Comments for My 2 Sweet Babies http://www.babieswithdiabetes.com A Journey with Neonatal Diabetes Sun, 08 Jan 2012 17:02:30 +0000 hourly 1 http://wordpress.org/?v=3.2.1 Comment on Andy’s Story, Part I: Initial Diagnosis by Tara Borin http://www.babieswithdiabetes.com/?p=64&cpage=1#comment-10241 Tara Borin Sun, 08 Jan 2012 17:02:30 +0000 http://www.babieswithdiabetes.com/?p=64#comment-10241 Hi Cristy, Thank you so much for sharing your story. Reading this post brings tears to my eyes. I'm so sorry it took the doctors so long to diagnose your son. My son went into DKA around 3 months of age, showing a lot of the same symptoms as your boy. It is so heartbreaking to see them in such a state, on a hospital bed, full of tubes and wires. Like you, I was relieved to hear the diagnosis of diabetes, because it's something known and treatable. Just a couple weeks ago, we got the results of his DNA test back, and learned that he has the KCNJ11 mutation. He is currently on an insulin pump, but the doctors would like to transition him, on a gradual, outpatient basis, to glyburide. He's been through so much in the past month and a bit (he's just 4 months old now), and my partner and I are hesitant to begin the transition. Do you find your son's diabetes much easier to manage now that he's on the oral meds? Has his quality of life improved? Did you notice any side effects? How is he doing now that he's been on the meds for a few years? If you're able to make a little time to get back to me, I'd really appreciate it. I'm feeling a bit alone in this, simply because his mutation is so rare. I hope you and your family are well, Tara Borin Hi Cristy,

Thank you so much for sharing your story. Reading this post brings tears to my eyes. I’m so sorry it took the doctors so long to diagnose your son. My son went into DKA around 3 months of age, showing a lot of the same symptoms as your boy. It is so heartbreaking to see them in such a state, on a hospital bed, full of tubes and wires. Like you, I was relieved to hear the diagnosis of diabetes, because it’s something known and treatable. Just a couple weeks ago, we got the results of his DNA test back, and learned that he has the KCNJ11 mutation. He is currently on an insulin pump, but the doctors would like to transition him, on a gradual, outpatient basis, to glyburide. He’s been through so much in the past month and a bit (he’s just 4 months old now), and my partner and I are hesitant to begin the transition. Do you find your son’s diabetes much easier to manage now that he’s on the oral meds? Has his quality of life improved? Did you notice any side effects? How is he doing now that he’s been on the meds for a few years?

If you’re able to make a little time to get back to me, I’d really appreciate it. I’m feeling a bit alone in this, simply because his mutation is so rare.

I hope you and your family are well,

Tara Borin

]]> Comment on Kicking the Bottle – Cold Turkey by Julie Adams http://www.babieswithdiabetes.com/?p=217&cpage=1#comment-8579 Julie Adams Mon, 03 Oct 2011 02:16:06 +0000 http://www.babieswithdiabetes.com/?p=217#comment-8579 I wondered how you were and if everything was okay. Id love an update to see how you all are doing xx. I wondered how you were and if everything was okay. Id love an update to see how you all are doing xx.

]]> Comment on New Tests, New Diagnoses, New Pills by Carolina Lahmann http://www.babieswithdiabetes.com/?p=209&cpage=1#comment-7448 Carolina Lahmann Tue, 09 Aug 2011 09:47:31 +0000 http://www.babieswithdiabetes.com/?p=209#comment-7448 Dear Christy, My name is Carolina Lahmann and I am a PhD student at the University of Oxford studying the V59M mutation. I was wondering if you would mind getting in contact with me as it would be really useful for me to get your insight on iDEND. Thank you very much! Dear Christy,

My name is Carolina Lahmann and I am a PhD student at the University of Oxford studying the V59M mutation. I was wondering if you would mind getting in contact with me as it would be really useful for me to get your insight on iDEND. Thank you very much!

]]> Comment on New Tests, New Diagnoses, New Pills by Christy Vacchio http://www.babieswithdiabetes.com/?p=209&cpage=1#comment-7262 Christy Vacchio Wed, 03 Aug 2011 12:06:25 +0000 http://www.babieswithdiabetes.com/?p=209#comment-7262 Thanks Lisa. I will put that on my list of questions for the doctor next time we see him. So far the Focalin has been OK, but I think we will wait until school starts to really see if it's working. I've tried so hard to get him to do "work activities" to no avail this summer. I'm momma and not teacher to him so I finally just gave up and let him play. Good luck at the endocrinologist with your daughter. Thanks Lisa. I will put that on my list of questions for the doctor next time we see him. So far the Focalin has been OK, but I think we will wait until school starts to really see if it’s working. I’ve tried so hard to get him to do “work activities” to no avail this summer. I’m momma and not teacher to him so I finally just gave up and let him play. Good luck at the endocrinologist with your daughter.

