Families with Multiple Members with Type 1

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Families with Multiple Members with Type 1

A group for families that have more than one member with Type 1.

Members: 71
Latest Activity: May 11

Just to introduce myself my name is Tracy from Tulare, CA. A proud wife and mother. My Husband is a Type 1 diabetic ( dx @ 16 months )on the Omnipod since 6/2010 and both of my sons are also type 1. Michael age 8 dx 5/2008 on the Omnipod since 1/2009 and Owen is 6 dx with type 1 and hypothyrodism 7/2008 he is also on the Omnipod since 4/2010. He was also participating in TrailNet prior to dx where he was shown to be positive for the antibodies). I started this group to get to know other families that have multiple members with type 1.

Discussion Forum

DFF(Diabetes Friend Forever)

Started by Renata Pellino-Porter Feb 18, 2010. 0 Replies

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Comment by Regge on May 8, 2013 at 5:31pm

We have had quite a year so far. Surgeries, A1c's x 4...still need to get an A1c on my non-d son. We are now getting ready for our regional Tour de Cure where are family has been asked to be the ambassadors for. Diabetes is a wild ride and many days I am ready to get off the roller coaster!
2 kids out training and having a great time!

Comment by Jonna on May 8, 2013 at 2:05pm

Deadisletsx2, I completely understand your burn out. I, too, have 2 kids diagnosed with T1D with no family history. My kids were just about the same ages as your when diagnosed. It's okay to feel the way you do. I sometimes think I just can't do it for one more minute. If one child is doing well, the other has sugars that are all over the place. There isn't a meal, outing, or a night of rest when your mind is not constantly going back to your kids and hoping that they are okay, whether they are right beside you or in school. For me, I have a great husband who knows when I'm at my breaking point and gives me a night out with my girlfriends or just a day to go shopping with my sister once in a while. It's not frequent, but I cherish those days! Don't beat yourself up for feeling the way you do. You're not alone. You can private message me anytime you want. Are your kids recently diagnosed? I went into a real funk when my second child was dx'd. But it has gotten better! Hang in there!

Comment by Kilij on May 8, 2013 at 1:42pm

Deadisletsx2, because I'm one of the two siblings in my family that has type 1 diabetes, I don't get a break from diabetes. But I can understand as a parent your need for a break for yourself.

I would suggest regularly scheduling time for yourself. I would also suggest shifting your focus onto living a healthy lifestyle for yourself, so both you and your little ones can benefit.

And maybe this article will give you a little chuckle in the meantime: http://www.huffingtonpost.com/steve-wiens/let-me-be-the-one-who-say...

Comment by deadisletsx2 on May 8, 2013 at 1:16pm

I just joined this group now. I have no family history of T1D but two of my kids have it. One was diagnosed at age 5 and the other at age 2 1/2. I'm seriously burned out and depressed. I've gained weight and cannot see clear to take a break from dealing with diabetes. What do you all do to get a mental break from diabetes and take care of yourselves?

Comment by Emjaybee on April 27, 2013 at 11:03am

Kilij - thanks for the info on the dairy. I had no idea. I'll check that out! Regarding Trial Net, I'm not too sure, but I'm seeing a lot of people post about it. It looks like aliceclones also just posted on how they use it. aliceclones - thank you for the info on trial net. I will look into it. I'm sorry to hear that two of your kids and a nephew have it. My sister and I often comment on how we won the worst lotto ever too.

Comment by aliceclones on April 26, 2013 at 10:10pm

Hi Emjaybee! We were told that our other 2 children still only have a 5% chance of developing the disease. We look at is as having won the worst lotto ever! We are of scandinavian decent, so that puts you at higher risk. Our 2 non d kids are in trial net, aside from early detection (as much as 5 years prior to clinical threshold, which is a huge advantage in itself), trial net can also direct you to trials that can delay onset if you fit criteria. There are several very promising new trials out there, so getting in early can be life changing! Even if you are guarenteed a D child, i would still have them. My D girls are fabulous people! I wouldnt change them. Yes i wish i could cure them, but this disease has shaped who they are, not just for bad, but for lots of good too! Blessings on you and your husband! good luck!

Comment by Kilij on April 26, 2013 at 5:05pm

It's been recommended since I can remember to avoid feeding children cow's milk during infancy to help avoid the onset of type 1 diabetes. The American Academy of Pediatrics suggests avoiding cow's milk protein for the first several months of life to reduce the development of type 1 diabetes. http://pediatrics.aappublications.org/content/94/5/752 Here are a couple of abstracts suggesting cow's milk protein is an issue: http://www.ncbi.nlm.nih.gov/pubmed/11206413 and more recently, http://www.ncbi.nlm.nih.gov/pubmed/21067382. Sorry I can't seem to find where I put the studies in whole.

I've not done anything with Trial Net. What do they have to offer other than early detection?

Comment by Emjaybee on April 26, 2013 at 3:29pm

Thanks so much for sharing, Kilij. That's good to know. Is Dairy a trigger? I'm seeing a lot on this page about Trial Net. Do you know what that is? Do you recommend?

Comment by Kilij on April 26, 2013 at 1:54pm

Hi Emjaybee. I was diagnosed at age 3 and my younger sister was diagnosed at age 11. I also have no other siblings. My daughter, who will be five in a few days doesn't have it (yet) and neither does my nephew who just turned four. We do stay away from dairy though.

Comment by Emjaybee on April 26, 2013 at 1:44pm

Hi all, I have type 1 and my younger sister does too. We were both diagnosed at age 20. Our father had type 1 as well and he was diagnosed at age 6. We don't have any other siblings. My husband and I are considering starting a family and wanted to get a decent idea of the risks. Our genetic counselor told us it would be 15 - 20%. Reading through this thread, I just...don't know. It seems like once it's in your family - it's in. My sister has one son who at age 7 doesn't have it so far. Just sharing a story for now.

 

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