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Diabetes camp. The good the bad and the ugly.

Discussion in 'Parents of Children with Type 1' started by C6H12O6, Sep 16, 2014.

  1. C6H12O6

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    I am just curious about your opinions. I feel blessed to now have a lot of insight into the inner workings of a D camp. I also find it awesome that there are so many academic articles about D camp.

    I think D camp is a wonderful place, but I also know a lot of parents would be less than happy with some of the medical management. There’s not a lot of transparency with the medical protocols, and some of the management issues go beyond protocol issues.

    I am really conflicted about D camp.
     
  2. Megnyc

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    Can you elaborate?

    Are the issues related to protocols/standing orders not being followed or more the actual details of the protocols?
     
  3. rgcainmd

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    My daughter attended D-camp for the first time this past July/August. She had a wonderful time, and as far as we're concerned, her diabetes was managed wonderfully. CGMs were not allowed (I respected their decision), but everyone was checked twice each night. I had heard that they let the kids' BGs run a little high to prevent lows; in reviewing pump info after DD's return home, her numbers were not ridiculously high. I had expected them to change her pump settings and was pleasantly surprised to see that her settings had not been changed; they ran the kids a little higher by underbolusing meals a bit. Two MDs were present 24/7 during her camp session. I heard of no disasters, no dangerous lows, no one going into DKA, no one needing to leave camp for any reason, medical or otherwise. I have nothing but praise for the D-camp my daughter attended (Gales Creek Camp in Oregon.) Granted, that's only our experience and I was not present 24/7 to observe the inner workings of the camp nor how it was managed. All I know is that my daughter had a great time and she returned home safe and sound, none the worse for wear. She wants to attend two sessions back-to-back next summer and if I can afford it, she will. I hope to hear that nothing unfortunate or dangerous happened to any children who attended D-camp this past summer.
     
  4. wilf

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    Sounds like you were maybe on the inside this time, helping run the place. What a wonderful opportunity and experience. :)

    Before sending our daughter to D Camp the first time, I spoke with a very respected and trusted family friend who happened to be a retired pediatric endo in Germany who specialized in dealing with juvenile diabetes. He had helped run a German kids D camp as a volunteer for over 20 years.

    He said that if your goal was perfect management of the diabetes, then you shouldn't send your kid to D camp - because there was no way of achieving perfection with that many children unless you spent all of your time and their time managing the diabetes.

    He said that D camp offered many positives, for parents and in particular for the children. For parents, a break from dealing with their kids diabetes. A chance to recharge, pause, and reflect on how things were going. For the children, a chance to have a lot of fun and freedom, to be "one of the crowd" and learn from their peers about tricks and management techniques they used to get by. And for those children of perfectionist parents, it was a chance to experience some freedom and learn that there was a reasonable minimum one could do to get by at special times or during special activities.

    My guess is you may be having issues with how they were defining and achieving that "reasonable minimum" at your camp..
     
  5. mamattorney

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    My daughter attended camp for the first time this year too. All in all, after hearing my daughter's version of events, I thought they were a little "unyielding" with their protocols. It was - test for ketones every time you were over a certain number, no matter what. It was correction by syringe every time you were over a certain number no matter what. One night my daughter's pump became detached - the cannula part was still in her body, the pump tubing and connector were fine, she just didn't connect it all the way after her shower. With no cgm, it wasn't caught for a few hours, but when they caught it, she just wanted to attach the pump and correct, but they made her correct by syringe and change out the site. She told me the story with such irriatation - Mom, there was nothing wrong with the site, it was just disconnected - and they made be change it out anyway! A very rigid application of the rules. I told her it probably just had to be that way with so many kids, they couldn't just bend the rules willy nilly, and an extra site change or injection wasn't going to kill her. She, of course, reluctantly agreed, and is anxious to return again next year.
     
  6. C6H12O6

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    Well one thing I learned is the degree of night time hypos that kids are completely oblivious to is downright scary. We night tested counselors and campers.
    There were kids and young adults (counselors ) who would be in the 2’s (36 ish) and sound asleep.

    The irony is that the doctors are not volunteers at all (not denigrating them) - the truth is they bill OHIP for seeing each camper once a day (so 200$ x 80 a day). They also bill for seeing staff on occasion. The doctor’s are on board 100 percent about night testing at camp bc their license is on the line. Yet, they go so far as to discourage night testing at home (cough Sick Kids).

