I guess we are part of your world too


#1

So its been almost 3 weeks since my 7 year old son was diagnosed with Type 1 diabetes. I am still in a state of disbelief, but my wife and I are slowly coming to accept this. Honestly my son who is the one that has the illness himself seems to be coping better than the rest of us. We have both been randomly crying off and on since this happened, its slowly getting better but the first two nights when we brought him home were the worst of my life, it honestly felt worse than when my mother passed. I think that was because I was so worried about the possibility of losing my son to this crap. He’s been doing better, and as he does better we all do better. Reading some stories about people who’ve lived decades with this has been encouraging, now I’m more worried about making sure my son lives as normal and full of a life as he can. I hate being the family at the school with the special needs child, I hate being worried if he’ll be unable to do what normal kids do because we have to constantly monitor his bloodsugar levels. Just today he missed his first day of 2nd grade because the schoold didn’t have their act together and the nurse wasn’t there so they sent him home (I was so ticked but it’s being worked out tomorrow). I go from being sad to angry so often so quickly over this its like I’m bipolar. I like to hope this can be cured soke day but it seems people have been hoping for and told this crap for decades. Why my son? What the hell? Sorry just need to vent.


#2

Yes you are part of our world now, welcome to the club no one wants to join. Since you were forced into our world we are glad that you found us.

I’m sure it is devastating news and all your emotions are normal, The best we can say right now is that it will get easier. It has become a permanent part of your lives and soon will be as normal as it can be.

Life does not stop because of diabetes, There are few things that diabetes prevents in life, your child can be normal. A normal child that just happens to have diabetes.


#3

I am sorry about what you are feeling. I know the disease seems huge to you right now. Over time, it will become smaller and smaller.

Read about it and just take in little bits as you can. Learn from others. Don’t try to figure it all out right away. It takes time to learn. Ask questions. People will share information with you to help.

He will be fine.

Whatever activity or thing he likes to do, let him do it. Being able to fully embrace what he is passionate about will help him continue to live life to its fullest and enjoy it.

Diabetes does not stop you from anything. The only thing that can stop us is ourselves.

Let me know if I can help with anything.


#4

Hola @Ninja300r,

No need to apologize for anything, we get it. My youngest son was diagnosed when he was 3; today he is 15; competitive athlete, a great student and the most extremely happy human being. Of course, those first days and months are tough, but you get used to that new normal and start finding ways to do things better.

It takes time, and patience, perseverance, and a whole lot more things, but you guys will be fine.

We are here, let us know how we can help!


#5

These are all perfectly normal emotions when you kid is diagnosed with a lifelong chronic illness but please take comfort in your sons acceptance and ability to bounce back from what can often be a traumatizing hospitalization if it wasn’t caught early enough. I hope that you and his Dr.s caught it before any damage was done and just know that with all of the advances in the past 10 years or so diabetes is not the bogeyman anymore.

Unfortunately, your school experience is all too familiar to me from my school days and I’m sure my mom had the worst time making sure I got the care I needed while there, but there are plans that you can draw up to make sure he is well cared for while in school (I think they are called 504’s. Am I right @Mila).


#6

Yes, you are right!

@Ninja300r here more info and resources:

https://beyondtype1.org/whats-a-504-plan/

https://beyondtype1.org/elementary-school-with-type-1-diabetes/

https://beyondtype1.org/school-downloadables/

https://beyondtype1.org/a-teachers-guide-to-kids-with-type-1-diabetes/

https://beyondtype1.org/talk-classroom-type-1-diabetes/


#7

I’m not a parent, but I do remember when I was diagnosed 30 years or so ago in early elementary school. My parents were occasionally a little paranoid, and some of my teachers had a little trouble accepting what they needed to be aware of, but before long I felt pretty much back to normal. In fact, before long, the changes felt so small it felt like they were the normal. And by the time I finished middle school (which I did just as quickly and well as all the other students, the Diabetes didn’t slow me down), it was almost hard to picture my life without Diabetes. And the same will probably happen for you, probably even quicker. It’s just like most other things, they take a little while to get used to, but before long, you’ll hardly think about them.


#8

I was diagnosed at age 8, now am 72 and still a reasonably healthy mother and grandmother who contributes to society.


#9

I am so very sorry your family is now part of our group! But we are a super great group and we all get it!
And as I have said and believe with all my heart! Parents of children with type 1are Gods gift to all of us.
I don’t know how my parents survived my childhood?! But survive they did and so did I with their care and support!
I was diagnosed when I was 8 and it’s coming up on 48 years now. I was never told no I couldn’t do something when I was growing up. Did sleepovers, went to parties, played outside until well last night fall. Did sports all through school, participated in most school activities. If I wanted to, I did. My parents only made it very clear that this was something I had to deal with. It was going to be with me throughout my life and it was my responsibility. I think it has helped make me the strong, caring, disciplined empathetic person I am now.
You guys have this. There is so much more support and technology now, that it is easier now and the outlook is so much better now.
Please ask for help and let us know when you need to vent or scream! It is to be expected! Your a parent who wants the best for their children! I love you!


#10

I have had Type 1 Diabetes for about 25 years since I was diagnosed in high school. It was a hard time for me dealing with this diagnosis as a teenager and in my 20’s the most. I hated being called a “Diabetic”. But you shouldn’t think of it that way. It’s just a medical issue and lots of people have medical issues. I try to think of it as an annoyance but one that I can manage.

