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New Here...Could use advice

Discussion in 'Parents of Children with Type 1' started by sab20619, Jan 4, 2013.

  1. sab20619

    sab20619 Approved members

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    Hi there...My daughter Claire (11yo) is currently undergoing chemo treatment for Leukemia (until Jan 2014), and was initially a steroid-induced diabetic...until August 2012, when her drs found she tested positive (30) for the GAD65 antibody. They now believe she's full-blown Type 1 (latest A1C was 7.2). She in insulin dependent during steroid pulses, as well as the rest of the month. This is still very new for us, and things have gotten scary quite a few times...during times of "chemo holds" when her white blood cell count is low, she becomes very sensitive to insulin, and she's come close to bottoming out three times in the past couple weeks. There's also been other months when she goes over 600 with mod-hi levels of ketones. We're trying hard to figure everything out, but could use input on a few things:

    1. Best insulin calculator apps for iphone? (Her dr. is revising her regimin from a sliding scale to the bolus calculation)

    2. Anyone use a cable to upload blood sugars directly to your computer? If so, does the corresponding computer program have the option to enter insulin doses (so as to cut down on amt of info I have to hard input).

    3. Any advice you want to throw at me as a newbie, I'd appreciate. The cancer has been our urgent "fire" as she is a high risk patient, and we've been muddling thru the diabetes stuff. But I know see that it has to be an equal priority.

    Anyway, thanks in advance :)
     
  2. hawkeyegirl

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    Hi! I'm sorry for all of the health issues Claire is undergoing right now. What a hard time this must be for your family. :(

    I don't have any information about dosing apps, but hopefully someone who sees this thread will have that for you. With respect to uploading meters directly to the computer, it would not surprise me if some software allows you to enter insulin amounts too. If no one here can help you with that, I'd call the customer service number for your preferred meter and simply ask. For what it's worth, we have used an Accu-Chek meter from day one, and find them to be extremely accurate, easy to use, and the customer service is outstanding. Back when we logged numbers, I preferred to do it with pen and paper, but I am also the person who keeps a paper calendar too, so take that for what it's worth. ;)

    As far as advice, my approach when my son was first diagnosed was to read everything I could get my hands on about T1 diabetes. I strongly recommend Think Like a Pancreas, by Gary Scheiner. Type 1 Diabetes by Ragnar Hanas is also a wonderful resource, as is Using Insulin by Walsh. But I'd start with Gary's book. It is written in a very accessible style, and will give you a solid foundation.

    My other advice to you is to get some help! If you are married, get your spouse involved in learning to care for your daughter. If you have friends or family who are willing to learn, take them up on it! You will need breaks and need to take care of yourself. "Just" a diagnosis of T1 is so hard, and you have cancer to deal with on top of that. Do not be afraid to lean on others.

    Oh, we have had at least one poster here whose child was diagnosed either during cancer treatment or shortly thereafter. I believe her screenname is Reese'sMom or something similar. She doesn't post much anymore, but I believe she still checks in occasionally, and she is super nice and smart and may be able to give you some perspective that the rest of us can't. I will send her a PM and hopefully she will see it and chime in.

    Best wishes to your family, and I hope to see you around here in the future! :)

    Karla
     
  3. Jensmami

    Jensmami Approved members

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    Hi there! I am so sorry Claire has to go through so much right now! This must be so overwhelming for you :( Karla, gave you some great advice and book tips.

    Maybe you could discuss a glucose monitor Dex G4 with her endo. I know the type 1 diagnoses is very new to you, however there are people who leave the hospital after diagnoses with them. And because Claire has also chemo treatments I think the Dex G4 could be a great help to monitor her bg.

    Jenny, my daughter is now since 3 weeks on the Dex and I LOVE it! It gives very accurate readings and warnings if she drops low or high!
     
  4. JamieP

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    Hi there. I'm so sorry for all your going through. I can't even imagine how hard this must be, but it sounds like Claire is in good hands.

    I second the info above. Read and learn as much as you can about this disease. Those are the best books. I also learned a lot just reading through this forum in the beginning. The Dexcom G4 is also a great idea. My 13yr old son was diagnosed in April and we got the G4 as soon as it came out on 11/1. It has been truly life changing for us. It has given me such peace of mind and so much more sleep. It is our first CGM and I wouldn't have jumped right into one so quickly had this one not been released. It is so much more accurate that prior generations. It is smaller, has a much better range, and hurts very little upon insertion. My son says he doesn't even feel it on him. It's also quite easy to learn how to use. Your Endo might not be familiar with it since it just came out and he might suggest that it's too difficult to jump into a CGM so soon- not the case.

