Type I Diabetes

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studioone
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3:30p, 5/22/21


So my 9 year old daughter (eldest twin) went to the doctor on monday because we couldn't figure out why she was loosing weight.... Doctor found out that she was severely dehydrated and diagnosed her with TID. He then put her in St.Joes Emergency room to get some fluids in her, and St Joes put her in an ambulance and we got to visit Texas Children's Hospital In houston for 6 days. Just got home.

Now we have to give her 4 shots a day and stick test 4 times a day, for life.... I'm secretly calling her 'princess pincushion'..

What kind of support does BCS have, if any, for kids with diabetes?
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Ukraine Gas Expert
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In reply to studioone • 3:44p, 5/22/21
AG
https://www.bvendo.us

Doctor and nurse both Type 1, good people and passionate about helping. That's all I have.
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studioone
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5:26p, 5/22/21

was thinking more like parent support groups or something.. kids get together and hang out and trade low carb snacks or something...
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UmustBKidding
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5:51p, 5/22/21
As indicated kelly at bvendo will know of anything that exists. Need to figure out how to get on pump and cgm, getting good control now will make a difference her whole life.
My son diagnosed at 15 unconscious dka with blood glucose >800 has a1c <7 since then now 26 with pump cgm.
There are also some jdrf studies about t1 in family and twins i believe, again kelly in touch with those things
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Ukraine Gas Expert
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In reply to studioone • 5:53p, 5/22/21
AG
I'd start with Kelly because she knows everything available in this area and will go way beyond anything to help.

Sorry I should have clarified.
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studioone
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In reply to Ukraine Gas Expert • 6:23p, 5/22/21
Ukraine Gas Expert said:


Sorry I should have clarified.


Yah.. I have ADHD... so I just look at the website and go... "ok, I'll show that to the wife..". and then not read it...

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EBrazosAg
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In reply to Ukraine Gas Expert • 6:24p, 5/22/21
AG
Ukraine Gas Expert said:
I'd start with Kelly because she knows everything available in this area and will go way beyond anything to help.

Sorry I should have clarified.


I'd do a very detailed search of comments and reviews.
All docs and their clinics have issues. Some more than others. In the end be willing to try someone and change If dissatisfied.
No material on this site is intended to be a substitute for professional medical advice, diagnosis or treatment. See full Medical Disclaimer.
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histag10
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6:27p, 5/22/21
AG
I know it seems super overwhelming, but it will get easier. If you dont have it, one touch has a meter that syncs with an app. Its a great way to track numbers (i always forget to write them down, and the app creates a graph for me).

I am not yet at a pump level and am still considered "pre diabetic" with LADA (diagnosed at age 21 I think), so I still stick myself to test. One Touch's lancet is also not as painful as AccuChek
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1.618
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6:52p, 5/22/21
As the parent of a child (now young adult) with a complex medical condition, I want to say that it might have been tougher on parents than on child in some respects. We immediately started mourning the things that wouldn't be and felt terrible for our child. Child was still processing the day to day impact while we jumped way ahead. We should have stayed "in the moment" with our child. Over the last 7 years, we have gotten very good at managing the condition and at getting the proper medical team together to help us. Things have also changed in that new medications and treatments have been developed that are game changers.

So. while you might think that there will be needles galore for life, you might be surprised to find that the condition can be managed without multiple sticks each and every day sometime in the near future. The pain management for our then 12 year old child became our focus and was overwhelming at the beginning. Today, it is just a part of life and rather well managed after lots of practice and lots of helpful doctors.

Another thought that I will share is that the mental health component should not be overlooked. Giving your child a non-family adult to vent to and develop coping strategies with is invaluable. We have another child close in age and the comparisons were always tough even before the health condition arose.

I wish your child and your family all the best. While this will impact one person directly, the whole family will likely be changed by the experience. You may be surprised to see the blessings that come out of this life changing challenge. I know that our family was and continues to be.
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KidDoc
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9:11p, 5/22/21
AG
Look up Dr Stephen Ponder. He is with S&W and is a Type 1 guru as well as a Type 1 himself for a LONG time.

I diagnosed my now 22 year old son with T1D @ age 8. It is treatable but not easy. Prayers and good wishes to your family!

