Our 5 year old daughter has just been diagnosed with type 1, insulin dependant diabetes. She was in a children's hospital all week. She was sick thursday into friday of last week. She was throwing up and not keeping anything down. We called the doctor and naturally thought she just had a stomach bug, even though her two younger siblings were not affected. She stopped throwing up friday afternoon and I went to work. (I work 3pm til 2am.) Although I had a feeling I should have left work and gone home, my husband had told me that she was fine and had finally fallen asleep. So I stayed at work and ran to the store for an extra quick father's day present when I got out. I got home at 3am. At that time, I found our daughter unresponsive. She couldn't walk, couldn't stand, couldn't speak-just sounds, her eyes were rolled in the back of her head and she was ice cold. I took her to the er, where they rushed her right in and immediately checked her sugar. It was off the charts. We later came to find her first sugar was 1255. She was in diabetic shock and slipping in and out of a coma. She was lifeflighted to Janet Weis Children's Hospital and put in the pediatric icu. There, she stayed in her coma-state for two days, received insulin through an iv, was monitored closely for brain swelling, which would put her into a coma she may never have woken up from and finally became alert on the third day. She was moved to the normal pediatric floor where she was poked, prodded and pricked every three hours. She wouldn't talk to anyone, not even me, wouldn't eat, wouldn't smile, just a blank stare. She was miserable like I've never seen her. It was heartbreaking. She is normally a talkative, fun-loving, lovey little girl. But there was no sign of that in her. She didn't take checking her sugar or taking her insulin shots well at all. She'd cry and sometimes say "no more". She came home finally wednesday afternoon. She has started to become more herself. She's playing, laughing, smiling, joking, talking a little more, eating bits at a time. She is kind of irritable, especially with her 4 year old brother. The doctors said that's normal while her body adjusts to her sugar being at a normal level. Sometimes she is okay with checking her sugar. She still isn't great with her insulin shots. We have made a point to explain to her that we need to check her sugar to make sure she's okay and that we need to give her insulin shots so she doesn't get sick again. We tell her every time. She says she understands. She has always been mature for her age and very intelligent. I let her help get her monitor ready to check her sugar and show her what the number is. She helps write it in her log book. I let her pick where she prefers to get her shots. Bit by bit she seems to be understanding more but she still isn't okay when it comes to actually doing it. I keep being told that kids adapt quickly but it breaks my heart to have to be the reason she cries. I haven't been taking the whole situation well. I've been very upset and cry at night when the kids are asleep. I don't let her see that I'm upset. I've been thinking, what if she isn't the same as she was before? It would break my heart for my little girl to have lost a part of herself through this. She'll be starting kindergarten in the fall and I was anxious before this, but I'm extremely unsettled now. She's shy anyway and I don't want her to feel different than any other child or feel embarrassed that she'll have to go to the nurse and get her sugar checked and get her insulin shot. She doesn't need to be on any special diet. Just counting the carbs she eats and then giving her the correct insulin dose to account for those carbs. Her sugars have been good so far at home and we're quickly learning to count the carbs and dosing the insulin. We don't want to get it wrong. Am I wrong for being so upset? I was protective of our children before but she is our first born. I feel lost. Will she really adapt and be her normal self again? I just really want her to be okay and I want for things to be normal again (or our new normal) for our family, especially her and myself, as we've been affected the hardest. My husband is able to look at it logically and seperate the emotion. I can't do that. When she's hurt or unhappy, I feel it too.
Hi there. I don't have experience with this but my cousins son was diagnosed around 3years old. He's now a teen and doing great.
I googled and found this site. Perhaps it will help. http://www.childrenwithdiabetes.com/
Try to see if there are support groups for Diabetic children.... Google search online for your area/information. And ask the hospital. I am sure, they must know of some.
It is important for the child to feel, that they are not alone in this... and that there are other children with it too... and to even meet them and/or see them and see... how their lives are still enjoyable and 'normal.'
Support Groups, can REALLY help. For both child and the parents. It helps with coping... too.
I am speechless... and wish you and your daughter the best.
I almost cried reading this.
My late Dad had Type 2, Diabetes.
