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Newly diagnosed 10 year old son

Discussion in 'Parents of Children with Type 1' started by perrinsmom, Feb 11, 2014.

  1. perrinsmom

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    My son was diagnosed on Jan 27th. We are two weeks into our diagnoses and feeling ok but still having the emotions that leave me wondering if they are normal. For instance, today I was working on Valentines with my younger son and it hit me that my older son will no longer be able to pour out his candy and eat, without me sitting there calculating everything. I know of the alternatives, but this just hit me and reminded me of just how much my life has changed in just two weeks.

    I've found several people who are parents like me, but I've yet to find a board where I can talk to other parents. I'm hoping this is the place. If anyone has any advice for a new T1D mom, please share :eek:

    Thanks so much!
    Kristy
     
  2. Sarah Maddie's Mom

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    Hi and welcome ;-) and yes, this is your tribe.:cwds:

    All I can say for now is that it gets easier. The first year is the hardest. Eventually, all the chores of living with Type 1 will recede and you will find your new life and it will be a good life with holidays and candy and for the most part, normalcy.

    Lots of experience here if you have any questions or need anything from the hospital clarified.
     
  3. sszyszkiewicz

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    Normal?

    Emotions run *deep*. This is your child. This is your family. So yeah.......normal. I have had moments just like you.

    I am a newly minted d-dad just ~2 months after diagnosis. My son is 11.

    For me it is like a grieving thing. A guilt thing (How as a dad did i let this unwanted guest into my house!!!), and a big dose of constant worry/stress.

    Food will never be the same.

    When i was alone in the car I found myself screaming "WHY!!!!!!!" at the top of my lungs over and over. When my son was not around I really let the emotions out.

    I talk to my friends. I tell the diagnosis story and what my reality is like now. Talking helps a lot.

    When I get depressed I read about Biohub, artificial pancreas, Cell pouch, Afrezza, stem cell educator, Viacyte, diabecell, islet sheets. There are smart people working the problem. We are 'lucky" that so much technology has been developed before we entered this nutty place. The CGMs are getting better. The glucose monitors only need the smallest drop. We have the internet.

    So I am sorry this happened to your son and your family, but again to answer your question, yes very normal.
     
  4. andiej

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    Hey. Welcome. I'm relatively new here too. My son is also 10 and was diagnosed on Xmas Eve of all days!! It's hard to say if it has got easier yet for me...somedays it is...somedays it's still upsetting. We have good days and bad days. Has your son started to honeymoon yet? If you need to talk feel free to message me. Andrea.
     
  5. StacyMM

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    Welcome. Having a place to come and talk is great. My son was diagnosed at ten - it is a hard age. You do adapt to a new normal but it takes time. Go easy on yourself and understand that changes are hard but do get easier.
     
  6. Melissata

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    Hi Kristy,
    Welcome and sorry you have to be here. It will get better, but life will never be the same, so it is perfectly normal to grieve that life. I wanted to mentions that you said you know of the alternatives, and thinking that you must be talking about sugar free candy. Stay away from it, because it has almost as many carbs or more, and can cause severe stomach upset. Better to let him have the real thing and dose for it. The only sugar free thing that we use is syrup. I think there is a sticky up top of these forums that list things that people wish that they had known early on. There is a lot to learn, and this is a good place to learn it from others that have been there.
     
  7. perrinsmom

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    Andrea, I'm told we have been in the honeymoon phase but now I'm not sure. Friday after school through Sunday we had great numbers, no corrections needed and now we are back to having to correct. My son keeps reminding me his numbers won't be perfect :)
     
  8. perrinsmom

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    Mary, I didn't look at it that way till you said that, but yes I think I'm starting to grieve the life we had prior to Jan 27th. And, I had a friend who also said don't give to much sugar free stuff as it isn't good. My concern is, I have all the label for the foods we eat or I know how to get an estimation of the foods, but some of the things they are sent home from school don't have the labels and I wouldn't have the foggiest idea how to look them up. In those cases, the candy will be donated. He already weighs out the pros and cons of various foods. We have found a few that he likes that are free. If the weather lightens up then I will get him something that is T1D appropriate for Valentines Day.

    I can't find that sticky you mentioned. Maybe I'm missing it but I looked....

    Thanks :) Kristy
     
  9. perrinsmom

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    Wow ok, you have two months literally to the day, ahead of us.

    A week after his diagnosis I was driving home from buying a bridemaid dress for my best friends wedding, and I lost it. I was worshiping God and the song "I will praise you in this storm" came on, how fitting! And two weeks into this, I still sing that song in my head.

    I don't think until you are that parent, that you can truly understand the pain and guilt that comes over you. Thats why I sought out this group.

    BTW- We are on Lantus and Humalog also.

    Thanks for reaching out to me,
    Kristy
     
  10. sszyszkiewicz

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    Who sings that song? It sounds perfect!

    The one thing that really worried me the first couple of weeks, and really still, is mixing up the Lantus and the Humalog. My son gets 10 units of Lantus at night, and I am paranoid that we will mix up the pens....which I suspect would be "bad". So each night when doing the Lantus, I ask him "Do we have the Lantus pen?" He says "Yes dad"....and he rolls his eyes at me.....but I am like that is an important thing! The Lantus pen is kept in a different place then the Humalog pen because in a rush, I thought that would be an easy mistake to make substituting one for the other.

    I am also amazed how 1 tiny little unit of insulin...it is a mere drop......can make such a difference (my son weighs about 75 pounds).
     
