Blindsided...twice


(Ryan) #1

A little over a week ago my 5 yo daughter was diagnosed with type 1. Needless to say, I was completely floored. It seemed overnight our world was completely turned upside down. I don’t know of a worse feeling than having to physically restrain a terrified daughter multiple times a day to get her insulin shots. I’m the one person who she should be able to count on for protection and comfort. I know I have to do it for her sake, but it absolute kills me every time. I have to excuse myself for 5-10 min afterward because I don’t want her to see me breakdown in front of her.

Fast forward a week, and my 3 yo son started to display similar symptoms: frequent uriniation, extreme thirst, etc. I was hoping we were being neurotic having just gone through this but we decided to test his blood sugar and ketones.?Sure enough, they were both off the charts. So here we are back in the children’s hospital just a week later. It’s a nightmare I can’t seem to wake up from. I feel completely deflated, defeated, angry, and a million other emotions right now.

I’m not really sure what I’m looking for on this forum, but I just needed to let some things out and I figured it’s best to do so with people who understand what it’s like to go through this.

During a time when we should be worrying about spelling tests, putting up the xmas tree, and writing letters to Santa, our days are filled with carb counting, needles, and tears (my kids and myself).

Sorry for the long ramble, but thanks in advance for listening


(Megan) #2

Im so sorry to hear about your kids. I cant even imagine what you must be going though. I was diagnosed almost 2 months ago at age 15. I know were in very different positions but I hope you know it will get easier. Eventually it will become a routine and just another part of daily life. Its very scary especially when it happens completely out of the blue, but everything will turn out okay, its just going to take some time. This website is a great place to rant and ask questions/ for advice. Ill be thinking about you and your family in this tough time!


(Dennis J. Dacey, PwD) #3

Welcome Ryan, and Jenn too @ryanandjenn .

It is tough right now for both of you and your two children also. You are welcome here, sharing your concerns, asking questions and asking anything and do feel free to share your frustrations, upset and anger. This is a caring and welcome place - and many of the visitors here are willing to support you and your family.

I’ve had diabetes for over 60 years but thankfully none of our children or grandchildren have followed in my TypeOne footsteps. The closest I’ve come to what you are experiencing in caring for children is our very premature granddaughter [22 weeks] who lived with us and was born without an immune system and with several other deficiencies. I learned how to administer antibiotics by IV four times a day and how to comfort a child who needed everything.

You and your family will be going through much, you will learn how to care for each other [your kids will try to comfort you] and you may learn that TypeOne Diabetes can be managed well - there are now many really great insulins and devices to help you along the way.

My advice, stay positive, yes you CAN do it. Visit here often, ask questions and don’t be afraid to cry on our shoulders - we are here for one another.


(joe) #4

@ryanandjenn,

in this time of upheaval, there wont be any words that will make you feel better. for the next year or so, this will be what seems like a very long time of abrupt change, and there’s a language you will have to learn. I can’t tell you it gets easier - but I can tell you that by the year’s end, you’ll be an expert and develop a new set of senses around blood sugar.

in the coming years, this will become the new routine.

I think it’s OK that you excuse yourself if you are feeling grief about the new normal. I was a bit older at diagnosis and my parent’s fear is what affected me more than the needles.

you don’t have an easy road ahead, but if you have your kids’ back, you’ll be a strong influence on both the medical and emotional stuff to come. Diabetes forces you to be the primary medical provider, as the hourly changes in blood sugar will require you to make decisions. I urge you to develop a good relationship with your childrens CDE (Certified Diabetes Educator) because they will be most helpful this year…

not to make light of your situation, but less than 4 generations ago, type 1 was a fatal diagnosis and disease. if you are thinking about this and that… this is much better than that.

write those letters to santa, learn about insulin. in my 38 years of experience - if you learn how to use insulin there’s not much difference in having type 1 as not having it, it’s more like a manual transmission versus an automatic one.

please use the forum, there are a thousand years of experience here. type 1 can be isolating because there really aren’t that many of us, but you are not alone.

your daughter can help take care of your son in more ways than meets the eye, it might be just the thing that helps her.

please keep talking about it and take care of yourself as well. we’re rooting for you.

Joe


(NickADOC) #5

Ryan,
Unfortunately, this is becoming more and more of a problem with very young children being diagnosed earlier and earlier. I really do understand your problem.
Back in 1983, I was 18, I was diagnosed two days before Christmas, I was the classic ‘Juvenile’ diabetes subject. Now that term doesn’t really apply as patients of type 1 get younger and younger.
It will get easier, at this time all the emotions you’re feeling are perfectly normal and with it being Christmas this will be heightened, just as it was for my family back then.

