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Wednesday 31 August 2016

YIMBY 2: Band Camp


Last week I wrote about how comforted I was that my daughter attended a preschool which was, essentially, in our backyard.  Similarly comforting, despite a ten year lapse in time, was that last week's marching band camp was located adjacent to our (subsequent) backyard.  We moved a few years ago, to a house with my daughter's then-elementary school behind it.  Our realtor contacted us at the start of middle school to make sure we didn't want to move again but, as it turned out, it came in handy that we stayed put.

Band camp is usually held at the high school (a whole block and a half away from our house) but due to some construction in the building and on its fields, the week of camp was held at the elementary school behind our house.  The trek is a little longer than to preschool since our current  backyard is surrounded by an 8 foot fence. Lacking pole vaulting skills, my daughter has to walk all the way around the corner to get to the school.  But it was still incredibly convenient, and comforting.

My daughter is obviously much more independent than she was in preschool, or even during the couple of years she attended this backyard elementary school as a 3rd and 4th grader. Yet marching band camp is a long, intense week in our town.  It runs from 9-9 every day, except for an hour stop home for dinner.  That's a long stretch of time to handle all things diabetes by herself; especially factoring in heat, exercise and the stress which comes with doing something new.  As I wrote about a few weeks ago, the band directors are glucagon trained and have been familiarized with how to handle emergencies.  But there's no nurse, nobody who's looking out especially for her diabetes, nobody to turn to if she needs to double-check an insulin dose and nobody to sit with her if she's low.

I could hear the band all day from my dining room table office set-up.  This part was not always a perk. The brass section practiced the same 4 measure phrase for an hour and a half one morning while standing just on the other side of the afore-mentioned fence. But it was kind of neat to spy on the evening full show rehearsals on the back field.  No matter the entertainment value, it was nice to know that, save an hour here or there for other commitments, I was next door and able to be her diabetes support system if she needed me.

In the end, it mirrored the preschool experience.  Her proximity benefitted her just once, when she was able to make a quick stop home during the lunch break to swap out an almost-empty insulin cartridge from her pump.  Beyond that, it was comforting to know how little I'd been needed after all.






via Adventures in Diabetes Parenting

Recent Lab tests, X-rays, and Ultra Sound Results and Misdiagnosis

Good afternoon blog readers! I have not had any new posts in a while and thought I would do a revealing post as to why.

Approximately two and one half months ago, I started having some bouts of in-explainable severe vertigo and nausea. I am talking about three of everything in my vision spinning counter clockwise and unable to tell if I was standing, laying down, upside down etc.

At first it would come and go and then got more frequent and unpredictable to the point I was useless and bewildered. I went to a local medical center and after having several tests run, they determined that I had some blockage in the Sub-Clavian arteries in my neck and if the dizzyness came back, I should go to a hospital emergency room ASAP.

A couple of days later, I had another severe bout of vertigo and ended up in a local emergency room for 5 hours. I had blood drawn, more ultra-sound and several other tests run. The conclusion was that I had 70-90% blockage in my left sub-clavian artery and 50% plus in my right sub-clavian artery. I was given a Stat Urgent send off to see a cardiologist and he in turn put me in front of a vascular surgeon a couple of weeks later. I was told that I was in danger of a stoke and to take it easy.

The cardiologist put me on a blood thinner and baby aspirin along with 40 mg of Crestor. In other words I immediately got put on 2 prescription drugs and baby aspirin. I have been on lower dose statin drugs before and could never tolerate them ending up with muscle aches and joint pains etc.

I have to mention that the 40mg of Crestor came out to $118.00 a pop to fill since Crestor name brand was what was prescribed. To add insult to injury a low dose BP med I have been on for years (Felodipine) was changed to a tier 3 drug and instead of costing $6 a refill went to $89 per refill.

I left there bewildered and thinking that I was going to need surgery and started reading everything I could find on sub-clavian artery surgery and stents (vs.) cutting the artery out and replacing part of it etc. etc.

I have mentioned before that my wife and I do ministry work in Ireland and have for years. The day before my scheduled vascular surgeon appt, I received a Word of Knowledge, Word of Prophecy from one of our prayer partners in Ireland by email.

She indicated she had been praying for me and that I was to read chapter 37 of Isaiah (regarding the Assyrian King's attacking different groups and his messenger being sent to see Hezzikaiah leader of the Jews to let him know he should surrender otherwise be attacked by the Assyrian army the next day. He told the messenger that God would protect them from the Assyrians. The messenger replied, "You mean like he protected all these other people we have already conquered?".

