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Camp Clara Barton Advice

Discussion in 'Parents of Children with Type 1' started by sneakermom, Jul 14, 2014.

  1. sneakermom

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    Our daughter is over the moon the be able to attend Clara Barton this summer for a two-week sessions. She has been selected to be a part of Dr. Damiano's bionic pancreas clinical study. This is something she has wanted to do for a long time now. My question is this: can anyone whose been to Barton give me any tips or advice. We are not locals to the camp and are traveling a long way to get her there. If you think of something that helped your girl at camp, or something that is a must have, please let me know! It's so exciting! And I'm so going to miss her while she's away :(
     
  2. Sarah Maddie's Mom

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    Can't help with camp tips, mine never wanted to go, but so COOL about the BP participation! Please let us know how it goes and how your DD feels about it.

    We've visited the Barton Camp, it's lovely, I'm sure she'll have a great experience!
     
  3. Beach bum

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    I am picking my daughter up Friday after 3 weeks there. The camp is fantastic, they just made so changes to the staffing and all I can say is they are absolutely fantastic. LOL, I am biased as the nurse director is our former clinic nurse and we love her to pieces. Also, the camp director is a former camper who has moved up through the ranks and she is great. I have noticed in the pictures that the girls are really active this year, a bit more than years past it seems. I suggest sending a package of fun stuff for your daughter to open and share. We sent pens and note pads and the glow bracelets. Also sent her with a pillow case and fabric markers so she could decorate and have friends autograph.
    DO: Tell her to have a fun time and that it's OK to feel like she's not missing you.
    DO: Tell her that you'll miss her, but you know she'll have a blast.


    DON'T: Tell her in letters that you miss her.
    DON'T: Make a big deal about leaving, and don't be surprised if she is too cool to give you a big goodbye. Expect to get the Heismman hand;)

    It is so cool she gets to participate in the study. Would love to do it, but we are already in a study and cannot participate in others. Plus, it wasn't offered this session.
     
  4. jenm999

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    My son is there as we speak! At the day camp, which is on the same campus as the girls' overnight camp. He's loving it and I am truly relaxed for the first time since diagnosis knowing he is getting expert care. A lovely program, a beautiful campus.
     
  5. sneakermom

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    Thank you so much!!! This is reassuring info. Beach Bum...I am trying to figure out how to pack her all up. Do they have little spaces for clothing or do they live out of their suitcases? I feel like I'm moving her in! LOL
     
  6. StacyMM

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    I read this last night and actually teared up. The very idea that my daughter could experience something like the BP project makes me cry to even think about. She's never known life without diabetes and when I read the adult participants' stories about how amazing it is, I want it for her so badly. My son was diagnosed later and while it would be fabulous, I just think about all those PWDs out there that that have never had a day off in their memory...and I get all emotional again. *sniff sniff* I hope that your daughter has a wonderful time and is able to get a taste of the freedoms from worry that other participants have mentioned.

    Plus, camp is awesome. We've had at least one kid in camp every year for several years now and they are always so filled with fun and excitement at pick up :) Our camp is shorter so I can't give you any good advice but I'm sure others have/will help out there. I just wanted to share how truly thrilled I am to know that there are kids in this study and that it's even cooler that it's someone I 'know' (in a virtual, complete stranger sort of way - LOL).
     
  7. Beach bum

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    They have a rolling drawer under the bed and a shelf with hooks. Lol, they will live out of suitcases too! A lot of kids use clear Rubbermaid containers to keep stuff in.
     
  8. sneakermom

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    Thank you so much, Stacy...so sweet. She will wear the BP, not only for herself, but for all of our kiddos. Let's hope it comes to fruition sooner rather than later. They all deserve a "day off"...and so do we!
     
  9. sneakermom

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    This is exactly the info I needed! xoxo...Thanks!
     
  10. mamattorney

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    I thank you for this info, too. My daughter leaves for camp on Sunday (not Clara Barton) and I'm unnecessarily worried about the packing/logistics situation. Until I read that comment about Rubbermaid Containers, I completely forgot that since she will most likely be walking to the bathroom to shower, etc (only a third of the cabins have an attached bathroom) and she's going to need some kind of bucket to carry her shampoo, soap, toothbrush, etc. I hope she isn't the most ill prepared camper there!
     
  11. sneakermom

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    Just curious if you were planning to have her wear her Nightscout CGM in the Cloud while at camp...How cool would it be to keep track of her numbers while she's there!?

    I really would love to do this with DD, but being that she is wearing the BP, I can't ask her to carry yet another device (or 2).
     
  12. mamattorney

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    No, in fact, at this point, she's not even going to wear her dexcom at camp - they allow them, but don't welcome them with open arms or anything. I'm wondering if she'll have a last minute change of heart though. We went 48 hours without one while we waited for a new receiver to arrive in early June and she was very anxious about the overnights and kept repeatedly reminding me to test her at night, so I think it will be a little hard for her to voluntarily give it up for a week. I wish there was a way to just wear it at night - she's fine all day long, it's just nights that make her twitchy.
     