I have a child so I can relate with the worrying aspect of having your kid be sick. You have to try to focus on the good aspects of it all. It’s good that they were able to figure out that it is Type 1 and are able to provide treatment for it. Type 1 is mainly constant monitoring. Now a days there is a lot of technology becoming available. So that is definitely a great thing.

I am on a Medtronic insulin pump and use a Dexcom CGM to help monitor blood sugars. My neighbor has a daughter who is 9 with Type 1 and was diagnosed at 3. She uses the Omnipod pump. The whole saying of take things one day at a time definitely applies here. You might want to see if there are any type of support groups or something like that for your child as they get older. I wish I had done that when I was younger. Now things are better. If I am feeling a certain way I have that moment (cry or scream if you need too) and then move on from it. Life is a challenge in general and completely healthy people can have issues all of a sudden. So the best thing to do is keep monitoring things and make sure you have a good Endocrinologist. I have had several over the years. One of my best was a Nurse practitioner at my Endocrinologist office.


#11

Try to stay upbeat and positive and try not to show your son your sadness. It’s important for them to know that this is not a terminal illness or life altering disability. It’s an inconvenience in life, but something you will learn to deal with. Read all you can, try new things and adapt and change as a family. All the best to you.


#12

Find the ‘Arden’s Day’ blog on the Internet. Scott has a podcast called the ‘The Juicebox podcast’ that has been so helpful to me. Someone on here shared the podcast with me and it has changed my life! His daughter was diagnosed at age 2 and is a teenager now. Also, as a parent I value multitasking- I can listen while I drive/now the lawn/do chores. It’s awesome. He inspires me to live my best life with diabetes. It’s upbeat, encouraging, and most off all informative!


#13

So its been exactly a month since my son’s diagnosis. Still plugging along, things seem to be getting back to normal or the new normal with this disease. We’re looking at getting a Dexcom G5 for my son soon. Obamacare/ACA seems to be a mixed bag as far as healthcare for this illness goes. On the one hand its good kids like my son can get state assistance for this and that he can’t be denied coverage for a preexisting condition. On the other hand I’ve read some horror stories of people on the ropes financially trying to deal with this disease and rationing their insulin leading to their deaths in some extreme cases because their health insurance is both expensive and yet their coverage is so poor and deductible so high. This worries me about the future. For now my son’s doing well, school is going well for him. We’ve talked about eventually insulin pumps but I’m not sure there is a huge advantage to those vs just taking injections. I really hope they can get some better treatment soon that offers more insulin independence if not an outright cure which seems to be far off because of the nature of autoimmune diseases. I’ve also been wondering a lot about when and how this started. He always had accidents when he’d wet his pants off and on since kindergarten but they subsided for a while then started to come back towards the end of the school year this past June. As I understand it, he probably contracted some sort of viral infection which his immune system responded to as its supposed to and attacked it. But virus had a similar molecular structure to his insulin producing beta cells created by his pancreas and so his immune system not only attacked the viral infection but also attacked his beta cells in what amounts to an ongoing biological friendly fire incident. Please correct me if my understanding of the desease is off but this is what I gathered from reading.


#14

Yep this is what happened to me as well and a lot of other diabetics can say the same.

Premium top tier insulins like Humalog are very expensive but there is absolutely no reason for anyone to die because they cannot afford them. Walmart has older insulins (regular and N, both are OTC) that are $25 a bottle and you can order insulins from Canada that are half the price or more of what they are here in the US. In addition, all of the major insulin manufacturers have charitable organizations (completely free insulins and syringes) that you can apply to if your income is too much for governmental assistance but not enough to afford your medications. Although getting this takes some cooperation from your Dr. and quite a bit of paperwork.

As for a cure keep taking good care of him so that you can preserve what beta cells he has left and keep your fingers crossed that they find something that works well on humans (I personally am rooting for Dr. Faustman’s research). There are 2 problems the way I see it with finding a cure. First there is stopping the auto-immune attack and second there is restoring beta cells. If you still have some functioning beta cells them IMO you would have a better chance of something working sooner than those of us who will need a fresh infusion of beta cells somehow.


#15

This is much the same info I heard when I was diagnosed T1D almost 35 years ago. Until we know differently, this is a credible explanation of things.

I was diagnosed at the age of 30 and lucky to avoid diabetes as a child. I’m here to tell you that your child will experience few limitations due to diabetes. Modern treatments, including all the electronic D-tech helps a lot.


#16

The sad thing about diabetes is no one really knows. There are so many possibilities for how it happens. But many, like me was a perfectly healthy little kid one day and a few days later was in a coma. I wasn’t sick before and I was a fall diagnosis so flu/ cold season wasn’t ramping up. And this is why this is such a challenging disease.
And every parent wants answers and solutions. I know my parents only wanted a cure. And the family did every fund raising event we could to raise money for the cure. After many years, we realized it was just way to big a hope at the time.
But I must say, for the first time in my almost 50 years, I feel hopeful. And while I don’t think I will see a cure for me in my lifetime, I do think it will happen. And I hope and pray they can discover a way to prevent it. Doesn’t help all of us but if we can keep others from having to do this everyday, I’m all in.
Please don’t give up hope. I have been in so many clinical trials, I really do believe all these researchers are very passionate and driven to help us. It will happen! And I just keep plugging along doing the best I can. My thinking is, I want to be in the best shape possible so when that cure does happen, I can get in line and be healthy enough to have it work for me.
Love you parents of type 1 children!