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Our worst week ever...

Discussion in 'Parents of Children with Type 1' started by KylorsMom, Mar 27, 2013.

  1. KylorsMom

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    My story is just like all of yours. My sweet three year old son Kylor had been acting weird, drinking so much that we went from nearly potty trained to diapers. He started loosing weight (although I didn't really notice until a week or two in) and was just not "right" I asked at his daycare if he seemed abnormal, but they said a lot of the kids drink a lot of water. I asked in my family but they all thought he was fine and I was crazy. So last Sunday (the 17th) I got up in the morning (after changing his sheets 5 times the night before) watched him down a bottle of water and then he started puking. I took him into the er more out of frustration than anything else.
    I figured I would take him in, let them tell me I'm crazy, and then go on with life. Well as you know I wasn't crazy, his BG was 600 and before I knew what was happening I was on the phone with my husband telling him our sweet little boy has diabetes. Then came talk of helicopters and a week in the big hospital 2 hours away and diabetes keto acidosis and PICU's..... I would like to say that now we are home and I am thinking clearly and everything is fine. But I can't think straight, my whole mind is so consumed with my sons level and what I'm reading, when our next appt is ect... I seriously almost burned down the kitchen the other day.
    On top of that is the whole daycare issue, right now my husband and I are both working part time at our jobs for a few weeks one of us in the morning the other in the afternoon.... life is just a little bit upside down and backwards. We also have two older non T1 (for now thank God) daughters 11 and 9.
    I was wondering how you all coped, how long does the "fog" last and for those of you with other kids how did you work it out so they still felt included when all the attention is focused on the one?
     
  2. Christopher

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    Welcome but sorry you have to be here.

    What you are describing is completly normal in this situation. You are in the early days and they are very tough. Everyone adapts at a different timeframe. For me, it was weeks before the shock wore off and I felt like I was adjusting. Everyone is different. I would just say take things slow, one day, one meal, one bg reading at a time. Focus on learning the basics, keep a detailed log of bg levels, inslun given, carbs eaten, etc., buy a good nutritional scale, and before you know it, you will start to feel more comfortable managing this illness.
     
  3. Turtle1605

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    Sorry you had to find us. The title of your post says the most important thing. It WAS the worst week ever for you. Fortunately, things do get back to normal eventually and your weeks will only get better from here. Your child being diagnosed with Type 1 Diabetes is very, very hard and what makes it more difficult is that so few people have any understanding of just how hard it is. Others also don't understand that those that experience it do actually go through a true grieving process while at the same time they have to keep their heads about them and go on functioning as if nothing is different after crunching numbers and doing math problems all night. As you know, everything is different.

    My son was diagnosed just after Thanksgiving of 2011. Our Christmas that year was horrific. Oddly enough, my son was fine and felt really good but I was still crying uncontrollably...anywhere my children would not see me (the bathroom, the car, the shower, the closet). I truly felt as though my heart had been cut out with a chainsaw. I was not getting any sleep, couldn't eat, and was traumatized that numbers would take over my entire life. The best thing I did was find this forum. There were so many others that knew exactly how I felt and I didn't even have to apologize for being such a wreck. ;)

    Getting back into a routine was challenging and it took a lot of work to make sure that someone at his school could care for him when I was not there. We finally got down a little system and it runs pretty smoothly. I send in all of his food with all of the carbs listed and how much insulin to dose. He is on a pump now but at diagnosis, I would write down how many units to administer from the pen. Then...the school emailed his levels to me all day for several months. You'll just have to find a system that works for you. :cwds:.

    I know things are very hard for you right now and I know that it is hard to see a light at the end of the tunnel, but please know this is NOT a death sentence and your child will be just fine. You will find over time that you can do all of the things you are learning to do now in your sleep and you will be amazed at how much of these overwhelming tasks will become second nature.

    Do not hesitate to ask people for help. Teach as many people as you can about how to care for your son and work to build a support group. This will take some time, but you can do it. Ask others if they know someone in your town that have children with Type 1 Diabetes. Ask everybody (you may be surprised at some of the people who have Type 1 Diabetes or know quite a bit about it) Introduce yourself to them and keep in touch with them.

    Be easy on yourself. You are only human and you can only do so much. Trust your intuition...obviously it works perfectly...you've already proven that. Don't hesitate to call your endocrinologist. He/She expects you to in the beginning and would probably be more concerned if you didn't.