Hezzikiah responded, "NO, their God's were made of wood and stone but we SERVE the one true God and he will protect us".

The Messenger said, OK, "You have had your chance to surrender".

That night the Angel of the Lord went to the Assyrian camp and slew 185,000 Assyrian soldiers. The Assyrian king fled or as we said as a Kid, "He exited stage left in a hurry".

That was very powerful to me and I cried when I read the chapter. Our prayer partner also told me that God strongly spoke to her that,  "I was to REBUKE whatever the doctors had told me THUS FAR.

My heart jumped in my chest that God would have a very powerful message like that sent to me and I met with the vascular surgeon the next day and his expert opinion after examining all the tests was that the diagnosis I was given was totally 100% wrong. My right sub-clavian artery is 20% blocked at worst and the left artery was 40-50% at worst near my collar bone and the rest was 0-20% which did not pose a threat. In addition he told me that the chance of having a stroke from a sub-clavian artery is statistically ZERO.

THANK YOU LORD FOR YOUR MERCY AND YOUR WORD'S OF WISDOM AND KNOWLEDGE.

Now what?

I Received another word of knowledge from another prayer partner in Ireland the day before my ENT appointment. The word given was, "That I would being to rapidly improve physically and be restored quickly"

The dizzyness, vertigo problem had not yet been solved except the surgeon told me to see an ENT (Ear, nose, throat specialist) as he felt if might be an inner ear positional problem and had nothing to do with my heart or arteries at all.

I went to see a local ENT who put me on a diuretic and mclizine as needed for vertigo. From my first day on the diuretic, my problem with vertigo stopped  It was diagnosed as Menieres syndrome or disease). Turns out I have some excess water in my right ear cochlear bone which was the source of my trouble.

SINCE the misdiagnosis, I now replaced the Felodipine and the Crestor with two lower dose generic drugs and am back to feeling great again. It didn't hurt my feelings that 2 of the meds which were $207 per refill are now generic and a lower dose and only $6 for 90 day supply.

Isn't God Great?

God Bless and have a GREAT Day.

Dan





via Diabetescureorcontrol

How AADE 2016 Got Its Groove On (with Product News!)

Sunday 28 August 2016

Ladarixin Starts a Phase-II? Clinical Trial

You'll notice that the title of this blog refers to a "Phase-II?" trial, rather than the more usual "Phase-II"  trial.  That's because I'm experimenting with new terminology.

Researchers usually call a trial "Phase-II" because it is larger than a Phase-I trial, and because it is focused on effectiveness while Phase-I trials are focused on safety.  However, I have long been frustrated by two different types of Phase-II trials.  Some Phase-II trials are run after a Phase-I trial. Generally, there was good news from the Phase-I trial, so it is reasonable to be hopeful about the follow on trial.  However, other Phase-II trials are run on drugs which have already gone through safety testing for another disease.  These trials are also called "Phase-II" because the treatment has already been tested for safety.  However these treatments have never been tested for type-1 diabetes, so they are much less likely to be successful.

So there are Phase-II trials for treatments that have already shown some success in Phase-I trials, and then there are Phase-II trials for treatments which have never been tested on type-1 diabetes, but they both have the same name.  I don't like that.  So, I'm going to refer to these trials by different names.

Trials run after a Phase-I trial will be called Phase-II.  Trials that are the right size for a Phase-II trial, but are being run on people with type-1 diabetes for the first time, will be called Phase-II? trials.  You can think of the question mark as meaning "no previous type-1 results".

Ladarixin Starts a Phase-II? Clinical Trial

Ladarixin targets two specific immune system chemicals: IL-8a and IL-8b. The idea behind this trial is that suppressing this part of the immune system will stop the autoimmune attack which causes type-1 diabetes.

Ladarixin has previously been tested for several conditions unrelated to type-1 diabetes (Bullous Pemphigoid, Malignant Melanoma, and spinal cord injuries) but did not show promise in treating any of them.  Adis Insight (a drug database) claims that a phase-I trial is underway in Italy, but I cannot find any official record of it, nor any results.  (But European clinical trial registries often don't include Phase-I trials.)  So for this posting, I'm assuming there is no phase-I trial.  I'll update it if I find out about such a trial.

Ladarixin is also sometimes known as DF-2156A, DF-2156Y, or Meraxin.  It is being developed by the Italian pharmaceutical company Dompé Farmaceutici.