Sugar Surfing Co-Author: Stephen W. Ponder MD, FAAP, CDE

I am not Dr Ponder. I just know him and have worked with him through my own son and several patients over the last decade or so.
No material on this site is intended to be a substitute for professional medical advice, diagnosis or treatment. See full Medical Disclaimer.
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birdman
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7:47a, 5/23/21
Encourage your daughter to take cooking classes. It may sound stupid, but it's a good idea. Let her cook all the time, anything she wants. Same with grocery shopping.
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EBrazosAg
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In reply to KidDoc • 8:25a, 5/23/21
AG
I'd put a lot of stock in this recommendation .
No material on this site is intended to be a substitute for professional medical advice, diagnosis or treatment. See full Medical Disclaimer.
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KaneIsAble
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9:37a, 5/23/21
AG
Parent here of T1D. Ours just turned 6 and was diagnosed about a year ago. Sell whatever you have to if needed to get her hooked up to Dexcom. Being able to see the peaks and valleys will help figure out good carb to insulin ratios and life starts getting better from there. We use TX Children's as well and don't ever hesitate to call them with questions; they're incredible at what they do and very very responsive and passionate.

We're now on a Tandem pump and that's helped a lot too but they likely will make you wait a bit so you can learn to take care of her the "manual" way with the daily injections.

Last note; we came home with Basaglar and ended up switching to Lantus which worked much better for ours.

T1D is a dance, just be prepared to pivot because as soon as things get regular she'll hit a growth spurt and you have to start tweaking ratios again. I can post my info if you ever need to reach out. It's truly scary at first but it gets better. Prayers to y'all; I know you need them.
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Gearman2112
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10:09a, 5/23/21
I can't say how much Dexcom helps you understand how your body reacts to different foods. You can use a app that will also give you the a1c. You can check your child's blood sugar from your phone while they are in school or away. You will get low alerts alarms plus a huge amount of data to help you. I honestly think everyone should wear a Dexcom for a month to really see what different foods do for you.
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Goat Man
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11:18a, 5/23/21
AG
Another vote for Dexcom. It was a game changer when we started using it a few months after diagnosis.
Our ten year old was diagnosed about 8 months ago. It can be challenging to get adjusted to life with a T1D but we are blessed our kid has handled it very well so far.
I would be available to visit later today if you like. Let me know and I will post my info. My neighbor is Type 1 and visited with me for an hour soon after our kid was diagnosed and it helped us a ton.
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Well, okay then
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In reply to Ukraine Gas Expert • 12:26p, 5/23/21
AG
Ukraine Gas Expert said:
https://www.bvendo.us

Doctor and nurse both Type 1, good people and passionate about helping. That's all I have.
50-year Type I here, the last ~10 seeing Dr. Crumpler at BV Endo. I *strongly* recommend.
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NurseC
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12:47p, 5/23/21
AG
First off, I'm sorry this is happening. I know it's very overwhelming and terrifying. Tons of information being thrown your way, and being pelted with ASSvice from well meaning friends and family.

I was diagnosed at age 9 and am now 38, have had two successful pregnancies and am 100% complication free. The Endo I work with was diagnosed at age 13 and is also complication free. Many people think of the complications associated with diabetes during a diagnosis, but those things only happen after many MANY years of poor control and super high sugars.

Dr Steve Ponder, mentioned above, was my pediatric endocrinologist when I was a kid and taught me a ton. He and his staff at Baylor S&W in Temple are great and do telemedicine visits, if you find yourself displeased with TCH. TCH is a huge complex machine, and where I was diagnosed, it can be hit or miss depending on the doc. I hope your experience there has been a positive one!

Please feel free to reach out to me with any questions you have (I know you have a million!) I am beyond happy to assist, free of charge, while y'all navigate through this stuff. I 100% encourage you to go ahead and submit your information to Dexcom online to get the ball rolling with insurance so y'all can get her on one. It checks her sugar 288 times a day and displays it on her phone/device and yours, and alarms to lows/highs, sometimes before they happen. Continuous glucose monitors (CGMs) like Dexcom are game changers for us and make things SO much easier!

