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What do you wish you had at dx?

Discussion in 'Parents of Children with Type 1' started by Mama2H, Mar 6, 2009.

  1. Mama2H

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    I have been seeing more and more newbies and thought it would be nice if us "old timers" put out some things that are now our "must have" D tools. For us it is:

    Salter scale! Both home and travel version.

    Air heads, Hailey never gets sick of them and they work really fast.

    CGMS! IMHO parents should have the option to leave the hospital with the pump and cgms :eek:

    Inject eze when we were on shots. Hailey fought so bad until we got that.

    Glucophone, it was awesome until Hailey felt she needed a cooler looking phone. I hope someday glucophone upgrade so you can use the more "hip" phones. For now we are back to texting.

    Another D family! I wish the hospital had someone on staff but since most don't I wish they would tell parents to call JDRF and have you ask for a family to meet.

    The smaller Apple & Eve juice boxes, the ones with sesame street on them. You can buy them at sam's club and they have less juice. 15 carbs was always way too much to treat a low with Hailey.

    Spibelt for a pump pack! Perfect for sleeping and sports.

    Radio shack system for the cgms! Why is MM taking so long getting a parent moniter???? I am so glad I found the radio shack system though, I can confidently sleep through the night knowing I will hear all alarms.

    I am sure I will think of more but this is my "starter" list :D

    So what about you guys! What are in your D "survival" kits?

    ETA: You can buy a big box of airheads at Sam's club much cheaper than at Walmart.
     
    Last edited: Mar 6, 2009
  2. StillMamamia

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    - A 24/7/365 cellphone and fax number where the endo or someone from the team can be reached.

    We have had this since Ian left the hospital. We called the endos (we have 2, but mostly see one, they rotate with the 234/7/365 cellphone) at the weirdest hours. Last time Ian had ketones, I called one of them at 4am! No complaints, just answering my questions.


    - a list of local support groups

    - a list of local counselors/psychologists specialized in Type 1 diabetes

    - a toy buddy for the kids with a injection or pump kit

    - glucagon training classes

    - a list of recommended books on Type 1
     
  3. Sarah Maddie's Mom

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    My list would include:

    Ragnar Hanas' Type 1 Diabetes

    A copy of Calorie King

    Inject-ease

    An invitation to a Parents Support group

    24 hour phone access to an Endo

    The name and number of a local parent with a close in age child

    and above all a

    Link to CWD

    I think if I had been given a pump or cgms at the hospital I would have really been overwhelmed :cwds: The first few months are so intense that I'd suggest baby steps and lots and lots of support!
     
  4. hawkeyegirl

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    I wish we would have had some continuing training. We were given a vial of NPH, a vial of Humalog, instructions to call daily with numbers and sent on our way. If I wouldn't have ordered every book that Amazon has on T1 and found this website, we wouldn't be much farther along than we were when we left the hospital.

    Parents should be taught how to adjust their child's doses. They should take classes that teach them how the insulin works, and should learn about IOB, DIA, how and when to adjust basal and bolus. Instead we got some stupid carb counting classes that mostly were geared toward type 2. I'm not a moron. I can figure out that if the package says 10 carbs per serving and my son eats two servings, that's 20 carbs. I don't need a 3 hour class for that.
     
  5. Mama2H

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    I also wish someone had told me that it was ok to fire our Endo. At dx I still had the "Dr God" syndrome. Now I know that the endo works for us and if it isn't working we should shop around and find the RIGHT fit!
     
  6. candise

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    Ok- newbie here,
    What is inject ease and a glucophone?
     
  7. Mama2H

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    Glucophone is a cell phone that texts blood glucose numbers to your cell phone when your child tests with it. It is a meter and cell phone in one. http://glucophone.net

    Inject ease is a device that lets you inject without seeing the needle and makes sure you get the right depth and angle.
     
  8. Nancy in VA

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    Well, I think the diagnosis period is overwhelming and if I had been presented with some of the things mentioned here, I seriously would have jumped off a cliff

    For me, access to another parent of a child her age would have been perfect. I needed someone who understood what was going on.

    Calorie King would have been nice. We were told to give 45 carb meals but if it didn't have a package, we didn't know what to do. I had well-meaning friends who offered to bring meals that I had to turn down because I didn't know how to dose them for Emma.