    Last edited: Feb 12, 2014
  11. Christopher

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    Listen to your son.

    I have been doing this for over 6 years and there is always some number out of range, or sometime when I have to give her carbs to bring up a low or give her insulin to bring down a high. It is just the nature of the beast. Once you get past the idea that things need to be "stable" or "perfect" your life will be a lot better.

    One thing that took me awhile to adjust my thinking to was that blood glucose numbers are not "great" or "bad" or "good". They are just numbers. They are either in range or they are out of range. Period.

    When I was new here and got upset with my daughter because she had eaten food and not told me and her number was over 200, a wise woman told me that the only response to your child saying they have a high number is "thank you for checking". (Hi Ellen) :)
     
    Last edited: Feb 12, 2014
  12. Christopher

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    For foods that don't have labels you can use a scale that has a database and weigh the food (Salter 1450 scale if you can find it is a good one). You can also use reference books/websites like Calorie King to help figure out certain foods.

    Not sure what you mean but don't be afraid to give him regular candy and just cover it with the right amount of insulin. The goal is to make diabetes fit into your life, not your life fit into diabetes. It is challenging at times.

    Here is a link to the thread, I also posted this in the other thread that you started:

    http://forums.childrenwithdiabetes....-Your-Endo-Never-Told-You&p=856490#post856490
     
    Last edited: Feb 12, 2014
  13. Melissata

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    If you get a scale and use carb factors you can count carbs in just about anything. Or get a nutritional scale. You can use the search feature here to learn about them.
     
  14. Dave

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    My two cents - While not in the majority, there are those who believe that your honeymoon can be lengthened by restricting carbs and keeping blood sugars normalized. If you have other non-type one kids, it certainly makes sense to limit their carbs.

    So this is good advice in any case.

    This path is surprisingly a road not followed, but if you choose it, you will keep your sons a1c/blood sugars low and avoid the complications of diabetes. I suggest you take a look at Dr. Bernstein stuff.

    Limiting carbs is not popular here, but my son is ten, thriving and his a1c is below 5 - very much like others who follow this routine. This is how he wants it - he understands what high numbers mean to him in the long term. There are added benefits - I must say the stress level is so much lower for us. For example if my son is 75, there is no panic because we dont use industrial quantities of insulin, etc.

    It is work though! You have to find alternatives to cheetos and gogurt! And to make it work the whole family has to eat this way (thats hard for people because carbs are addicting). Once you learn how to cook and eat, it comes quite easy. As it turns out you can make delicious low/no carb pancakes, pizza, cereal, etc etc etc.
     
  15. dianas

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    A couple years ago my pump died in such a way that I couldn't use it and the timing was such that it was going to take almost two days to replace so I had to go back on long acting insulin for a couple of days. I put a rubber band around the Levemir pen just in case I accidentally grabbed it instead of Novolog. I found that really helpful. It didn't interfere with using it all but it was different enough it was immediately obvious if I accidentally grabbed the wrong pen. I also tried keeping it in a different location but I found the rubber band to be much more effective.
     
    Last edited: Feb 12, 2014
  16. Sarah Maddie's Mom

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    It's worth pointing out that your son doesn't use "industrial quantities" of insulin because he's not even been dxd a year and he's not in puberty. (rollie)
     
  17. Christopher

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    A few comments:

    - Simply restricting carbs in a child with Type 1 diabetes will not automatically keep blood sugar "normalized". There are so many other factors that influence bg levels (activity, illness, puberty, menstrual cycle, etc).

    - It doesn't "make sense" to limit carbs in children without type 1 diabetes. Carbs play a vital role in the health and growth of a child.

    - It is not "surprising" that people do not follow this road. It makes perfect sense and it should tell you something that most people do not follow this road.

    - Bernstein is a radical and while some ADULTS may follow his goofy ideas, they are not for children and especially not for children with Type 1 diabetes.

    - Again, this "path" will not automatically guarantee that your child will have low A1c and low blood sugar levels and avoid future complications. To make that kind of statement on a forum like this is not only incorrect but it is irresponsible.

    - Your use of the term "industrial quantities" of insulin is not only ridiculous hyperbole, it is an insult to all the other parents here who are trying their best to manage this disease.

    - In most of your posts you only focus on reducing the amount of insulin your child uses and lowering his A1c at any cost. It is a mistake to be so narrow minded. If you do not look at your child in a holistic way, mind, body, spirit, you risk having major problems down the road.

    I could go on but I honestly don't think you care or will ever change or be open to the ideas of anyone else. And that is fine by me. My sole reason for posting this is not for you, but for the other parents here, especially the newly dx ones, who may read your posts and not put it in the proper perspective.
     
    Last edited: Feb 12, 2014
  18. swellman

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    Seriously ^^^ this ... WTH?
     
  19. Melissata

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    Kristy, sorry it isn't a sticky, it is down the forums a bit, the title is 10 things that the endo didn't tell you, or something to that effect!
     
  20. perrinsmom

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    Ok WOW! Some of these posts sent me spinning, the ones about holistic etc. Others have been so helpful.

    I am just an average mom trying to do whats best for my son. We are trying to get into a routine with our checks and food choices. He can have anything he wants, he just knows he has to get the insulin to balance it.

    I love this forum! Thanks to all of you for reaching out to me and making me know I"m not alone!!!!

    Kristy-Perrins Mom
     
    Last edited: Feb 12, 2014

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