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New to the Board. Diagnosed today

Discussion in 'Parents of Children with Type 1' started by faithfaery7, May 20, 2014.

  1. faithfaery7

    faithfaery7 Approved members

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    I am a SAHM with three boys. Twins, M and D, age 3. And the baby, G, age 1.

    Today, D was diagnosed with type 1. I am reeling. All the research I am doing has me terribly frightened. I know this is not the end for us, but a very drastic change in direction. But I just have this fear that I am not capable of caring for him. I have depression that I have really been struggling with lately.

    I'm terrified. I've been doing some research on my own and it's so overwhelming. The majority of his care is going to fall to me. I just don't know if this is something I can handle.

    Tomorrow we are going to be spending the day learning how to care for him. I know that most of my questions will be answered then. And I know I can only take this one day at a time. But some of the stuff I have been reading ....

    Minimal 4 finger pricks a day, probably more. Dietary restrictions. Injections. Keeping high sugar foods on us at all times, in case of a dip in blood sugar. Having to tell him that he can no longer eat the things he loves, while his brother can. (We aren't going to let the other boys eat them in front of him.) And he's so little. He's just a baby. He can barely understand when it's time to pick up his toys. And this changes his life. This is something we will have to do every single day for the rest of his life.

    I am so scared. And fighting tears. I know that it could be worse. I know that this is treatable and manageable, and that we should be counting our blessings because of those facts. But I am so terrified that I'm not going to be able to do this.
     
  2. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    Just wanted to wish you good luck today. Hope your team is skilled and knowledgeable about managing a 1 year old.

    Do tell them about your concerns about depression and make sure you don't ignore your own health, easier said than done.

    None of us felt capable of managing Type 1 when our kids were diagnosed, yet here we are, raising busy normal kids who just happen to have lazy pancreatic function :wink: The first year is hard, but we all got through it, you will too.

    Hope you will post with any questions. Lots of experienced voices here. ;-)
     
  3. andiej

    andiej Approved members

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    My heart goes out to you. I can't even begin to imagine what it is like with one so young. My DS was diagnosed 5 months ago, he is 10. Humans have a fight or flight instinct, mothers have a mothering instinct to care for their children. These 2 things combined will ensure you are able to do what is needed to care for your child. Good luck.
     
  4. ksartain

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    Go on and cry. Get out a good, solid, ugly cry and cry long and loud. Get it out of your system. Then gather yourself and go to your meeting and write down everything you can. And then come back here and ask as many questions as you want. You'll be fine. He'll be fine. :)
     
  5. sszyszkiewicz

    sszyszkiewicz Approved members

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    In the end you will win. You are off to a great start.
     
  6. Melissata

    Melissata Approved members

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    You CAN and will do just fine. Your feelings are completely normal, but you have this board as support. The more you learn the more in control you will feel, but you don't have to try to learn it all at once. You really do need to take one day at a time, and care for yourself as well as your kids.
     
  7. jenm999

    jenm999 Approved members

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    You CAN do this and you will be amazing! As my social worker at the hospital said, the only thing they can't prescribe is loving parents and that is hands down the most important thing for your boy. Hang in there, we are here for you (says the flailing mom only 2 months ahead of you!!!).
     
  8. Christopher

    Christopher Approved members

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    Welcome to this site but sorry you have to be here. My first bit of advice is....STOP READING THINGS ONLINE (except here, of course). :) I think it is very easy to get overwhelmed in the begning and Googling things only makes it worse. Take a break from it and try and focus on the basic things you need to do each day to manage his disease.

    As for your other comments, just a few things. There really shouldn't be too many dietary restrictions. The goal is to let him eat his normal diet and correctly match the carbs with the correct amount of insulin. It is challenging but it can be done. He will still be able to eat all the things he loves, he will still go trick or treating, still eat all his Easter candy, etc. He and his brothers will still be able to chow down together on the same foods. You will just need to do a few extra steps for him.

