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Daughter just dx'd T1 and have a few questions.

Discussion in 'Parents of Children with Type 1' started by MegaPug, Mar 2, 2011.

  1. MegaPug

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    Eventually, I'll properly introduce myself, but with our first Endo appt this Friday, I want to be somewhat prepared. I know that some of these he'll be able to cover, but I'm really looking for opinions from experienced parents. I have MS and have learned that patients sharing information helps stay one step ahead of the specialists. ;)

    Btw, my daughter is ten years old and was admitted to ICU a week ago tomorrow. Many of her classic diabetic symptoms were masked by her infection of Mono. She came home on Saturday in spite of predictions she'd be in the hospital several more days. I guess dh and I were quick to pick up on how to care for her. With that said, these are my initial questions:

    1. I've been researching iPumps and am VERY interested in something like this for my daughter. In the hospital, we were told that they don't tend to offer that option immediately after diagnosis. One person said it may be because of the learning curve involved, and I figure there's already a huge learning curve with the whole treatment issue. Maybe we would need to have a longer history/understanding of our daughter's trends? Anyone with some insight into this or a completely different perspective?

    2. Her current school does not have a nurse (it's a charter), and this makes me more than a little nervous, especially since we're still learning this ourselves. I feel fairly confident that I (and perhaps our D Educator) could get her teacher up to speed, but I'm still left with some important concerns. And along those lines, do you think that a pump would simplify this issue for her teacher or administration (along with appropriate instruction, of course), or would it just add one more layer of complexity?

    Meg is already taking her own BG and is learning to count carbs, but she hasn't gotten into giving herself shots yet. Next school year, we'll be changing back to her old school that has a nurse. If it weren't so late in the year, I'd consider transferring her now, but too many changes at once may only serve to stress her out more (plus, her two older siblings are at the current school too).

    Thanks for any advice or suggestions you may have. I really appreciate it.
     
  2. Sarah Maddie's Mom

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    There are 3 main brands of insulin pumps on the market in the US, two tubed and one tubeless.

    Pumping works for us. And generally speaking I think for most kids, it provided easier "normalcy" and greater spontaneity overall. That said, it's mho that doing injections for a short while, perhaps a few months, can teach you a lot about insulin duration, stacking and peaks. Not everyone is going to agree with that, though. Most endos, but not all, have patients wait at least that long before prescribing a pump. Your's may be able to be convinced that it's in your dd's best interest to start sooner, you can certainly push for it.

    On your second point, I think that pumps are far easier for "others" to deal with than are injections. At 10, your daughter could probably do all her own bolusing with an adult looking over just to check the delivery amount.

    Good luck at the endo. And welcome, sorry you've had to join us.
     
  3. skimom

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    Welcome to the club - sorry you had to join but things will get easier with time. Just remember to be patient and not to expect perfection as diabetes just doesn't allow that to happen.
    As far as pumps - some doctors will go directly to pump, others want you to wait a bit. THe reasons include the learning curve, the fact that you DO have to know how to manage via injections in the event of a pump failure or in order to deal with ketones etc and also to make sure that everyone is ready. While having a pump is great on many levels, it is not a cure all - it does not make diabetes easier but it can make things more convenient especially if your child is in school as you are more likely to get an adult to push buttons than to give an injection.
    It is great that your daughter is already taking on some of her care. She will slowly take on more and more of the care as she moves forward. My son did his injections right away( he was 14) whereas my 11 year old daughter took about 3 weeks before she would self inject with a pen.
    We don't have nurses here and if a child needs to get an injection, there are all sorts of hoops to jump through and as a rule, schools do NOT do them so as a result , many kids with D have their parents or similarly trained person come and give the shots or they assume a plan of treatment where no lunch injection is needed. THe other option is a pump which again has to be operated by non school personnel.

    In my opinion having been through this dance twice already, I would recommend that you give your daughter time to get used to her new situation, have her learn how to give shots etc and then IF she wants to explore a pump, look at it 6 months or so down the road. It will give all of you a chance to catch your breath and feel more comfortable with your new "normal". Don't rush things- you have a lifetime to deal with this.
    Good luck
     
  4. obtainedmist

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    We also wanted to get on the pump as soon as possible. After doing the injections for 3 months, we were able to start pumping, but it was a bit of a battle with our insurance company. It seems that there is a Medicare rule that requires patients to have 6 months under their belts with injections (MDI) before they will authorize a pump. Though we aren't Medicare, BCBS in our area follows those guidelines. We appealed with the help of our endo's office with a letter of medical necessity and BCBS accepted! Until that happened, for around 3 weeks, we were actually using a loaner pump thanks to the wonderful Animas rep in our area who was contacted by our endos office to see if he could help us out until we got approved. He gave us some infusion sets and cartridges as well. We went through the training classes and were all ready using the pump when the health insurance accepted the appeal. In short, you can make it happen sooner if you are willing to fight for it (if it's really something you want, that is!)