Your child, is a child.
And she WILL need, at least one of her parents... to be her soft place to fall.... and a shoulder to cry on.
Please.... a child cannot be "strong" all the time, just because they may be regarded as smart or mature for their age.
My Dad, being an adult... had a hard time with it too. And he was an adult.
Give your daughter... space, emotionally, to just be and let it out or whatever she needs to express.
Since your Husband is the "logical" one and can separate it from emotion... then I highly suggest, that you be the one that your daughter can feel emotionally, with, and soft with.
She needs, a balance in her parents. So she does not have to internalize everything... and then shut down.
Oh mom, what a frightening story!!!! So sorry you and little one had to go through all that! I am so glad she pulled through as well as she has!!!! IMO, I think it will take a little time but she will adjust. Kids are just that way. It's always us adults that have the hardest time. I'm still adjusting to my son being an epileptic. We look at our kids' angelic faces and it hurts our hearts knowing that they have something we can't fix. I think it will get easier. Notice I didn't guarantee anything. I can tell you that your daughter is the same sweet thing on the inside, and remind her that she is special, not different. Prayers and hugs to you!!!
Very scary, but you can do this and so can she. Diabetes is very popular in America. It's something you can't see, but you will soon realize that you and your daughter are not alone.
My BIL died at age 12 from a diabetic coma. His parents thought he had the flu, they didnt take him to the doctor, they didnt know he was diabetic, he died right there in his bed at the tender age of 12. They would have given anything to have him alive again, insulin shots and all if they could have done it over again.
I have a good friend whose daughter was diagnosed at age 8, she had a rough time for the first year, but it became second nature and daughter learned to take care of herself.
It's new right now, but soon everything will be okay. Hang in there! Educate yourself. Your daughter is not different, she is part of the norm. The sooner you wrap your minds around that the easier dealing with the routine will become.
Oh sweetie, I am so sorry you are going through this, but there is a whole, full, happy life waiting for your daughter!!!!! My husband is Type I. His story was very similar to yours. His pediatrician thought he had a stomach bug and told his mother to take him home amd feed him JELLO. His sugar was over 1600 when he finally got to a hospital. At the time he was in the NE Journal of Medicine for having such a high blood sugar and surviving. He is proud of that now :) My husband is 36. He has 2 college degrees, was a police officer for 5 years, and now has a successful career working on high-end insurance litigation. His vision is 20/10 and his kidney function is not compromised. We have two children who are both our biological children. He was diagnosed at 8 years old. Yes, it can be hard, and it is something that has had an impact on his life, something he deals with every day. But it does NOT mean that your daughter will have to substantially change whatever path she may have been on. Medical advances are being made constantly. Things like pumps, glucose monitors that use tears or are strapped to the wrist, and other technological advances are making all of the pokes much less. Additionally, there are procedures like eyelet transplants that offer promise for future solutions. My husband went to a camp specifically for Type I kids that I know he highly recommends. I can get the info from him, or I am sure you can find something similar through JDRF.
PM me with any questions, I will answer or have DH answer anything we can. Most importantly, just know that she WILL adapt and she WILL thrive and it WILL get easier.
Giant hugs!!!!!!!!!!
Dear H., I want you to know how sorry I am that your family is going through this. My daughter was diagnosed at age 19 months and my son was diagnosed at age 6. Even though it's been a few years (daughter is 5 and son is now 8) I still grieve over their diagnoses. It's still hard and while they DO adjust, it's not an easy road but there is SO much hope! Your daughter will be able to live an excellent and full life even with Type 1 diabetes.
I do want to clear something up, there is NO treatment for Type 1 diabetes that doesn't include an injection. Insulin must be administered through syringe or by insulin pump. Insulin pumps are great for active kids and Type 1 cannot be controlled by meds and diet, but must be treated with insulin. My kids started out on shots and now have pumps from Medtronic.
It WILL get better! It's okay to cry and to not take it well! People (not talking about mamapedia, but people in your "real" life) will give you crappy, stupid advice and tell you horrible stories of diabetes but don't listen to them! Arm yourself with education from your endocrinologist, get into a support group and show Type 1 that it won't steal any part of your daughter's life.
