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Pediatric endocrinologist recommendation


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Just found out our 10 year old son has type 1 diabetes this weekend. We will be out of the hospital Monday and I am wanting to find an outstanding pediatric endocrinologist to work with anywhere from Austin to Dallas. Due to his age and I would to prefer to work with someone that see kids develop through their teenage years and into young adults.

 

We were very lucky we happened to be home when this occurred and were able to get him to dr, ER and to mclane children’s in no time.

 

Hugs your kids tight and always be their strongest advocate.

 

Thanks in advance

 

 

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Type 1 is a constant battle, I suffer from it.  There is a lots of exciting research in the cure area, and hopefully he will see it cured in his lifetime.  I've given my blood to the Faustman Lab in Boston, MA for their study of an old drug called BCG that has the potential to "turn off" the autoimmune response.

Until he's a teen you'll need to do a lot of the management for him - measuring his levels and so on.  Medtronic and the other major equipment manufacturers make temporarily attachable BG sensors (mine lasts 7 days) that can transmit his BG levels to an external device like a screen in your kitchen or app on your phone for you to review.  The schools are also pretty pro at handling this now, and he'll get nurse help to check during the day.  Having high BG is bad, but low is the worst.  Especially nighttime lows.  If he's lucky, once he adapts to being on insulin, he'll feel the lows coming on in advance: getting sweaty, feeling clammy, losing taste, etc.  If I go low in my sleep I usually wake up, but not always.  Sometimes I'll wake up and be in lala land until I correct.  Get some of those flavored glucose tablets and put them in his backpack and around the house - I'll pop 2-3 if I'm going low.

Talk to your endo but I recommend that he starts on multiple daily injections (MDI) and do that for at least 1-2 years before you jump to the insulin pump.  MDI is annoying but you'll learn much faster how to handle the insulin:carb ratios and what variables affect him the most.  For me, I need about 1/2 the insulin for the same amount of carbs for about 24 hrs after I work out.  I need about 2x the insulin for the same carbs if I'm feeling sick.  There's about 75 of those types of variables you'll need to learn through trial and error and they're different for everyone.  Once you know them, the pump makes life a breeze - BUT you've got a device now stuck to you 24 hrs a day, which isn't for everyone.

Last, consider diet.  It took me a LOOOONG time to get to where I'm at, because my initial endo's told me "yeah eat what you want but just make sure you cover your carbs with the right insulin."  WRONG!  Technically correct, but wrong.  Here's a better way to think about it IMO: Your boy is now allergic to carbs.  We wouldn't give a celiac gluten, we wouldn't give a lactose intolerant person milk.  You shouldn't give a T1D carbs, period.  Nudge him toward ketogenic eating and trust me your lives will be easier.  When you're eating the standard American diet you'll eat a lot of carbs - which means a lot of insulin...thus starts what I call "the rollercoaster."  BG goes up, up, up for carbs and you chase it down, down, down with insulin until OOPS you miscalculated the dosage, or OOPS it's the 3rd Tuesday of the month, or OOPS some other variable affected him and how 2 hrs later you've got a kid who is glassy eyed and incoherent and you're pouring OJ down his throat to get him back up.  The only path is to get off the rollercoaster by dramatically reducing the carbs, and the insulin along with it.  He can still eat birthday cake or have a beer when he's old enough.  It doesn't mean total denial but there is a lifestyle change that he and you will need to make to be successful.

Also get a glucagon kit for home and learn how to use it - it's for emergency lows.

Hit me up if you want to talk on PM or by phone, I've been at this awhile and actually thought about starting a support group for newly diagnosed T1Ds.  Happy to help...

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6 hours ago, Horn of Gabriel said:

Type 1 is a constant battle, I suffer from it.  There is a lots of exciting research in the cure area, and hopefully he will see it cured in his lifetime.  I've given my blood to the Faustman Lab in Boston, MA for their study of an old drug called BCG that has the potential to "turn off" the autoimmune response.

Until he's a teen you'll need to do a lot of the management for him - measuring his levels and so on.  Medtronic and the other major equipment manufacturers make temporarily attachable BG sensors (mine lasts 7 days) that can transmit his BG levels to an external device like a screen in your kitchen or app on your phone for you to review.  The schools are also pretty pro at handling this now, and he'll get nurse help to check during the day.  Having high BG is bad, but low is the worst.  Especially nighttime lows.  If he's lucky, once he adapts to being on insulin, he'll feel the lows coming on in advance: getting sweaty, feeling clammy, losing taste, etc.  If I go low in my sleep I usually wake up, but not always.  Sometimes I'll wake up and be in lala land until I correct.  Get some of those flavored glucose tablets and put them in his backpack and around the house - I'll pop 2-3 if I'm going low.

Talk to your endo but I recommend that he starts on multiple daily injections (MDI) and do that for at least 1-2 years before you jump to the insulin pump.  MDI is annoying but you'll learn much faster how to handle the insulin:carb ratios and what variables affect him the most.  For me, I need about 1/2 the insulin for the same amount of carbs for about 24 hrs after I work out.  I need about 2x the insulin for the same carbs if I'm feeling sick.  There's about 75 of those types of variables you'll need to learn through trial and error and they're different for everyone.  Once you know them, the pump makes life a breeze - BUT you've got a device now stuck to you 24 hrs a day, which isn't for everyone.

Last, consider diet.  It took me a LOOOONG time to get to where I'm at, because my initial endo's told me "yeah eat what you want but just make sure you cover your carbs with the right insulin."  WRONG!  Technically correct, but wrong.  Here's a better way to think about it IMO: Your boy is now allergic to carbs.  We wouldn't give a celiac gluten, we wouldn't give a lactose intolerant person milk.  You shouldn't give a T1D carbs, period.  Nudge him toward ketogenic eating and trust me your lives will be easier.  When you're eating the standard American diet you'll eat a lot of carbs - which means a lot of insulin...thus starts what I call "the rollercoaster."  BG goes up, up, up for carbs and you chase it down, down, down with insulin until OOPS you miscalculated the dosage, or OOPS it's the 3rd Tuesday of the month, or OOPS some other variable affected him and how 2 hrs later you've got a kid who is glassy eyed and incoherent and you're pouring OJ down his throat to get him back up.  The only path is to get off the rollercoaster by dramatically reducing the carbs, and the insulin along with it.  He can still eat birthday cake or have a beer when he's old enough.  It doesn't mean total denial but there is a lifestyle change that he and you will need to make to be successful.

Also get a glucagon kit for home and learn how to use it - it's for emergency lows.

Hit me up if you want to talk on PM or by phone, I've been at this awhile and actually thought about starting a support group for newly diagnosed T1Ds.  Happy to help...

Thank you, this is just what I needed.  I am processing an insane amount of information and everything you mentioned makes complete sense.  

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