Again, reach out to me, anytime:
Kelley Crumpler 979-213-3783
NurseCrumpler@gmail.com

T1x 29 years, endocrine nurse and diabetes educator x 15 years
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NurseC
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In reply to EBrazosAg • 12:49p, 5/23/21
AG
**Sticking with my original post. Offering to help OP with local T1 support groups and questions and my personal contact info. Happy to help anyone in the T1 or diabetes community.
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Aggieterri
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1:01p, 5/23/21
AG
My 32 year old daughter was diagnosed at 3 years old. There is a camp for children with TID called Camp Sweeney. It is just a little north of Gainesville, Tx. My daughter absolutely loved it. They used to have several sessions during the summer. I would highly recommend Camp Sweeney.
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KaneIsAble
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In reply to NurseC • 1:13p, 5/23/21
AG
NurseC said:
First off, I'm sorry this is happening. I know it's very overwhelming and terrifying. Tons of information being thrown your way, and being pelted with ASSvice from well meaning friends and family.

I was diagnosed at age 9 and am now 38, have had two successful pregnancies and am 100% complication free. The Endo I work with was diagnosed at age 13 and is also complication free. Many people think of the complications associated with diabetes during a diagnosis, but those things only happen after many MANY years of poor control and super high sugars.

Dr Steve Ponder, mentioned above, was my pediatric endocrinologist when I was a kid and taught me a ton. He and his staff at Baylor S&W in Temple are great and do telemedicine visits, if you find yourself displeased with TCH. TCH is a huge complex machine, and where I was diagnosed, it can be hit or miss depending on the doc. I hope your experience there has been a positive one!

Please feel free to reach out to me with any questions you have (I know you have a million!) I am beyond happy to assist, free of charge, while y'all navigate through this stuff. I 100% encourage you to go ahead and submit your information to Dexcom online to get the ball rolling with insurance so y'all can get her on one. It checks her sugar 288 times a day and displays it on her phone/device and yours, and alarms to lows/highs, sometimes before they happen. Continuous glucose monitors (CGMs) like Dexcom are game changers for us and make things SO much easier!

Again, reach out to me, anytime:
Kelley Crumpler 979-213-3783
NurseCrumpler@gmail.com

T1x 29 years, endocrine nurse and diabetes educator x 15 years


You take people up like this who offer help. Im very proud of being self sustained but this disease will humble the strongest. Take my word that all help is invaluable.
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crbongos
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2:13p, 5/23/21
AG
If anything type 1 and 2 are very different. Make sure you know the difference. You can't get advise from a type 2 and it work for a type 1. Kelly and dr Crumpler will give best info bc they themselves are diabetics. They don't take insurance thou Deff worth the price thou. Find all support you can for both family and child. Every diabetic is different so what works for one might not work for the other. Don't give up. It's a learning process. It's a very frustrating disease that many time makes no since. That's normal. It's hard for me as a type 1. I react bad to any carb any sugar and any high fat food. I must limit my carbs.
CRBongo
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crbongos
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2:16p, 5/23/21
AG
Also Kelly sometimes hard to get ahold of. Just keep trying.
CRBongo
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EMY92
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4:45p, 5/23/21
AG
I was diagnosed with T1 over 36 years ago.

A lot has changed for the better. As soon as possible, try to get on an insulin pump, I got on one 17 years ago and it changed my life.

Also, nothing is ever normal. You will think everything is under control, then everything goes off. It's just part of it. Mood, stress, illness, medications can all affect BGs. I've been on prednisone after my dog rubbed poison ivy on me, it has been a struggle for the past week, but it won't last.
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EBrazosAg
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In reply to NurseC • 4:51p, 5/23/21
AG
Wasn't trashing anyone. But I have several hundred patients with diabetes over a career of more than 20 years. So I'm probably qualified to have a opinion and make recommendations.
No material on this site is intended to be a substitute for professional medical advice, diagnosis or treatment. See full Medical Disclaimer.
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NurseC
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In reply to EBrazosAg • 7:09p, 5/23/21
AG
He's asking for help with the local T1 community and support groups. Not looking for a new Endo. I'm sure he appreciates the positive way you spun your years of diabetes patient assistance to help his daughter.
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KaneIsAble
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8:09p, 5/23/21
AG
The man is looking for some help; why does it always turn into a d&$k measurement contest on Texags?
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histag10
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In reply to KaneIsAble • 8:29p, 5/23/21
AG
KaneIsAble said:
The man is looking for some help; why does it always turn into a d&$k measurement contest on Texags?


