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Any new parents of Toddlers diagnosed recently?

Discussion in 'Parents of Children with Type 1' started by Shayekab, Feb 6, 2015.

  1. Shayekab

    Shayekab New Member

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    Hello. I am new to this site and all of Diabetes in general. We are a week into our diagnosis and boy is this a ride.

    Our brief situation - My daughter is 2.5 years old (barely) and was drinking a crazy amount, tired, clingy, and excessive urination for the last 2 weeks. Last Friday, January 30th, we decided to take her to her PCP and check her out. Her blood sugar was 799!! They immediately sent us on to the ER. When we got there it was 900-1000.... We stayed for 4 days and finally got it down to 200's regularly. Praise Jesus she didn't have any acid or ketones (stumped the doctors with how high her #'s were.. but we know who was in control).

    We got home this past Monday - and Aubrey just wasn't herself. So, I took her back to the doctor and sure enough... our hospital stay resulted in the flu. We caught it early and it has now left the building. HOLY COW, first few days home and having to do sick day care along with learning what everything means.... has been the hardest week of our lives. We have a great endocrinologist team and are very thankful for their support. We are seeing great #'s and doing our best to handle everything we can.

    So, I posted seeking out other parents of Toddlers who have been recently diagnosed,... or those whose children were diagnosed this young. :)

    Your posts have been so helpful and I have spent any free hours - reading and learning. Thank you for posting your stories and wisdom.

    Thank you!!
     
  2. acoppus

    acoppus Approved members

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    My son was diagnosed at almost 2.5 years old. He will be six next month. If you have questions, there are lots of people with great advice here!
     
  3. KHS22

    KHS22 Approved members

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    My daughter was a touch older, just turned 3. That was about 1.5 years ago. I'm happy to listen, talk, answer anything if I can. There are quite a few of us around here with kids diagnosed around the same age.

    Diabetes is never fun - and I do try to see the 'positives' in her being dx at this age (won't remember life without it, normal to her etc).

    BUT - I think its so hard to have little ones dx. They don't know when they are low, are they acting up because they are a toddler, or because they are low/high. They don't eat what you bloused them for, or ate twice as much, they don't understand whats going on, and you can't reason with them etc etc.

    So, I guess why I'm saying this is, be gentle on yourself. Its a HUGE job, that is thankless, that is frustrating, that is heartbreaking.
     
    Last edited: Feb 6, 2015
  4. Snowflake

    Snowflake Approved members

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    My dd was dx-ed at 26 months, and she just turned five. There are quite a few parents on here whose kids were dx-ed very young, some even younger than 2.

    Man, that first year was HARD. Parenting a T1 kid will always be hard, but introduction to an unknown and difficult-to-manage disease combined with a very young child was a real trial by fire. My daughter is just getting to the age where she can express how she's feeling, where she kind of understands why the whole insulin and bg thing, and where she can sometimes feel her lows. That makes a world of difference.

    My best advice for the first several months is to accept any help that friends and family offer, and to lean hard on your endo and CDEs. You're going to have a million questions, and it's always ok to call with them. We still check in with our endo over the phone whenever something wonky is going on that we can't quite figure out on our own.

    Lastly, I assume it's ok to plug another online community on this forum: when my dd was newly diagnosed, I spent a lot of time on the FB group Diapers and Diabetes, which I'm pretty sure is still active and you can find easily by googling. It's a community of parents with infants, toddlers, and preschoolers with T1. Each age group of T1s has its own special issues, so it was nice to be in a place where, for example, the other members understood what it was like to deal with normal toddler sleep issues at the same time as waking up to check bgs. I really needed that understanding at the time. And of course this forum is a fantastic place if you want advice from people who have tons of T1 management experience under their belts.

    Keep us posted on how the first few weeks go. Best of luck!!!!!
     
  5. cdninct

    cdninct Approved members

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    Welcome! My son was diagnosed at 2.5, too. That was over 4 years ago. People often make a big deal of how unusual it is to have a child diagnosed so long, but there do seem to be a whole lot of us out there! Dealing with diabetes in really little people presents its own challenges, but I think there are benefits to it, too. We get to learn about diabetes at a time when our kids are almost entirely in our care. We get to figure out the basics before having to let go of the reins and worry about the independent choices our kids are making!

    In any case, the beginning is pretty awful (even without the flu--yuck!), but what everyone says about it getting much better faster than you can believe at the moment is true.

    Always feel free to post questions--there are lots of us out here ready to weigh in!
     
