Conference moira::parenting_v3

    I have been a diabetic for 24 years (since age 9).  Thing have really
    advanced since then.  Couple of quick suggestions since a lot
    must be going through their minds.
    
    	o Locate a doctor, diabetes specialist, that you can feel
          comfortable about.  Fortunately in MA, the list is long.
          Don't assume Joslin Clinic is the only answer.  It may
          be a pain to get in an out of Boston.  U Mass med center
          is terrific.  Dr Rossini, chief of the dept. is world
          respected.
    
        o Have the parents join American Diabetes Association and
          Joslin Diabetes foundation.  JDF is focused at kids, however
          they are more of a research funding group.  ADA is a great
          educational association.  They have a kids section in their
          monthly magazine.
    
    	o Teach the child to take care of himself.  Don't overreact to
          insulin reactions and other life small problems.  Adjust
          food schedules to a norm, don't make the kid feel guilty that
          you are eating on time for him.
    
     	o Make sure the child can monitor his own blood.  Again don't
          get upset if his sugar is to high.  Let him think why it could
          be high, diet, exercise, sickness. 
    
        o Keep the child active.  Sports is VERY important for longterm
          health.  Encourage aerobic sports.
    
    steve 

    My cousin Jen is almost 15 and was diagnosed when she was 8.  She has 
    received all of her treatment at U-Mass in Worcester.  They've all been 
    very happy with that setup.  I don't know her doctor's name, but I'll 
    find out and let you know.
    
    I agree with the previous notes advice to teach the child to take care
    of him/herself.  Just don't expect it all to happen at once.  There's a
    lot to learn -- for everyone.  Jen did really well at understanding the
    types of things she could and couldn't eat, how important it was to eat
    at the right times, how to test her blood, etc.  Giving herself a shot
    was a different story.  She wouldn't even talk about it for several
    years.  She did finally learn when she went to diabetic camp when she
    was 11 or 12.  (The camp is called Clara Barton Camp and is in Oxford. 
    I'd definitely recommend it.  Jen's been going for several years now
    and she loves it.  It gives her a chance to meet other kids with
    diabetes, and her parents don't have to worry about her being
    completely on her own.)
    
    All-in-all Jen has done really well.  It was scary when it all first
    happened, and she still has pretty severe reactions once in a while
    (always at night), but other than that she leads a normal, busy teenage 
    life complete with playing sports, going to sleepovers, babysitting. 
    So far she hasn't shown signs of any other complications that sometimes
    come along with the disease.
    
    There are a couple of notes on diabetes in the MEDICAL conference (on
    node HYDRA) but I didn't find it too helpful.  It might be a good place
    to try if you have questions.  Good luck to all of you.
    
                                                Tracy
      
    

    Thanks .1 and .2 for your insight.  My nephew is at Joslin - that's
    where his pedi sent him.  My sister and her husband are still in shock. 
    It's going to take some time for Ryan to get adjusted to this - he
    thinks that this means he can't have waffles tomorrow for breakfast.
    
    I didn't know until last evening that diabetes runs in my
    brother-in-law's family.  His brother is a diabetic.  Fortunately for
    Ryan when he began displaying symptoms - excessive thirst and started
    wetting the bed, his Dad immediately suspected diabetes.  Although Ryan
    was only tired, he had a blood sugar of 717 (I hear normal is about
    100). 
    
    Thanks again,
    Jeanne 
          

    I'm glad that your nephew is being well taken care of.  Yes, it will
    take him a while to adjust, but kid's are *so* much more flexible than
    we are.  As far as the waffles go, chances are he can have them as long
    as he has dietetic syrup!
    
    Since your brother-in-law's brother is diabetic, Ryan's parents at
    least have personal experience with it and know that it is a condition
    that can be lived with.  Once they get over the initial shock and fear
    I'm sure they'll be okay about it.
    
    It's definitely something that has to be thought about constantly --
    knowing where you'll be at mealtimes and what will be available to eat,
    remembering to bring blood testing equipment, insulin, syringes, always
    checking to make sure you do get *diet* coke at McDonalds and that the
    server hasn't messed up, making sure your friends know what to do if you 
    have a reaction, etc -- but eventually you get used to it and it becomes 
    second nature.
    
    These first few days can be really difficult.  Seeing a child in the
    hospital is never easy and it can take a while to get the blood sugar
    stabilized at first, so that means lots of blood tests.  It took
    several days to get Jen stabalized so instead of having to insert a
    needle each time, they put one in with a cork at the end and only had
    to uncork it to take more blood!
    
    Hopefully Ryan will be home soon and the whole family can start getting
    back to normal.  Just remember that easier times are ahead.  Good luck.
    
