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Child in the hospital, need some advice

Discussion in 'Parents of Children with Type 1' started by tresmom, Nov 11, 2010.

  1. MReinhardt

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    I'm so good that the Dr said exactly what I had stated. My daughter was diagnosed with gastroparesis, in 2007 with many of testings and endoscopes. So I do have much experiences in dealing with gastroparesis, keeping her A1c around 6.5, for the past several years, by using the an insulin pump, pumping with Novolog, and now Apdira.

    With that in mind, what your dr has said..IF he does find that he is being diagnosed with gastroparesis, I'll be more then happy to help you out, until then..I hesitate to add more reading about gastroparsis, and list the other tests that can/should be ran.

    It pretty much sounds like, he might be rebounding, not enough insulin, insulin resistance, or even having an allergic type reaction to insulin. Maybe a combination of all. I would not discount what the other wise people here have to say....it all sounds pretty complicated.

    Please keep us posted..and PM me if you need help on gastroparesis type issues.

    ETA: Have they checked his bowels? A person can be constipated and still have a bowel movement every day. If the large bowels are blocked then there is a change the small bowels are also, this would leave food in the stomach. If food can't leave the stomach, then there is no other place for the food to go but up (vomiting). Hopefully, they can Check the bowels, its simple..its an xray.
     
    Last edited: Nov 11, 2010
  2. Andrew's Mom

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    I will be praying that you get the help you need and get his numbers down.:cwds:
     
    Last edited: Nov 11, 2010
  3. wilf

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    Ok, I can't in any way imagine him needing this much insulin. You've said he's around 130 weight wise, which is about 60 kg.

    At 18 he's done puberty with its' higher insulin needs.

    So "normally" he should be needing about 40 to 60 insulin units a day, depending on diet and exercise. Let's assume 60. And he's actually getting at least double and perhaps at times close to triple that.

    There is a chance that his body is in what I will call "panic mode", due to excessively high insulin doses and resulting brief sharp lows. The body has the ability to hugely increase output of hormones, causing BG to be HIGH and insulin resistance to also be high.

    I am going to suggest you try something that sounds crazy, but which may help us understand better what is happening.

    I am going to assume that the amounts of insulin he's been getting are much too HIGH, and that he only needs a fraction of that amount. (I know I know, it sounds crazy ;))

    Here's what I'd like to consider trying:


    1) Talk with your son, and ask him to assist with this experiment. Explain to him what you're doing and that it can only work if he's 100% on board and helping out.


    2) Then switch to a carb-free and low fat diet for a period of at least 2 days, ideally over a weekend when he's home so you can keep an eye on him. That means any snacking he does when he's away from home is also carb free. It will be hard, but not impossible. And no worries, he won't starve in that time. Let us know if you need food tips.

    In the absence of carbs or high fat content, he should not need any bolus insulins at all. That will take boluses out of the equation entirely.


    3) Then try CUTTING the Lantus from around 30 units morning and night, to around 15 units morning and night. This is around the upper end of the amount a boy his weight and age would normally need.


    4) See to it that he's really well-hydrated (with water). Moderate exercise like going for a walk now and then is ok, but nothing full out for that test period please - you want to minimize the possible variables affecting BG.


    5) Then watch his CGM like a hawk and test often, and post your results here..


    This may sound nutty, but it may just give you some new information to go on - and there's a chance (I don't know how big) that it turns things around. Good luck. :cwds:
     
  4. Heather(CA)

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    This seems a little simple but it was my first thought as well...Are you sure the insulin is good? I would switch it out and see what happens if you haven't already..:(
     
  5. wilf

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    They have. At the dosages he's getting, they go through a vial pretty fast.

    Even tried switching types of insulins..
     
  6. chbarnes

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    My only thought reading through this is that insulin resistance is not uncommon among type1 teens. I think I read recently that about a third of type one teens show some insulin resistance. The only problem is meds like metformin tend to cause nausea, and Symilin SLOWS gastric emptying.
    BTW don't some people go low after meals due to gastroparesis? The insulin bolus would hit before the food left the stomach.
    Could there be a concurrent illness raising the blood sugars? An infection, for example. Even when Chris broke his arm we had to double his basal for a few days.
     
  7. manda81

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    I don't have any advice for you that hasn't already been offered, but just wanted to tell you I'm sorry you're dealing with this, I can't even imagine what you're going through, and what he's going through, and I hope it's taken care of and you get some answers quickly.
     
  8. Heather(CA)

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    OK I had not read all the posts :) I will go back and read. I agree with not eating carbs and starting fresh..
     
  9. 5kids4me

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    I am sorry...I can't imagine how rough this must be for your entire family, Please know that you all are in my prayers.
     
  10. Nancy in VA

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    I hope today was better and maybe you were able to make some progress with the Drs. Please update when you get a chance.
     
  11. VinceysMom

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    I cannot imagine how you and your family must be feeling, please know we are all thinking of you and send our support to you all.

    Good luck, hoping things turn around for him very soon..

    Kathy
     
  12. tresmom

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    Well for what it's worth I think you are right. This is what has distressed me the most. How much insulin he is taking. It just is way more than someone his weight should need. Now in the hospital they had him down to 26 units of Lantus a day the first trip. With no food on board his numbers seemed to stay somewhat in range. Then they sent him home back on his regular dosage. This time around they are not doing that. They are giving him 30 units AM and 26 units PM of Lantus and 15 units per meal.

