Family with 3 type 1 diabetics looking for support group


(Virginia) #1

I am looking for a support group that specifically deals with families that have multiple type one diabetics. It is really hard to find anyone that deals with my same situation. I have had type 1 for 26 years and so does my 5 year old daughter and my six year old son. My daughter was also recently diagnosed with Celiac disease as well. I just need some new friends who I can talk to. I feel very isolated at times.


(carl benwon) #2

Hi GinnieRobb, 14 months ago, I wouldn’t have anything to offer. We just had our baby daughter with type 1 (baby? She was diagnosed at 11 and is now 25). So much parenting included all those concerns. Quite the shock on first diagnosis!

Last year, both my son (then 26) and I also contracted type 1 diabetes. It’s likely LADA, but no matter at this point I’m on Lantus and Humolog (mealtime bolus). I think he’s just using the long-acting.

in recent weeks my LADA has become much more like typical type 1 in that my blood sugars are all wonky and often make no sense. What worked yesterday may not work so well today. Heck, I don’t have my carb ratios figured out either.

So, not sure if I’d be much of a support group, as parenting is behind me. I also have a wife that gets it via the three of us! So thankful for that!

In the workplace? Nobody gets it at all!

f-d


(Virginia) #3

Hi Carl, thank you so much for responding to me! I consider anyone that shares my situation very comforting and helpful. My daughter was diagnosed when she was 17 months old, she is 5 now and my son was diagnosed at 4, he is 6 now. I was diagnosed when I was 8 and I am now almost 33. There are days where I feel like I have the world on my shoulders but at the end of the day type 1 has a mind of it’s own and it often doesn’t make sense. It’s just really hard to find anyone that understands my pain and struggles, so once again, thank you for responding to me.


(vdenerson) #4

Hi. I am a mom of two type 1 kids/ now adults. Son diagnosed at 17 now 26 daughter diagnosed at 11 now 21 (diagnosed 8 months apart). Have been through many ups and downs, school, sports, sleepovers, college! Being you lived the life yourself I hesitate to think I could offer much ~ but support I have lots of! We also have one non diabetic child. Our lives have obviously changed but in many ways our diets and activity has changed for the better. I cannot wait until there is a cure ~ as a mom my every wish,dream and prayer is for a cure. Until then we have been able to trudge our way along together STONG.
Any supports I can offer I’m here,
VDenerson


(srozelle) #5

Can’t help with multiple T1D family members, but our daughter (who has T1D) has Celiac, as does my husband (he doesn’t have T1). Anything we can talk about that might help?


(Virginia) #6

Thank you for responding. It’s just nice to know there are others out there. I often sit and think about what I’m going to do when my kids are older. They are just so dependent on me for everything right now as they are just 5 and 6, which I know is normal but I know the time will come for me to let them go. The only thing that helps me get through my days is the fact that I’m still alive and well 26 years later after my own diagnosis. For me it’s just one day at a time. All I can do is be strong and teach my kids to do the same.


(Virginia) #7

Thank you for responding. The celiac diagnosis is very new and I am still trying to navigate through it. It is very hard because my daughter is an incredibly picky eater and at the moment only likes about 6 foods. I was wondering if you ever run into high blood sugars with some of the gluten free foods? I know the majority of them are made with rice flower.


(vdenerson) #8

Hi again,
My eldest recently got married and I’ve had to relinquish myself over to his wife. Unfortunately he doesn’t share with her very much. We are actually going to have a “sit down” with him because I talked w/ his Dr. and he isn’t handling himself as well as he should. As a mom I think we will always be where we are most needed. My daughter is doing very well her A1c today was 5.8. She is using a CGM and is able to see what her numbers are all day (via her iPhone) and her device shares the same income/ me. It is VERY helpful!


(Nichole Acosta) #9

I see you’re looking for family support. Have you joined jumoconnect.com yet? It’s free with kid and parent friendly resources to help you better understand and manage your health conditions. Definitely check it out! -your fellow T1D


(srozelle) #10

Celiac adds a whole other dimension, for sure. My daughter’s picky, too, but the good news there is that yours is likely to get less picky as she gets older, same as mine did.

You’re right about the GF stuff being tricky. Since so much of it is rice flour, and since they can’t have anything with, say, whole wheat, it’s all fast carbs. No stops, no waiting.

We recently started enforcing the “eat your protein first” rule, which seems to be helping to smooth some of it out.

Separately, of course, cross-contamination is a real thing, and since gluten is literally everywhere, she sometimes gets sick despite our best efforts. I haven’t gotten serious about trying to gauge whether being glutened affects her blood sugars, but I suspect it does, if only because of the stress on her body.

Oh, and I don’t know if this is your experience, too, but we had to cut out dairy for the first year and a half, while her body healed the damage to her small intestine before she could digest it again. That was hard, because something like 1/3 of her calories came from yogurt, milk, and cheese. We found non-dairy substitutes, but once she was able to add dairy back, my life got way easier.

Let me know if you’ve got other questions. We’re four and a half years since the Celiac Dx, and I am so grateful for how much more readily available GF foods are, and how much better labeled they are!


(Virginia) #11

Thank you so much for all of this information, it was really helpful to me!! It’s just all so overwhelming to me and new to me.


(Eric) #12

Hello! I was diagnosed in November of 1981. My 3 year old daughter was diagnosed in October of 2014 on her brothers birthday and my 5 year old son was diagnosed on Memorial Day of 2015. We all live the diabetic journey together! They are doing great. Me and my son are on the Omnipod, my daughter Medtronic, and all of us are on Dexcom’s. If you need anything just feel free to ask!


(Virginia) #13

Hi Eric! Oh my goodness, are stories are similar! How are you liking the Omni Pod. I havent put my son on a pump yet, but I am trying to decide between the Omni Pod or Medtronic. I am on a Medtronic, my daughter is currently on an Animas and the Dexcom. I would love to have a Dexcom too but we just cannot afford it right now. I would love to talk some more! Thank you for responding to me!


(Eric) #14

No problem. Me and Cam love the Omnipod. It is easy to use and changing the pods are a breeze. I like them because there is no tubing with the pods.