The Study

The study will include 72 honeymooners (within 100 days of diagnosis).  Two thirds will get the treatment and one third will get a placebo. The treatment is a daily pill, which people will take for two weeks, and then two weeks off with the cycle repeating three times.  People will be followed for a year afterwards.  The study started in June 2016 and they hope to finish by November 2018.

They are currently recruiting in two location in Italy:
  • Internal Medicine - Diabetes and Endocrinology Unit, San Raffaele Hospital Milan
    Contact: Emanuele BOSI, MD       bosi.emanuele@hsr.it   
  • Unità Operativa Complessa di Endocrinologia e Dialettologia. Università Campus Bio-Medico di Roma
    Contact: Paolo POZZILLI, MD       p.pozzilli@unicampus.it   
They hope to start recruiting in Belgium and more sites in Italy.

Discussion

Needless to say, Ladarixin prevents and cures type-1 diabetes in mice, and you can read that study here:  http://ift.tt/2btC4Sw

I'm not aware of any previous work suggesting that IL-8 is involved in type-1 diabetes, so this is a unique line of research.

Note that both trial registry entries refer to the same trial:
US Clincal Trial Registry: http://ift.tt/2bvCxRs
EU Clinical Trial Registry: http://ift.tt/2btCPLs
Company: http://www.dompe.com/


Joshua Levy
http://ift.tt/29DuN3o
publicjoshualevy at gmail dot com
All the views expressed here are those of Joshua Levy, and nothing here is official JDRF or JDCA news, views, policies or opinions. My daughter has type-1 diabetes and participates in clinical trials, which might be discussed here. My blog contains a more complete non-conflict of interest statement. Thanks to everyone who helps with the blog.


via Cure Research

Sunday Funnies: Diabetes Overload?

Monday 22 August 2016

YIMBY


We're just a couple of weeks away from the start of high school, which I don't want to think about. So I'm reminiscing about preschool:

We chose my daughter's preschool because it was a high quality one, recommended by neighbors.  We liked that the day was weighted heavily towards finger painting, music and play but included just enough minutes of drawing letters and thinking about numbers to prepare the kids for kindergarten.  We chose it because the teachers we met on our visits were kind and looked at their students as unique individuals. We chose it because the director didn't freak out when I told her my child had diabetes. We chose it because when my daughter visited I had a terrible time getting her to leave, despite promising she'd be coming back regularly starting the next week. 

The school had one more selling point, though, especially valuable to a mom of a kid with diabetes who had never been left with anyone but grandma.  This preschool (and the church in which it was housed) was in our back yard.  There are lots of things we don't want in our back yard, but for preschool, we were definitely in the YIMBY (yes in my back yard) camp. We walked out the back door, through the yard and entered the door of school. I was quite literally a stone's throw away should a need arise.  I could (in my imagination at least) mix the glucagon while running through the yard, prepared to stab my daughter's leg as I ran into the building.  I could arrive at a moment's notice bearing vats of water, prepared to calculate a bolus to correct a high.  Instead, this convenience turned out to be mostly for my own peace of mind: I got called to the school twice because she wanted me to be with her while she sat out low blood sugars.  Otherwise she was fine. 

I probably would have chosen this preschool even if it had been across town, but I'm glad I didn't have to.  It was scary then to put her into the care of strangers for 3 hours a day. It was scary for her to have to ask strangers for help if she didn't feel right. It was scary to imagine what could happen if nobody (including her) noticed she was low and she got to a point where she needed urgent help.  It was comforting to all of us (including the school staff) to know I was around if needed.  And it was comforting to me as I sent her off to kindergarten, to know how little I'd been needed after all.




via Adventures in Diabetes Parenting

New T1D Booklets Perfect for Back to School (with Giveaway!)

Wednesday 10 August 2016

What's That?


Little kid (pointing at Dexcom receiver on my daughter's belly): What's that?

My Kid: I wear it to keep me healthy!

(Little kid swims away/ continues eating popsicle/ asks about something completely different)

This conversation has repeated itself several times this summer at our town pool.  These are usually kids who know my daughter's friends (neighbors, kids from camps they've volunteered at, relatives). These kids enjoy the opportunity to hang out with the 'big kids' for a while in the water or on the volleyball court. My daughter chose her stock answer at the beginning of the summer and so far it's worked every time.