    We never would have appreciated using the pump if we hadn't done the MDI for the first three months, though.
     
  5. Corinne Masur

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    1. We had to wait 6 months to get a pump and I actually think it was for the best that we did. We learned a lot in those 6 months about the meaning of the insulin to carb ratio, bolusing, etc. Also, the night time lantus allowed for more stability and fewer night time checks. On the pump we check multiple times a night even with a CGM.

    2. Without a nurse at school perhaps someone else can be your daughter's diabetes point person. At my son's school the nurse is only part time but there is a secretary whose husband has diabetes and who feels comfortable giving injections if need be. She was already somewhat knowledgeable and was willing to come to the on site training that we did with the teachers and other school personnel after our son's diagnosis.
     
  6. SarahKelly

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    our situation is a bit different as my son was only 19 months at dx and needed the tiniest amounts of insulin, our endo doesn't do diluted insulin so the pump was really our best option for correctly administering him the small amounts of insulin. At least that is how we/our endo felt. So, we started about 5 wks after dx on the pump, we started the paperwork at the first endo appt after dx, waited for the pump to arrive, scheduled training classes and all of that took about 5wks. It wasn't too difficult for us to transition, but we're again in a different boat due to DH having d also so we already knew a bit about it, totally different ballgame in a child, but we knew quite a bit.
    As for schooling that isn't something I can reflect upon, but I do know that my parents, my mother-in-law and my sister are all comfortable using the pump with Isaac and the only one who got formally trained with DH and I was my sister...so the rest have picked it up through countless repetitive usage with us around at first and then they just did it on their own. Oddly, Isaac will even walk them through it so I guess if a 3 year old can tell his grandparent how to bolus him (although they always call me to double check) than it shouldn't be too hard for an adult. Hope that doesn't sound condescending, it's just what we've experienced.
    I am sorry you're having to learn all of this and go through it. It's a tough place to be, but sounds like you guys are gearing up well to face it head on with gusto together. Know that CWD is always here for you and you're never alone ;)
     
  7. dejahthoris

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    As far as the school- a Charter school is still a pubic school and accepts Federal funding so you have a legal right to a 504. Your endo can get that over to the school ASAP and I would also get an emergency plan in place esp with no nurse. ie what protocol will be followed in case of lows or highs. For example- she can check her bg is she feels low and self administer candy or whatever, if she cannot do this herself someone to give her gel, if she is unconscious someone to give glucagon and call 911 and you, etc. Your endo can help with that as well. They have the necessary forms on file. Even a Charter school usually has SOMEONE to handle sick children who is trained (somewhat) in their clinic.

    As far as the pump, I think it is important to learn how to administer shots initially, as was said in earlier posts, just in case of pump malfunction and other factors. Also, give your child a say in this matter as well. Some people LOVE the pump, but others prefer MDI and do fine on it. It's whatever works for the individual, and their lifestyle and medical needs. Keep in mind she will be honeymooning for awhile too. She may need almost no insulin for awhile. My son is on Lantus (long acting 24 hour insulin) and then humalog to cover carbs (also called a bolus) and during the first 6 months or so his carb ratio (the amount of blous needed to "cover" carbs) fluctuated a GREAT DEAL. It is something you have to be on top of for a while. For awhile he could almost go on Lantus alone, with only a very small bolus of maybe 1/2 to 1 unit once or twice a day to keep his bg level within range. Then his carb ratio gradually decreased from about 1:75 to 1:15 (1 unit of humalog, or short acting insulin to every 15 carbs eaten) I consulted with the endo office whenever I had any questions. I was never afraid to call them, even in the middle of the night if I had concerns. The team of diabetic educators they have really helped me more than anyone, however. It can be challenging at first. Honeymoon periods really vary from person to person as well as far as intensity and length, but luckily it seems the amount of insulin the pancreas puts out decreases slowly, which makes it a bit easier:)

    Sounds like you are on top of it and you will do fine.
     
