Does anyone know of any research studies for preserving cells in newly diagnosed pts (under the age of 4)?

Nicole - posted on 11/15/2008 ( 5 moms have responded )

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I have a 3 1/2 old boy who was diagnosed back in May. The doctor's say he's in a strong "honeymoon" phase and has actually needed NO insulin since first being diagnosed in the hospital. Since my story is a little different I’ll explain the new thought on how to treat him.

Before they would tell you to watch his BS and they're wasn't a whole lot they could do till his pancreas shut down (where he needed insulin) Now they believe by giving him very small amounts of long acting or short acting they can prolong the process of the pancreases from shutting down. Helping the pancreas not to have to work so hard and hopefully soon try to reverse it all together. I'm DESPERTALY trying to find a research study to put him in!!! I myself am a type I for almost 25 years. I’m pretty familiar with it and that's why we caught it SO early. With his FIRST signs I checked his glucose and it read 300. and he had keytones.

I've spoke to his pediatric endo. , JDRF, our Seattle children’s hospital, All over the web and have found nothing on research for HIS AGE on PRESERVING CELLS in newly diagnosed patients. . It's painful because I myself have it and I feel like my hands are tied I’m just sitting and waiting. Waiting for a virus to come along and “trigger it", or for it to just stop all together. The weird thing is I know...I KNOW.. if I could find the right research I believe he could make a huge difference in helping to find a cure. (Or at least a step closer) Due to our strong family hx of auto-immune disease, myself being one. HE IS SUCH AN UNIQUE CASE. The children's doctors are even stumped! And have all told me themselves how unique this is.

So if any of you out there see anything on the web or hear anything, please let me know!! Or have any ideas on places to look for research I would love it!! Right now (for the past 6 months) he's not on any insulin and I want to keep it that way!!!

Thank you and I look forward to talking and sharing stories!!

Nicole

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Angela - posted on 12/04/2009

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Hi Nicole,



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Kelly (Ehrhardt) - posted on 08/02/2009

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Yes the ADA (American Diabetes Association) does have research going on for newly diagnosed patients (within 90 days, I think) that is about the beta-cell regenration. Maybe if you go to there website you will find more information about it. I know they do it down here in TX at Baylor Medical Center.

Michelle - posted on 11/20/2008

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I believe their are similar research studies at the Barbara Davis Center in Denver but maybe just for adults. My husband was approached about the study in January. It might be worthwhile to contact the BDC if you haven't already. www.barbaradaviscenter.org

Susan - posted on 11/20/2008

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I don't know if this will help, but this is another form of diabetes that was brought to my attention just yesterday! Itis called monogenic diabetes and is not actually an auto-immune disorder. I don't know if it actually applies to your son, but I thought it is definitely worth telling you about! You can read about it at the following link: http://www.monogenicdiabetes.org/



I was pretty blown away when I read it. Unfortunately, I don't think it applies to my daughter, but it was extremely interesting to say the least!



The other link is a story that was on NBC news with Brian Williams a few days ago. You can watch the broadcast at: http://www.msnbc.msn.com/id/3032619/#277...



Good luck!

Carole - posted on 11/19/2008

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Try this:

http://www.bsc.gwu.edu/bsc/studies/trial...

I am not sure what you are looking for, or if this fits, but it was what I have found. My husband and 3 year old have type 1, so we are in a similiar situation. Chase has been honeymooning for 9 months now. 5 shots a day, but only 6-8 units of insulin. Our doctor feels that he is not on enough insulin to move him to a pump. Unlike you we are very anxious for the honeymoon to end so that we can have the flexibilty and convenience that the pump offers.

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