thepsyko

On 15 Aug 2003 in alt.support.diabetes.kids, "Helen"
<hellz@nospam.optusnet.com.au> made his/her contribution to mankind by
stating in news:3f3cccf1$0$28119$afc38c87@news.optusnet.com.a u:


Hi Helen,

Sorry you've had to join our ranks My daughter was dx'd 5 years ago
and I still remember that day more clearly than any other day of my life.
It's overwhelming at first I know, but it soon becomes just another part
of life. http://www.childrenwithdiabetes.org is a good place to start (although
IMO their mailing list is too noisy). Summer is almost over, but if at
all possible, look into going to a diabetes camp with your son next year
- it's amazing the transformation that takes place at those. We actually
just got back yesterday from our first camp and everything that I'd been
told about it was true - my daughter (almost 8) now looks at her diabetes
in a completely different way (all of a sudden it's 'cool') and is now
doing her own injections, and I walked away full of hope after some
intense education sessions. The new 'smart' pumps should be available
beginning next month (where the meter beams the results to the pump which
does all the math for you) and I'm hoping to get my daughter on one of
those soon (I've been ready for a while but they won't put her on a pump
until *she* is ready)..

In the meantime, try not to let it take over your life.. sure at first
you'll be spending a *lot* of sleepless nights and making frantic phone
calls to your sons medical team, but eventually you'll be able to fit
"the diabetes" into your life and not let it BE your life.

*hug*

--
/(bb|[^b]{2})/ that is the Question

ThePsyko
Public Enemy #7

http://prozac.iscool.net

john lindberg

Helen,

I offer my encouragement--I have lived with diabetes since age
3--diagnosed in 1959. Much has changed since then, but it is not
unusual to find Type 1 diabetics who have coped with the illness for
30, 40, 50 years or more.

Previous poster suggested diabetic camps--I most wholeheartedly agree.

What you are facing are more careful control of diet and exercise than
most parents and children must deal with, plus the added incovenience
of trying to add insulin to the mix.

I switched to an insulin pump last year, and feel at this time that I
have a much better understanding (and control) of diabetes than I ever
did with injections. But, pumps and related supplies are very
expensive, and take considerable more attention to glucose levels,
diet, and activity.

Best wishes to you and your son. It seems as though the initial shock
is beginning to wear off; the next. Take your clues from your son--he
is coping, and you can too. It is great that you have a diabetic team
to help you out--share your concerns with them.

helen

Thank you Psyko..It has been an overwhelming couple of days and we are
scared and unsure of what the further holds.
We just have to accept it and get all the support you need. It is funny that
you say you remember clearly the day your daughter was diagnosed, the doctor
at the hospital said that the date and the feelings of "diagnosis day"will
remain with us forever.
My little boy ran away from me this morning when it was time for his needle.
( He is not so bad without the finger prick) I felt so overwhelmed by his
reaction that I just started to cry thinking "My God, will it always be like
this" As I tired to give him the needle he was flinching and pulling away
and it worried me that this may impact on the accurate amount going into the
site. He is okay about the diet restrictions ( but it is early days and a
novelty now) But understandably he is not so cool about the needles.I wish
he were a bit older, but there is no point wishing that. I guess we have to
be patient and reinforce the significance of his disease and the
importance of the injections without overwhelming him
Thanks again for your reply and the link. Cheers Helen

helen

Thanks John...It is really comforting to see that you are healthy and happy
while having it for so long. I guess a good deal has changed since you were
first diagnosed? You also would be able to relate to the fear and confusion
that my son may feel since you were so young too. .. This morning he ran
away from me when it was time for his insulin and I felt so powerless, I
just did not know what to say to comfort t him and encourage him> I got a
bet stressed and was very firm with him. I guess that is where support
groups come in handy.
I still feel a bit shell shocked and wish he did not have it. And I wish
that he was older and could understand it more. But there is no point in
thinking that. I guess we just have to remain in constant touch with the
diabetic team like you said . One thing for sure, I can feel comforted in
the knowledge that we live in an era where the disease is more understood
and well researched and technology is going in leaps and bounds. I just hope
that I can get him used to the ideal of needles and finger pricks tests and
yet help him to still feel normal. Returning to school also worries me. I
work part time and I have considered leaving work to be around for him all
the time. But I guess life has to go on as normal and the school already has
three students who have type one,so they know what to do and how to look
after him.
Thanks for your advice and kid words.
Cheers
Helen