  6. nebby3

    nebby3 Approved members

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    We are not recent -- my dd was dx 11 yrs ago. She was 19 months old. The up side is she has never known anything else and so far hasn't rebelled against D at all. The toddler years were tough. They are growing rapidly and those growth hormones mess everything up. I found things got better for a few yrs around age 7 until pre puberty hit. A pump is a wonderful thing for a little one. I sure a CGM is too though we didn't have that option when my dd was little. I've been told they adjust better to starting with such devices at 2 or 3 than at 4 or 5.
     
  7. Shayekab

    Shayekab New Member

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    Thank you all for your kind replies! We are a little over a week into this - day 5 at home. It does seem to be getting "easier" if that is possible during this.

    Thank you for the advice. That is fantastic. Luckily, we are surrounded by great friends who have already shown they will not leave our side.

    So, Silly couple of questions.
    Did all of you stay home with your children after diagnosis? my daughter goes to a small inhome daycare and adores it! Her daycare lady is eager to learn the ropes and is ready to take on the challenge... but I am not sure how my nerves will rest. I trust her whole heartedly so I guess just time and practice will do.

    Also - Questions like "what will we do about babysitters now?" and what is it like to spend the day away from home? I am too scared to do any of that at this point while I am still trying to learn her lows. (we don't ever have highs.....yet). They are still doing some nighttime levamir dosing changes as she has quite a few lows at night and a couple during the day.

    I will be keeping my eye on this forum and appreciate you guys taking the time to help out a newbie :)
     
  8. cdninct

    cdninct Approved members

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    I was home with my daughter when my son was diagnosed, so he spent most of the day with me. He was in morning nursery school, though, and he continued to attend after a few weeks off (it was Christmas so he was off anyhow). It was hard to turn care over to someone else, but I learned to divide diabetes care into two parts. One is the day-to-day stuff--if his number is x, do this; if he is going to eat 20g of carbs dose this; check at this time, this time, and this time. As long as you give explicit instructions and are available by phone if there are questions, just about anyone who can be attentive and read or remember a few guidelines can handle diabetes care. The other part is the decision-making stuff--at what numbers should you treat, and with how many carbs or how much insulin? When should Levemir be given? In what doses? This is the stuff that requires more knowledge and care, the stuff that you don't turn over to other people. No matter how long you wait, it will be hard to leave her the first few times, but once you have the basics figured out, you can work out a plan for getting her back to school. Frankly, if you have childcare that is willing to take her on, you are quite blessed. Many, many parents have found that their kids are no longer welcome, officially or unofficially, at their previous daycares or nursery schools.

    Babysitters took us longer. We started small, though, with my husband's university students watching the kids only when no food was being given. Over time, we found a couple who were willing and able to handle mealtimes, but that took us well over a year. If we had had family close by it would have been easier, but we didn't have that fall-back.

    Just take things step by step. Unless you need to get back to work immediately, you can take things slowly. Don't worry about leaving her with anyone for a whole day. Try an hour, then a morning, then a bit more time. It will come!
     
  9. Snowflake

    Snowflake Approved members

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    My daughter did return to preschool a week or so after diagnosis. Both of us parents work, so we don't really have much choice. Plus, she LOVED preschool, and we didn't want to take her away from her "place."

    We've moved states in the last couple of years, so she's attended two preschools with T1, and we've used a couple of other places as bridge care. Both of the regular preschools have been fantastic, with the teachers absolutely willing to get trained, and very competent after learning the ropes. Our state (Colorado) has a great nurse-duty delegation system, so our current preschool brought in a nurse trainer to do all the training and establish a diabetes management plan somewhat similar to that in a public school. When we moved here, we did decide against a couple of centers that either seemed too skittish or too blasse about diabetes.

    And, the places we used for bridge care for one summer when we were between preschools were pretty awful. We had to handle all pokes and shots ourselves, and we never really got comfortable that they would call us if anything came up when we weren't around even though my husband was working a mere block away. Honestly, using those places was a mistake, and I wouldn't recommend leaving your child with anyone who hasn't been thoroughly trained; it's great to hear that your day care provider is so willing! The only way we rationalized it at the time was that my dd already had a continous glucose monitor (CGM), which is huge added peace of mind with a small child not in your care.

    Speaking of CGM, I'll second nebby3: while our endo made us jump through a lot of hoops to start the pump, we were able to get her on the CGM very quickly because of some of these exact concerns about having a toddler in someone else's care and her not recognizing lows. When you can catch your breath in the next couple of weeks, I would say it's at least worth researching (including the insurance coverage, with many more insurers covering it just since we met diabetes).

    good luck!
     
  10. acoppus

    acoppus Approved members

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    So, Silly couple of questions.
    Did all of you stay home with your children after diagnosis? my daughter goes to a small inhome daycare and adores it! Her daycare lady is eager to learn the ropes and is ready to take on the challenge... but I am not sure how my nerves will rest. I trust her whole heartedly so I guess just time and practice will do.

