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kentuckymom

Parents of type 1 diabetics - come talk to me - update in post #19

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I'm in the hospital right now with my 6 year old. She was officially diagnosed with type 1 diabetes about 12 hours ago. The good news is that we caught it before she got super sick. We brought her to our doctor's office's weekend walk in clinic yesterday after she'd spent a week peeing more and more often every day. After she was up five times between going to bed Saturday and and waking up Sunday we decided to go ahead and bring her in instead of waiting and making an appointment on Monday. We were hoping there was a simple solution like a UTI or constipation (her brother suffered from this for years, and it often caused exactly the same symptoms), but the possibility of diabetes was always in the back of our minds. When we went to the clinic yesterday they tested her sugar and it was off the charts. They sent us to the ER at Kentucky Children's Hospital, where the diabetes diagnosis was confirmed. They've done a great job, and her sugar is down to 200 as of the measurement an hour ago, which of course is still high but is a huge improvement.

 

We're promised to be swamped with information today, but I'd love to hear some experiences and encouragement from the trenches. The doctor assured us yesterday that, despite the changes, our daughter can still live a pretty normal life, but it all feels overwhelming right now. Of course it doesn't help that I only got a few hours of sleep here in the hospital last night and I woke up a lot the night before because my daughter kept waking up.

 

 

Edited by kentuckymom

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I am so sorry to hear about the diagnosis. Dd was diagnosed when she was 9. It is quite a journey, that is for sure.

 

It will be all consuming at first, then become a new normal over time. Be patient with her, yourself, and other family members who might do things differently than you.

 

You can do this! Because you have no other option. And because there is strength in you that you didn't know you had.

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It is overwhelming at first. But you will adapt (and she will, too) at near lightning speed. Before you know it, you'll be an expert, so to speak. Write everything down when talking to the endo and nurses. You'll get all sorts of info in the form of books and pamphlets. Highlight the most important stuff. You will screw up, especially when counting carbs. That's normal. Just adjust where you can and keep chugging along. The carb counting was overwhelming for me, at first. But in just a few weeks I knew many of the numbers by heart or at least was in the ballpark. We've made many mistakes. Ds15 has even accidentally taken two nighttime doses before. We just got in touch with our endo and everything was fine. Take time to stop and breathe. Rely on the nurses and doc. They expect lots of questions and frustration with something like this.

(((Hugs))). It gets easier! Sooner, rather than later. Feel free to PM me if you need to.

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Thanks for the hugs and encouragement. We met a member of the endo team today. We got checked in too late yesterday to meet him, and he was very encouraging. He said that medically our daughter can be released at  any time. If we feel educated enough to handle her at home by the end of today we can go, but they're happy to let us stay another day if we feel like we need it. 

 

I'm not the least bit nervous about the actual giving of shots. I've already given her one and it was super easy. I had to give myself a blood thinner every day when I was pregnant with her, so giving shots is old hat for me even though it's been six years.  DH, however, has to look away whenever he gets a shot, so it will be a big adjustment for him. I'm nervous about figuring out carbs and insulin doses and messing her up once we're home, however.

 

I'm also nervous about sending her back to school. I homeschool just one of my two kids, and this is the one who goes to school. Her school is wonderful and she's thriving, so I don't want to pull her out just because she now has a medical condition. The endo assured us that schools are well prepared for diabetics and there are sure to be others in her school, but the idea of handing her off to others for seven hours still scares me.

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My son was 6 when he was diagnosed as well. We didn't realize he was sick for several weeks. Good job on catching it so soon!

I remember the first time we left the house after coming home from the hospital. It was like having a new baby! There are so many extra things to think about and bring along! You will get into a routine, though, and adjust to a new normal.

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I know what a huge change this is but it will all feel normal one day. My dd was diagnosed when she was 4 1/2. She is now 12 and doing just fine - counting carbs and dosing, etc. is just one more part of our days and doesn't feel like some big medical THING anymore. :)

 

Your endo sounds really supportive - that's great! A good support team can make a world of difference. 

 

It sounds like you're doing really well but I wanted to give you  :grouphug:  :grouphug:  and say that it really will get easier.

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Kentuckymom, you have all my sympathy!!! I am so sad for your sweet DD. It is so hard at first, but you already sound like you are making the best of it! She is going to be tough and learn a lot about discipline and taking good care of herself!

 

My oldest DD was 6 when she was diagnosed, and I remember being so overwhelmed. I had a newborn at the time, and managing diabetes felt like having another newborn all over again...all the supplies, strict feeding schedule, just leaving the house was so tricky. But you get used to it so fast.

 

Something simple that helped me right off the bat when we got home from the hospital was just getting the supplies organized, getting a sharps container going (aka empty laundry detergent bottle). I'm not a super organized person, but having the diabetes stuff organized helped me feel in control.

