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Subject: [IP] camps, pumps, parents - lend me your ears :-)

Title: Subject: [IP] camps, pumps, parents - lend me your ears :-)

Ellen wrote:
  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?

  If they are calling themselves a diabetic camp, they CANNOT exclude a diabetic child on a pump. This is discrimination, and I really can't see why this needs to be explained. This exclusion affects EVERYONE with a pump. In 23 years as a IDDM, I didn't really ever come across discrimination until my 5 yrs old was Dx'd. Then you see it in schools, camps, day care, etc. If you encounter it so often that you choose to send your child to a camp where they can interact with children with the same disease, being monitored by medical people trained to treat them, then get told you can't send them there either. Where can pumpers go? What if more camps started doing this? What if there were only a handful of camps that would allow pumpers entry, and they were too far to travel to? This camp made no "concerted effort" to bring the camp up to speed. They refused entry due to lack of knowledge/experience with pumps (mostly to prevent a lawsuit), they refused to be trained free by a CDE pump trainer by the mother of one of the pumpers, and only relented when the media and the Lions Club executives were brought in. Insulin Pumps are not new devices, that the diabetic community and its service oriented facilities need to be brought up to speed on. By view of the Minimed stock, and other pump Mfg like Animas, pumps are becoming more and more common. The results of the DCCT are proof that it's the better way to control DM. Why are they not current in there treatments. Although pumps require more knowledge, if you've grasped the basic DM fundamentals, you're more than half way there. Why didn't they post it on their pamphlet if they are not ashamed to exclude pumpers. Did they think they would never come across such a child?

Ellen wrote:
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. 

Although a child might shake his head in agreement and give you a big hug, I don't know many kids that will buy that, and not walk away wondering if they didn't have the pump they could be attending camp. Can a Mother try frantically to squeeze her diabetic insulin pumper child into another camp at that point, when all other camps are started, and enrollment cutoff dates have lapsed? When the child is bored at home, after looking forward to going to camp, will he be feeling fortunate he has the newest technology clicking away on their hip, or will they start hating the pump for the problem they see it caused.

Ellen wrote:
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. 

Ellen H. Ullman

No one was angry at parents offering suggestions, nor am I angry at you for your suggestions. The actions of the two parents of the children was with gentle steps. They offered to have the camp trained, even at that late stage of uncovering such disturbing news, as to save the situation, and to afford their kids entry to the camp. The camp refused outright. What exactly did they do incorrectly? What gentler steps could they have taken that would have worked? The only thing that worked was making a federal case out of it (he who screams loudest gets what they want). I don't believe that should be an approach to any situation, especially with advocacy. You need to finesse them, appeal compassionately, show them you are strong and won't back down, and conduct yourself with a mature confident attitude. If that fails, you need to become more aggressive, which was the case with this situation. As it turns out, the camp finally agreed to allow a CDE to pump train them. Carolyn did not allow her son to go, but the other child did. Their efforts paid off, but push had to come to shove before they would relent, and that's disgraceful from a camp that caters to diabetics.