  13. MomofSweetOne

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    She could turn off the receiver and put the receiver in her tub for the days? Or ask the staff to keep it where the Omnipod PDMs are kept between meals.
     
  14. StacyMM

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    I think that's a great idea. If she isn't concerned about days but has night anxiety, then using it just at night would be great.

    My kids' camp doesn't use the CGMs but they don't care if the kids do. My kids use them. They just carry them in their pocket or belt like usual. They both love the CGM and it gives them security so I wouldn't try to take it away. My son would miss it less but my daughter would be really upset. It's their peace of mind so I just send it and hope it comes home with them :) If they lose it or damage it, I would buy a replacement, but it's that reassuring to the kids that I wouldn't remove it. If your daughter wants it, I say figure out a way to make it work. I really like MomofSweetOne's idea, though - turn it on after dinner, calibrate it before bed and keep it on her pillow. In the morning, she can shut it down again :)
     
  15. Beach bum

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    Don't do it! Camp is a break for parents too! IMHO, take a breath, step back and enjoy the time to recharge your batteries too and forget about diabetes for a few days. I felt guilty the first year, but have now come to realize how important this time is for my husband and I to recharge and be diabetes free for a bit.
     
  16. mamattorney

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    Not only are you wise and 100% right on this issue, I just realized that we couldn't anyway. While the camp allows cgms with a bunch of caveats - it has put cell phones on the prohibited items list. So, even if she wears the cgm at night and I wanted to, Nightscout would not be an option.
     
  17. susan0909

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    I am so glad that this post came up now! My son is scheduled to off to Camp Joslin for a week in August and I am very stressed. Despite my best efforts to control his BG over the past year since diagnosis, the best I can say is that he is consistently inconsistent. Example- last night new pump site. Usually I have needed no dose alteration for blouses after a new pump site-. This time I even decreased it by 20% because he was at a friend's house and I was trying to avoid problems. Don't you know it, at an hour past bolus, his CGM was 93 double arrow down. Wound up giving him 14 GM of sugar just to maintain him at 60 though the peak insulin action. We have a pump and CGM 24/7 and I am just about to try the CGM in the cloud to get some peace of mind while I am at work. But I am worried that they won't catch his lows at camp and he doesn't even feel them unless he's under 50 and headed lower. He's also 8 and like all other kids has at times ignored the CGM alarms to finish his beloved soccer game. .. Anyone have experience speaking to the camp directors over there? And how receptive are they? Joslin is his pedi endo, so that does make me feel a little better. But walking away from the constant control I have over his T1D for a week is quite honestly freaking me out. My son really wants to go to camp. His sister (non T1D ) just came back from 4 weeks at sleep away camp and is of course raving about how fun it was.
    I don't want to deprive him, but am I being realistic?
     
  18. Sarah Maddie's Mom

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    Why? Because all the other diabetic children at camp have superior parents who have figured out that which you, clearly, are not intelligent or caring enough to do? that is achieve consistent and stable glycemic variability? :tongue:

    You ^^^ described pretty much every kid with Type 1. They ignore the alarms when there's some thing more interesting happening, they throw unpredictable and mystifying numbers at you when you least expect them, and even when the feel their lows at 60 the sometimes wait to get that "low-low" feeling before treating. It's all part of the package, it all comes with the territory.

    I would follow the camp's lead on this. They will certainly do things differently than at home, but they do know what they are doing and the likely have seen it all before, and some.

    Hope he has a terrific week! and that you get to relax, even if it's just for a bit :smile:
     
  19. Beach bum

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    There is absolutely no reason to freak out, and absolutely no reason on the face of this earth why he can't go to camp like his sister. You are fairly new to this so you just have to come to peace with the fact that he will go away for a week and be cared for by someone else. Where else would be the perfect place for him to go but diabetes camp?
    Let me tell you this. We went to clinic the week prior to camp. We go to Joslin also. Our nurse gave us our new changes, which we did automatically. Then she looked at the sheet and said "you know this will all change at camp anyways!" Right off the bat, they will change the basal settings by 20-30%. Every camper has a buddy. Every camper is well looked after. They test the kids frequently. When you check in, they will ask if he can feel his lows, so you can express your concerns then. FYI Deb H from Joslin is now the nurse director. She is on top of things. The doctor on staff (different docs from Joslin go) is over at Camp Joslin. He will be well cared for.

    You can email the staff over there(I'd go with medical staff over camp director), but trust me, he will be fine and you won't be the first or last parent to worry.

    LOL, we've been going for so long that I'm now of the "what happens at camp, stays at camp" mentality. I do want to know how things went in general, but I don't need to know the everyday happenings or numbers, because everything will be wacky when we get home too.:eek: Sit back and enjoy the week, rest, recharge your batteries.
     
  20. MomofSweetOne

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    My daughter drops with excitement, and the first year she went to camp, I was up for hours during the night before feeding her because I didn't know this yet. Now I know that we need to drop her basal by 30% as soon as she begins the drop the day or night before and that we don't need to drop it again for exercise as we drop her off because as the emotions calm down, the extra activity will be taking place.

    For the newbies, it does get easier each year to drop them off.
     

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