]]> Comment on New Tests, New Diagnoses, New Pills by Lisa http://www.babieswithdiabetes.com/?p=209&cpage=1#comment-7244 Lisa Wed, 03 Aug 2011 01:33:09 +0000 http://www.babieswithdiabetes.com/?p=209#comment-7244 Hi Christy- You may not have a choice, but the Daytrana patch has been the best ADHD medicine we have used. It is a slow release of a stimulant which gives a slow intake of the medicine and "let down" of the medicine. The other thing is it last all day!! So our son has it literally from 7 am - 9 pm. He can't function without it. :) We are going to see an endocrinologist for the first time for our daughter in 2 weeks. I am really hoping she can give us some answers! :) Warrior MAMA Lisa Hi Christy-

You may not have a choice, but the Daytrana patch has been the best ADHD medicine we have used. It is a slow release of a stimulant which gives a slow intake of the medicine and “let down” of the medicine.

The other thing is it last all day!! So our son has it literally from 7 am – 9 pm. He can’t function without it. :)

We are going to see an endocrinologist for the first time for our daughter in 2 weeks. I am really hoping she can give us some answers!

:)
Warrior MAMA Lisa

]]> Comment on New Tests, New Diagnoses, New Pills by Dana http://www.babieswithdiabetes.com/?p=209&cpage=1#comment-6911 Dana Sat, 23 Jul 2011 23:19:01 +0000 http://www.babieswithdiabetes.com/?p=209#comment-6911 Excellent information on your site Excellent information on your site

]]> Comment on Dexcom by Mary http://www.babieswithdiabetes.com/?p=214&cpage=1#comment-6610 Mary Fri, 15 Jul 2011 14:36:00 +0000 http://www.babieswithdiabetes.com/?p=214#comment-6610 My grandson, in England, had a CGM last year for 5 days. He has Kir6.2 mutation K170R. They want to do the test again, just to check his progress and the difference between the results. It was great, it showed that his medication kept him out of the lows overnight. He takes 0.5mg glibenclamide before breakfast, lunch & tea. He is 5 years old, at school and has calmed down substantially. His speech was very late but is nearly 100% now. He's is clumsy with poor fine motor skills but it's not really noticeable - only to his famly! My grandson, in England, had a CGM last year for 5 days. He has Kir6.2 mutation K170R. They want to do the test again, just to check his progress and the difference between the results.
It was great, it showed that his medication kept him out of the lows overnight. He takes 0.5mg glibenclamide before breakfast, lunch & tea. He is 5 years old, at school and has calmed down substantially. His speech was very late but is nearly 100% now. He’s is clumsy with poor fine motor skills but it’s not really noticeable – only to his famly!

]]> Comment on Why I Blog by Adeline Smisek http://www.babieswithdiabetes.com/?p=158&cpage=1#comment-6565 Adeline Smisek Wed, 13 Jul 2011 17:20:53 +0000 http://www.babieswithdiabetes.com/?p=158#comment-6565 Hi! I saw your blog at Bing <a href="http://www.babieswithdiabetes.com/?p=158" rel="nofollow">http://www.babieswithdiabetes.com/?p=158</a> and have learned a ton from it. Thanks very much for the helpful and detailed posts. Will be coming back Hi! I saw your blog at Bing http://www.babieswithdiabetes.com/?p=158 and have learned a ton from it. Thanks very much for the helpful and detailed posts. Will be coming back

]]> Comment on Why I Blog by Maynard Bohon http://www.babieswithdiabetes.com/?p=158&cpage=1#comment-6377 Maynard Bohon Fri, 08 Jul 2011 07:04:43 +0000 http://www.babieswithdiabetes.com/?p=158#comment-6377 Excellent information over again! Thanks! Excellent information over again! Thanks!

]]> Comment on Dexcom by Melissa http://www.babieswithdiabetes.com/?p=214&cpage=1#comment-6358 Melissa Thu, 07 Jul 2011 12:55:17 +0000 http://www.babieswithdiabetes.com/?p=214#comment-6358 I would be really interested to see the trends. Do you have a print out at all. I am hoping that we get to do a loan CGM later in the year. I know there is at one article about low GI foods and Neonatal diabetes treatment. But it is in Polish. I hope to write to the author sometime and find out a bit more about it. The HbA1C and it's non relationship to quick spikes worries me a little long term for Miss F. I would be really interested to see the trends. Do you have a print out at all.
I am hoping that we get to do a loan CGM later in the year.

I know there is at one article about low GI foods and Neonatal diabetes treatment. But it is in Polish. I hope to write to the author sometime and find out a bit more about it.
The HbA1C and it’s non relationship to quick spikes worries me a little long term for Miss F.

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