    I think all of it comes in time. I was interested in the pump almost from the beginning but I think I woudl have been overwhelmed having to do that right out of the hospital. I also would have been completely overwhelmed with CGMS. And I'm a pretty techonologically savvy person and I think there is still a breaking point where you just can't take anymore. I do appreciate that my doctors tried to give me as much as they thought I could handle in order to take care of her at home, with more to come.

    For me, having someone contact me either in the hospital or within a couple of days of being home that is a parent of a diabetic would have been ideal. I think she would have calmed the fears and helped me through the first two weeks or so until I was ready to branch out on my own and find other things.
     
  9. cynth873

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  10. Mom2Boys

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    It would have been really nice to have another family to talk with at diagnosis. We didn't know any one with type 1 and it was really scary for us. Once we met with our CDE, who has type 1 too, I felt a little more at ease knowing it was something that people can really live with!

    Also finding this site was probably the best thing I could have done. I never would have learned so much so quickly if it weren't for this forum. Plus it has helped me to become a better advocate for Luke. I am more informed so I know when our endo is just making up excuses, etc instead of relly working for us.

    Maybe better glucagon training too. We left with so much information that I couldn't really process the part about glucagon. Maybe they should do refreshers every so often to make sure we know what to do and when.

    Also the whole part about giving 15 fast acting carbs followed by 15 slow carbs was way too much for my toddler. It took coming here to find out that's not a one-size fits all thing. We had lows followed by sky highs then we'd correct and go low again--it was a roller coaster until we figured he didn't need all that.
     
  11. Mama2H

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    I guess when we left the hospital I felt "undereducated" and the medical personel was treating me as if the pump and cgms were to "difficult". I think that should have been my decision. Once we were finally able to pump and cgms our lives finally got a bit easier. Up until the pump I was in panic mode all of the time. We were able to calm down and take things a bit easier with the less strict pump regime. YDMV :eek: I am a knowledge is power sort a mom and I wanted the MOST advanced technology from day one NOT when the endo felt we were ready or when enough "time" had passed. JMHO.
     
  12. Nancy in VA

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    Nicole: May the regimen you were on was the problem, and not the lack of a pump. We did MDI with Lantus and Humalog for 6 months and weren't forced into a structure or a schedule - the pump made it easier to be more precise, but we didn't get any more flexibility than we already had.

    I think honestly that its crazy to send ANYONE home on an NPH regimen that is structured to eat at a certain time and have a certain amount of carbs. That's the one thing I wish would go away
     
  13. hawkeyegirl

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    I LOVE our pump, but I do think it would have been a bit much for me at diagnosis. My head was spinning so much I don't think I could have made that sort of decision at that point. Plus, I wouldn't appreciate it as much if we wouldn't have had to do shots for 5 months!

    Agree with you on the NPH. Why in the WORLD we were sent home on it is baffling to me. I remember crying because Jack didn't want any more food, and I knew he had to eat something or he'd go low. We were stuffing him with Cheetoes, candy, ANYTHING to get enough carbs into him. To his credit, at our two week follow-up appointment when I told our endo this, he switched us to Lantus on the spot.

    ETA: NPH is really a more ADVANCED way of doing MDI - Lantus/Humalog is much more straightforward and easier to understand. I know we have posters on here who have good luck with NPH, but the most successful ones seem to use all the insulins (including Lantus or Levimir and Regular), and not a straight NPH/Humalog regimen. That's why the tradition of starting people out on NPH baffles me.
     
    Last edited: Mar 6, 2009
  14. Mama2H

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    Nah, she was on Humalog and lantus. The shots were the problem. Try holding down a 10 year old to do her shots. At first it wasn't too hard because she had lost so much weight but after she starting gaining weight she also gained strength :eek: Our old endo also wanted her on a meal plan and that was a nightmare! I hated it and so did Hailey. They did give in and let her off of that but the shots were still a big problem. Plus I hated always figuring IOB, duration, odd numbers of carbs, etc... just to get a shot was a 15 minute ordeal and by then she didn't want to eat because her food was cold :rolleyes:

    IMHO the pump makes things so much easier for OUR family. Stick your food on the salter, it pops the carbs out, put the carbs in the pump, push a couple of buttons, and eat. Sites are only every 3 days and I can do those while she is sleeping so no more shot fights. Just a better fit for our family and imho we should have had the option to get one right away. Also the cgms has helped me relax and not worry about surprise highs or lows. Since Hailey has never felt her lows I spent the first 6 months in constant fear. It was exhausting trying to always know what was going on and having her test so much. After 6 months on the cgms our family as a whole was more relaxed and able to start enjoying life.
     
