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[IP] camps, pumps, parents - lend me your ears :-)
Five years ago I put my then 7 year old son on a pump. The next summer I
called the famous camp in the state and was informed by FCCYD (Florida Camp
for Children and Youth with Diabetes) that my son would feel "different" if
he was allowed at the camp with the pump. I was outraged, angry, bound and
determined to change things yada yada yada. I felt very strongly that my son
shouldn't have to miss out on a diabetes camp experience with this kind of
asinine reason - that he would feel "different". As if every child with
diabetes doesn't already know what "different" feels like.
However, in retrospect, I am glad that I never sent my son there. And I wish
that they had been honest enough to tell me they simply couldn't handle it,
rather than give me THAT excuse. I subsequently learned of another child who
attended that camp with the pump, and while at camp, the child was not
allowed to give herself her boluses to to bring down the highs, nor wait to
eat (she was using R at the time) after bolusing before eating. Ultimately
the camp had her take the pump off for the rest of her camping experience.
Needless to say her parents were livid when they found out at pick up and
their child would never return to that camp. There are usually doctors who
oversee the kids at any diabetes camp and it turns out that the doc in charge
is particularly not keen on pump therapy with children.
Another time I was told by the same camp that my son would have to be
completely self-sufficient with the pump in order to come there on a pump.
At the time my son was not ready to do his own infusion set insertions and I
had hoped he would feel better about trying it in a camp experience much like
children get over the hurdle of giving themselves injections there. So again
he did not attend that camp. (I soon resolved in my mind that camp is not a
panacea and have learned of lots of kids who go off to camp - have extreme
highs the entire week or two etc. . I find it most disconcerting that there
appears to be little effort to teach children that they can have full days of
fun and exercise and attempt to maintain near target numbers. Rather the
camps often run the children high to avoid lows.)
It's still nearly impossible to get many pediatric endocrinologists in this
country to learn pump therapy and to initiate it in their littlest patients
in spite of the fact that pumps have been around for over 20 years. This in
itself is abhorrent enough. But how then do you expect for the little camps
that run only 1x per year to do the impossible and manage the one or two pump
patients when they themselves haven't learned about pump therapy? There has
to be a time period, an educational window, for the camp to learn and get up
to speed. If they admit that this year they can't manage the child on the
pump but will make a concerted effort to bring the camp up to speed by next
year, would this not be a compromise?
As for the children feeling hurt, it can be turned around. One can tell
their child that their child is very fortunate to receive the best care and
the newest technology and not every medical person understands the device
even as well as the child him/herself. . And that together as a family and
a community we will come together to teach the camp to be able to manage the
pumping children who will go next year to the camp.
You would be hard pressed to find anyone on earth a more pro-pump advocate
for children with diabetes than I. However, being angry in responding to
parents who are offering suggestions from experience or to a camp who
honestly cannot safely manage the child at this time, doesn't solve anything.
My 12 year old has had diabetes for over 11 years now and IMHO everything
with diabetes is a process and some things require smaller gentler steps to
make it to the goal.
Very sincerely yours,
Ellen H. Ullman
Mom, Advocate for children who have diabetes and their parents, Friend,
Please support funding a cure for diabetes. My favorite charity is the
Diabetes Research Institute in Miami, Florida: <A
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