    One last thing. I know kids his age love to take baths. Make sure that you don't give him a bath right after giving him a dose of insulin. The hot water can make the insulin absorb faster and cause his blood sugar to drop.


    There are some great books you can get that will help you in these early days, as well as all the knowledgeable members on this site. But really, it is going to be the day to day lessons you learn over time that will help you the most. Keeping a log of his bg, carbs eaten, insulin given etc. can be very helpful in spotting trends. Get a nutritional scale to help you figure out the amount of carbs in a specific serving size of a food.

    Here are some books you may find useful:

    Understanding Diabetes (aka The Pink Panther book)
    by Dr. Peter Chase of the Barbara Davis Center at the University of Colorado.
    http://www.childrensdiabetesfdn.org/publications.html

    Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin
    by Gary Scheiner, Barry Goldstein
    http://www.amazon.com/Think-Like-Pan.../dp/1569244367

    Sweet Kids: How to Balance Diabetes Control & Good Nutrition with Family Peace
    by Betty Page Brackenridge, MS, RD, CDE & Richard R. Rubin, PhD, CDE. Published by the American Diabetes Association, 2002. 250 pages. Softcover.
    http://www.amazon.com/Sweet-Kids-Bal.../dp/1580401244

    Type 1 Diabetes: A Guide for Children, Adolescents and Young Adults -- and Their Caregivers
    by Ragnar Hanas, M.D. Published by Marlowe & Company, New York,
    http://www.amazon.com/Type-Diabetes-.../dp/1569243964


    Also, here is a thread that has a bunch of information that may help:

    http://forums.childrenwithdiabetes.com/showthread.php?68171-10-Things-Your-Endo-Never-Told-You[/QUOTE]
     
  9. hawkeyegirl

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    Welcome to CWD! I'm sorry you had to join us, but glad that you found us. :) My son was diagnosed at age 3, and my daughter was 8 months old at the time, so I know very well how overwhelmed you are feeling right now. I am not going to lie to you. The first six months are very hard. There is a big learning curve. But a year from now you will look back and be amazed at how far you've come, and how relatively "normal" life feels again.

    The best news that I can tell you is that there is every reason to believe that your son will live a long, healthy, happy life, free of complications. The tools to manage T1 are so much better now than they were even 15-20 years ago.

    For a little while, your team may have your son on somewhat of a restricted diet, while they figure out dosages and while you learn to carb count. This will not last forever! My son eats exactly what other 10 year old boys eat - we just have to give him insulin to cover it. He's played baseball, football, basketball, soccer, tennis, golf...T1 hasn't held him back from anything that he has wanted to do. I always say that his job is to be a normal kid, and my job is to figure out how we make that happen. It can be done. :)

    Chris' list of books in the post above mine is really good. You don't have to read them all in the next week. ;) Choose one (my preference is Think Like a Pancreas) and start reading. You won't understand all of it right away. Read it, put it down, and read it again in another month. Over time it will all start to make sense. This board is a tremendous resource. There are always knowledgeable parents and adult T1s here, who can offer support and great advice.

    Many, many hugs to you. You are not alone.
     
  10. rgcainmd

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    Welcome to our special club. I know it's hard to believe now, but you will be able to do this. Why? Because you are a mother.

    Please know that your son can eat what his brothers eat. People with T1D can eat anything as long as the correct amount of insulin is given. But you will learn about all of this from your diabetes educator. Did diabetes change what my daughter eats? Yes, but not so much in a restrictive way; our entire family is still gradually changing our diet to one that is more healthy for all of us.

    Most important thing you can do: Keep coming back here. This Forum has become a second home to me, and the other parents are like sisters- and brothers-in-arms. Be forewarned that just like sisters and brothers, we sometimes disagree amongst ourselves, and it can get personal and feelings sometimes get hurt. With a biological family, you can't escape the fact that no matter how much you may disagree, you remain family. Our Forum family is likewise bound by biology; our children have T1D and it is not going to go away (not until there is a cure). It has been well worth any rough spots I've encountered to stay here because I have learned volumes more from the other parents than I ever learned in med school, residency, in books, on line, or from my daughter's endocrinology team. I am convinced beyond a doubt that when it comes to T1D, no one can possibly know as much about this disease unless they are living with it 24/7.

