Wendi
  • Female
  • Rye, NY
  • United States
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clinical trials to preserve beta cells

Started this discussion. Last reply by Wendi Sep 25, 2009. 11 Replies

 

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Wendi replied to Wendi's discussion 'clinical trials to preserve beta cells'
"Thanks Scott, I read it. I think for my daughter I am relieved we didn't do it. There is so much in the pipeline and there is so much we don't know about longer term adverse effects...."
Sep 25, 2009
MelissaBL left a comment for Wendi
"Hey, Wendi. Noticed you haven't signed on in much lately and that you're still using the default "welcome - upload your photo" hand image as your profile image. If you'd like to add some kind of picture to be your profile…"
Sep 24, 2009
Scott Strumello replied to Wendi's discussion 'clinical trials to preserve beta cells'
"I have attached the initial clinical trial results for the drug teplizumab, which is the subject of the Protege study. Be aware that while it sounds very promising, it is not without adverse events. For example, in the attached journal entry, the…"
Sep 24, 2009
Wendi replied to PaulG's discussion 'Tech talk: New PDM and Mac users' in the group Omnipod Users
"I don't have an omnipod for my daughter, but am obsessed with it and follow all your guys discussions here, you have a great, brigt, supportive group. fyi, we have a minimed paradigm, I had to buy a cheap pc to run her software, it is also not…"
Jun 23, 2009
Wendi replied to Amanda's discussion 'Site Irritation' in the group Omnipod Users
"Tony started a similar discussion "pod change before 72 hrs" check that one, it's on page 2. it seems other people are having the same problem. they have different theories... hope that helps."
May 31, 2009
Sara Noble replied to Wendi's discussion 'clinical trials to preserve beta cells'
"Hi Wendi, I would love for you to e-mail me and be glad to answer any questions you might have about my experience. As for the side effects, here's a brief description of what I experienced. Note I did not begin experiencing any side effects…"
May 29, 2009
Wendi replied to Wendi's discussion 'clinical trials to preserve beta cells'
"Hi Sara, I am now looking at the DELAY study at Yale. It is Teplizumab for recent onset, 4-12 months. it is 50/50 that you get the placebo. It is at Yale, 1 hour away. It is for my 11 year old daughter. so the scheduling is somewhat more…"
May 27, 2009
Sara Noble replied to Wendi's discussion 'clinical trials to preserve beta cells'
"I was diagnosed last December at age 27 and made the decision to participate in the Protege study (http://www.protegediabetes.org/), a clinical trial of the monoclonal antibody teplizumab. I am not familiar with abate, but based on your question and…"
May 26, 2009
Wendi replied to Natalie's discussion 'Natural Supplements' in the group parents of kids with Type 1
"I have been looking into this. I think that Chromium, Magnesium and vitamin D3 are important. Someone told me about insul-opt. It has a huge list of ingredients. I have looked each one up and I am not so sure. they sound great on the insul-opt…"
May 19, 2009
Wendi replied to Wendi's discussion 'clinical trials to preserve beta cells'
"where do you live and how long since diagnosis? maybe you can try a recent onset trial. I think though that you could be one of the 1/3 of the patients that receive a placebo...."
May 18, 2009
Marnie replied to Wendi's discussion 'clinical trials to preserve beta cells'
"I also tried to get in and missed the window by weeks. I truly wish I could have been apart of it"
May 18, 2009
Wendi replied to Wendi's discussion 'clinical trials to preserve beta cells'
"Thank you for the website. It's all very interesting. some of it seems so promising. Our center has the GAD trial but my daughter was too young. By the time it opens up to her age, she will be past eligibility for new onset. but we will try the…"
May 18, 2009
ger replied to Wendi's discussion 'clinical trials to preserve beta cells'
"Here's the website: http://cureresearch4type1diabetes.blogspot.com/ Faustman is very promising but it's a bit behind other ongoing trials that have pretty solid results."
May 17, 2009
Wendi replied to Wendi's discussion 'clinical trials to preserve beta cells'
"Thank You. I tried to go to that website, but it has nothing about diabetes on it? My daughter is 11, she weighs 90 lbs. I sent them an email (Herold) he sent one back, we will see, it's a recent onset, not new onset, so she might qualify. have…"
May 17, 2009
Jan replied to Wendi's discussion 'clinical trials to preserve beta cells'
"Check out joshualevy.com "Cures for Diabetes". He lists all the trials, what phase they are in, and has links to the research papers. You will be able to go to one web site and get tons of information. Good luck. We did try to get my niece…"
May 16, 2009
Wendi updated their profile
May 15, 2009

Profile Information

Date diagnosed
February 5, 2009
Type of treatment/devices you use
Pump
What pump model do you use, if any?
minimed paradigm 522

Wendi's Blog

thinking about getting an omnipod for my daughter.

Posted on March 13, 2009 at 2:04pm 1 Comment

I have heard that there have been "bad pods" around.
Has anyone had this? What do they mean by bad?

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At 8:34pm on September 24, 2009, MelissaBL said…
Hey, Wendi. Noticed you haven't signed on in much lately and that you're still using the default "welcome - upload your photo" hand image as your profile image. If you'd like to add some kind of picture to be your profile photo, look for the "Settings" link in the upper right portion of each page (next to the little silver gears). The very first option in Settings will walk you through changing your profile image. Good luck!
At 1:17pm on March 14, 2009, Kristin said…
I think that it is a good idea to check out pumps right away! Learning to use the pump well does require time and energy, but it is a worthwhile investment for the flexibility that it will give your daughter (and you)!

I would HIGHLY recommend checking out the Cozmo pump. That was the first pump that I used and I really like it. I think that it is the most kid-friendly pump. Many doctors only work with Minimed because it is the biggest pump provider on the market. I use the Minimed now and I like it, but I see some real advantages in the Cozmo pump for kids (more user friendly, more alarms, more fool-proof in my opinion). You can contact a Cozmo representative directly and they will usually come to your house (or doctor's office) and show you the pump. You could also contact the Animas pump company.

Does the doctor want your daughter to start on a continuous glucose monitor as well? That is one advantage on the Minimed pump-- it already has an integrated continuous blood glucose monitor.

In my opinion, it is not important that your doctor knows how to re-program the pump. Your doctor will offer advice, but you need to learn how to program everything on the pump. So I would not see it as a problem if your daughter uses a different pump than the doctor usually uses. I suggest researching all your options. I have heard that some LOVE the Omnipod and others really didn't like it. But you should have a chance to see all and choose!!
At 1:03am on March 14, 2009, Kristin said…
Welcome to TuDiabetes Wendi! Glad that you found our community!
 
 
 

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