                                                   Tracy

    It's interesting, I made a strong comment in note 282 (Bedwetting)
    to make sure it isn't diabetes.  No one, made comment, everyone
    stated its some other type of problem.
    
    IF YOUR CHILD HAS THIRST AND IS WETTING THE BED, CHECK WITH YOUR
    DOCTOR!
    
    steve

    Could you post a complete set of symptoms for JD?
    
    Sue

    I don't know what other symptom's might be, but in Jennifer's case she
    was drinking a lot more and going to the bathroom a lot more.  My aunt
    and uncle had no idea what was wrong but they took her to the hospital
    and her blood sugar was over 800.  She didn't show any other signs.
    
                                                     Tracy

    Symtons:
    
    o Quick loss of weight
    o Thirst
    o Frequent urination
    o "Funny" taste in mouth
    o Dizziness/Blurred vision
    
    Diabetes usually comes on very abrubtly in children.  In my case in
    two weeks I became very ill, probably would have had serious problems
    if my father hadn't acted quickly.  If you suspect, you doctor will
    probably advise seeing your son/daughter the same day.  Usually
    requires some hospitalization to stabalize and get the poisons out
    of the system.  
    
    steve
    

    I finally got to visit with Ryan last night in Boston.  He's doing
    pretty good.  The hospital let his Mom take him out for pizza for
    supper - what a spirit lifter!  First, to get out of the hospital for a
    little while and second, to eat like everybody else.  He's a real
    trooper and seems to be taking it all pretty well (right now anyway). 
    My sister Carol is still on an emotional roller coaster.  One
    minute counting her blessings that it's not any other disease and the
    next minute contemplating the changes in the future for the entire
    family.  
    
    She's beginning to get it all into perspective, although 
    she's scared to pieces of the day they take Ryan home and they're 
    on their own.  
    
    I'd be real interested to know how your siblings handled your disease. 
    My sister is real concerned about her daughter and how this is going to
    affect their relationship now that Ryan is going to require so much 
    attention.   
    
    Regards,
    Jeanne  

    Why are you assuming there will be so much extra attention needed? 
    Perhaps for a few weeks or months, but beyond that its a family
    understanding that good food will be eaten, on time; few extra
    minutes in the morning and evening for shots; few extra minutes testing
    blood sugar.  My relationship with my siblings only changed a bit
    that my older brother became more protective of me.  
    
    Life in the family must go on with as little disruption as possible.
    If everyone is always worrying about Ryan, the poor kid will be
    feeling guilty for ruining everyone elses lifestyle.
    
    BTW, I got out of the hospital on Halloween morning.  That night I went
    Trick or Treating with my UNISEF box.
    
    steve

    re .10
    
    They have a lot of fears, unfounded maybe, but fears nonetheless. 
    Until they have a chance to experience change - and perhaps see 
    how little change there may actually be, they will be concerned.
    
    Every time I speak with Carol she sounds much better.  The initial
    shock is wearing off and she's beginning to understand all the
    information that's been given to her over the last three days.
    
    J.

    I agree that the extra attention is not necessary for too long.  Yes,
    there are always things to think about, but it does become routine and
    fairly non-intrusive on the family.
    
    Jen has one sister, Jaime, who is 12.  She was only 5 when Jen was
    diagnosed.  I don't think it has affected her much at all.  I think
    she's grateful that *she's* not the one getting the shots and missing
    out on the candy, but that's about it.  She's never seemed to have any
    resentment towards either the attention Jen gets or because the
    family's life is a little more structured than it might otherwise be. 
    
    My aunt and uncle decided that it was Jen who was going to have to live
    in a world full of sweets that she couldn't have, and difficult as it
    was for her, it might as well start at home.  It's not as if they are
    all constantly eating candy and cookies, but those things are around
    sometimes.  Whenever possible, they also have the dietetic version for Jen.
    
    As far as Halloween goes, I like the idea of trick-or-treating for
    Unicef, but here's another idea.  Jen would always go out
    trick-or-treating with her friends as usual but when she got home she
    would choose one piece of candy for a treat, and then her candy-loving
    grandpa would buy the rest from her.  (I think he was a Jen-loving
    grandpa more than a candy-loving grandpa, but he was a good actor!). 
    She didn't miss out on the fun of Halloween and also got the extra fun
    of bargaining with Grandpa over the price of the candy.
    
