My 9-year-old daughter diagnosed almost one month

Parents
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!

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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.

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

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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.

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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!!

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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.

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@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.

2 Likes
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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.

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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!

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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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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.

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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: Diabetes Care Kit for Dolls – americangirl.com

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! FreeStyle Libre Systems (CGM) | Healthcare Providers 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!!

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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!

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Hi Michelle!

Thank you very much for your advice!! We live on Kauai, actually, and we’ll be flying to Kapiolani for endo visits every 3 months. We had a recent visit about a week ago. They did mention piggy-backing with behavior services. I’ll definitely inquire about CLS. While we were there, she actually won an American Girl doll when they held little carnival games for the children there. That got her interested in American Girl. I will certainly share the resource with her. She’ll be excited. Thank you!

Do you live in Hawaii as well? I will definitely keep in touch with you by email. I appreciate your help, and I definitely feel much better as every day I still feel overwhelmed and heartbroken to see her sad. Thank you very much!

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Hi Laura,
Where do you order your stickers for your CGM?

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Thank you very much, Laura. I appreciate it! I hope all is well.

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Hi Greg,

Thank you for reaching out. I know how difficult it is especially the first couple of weeks. Everything including routines, etc. will become easier to manage. In our family, we are all still slowly getting adjusted and still learning about everything. My daughter is ok but still has her emotional outbursts from time to time.

Yes! We’d love to keep in touch. Where we are from, there are several children around her age as well with T1D, but we haven’t met with them yet because she is still not ready. However, she said she is willing to talk with your son on Google Hangouts or Skype, etc. if you are interested. That may help her with coping better. Let me know.

Blessings,

Divina

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My son was diagnosed right before his 9th birthday. he is about to turn 13. We found it helped for him to be really open about his diabetes with friends and at school. He gave a presentation on it. organized a fundraiser with his friends and helped train his friends on helping him with lows and to get his meter ready for him etc… We encouraged him to participate in all his old activities. The only challenge he had was overnights at friends. it took him over a year to be comfortable staying without us. I picked him up many nights at bed time as he was scared he’d have a complication during the night. My son skis competitively, plays football, soccer, basketball and baseball. I think it would definitely help your daughter to meet other kids who are dealing with the same issues. The camp would be great for her. Hopefully she’ll agree to go.

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Thank you so much for sharing. I am looking into a camp coming up next month for my daughter. I am glad that your son agreed to continue his activities and was open with everyone about his T1D as well as teaching them about it. That’s awesome!

That’s my challenge with my daughter. She has only told two close friends and declined attending two of her other friends’ birthday parties as she is uncomfortable about being “different” and not being able to be “normal” like everyone else. No matter what we say or encourage her to do, she will still not want to talk about it.

I will be looking into having her meet others soon and keep encouraging her to return to her activities. She seems to have a mindset that she wants to wait until she is able to use a CGM and insulin pump which is in a month or two. But I feel that she should return to activities soon.

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This weekend sounds good. We live in Hawaii. One of my daughter’s good friends moved to Texas this past summer. :slight_smile:

How is your son doing emotionally?

Google Hangouts is free if you have a Gmail address. I know that Skype charges now and we have not used it recently. We also can do Facetime on iPhone. If you’d like to email me individually, my address is divinadsp20@gmail.com

Thank you!