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The other shoe has dropped, my Madison was DXED at Stanford thru Trial Net

Discussion in 'Parents of Children with Type 1' started by mmgirls, Mar 17, 2014.

  1. mmgirls

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    We are now home and I just sent this email to her school:

    Hi all,

    We are now just back from Stanford Medical and Madison was Diagnosed with Type 1 Diabetes.

    This second nothing will change, we are catching this amazingly early before the classical symptoms and becoming sick from ever rising blood sugars. With that said, I will be in contact with Dr. Eckert's office to get the ball rolling and getting testing supplies for Madison. I will be requesting a RX for a Dexcom CGM ( 24/7 glucose monitor) just like McKenna has. This will allow us to better see what her Blood sugars are doing right now and when we will have to make the change to monitoring Madison at school and when insulin will have to be introduced. (And in the beginning it may just be a 24hr insulin at home and not at school)

    SO for right now, know that we have not hidden anything from Madison, she "knows" that she has been diagnosed, yet she is 6 and obviously is jaded by the normalcy of her sister having Type 1 also. Madison actually is happy to have Type 1, like her sister.

    Please understand that we want to keep this as positive experience as possible, I do not want Madison to feel like she is now broken, disabled , something to be mourned, or the she can not do things or eat things like everyone else. She will fully participate in every way that we can safely make work.

    I ask that you be mindful of your language when speaking to Madison, her classmates and others. Please do not "feel sorry" and give sympathy or tell her that she is Brave. Acknowledge that something has changed, that her body has made a "big mistake", but that we just have to think about things a little bit more so that we can help her body stay healthy. (sometimes healthy is having sugar, sometimes a lot). We are a very "matter of fact" family, Type 1 Diabetes does not give us very much leeway during the day or night, it is a 24/7 condition to not be ignored.

    My hope is that things will still progress slowly, that we can make it till break before we have to implement any changes at school. But as long as things stay status quo we will introduce small changes before year end.
    Like:
    her lunch living in the nurses office
    making sure that she does not toss any of her food - monitoring her food consumption
    monitoring of symptoms at school
    logging of Glucose numbers from CGM at Lunch
    knowing what she had for snack at school so we can figure out the lunch number
    possible small snack in the PM

    This is a lot, I know, and sorry to be impersonal about it at the moment, but as much as our family knew she was at high risk we hoped it would not come to this. I wanted to help you "accept" the Diagnosis on your own terms before seeing Madison, while I can not keep you from being emotional about it in front of a little girl that you care and love, as I said I want this to be as positive experience. This is not easy task! I know that. But if we can take a step back and just know that our adult perspective on the situation comes from the knowledge of the challenges that this diagnosis entails, yet, Madison has never grown up in a house of sympathy towards this. I love my girls so much, and it totally sucks that we gave them genes that make mistakes, but it is what it is and they bring so much joy to those that can accept them for who they are and not their Diagnosis.

    Please let me know if you would like/or need a personal conversation. I will be around and be able to be contacted.



    from an outsider/insider point of view, how did that read to you?
     
  2. DavidN

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    I'm sorry for Madison, you and your family. It sucks. Madison is lucky to have such a caring, educated mom.

    I like your letter. It reads well.

    Edited.
     
    Last edited: Mar 17, 2014
  3. MissMadisonsMom

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    I am so sorry to read about your Madison. My heart is heavy for your family, but know she is in very good hands!
     
  4. mmgirls

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    Gosh, I am not a writer, it is one subject that struggle with everyday(on this forum). I was indeed, crying at that point, so yah it was personal. But, My dd's school truly does love my girls, and I felt like I had to make a point with them.

    We all hate that person that tells our kiddos that it is a terrible disease, and I am sorry that you have been burdened with it or suffer from it , or that you are SOO brave to do what you have to do. It was just my pre-emptive strike against that.

    Its OK, I was asking for opinions. You hit the nail on the head! no need to "edit". And that is exactly what I want to avoid with the people than Madison interacts with, one something is said it can not be taken back. (even on the internet)
     
  5. rgcainmd

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    The impression I've gotten from reading your posts on this Forum and from reading the letter you just wrote to your daughter's school is that you write honestly and from your heart. As such, your words come across as sincere, which I believe is the most important thing to convey with the written word.
     
  6. Cheetah-cub

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    I love your email letter to the school.

    I think it sets a tone that is sensible, positive, and strong. I also think the school would appreciate you convey to them how to react to your child's new diagnose, that they can acknowledge her T1D, but there is no need for everyone to feel sorry for her. Because with proper insulin management, she is still just like the rest of the kids, and can do anything.

    You don't waste anytime, and already off to a good start. Good luck!!
     
  7. andiej

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    I'm so sorry that you are now having to wage this war on both fronts. Whilst it's terrible luck for your little girl to also be diagnosed, she is lucky to have a mum who knows exactly what she is doing from day 1. I hope the change goes as smoothly as it can for you all.
     
  8. Melissata

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    So sorry, expected or not this is tough. I know she is young, but the fact that she has accepted it so well and wants to be like her big sister says a lot about how you have handled things. My daughter was the opposite when she found out. Even so, she never complained and still doesn't to this day. Getting her on a Dexcom right away will take all of the mystery out and show you and the docs what she needs.
     
  9. mocha

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    Hi Madison!

    Welcome to the "T1 siblings who became T1 themselves" club! We may need to shorten the name. It's quite a mouthful!

