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please anyone help, scared mom

Discussion in 'Parents of Children with Type 1' started by hopefaithlove, Dec 28, 2015.

  1. hopefaithlove

    hopefaithlove Approved members

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    My son was diagnosed 3 years ago with type 1b diabetes. He was 19 months old, islet cell negative, a1c 6.8 and not in dka at time of diagnosis. He's always been really sensitive to insulin, we spent 2 years on diluted Humalog and .5 to 1 unit of lantus. When he finally was taking enough diluted insulin to transion to regular strength Humalog, we started pushing for a pump. Our endo said the diluted couldn't be used in a pump because the concentration is too varied. July we started with omnipod and things were going fine.

    2 months ago we experienced our first severe low-glucagon-call 911. It was terrifting, but we made it through. 2 weeks ago another severe low at daycare, 35 bg and dex arrow down. This one has shaken me up so much more. He was running .10 basal and bolusEd .20 for breakfast (1 to 200 carb ratio). In the last 2 weeks. We have been running 24 hour basal of .05 and giving .05 corrections when above 300 and staying there on the cgm. Yesterday we ran .10 basal for the first time from 3 pm until 1 a.m. he was showing a need for more basal during this time.

    This morning running .05 basal, ate breakfast 28 carbs, no bolus. At 1030, bg 95 and 1050 bg 50. Cgm arrowing down. 46 carbs later lower 200s. I suspended all insulin delivery and placed another call into endo. I don't know what to do. In terrified of giving my son even the tiniest bit of insulin. Literally the picture of someone in panic mode. I don't know from day to day how his body is going to react to even the tiniest amounts. Obviously his body is still making its own insulin. Docs say honeymoon is rare 3 years out. MODY testing was all negative. AnyoNE heard of anything like this? Suggestion ideas I welcome it all. I dont know how to keep my little boy safe anymore and it's consuming me. I go back to work next week and don't know how I'm supposed to have daycare manage him. Help!
     
  2. jenm999

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    I don't have any advice but I'm sure others do. Just wanted to send strength to you for what sounds very scary and stressful. Hang in there.
     
  3. Dad_in_Canada

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    Indeed it sounds quite stressful. It sounds like your son is sooo sensitive to insulin.

    A few ideas:

    1. I'd ask for a better explanation from your endo on why diluted insulin can't be used in a pump. We've never had to try it, but what I don't understand is that if it worked well for you with shots, why it can't be used in a pump. I'm assuming a diluted insulin can be homogeneous, especially if it's left to sit for several days before use, and the insulin & water have time to blend. Obviously ratios & basal rates are *very* different when using diluted insulin, and the pump manufacturers only recommend U-100 insulin, but in your situation, I'd dig a bit deeper.

    2. Try a different site / body location where the infusion set is less effective (ie. not as good absorption). Here's what I mean: we've found that certain areas of the body, eg. lower back, love-handle area, are less sensitive to insulin, and we'd need up to a +30% increase in basals if we used those areas. Stomach areas are much more sensitive for us. If you can find an area where insulin absorption isn't as good, it may help you. Try lower back, upper bum, etc to see if it helps.

    3. Safety first. Run his BGs higher until your stress reduces a little, and then just creep up the insulin very slowly over many days.

    4. At your son's age, there is probably a ton of activity, running around, etc. It'll make his body even more sensitive. Have small, uncovered snacks before all activity.

    5. If the minimum basal rate (0.025) on the pump is too strong, then use every basal segment / time available in your pump, and set some to zero if needed. The goal here is to use the zero intervals to lower the average basal rate over a few hours, to something less than the pump's minimum programmable hourly rate.

    6. Look for a time trend of lows on Dex. If they seem to occur at roughly the same time each day (eg. mid-morning), then it could mean his daily schedule requires him to have an uncovered snack at a certain time.

    I know they're not great ideas, but if I can think of anything else, I'll post again. Hang in there. You have a pump, Dexcom, and your years of experience with this disease. Three excellent tools to help you get through this.
     
  4. nebby3

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    First, a deep breath. You are going to get through this. You are getting through this. Lows are going to happen (highs too). The toddler years are tough but things will even out. My dd was also 19 months old at diagnosis. She is almost 14 now. It's wonderful he's on the omnipod. I am a huge fan of the pump in the toddler years (though my dd refuses to wear one now).

    I am not sure one needs to conclude that he is making his own insulin or that anything very unusual is going on. Toddlers are very unpredictable creatures, booth in their own levels of activity and habits and in their biology. There are lots of growth hormones and the like in toddlerhood which make it a very unpredictable period. And you never quite know what is going on in them or how they feel. My dd used to always go low while playing with play-doh. It looks very sedentary but for her she was really concentrating and she'd bottom out. Only she'd never look or act low because she was so focused on what she was doing.

