My 9-year-old daughter diagnosed almost one month


(Divina) #1

Hi!

My 9-year-old daughter was diagnosed with T1D almost a month ago. Although she and our family have been on an emotional roller coaster ride the first couple of weeks, she has been really great with checking her own BG and helping to prep her insulin pens.

However, in just the last couple of days, she started getting really angry and upset. She gets frustrated when it’s time to check her BG. She yells and even starts hitting me and says she wants to die.

Prior to her diagnosis, she was heavily involved with her dance company, dancing ballet, tap, jazz, hip hop, etc. She is also a singer and actor, and she had a lead role this summer in her children’s theatre production this summer. She also played community basketball. However, right now, she wants none of that. She went to her first dance class after her diagnosis and hospital stay, but broke down crying. She never returned since then. Every time I mention or asks if she wants to go back to dance or even dance at home, she starts yelling and gets angry at me for talking about it.

She will occasionally go on walks with me or dance casually at home, and she will attend school. She enjoys school. At home, She loves drawing, coloring, creating arts and crafts, making slime, watching movies on Netflix and YouTube. It seems that this is her way of coping, and right now her only way.

I am constantly a nervous wreck, always worried, and always crying about everything! Her hair is also falling out, and this terrifies me. I was doing okay with meal plans, insulin injections, and overall managing things, but since she has become so angry, I am so emotional and overwhelmed. She refuses to see any therapists or talk to other kids with T1D.

Does anyone experience this? Any pointers?

Thankful for this forum!


(Sarah) #2

Give her time…this is a BIG adjustment for your family. She will do what she needs. Keep encouraging her to continue on with the things she loves to do. She can still do them, it just may take a little work. Hang in there. You are doing a great job.


(Divina) #3

Thank you very much for your encouragement, Sarah. I really appreciate it!


(Dennis J. Dacey, PwD) #4

Hi Divina @Divinadsp20, Warm Welcome to TypeOneNation!
I can feel your anguish and upset. The “good news” is, as @Sarahanne says, is that your daughter will be able to do everything and anything she desires - diabetes will not hold her back and will most probably strengthen her and provide her with ambition to succeed.
I’m not just quoting that from a book, but from my experience living with diabetes for 60++ years and being successful in business and full-life living, and also my granddaughter’s experience becoming Open champion Irish step-dancer including twice being selected as World Competitor and now a professional point ballerina. No, my granddaughter does not have diabetes [she checked my BG when she was 4 and gave me shots by age 7] but she was very premature birth born without an immune system and partial lung. She fights harder than most to succeed and when I traveled with her for dance competitions my flight carry-on contained her breathing machine.
My suggestion for you is don’t push your daughter to a point where she feels it, but rather in indirect ways challenge her to return to the activities she loves - she will get over the very natural “anger” and “why me” that she is now experiencing - yes, love her and let her know that she is no less loved and cherished than she was at any time before her diagnosis. Her siblings can be of great support and encourage her to “being a girl” and living a full life. It might be better for you and her siblings to just do stuff for her and not make a big thing of it - Just this last year at a family gathering, a couple of my sisters mentioned “little” things that I never realized but always appreciated. If possible, have her attend with you an event where she will meet other people with diabetes and see that they are really living life - check the JDFR “Events” and see activities in your region.

Whatever Divina, take care of yourself - your daughter will do just fine.


(Divina) #5

Hi Dennis,

Thank you for your kind welcome and for sharing your experiences. I’ve been browsing through the forum since my daughter’s diagnosis but was still uncomfortable with sending any messages. I noticed that you have been a “light of hope” to so many. :heart:

Your story, as well as your granddaughter’s story, are very inspirational!! I am amazed by how strong you and your granddaughter are. I love hearing about positive experiences, and it helps to know that we are not alone. I will heed your advice and take things one day at a time, encouraging my daughter, helping her out, and giving her lots of love. She has an older brother who sometimes helps to lift up her spirits. You have given me hope as a parent, and I really appreciate it.