    Once you have gotten past the initial diabetes instruction provided by your diabetes educators, keep coming back here. The parents on this Forum truly are the cream of the crop; parents who stick around here are the most intelligent and are the most dedicated to making sure their children continue to receive the absolute best care available. I have come to trust the info I've read on this Forum more than the info I receive from my daughter's endo. No one can get away with posting anything wrong or dangerous here because any one of a large number of parents who know better jump in and correct misinformation in the blink of an eye.

    And do remember to take care of yourself to the best of your ability. I, too, suffer from recurrent depression. I'll be perfectly honest with you: my depression took a major hit once the dust settled somewhat after my daughter's diagnosis. But just like with managing your child's T1D, you will manage your depression by continuing to put one foot in front of the other and seeking whatever help is necessary. I know that you must be in overload mode right now; please know that it absolutely will get better. Never easy, but definitely easier and ultimately doable. Hang in there; we're always here for you.
     
  11. dmb0928

    dmb0928 New Member

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    Things will change, guaranteed, but I'm going to second Christopher's sentiments. Don't restrict. Should the kid dive in and eat a whole chocolate cake by himself? No. But if the kids are having a cookie he can too. Don't separate him from your other children because it will only make him feel isolated as he grows up, and there's no reason he can't watch and eat the same things his siblings do. He needs to learn healthy eating but your other kids should be too, and restricting will only make him want it more. It just takes more finesse to learn how your T1 kid reacts to a cookie and how much to bolus (I'm assuming you're planning to pump?). I had a 4th grade teacher once that did some geography lesson in class where we took a chocolate chip cookie and we were supposed to draw mountains like the way the top of the cookie looked. I'm now 32 and have been T1 since age 8...to this day I still remember how horrible I felt when she took my cookie away and in front of everyone told me I couldn't eat it but everyone else could. I also had a teacher once tell me I couldn't finish a test after coming back from the nurse (with a BG of 45). Fought that one and won. There will be challenges and people you will need to teach along the way.

    When I was diagnosed insulin pumps weren't really much of a thing yet and I was on the horrid Humulin R & N. That stuff required a lot of restriction and not a ton of control. Medical advancements really have come a long way since then (although they still have far to go) and the thing that you have to keep in mind is that your kid's insulin pump can almost (almost, not quite) mimic a pancreas as long as he is testing.

    As others have mentioned, don't believe everything you read, especially online. I have had the unfortunate luck to be on my third autoimmune disorder, having been diagnosed with Rheumatoid Arthritis at age 27 as my latest one. If I believed what I read online between T1, thyroid, and RA, I should be blind, have nerve damage, not be able to walk, and have crippled and twisted joints where my hands look like claws. So in other words, I should probably look like a deranged troll. Instead, while I have some weight to lose based on the year I had to spend on steroids, I'm otherwise pretty damn healthy, my contact prescription hasn't changed in over 6 years, I have an A1C of 6.5, my hands don't look like claws, and most days I feel pretty good with the occasional joint flare up.

    It's overwhelming, yes. I give my mom tons of credit for dealing with me. And that was when the needles were big and scary. But keep in mind that you have doctors that are going to help give you tools you need. Take reading direction from what others have posted here. Don't let the internet psyche you out. It will be a struggle to teach a 3 year old that he needs an infusion set every few days, but in all honestly, they aren't painful and he'll learn he needs it. It will be way better than having to shoot up a few times a day. You may have to fight him a bit to test frequently, but again, it's not all that painful, and the eight to ten times a day I test allows me to know I'm keeping my BGs in check and can snack on things when and how I want. It also allows me to know that I've been dealing with this disease for 24 years and I'm still going strong.
     
  12. Sari

    Sari Approved members

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    Sorry you are here, but know that you are not alone.

