T1D diagnoses in NOVA

[Anonymous]

My DC was recently diagnosed with type 1 diabetes and to say we’re overwhelmed would be a huge understatement.

We’re currently with the pediatric endocrinologists at INOVA children’s developmental pediatrics. People have asked if I’m happy with them, and this is so new I have no idea? We will certainly give them a try, but do any of you have any recommendations for doctors we should also consider?

Are there any other local resources you have found useful?

This is a very lonely and scary feeling.

[Anonymous]

I’m not in NOVA, so I can’t help you with your specific question, but I have a t1D kid, also diagnosed as a teen, and I want to say I’m sorry.

It is a LOT at the beginning. It is overwhelming and takes all your thoughts, and it feels like nothing will ever be normal again. (And I was sad. My god, I was so terribly sad.)

But it does get easier. It’s never not-there, but it fades more into the background. He’ll figure out his carb ratio, and his correction ratio, he’ll figure out when the best time to bolus (give himself insulin) is, and how his body responds under different circumstances. He’ll move to a continuous glucose monitor and an insulin pump if he’s not there already, and both of these things will help. At first there will be middle of the night alarms, and you’ll panic every time, but you’ll stop panicking after a while. Because it’s mostly just information about what to do next.

There’s a nice message board based on California called Brave Buddies — there’s no limit by geography, and you can ask questions there.

Please consider sending him to diabetes camp. It was lifechanging for my kid. DYF (associated with Brave Buddies) has a teen camp. There are cool programs all over the country. It helps.

But it is a lot at first. A LOT. It just is. You are in the hard part right now. This is the part you get through, before it gets easier. It does get easier. Hang in there.

[Anonymous]

Also OP, I will check this thread. I can’t always check during the day, but I will make a point to check in the evenings.

It will be okay. A new normal will come. I promise.

[Anonymous]

Here is that Brave Buddies link.

https://groups.io/g/BraveBuddies

Not all of the messages will be relevant (there are a lot need/offer supplies messaging in Northern California) but I’ve found it a helpful resource for questions and support.

[Anonymous]

Thank you so much. This means a lot to me. This is so lonely.

[Anonymous]

Also, I’ll add he’s still early elementary and I’m not sure how much he understands, which is a blessing and a curse.

[Anonymous]

Op I have a family member who was diagnosed as a young adult. They would be happy to speak to you if you are interested. Just post a dummy email if you want. It’s a lot but please know that it gets so much easier to manage than what you are dealing with right now.

[Anonymous]

Anonymous wrote:Also, I’ll add he’s still early elementary and I’m not sure how much he understands, which is a blessing and a curse.

I’m the PP. I’m not sure how I read “teen” into your post — I must have thought I was in the teens and tweens forum? All the rest still stands. There are beautiful things down this path, too. It is not all fear and loss. That’s just the part you’re in right now.

Please take good care of yourself as you take care of him.

[Anonymous]

Since summer is coming up you might want to attend diabetes camp. This is the one I know about but there are others--scroll to 7/27:
https://campaccomplish.org/camp-schedule/

[Anonymous]

It is so hard in the beginning, but it does get easier. My child was diagnosed in elementary school, and we have been seeing Dr Lazareva at Inova Children's for seven years and have had a good experience with her.

Camp Holiday Trails has been a great experience when you are ready. Hang in there!

[Anonymous]

My dc was diagnosed at 3, and is just about to graduate from college. It was very hard at first, but we, and now she, have learned how to manage it. She has a great life, she is happy, healthy, adventurous, and it hasn't stopped her from doing anything she wants to do. She uses an insulin pump and a continuous glucose monitor. When she was younger, we used a blog called "Children with Diabetes." They also have a yearly meeting in the fall, usually at the Fairview Marriott in Northern Virginia. There is also a Community Summit in Bethesda each year in March that is very helpful.

[Anonymous]

Hope you’re hanging in there, OP.

Went out to dinner with my T1D kid tonight; the cutest young couple was seated at the table next to us was. My kid observed that the guy (healthy, adorable, clearly head over heels in love) had an insulin pump on his arm. Saw him give himself insulin when the food came — he just eyeballed it and bolused and went on with his date. Anyway, I thought about his parents who once were surely overwhelmed and lonely with the newness of it all. And here he was, living his best life, all of it second nature.

It will be this way for your family someday, too. In the meantime, one day at a time. Hope you’re doing okay.

[Anonymous]

I’m not in your area, but wanted to share that I know two people who were diagnosed with type 1 diabetes as children. One is an adult now and completely thriving, married with a child. The other is in kindergarten and is doing so well. A lot to manage especially at the beginning but it sounds like you are doing and learning everything you can. Wishing your little one good health soon

[Anonymous]

My child was diagnosed at age 2 and about to start high school.

It gets easier!!!

[Anonymous]

Dr. Lazareeva at Inova. My t1 child has been seeing her for years and she is wonderful. Now my child is going to college. You can do this op. Lots of support on fb groups. Fcps has been very good for my child. Good luck.