But, you should notice, and so should your children, that they feel better once they have their ‘medicine’. Perhaps ‘selling’ that part of the process to them might help them see past the initial discomfort.

I was diagnosed back in the UK and there, we had specially trained nurses who you could go and speak to about any issue regarding the disease, they also always had a dietician who helped to plan the Carb Counts. Don’t be afraid to reach out to the local JDRF chapter and to your Endocrinology specialists for any advice/support. I’ve always found these people to be incredibly patient and understanding. They may also be able to put you in touch with other families who have been through the same experience?

Finally, don’t deny your children treats, Diabetic speciality foods are useless. As long as it can be counted within the dietary plan then it should be OK.

I am 52 now and there will be good and bad days but once your children are comfortable with the process and recognise the necessity they will mostly be good, and once they get a little older your specialist may recommend a pump, whilst I personally don’t favour them they can take a lot of the worry away with regard to regular dosage.

I hope you and your family do manage to have a very Happy Christmas and I wish you all the very best of luck in this ‘adventure’.


(Nichole Acosta) #6

Wow! I’m glad you reached out on this forum…I’m a T1D and I know first hand how scary diagnosis can be for you and your kids. Have you checked out jumohealth.com ? Jumo provides comic books and other resources for kids and parents to better understand how to deal with diagnosis and manage it in the years ahead. I hope this removes the blinders.


(Wendy Spencer) #7

I am so sorry you have so much to worry about at the moment. My daughter was diagnosed on the 22 December 2014 - so Christmas was not a very happy time for us. She was in intensive care, but came home for an hour to celebrate. I was just so grateful she was alive, that nothing else mattered. It is good to feel all the things you are feeling, and to tell other people about what your new reality is. You have many reasons to feel angry, defeated and deflated (not that feelings need any reasons…) Take care of yourself - diabetes is relentless on parents’ energy levels. I wish you and your family all the best.


(vdenerson) #8

I am so sorry for your situation. Just know one thing: It does get better and easier. Right now I know your world feels like it has blown up. I can relate. I too have two type One children. My eldest son was first to be diagnosed and eight months later my daughter. In the hospital I was told that mom’s take it the hardest-I believe we do. To make things worse I let it get the worst of me, I lost weight, and became despondent, my neighbor lady friends even had an intervention of sorts for me. As time goes on you will all become well versed in carbs and counting. My two have never denied themselves anything, if they want dessert after a meal they have it,they have it, they have to give themselves a shot anyway. As far as snacking and candy, same, its a choice to have it or not they know they have to cover it. All that being said we as a family have become very healthy eaters. Diabetes changed all our eating habits for the better. There really isn’t a silver lining except for that. Both my kids use pens to administer shots, neither wanted to be tethered to a devise and use a pump. My daughter however is using a CGM (continuous glucose monitor) which allows me to track her blood sugar levels in real time by the sharing app. that comes with it. Its a great help at night so I know if her blood sugar is going low while she sleeps. It also helps in not having to check her numbers quite as often as it does it every 5 minutes. I realize much of this comes with time and maturation of your kids but it will happen. Keeping a positive attitude and really, the two of them going through it together really helps a lot, it’s the new normal in your household. Our children are resilient, they have diabetes, not a deadly form of cancer, they have a disease that is controllable, and with a bit more work, their lives are just as normal as any other child. I hope this helps.


(Kelsie) #9

I am a T1D and new to this forum. I read your story and wanted to let you know that we are all in this together! There are so many products now available that can help your son and daughter and you as well in learning about diabetes. I have had diabetes for over 10 years and we all have each other’s back in this. I know some companies have special stuffed animals for kids and a storybook that goes along with the stuffed animal of how to take shots and you can practice on the stuffed animal. Also when I was diagnosed my parents had to take a shot (just of saline) to themselves so it wasn’t so scary when they had to do it to me. You are not alone in this! If you have any questions feel free to ask! Good luck with everything and think POSITIVE!


(Dennis J. Dacey, PwD) #10

And speaking of stuffed animals for kids, …
Have you checked out the “Resources” tab at the top of this page? There are “care Kits” available with one designed for kids; and there are other kits and lots of really helpful pieces of information for us.