We live in Hawaii and just recently experienced an “almost-hurricane.” It weakened into a tropical storm. We were home for four days straight getting prepared and waiting. That, on top of my daughter’s new diagnosis, added to my stress. But I feel a little better now. Just reaching out for support and having a forum such as this helps to ease the uncertainty and frustrations.

Thank you!!


(Dennis J. Dacey, PwD) #6

Divina,
I know how it is reaching out, especially the first time - I had been very reluctant at first too, but now …… Keep in mind that I am not a medical doctor and the suggestions I offer are based on my personal experience living with diabetes and reliable information shared by others with me. I said I’m not a medical doctor, but on occasion, doctors have come to me for suggestions for treating patients; including one doctor who lectures at the university medical college who asked me to assist for diabetes matters.

I live in Florida and have prepared for several "near - miss " hurricanes, including one last year that knocked out power for almost a week. Take this as a dry-run for you and your daughter and keep her “life-saving” necessities in an easy to pick-up location in case of evacuation. Have a check list and always have more ready than you think she will need. I’m happy to hear that you missed Lane’s brunt - well the wind part but I saw that the rains caused flooding and necessitated evacuations.


(joe) #7

@Divinadsp20. I am sorry to hear about your young daughters recent diagnosis. Sorry in advance for any spelling errors but I am replying using my phone.

In addition to what @Dennis said, please realize your daughters perspective. She’s 9 and has never had to deal with this kind of loss. She’s very likely never had anyone say “you have a lifelong incurable disease” to her before. And above all else, if you are upset and crying it could likely be the most terrifying thing in her world. If she gets it in her head that she is making you sad, it could be very emotionally upsetting for her.

In my opinion, you must lead by example here on both taking care of yourself and in positive attitude. You have to be an emotional rock no matter what you are feeling because she will look to you for how she should react and for support. This may be the toughest job in parenting you will have to do and I feel for you, but you have to do it to support her right now.

I’ve had this for nearly 40 years and went through many years of depression before I found peace and acceptance. This will take time. The next couple years will be a challenge but if I can do it then so can you and your daughter. Keep an ear out for more signs of depression and comments about wanting to die. Clinical depression is treatable but isn’t something you can snap out of easily on your own. I am rooting for you both.


(Rachel) #8

Hi @Divinadsp20 I would like to give my words on this matter, I’ve only been living with T1D for 7 months now and I understand what your daughter is going through. Within the first month or two I really did not feel like I could do anything due to the fact I had T1D. There were so many worries in my head like, “I can go low and not know then pass out if I run,” or “If I eat this I can go high and what if I mess up on carb counting. I don’t want keystones again.”

Knowing this I would lock up myself and got mad at the tiniest of things when my parents ate cake while I could only have the sugar free cookies. It was bothersome but then while time went on I went to a camp called Camp Kudzu and saw so many other kids who are younger than me and living with it for much longer.

I also got to meet a T1D wrestler who advocates for T1D and it inspired me and pushed me to get out of my hole in the ground and make adjustments. Like when I got out for my 5am runs I do bring my sugars and everything in a book bag so I can run with ease.

It does take time for T1D’s to realize they are not alone and yes at first everything is scary. But as time goes on she should feel better seeing people that also have it. It might help to show her this and show her shes not alone maybe even find a T1D friend.

Another thing is she may feel alone due to it may be hard to find another T1D in her school or wherever she is. She will get frustrated when it time to check her BG and that is normal because she doesn’t know any one else. I also hate checking my BG but I know I do it so I don’t go into an accidental DKA or low. (what my family calls it super low)

If you can try getting her a bear or something for T1D I have about a million (Not really but a lot) of those because it makes me feel supported being the only T1D in my house. I love them and I plan to go on the Atlanta One Walk in October knowing that I can raise money for a cure is great.

I hoped this helped any at all and what is most important is just letting her know she is not alone and she has support when she needs it. Time is essence also is supporting her through struggles you may not understand. For me my struggle is remembering to check during the night but that is me everyone is different.

Take Care.