    Also - Questions like "what will we do about babysitters now?" and what is it like to spend the day away from home? I am too scared to do any of that at this point while I am still trying to learn her lows. (we don't ever have highs.....yet). They are still doing some nighttime levamir dosing changes as she has quite a few lows at night and a couple during the day.

    I will be keeping my eye on this forum and appreciate you guys taking the time to help out a newbie :)[/QUOTE]

    My son also went to an in home daycare, and I completely trust the lady with his care. My advice is if you find someone who is eager to learn, teach them!! We have found very few people who are willing or able to care for my son (he also has a peanut allergy, which is a whole other reason people are uncomfortable caring for him). For the week after diagnosis, either my husband or myself went to daycare at meal times to show her how to count carbs, check blood sugar, and draw up and give injections. By the end of the week, the babysitter basically had as much knowledge as we did at that point! Now, almost 4 years in, our daycare lady is still the only person we trust with our son besides the school, and the only place he has ever spent the night away from me. So, it is not easy to trust others, but there more people you have to help you out, the better.
     
  11. Lori_Gaines

    Lori_Gaines Approved members

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    Our daughter was also diagnosed at 2 1/2, and our situation was identical, except ours was in full DKA at diagnosis. Ours was also in a small in home daycare, and our provider was also eager and willing to learn how to care for her. We took the week after diagnosis off to train her. She was amazing!!! As for babysitters, we only leave her in their care for no more than a few hours, with the knowledge that no situation should arise where they need to give insulin. It was a long time though before we would leave her in anyone's care other than her daycare provider.

    Get on a pump and continuous glucose monitor ASAP. Ours was on a pump 4 months after diagnosis and a CGM 7 months after diagnosis. It changes everything. Do you mind me asking where you guys are located?
     
  12. jmgotham

    jmgotham Approved members

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    My daughter was dx'd at 18 months. She is 20 months old now, so it's been about 2 months of our new life.

    Relatively speaking, we're still very new at everything but we're getting into a good routine. We've found that diabetes is different everyday and, while challenging sometimes, it's a struggle we're happy to have since it means our daughter is happy and healthy.

    She has no problems with her finger pricks or her shots. In fact, she often claps when it's all done and says "Yaaaay!" (We got her doing this..) Then, it's back off to playing and being a happy little girl.

    This forum has been a great resource as it's both positive and informative.
     
  13. KHS22

    KHS22 Approved members

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    IF you feel comfortable, take a few days, train her, be available for questions during the first few weeks, give her reading too... I found that helped. But, its up to you and your comfort. I have found technology helps - I can get a text question throughout the day etc. Or some with dexcom share have found it helpful to stay connected.

    As for babysitters - its tough. We have hired nursing students from our local nursing school for babysitting. I sent the school a message, and they happily sent a message to their students to see if anyone was interested. Then, I know they have some background knowledge, they want to learn, and are likely 20 +, not the neighbourhood 13 year old who I wouldn't trust with diabetes.
     
  14. mwstock

    mwstock Approved members

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    My son was diagnosed at four, he will be ten in April! I remember the early years being challenging even at that age. It is a balancing act, trying to find the right balance between the long acting, short acting insulin for meals and corrections to bring elevated blood sugars back into range within 4 hours. I am sorry to hear that your daughter was sick right after being diagnosed. She will need more insulin during those times to combat the high blood sugars. At first you will work very closely with your team, then later on you will learn what needs adjusted. The greatest tool is learning.
     
  15. Snowflake

    Snowflake Approved members

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    There was another recent thread on training sitters, check this out for more ideas, http://forums.childrenwithdiabetes.com/showthread.php?76906-Hello-from-Ottawa&highlight=Babysitting

    Also, I meant to say in my earlier response that even though t1 is hard at this age, my kid and most t1 kids can fully partiticpate in normal childhood activities. Since the age of 3, my daughter has taken swimming, gymnastics, skiing, and rock climbing classes. It has just required a little more work and attention on us parents' part, since of course we wouldn't expect a teacher in 4- session swim class to get trained on d management. In fact, I think we might have gone a little overboard with lessons at a young age just to prove that she can do anything that strikes her fancy! :)
     
  16. LEM's mom

    LEM's mom Approved members

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    My daughter was diagnosed at 20 months. That was a little over two years ago now, but I remember the overwhelming feeling of it all, including child care. She too was in an in-home day care that we absolutely loved. I notified them about her diagnosis while we were in the hospital and they were there visiting her the next day. In the beginning, I was very nervous to have her outside of my or my husband's care, considering it barely felt like we knew what we were doing, but she was back at school within 2 weeks. Her main caregiver arranged to come to the training class as the hospital, which made us feel more comfortable and very supported! In the beginning she did not have the Dexcom and we were using vials and syringes. Because she was on such small doses (1/2 units), we felt more comfortable having my husband stop by at lunch for her lunch time shot. However, they took that over after a month or two, and switching to the pen really helped as well.