*lisa*

Hi Helen~
Sorry to hear about your son, but things WILL get better. My son, going
on 5 years of diagnosis, was dx'd in September of 1998. He was 2 1/2 at the
time. It seems very overwhelming now, but it will get easier. Some days are
still difficult, but not like they used to be.
Someone mentioned the Children with Diabetes Website. It is awesome!!
They have a chat room in there and a parents list where you can find others
who have children with diabetes as well. Then if you wish, you can email
someone specifically, rather than joining the mailing list. ThePsyko
mentioned that "their mailing list is too noisy", but I personally enjoy it.
This newsgroup seems too quiet. Ü I have learned a lot more than I ever
would have without it. You can just delete anything that doesn't interest
you.
You will eat, sleep, breathe Diabetes until you get the hang of things.
Then you will be able to relax a little and things will come naturally. Like
guesstimating carbs and more flexibility. Just let your son be a kid. That's
most important. Hang in there.

Hugs,

--
Lisa, mom to Jace, 7 (5/31/96)
dx'd w/JD 9/28/98 (28 months)

mariana vivar gotschlich

"Helen" <hellz@nospam.optusnet.com.au> escribió en el mensaje
news:3f3cccf1$0$28119$afc38c87@news.optusnet.com.a u...


been


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..

I wish I would'nt know what are you living now. But I do. My son, 1 year 4
monts entered to the emergency room on July 28th. Less than a month ago.

He was diagnosed of Diabetic ketoacidosis, almost completely dehydrated, and
with acidosis. He was at the UTI for 3 days. and then was at the hospital
for 10 days.

He has now stress post traumatic. He is afraid of strangers, white dressed
people of course. and don't want to walk by his own outside, only at home.
So, what you are saying about going home... I whish it would had been an opt
ion for us.

He was so scared about the finger test at the begining, but it is being
easyer now. I think he is getting used to. About the needle, I think it
doesn't hurt him, he is a baby, he would certainly cry if it is so. He cried
sometimes but only whith the lanzet in the finger. That was so stressing.
Tears from him, tears from us, and a lot. Be prepared, you will cry a lot.
Questions?, thousands............. begining with WHY MY BABY BOY??? It is so
hard. But he is doing well. I know that telling you to be strong it is so
listened, I have been told that too many times that i can't count them.
But, hell. It is true. We have to be very strong, to get over this and not
to brieth, eat, and sleep diabetes the rest of their lives. Just for some
time.

In the mean time, I've heard the lispro insulin (ultra rapida in spanish
sorry, I guess it's ultra fast in english) is the better option for kids.
And you can give them the shot after they eat, so that's less danger, if
they don't want to eat. We are doing that and he is being from 67 to 180
most of the time. But in babies is a little differente, because they are so
unestabled.

About the needles we discovered a needle free option that maybe we are
buying but it is expensive.
Maybe you should read this:
http://www.childrenwithdiabetes.com/d_06_352.htm

http://www.advantajet.com/mainsite.htm

I wish you luck, and write me whenever you want.

Hugs.

jackie jacombs

Hi

I have a daughter with type 1 diabetes diagnosed at the age of 4. She is
now nine. The Children With Diabetes web site based in the USA have a
mailing list for folks living in Australia and New Zealand also one for the
UK (which I run). To find out more and to subscribe go to : Its a great
group of people I belong to the Aus/NZ , the UK list and the US list. The
Aus/NZ and UK list "talk" in mmols so are sometime easier to understand and
both the Aus/NZ and UK groups seem to use many of the same insulin regimens
and have the same diffuculty with lack of pumps avaiable or Drs with
knowledge of them.

http://www.childrenwithdiabetes.com/people/mailinglists.htm

Things do get better.