    Don't forget to laugh. Do whatever it takes to laugh and enjoy each other...it is very healing. Also, don't let this keep you from doing anything you would normally do.
     
  4. shannong

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    I would say that I was very sad and upset for the first 2 months. There was an intense amount of worry and grieving. I would say let yourself grieve. Let yourself cry. Don't hold the sadness inside because it will ultimately just prolong it. Eventually the fog does lift. In the beginning, I pictured all the worst possible things that could happen to my son. But over-time I have realized that while D is sometimes a big nuisance, my son is still a happy boy. You will see your child laugh and grow and have fun and in these moments you will realize, Diabetes can't take these away. Also, be patient with yourself. There is a lot of learning to do and if you are like me, you will feel that you have to learn everything in one day. But really every experience along the way (good and bad) will give you knowledge along the way.
     
  5. Momontherun

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    Welcome to the site. The first few weeks for us was a blur. I know it is clich? but take things a day at a time. I was devastated I don't think I slept for the first week because I was in shock thinking what the heck happen but you do it and it gets better. There is many great resources on this site. Hang in there it gets better.
     
  6. KylorsMom

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    It is so wonderful to hear from others that KNOW how I am feeling. I hate that you all know that because none of our children should have to deal with this but, I'm glad we have each other. It's so true about grieving! My brother in law died last year (a solider at 29) and THAT was just tragic, I watched my sister have to go through the grieving process. I have felt so guilty recognizing some of the same feelings in myself, after all my little one is here, I can hug him every night. At the Childrens hospital reality set in again when we met our "neighbors" and their sweet three year old with lukemia. So I do know that it could be worse, but it is also nice to have permission to grieve for what our kids are going through too. The other night I just broke down after my son woke up crying in the middle of the night because I was checking his bg. It just broke my heart that more often than not over the past week or so he has woken up crying because someone is stabbing him.... it's really not fair. BUT I am so glad there are ways to manage this, as ugly as they can be... yep there I go with the rambling lol... this whole fog thing! I did have to laugh at the irony of my son having a potentially life threatening disease, for which my competency in math is directly related to his survival.... I swore I would NEVER need all that math ugh!:rolleyes:
     
  7. Shopgirl2091

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    I felt exactly the same way you did! I am so sorry you have to go through this. My 4 year old was dx'd on Feb 1st of this year. I felt like I was in a fog for the whole first month. Every time they would change his Humalog dose I would have to have my husband figure out a new chart for me so I would know what range his carbs should be in. My brain was completely non-functioning on the math side. I still have to take it one meal at a time, because if I think too far in the future I get frustrated with our situation. I just want you to know you are definitely not alone! I have been so grateful for others in the same situation who are so supportive and helpful with their own life experience. Hugs :)
     
  8. shannong

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    Your post reminded me about how it would break my heart when my son would get hysterical, crying and begging me not to give him a shot. This lasted a short time and now blood checks and injections are really no big deal. I remember the nurses at the hospital told me most kids adjust quickly to shots and I really didn't believe them at the time, but it is true. I also remember reading about how parents do blood checks and injections in the night and even have their children drink juice without them waking up. I never thought we would get to this place (my son would initially wake up screaming if I tried to blood check him during his sleep), now he sleeps through it all. Hang in there, you will all get to a better place.
     
  9. mom2Hanna

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    Welcome Kim. You made me laugh, I used to say something very similar. My whole family is in the medical field, dad and sister and brother are drs, mom and sister are nurses. I never wanted to do anything medical, yet I'm the one who has the kid with the chronic disease and I always considered myself "math challenged" yet my kids life depended on my math skills. The beauty of the pump is it will do the math for me.

    I cried like everyone else, you mourn the life you had, but then you adjust and diabetes is just part of life. I'm so sorry.
     
  10. greenpalm

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    Me too. We are 18 days from dx with my 6 year old daughter. I'm here too. Best wishes as we navigate this unexpected path.
     
  11. Amy C.

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    My son was dx'd at age 3. He is now 19 and attempting to manage his diabetes on his own (for the most part).

    I was in a fog for a couple of months while I read as much as I could. Once I understood basically how to live with diabetes, the fog cleared and the general care was manageable, but always needed attention to deal with the unexpected.

    This is truly a scary time, but I feel that education is the key to determining your child's patterns and how to fit diabetes into the daily routine.