    Has your son had any symptoms with his lows? On one hand it's nice if there is some clue they are going low but on the other, if he is 35 and not feeling it and carbs bring him up then I would take it seriously but not consider it a panic situation. The sad thing it you will get to the point where you take such lows in stride.

    It sounds to me like it was the increased basal last night which gave him the lows this morning. Going from 0.05 to 0.1 is a 100% increase and that was over quite a number of hours. I would go back to 0.05 and if he is going high, increase it for an hour or two at most and slowly work your way up.

    I would not stop all insulin when he goes low. Though he needs very little and may be tending low DKA is still a concern in anyone with type 1. Unless your endo tells you to, I would not stop all basal. Our endo once told us that even when dd has a stomach bug we shouldn't go below 30% basal. Remember too that basal changes take a few hours to have their full effect so stopping basal now will not help with the immediate low.
     
  5. KHS22

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    Basically all I was going to say has been said.

    You can use diluted insulin in the pump, we did. Like Dad in Canada said, its a bit more confusing, but you are used to it as you were using ratios with diluted insulin on shots. Push, ask why etc.

    For basals, I know some you can do a "Zero" basal rate. So some folks have to do 1 hour of basal, 1 hour zero alternating to not get too much!!

    Good luck love!
     
  6. kail

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    We started getting scary, unresponsive lows (meaning did not come up well even with fast acting carbs) about 1 year after diagnosis and soon after this my DD5 was diagnosed with celiac. Just another thought to throw in there although I am sure your endo will consider it if it seems appropriate to your situation. Hang in there. Its been hard enough for us with insulin sensitivity ratios that made it hard to give any insulin at the start but yours are much higher. Sorry its so difficult. Good luck.
     
  7. Snowflake

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    Exact same story here, with unresponsive lows leading to celiac diagnosis. It might be totally off base, but it's certainly worth discussing with your endo.

    As for daycare: communication is the key. We had our dd in multiple daycares and preschools at the time of T1 diagnosis and up until she started kindergarten this fall. The overwhelming majority of her preschool years, I felt that she was very safe and in good hands. We did a LOT of training up front, and then her teachers texted us about anything and everything. You mention that you have CGM -- is it Dexcom with Share? That could also provide peace of mind if you're able to watch your child's numbers remotely once you're back at work.

    Very best of luck!
     
  8. hopefaithlove

    hopefaithlove Approved members

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    Thanks everyone for the support and suggestions. Today's bgs were on the really high end, 444 was our highest because the plan for today was super conservative. After another call to endo and more changes, I feel like tonight and tomorrow will be better. He's currently 240s and flat and I'm good with that for now. I'll worry about tightwe control later when he's stable for a bit. Yes, we dO have dexcom g5 so are able to see his numbers while working. He's been in daycare since diagnosed and they have been wonderful with us. They text me his bg and what he ate at meal time and then I send back what to bolus him since his ratios vary so much. I think because we went 3 years without severe lows and then to have a few frequently has just really freaked me out. I was nervous even today giving him a .10 correction when he was 400 and I was stacking on a previous correction which I know isn't good. I don't lns if he's been tested for celiac or not. He has year labs for thyroid and growth hormone because he's tiny. Almost 5 years old, 36lbs and 38.5 inches. Our 3 year old is bigger. So lots of good info
    Thanks everyone!
     
  9. DiabetesMama

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    I am so sorry that you are going through such a trying time! I don't have any suggestions except maybe using a temp basal along with a small amount of insulin. With all that activity and running around, I don't know how the little ones ever stay stable. I wish you better days and sending you and your little one hugs. Take care and let us all know how things are going.
     
  10. hawkeyegirl

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    Part of the issue here is that I don't think you can do a 0 basal rate on the Omnipod, and its lowest basal rate is 0.5. Have you thought about switching to one of the pumps that has smaller basal/bolus increments? It sounds like you could really use that.
     
  11. jenm999

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    .05! Still, not 0.
     
  12. mmgirls

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    check out one of my old threads when my second daughter was DX, it talks about the limitations of different pumps for honeymooning/insulin sensative kiddos. http://forums.childrenwithdiabetes....bitty-litttle-ones&highlight=highest+settings


    But in response to your thread, I would try for basal insulin during the waking hours up until 1 hour going to sleep, then temp basal off and bolus a correction if needed in the night. my youngest at first only needed a meal time bolus for breakfast and not a snack that happened within 3 hours of the last meal. so often snacks we did not bolus for, but if a snack landed say 4 or 5 hours after breakfast then her pancrease was again too slow to respond.

    I understand and saw the unresponsive to carb lows but not at the glucagon level. i think maybe you need to follow a bit different way of treating lows and get to them faster but with less carbs. It is hard to explain but sometimes I felt like I was fighting against not the bloused insulin but the pancreatic insulin her own body decided to go ahead and switch on.
     

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