                                            Tracy
    

    	Shayne was diagnosed with diabetes when he was 5 months old, he is 
    now 2 weeks shy of 1 year.  
    	The fear and anxiety of first finding out about diabetes can be 
    overwhelming, but with time the family will learn that THEY control 
    the diabetes and not the other way around. 
    	There are so many support groups that the family can contact.  The 
    folks in those groups went through the same scenario and can not only 
    offer comfort, but can give wonderful suggestions on how to handle any
    situation. 
    	I put a note in the Medical notesfile regarding diet, and received 
    some terrific advise.  Although Shayne is not yet aware of Halloween, 
    one suggestion was to let him go trick or treating and then at the end 
    of the night, buy the candy from him and then let him get himself a 
    treat of some sort, (book, toy, etc.) I can't wait for that.  
    	The biggest help we have received is from the Barbara Davis Center 
    for Childhood Diabetes at University Hospital in Denver.  The staff has 
    been a God send.  They are available to us 24 hours a day, we were
    given a list of all the doctor's, nurses, nutritionists and social
    workers office numbers along with their home phone numbers and an 
    emergency number to call.  There has never been a question or situation 
    that has been too small for them to take time for, and I have even
    received apologies for taking as long as 15 minutes to return my call, 
    that was the longest I had to wait.
    	We live 60 miles from the center, so in dealing with Shayne's
    diabetes we have found that we now teach the local doctor's how to 
    treat him.  At first I never believed them when they told us we would
    know more than anyone about Shayne and diabetes. 
    	There are numerous articles lately, about finding a cure for
    diabetes, and I truly believe that in Shayne's life time there will be
    a cure.  
    	I look back now and think of how scared I was and how I _just_ knew
    this would be the end of life, but as with everything in life, it's the 
    fear of the unknown that is the worst, once the family learns what they 
    are dealing with, they will make a few changes and then LIFE GOES ON.
    	Sorry to be so long winded, but I HAD to add my .02.
    FWIW
    Malinda 

    Have your sister check with her local hospital for a support group
    of parents of children with juvenile diabetes.  I know there's one
    in Nashua and I think there may be one in Hudson NH as well, so I
    assume that most larger towns have one or will know where a nearby
    group is located.
    
    --bonnie

    There's also a Juvenile Diabetes Association out of Boston which is
    very informative. 
    
    Rgds,

    A brief update... Ryan came home from Joslin on Saturday.  My sister
    and her husband are calm and feel confident that they can handle this.  
    Ryan's sugar is not yet back within range, but they're working on it.
    
    On Tuesday, Ryan, Dick and Carol met with the school principal, nurse
    and his teacher.  They have been VERY supportive and this has helped
    alot.   They basically told Carol - you take care of him when he's home
    and we'll take care of him when he's at school.
    
    Thanks for all your notes.  There is a support group at the local
    hospital in Attleboro and I'm sure they'll contact them soon.
                                                   

    	Glad to hear things are working out!!!  As far as getting the blood
    sugar into the proper range, it takes a while to find the "right"
    dosage of insulin, which for us changes with the wind.  But I'm sure 
    your sister will find that out. 
    	What has amazed me so, since Shayne was diagnosed, was how your
    mood, or the day's activities can affect his blood sugar. 
    
    Good luck to you and your sister's family, 
    Malinda 

    Just out of interest, there was an item on TV and an article in the
    paper celebrating, I believe it was the 74th birthday of one of the
    first children that Banting and Best tested insulin on.  This is the
    longest surviving person with insulin treated diabetes  (not the
    oldest ... just the longest user).  I dunno if this made U.S. news,
    but it certainly made Canadian news, since Banting and Best who
    discovered Insulin were Canadians.
    
    Apparently this man had developed diabetes around age 7 and by the time
    he went to Banting and Best, his weight had dropped to 22 lbs (10 kg).
    
    So, to those who are worried about juvenile onset diabetes, here is a
    good example that children, with care, can survive a very long time
    with insulin injections.
    
    Stuart

    A friend just had his 14 year old daughter diagnosed with diabetes. Can
    someone provide a pointer to information about this?  I looked to see
    if there were another conference on diabetes, but if so, it's
    restricted.  Help appreciated.  They're just beginning to come to grips
    with this disease, starting their reading, etc.  

    you could try looking in VMSZOO::MEDICAL, but probably the best place
    is from the Juvenile Diabetes Association
    

    Not sure where your friend is located, but Children's Hosp.
    in Boston has a lot of support groups, education programs,
    etc. My sitter's daughter was diagnosed two years ago (she
    was 14 at the time, also) and they have found Children's to
    be very helpful. 
    
    They found out about a summer camp for kids with j.d. where the 
    kids could work on their eating habits while still having a
    great time in an environment where they didn't feel like oddballs.
    My sitter's daughter was able to reduce her insulin need as a 
    result of improvements she made at camp. Let me know if you want
    more info on this.
    
    Lucy

    See .2 for comments on the summer camp for kids with diabetes.