    So based on the amount the doc’s bill OHIP in theory your kids ratios should be all sorted out when they get home (but that is rarely the case.)

    I will try to elaborate more later, but I feel bad because I know Camp is a wonderful place.

    Another issue is that type 1 is a really steep learning curve, and it is hard for them to find RNs with previous knowledge. It was really hard for me not to find some of the comments I heard downright hurtful. There was a nurse who basically thought pumper’s needed pumps because their parents’ had failed in adequately managing their diabetes. She was making the most ridiculous comments about how people on sliding scales were better controlled because if their sugar was in range they got zero units. Her frame of reference was nursing home patients. There was no convincing her she was wrong, I tried to explain very calmly why she was wrong. I was on night shift with her so basically everyone is asleep. I felt like I was going to vomit. Anyone I tried to talk to about it did not want to hear it or address it.

    There was just a lot of little incidents that scared and upset me.
     
  7. C6H12O6

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    The most heat wrenching comment made by a kid – she was an injector very recently dx’d. She was genuinely scared of needles and hated injecting herself.

    A med staff girl was dancing and was like “we should have a dance party with balloons and streamers.” (She was kind of random like that) I am not sure how the conversation escalated so quickly, but the little girl said “we can have a party and throw out all the needles and we won’t have to hurt ourselves anymore.”

    I can’t even repeat that without tearing up.
     
    Last edited: Sep 16, 2014
  8. wilf

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    The issue of night testing is crystal clear to me - it makes sense to test most nights. And fie on any doctor/endo/nurse who says otherwise!

    I have no problem with doctors getting paid, and nurses too.

    As regards finding good nurses for Camp, that is a real issue. I would say that in almost every case, an experienced parent of a Type 1 child could give better care than a nurse who's just doing this on the side but doesn't have a clue about Type 1 Diabetes.

    I can imagine the experience was unsettling for you. On the other hand I'm so glad for the kids that they had someone on staff who really gets it. :cwds:
     
  9. swellman

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    Nope. I mean, NOPE!

    That't as big as I can make it or it would be humongous.
     
  10. mamattorney

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    That was my comment on my survey. It's not that the camp my daughter went to didn't allow cgms, but they made the protocols so crazy (and I now know they follow the protocols exactly) that no one would want to wear one. '

    Every single alarm would be addressed by finger stick and a treatment decision (with no common sense acknowledgement for after meal spikes or for the high/low parameters set on the cgm: someone who sets their low alarm for 90 for a heads up on warding off a low would have to test and make a treatment decision the same as someone who sets it for 70)

    Who wants to live that way for a week?

    I suggested that with the increasing rate of cgm use as a tool by young people to help them make diabetes related decisions, that they should review their protocols in an attempt to integrate them in a more "real world" manner for those who feel they would like to wear them for the week.
     
  11. sszyszkiewicz

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    Given the high energy aspect of camp, and the fragility of those Dex receivers, it may not be a bad policy. ;)
     
  12. swellman

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    We haven't lost one receiver due to "fragility".
     
  13. mom24grlz

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    i have mixed feelings about our diabetes camp. Ashleigh of course likes going and hanging out with other kids her age who have diabetes. She met her best friend at diabetes camp. The girls live about 1.5 hours away but we try to get together at least once every other month. but of course they talk or text each other every day. There was one year Ashleigh skipped diabetes camp because they annoyed her the year before. Things Ashleigh didn't like: they ran her higher (but i understand this with all the activity going on, they don't want the kids to drop low). Ashleigh didn't like it because she actually feels worse being on the higher side vs being low. I know once she was around 90 and they made her drink a juice box (i thought that was a bit much too). They put the kids on a carb schedule. And i know this annoyed Ashleigh. At check out your told how much carbs you can eat per meal, and you have to eat that much. So you might be given 60-breakfast 75 lunch 60 supper 15 snacks. And you can't go over or under this amount. There were times Ashleigh was full and she had to eat everything, because she had already taken the insulin. Of she was hungry and wanted more, but couldn't have any because it wasn't on her carb plan. Now if they see you need more or less food, most times they will bump you up or down a level. But the thing that upset me the most was night checks. I was told several times that Ashleigh would be checked at night. I even told Ashleigh to set her ipod alarm incase they didnt' come in. But the camp director told her she wasn't allowed to and someone would check her. I found out from AShleigh (and by looking at her meter) that she was checked the first night, and never checked at night after that. I knew it would happen, because in the past they don't check kids at night. I'm glad Ashleigh is done. This past summer was her last summer as a camper. She plans to go as a counselor, but as a counselor she can choose how much she wants to eat, what numbers she wants to run at, and if she wants to check her BS at night or not.