    Our daughter now goes to a preschool and using the pump and Dexcom make school management "easy" so to speak. When they have questions or concerns, which is rare at this point, we are able to text back and forth.

    As far as babysitters go, we do not have family in town. We have only ever used her daycare teachers and have never left her overnight. As I said, we are a little over two years in and have planned our first vacation without kids at the end of February. My parents and sister will be watching the kids and I have to admit I'm nervous. I'm actually comforted to know that she will be at preschool during the weekdays while we are gone where they are pretty self-sufficient at managing her diabetes.

    To add to other poster's comments, she's only 3 and has done swim lessons, played on a soccer team, been to MANY birthday parties with bounce houses, trampolines, pizza, and cake. You'll find she can do anything she likes with some extra work.
     
  17. Shayekab

    Shayekab New Member

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    WOW, thank you so much for your responses. I read each one and the advice is fantastic!!!

    We let her go 1/2 day today to daycare - I came at lunch and we have given her daycare teacher a lot of teaching and watching. I am praying the next couple of weeks continue to stay on an uphill pace...

    Lori - We are located in Tulsa, OK - Anyone near here?

    I love the advice for babysitters (nurses is a great option!!) and about activities. That is fantastic.... We have a hard time with insurance so the pump/CGM may have to wait a little longer, but I am okay with that for now.

    THank you guys again - this forum has been a blessing!!
     
  18. Lori_Gaines

    Lori_Gaines Approved members

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    We are way over here in California! I was just curious. :D

    Another couple of thoughts on babysitters: Find out if there are diabetes camps in your area. The camp counselors are great options! Also, I teach high school, and we have 15 Type 1s, so they would be perfect if I needed someone for more than a couple of hours. If you know any teachers, ask. You never know!
     
  19. steph

    steph Approved members

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    My 4yo daughter was DXed at 18mos just 2 weeks bf Christmas. That first Christmas with foods with unknown carbs counts and cousins running around with cookies and candy was nerve racking. We had lots of calls to the endo. Those first few months were tough and the lows during her honeymoon were scary. She had to go off basal insulin completely for a few months. I remember feeling so weird and incompetent the first time I gave her a shot in a restaurant. I remember when Christmas came around the next year, we were amazed at how far we had come, how confident and comfortable with our "new normal" as some people call it. It gets easier. Reminding yourself that managing blood sugar isn't an exact science but more like an art you get the hang of through practice can help. There will always be wonky numbers here and there, and your daughter will be ok.

    My daughter was also at a home daycare, and we also have no family around us. We taught her teacher everything as we learned it and copied what the nurses did with us, even letting her practice injecting saline into my arm. She is awesome and is almost just as good as we are at knowing how to manage different situations that I went everyday at lunch for the first week, and we did carb free snacks to avoid needing shots at that time. Her favorites were string cheese, pickles, pretty much any veggies and ranch, celery and peanut butter or cream cheese, rolled up lunchmeat.

    I know it's expensive, but getting a cgm was a total game changer for us. We didn't get one until she was 3 1/2, but I wish we did it sooner. It is worth it even paying totally out of pocket if you can swing it financially. Although if you're anything like we were, you have a hefty ER bill hanging over you. The cgm meant we could start sleeping through the night and didn't have to wonder every time she was fussy or tired if she was really low. I know it might seem like too much right now with everything else, but I would encourage you that as soon as you are able to look into one.

    This forum has been a God-send. When we decided to get a pump, I came here for advice. When my daughter developed her first illness since DX while we were on our first vacation ever with her, I came here. When her old endo made some crazy suggestions and totally freaked me out, I came here. These people are awesome :) I've also gotten to meet some awesome people in person through our local JDRF chapter, so I recommend reaching out to them too if you have not already. Best of luck on this wild ride. We're all in it together.
     
  20. kail

    kail Approved members

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    My daughter was diagnosed a little over a year ago when she was just past 3 years. Its been a long year. Just when we get a little comfortable then new challenges arise. We did put our daughter back into her preschool right after diagnosis because it was only a couple days a week and it was part of the school district so there was a nurse there at lunch time to dose her insulin and there were alot of aides in the class as some other children there had special needs. Otherwise we have only left her with my sister for an hour or less to babysit. Ultimately I think my sister would be fine but although we have taught her a little we have not followed through to have her actually practice it and so we would have to work on that if we actually needed her to babysit.
     

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