  8. Tigerlilly's mom

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    Hello and Welcome to the club nobody wants to join.

    You will find a wealth of information and opinions on these forums. Just remember that what works for one family may not work for another. YDMV (your diabetes may vary)

    I think that there is a learning curve and as OP have stated that learning and understanding the way insulin works is REALLY important to learn before pumping.

    What type of insulin is your daughter on? Does she need to receive a shot during the school day? Many do not like the Insulin Pens, while many others LOVE them, I found that they are much easier for a child to give themselves than using a syringe, you may want to ask about those at your appointment.

    Good luck with your endo today.
     
  9. Lisa P.

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    We like the pump but I'm glad we did MDI first. I like having options that I have a good comprehension of, so knowing two different ways to keep my kid healthy is nice for me. I don't think you have to wait years, but a few months isn't such a bad thing.

    A pump would make things easier for the teacher, but only once you understood it well. If you have a hefty spring break coming up that would be a good time to get up to speed but if you have the option I'd plan to be at the school quite a bit the first few weeks either way.

    Not sure from your post, but if you are planning to move her simply because the school has no nurse I'd wait on that decision, too. You'll see here that lots of folks do well in a school with no official nurse, and lots of folks have trouble in schools with nurses. If yours is a good school, you may find you'll be comfortable staying.

    Has the school told you yet who will be in charge of her diabetes care? It may not be the teacher. After diagnosis, we found that people with knowledge (sometimes first hand) of type 1 diabetes came out of the woodwork. :p You may find there are folks there who know more than you think they know.

    Best to you, hope you find a good fit and your daughter is feeling well now. One benefit of diagnosis is that your baby can start to feel better and better as she gets insulin working in her body. :) That's nice for the whole family.
     
  10. Lisa P.

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    Massively funny location, by the way.
     
  11. MegaPug

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    Thanks everyone for your most candid opinions and the warm welcome. :cwds: I have thought a lot about the value of learning the whole regime and how the insulin responds, i.e. giving it a few months before attempting the pump.

    To answer a few questions, we are on NovoLog and Lantus. She is currently on a ratio of 1:15 for meal boluses and we seem to be doing okay, but there's always that unexplained upward swing, something we know is normal for every family, at least until we detect the pattern. She's waking up with lows, so I'm suspecting the doc will tweak her Lantus a bit. I've been keeping a detailed log, btw.

    As for who would be in charge of her care while at the school, that's the scary part. One of the reasons we have decided to move our children (before the D dx) is because the Administration and School Board don't know their ears from their toes, and approaching them in the most diplomatic way (I tend to be overly nice) has been met with much venom. I'm corresponding now through the counselor and her teacher, and neither are sure they can "accommodate" her care. I've reminded them that they have a legal obligation to do so, but they admit that nobody is equipped medically in this regard. I've assured them that I would have a team come in to help, not to mention that I would be there as long as it takes, but haven't heard back from them.

    I have no doubt Meg will be doing her own shots soon since she used to give me my shots for the MS therapy I was on for a couple of years (on something different now). We called her Nurse Ratchet because she enjoyed it a little too much! LOL! She wasn't keen on her own shots at first, but now she seems to view them as a lame inconvenience. :rolleyes:

    We've discussed the pump (pros and cons) with her to see what she thought. I explained it wasn't a cure, but a tool, one that may feel just as discouraging as all the shots. She understands this concept as she is intimately acquainted with my own journey to find the right tools and therapies that help me manage my MS. Her own teacher has mentioned that she believes this explains the maturity she displays in class, at the same time, she's a happy kid. Anyway, after talking about all that's involved with a pump, she exclaimed, "Pump me up, Baby!" ROFL

    One last thing that may or may not also factor into this is my MS. I have some very good days, but just like diabetes, I certainly have my bad ones. I'm not physically disabled, but sometimes I will wake up with bone crushing fatigue, the kind that makes me feel like I'm wearing a suit of armor. Other days, I may have a fine motor tremor, which could make drawing up insulin into those tiny fragile syringes a challenge. (My MS shots came prefilled) You should see me try applying mascara during these times... quite amusing!:p Compound that with the fact dh has to go out of town on business for a month in May. :eek:

    So all this information together has me thinking the pump may be the solution to our more complicated life. I've even considered just using it during the day and disconnecting and using Lantus at night. I will also admit that I love the idea of using one (Medtronics?) that sincs up with the GM and allows you to store 90 days worth of data. DH is in IT and we're all kind of geeky when it comes to gadgets. LOL

    I apologize for this being so long. At least now you know a little more about why I'm leaning toward the pump, but still see the value in giving shots, monitoring, and manually logging (trial by fire).