(timothyputman) #11

Our daughter was diagnosed at 18 months, almost 10 years ago. It really helped me when I decided that there are lots of parents of sick children who would kill to be able to give their child a shot and keep them relatively healthy. You are keeping your children alive every day, which is what all parents do, but in a more visceral, immediate way. It’s hard - at first you’re overwhelmed learning all the new stuff, and then you’re numbed by the every-single-day grind of it - but you will do it, because there is no other option. Constant Glucose Monitors - we’ve had great experience with Dexcom - are game changers. It’s like flying a plane with full instruments, instead of getting one altimeter reading every 4-6 hours.


(wadawabbit) #12

Hi. I’m so sorry to hear the news about your kids. I was diagnosed at 3 years old, and am now 57. My parents told me they had a nurse come to administer my injections when I was first diagnosed. This was when you took one shot a day and the needles were a much larger gauge, and quite painful. Of course for children the age of yours there probably is no such thing as a painless injection, but hopefully with time they will get used to the routine and discover the pain is only momentary.
From starting on injections at such a young age I outgrew the fear of needles that plagues some of my adult friends to this day - I can have blood drawn or get a flu shot without blinking an eye. I have been using an insulin pump in lieu of injections for about 15 years now - I insert a new infusion set once every few days, rather than giving myself several injections each day. You children may find this much more palatable, although I don’t know if there is a minimum age. I also use a continuous glucose monitor so I will know where my readings lie and if I need to take action. You should discuss both with your medical team, and of course I understand insurance is probably a big consideration.
Hopefully there are support groups in your area for parents of diabetics - your pediatrician or endocrinologist should be able to point you to some.
Finally, as I got older, I attended summer camp for diabetics. Lots of fun, I was able to get away from my hovering (I mean loving) parents, and I imagine they were happy knowing they could take a break, knowing that I was in good hands.


(Melissa) #13

Hi there,

My daughter went into DKA at 16 months old. She’s 2 now and we are doing much better, try to explain as much as you can. Even though they are young, they will start to understand. It will be challenging and constant, but it is necessary. Getting an insulin pump really helped us. We still have to hold her down to change her sites sometimes, but the pump was a life saver. Stay strong!

Melissa


(jasontanner) #14

If there is anyone that remotely understands what you’re going through, it’s us. Our son went into DKA 15 months ago at age 7, and also turned our world upside down. We also got home, saw symptoms in our other son, age 13 at the time, tested him and he was diagnosed over the phone 4 days after the other one. Add to that, the 7-year-old was also diagnosed with Celiac and the 13-year-old with Hashimoto’s.

It does get easier, but life will never be the same. My recommendation, outside of the obvious “love them, help them, etc” is do your research! Understand your insurance fully and ensure your kids get everything they need. Our insurance tried to push the Medtronic pump on us, which is not even approved for children, and they CLAIM that it’s cheaper than Omnipod, but over 3 years it ended up being negligible.

Also, once they are in school, talk to the nurse, teachers, and anyone that will interact with them. Ensure they have a solid support system. We were fortunate to have a nurse that went above and beyond. We use the Dexcom G5 and communicate all day with his teacher and nurse to ensure he stays level.

It’s a lot of work, but it’s doable. Both kids went to the doc yesterday, and both had A1C of 6.4.

This forum is great for venting, seeking out folks with similar issues, and just asking questions.

Good luck!


(hockeymom) #15

Hi Ryan, I’m so sorry for the fear and loss you’re going through! As another reply said, these feelings are completely normal. My son was diagnosed almost 15 years ago at the age of 11. He is thriving and living 1000+ miles away and forging a career in the diabetes industry ironically! I also visit newly diagnosed families in the hospital through JDRF, and I do that because I had a friend and mentor when my son was diagnosed who helped me immeasurably with the coping process.
If you don’t know another family with T1D, I would also agree you would benefit from reaching out to your local JDRF chapter. They can connect you with other families who have been and are going through the same things. I know it’s hard to connect to strangers, but these people truly want to help you through your adjustment. The JDRF website also has great resources to answer a lot of your questions, but again, there’s no substitute for another parent’s advice.
Although this time is so difficult for your family (believe me, we all remember), you will get through it and it will get easier. As hard as it is, try to focus on your children feeling better and resuming their “new normal” lives. They can and will enjoy all the joys their friends are, they just have to take “medicine” to stay healthy. With new medications and technology, the outlook for T1D kids is improving every day. My son (now 26) is happy and independent. He loves playing golf and snowboarding, he lives a full life. Keep reaching out, there are many people to help you! Best wishes
Cathy


(Breebowen) #16

Wow! First and foremost, you are doing great!! My son was diagnosed at 9 (he just turned 13) and it rocked our world. During our three days in the hospital I managed to hold it together while his dad fell apart and both grandparents. When we got home as a single mom, every night when he went to bed I would do his Lantus and sit with the needle poised over him for two hours gathering the courage. Someone on one of these boards suggested doing it in their sleep and I did just that for the first year and a half. I of course managed to not wait two hours. My breakdown came at two weeks when I sent him back to school.