    I am sorry you are in this situation. There is lots of practical advice on this forum. Please consider carefully what you read -- there is no right way to live with diabetes -- but many are coping with techniques I would have never thought of myself.
     
  12. nanhsot

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    Welcome, for lack of a better word, glad you found us here, it'll help. We all have a story, this is true, and we all can relate to your fear, grief, overwhelming feelings....that is what we all have in common, and just knowing that will help I think.

    The fog, oh gosh it's been 3 years and I still vividly remember the fog, the mind numbing grocery store trips where I compulsively compared carb counts on everything I bought, the mistakes I made, the math, oh the math! The fear that underlined everything back then.

    For me the fog lasted about a month to 6 weeks, but it lifted a little after the first 2 weeks, then slowly receded. It comes back every so often, but you find a way to clear it again. My analogy is that diabetes in the beginning is a loud, discordant clanging noise, you can't make it go away, it scares you, keeps you awake, and generally is not at all harmonious. Then you realize you still hear the noise and it's almost musical, still kind of off key but not so bad to listen to. Pretty soon you realize it's a humming noise in the background, you can never really forget it but it's just sort of there, every so often you hear a bad note but overall it's just something you live with, sometimes you even forget to listen to it, but it never fully goes away. It just hums along in the background.

    I was very worried about my daughter at first, and arranged some special grandma time for her when we were so immersed in my son's needs. Her birthday was just after diagnosis and I was so scared to serve sugary anything. I arranged for my son to have some time with his dad away from home and we had a girls weekend with her friends and we CARBED out, I had a chocolate fountain and carbs carbs carbs!

    Now, now I realize that he can eat all that stuff too, and your life will just get a rhythm that includes diabetes. His sister isn't at all jealous or otherwise deprived, and she's very savvy about diabetes. My kids are teens so it's a different world for me but it's been pretty cool to see how nonchalent SHE is about it all; I trust her to recognize signs of problems and help him through it. Her friends similarly are used to seeing him with needles and testing, while I wouldn't choose it I do think it's brought a certain richness to our lives that has educated those around us.

    One thing to warn you about is that your friends and even family to some extent won't get why you aren't over it pretty quickly. This disease is one that no one can understand except those living it...the fact that it is 24/7 and minute by minute...the fact that you wake up every morning and have fear that he won't...these are things that no one can see because they see your healthy son eating a hamburger and think "oh, look, diabetes is no big deal." They don't know what goes into knowing how to dose for that burger, or the problems that may pop up hours later from the fries. My friends were supportive but then quickly forgot anything was different in my life. This is good, and what should happen. But there was a part of me that needed someone to realize my life had CHANGED. It's hard to describe really. Sometimes the grief comes back and hits me. Hard. So also realize that even once the fog lifts, it may come back, and you can never know when. You'll cry at the oddest times.

    We're all here, we've all been there, this too shall pass. You'll dream in numbers for a while, wake up thinking about blood sugar, fall asleep worrying about everything...but in a few weeks you'll wake up and wonder if you set the coffee pot and you'll fall asleep planning a party. You'll still have nights of poor sleep and worry, but they'll be the exception, not the norm.

    It'll happen. I promise.
     
  13. momoftwingirls

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    So sorry that you are going through this but trust me it gets a little better over time. It only has been 5 weeks since dd dx and I have a lot to learn but I have at least accepted the dx and I don't cry as much. We are still trying to adjust but from what I read it takes a while to find a routine.

    Everybody here are so wonderful always give the best advise and very encouraging. Ask questions here or just vent they will always reply with the most respect and they make you feel comfortable.
    Good luck:)
     
  14. Becky Stevens mom

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    Oh bless your heart dear :cwds: I can still remember it all so well! Its been almost 9 years but I had the same problems. I would read books about type 1 and I would talk about type 1, I would dream about type 1 and would follow my son around and think about his type 1. It did consume me for a few months. I felt comforted doing the reading though. There are some great books about type 1. And talking to others who have kids with type 1 is a really great thing to do. Its almost like sharing a secret with someone when you feel like youll explode if you dont! And then hearing them say "I know what thats like, I know how you feel" and knowing its true. I also journaled for that first year, daily. Id write down my feelings and thoughts. And I wrote myself little reminder notes to keep track of things.