    Thanks again, everyone. I'm sure things will become clearer at our appt tomorrow, but more of your thoughts would be greatly appreciated. :)
     
  12. dianas

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    I would suggest asking your endo for samples of insulin pens to try and see whether it would make the shots easier in general or on the days you are having tremors. It may be one of those things where it's six of one and half a dozen of another. The syringes may be easier to hold and give the actual shot with while harder to draw up. With the pens you just dial the dose but it may be more awkward to hold and give the shot and sometimes they take a bit of pressure to deliver the dose (compared to a syringe).

    Good luck with your quest for a pump. I can't remember if it's already been mentioned but your insurance may have a requirement of waiting 6 months after diagnosis before they'll approve a pump. Some people have been able to appeal this but it may take time.
     
  13. Sarah Maddie's Mom

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    Well, I commend you for getting up to speed so quickly. And two thoughts.

    The 504 accommodations are pretty cut and dried. Your child goes to public school and as such, the school is obligated to provide "accommodations" to ensure that she has equal access to the educational services provided. It's not optional and it's not an act of kindness, it's federal law. Tons of info can be found here and from the ADA.

    On pumping. It sounds like a pump would be a good fit for your needs and yes, the MiniMed is the only one currently on the market that is integrated with CGM (one less thing to schlep around). Some folks here do pump "untethered", though the usual protocol, as I understand it, it to give all basal ( background) insulin via syringe and then reconnect to bolus. It's never been all that attractive an option for us because my DD dislikes the large volume injections above all else and her pubescent basal rate is very high. That said, I'm not sure if disconnection overnight is a workable plan. I would definitely bring that up with the endo.

    Oh, and last point. Your daughter's I:C ratio and her basal needs will probably decrease as she enters the honeymoon phase and you may see that 1:15 change rather quickly.

    Good luck!
     
  14. *Shannon

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    I am so sorry to hear about your daughter's diagnosis. You're still very early in it, I'm glad you've found this site. It really is a great fountain of information.

    My daughter attends a charter school, we do not have a nurse. We do have a 504 in place and a trained clinic aide who is Janie's main go-to person. Both office workers are also trained... they know how to do injections with needles and pens, how to administer insulin through Janie's pump and how to administer Glucagon. All three follow a very detailed health plan, just about any scenario is covered. It's nice to have a nurse, but often time well trained staff can fill their shoes very well.

    Are you changing schools because of the diagnosis, or was that already a plan for your family? If it's just because of the diabetes I would give the school/staff a chance to prove themselves.

    Good luck with everything!

    P.S. Just read you post about why you're changing schools, I'm sorry the staff hasn't stepped up like they should, it sounds like on several levels. They have to accommodate her. Our school is part of a county system. The county has several area nurses, they train the clinic aides and support staff. They have to. But, if your school isn't approaching this with the right attitude, it could be quite a battle, which is a shame. We've been lucky, absolutely no problems. If the other school offers everything else you want in education and a more reliable medical support situation for your daughter then, a move might be the right thing for your family. But, if you love the charter school for most things, it might be worth the battle. Then again, there may ultimately be no battle. The administration may just need to get their rears kicked into gear and things may start falling into place. I'm sorry it's all so insane.
     
    Last edited: Mar 3, 2011
  15. Christopher

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    I just wanted to say welcome and two comments. Firstly, I would not let them get away with saying they are not "equipped medically" to take care of your daughter. I was not equipped when my daughter was dx. Most people aren't. But they learn and the staff at the school can learn too. And as Sarah correctly pointed out, it is their legal obligation to do it, so don't let them off the hook.

    Secondly here, is a link to a guide that I have found very useful in helping educate the school personnel.

    http://ndep.nih.gov/media/Youth_NDEPSchoolGuide.pdf

    I made two copies of it, put them in 3 ring binders and gave one to the school nurse and the other to the school Principal, during the initial meeting where everyone got together to discuss how the school was going to meet her needs.