I have so much more to say to you, H., and no time right this minute, but I want you to know that you are not alone and EVREYTHING you are feeling right now is valid. Please don't expect too much of yourself right now. It will be okay! My kids have tons of friends and they are not shy or embarassed about their pumps or shots at all! I worried, just like you that it would really be hard on them, but they have adapted really well.
Please feel free to private message me! I would be happy to talk to you on the phone as well if you need a sounding board.
My husband has had Type 1 diabetes since he was 3 years old and he is one of the healthiest people I know and owns 3 businesses. A boy in our town has Type 1 diabetes and has competed on the state level in tennis, basketball and football. The sky is the limit for our kids and there are HARD days, but the good days are well worth the pain.
HUGS!!!!!
We all hurt so much for our children and I know so many would gladly take the pain and make it our own. Brave mama with a brave daughter. Try not to worry so much. There are children lined up for meds in schools, and they often love stepping out of the classroom feeling important not to mention as they get older they miss class! And I do not know if this will cheer you up but a teacher I know has diabetes, checks in sugar during class and is expecting a baby and she is just beautiful. She sits and eats her snacks and takes wonderful care of herself. Of course you are not wrong for being so upset. This is YOUR BABY. and she sounds like she is very normal already. Aside from the diabetes, hospitals are just plain scarey icky places and there's no place like home. As far as your husband goes, well, he's a man. How do they do that? hug
Yes, she will adapt. She will be okay. It's a bumpy road, though. I haven't been through this (although my husband is Type 2), but a dear friend (whose husband is also Type 1) went through this with one of their sons - and now that son is going through it with one of his little daughters.
Do you know any mothers near you who can relate to what you're going through - is there any kind of support group where you live? Perhaps I can connect you with my friend; at least I will ask her, if you like (PM me if you do).
My daughter, who taught elementary school until just recently, had several students over the years who had to check their sugar and get their shots during the day. When the other kids in the class understood why, they were very supportive. Way back when I was in college I had an acquaintance who was diagnosed as diabetic when she showed up for her ho-hum college physical! She learned fast to be very open about what she had to do and why, and didn't let her condition manage her life because she managed her condition.
Here is something for you to think about. There are problems in life - things that you need to solve; and then there are facts of life, things that you can't "fix" but have to work with. Finding out that you or your child is, say, nearsighted is a problem, and you fix it. Diabetes comes under the "fact of life" heading, rather than a problem to solve and check off the list.
Head for "new normal" even though there are a lot of ups and downs. Ask about resources for diabetic children in your area. Ask about resources for the parents of diabetic children, too.
I'm praying for your family, H..
You have to give yourself (and her) some more time. You are "greiving" the life you and your daughter had and are slowing coming to understand this new life. Give yourself some time. This is a lot to process.
Your daughter is only 5 years old. To say that she's been blindsided and had the wind knocked out of her seems like such an understatement. Give her some time. I don't mean to sound harsh, but she will get used to it because she doesn't have a choice. Give her permission to not be too happy about this. It will begin to be normal for her in time. Whether consciously or not, she will eventually realize that it's easier to just go with it than to get upset all the time.
I would stop talking to her about it each time you have to give her insulin shots. She might be mature and intelligent, but the shots still hurt and that's all she cares about right now. This is effecting you emotionally. Give her some space to let her deal with it emotionally.
You said your husband is responding very logically. That's a fairly normal reaction for a guy. My husband and I can be very logical at times and very emotional at times. Thankfully we usually take turns (the not intentionally). It's helpful to have a logical person around to make sure everything that needs to happen does. It's also important to have an emotional person around because kids are just kids and need to have their feelings validated.
My point is, everything you're feeling and thinking is completely normal. It's going to take time for your family to adjust, but you will!
Your baby girl might be 5 years old, but she's still your baby girl. She's going to be just fine!
Of course you're extremely upset . . . any sane parent would be.
My dad was diagnosed Type 1 at 18. My nephew only made it to age 6. There is a great life to be had after the diagnosis. My dad is a very successful business person and my nephew manages most of his diabetes needs himself (he's 12 going on 13). Both of them have the pump so that's something to consider down the road.