    My son was 22 month old at diagnosis. He is now 10. I cried EVERYDAY for 2 weeks (never letting him see). The beginning is hard, I won't lie about that. But it becomes a new normal. When Ross was diagnosed, the Dr specifically said to us, treat him the same as you used to and let him eat what he wants. Ross was put on a pump the day after diagnosis. The pump allows for smaller increments of insulin at a time which, when you are a toddler, is very useful.

    Don't go crazy reading things on the internet. There is a saying on the boards here - Your Diabetes May Vary (YDMV). Every diabetic is different. Some have an easier time then others. Some pick things up faster than others and some just don't get as overwhelmed as others. Talk to your educator and have a good relationship with that person. Ours was a godsend!

    Good luck to you! I think we will all tell you the same thing though - it does get better.
     
  13. sszyszkiewicz

    sszyszkiewicz Approved members

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    I love it when Christopher posts this list! The Pink Panther book is a great first book. Just at the right level to get you started.
     
  14. Snowflake

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    It is a great list.

    I hate to admit to being a little dense, but I found Think Like a Pancreas more helpful after I'd been at it for many months, and re-read it with a better diabetes vocabulary. For a very elementary first book, the "Everything Parents Guide" is also a good place to start, http://www.amazon.com/Everything-Pa...thing+parents+guide+to+children+with+diabetes

    To the OP: I sent you a private message with some thoughts about having a newly diagnosed toddler. Best wishes through these difficult early days!
     
  15. Wren

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    I was 3 months pregnant, and had been in therapy for about a year for depression at diagnosis. I had started antidepressants, but quit them when I became pregnant with the idea I'd go back on them if I needed to. I have found that what I learned in therapy about mindfulness, thinking and behavior helped me deal with D a lot. So I recommend cognitive behavioral therapy and mindfulness. Even if my therapist didn't intuitively understand the ins and outs of D care, when I explained how I felt when, for example, I saw a very low BG, he understood how to help. I learned to be less of a perfectionist. I learned to really ask for what I needed (sleep, for example). I've been out of therapy and free of depression for over a year, even though - no doubt- life is harder now. I would use anti-depressants again if I needed them.

    Many people told me that "oh, my friend's kid has that and it's no big deal now that they know how to count carbs.". Yes, being able to count carbs is necessary, but that comment in no way captures the grief and stress I was feeling. I'm glad I allowed myself to feel that. Yes, I was worried about overwhelming depression setting in, but the sadness and fear you feel is not depression and it's ok - good actually - to feel those feelings.

    And about restricting - we were restricted only the first 24 hours in the hospital as they were treating ketoacidosis. 2 days later, we were all eating burgers and shakes for a birthday. The CDEs not only told us to go, they helped us count the carbs :)
     
  16. faithfaery7

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    I want to thank everyone SO much for all your wonderful messages. It has been a very long day of learning, and my head is spinning. But, honestly, the most encouraged I have felt about my abilities to treat my son was after I read every single one of your comments. I have a feeling that this forum is going to be a godsend for me and my husband in the coming months. Knowing that we are not alone is so huge.

    Right now we're not doing the pump. I think our case manager/dietician/diabetes educator wants to make sure that we're getting a good baseline and the right amount of pre meal dosages (I can't remember the name of the two kinds of insulin off the top of my head). Eventually I would love to do the pump but we have to do it this way right now. Plus, I know some insurances make you wait 6 months before you're eligible to get a pump so that you know how to do it with injections should the pump ever break down.

    I am THRILLED with all we learned about what we can feed him. After our dietician watched him eat breakfast, she upped his carb goal to that of a 4-7 year old instead of a 3 year old, because my boy likes to EAT, lol. The carb counting is not as difficult as I was expecting, and we just completed his first at-home, carb counted meal.

    Right now he screams when he gets injections. It breaks my heart. I can't tell you how many times I've had tears well in my eyes. Please tell me it gets better. How long did it take before your kids didn't mind getting injections? He's fine with getting his blood sugar tested. It's the insulin he hates.