    I would think that you will continue to see similar patterns in Claire's blood sugar. It would make sense that her insulin needs would drop when her immune system is suppressed. At this time, it probably isn't destroying as many Beta cells and her pancreas is probably able to produce more of its own insulin. You can probably plan on decreasing her insulin during these periods.

    Another tip is test frequently. More frequent testing = better control. The Dexcom will help a lot with that, but in the meantime, more finger pricks are worth it.

    I recently saw a blog that talked about a couple IPhone apps like your asking about. Ill see if I can find it and post a link here.

    Please feel free to ask lots of questions! There is also a great Facebook group run by the DRI (Diabetes Research Institute) called the PEP Squad (PEP for Parents Empowering Parents). It's a wonderful support group to check out.
     
  5. JamieP

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  6. StillMamamia

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    Hi. No real advice, just wanted to say I'm sorry for all you guys are dealing with.:(

    If your daughter is on the pump, then the upload of info should contain blood sugar levels and insulin given, depending on which type of meter you have. Ask your endo if possible to get a pump with a linked meter. Then you can just upload the info to the pc.
     
  7. Megnyc

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    Hello there,

    I am insulin dependent as a result of a pancreatectomy due to treatment for burkitt's lymphoma. Anyway, I am so sorry for what you are going through and I totally understand how tough it is to find a balance between treating the cancer and managing the diabetes.

    I have several thoughts though:
    1. Dexcom G4. I am assuming your daughter already has a port so this site would be nothing compared to that. This is a sensor that checks blood sugar every 5 minutes and sends it to a device that alarms if she is high or low. If/when she starts radiation this would be very helpful because that causes extensive blood sugar swings as well. You are probably adjusting basal rates constantly (that is the lantus/levemir) and this would make life SO much simpler.

    2. Blood ketone meter. I remember constantly being woken up to pee in that pink cup to check for ketones. The two brands in the US are Precision Xtra and Novamax Plus. If you give novamax a call they will send you a free meter with sample strips. It is the same as a blood glucose meter just a little extra blood.

    3. Are they using those disposable lancets in the hospital? If so you can buy your own (I suggest the multiclix or fastclix) and it will hurt her fingers much less. If you call accu-chek they should send you one for free or just request an accu-chek nano or aviva and it will come with it.

    4. Consider pumping. I went straight from IV insulin to a pump. The issue with doing shots is it takes basically 24 hours to adjust basal rates. You are going to need to be adjusting basals hourly during prednisone tapers. I know it is one more machine to attach your daughter to but if she/you are comfortable with it, it could make life easier. If you are dealing with sensitive skin due to chemo/radiation I would personally suggest a tubed pump just because the site is much smaller. I am more then happy to walk you through how to tape it to keep from pulling skin off or send you the contact info for a medtronic rep who has dealt with this before (she would help even if you go with a diff. pump company).

    Again, I am sorry you are going through all this. Chemo sucks enough as it is without dealing with diabetes as well. Let me know if you are being treated at St. Jude's and I can put you in touch with some folks to get you started with pumping if you are interested in that. St. Jude's should cover the pump if your insurance won't. Feel free to send me a PM. My family is traveling right now but I am sure I could put you in touch with my parents as well.

    Good Luck! Do let me know if there is anything I can do.
     
  8. Lee

    Lee Approved members

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    I am so sorry your family is experiencing this! I wanted to add talk to your Endo about how you can make your daughter more comfortable - such as pumping, using the Continuous Glucose Monitor, using a better lancet such as the Multiclix, and also talk to them about how steroids make blood sugar and insulin needs increase dramatically.
     
  9. sab20619

    sab20619 Approved members

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    Huge Thanks

    OMG thank you all very much for all the great info! It is such a great start and I am going to look into everything. I have never heard of the Dexcom G4, but will emailing Claire's Endo about it right away...continuous monitoring would give us all peace of mind...her fingers are really in bad shape from all the checks (we've been using the multiplex lancets, which seem to be gentle, but checking as often as she has is still hard on little fingers).

    As for a pump, they said we have to first wait until chemo is done to make absolute sure her BG doesn't return to normal (apparently there's still a small chance). And second we have to become alot more familiar w/ the bolus regimin and doing the formula calculation, counting carbs, etc (which we'll be starting on Tues).

    Claire is not treated at St. Judes (but thanks for the offer Megnyc to put us in touch w/ folks there)...we are in the DC Area and for Endo we use Georgetown. For Oncology we use Childrens.

    Again, thanks much for all the great recommendations. I will be checking into everything!!
     
  10. Lisa - Aidan's mom

    Lisa - Aidan's mom Approved members

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    I'm so very sorry your daughter has been thru so much. I hope you can move forward and get her the Dexcom ASAP.

    Wishing you strength.
     

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