Jackie J (UK)

helen

Hi Lisa,
thanks for the reply.
It has been a very troubling time....I can barely sleep or eat and
certainly can not relax.
I hope things get better, it is just so overwhelming. We are having
fluctuating levels and that makes it hard.I scrutinise what he has eaten and
so far I have eliminated many things from his diet.I have found some good
books on the GI index and have pretty much brought mainly low GI and thrown
out the stuff that I think is bad
Every time he goes to the toilet I stress and think he is high and mostly I
have been correct. When you get told to check for keytones you panic. But
just before lunch today he was at 4.6 and I became stressed,
I have been crying every day ( is this normal? Will I stop and be able to
smile again?)
People tell me " Well at least it is not cancer" And I say "Oh yeah..." and
yet think they have no idea what they are talking about. It will change his
life and not for the better.
Your son was diagnosed quite young wasn't he? It makes them practically
babies again..that is how I feel anyway ...
Thanks again for answering....sorry I am such kill joy at the moment..I am
still feel overwhelmed by it all...
Cheers
Helen......

*lisa*

Hello again Helen~
I just wanted to answer your question about crying. We are closing in on
5 years next month. I still cry. Not every day, but often. And I am one of
those people who feels it is okay for Jace to see me cry. When he does, (not
often), we talk about it and talk about how I cry because I am sad, but
happy. Sad he has it, but happy he is still alive. Sad that he has to go
through the pain and torment, but happy that he can live and do the things
kids are supposed to do. Sad that he knows how to count carbs and that he
knows things a 7 year old shouldn't have to know, but happy that he is so
smart and learning every day.
I don't scrutinize all that Jace eats. I let him have the occasional
treats. I haven't eliminated anything from his diet. I just let him have
things in moderation. I don't want him to be denied the joy of childhood.
Lucky for us 7-11 has sugar free slurpees! Ü That was so hard for me to have
to allow slurpees at only certain times when I could cover with insulin and
very seldom. Now he gets them about once a month. Today we discovered they
have Diet Pepsi ones as well as the Crystal Light ones. I think that people
are becoming more aware of the needs all the time.
Yes, Jace was young. He was such a baby in my eyes. And I remember the
day like it was yesterday. I can still see certain images very vividly. It
will never completely go away, but I can promise you that it will get
easier. Baby steps. The best thing is the support of groups like this. And I
*love* the Children with Diabetes web site. Lots of good information there.
There will always be hills and bumps along the way, but it smooths out
little by little. Jace went back to school in the second grade this year. I
felt like we were starting all over again. I had led myself to believe that
it would be easier since we had already done full days last year. But it
wasn't. I cried. I kept my phone on and close by all day. We had to adjust,
but we did it and things are starting to smooth out. But we still have
adjustments to make and we will keep making them. We do what we have to do.
It IS very overwhelming. And exhausting. And tiring. ETC....But you can
do it!!! You love him and you will do what you need to do to help him.
Hang in there. It is a long road.

Hugs,
--
Lisa, mom to Jace, 7 (5/31/96)
dx'd w/JD 9/28/98 (28 months)
"I have a new philosophy. I am only going
to dread one day at a time." - Charlie Brown

*lisa*

Um...Helen....we are going on 5 years and I am STILL in that phase! Ü Every
now and then, it strikes.

But, you need to relax. That way you will think of other things like how to
help your son and then the what ifs aren't as likely to happen. I noticed
that one I learned to relax, it was much easier to Jace. He wasn't so upset
adn nervous if I wasn't. He relaxed more and things were easier for him. I
was glad that they were better for him. He still gets nervous and sometimes
tries to run from the needle. But we can reason better now. And it is fast.


I don't think one ever feels "normal" again. But the best thing to do is try
to feel as normal as possible. Do normal things. Let him be a normal kid as
much as possible.

Hang in there.

Lisa