Conference moira::parenting_v3

    
    hi Trish...
    
    PARENTING isn't one of the notes files that i generally follow but a
    friend pointed me to your note...
    
    i have a 10 year old daughter who was diagnosed as being cerebral
    palsied shortly after birth (she was almost 3 months premature)...
    more specifically, Diana has spastic quadroplegic cerebral palsied
    and is globally delayed as far as any developmental issues are
    involved...  
    
    i know how frustrating it is trying to get information out of the Dr's
    at this point and it feels like they aren't telling you anything...
    the problem is, they may well be telling you all they know...
    
    CP is kind of a strange condition...  it can manifest itself in a lot
    of different ways...  in mild cases, a person with CP may go through
    life with an undiagnosed condition...  in severe cases like my
    daughters, one may go through life non-ambulatory, non-verbal, and
    totally dependant on others for everything...  i don't want to be
    scaring you, but that's just the way of it...  
    
    CP is NOT a disease...  it is a condition...  essentially what that
    means is, if a person has it, what you see is sort of what you get...
    it will not get better, it will not get worse...  the person has to
    learn to live and deal with it as a part of thier life...  therapy and 
    rehab can, and does, make folks with CP very active and productive...
    in fact, i'll go out on a limb and say most folks with CP lead full and
    productive lives...  the gating factor is the extent to which they are 
    affected...
    
    Cerebral Palsy (i am not a doctor, nor do i play one on tv, but i
    believe this description will be pretty accurate) basically involves
    brain damage...  a part of the cerebral cortex has been somehow
    affected (palsied/paralized) and does not function normally...  since
    brain tissue does not regenerate, the palsied person must learn to
    utilize other sections of thier brains to take up for that part which
    cannot function as it might otherwise...  Doctors tend not to want to
    talk to you about what the effect is going to be on your child when
    they suspect CP because it is impossible to know, until the child
    starts to develop, the extent of the condition...  
    
    CP is NOT the same as mental retardation, although some folks with CP
    are retarded and some retarded people also have CP...  the two do not
    have to go hand in hand...  it can debilitate mentally and/or
    physically and the only way to know what each case is is to watch and
    wait...
    
    sounds like you're having some exciting stuff happening with with your
    son...  my daughter was not one to find an easy way into this world
    either! :^)   she had LOTS of problems that contributed to her present
    situation (she is non-verbal, non-ambulatory, posesses no self-help
    skills) so please don't look at her and believe that your son's
    story will be the same...  she has been pretty drastically impacted
    with her condition...
    
    i guess the moral of this whole story is don't panic!  :^)  it's only
    by waiting that we'll find out what the full story is...  don't be
    afraid to press the doctors for all the info you can get...  they 
    tend to hesitate to say anything when they aren't sure but you should
    always press for as much as you can learn...  you'll all benefit by
    it...
    
    please feel free to contact me offline if you like...  questions and
    stuff that you pose here may not get answered for some time, so, fell
    free to ask here but be prepared to wait patiently for a response! :^)
    
    hope this stuff helps somewhat...
    
    					da ve  
    

    I don't know that this will help much, but I went to school with a
    young woman who had cerebal palsy.  She was studying to be a
    nurse, and was considered one of the most promising future nurses
    in the class.  Her patients loved her.  CP affected her primarily
    physically; she couldn't walk more than a couple of feet and got
    to her classes in an electric golf cart.  It was fun to watch her
    making a bed from a wheelchair -- going  zip-zip-zip around the
    bed.  She also had a very slight bit of interference in her
    speech.  
    
    --bonnie

    My cousin, age 50, was born with cerebral palsey.  Despite her
    handicaps (difficulty walking, speech and hearing problems, periodic
    disability) she obtained an MA in Spanish and is still gainfully
    employed as a children's librarian.  
    
    Laura

    
    My brother, who is now 18, was born with CP.  From what I know, CP is
    caused from the brain being deprived of oxygen, for any reason.  My
    mother had problems in delivery, her uterus burst.  Kenny was actually
    stuck inside until the DRs could get him.  During that time he was not
    getting any oxygen.  The Drs at knew he had some damage but couldn't
    diagnose until he was about 6 months if I remember right.
    
    I know there are alot of different degrees of CP.  There is also 2
    types (maybe Dave can help me here)  One is where the muscles are
    really tight, and the other is where the muscels are very loose.  Kenny
    has very loose muscles.  He is in a wheelchair and has difficulty
    speaking.  
    
    I wish you the best of luck.  You can contact me offline also, if you
    would like to talk, or need more information.
    
    elizabeth
    

    
    	looks like there's a few folks with experience with CP!   :^)
    
    	i guess it's one of those things that you don't really think about
    much until you're faced with it and then all of a sudden you find
    out just how much there is around you...
    
    	as for the two types mentioned before...  when the muscles are
    always tight and tense ("increased tone" is what you hear a lot) then
    you are talking about "spastic cerebral palsy"...  when the muscles are
    all loose and relaxed and there is almost no "tone" at all, you have
    "athetoid cerebral palsy"....  spelling may not be quite right but the
    terms are correct...
    
    					da ve

    Thank you all for your responses!  I went to the library at lunch and
    got a lot of good info.
    
    To give you a little background...We were sent to the Ortho Dr because of
    Jacob's hip problem.  The ortho suspected a neurological problem at 2
    months but didn't tell us.  Instead he sent a letter to the Pedi Dr
    telling *him* to discuss this fully with us.  He NEVER did that!!!
    I just found out about the letter last night from the Ortho.
    Two weeks ago we switched
    Pedi's because when I would tell him about Jacob's lack of development
    he would blow me off and say that I was a worrier.  Im glad I listened
    to my instincts.
    