Right? This thread got really weird (and slightly unprofessional/rude)... But it's at least educational for those of us shopping for a new endo
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studioone
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In reply to histag10 • 4:25a, 5/24/21
histag10 said:



Right? This thread got really weird (and slightly unprofessional/rude)...


My threads always get really weird... Its the way I roll... but never rude..


We're still trying to adjust to being home from the Hospital... and we have 5 days of school left... Wife had a visit with the school nurse on Friday, so thats good.

We have a couple of visits to Texas Children's Hospital to do in June for followups, to actually tell us if we have diabetes...

We know we do, and was diagnosed by the kids GP at Scott n white.. but when I asked about it at TCH, they said they were still doing tests to confirm TID.. Might be T2D... but they wont tell us anything until the next visit... bizzar, frustrating, and a bit mean if you ask me... they could at least just call or email without us having to drive all the way there just to tell us what we have... DOnt mind going for other reasons, but they could just confirm T1 or T2..

oh well...


d
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cavscout96
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In reply to EMY92 • 6:59a, 5/24/21
AG
EMY92 said:
I was diagnosed with T1 over 36 years ago.

A lot has changed for the better. As soon as possible, try to get on an insulin pump, I got on one 17 years ago and it changed my life.

Also, nothing is ever normal. You will think everything is under control, then everything goes off. It's just part of it. Mood, stress, illness, medications can all affect BGs. I've been on prednisone after my dog rubbed poison ivy on me, it has been a struggle for the past week, but it won't last.



Pump is an absolute game changer. The user has to have the wherewithall to maximize it, but just the basic functions make it extremely helpful, even/especially for kids.

The while thing is a learning curve, but it is manageable. After a while, it becomes second nature.

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cavscout96
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7:08a, 5/24/21
AG
One other thing as it relates to your daughter.

Obviously I don't know y'all, but one thing we do is try to be as "normal" as possible. We don't look at this as a disability or think of it in terms of what we CAN'T do. Instead, we approach it as a routine, or what do we have to do to be able to participate in this or that experience, or activity or even eat this or than food.

IMO it's critical for the healthy attitude/outlook of parents and kids to not get overwhelmed and look for ways to stay "normal."

This is one of the places the pump shines. It allows detailed management and tighter controls in turn, you have much increased flexibility.

Hope some of this is helpful.

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iisanaggie
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11:17a, 5/24/21
AG
First, I am sorry that you are having to take this journey with your child. I am not diabetic, but my best friend growing up was T1 and my kids have had friends who are. My advice is to find some families that you trust and teach them how to be able to care for your child in your absence. The invention of pumps and apps has made this much easier. This will allow you to feel more comfortable letting your child go to birthday parties, school events, etc. I learned how to check blood sugar, give injections, give a glucagon shot, etc. I was always in regular contact with the parents, but them knowing that I could handle things made them more comfortable.
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EMY92
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6:12p, 5/24/21
AG
I'm waiting for the Medtronic 780 pump to be released. It was delayed due to the pandemic. It will automatically do correction boluses.

I currently have the 670, it's pretty good, but I'm actually able to get better A1c's in manual. It helps that I had a manual pump for many years.

You can get the 770 now and a software update will upgrade it to a 780.

No, I do not work for Medtronic, but I have been very happy with them, except for the last pump ordering experience, for 17 years.
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KaneIsAble
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In reply to EMY92 • 7:53p, 5/24/21
AG
Tandems Control IQ will too with Dexcoms help.
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Rasslin Cheesehead
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8:31p, 5/25/21
AG
https://theeagle.com/brazos360/terry-and-nancy-cadle-training-dogs-for-families-in-need/article_6f45582a-8e57-11eb-b1a9-c7c5250b2a6f.html

Darrin,

Sorry to hear about your daughter condition. I know the family in the above article. They are really passionate about helping families with your daughters condition. Check it out. They're good people.
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EMY92
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6:34a, 5/27/21
AG
If you do use the continuous glucose monitoring system, order some TacAway. It's an adhesive remover. The stuff is awesome. I use it to unstick the tape from my skin and to move any adhesive from the transmitter (that part gets reused).

The tape that Medtronic uses for the sensors is strong enough to remove skin. I tried other stuff first, but a Medtronic trainer suggested I try this and she was right.
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