 

In reality, though, we are never in control. I went through a period of taking every blood sugar reading so personally...as though because I was the one controlling everything she ate, I should be able to control all the numbers. And when I couldn't and they were high I beat myself up for it. Letting go of control is hard.

 

Now DD is 14 and we are facing the adolescent issues of hormones messing up the numbers and trying to negotiate the peaceful transfer of power from mostly us to mostly her...with lots of blood sugar checks and bolusing falling through the cracks and a crappy A1C.

 

But you just keep doing it. You just keep doing your best. Keeping up those endo appointments every three months and readjusting. There really is no better time to have diabetes than now. Even a little over 100 years ago the prognosis for our children would have been grim.

 

Hang in there, you have got this!!

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Regarding the school issue--I am a substitute school nurse, and have several schools where I work that have diabetic students.  The doctor provides the school with a formal Diabetic Management Plan with instructions on what to do and when.  The schools take the responsibility for these students very seriously.  The nurses I substitute for are fantastic and experienced at working with the kids and families to keep the children safe. The nurses educate the teachers and PE teachers/coaches on signs and symptoms of hypo/hyperglycemia.  Also VERY cool are the constant glucose monitors and insulin pumps that really help the child/parent/nurse know what kinds of patterns the child has, and alerts for lows and highs.

 

(I do know there are states that don't have nurse coverage at every school.  If that's the case, do a little research on what are best practices.  Schools would usually rather pay for a nurse than a lawsuit..)

 

I'm sure it is really stressful and scary right now, but it will get so much better.  

 

And GREAT JOB on making the right call regarding bringing her in when you did!

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My dd was diagnosed at age 10. Everyone gave you great advice and thoughts. I would only add in, allow yourselves time to grieve if you need to. I held my dd many nights while she cried for the life she used to have. And it's ok to be sad. It's a big life change.

 

One of the best things we ever did was get my dd a CGM (continuous glucose monitor). I sleep so much better at night now that she has it. It does what its name says amd gives us a blood sugar reading every 5 min. I can make better dosing decisions with it since i can see how stable (or not) her numbers are. We tried a pump for a while but for many reasons went back to MDI (multiple Daily injections). YMMV

 

As others have said, feel free to pm me at any point if you need someone to vent to, or just chat. ☺

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We have a 1st grader in my AWANA class with Type 1 Diabetes.  He has a monitor and his mother can monitor his blood sugar from her phone.  We make sure the cell phone number goes with whatever adult is with the kids at the moment, so his parents can be called if necessary. But The monitor also alarms when he goes low, which helps me (who doesn't know anything about diabetes).  And since his mother is monitoring she's often right there at the door before we can get our phones out and call. I know he goes to public school so the schools can definitely handle this.

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My dd was diagnosed at age 10. Everyone gave you great advice and thoughts. I would only add in, allow yourselves time to grieve if you need to. I held my dd many nights while she cried for the life she used to have. And it's ok to be sad. It's a big life change.

 

 

Yes, this is important. I remember looking at my infant daughter lying in her crib with her perfect newborn pancreas and crying buckets over my older daughter's dying one. 😢😢😢 But nobody's body stays perfect forever. We're all collecting battle scars, and that perfect newborn now has Celiac disease. Grieve, process, and get back to the business of living, however that looks now.

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And right from the very beginning, do not judge the blood glucose numbers. They are not a reflection on her worth or yours, or even of compliance. They are information on what to do next. Judging sets up for emotions such as shame, embarrassment, fear, and behaviors such as avoidance, hiding, sneaking.

 

A good thing to say is, "Thanks for checking."

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Thanks again for the tips and encouragement, everyone. I may PM those of you who offered if I have more questions (and I'm sure I will). I also know two couples locally with kids who are diabetic and they've both offered advice and help, so it seems like I will have plenty of sources to turn to in the coming days.

 

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First, welcome to the club that no one wants to join. You and your daughter will be just fine. Living with Type 1 will become your new normal. Our son was diagnosed almost 13 years ago at age 10. It will get easier. I haven't read all the posts, but just off the top of my head, let me offer a few hints.

 

You will be given booklets and websites with carb counts. Use these to compile your own little book of your daughter's favorite foods. Keep one in the kitchen and one in her D bag, so you don't have to keep looking the same foods up, until you learn them, and you will learn them and soon even be able to eyeball foods that you can't measure when away from home. We still measure some foods. Have plenty of measuring cups and spoons handy. We've never used one, but some people even invest in a good scale. Some foods are harder to cover with insulin than others. You will learn this by trial and error.