    Good luck
     
  16. MichS

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    Just wanted to give my welcome. You sound like you have done a ton of research and know a lot already for a newcomer :eek: I'm impressed! And, very thankful that your daughter has such a capable and caring caregiver. :)

    Good luck at your endo appointment. I can't really give you advice on the pump, and frankly, I'm reluctant to do so because so many endos have such strong opinions one way or the other I'd hate to get your hopes up. I think it is great to be informed though. I see the advantage to MDI for a few months first. But I also see the advantage to pumping right away. Its a tough call.

    As for the school...I am in Canada and we don't have school nurses. We have to depend on the school division to provide the resources needed. I've been very fortunate in that our principal and teachers have done everything possible to help us along. I usually find the "sweetness" factor to help as well. I'm sorry it hasn't worked for you thus far. Time to pull out the mama bear protectiveness! Watch out!

    Good luck!
     
  17. denise3099

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    There is a lot to learn and you'll get to it all eventually. You're doing great so far. :) Just some quick tips/hints for you. There are many tools to make things easeir for non or pre pumper. Insulin pens are awesome. You screw on the pen cap with the needles, dial up the dose, press the button and dispose ot the cap when done. (There are some other steps but those are the basics) Way easier for kids and adults with sometimes limited dexterity.

    Also, there are tools that help you fill a syringe and administer. The diabetes forecast mag from jan was great:
    http://forecast.diabetes.org/january-2011
    This is about cool tools:
    http://forecast.diabetes.org/files/images/v64n1_p56-57_Aids_For_Visual.pdf

    Also, and I haven't used these personally b/c we starting pumping but they look great. http://www.i-port.com/ It's like a pump infusion set without the pump. There's another brand too. http://insuflon.com/insuflon.html

    Basically, there are other options besides the pump that you can start on while you wait. the first thing you need though is a really cute bag to put all her D things in. :D http://www.fifty50pharmacy.com/Merc...t_Code=SK50SMCASE&Category_Code=CarryingCases
    http://www.yakpak.com/common/pagedetail.aspx?PageCode=handbags
     
  18. PatriciaMidwest

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  19. JacksonsMom

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    I don't want to overwhelm you or try to persuad you to pump or not to pump. I too in the beginning wanted to do it right away. I threw myself into learning everything I could about this disease and I was convinced that we had to have a pump right then but our Dr. said no, you need to wait 6 months. 6 months turned into 2 1/2 years. I personally didn't feel that MDI was that bad, we had great A1C numbers. Pumpind definately has it's advantages but I am not one to push it. Like pervious posters stated, take your time in making that decision.

    My son first went to a private preschool. I trained all of the staff myself. We put a medical plan into place. They learned how to draw up insulin in syringes and how to treat lows and give glucagon. I packed his lunch everyday and included a carb count. They would check is BG, carb count what he ate and call me. I would tell them how much insulin to give and they would adminster it. I had a lot of apprehension in the beginning, a lot of what if's. But, I can tell you that it all fell into place.

    Flash forward, my son started Kindergarten this past fall. He started pumping this summer. This school has a nurse who is wonderful.

    I can honestly say that it didn't matter MDI or pump. We have had good experiences with both. What does matter is you, your daughter and family adjusting to this disease. Providing good training for the individual responsible for her care and establishing good communication with that person.

    There is so much to learn. You start with the basics, then you learn how, why and when to make adjustments as you learn your daughters Diabetes. As time goes on you learn more specifics about all of it, it is a building process. The wonderful people here on this board are there to help you every step of the way. Good luck!

    (At this moment I could sit and right a book about all of the things you go through and learn when you are dealing with a newly diagnosed child! But, I'll refrain. Please PM me if you have any questions! Also, utilize the search feature on the forum, you can do a lot of research there on ANYTHING!)
     
  20. bibrahim

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    Most offices require you to complete basic diabetes education and take a pump class. I wish I would have pushed for a pump sooner. We got ours at 8 months after dx. Many people discouraged it, said it was harder, etc. If you are already properly managing the D on shots, it isn't harder, just different. I much prefer it to shots. My main reasons are less lows, easier to eat according to hunger, more privacy, able to adjust basals according to what's going on in life, one poke every 3 days vs 4+ per day.

    Drawbacks- bad sites on occasion, people think the pump does everything.

    Also, why not try for a CGM too? You might need to see if she has lows in the night or unrecognized LBS for them to approve it. And because we had met our stop loss for the year insurance wise (from hospitalization at DX), we didn't have to pay anything for her pump and CGM. If we had waited any longer we would have had to pay 20%. Cost was a huge factor as I was underemployed at her DX.
     

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