goes down Park Ave
    to Highland Street. If you plan on driving there, plan early because
    Park Ave is shut down at 11:30 am.
    
    The forecast is sunny and 38 degrees (if you believe the
    weatherguessers). Time to break out the Damart longjohns.
    
    We build the float on a flatbed trailer tomorrow, in a marathon
    session. The Norton Corporation opens up their shop to us and we have
    full use of all tools and materials. In turn we put Norton signs on the
    float.
    
    Thanks,
    
    Chris
    

    
    The parade went well although we froze our buns off. It was tough to
    sign in that cold wind. I saw a few people from DEC, which was nice.
    Quite a few HI/deaf people saw us and signed back. Of course, some
    numbskulls threw stuff at us and mimicked us with obscene gestures, but
    that's to be expected. All in all a great, but cold, day. We have been
    invited to the Founder's Day parade in Oxford as well as the Lions Club
    parade in Millbury, so maybe we'll be doing this again this year.
    
    Patrick had his first arena today. Children in early intervention
    programs in MA have an arena evaluation at least every year. There is a
    speech pathologist, physical therapist, occupational therapist,
    language devbelopmentalist, and a social worker present. They observed
    Patrick as he played and made notes about where he is in these areas.
    It's all good news, his only delay is in speech, as expected, but what
    was really great was his language and communication skills are at least
    as good as a normal hearing 13 month old if not a bit better.
    
    Onward and forward,
    
    Chris

    Chris, I want to tell you the float was outstanding.  We tried to wave,
    and AJ learned on Sesamie street how to sign I Love You, but it's hard
    to show that to people when you're wearing mittens!  
    
    I told him in his simple terms that your hands were saying the words to
    the song.  I think he understood.  We were near the beginning of the
    parade, and it seemed you were having some "technical audio problems".
    
    I will be looking forward to seeing you at the Founder's day parade. 
    You will be on the float, I'll be at the town ambulance command station
    next to the Fleet bank (working of course).
    
    (do say hello to one of AJ's former daycare providers, and her lovely
    daughters from Sutton AV)
    
    Lyn
    (from Oxford)