(Laura Neyer) #9

Hello! I have a 9-year old son who was diagnosed a little over a year ago. Sports are his big motivation that he can do everything other kids can (sometimes even better!). He’s usually pretty strong but has a few times verbally expressed frustration in why he has to do things differently than other kids. “Why can’t they just make an artificial pancreas or find a cure?” I wonder if it might help to share stories and pics of other t1d kids that are in same type of activities as she is. Stories and pics that tell they are successful in the activities despite the additional work they need to do. I’m happy to share my son’s hockey and baseball pics… not exactly similar activities, but maybe it can still relate due to activity and just knowing there are other kids like her - she’s not alone.


(Divina) #10

Thank you, Rachel. I appreciate you sharing your experiences and advice. I am looking into having her meet other T1D children, and I just learned that there is a camp coming up in November. I hope she will agree to it and see that she’s not alone. I will also be more supportive and allow her to take her time when it comes to returning to dance.

Sending you blessings!


(Divina) #11

Hi Laura!

Thank you for sharing! How long after his diagnosis did your son return to sports? It sounds like he’s very intelligent, thoughtful, and active. I would be happy to share your son’s pics with my daughter if you don’t mind sending them. She is intelligent as well and was very active until after her hospital stay. Perhaps, they can communicate via email, text, or social media?

Blessings to you and your family!


(Laura Neyer) #12

Nate was lucky that he didn’t have to go to a hospital after diagnosis. We went from pediatrician to ped endocrinologist. He was back home that night. He was back at baseball 2 days later for a game then hockey 3 or 4 days later. I do remember that he was hesitant to get back to hockey. I basically told him we needed to give it a try and go and just brought him to the rink. I know he was scared for some reason. He ended up getting off the ice a little early, just said he didn’t feel well. His numbers were in range so I’m not really sure what that was. I was just glad he got out there. The next week he had a full week of a 5 day hockey camp (8am - 4pm). That was one long week!!! But after that he doesn’t act any different than before his diagnosis. Over memorial day we went to a 4 day tournament in Anaheim too!

She is welcome to follow him on Pinterest under Nathan Tyler Neyer.

I’ve will send some pics. This mail wont allow me to send multiple pics at once due to size so I will try a few one by one.

Laura


(Laura Neyer) #13

More pics


(Laura Neyer) #14

More pics


(Laura Neyer) #15

Nate was lucky that he didn’t have to go to a hospital after diagnosis. We went from pediatrician to ped endocrinologist. He was back home that night. He was back at baseball 2 days later for a game then hockey 3 or 4 days later. I do remember that he was hesitant to get back to hockey. I basically told him we needed to give it a try and go and just brought him to the rink. I know he was scared for some reason. He ended up getting off the ice a little early, just said he didn’t feel well. His numbers were in range so I’m not really sure what that was. I was just glad he got out there. The next week he had a full week of a 5 day hockey camp (8am - 4pm). That was one long week!!! But after that he doesn’t act any different than before his diagnosis. Over memorial day we went to a 4 day tournament in Anaheim too!

She is welcome to follow him on Pinterest under Nathan Tyler Neyer.

I’ve attached some pics. I included some with a few other activities he likes too, horseback riding and golf. There’s nothing he won’t do now!

Laura

Divinadsp20

      [Divina](https://forum.typeonenation.org/u/divinadsp20)




    September 1

Hi Laura!

Thank you for sharing! How long after his diagnosis did your son return to sports? It sounds like he’s very intelligent, thoughtful, and active. I would be happy to share your son’s pics with my daughter if you don’t mind sending them. She is intelligent as well and was very active until after her hospital stay. Perhaps, they can communicate via email, text, or social media?

Blessings to you and your family!


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In Reply To

lalaney1

      [Laura Neyer](https://forum.typeonenation.org/u/lalaney1)




    August 31

Hello! I have a 9-year old son who was diagnosed a little over a year ago. Sports are his big motivation that he can do everything other kids can (sometimes even better!). He’s usually pretty strong but has a few times verbally expressed frustration in why he has to do things differently than other …


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(Laura Neyer) #16

Nate was lucky that he didn’t have to go to a hospital after diagnosis. We went from pediatrician to ped endocrinologist. He was back home that night. He was back at baseball 2 days later for a game then hockey 3 or 4 days later. I do remember that he was hesitant to get back to hockey. I basically told him we needed to give it a try and go and just brought him to the rink. I know he was scared for some reason. He ended up getting off the ice a little early, just said he didn’t feel well. His numbers were in range so I’m not really sure what that was. I was just glad he got out there. The next week he had a full week of a 5 day hockey camp (8am - 4pm). That was one long week!!! But after that he doesn’t act any different than before his diagnosis. Over memorial day we went to a 4 day tournament in Anaheim too!