  15. CButler

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    Precision Blood Ketone meter and strips-asking alot, I guess!
    Better and longer training session before we left hospital
     
  16. Nancy in VA

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    Nicole: See, I think your shot experience is just more unusual than normal.

    We had to fight Emma a little, but it was only a couple of days. And really it was just a matter of the 20 seconds that it took one of us to hold her down and the other to stick her. I think extreme fighting for shots made your experience worse. That's also the reason that Shot-Eze just wasn't even something I considered needing.

    I think what we are hitting on is that what people need at the beginning is different. But I am firmly believing that less is more. I could not have stood any more training at the hospital than I had. I knew how to check her sugar because that's how I diagnosed her, with a finger stick. But practicing drawing up the insulin, figuring out the basic dose and injecting was probably all I Was able to absorb in my brain in the couple of days after diagnosis. Now it took us longer to get more training that I would have liked, but I'm all for getting some basic training and getting home with support because its got to be better there than at the hospital.
     
  17. betty6333

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    I was unaware of the lows he was going to have. if I could change it I would have refused to leave without a script for a cgm. I would have paid out of pocket for it, yes it might have been a lot of info, but there were so many times when i used "mommy" instinct to test and found him in the 30's that I believe the lack of a CGM contributed to his severe hypo-unawareness that he has now. We did the cgm while on MDI, and it was astounding to see how insane his BG levels were. I only regret not having the cgm followed by the pump. We needed something to tell us when he needed to test.
    even when he was on NO lantus and a 1-60 for his Novolog we caught numbers in the 40's at least 2-3 times a week. It saddens me to remember that time. I am thankful everyday that he is ok. I couldn't understand why when he had had no basal or bolus insulin for days he would still drop to the 30's and 40's . knowing what I do now though, I wish I had pushed and pushed harder much , much sooner. I just trusted the dr was doing what was best, I didn't think that she was a moron. Now I know better. :eek:
     
  18. CButler

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    Yes, everyone has a different way of coping. For me, I wanted all the information I could get. My husband wanted to be around people who had type 1 kids.
     
  19. jcanolson

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    I would have been totally overwhelmed by the pump and CGMS leaving the hospital. I still remember trying to learn everything (with no sleep) what was low, what was high, ketones, sick guidelines, carbs, injections, etc. If I could have walked out of the hospital with a pump with the perfect settings for her, maybe, but we all know it takes time to get all those settings right.

    I would have love to have had info on this site, contact with other families with similar age children, recommendations for good books, and an insulin plan that didn't involved "she has to eat this many carbs at this time of the day".
     
  20. sammysmom

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    I do think that handing pumps out at dx, along with a cgm is down right dangerous. The dr has no way of knowing if the parents can and will properly handle a pump. While pumps do offer more flexibility they are also more dangerous. DKA happens much faster and if the parents do not follow through (which we know not all do)then the child is put in danger. I think a working knowledge of insulin and how it works in our child's body is a good thing.

    I do think that simple is the way to go as long as that encompasses everything you need to know. How and why to check for ketones, how to draw up insulin, how to inject insulin and how to deal with the emotional aspects of diabetes and children.

    Too much info all at once can be overwhelming and newbies do not need to be bogged down with all the extra stuff all at once. Not everyone needs a scale, especially a teenager, not everyone wants to be thrown into technology...as with pumps. The dr. has a call to make and the most sensible course of action seems to be to ease the patient/parents into the managment.

    Yes some dr's are bad, but the majority are not. It seems like people either like their dr becuase the dr gives them everything they want or they dont like thier dr because things are not moving fast enough. The dr does have a responsibility to make sure the patient/parent is ready for the next step in diabetes managment. We all know the stories of patients that end up in DKA or worse becuase they did not have the basic knowledge of insulin pumps. The dr is responsible to not just hand out pump, he/she has a duty to make sure the training is there, which is why I believe a lot of dr's do not like to rush into new technology with newly dx.
     

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