    I know right now you probably have a lot of emotions running through you about all of this. Just know this: any way you feel about diabetes is the right way to feel about diabetes. If you're happy, then YAY! if you're angry, that's okay. We're here and your family is here to support you. If you're nervous, don't feel bad about it. We've all been nervous, especially when thinking of our parents giving us shots! (Just know that you are not the guinea pig for them to learn. :) ) if you're excited, then jump for joy! And if you feel all these things at once, that's perfectly normal. I feel these things all the time, and I've had diabetes for almost 12 years.

    Right now, things may be chaotic, and sometimes you will even have to be the adult. Sometimes adults are just weird. But it's going to be okay. You have a family and a whole online community here for you. We get the highs and lows. We get the excitement of a new meter or gadget. We get it when you want your mom to run your meter over with the car. We get it.

    You are not alone in this, Madison.

    Goodnluck in training your parents and teachers! You can do it, though!

    Sincerely,
    Kirsten (a T1 who was also diagnosed second)
     
  10. Christopher

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    I guess it depends on the purpose of the note. It seems to be bouncing around between telling them how you want her diabetes handled to more emotional things. To me it is a little long and rambling. I guess for me I would separate out her diabetes management from the other emotional stuff you have stated. Maybe you are going to have a more formal document like a medical plan or a 504. There are some things I would not have included, like that you are not hiding anything from her (kind of hard to do when the child is getting bg checks and shots) and the part about helping the school "accept" her dx on their own terms. Also the part about your guilt for giving her this disease.

    Please understand that I am giving my comments honestly since you asked for feedback and that I do understand it was written when you were in an emotional state.
     
    Last edited: Mar 18, 2014
  11. mmgirls

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    Well, the school has been in on the loop for awhile. While I love my dd school and how they have been able to handle my oldest T1 very well, things are unstable at the school currently. The school nurse that has been there from day 1 is out till we get back from spring break and she will be retiring at the end of the year. When we returned from Christmas break we lost our clinical aide that had been at the school since day one but we have a new one that I feel confident in. This is just a my first communication to them as a group, this is all new to us, none of us have been here before. And as much as I have been open with them, so many questions have come up along the way that I still do not have answers for. I was just trying to give some Idea of whats next, and it is not a formal medical plan or 504 meeting. I bring her to school today.

    Of course there will be more formal talks/paperwork, this is the beginning of a long road that may be similar to her sister but most likely will not be. I work in the schools and I can not tell you the amount of times that kids are sheltered from their diagnosis, I just want everyone to know that we are not taking that road, there will be transparency.

    I find it funny that you find my comment about giving my girls genes that make mistakes, as an admission of feeling guilty. I don't feel guilty that I gave them this. Sure I am sad, and as I said it sucks, sucks big time, I am emotional, but not guilty. I would feel the same way if they were not my biological children.
     
  12. Christopher

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    Understood. That was just the way I read it. I am glad you don't feel guilty as I don't think anyone needs to feel guilty about their children having this illness.
     
  13. missmakaliasmomma

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    I love your letter..

    Having 2 of my own now, I would never want anyone to say " I'm so sorry you have 2 with diabetes" if my son was dxd too.. maybe it's just a me thing but I never want people to feel bad for me and especially my daughter, really because I don't ever want her to feel sorry for herself or think her life isn't as great as others just because she needs insulin.

    So, I won't say I'm so sorry!, I will say best of luck and I'm positive you will all be able to handle this. With your older daughter having D, I do think Madison might have an easier time because like you said, she wants to be like her sister of course. I'm also very glad you caught it early and she didn't get sick :)
     
  14. ecs1516

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    I am so sorry! While it helped knowing how to handle diabetes with my first, it was very hard (emotionally) with the second. Sounds like you have a good handle on it.
    PM me if you ever need anything.
     
  15. mmgirls

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    Right now yes it is easier for her, she has grown up with this all around her. She does finger pokes well now and actually wants to do them to see what her number is. we have always done things in the open in our house, so she has seen plenty of site changes and Dexcom changes and shots. I think that will help a ton with any anxiety she may have when it comes her time to start with all of that.

    She is so different than my oldest, so we will see if it is an easier road.
     
  16. Shopgirl2091

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    I'm sorry you are going through this, my thoughts and prayers are with you and your family.
     
  17. glko

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    I am sorry to hear about your daughter's diagnosis. My ds was dxd on August 15, 2013 through TrialNet as well. He was in the oral insulin/placebo study. His baseline A1c was 7.2%. His 2 hr OGTT was around 400mg/dl I think.
    One word of encouragement or positive note during this very hard time is that because he was diagnosed early, like your daughter, is that we were able to first avoid making it a huge emergency for him and he did not have any symptoms either. By AMs his BGs would be in the low 100s even if he went to bed at over 250mg/dl. And after 7 months he is still enjoying a strong honeymoon period. His basal insulin is 0.05U/hr, the lowest his Ping will go. He rarely goes above 200mg/dl and also rarely gets too low. I hope that with this early diagnosis you will be able to help her adjust and her school adjust to her changing needs with relatively stable glucoses.
    Regarding the idea that you were waiting for the other shoe to drop, I always say that by being in TrialNet we saw the train coming but it didn't make it any easier when we got hit. However, looking back I do think that it helped ds in his adjustment and he has very quickly become adjusted to having diabetes. It has been my dh and I who have struggled much more than he has. Good luck to you and your family.
    Laura
     
  18. KatieSue

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    I think your letter is great. It is just super sucky though that your family has to go through this. But you seem to have a positive attitude and that will definitely help both your girls.
     
  19. Mimi

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    Gosh, I'm sorry to read this. My heart goes out to you. I know how it feels...even when it's "expected."
     
  20. Dave

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    Very sorry to hear this. Sending you warm aloha from our family in Hawaii.
     

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