She is welcome to follow him on Pinterest under Nathan Tyler Neyer.

I’ve attached some pics. I included some with a few other activities he likes too, horseback riding and golf. There’s nothing he won’t do now!

Laura

Divinadsp20

      [Divina](https://forum.typeonenation.org/u/divinadsp20)




    September 1

Hi Laura!

Thank you for sharing! How long after his diagnosis did your son return to sports? It sounds like he’s very intelligent, thoughtful, and active. I would be happy to share your son’s pics with my daughter if you don’t mind sending them. She is intelligent as well and was very active until after her hospital stay. Perhaps, they can communicate via email, text, or social media?

Blessings to you and your family!


Visit Topic or reply to this email to respond.


In Reply To

lalaney1

      [Laura Neyer](https://forum.typeonenation.org/u/lalaney1)




    August 31

Hello! I have a 9-year old son who was diagnosed a little over a year ago. Sports are his big motivation that he can do everything other kids can (sometimes even better!). He’s usually pretty strong but has a few times verbally expressed frustration in why he has to do things differently than other …


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To unsubscribe from these emails, click here.


(Divina) #17

Thank you for sharing, Laura! Your son is doing awesome! Does he have a cgm and insulin pump? Or does he have the insulin pen and bg meter? Caitlin’s fear or hesitancy is she doesn’t want to have to check her bg, eat a snack, dance, check in the middle, check at the end, and eat a snack after. I think she feels that it’s too much work and it’s not normal.


(Laura Neyer) #18

Nate has pump tslim x2 and cgm dexcom 5 (since last October). He has iPhone 7 he uses as transmitter. We recently got him an Applewatch for easier visibility of cgm numbers during school. Personally, inactivity during school hours is way more frustrating for Nate and I than any sporting event.

We did do this at one time with a pen and no cgm (first 2 months after diagnosis, no cgm). It is more difficult with pen and only pricks because pens can’t microdose to really small amounts, you can’t adjust basal insulin on the fly (give more, give less, turn off completely or adjust to a percentage)and you cannot see bg trending up and down, so you are always pricking. It’s more difficult to truly learn how situations impact them without a cgm.

The cgm is a must to make sure I can be as proactive as possible no matter where the numbers go. It’s definitely a balancing act that I bear the most of the responsibility of. I want him to feel as normal as possible so I do whatever I can to get him “ready” (numbers in range) before an event. This is often really difficult for me because I work with a substantial commute to home and have a small window of time to get Nate to practice (ideally 1 - 1.5 hours for food and insulin to balance out). I usually only have 45 min. As time goes by I have him share in the troubleshooting with me so that one day he can do this all on his own… maybe 11 or 12? Way too early now at 9 for him.

I always make sure he eats before he gets on the ice. More often than not his numbers go high due to adrenaline when he starts playing, especially hockey. If it’s a game he rarely gets close to low, keeping him in low enough to be in range is a challenge. If it’s a lower key practice as long as we start around 120 - 150, he is fine. But I always make sure he eats, ideally 45 min. - 1 hour before.

Baseball is lower key, but I often don’t know how his bg will be affected until we know what position he is playing 15 min. before game. Pitching and catching exerts much more energy than 1st base so again, we start in range ideally above 120 and I watch cgm. We always disconnect pump for practices and games for every sport, so again, he’s not getting basal insulin for 1- 2 hours and his bg will begin slight trending up not down.

We really don’t interrupt in the middle of what is going on unless his cgm shows a downward trend at 90. We do test before when he eats… it’s more than a snack, I generally shoot for a meal or mini meal no less than 20 carbs. We do this anyway for dinner so this really is not more pricks in most situations. Based on where his number is at before eating, we decide together if he should dose for full carbs or sometimes we do less knowing he’s got rigorous activity ahead. If his numbers shoot up our Endo has advised to leave the adrenaline rush alone. It goes down within 1 hour after event. If not we would then consider dosing lightly to bring it down. If you dose and the adrenaline comes down at same time you are more likely to hit a low.