Give yourself time to breathe and allow yourself to let it out. You’re doing great! Being a T1D parent is an incredible job that changes daily. It’s often thankless and frustrating, but it’s also rewarding when your kiddos reach milestones, gain independence and just get to be a kid at times (often the biggest challenge). As everyone has said, it does get easier. Bearable is the word I use. It becomes a part of life you simply deal with. We laugh a lot about those two hours I spent trying to give him his Lantus. He makes fun of me now. And always laughs when I get stuck with a random needle. Find solace here.


(MariaC) #17

Ryan,
So sorry to hear of the double whammy of T1D. The good news is you have the resources of modern technology to assist. Thus far you sound like you’ve got this down. It gets easier as time moves on.

In 1971 at age 2-1/2, I was diagnosed with T1D. Back then people (doctors also) didn’t have the knowledge of this disease as we do today. Management was basic. I knew no other way of life. To me taking shots was normal. In 2006 I want on the pump and life became closer to “normal” non T1D life.

This past year my 7 year old was also diagnosed. He too is on a pump with a continuous gloucse management system. What I’m trying to get to is, life will not be different for your little ones because they will know no other way. Teach them how to manage. Granted it is awkward due to their current age, but it will get easier.

As the parent, it sucks to see your small ones live with this. To them this will be “normal” daily practice. Keep positive. It is the best thing for them.

If you live in he state of MD near the DC area, I’ll be happy to to be part of a support group. My son wants to be around kids with this. They learn and talk about this stuff with their peers better than with their parents. FYI-in our school there are 5 T1D children between the ages of 7-12. School systems are becoming better equipped with understanding how to recognize highs/lows.


(mommyofT1D) #18

My daughter had just turned 2 when she was diagnosed. She is 5 now and in kindergarten, and doing really well! She has never liked wearing a CGM, so we don’t do that, but she loves wearing an insulin pump, and that made a HUGE difference for the better for our family. It took our insurance company 4 months before they allowed her to get a pump, so I understand about having to do injections on little ones. We make being Type One as a positive thing, and she doesn’t think anything bad or negative about it. In preschool last year she enjoyed telling her friends all about diabetes and her pump, and this year in kindergarten she is blossoming! In fact when she goes out to check her blood sugar mid-morning, her friends want to know what her number was, and they know if she needs a snack or not! One very positive thing that I did was I reached out to other families in our area, and I found another little girl with Type One who is 9 months older than my daughter, and they have become good friends this past year. Since my daughter is the only Type One child in her school, this has made a great impression on her. Things do get easier as the time goes by, and this new life style will just become your new “normal”. I have also learned better eating habits and our whole family has become healthier eaters! Although my daughter loves chocolate and eats some everyday as dessert. Good luck, and reach out to us for anything!


(ReneeM) #19

Ryan, thinking of you- peer groups have been a life saver for me. My son was 8 at dx now 11, so we are 3 years in. I have found this group and several type 1 groups on Facebook to be priceless

The advice from others can be so helpful - NO QUESTION is a bad one.
CALL YOU DR. with ANY Questions!
DO NOT be afraid to advocate, in any setting, (school, daycare, dr. office), speak up.
We now use Dexcom CGM - LIFE-SAVER!, We bribed my son with Lego to wear because he did not want to wear. He now wears religiously.
We use Insulin Pens and will be starting Omnipod Insulin Pump soon.
Dexcom and Omnipod both have Facebook user groups, again, these have been great to share advice.

Best of luck, and post anytime.


(Emily) #20

I was diagnosed when I was five as well. My mother most recently shared with me her true emotions on my diagnosis after I began working on a presentation for school on how type-1 diabetes alters the family dynamic. She said to me that it’s truly amazing what you can get used to. She, too, could not bare the act of giving shots and comforting me when she, herself, was in a state of disarray…but she did. And by god’s grace, I promise you, things get so much better. You, as a mother and now victim of type-1 diabetes’ overarching burden, are capable of so much more than you know. My mother was my shining light throughout my early years with diabetes and I am incredibly thankful, now as an 18 year old, for the courage and compassion she showed me then. Be courageous and know you are capable. You’ll do great, I promise.