    So, how are things going so far? Are you having any issues that are really troubling you? how is your son? Is he adjusting ok? My son really had a problem with the shots so we started doing some things to help with that. Let me know if your son is nervous about the shots. I'll give you some ideas to try. Come here when youre feeling overwhelmed or if youre on FB, many of us are over there too. I'll start a thread where we can share our FB info
     
  15. sooz

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    I can definitely relate to the math! And now, all these years later I amaze myself sometimes at how fast I can figure things out. :D:p
     
  16. greenpalm

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    May I quote you on this? I'd like to share it with my friends and family.
     
  17. Jennifer126

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    Hello Kim,
    We are just a few months ahead of you with diagnosis..... At first I was in survival mode.... It was very foggy and I was really just going through the motions. For the most part I think I still am when it comes to the diabetes.... other things are starting to feel a little more normal again. I've also hit the weepy grieving stage that I mistakenly thought that maybe I would skip! LOL I thought I would be in that fog until I knew what to do and then it would lift and I would see that I already knew what I was doing. I don't. And I've been dealing with other issues surrounding this as well. It took 2.5 weeks to get him back in daycare and his 2 day a week school still isn't helping.... I go in and check him.
    Night time checks are tough... trying to figure out what foods he will eat let alone what they will do to his BG.... ugh!
    I am feeling positive that I will get there... eventually.....
    Anyway, I am rambling on..... which is part of my fog..... If you ever want to chat you can message me!
     
  18. KylorsMom

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    Reading your posts.... this whole type one battle really creates a family doesn't it? THANK YOU for all the advice, thanks for warning me about the friends and family moving on, I can see that happening. And thanks for reaching out to me, I am sure you all know how much that means at this point.

    Things are going alright. I am getting really good at tackling my little guy for his morning lantus/humolog... and in some ways the changes are becoming normal to us. On the other hand I am scared to death of him not waking up, of sleeping through a low that is too low and not being able to help him. He shies away from hugs because he is afraid of getting poked... and all my hubby and I want to do is stay home and watch his every move. I have been married to my high school sweetheart for 12 years and we have been together since we were 15, in everything we have faced over the years one of us would be stressed or freak out and the other would be calm, we would balance each other out.

    Until this, we are both totally scared. It's comforting to know that he is on the same page as me, and also frightening that this is so bad that he is just as scared as me. I have always been able to bounce back from anything, and am really easy going. At the hospital they all kept saying how great hubby and I were doing, that we weren't freaking out, and were jumping right in. I know they meant to be encouraging but the whole time I was freaking out on the inside but just couldn't let my kid see it.

    And I have have been floored by just how much this has effected me, how I am not going to just get over it. It really helps to be able to talk to you all about it :)
     
  19. kirsteng

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    Hi Kim,

    I'm also just a few months in myself (d/x Dec. 23). I was amazed reading all the previous posts on this thread.. the wisdom, the clarity, the support. This is an amazing community of parents/people with T1!

    For me personally, I was a jump-in-and-get-to-it type... I had to DO something to deal with the fear and constant anxiety. So I read... and read and read. Googled, bought books, joined forums, asked questions. I feel like I've learned a LOT in the past 3 months, and am feeling so much more positive about dealing with this disease now that I feel like I 'get it'. I really haven't cried much.. maybe it's still coming. lol But I definitely have the sadness, grief for our old way of life, grief for the freedom my little guy has lost. You just get used to it after awhile I think.

    I think another key factor is to make sure that your husband (if you're married) is involved in the care.. part of the nighttime checks, bg checks, shots etc. I think when you're a team dealing with diabetes, it's not so overwhelming. Support each other and deal with it together.

    As far as the siblings go, we're still adjusting with them. In a strange way I think it's helped our eldest son, who until his little brother's diagnosis, had always commanded the most attention in our house (and not in a good way). ;) He's stepped up now that he knows that we have important things to think about with Grady, has matured, is more helpful. Our middle child though (girl aged 8), I think is needier. She's always been the 'easy' child, but I think she's feeling the pinch of getting the least attention nowadays. We have explained to her that it doesn't mean we love her any less, it's just that we only have so much time. I try to make time for her every couple of weeks though to have 'special time'.. usually I'll take her out for a doughnut and hot chocolate and just catch up and chat without having to worry about carbs. ;) I do think she understands, but she is acting out a bit more and it's certainly something we struggle with/feel guilty about. Again, I think we'll all have to find our new footing in time.

    So... welcome.. so sorry we have another little soul here with T1.. but if we all put our heads together I know we'll come up with the best care for our little ones.
     
  20. nanhsot

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    Of course.
     

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