    The old Pedi gave Jacob a DPT shot at 3 weeks, 2 months and 3 months.
    (Normally it's 2, 4, 6 months)  I questioned him and of course I
    "shouldn't worry".  Well I did some reading today about DPTs.  The book
    says that a DPT should not be given if a neurological condition exisits
    or is suspected!!!!  Of course at 3 weeks we didn't know anything, but
    if he would have waited like he was supposed to.....
    I called the ASK-A-NURSE hotline and asked her if the DPT shot could
    *cause* a neurological disorder and she said yes.
    
    Any advise on how to handle this?  I want to strangle the old Pedi for
    not telling us about the letter!!!

    My friends daughter had her DPT shot before she was a month old and had
    a terrible reaction (convulsions).  She was on medication for her first
    two years.  She seemed fine (except her left hand seemed a little
    "lazy") They told Jan (her mom) that this was because of the I.V.. 
    Anyway, she started having behavior problems when she enter
    kindergarten.  Last year they discovered she had a learning disability. 
    The school psychologist said it was because of Jan getting divorced,
    etc...  Jan brought her to a  neurologist and they did all sorts of
    tests.  They found scarring (scar tissue??) on her brain.  They
    concluded that she has a very mild case of CP.  That is also why her
    left side (not just hand) is "lazy".  Of course none of the doctors
    would tell her that it was from the DPT shot.
    
    Anyway, she's 9 years old and has a tough time in school.  But she is a
    very active, "normal" little girl.
    
    Good luck to you all.
    
    Joyce
    

    Did the neurologist think it was caused by the DPT shot?  Doctors
    sometime stick together...noone will be part of a malpractice case. 
    I'm afraid of mentioning it to the neurologist because he may think I'm
    going to sue and may not tell me the truth.  Maybe I'm going off the
    deep end here.....
    
    We go to the neurologist tomorrow.  Any advise out there would be
    appreciated.
    
    Trish

    Keep detailed records of your own.
    
    Obtain the advice of a competent lawyer.  Sounds like a shoo-in.
    
    Laura

    re. .9
    
    Let me check with her and find out what was said by the neurologist. 
    I'll try to get back to you by tomorrow at the latest.
    
    Joyce
    

    Not to start a hornet's nest here but.... you as a parent (legal
    guardian,if that's the case) have every legal right to read and obtain
    copies of any/all medical records, which include doctors' and nurse's
    progress notes.  If it were me, and I have done this myself, obtain
    copies of all medical records from your former and present pedi, the
    ortho doctor, and any hospital records, including outpatient, emergency
    room, or clinic visits.  Then after reading them at your leisure,
    decide if you need the assistance of a legal person.  Just note, some
    hospitals will attempt to discourage you by charging a "copying fee" of
    a few cents per page, if it's for your personal use. No charge,
    generally if it's for referral to another doctor.  I usually say I am
    seeking a second opinion, and they don't charge me.  
    
    Remember, you are your child's advocate, make sure that whatever is
    done to your child, is something you would allow to be performed on
    you!  As another thought, I would just as personal opinion, steer clear
    away from the "ambulance chaser" type lawyers who advertise on TV.
    
    As an encouraging note, some of us around the MRO and NRO facilities
    are aware of the custodial person who works there. Although he has CP,
    he is extrememly intelligent, an extremely dependable worker, and I
    know he in fact lives alone, and owns the multifamily home he lives in.
    In my opinion a true CP sucess story!
    
    Please don't be discouraged!
    Lyn

    I know this string is quite old (I'm thousands of notes behind) but I
    just wanted to add another happy story.
    
    My cousin, now 25, was born with CP.  He had a lot of difficulty with
    his legs and his gait, his eyes and his speech.  However, he had lots
    of therapy for these things (I remember him wearing glasses before he
    was a year old and leg braces) and as he got older, they got much
    better.  He was always interested in playing sports, particularly
    football, and his parents let him play in the little league football.
    They always told him that he might not be able to play when he got
    older because his legs weren't strong enough.  Intellectually there was
    not a thing wrong with him and he was an above average student. He
    finished High School (was a student trainer for the football team) went
    to University majoring in sports therapy and is now a trainer at a High
    School. It has been years (10 or more) since I noticed anything unusual
    about his walking.  He has always been one of my favourite cousins and
    is one of the nicest people I know.  My son took to him immediately
    when they met for the first time at Christmas. My son was 4.5 months
    old at the time and not particularly keen on meeting strangers. (I'm
    convinced that babies can see people's auras ;-))
    
    This long winded reply is just to encourage you that having CP is not
    necessarily the devastating disability (am I allowed to use that word?)
    that many people associate with the condition.  When I was a student
    nurse we spent a couple of months at a special school for severely
    effected children with CP.  It is my observation that very seldom is
    this condition associated with mental retardation. It is just that they
    have such poor motor and speech skills that people think they are. 
    When given a way to communicate (and sometimes you have to get very 
    creative) they are usually of above average intelligence.  They are
    just trapped in a body that refuses to cooperate! I still remember my
    time at this school with much fondness. Those were the most loving,
    giving children I have ever been with and I do miss them. Most of them
    also had a wicked sense of humor!
    
    How have things been going for you?
    
    LaDonna