    ETA: About the night checks. it was even written in her chart to check at night, because at the time she was having a lot of low blood sugars throughout the day and night. there were times she went off the pump for 2+ hours and never got above 110. At camp they ended up reducing her basal by -70% (started out at -30% but continued to go low until they got to -70%)
     
    Last edited: Sep 18, 2014
  14. jenm999

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    The carb limits sound ridiculous.

    Devil's advocate: is it possible they checked her at night using another meter? Our camp (Barton in MA) provided meters, strips, everything... although if the test results weren't on the log sheet or whatever that probably answers your question. I would be livid if I were promised night checks that didn't happen.
     
  15. ibusse13

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    Our diabetes camp was awesome. My daughter loved it and her numbers were amazing all week. She learned so much more than she ever has in all our "education" visits at the hospital. Plus she got to meet kids her own age who struggle with the same things she does. She liked the feeling of being a "normal" kid again. She even learned how to and successfully inject herself in all of her sites. She was on the fence about getting an insulin pump. After the week at camp not only did she want a pump, but she knew exactly what kind of pump she wanted. Every camp has certain protocols. As far as night time checks they told us right off the bat the counselors would check at night only is they were low at bedtime. They did say if parents had a problem with that to talk to the staff to make arrangements. It was nice to not have to worry about her all week and I'm not going to lie not having to count carbs for an entire week was a bonus. My daughter gets a lot of attention so it was nice to give my boys a little extra time. FYI for people think they can't afford it. We were able to get scholarships. Also ask your diabetes clinic. I was told at an appointment this week that they have scholarships available and our clinic didn't even use all the money because people didn't apply.
     
  16. mom24grlz

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    Nope! someone else on another board thought that too. At Check in All campers are given the same brand of meter (this time one touch ultra 2). These are the meters that campers use for all checks, staff does not keep extra meters around for night checks. actually the staff doesn't check the kids themselves, they wake the kids up and have them check their own sugar. No one ever woke Ashleigh or anyone else in her cabin up other than that first night. Last checks were around 11pm before heading to bed and then again anywhere from 6am-8am.
     
  17. packmule

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    My wife and I took our 6 y/o son to Gales Creek Camp in Oregon last weekend for the family day camp. We had a great time and our son wants to go back next year. Day camp allowed us to see camp protocol in person, ask questions, meet new T1D families, etc. I was really impressed with how they manage D for 60 campers. They do midnight and 3 AM checks for overnight camps, and supply Ultra 2 meters and single use lancers. I'm not fond of the "No CGM" policy, but I understand it. Managing D as tightly as we do at home just isn't possible without detailed knowledge about each camper. Next year, we'll do the overnight family camp and after 2nd grade he'll be eligible for the week long camps. At this point, we're really looking forward to it and feel comfortable that our son will be well cared for.
     
  18. shannong

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    I've never sent my son to diabetes camp and probably won't for a very long time. The primary reason is that his night time blood sugars have always been difficult to manage. The diabetes camp in our area has a policy that if they are below a certain number at bedtime then they will check again at midnight. Honestly, my son could be sitting at a good number but be dangerously low within an hour or two of going to sleep (just happened to me last night). His numbers just vary greatly, especially if you throw in a lot of activity during the day. He has a Dexcom and for me that would be an absolute must for someone to respond to the alarms at night. I just don't think that the level of night-time checking that he needs would be there. When he is older and can respond to the alarms himself, I would consider sending him if he wanted to go.
     
  19. C6H12O6

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    You could likely have your kid put on the permanent night testing list. I know the camp I was at had kids that were on the permanent list.
     
  20. shannong

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    Good to know! Thanks.
     

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