    I am willing to give this experiment a try, but a little nervous about it as he is supposed to go on an insulin pump soon. I still have to reschedule the pump start date. I am also a little nervous about doing it right out of hospital discharge. How would you be able to tell ketoacidosis or just ketosis from being no carb? I'm not sure if this would be a wise experiment to try right yet of if it would be smarter to hold off until a week or so out from hospitalization. He is supposed to be going on a pump soon so not sure if this is something to try with a pump start date being soon.

    Last update is they are thinking of discharging tomorrow. His numbers have been good and he's actually had some lows there. However he said they put him back on IV and back on the heart monitor for some reason so I don't know. Will have to find out what that is about. (Juggling kids at home right now.) They have tested him for everything under the sun looking for an underlying infection. They even tested him for STDs which I can assure you they were barking up the wrong tree with that one. (Test results confirmed that was not the issue as well.)

    Thank you all for all your feedback. (You and everyone who has replied to this thread.)
     
  13. wilf

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    This is something to discuss with your medical team. I am just trying to give you some different ideas, given that the same old approaches seem to be leading back to the same old problems.

    If I were in your shoes, I would be going back to the very basics. Finding the right Lantus dose by going no carb until I had it figured out. THEN adding carbs, and giving boluses for those based on the assumption that TDD should be about double the Lantus dose.

    *****

    Regarding differentiating between ketosis (from a low carb diet) and ketoacidosis (from no insulin), this is something that is a total puzzle to me. I'm stuck trying to figure out how he could have ketoacidosis (which we've all learned really only develops in the absence of insulin) when your son is getting 120+ units a day. There is something very wrong there.

    I'd suggest giving all injections on a go-forward basis at entirely new locations, every time. Have him checked by someone qualified for lipohypertrophy (fatty lumps at frequent injection sites), and mark those with permanent marker. Avoid them at all costs, and never mind if it hurts. Moreover take a 100% systematic approach to new injections on a go-forward basis (setting up a grid for injections, and working your way through), so you're sure you're not hitting previous injection sites.

    This may seem way too much. It's not. Your son's health, in fact his life, is at risk. It is time to be considering and where appropriate making radical changes in every aspect of his D management.
     
  14. TheFormerLantusFiend

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    Your son should not be diagnosed with gastroparesis if they can't test his gastric emptying while his blood sugar is below 200.

    Gastric emptying is delayed in most diabetics while their blood sugar is high; but it's normal in about 85% if you only look at gastric emptying when they start the meal with a normal range blood sugar. For this reason I believe your son's doctors are probably correct in saying that you can't read too much into his results at this point.

    Insulin resistance can and does happen in people who are not overweight, especially if there is some other disease active, but sometimes without that. Is his thyroid okay?

    If he has really high insulin needs, I am wondering if you have considered U-500 insulin. I have read that absorption of really big doses is hard and therefore having more concentrated insulin helps it to work.
     
  15. SarahKelly

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    my only other thought is that you need to remember the YDMV rule. My husband's highest insulin needs were 18-22, his highest HbA1C was during the same time. He, and his doc, were convinced that it had to do with insulin resistance caused by hormones including ones increased during times to stress (like college, having loved ones ill, moving...etc). So, once these stresses and his life got more calm, his hormones leveled out, his insulin needs dropped drastically and voila his HbA1C improved, too.
    So...I hope the doctors find answers. And ask questions. Write them down ahead of time.
    My other thought is what about the thyroid? Recently my husband has also been having trouble with his thyroid and it's really messing with his weight (dropped a lot quickly), has caused his BG to be difficult to maintain in range, and he's had random ketones appear. He's waiting on further evaluation, but his thyroid is enlarged and we're hoping that will help things even out again.
    I just know with this disease there are many factors and sometimes we need to keep asking for better answers.
    You're in my prayers. I know how stressful it is.
    Take care :)
     
  16. tresmom

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    I have just recently heard about U500. I don't think we are there yet, but we'll see.

    Update: He was released today and actually has been having problems with lows in the hospital now. Hopefully this is the start of something good. They squeezed him in for Tuesday to reschedule his pump start date. I am crossing my fingers that we are back headed in the right direction. Between now and Tuesday we are using the pump with saline and I am checking before meals and 2 hours after. We also have Dexcom in place as well. Hopefully that will be enough to keep things somewhat balanced until Tuesday. I will try to check him overnight as well.
     
  17. kiwiliz

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    I haven't posted yet because I had nothing I could add to the very good and informed advice you have had - but I have been watching your progress with concern. You must have been really worried. Wonderful news that they are getting him on the pump. I am sure it will help. Teenagers can be so cavalier about their care. I had to sew a clear pocket in my dd's Nav case because she couldn't even be bothered fishing it out to check her numbers before eating! I am sure once he starts feeling better he will want to stay that way. It must have been rough on him. Let us know how you get on.
     
  18. wilf

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    Great that he's back home. Don't be afraid to dramatically reduce his insulin dosages if lows are happening.. :cwds:
     
  19. mmc51264

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    I have been thinking about you and your family all day. It has really touched me and I am praying that all turns out as well as it can. Don't have any advice, just support of someone who is thinking about you, praying for you and your family.
     
  20. Heather(CA)

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    OK, so I just learned that you CAN get ketones from rebounds so now I REALLY think this is what's happening with your son. I would start lowering his insulin...
     

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