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Just picked Kelly up from school...

Discussion in 'Parents of Children with Type 1' started by mcphelster, Mar 6, 2015.

  1. mcphelster

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    So he had a low at 2am last night or on the verge of the low the RN CDE gave me...103, they said under 100 at 2am, give him a cup of milk and retest after 15. Well, at 103 I let us all sleep an hour and half and tested again and it was 92, so I woke him and gave him the milk and retested and it was 126, so back to bed we went. He got up, ate his 75 carb bfast and was off to school only to get a call at noon saying his stomach hurt and he felt nauseous, his number at the point was 89. The nurse said that this was a perfectly good pre-lunch number, but agreed with my decision to come get him and watch him at home. He also had a temp of 99, which is nothing, I know, except that he never runs normal, always way below, so that 99 means something. *sigh*

    Tonight Kelly is supposed to go camping with his Boy Scout troop, his first camp out with his new patrol of which he is the patrol leader. I don't think I can let that happen. It's been 2 weeks since his diagnosis and these night time fluctuations scare me, even though I know it's perfectly normal for them to be happening. Poor guy, I just wish we could pinch ourselves and wake up from this crazy dream. Wah wah wah, big ol' baby here, lol.

    That's our story for the moment.
     
  2. nanhsot

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    With all due respect to your CDE, I would absolutely not treat a 100 in a honeymooning kid. His body right now is working to keep him at that 100 number and feeding it will just wear out what functioning cells remain, IMHO. I'd watch it for sure, retest as you did, but I consider a 100 at any time of day a major success! I know you are new to this but these are the numbers you want, not worry about.

    One of the hallmarks of honeymoon is that they'll wake up at that 95ish mark, every time. That's part of honeymoon and I guess I'd question why you need to treat it. We were told to treat anything under 70 at any time of day, but we were also discharged with corrections at night, so every endo has their own way of doing things. I'd just ask what their reasoning is to better understand it.

    Newly diagnosed kids often feel bad at good numbers...their body was accustomed to being high so numbers like 89 feel low. It'll get better as his body readjusts to being in range more of the time.

    Hope the temp was just a fluke and he's feeling better soon. Can a family member who is familiar with diabetes attend the camp with him and help manage things?
     
  3. aprilodell

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    Hey..we are 2.5 months into this. When we were just a few weeks out my son would feel low at 100 because he had lived in the 200's and higher for so long. If he had symptoms such as shakiness etc we would treat, but if he just had a lower number and did not feel it we would be ok. We now only find that he has symptoms under 70...or when he is in the 70's and we think it is dropping still. He is honeymooning now and things are relatively stable, but it is hard to have them go camping so close to the diagnosis, I get that. Are one of you able to go along as well as an adult volunteer. My husband always has gone along so it would not be a new thing for either one of them. We have forgone camping until they leave for Sea Base in the Bahamas. That one will be worrisome for me..but I want him to be as independent as possible.

    If you treat a low make sure once he is up to give him a 15-20g solid snack. This will help sustain him. Things do loosen up as he gets to know his own body.
     
  4. Cheetah-cub

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    Agree with nanhsot, your son's numbers are all in range, I would even consider them very ideal.

    I understand your reaction though, you guys are still very new at this. I still remember those early months, we were always on pins and needles. I think when we were first diagnosed, we were told to send our child to bed above 100, and we treat low if she is under 70 at 2AM.
     
  5. aprilodell

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    We have been told to not have our son go to bed under 130.
     
  6. njswede

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    I'm about 5 weeks into it, so I'm very aware how you feel.

    One thing our endo told us was "Don't try to make it too perfect! You'll kill yourself!". We're trying to keep DS in the 85-160 range at all times. Our endo tells us that's perfectly fine numbers. We try to have him at 130 at bedtime. He then wakes up in the high 80s. Every time. Like clockwork. You'll soon get into the same groove and just go with the flow!

    I'm currently testing him at midnight and if he's below 100, I do one or two more tests during the night, otherwise I'll let him sleep. Our endo said that was perfectly OK, at least for now. I know other endos disagree, so YMMV.

    Another thing I'd like to point out is that the BG meters don't seem to be 100% accurate. Sometimes, when I get a strange reading, I try another finger on another hand and get a completely different reading. So, IMHO, if you're fluctuating between 100-130, that's fine and pretty much within the margin of error. My experience is that they seem to have a margin of error of at least 15%. I'm sure someone more experienced can chime in about meter accuracy!

    I find this site to be a very good source of knowledge and encouragement for us newbies. Just knowing that there are people out there who have survived over a decade dealing with this crap is encouraging!

    Here's to the long grind ahead of us!
     
  7. quiltinmom

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    I can relate with hesitation about sending him on a Boy Scout campout. It's hard not knowing if the people in charge really get what they're supposed to do....no matter how many times you tell them. It's hard trusting someone else to know how to handle diabetes.

    That being said, those numbers don't seem like large fluctuations to me. I was told 60 was low, not 100. But follow the advice you were given. You'll get the hang of it.

    I usually support doing your best to let them live life as much like they would before diabetes as possible...but at 2 weeks past dx I would understand keeping him home. Especially if he's coming down with something. Follow your gut on this one. And see how he feels about it. :)

    And no, you aren't stressing over nothing. It is definitely worth being concerned about. I was nervous about everything for a lot longer than two weeks post dx. :). That first day back to school was tough.

    You're doing great, mom!!!! Someday he will thank you. Maybe.
     