 

You will need to keep good records, especially in the beginning. You will be asked to bring them with you to the endo's visit. You may be asked to bring a record of blood sugars and food log. Find one that works for you. The ones we were first given were so tiny. I couldn't squeeze everything on them. Use a notebook, or make your own forms. We also use a dry erase board with color coded markers. It helps when looking for blood sugar patterns.

 

Learn everything you can, and do what works for you. Ds has never had a pump and doesn't want one. 

 

Puberty is wild! You will survive. Sick days are tough, but knowledge is power.

 

We homeschooled, so I never dealt with school nurses. I would strongly recommend you work with your school and get a care plan on file as soon as possible.  I can't remember the name...Section 504???? Someone here may be able to help you with this.

 

For my son, sometimes opening a new bottle of insulin will cause us to have to adjust dosages.

 

Don't make a big deal of blood sugar readings with your daughter. My son would often apologize for numbers out of target range, which would break my heart. Make sure she understands that it's not her fault. The only consistent thing about Type 1 is its inconsistency.  :)

 

Finally, and the hardest thing to admit...is you can't control this. You can manage it, but you can't control it. There are so many things that affect blood sugars, not just food. Physical activity, stress, excitement, illness all affect blood sugars. Some people's numbers will shoot up during early morning hours. Some people drop during the night. Most of the time, you will get the numbers you are expecting. Sometimes, you will get a number out of nowhere. You daughter can eat the exact same foods every day at the exact same time and have very different numbers from day to day. You can't control it, but you can adjust and give corrections.

 

 

We finished our homeschooling journey years ago. I don't post, but still read the boards. I'd be happy to answer any questions.

 

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Hugs! It's so hard. Dd was dxd at 23 months old. I sobbed and sobbed and sobbed about it. I was a wreck.

 

Things get easier. It's been 8 years and it is definitely a new normal for us. I second (or third) a CGM. LIFECHANGING! I actually can sleep at night now.

 

And I agree with a pp- do NOT take wonky blood sugar numbers personally. There will be highs and lows and forgotten boluses and miscounted carbs. Fix it and move on but do not blame. Living with diabetes sucks enough as it is. You do your best, and look for blood sugar trends and patterns so you can make insulin adjustments, and that's it. I have heard that if blood sugar is "in range" half the time, you're doing okay. It's hard.

 

The book "Think like a pancreas" was really helpful, as well as the children with diabetes forums.

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I haven't read all the replies so I don't know if it's been said, but it's worth splurging on a cute meter case or bag to carry supplies. The black cases that come with them are lame. Diabetes sucks but your diabetes bag doesn't have to.

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Thanks for the tips everyone! We came home last night. I've already had a freakout over her number at 2am, which just read HI, but I reminded myself that the nurse said one HI is not an emergency and made myself go back to sleep. She was down to 304 before breakfast so that made me feel better. 

 

My husband talked to the school nurse for half an hour this morning and he said it was really encouraging. We have a meeting scheduled next Tuesday to make an official plan, but DD can return to school before that with her necessary supplies and an unofficial plan. The nurse splits time between two schools, but she will always make a point to be there for Kittygirl's lunchtime, and she'll stay for the whole day her first day back (probably tomorrow). Because she has an IEP for speech already, the medical plan will just be added to that as opposed to her getting a 504 plan. I presume that at some point she'll graduate from speech and we'll have to transfer the diabetes plan to a 504. I only wish she could graduate from that.

 

Thanks again for all the tips! I'm already making note of some of them and will make them part of my organizational plan. I am naturally a fly by the seat of my pants kind of girl, so I'm going to have to learn a lot about organization really fast.

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I just wanted to update in case anyone was  curious. We're now into week 3 post diagnosis and we've mostly settled into our new normal. Kittygirl has been a real trooper. She says "ouch" occasionally, but she normally just offers up her finger or arm or leg willingly because she knows it's what we need to do now to keep her healthy. Her school has been amazing. In addition to the nurse, her teacher and another teacher have been trained to do everything and the aide has been trained to check her blood sugar. She has a whole file that travels with the class recording her blood sugar. All the staff who work with her have assured me that they'll take good care of her. I came in and read a book to the class that we got at our diabetes education class about a monkey named Coco (who is friends with Mickey Mouse) who is diagnosed with Type 1 diabetes. DD and I demonstrated with her AG doll and and AG diabetes care kit that a friend gave her what she has to do to stay healthy. We assured the kids that they cannot catch diabetes from Kittygirl and that she did nothing to cause it.

 

All kinds of people have been praying for us and offering us support. It still feels overwhelming at times and I wish this hadn't happened to us, but I'm not terrified and consumed with grief like I was two weeks ago.

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I am so glad things are going so well! It is such a hard transition to this "new normal" but you'll get there. One day you'll know the carb count of most foods off the top of your head and things will be much more automatic. You can do it!

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