If things look ok on Dexcom (these general trends I noted) I don’t fingerprick. I feel the less finger pricks the more unusual the event will feel for him. If numbers are trending low I do fingerprick.

Theres no exact sure way to do this, each kid, food, activity will affect them differently. I read a ton about exercise, nutrition and type 1 and learn with every event. I have some “go to” foods that are consistent with a good experience for him that generally help, but it takes some time to see patterns, I’m about 1 year into doing this with cgm and pump. I take a lot of notes on my phone :slight_smile: so I always have them with me. Best books I’ve read are “Think Like A Pancreas” and “Sugar surfing”.

I think a cgm is most important. Do you have one? We have custom decals made for Nate’s with his team logo in them. (Cgm transmitter and pump decal). His teammates think it’s the coolest thing.

My daughter is in gymnastics and has seen some girls with cgms on their arms. I’m guessing that’s a little closer for your daughter to relate to. They have long practiced and 4 - 5 hour competitions! Cgm would be a necessity. A gym environment would e great for cgm. It’s the outdoor sports with way more distance that dont always get a read.

Sorry so much info, but I could ramble on for hours. Maybe she just needs to eat 1 hour before and do a good check 15 min before eating. Dose a little less (85% of what you would normally do) and see how it goes? Leave it up to her when she pricks again?

Admittedly, I was put in a lot of situations I didnt feel 100% great about when we started this. I had to trust in some of his decisions and respect what he wanted to do “in the moment”.

I hope this helps. With cgm and time it does get more consistent.

Laura


#19

Divina, do you live on Oahu? If so, I know at the Kapi’olani Medical Center has Child Life Specialists. The job of a CLS is to help chronically ill children and their families cope with medical issues. They have tons of resources to help you and your daughter (toys, games, motivational tools, etc.) A CLS would also understand if your daughter doesn’t really want to talk to someone, and could piggy-back on one of your follow up endocrinology appointments easily. I’m studying to be a CLS now, and would love to intern at this department! Kapiolani Child Life Services: 1-808-983-8320

You and your daughter are both grieving right now, and that is a normal part of getting a life-changing diagnosis. Anger is one of the 5 stages, and so is depression. Grief is a process that both you and she have the right to go through, because you have both experienced a loss here. It sounds like you are doing a good job providing her with support, and giving her opportunities for fun and play. You are a good mom!! Play is so so so important in childhood, so making sure she has chances to enjoy that great weather you have in HI, and play at the beach, will help her cope. Does your daughter like American Girls? If so check this out: https://www.americangirl.com/shop/ag/diabetes-care-kit-for-dolls-dhv55

For dance, when she is ready (try not to let her completely stop. If she hasn’t said she wants to do any activity 6 months after her diagnosis, it would be worth considering just signing her up for something so that she can feel like her life is becoming normal again. I did dance and cheer and drama in high school with T1D, and my routine was to eat an Uncrustable (PB&J) an hour before my workout, and I would test when I could but sometimes I didn’t. I wouldn’t recommend that, but there are CGMs that are not connected to pumps that might make life easier for you and your daughter. Have you considered the FreeStyle Libre? I understand hating testing, it’s definitely my least favorite part of diabetes management! https://www.myfreestyle.com/provider/ If she is shy to wear something on her body, remind her she can put it on her belly, bottom, lower back or upper thighs where no one will see because it’s covered.

If you need to talk or have questions, please feel free to reach out to me by email at michelle@nau.edu. I would love to talk to you about other things that can help your daughter and your family cope with her new diabetes diagnosis. Hugs!!


(Divina) #20

Thank you so much, Laura!! Yes, we recently had an appointment with Health Management and a nurse with T1D. She mentioned that she would be eligible for a cgm and insulin pump in a couple of months.

Thank you for the tips. We will certainly try them out. I appreciate your help, and I’ll definitely keep in touch!