You're very, very lucky you didn't lose her. But that doesn't take away the shock of what's happened. It will get better but it will take some time.
Hang in there. <3
Count your blessings that you got her help when you did. Do not feel guilty that you did not realize how serious she was, but be thankful you acted when you did. Remember you are not alone. Diabetes is very real, and much more common than many people understand. There are many support groups and resources available to you, which I am sure your Doctors have made you aware of. JDRF is amazing. My sister has a son with Type 1. They tireless fundraise for the organization with participaton on bike rides such as in Death Valley, or Galas close to home. This may take her a while to adjust to, but it is something you will all have to live with and come to terms with. It is okay to cry, question "why us?" and even be angry at this disease. It is a normal response. Under normal circumstances we continually worry about our children, so Diabetes is going to make you even more vigilant. She can definitely lead a normal life and do everything she wants to do once she gets her numbers under control. There are automatic pumps she will eventually be able to use, and no one will be the wiser. Be as strong as you can for your family but don't hesitate to ask for help and seek support for her, yourself and the family. See if there are children around her age close by, that she might be able to meet so she realizes she isn't different or the only one. You dont have to go through this alone. I wish you the best.
Do your research. It helps. It's been a while since I've been in the loop regarding diabetes. There are treatments that don't include injections. I also know they make such tiny tiny needles now, as rotten as it is for your little one, it's SO much easier then it was years ago. I know my half-sister is on a pump, I'm not sure how this would work for an active child, but my father is on medication and diet, this may be easier on your daughter if it's an option. You'll still need to check her blood, but as I said they make such tiny monitors and needles, it's not nearly as bad as it was when my sister was growing up.
Take a breath and try to view this like taking a bath or brushing your teeth. Just something that needs to be done and you can move on. Play it down like it's no big deal and she'll be fine.
I've never been through a situation like this, so I can't speak to the specifics. But I just wanted to say it sounds like you are doing a great job. I think I would have a very similar reaction to yours if it was my child. I also think her reaction is normal. She is probably mad & upset about being sick & in her mind she is probably still sick b/c she needs the shots. I know my almost 5 year old hates going to the doctor & getting shots. I couldn't imagine how miserable he'd be if he had to get shots multiple times a day.
I remember when I was in elementary school my best friend was diagnosed with diabetes. I felt so bad for her (b/c she wasn't allowed to eat ice cream any more) and because she had to get shots everyday. She too had some trouble adjusting. But very quickly every thing was back to normal & we never treated her any differently.
My only suggestion is that you share your feelings with your daughter. Sit her down & tell her that you are sad, mad, upset about her having diabetes & that if you could take it away from her, you would. Tell her the best you can do is watch her diet & check her sugar & give her shots. That these things will prevent her from going to the hospital again. That the shots will protect her. Also, ask her to share how she feels. Do the shots hurt or are they just annoying? How does she feel about checking her sugar? How does she feel about her trip to the hospital? Let her air out all her feelings. Even if you've done it before, do it again until she is more annoyed by your questions than the shots.
Lastly, one month after her hospital visit I would throw a little party (just for the 4 of you). Celebrate 1 month hospital free. Make a big deal over how brave she has been with the shots. Give her a present for being so brave. It doesn't have to be expensive (my kids love $5 lego packs), just something to make her feel special & positive. (You might want to give your other child a gift as well, since they are not getting all the specialized attention your daughter is getting every day). Or you could take the whole family some place special & say its because your daughter "earned" it for being so good with her shots. (This is not something I would do every month, but you could do it randomly. Especially, if it's trips you take places anyway, like the zoo).
Good luck.
A couple of people mentioned JDRF (Juvenile Diabetes Research Foundation) but here is how you reach that organization:
Please don't be put off by the fact that SO much of the focus at this web site is on fundraising for a cure. Frankly right now you need to be focused on your own child and how your family will cope -- not with "let's raise funds for research." Go to the tab marked "Life with Diabetes" on the home page for JDRF and you will find resources to help you and your daughter.