    Tomorrow we go again to learn more about proper foods. I'm so thankful that my husband's work is understanding and allows him to put family first. At least we don't have to worry about his job on top of this. He's also planning to fill out FMLA forms to cover all the appointments D will be having. Do all of you bring your kids once every 3 months to the endo? Or is that just our endo ....

    Thank you all again, for being so welcoming. I was so nervous to post on here. I've been on other message boards before that were so "clique-y", it was impossible to break in. And I knew I needed some kind of support group of people that would understand, not just my local mom's group. So, thank you thank you thank you SO much for being so wonderfully welcoming.

    For the first time since our ped's office said we had to take him to the ER, I actually feel mildly confident about all of this.
     
  17. missmakaliasmomma

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    First, don't do a lot of research. I know this sounds ridiculously stupid but our first endo told us not to go looking because we will find a lot of things that would upset us. I listened and I'm glad we were blissfully unaware for the first couple of years. It probably saved my sanity... I cried when my dd was diagnosed. It's completely ok and normal. You CAN do this. Nobody knows how strong they are until they HAVE to be. I knew almost nothing about t1d, all you typically hear about is the complications with t2.

    Your son CAN eat the same things, he just needs insulin for them.

    And to be completely honest, you'll be doing a lot more than 4 finger pricks, but kids get so used to them. On another honest note, sometimes I feel like someone else could take care of my daughter better and those are the days that diabetes just hits me. Then that feeling goes away because I know how lucky I am to have her, diabetes and all. I'm not perfect at D care and never will be but I try to do all that I can to make things better. Are there days she can't seem to ever get in range? Yes, and most of the time there's no rhyme or reason BUT "tomorrow's another day"

    My daughter was 17 months when she was diagnosed and although she was ahead for her age, she was still a baby too. A lot of people say it's better when they're diagnosed early on because it becomes their way of life. For me, it's hard, because she can't tell when she's low which is a problem.
     
  18. susanlindstrom16

    susanlindstrom16 Approved members

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    I hope you are feeling a little better after your training today! It is incredibly overwhelming at first, but in time it will be integrated into your life and it really won't feel like the huge burden it feels like in the beginning. It will just be part of life. Just take one day at a time and focus on learning about the day to day care your son needs. You will get through it!!
     
  19. quiltinmom

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    It is tough. It is sad. Not many of your friends or family will fully understand your challenges. But you will get through it, if for no other reason than that you have no other choice. Cry, scream, whatever makes you feel better. Then you can get busy with caring for your son. Everything will be okay.

    As for dietary restrictions.........not so much. My Ds eats much like he would non-D. Some parents make drastic changes, but we didn't. It's a personal choice.

    One other lesson I've learned is that when it comes to true medical advice, the internet is not your friend. It shows mostly the extremes of every disease, and 2 million search results gets overwhelming really quick. My advice for the next few months is keep it simple. Follow your dr advice the best you can and try not to read too much until you are ready for it.


    I thought I would NEVER get how to count carbs...but here I am, counting them every day, almost effortlessly sometimes.

    You can do this! It is an adjustment but you will get the hang of it. I have every confidence in you....for what it's worth hearing it from a complete stranger. :)

    Good luck. We are all rooting for you.
     
  20. missmakaliasmomma

    missmakaliasmomma Approved members

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    I think my daughter only cried with shots in the hospital. I really don't even remember lol. She really never had much of an issue with anything we had to do, except when she pumped for the first time and we had manual insertion sets (never again) she freaked out like someone was killing her. It was really upsetting. But now, she's fine with everything she has to do for D.

    The dietician is almost a joke for us, basically I think the issue is I was looking for new foods but we eat remotely healthy so there wasn't much on new stuff to feed her. She could eat like an adult too if we let her lol.

    My daughter goes every 3 months to the dr, it's been over four years already. I think that's standard. Also, we waited I think over 2 years to go for a pump. To me, it wasn't such an easy clear cut decision especially since she didn't mind shots at all (she still prefers them).
     

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