  8. njswede

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    We just sent our kid for his first playdate away from home. It's only for an hour and the house he's going to is a couple of minutes away from ours, so there's very little risk. But still, that felt like a big step. And an important step for him to regain some sense of normalcy.
     
  9. sszyszkiewicz

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    Its probably too late, but having alot of experience with scouts and scouting, hopefully there was additional planning on everyones part before a camping trip. Physical activity will really drop his numbers and the adult leaders there need to know the situation unless you or your husband already volunteered for the trip (I was a scout leader for my sons troop). As for the 99 temperature, if that is still there I wouldn't send him, diabetes or not.
     
    Last edited: Mar 6, 2015
  10. mcphelster

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    He didn't end up going even though my husband is one of the ASM's (Assistant Scout Master). We decided that with all our night time fluctuations these past few days, that it would be for them to sleep here tonight and head out to camp first thing in the morning. :)
     
  11. sszyszkiewicz

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    There are always going to be fluctuations. The most important thing for scout camping is the planning. Making sure the insulin doesn't get too hot or too cold. 2 meters. Extra everything. A place for the sharps. First aid training for his friends in the troop (they would love that I bet).

    It's great he gets to go tomorrow and it is terrific your husband is an ASM! He will get to see your son do great things. T1D will not hold him back at all. Patrol leader is a big deal!
     
  12. mcphelster

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    It is a big deal and before now he didn't really want it, he loved being a den chief and some of the other positions he's held, but he's excited for this now, we are very proud of him. He is a Star scout and very close to ranking up to Life. He's been in scouts since 1st grade as a Tiger. :) Thanks for the advice on what to be concerned about when camping, I appreciate it!
     
  13. BarbDwyer

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    Congrats to your son on all the scouting achievements!

    We were instructed to treat below 100 at night too and for us it was a good policy. He needed a higher amount of insulin those first 3-4 weeks (and his bg was still high) and then his insulin needs steadily decreased with a significant initial drop. Lots of lows at night all of a sudden.

    Now that we are past that, more familiar with his reactions, and also a little more comfortable with what we are doing (both adjusting insulin sooner and managing exercise) we don't treat until below 80. In the beginning it also took a lot of carbs to get him up so when he got down to 60 or 70 he didn't want to eat/drink that much in the middle of the night. We are discovering now that it takes very few carbs to shoot him WAY up there. Just different.
     
  14. quiltinmom

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    totally agree with this! On Ds's first campout, when I dropped him off I brought the glucagon kit to show the leaders, and teach them how to use it. All the boys gathered around. They were really interested in it.

    I wanted to make an impression on them that taking Ds's low snacks was not a game, and so I told them that if his blood sugar went too low he could die. I was a little more dramatic than I needed to be, but I wanted the effect. Most of the boys shrugged it off but I think I kinda scared one of them. He was extra concerned about my son for the next few campouts. I was glad he was helping remind Ds to test and stuff. And so far nobody has touched his stuff.

    I think it is good to get the other scouts involved in knowing what d is, and what to do in an emergency, what to watch for (because leaders may be otherwise occupied and not notice right away). Not only for your son, but perhaps they will meet another type 1 someday and need to know what to do.
     
  15. Sarah Maddie's Mom

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    One of the things you learn right away about having a type 1 kid is that everyone manages things a little differently. As such, I would cut off my right hand before I told my kid's peer group that she was likely to die if she didn't get a juice box. Neither is right or wrong, they are just different approaches. In the end you have to come up with ways of talking to "outsiders" about the risks that is comfortable for your family, your kid and that is yours alone.
     
    Last edited: Mar 8, 2015
  16. aprilodell

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    My son is scheduling his scout master conference for Star. My husband would love to be an ASM and would be if someone would take over his membership chair position, he does go on all of the camping trips and I also think just being prepared is a huge thing. We are going to do an inservice with the group going to Sea Base Bahamas before they leave, to talk about his emergency supplies (not that I think kids will steal the candy etc that we have for lows, but you just do not know) and what signs to look for. We are hoping he will be on a dexcom by then, so my hubby will be able to hold onto the receiver and see what is going on while my son is working. We also just plan on keeping him higher, as we know he will be burning a lot from the energy and the sweating. We were signed up for Plilmont next summer, but I think we are going to pass hiking 50 miles may just be too much, plus my son also has flat feet (like Fred Flinstone), so that is just too much hiking on that.
     
  17. quiltinmom

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    I totally get where you are coming from. A group of girls and a group of boys are completely different things. :). With boys, things can get out of hand really quickly. I've heard too many stories of what goes on at scout camp! I would never even consider saying what I said to a group of girls (or a mixed group). They would be scarred for life! It depends on the nature of the group.

    I guess you had to be there...I wasn't overly dramatic. I didn't say he would die without a juice box. I don't remember my exact words, but like I said, most of the boys shrugged it off. Had I known the one boy would be so concerned I might have done things differently. But they know that taking his low snacks is not a joke. Now I'm not going to say any more so as not to further derail this thread.
     
  18. Sarah Maddie's Mom

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    I only offered my differing opinion for the OPs benefit. Being just two weeks in and anxious about "lows", so that she could see that there are varied ways of managing talking to peers neither of which is, "right: or "wrong".
     
  19. mcphelster

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    Thanks everyone, I appreciate everybody's advice and hearing how you all have handled your different but similar situations. I really love that I found this site, your support is so awesome and makes me and my hubby feel less alone in this. :)
     

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