Another place to find help is the American Diabetes Association:
www.diabetes. org (be sure you type .org and NOT .com, which takes you to a pharmaceutical firm). This site also has a "Life with Diabetes" tab wher you can go.
Please know that you and your family are NOT alone. Get in touch with these organizations. Also, be sure to check with your child's doctors and say you want to find a support group in your local area for parents of children with Type 1 diabetes. Such a group would be a huge, huge help to you and your husband. You would meet other parents who have been through exactly what you are going through now, and the best support and advice comes from those who have been there. Please make the effort to find such a group if you possibly can. You also may be able to find online support groups of parents of kids with Type 1.
She WILL "adapt and be her normal self again" as you put it. Today, diabetics have much better and more "normal" lives than they did even a few years ago. If she must have this condition, she at least has it at a time when medicine can monitor her so much better than ever before, and can do so much more for her.
Also, you are very wise to keep you own upset feelings hidden from her. She would get the message, if you broke down in front of her, that there is something flawed about her, and that is not what she needs to hear. You will do fine with this eventually but please -- reach out for help, be assertive with doctors about giving you information, seek out help from nutritionists, the associations, etc. There is advice out there but you will have to go and get it for her sake.
And since you have other kids -- I assume the doctors have already told you what signs to watch for in your other children, right? You do need to watch them for Type 1 as well. It does run in families sometimes -- my husband's mother and her sister are both Type 1 and have been for about 60 years, so rest assured, that if they can cope and live long lives with Type 1 over years when treatment was not always great, your child will have an even better opportunity for a full and normal life, living in a time when treatment is much more advanced.
Wow, I'm sorry you are going through this. I know its hard but it will get better and she will thrive. I will be honest and tell you its a life style adjustment but she will thrive and do great. I am a nursing student and know some (well much more than most) about diabetes and it sounds to me like you are doing everything perfectly. I can tell you from a personal experience that my baby cousin was diagnosed w/type 1 when he was 3 and he know has a masters in enginering and designs jets for a living.
I am so glad you were able to get her the docs that she needed to have to diagnose her so quickly and so well.
I am thankful she came through this. I cannot imagine how your heart has suffered along with her.
This will become a way of life for her eventually, she will get used to it. I can't remember if this is something she will have this severe her entire life or if it is something that will eventually even out and be less serious. I have only had one friend who had a child that dealt with this.
It was so hard for the parents to take a weekend off and do some alone time. They were finally able to do so after they got all their family and friends on board. They all learned all the signs and what to do in case she had a problem. My friend would get to the hotel room and go to the bathroom and take the longest bubble bath. She was not to be disturbed. After she got done with that she would go to bed and sleep for hours and hours. Her body would just check out for a while. When she woke up she was more refreshed and then they could start their vacation.
They worked hard to be able to do this every few months so their health would not suffer. It was their time to take care of themselves. They did have more children and none of the others had any health issues this severe. They did support groups, fund raising for Juvenile Diabetes, and devoted the rest of their time to educating the schools and others in their daughters life so they would all be totally aware of signs and other things.
I am thankful she is on a normal diet. This is so good for her. My friend that has had insulin resistant diabetes all her life ate and drank foods full of artificial sweeteners and fat substitutes. She nearly died from the damage these foods did to her body.
Her newest specialist took her off all artificial foods and told her to eat good natural foods. She eats only real sugared foods, real butter, real milk, etc....she counts carbs too. She is the healthiest she has ever been in her life. She is off oxygen all the time, no longer carrying a tank where ever she goes, and has not had pneumonia in a couple of years. She had it several times per year for many years.
She has also had some other major medical issues. She had one of those Teflon Bladder Slings put in and her body rejected it. She had a ball of gangrene around it. She nearly died since her body could not fight it off due to the diabetes. She carries that gangrene tag in her blood all the time now. If she gets even a small cut it can get gangrene almost immediately. She checks her body daily for skin breaks and other injuries to keep herself healthy. She still has all her natural body parts, thank goodness.
I pray your daughter will have good health throughout her childhood so that she only has this trial she has to live with. God bless your family.