These conversations are in significant contrast to those she's had this summer with new peer and adult acquaintances.  These people want (or the case of the band director, for example, need) more complete answers to what the devices she wears and uses are, and how they work.

Through middle school, her social circle remained fairly static.  As she starts to spend more time with the band kids, and with the people her middle school friends are collecting as they start new activities and endeavors, the explaining has begun again and the conversations have become longer.  Recently examples include, 'why do you still have to poke your finger if you wear the dexcom?' and my daughter's personal favorite, 'what's your blood sugar usually?'  These are a little harder to answer but they're thoughtful questions. 

I'm glad her friends are interested in and concerned about her diabetes.  High school means she'll be spending lots more time with her friends.  The more they know, the better.

Though the conversation is certainly simpler with a 4 year old.





via Adventures in Diabetes Parenting

Global Diabetes: Talking with the Only Endo in Bermuda

Friday 5 August 2016

Atorvastatin (Lipitor) Unsuccessfully Completes a second Phase-II Trial


Atrovastatin (much better known as Lipitor) has now finished it's second phase-II trial.  The previous trial was unsuccessful, and this trial is unsuccessful, so I think that Lipitor is probably done as a potential cure for type-1 diabetes.  You can read my previous blogging here:
http://ift.tt/2aHYU60

This clinical trial started recruiting patients in July 2007, finished collecting data in July 2011, and finished completely in July 2013.  It's now been 3 years since that date, and I cannot find a publication reporting on the results of this trial.  In my experience trials with successful results are usually published within a year of completion, while those which are unsuccessful often languish for years, unpublished.

Clinical Trial Record: http://ift.tt/2aVvwN2

The previous Lipitor paper is here:
http://ift.tt/2aHXLLN
Conclusion from this previous paper:
Atorvastatin treatment did not significantly preserve beta cell function although there may have been a slower decline of beta-cell function which merits further study.
Discussion

The problem of researchers not publishing results from unsuccessful clinical trials has been getting some press recently.  For example:

Joshua Levy
http://ift.tt/29DuN3o
publicjoshualevy at gmail dot com
All the views expressed here are those of Joshua Levy, and nothing here is official JDRF, JDCA, or Tidepool news, views, policies or opinions. My daughter has type-1 diabetes and participates in clinical trials, which might be discussed here. My blog contains a more complete non-conflict of interest statement. Thanks to everyone who helps with the blog.


via Cure Research

More Advocacy Happening on #DiabetesAccessMatters

Wednesday 3 August 2016

Marching Band


Our meeting a couple of weeks ago with the new school nurse also included the band director. Marching band is a serious endeavor in our district. There have been weekly 3 hour rehearsals since June. Band camp week in August consists of twelve hour days at the high school. Our fall weekends are spoken for.  There will be weeks when my daughter spends more time with the band and its staff than she does with us, her beloved (and diabetes-familiar) family.

She's the first kid with diabetes to be in the band, so this is new territory. Both the director and assistant director agreed to be glucagon trained, which is great.  More important to me, though, was to teach and then strategize so that they will never have to use that training.  So we talked about diabetes.  We talked about how steady exercise (like walking and presumably marching) can lead to low blood sugar. We talked about the importance of treating a low blood sugar as soon as it's noticed.  We talked about the importance of checking blood sugar obsessively on days of important events (like band competitions) so that my daughter can use every tool at hand to aim for a in-range number at show-time.  We talked about the importance of keeping diabetes supplies accessible at all times.

The last time we had to explain and discuss diabetes in this kind of detail was at our initial 504 plan meeting at the middle school . The goal of both meetings was, of course, to get the staff to agree to allow my daughter to do what she needed to do to take care of her diabetes.  The tactic we used both time was conversation and education.  More effective than making a list of demands, I think, is to talk about life with diabetes: what a low blood sugar feels like, how it's treated, how we use the tools we have at hand to prevent diabetes emergencies, how good my kid is at taking care of her diabetes with a minimum of disruption, and how much bigger a disruption it would be if an oncoming low turned into a medical emergency.  This information, presented with a healthy dose of 'we've been doing this forever, and we know what we're doing,' seems to slowly but effectively shuffle people's preconceptions about how things should be done and lead to building consensus on a mutually agreeable plan.

The conversation with the band director led to a game plan, to be fine-tuned as events start to unfold.  She will have her meter kit on the sidelines of all rehearsals.  While the director is strict about nobody leaving the lines for any reason during practice, my daughter has permission to slip away to check if the Dexcom alarms or she's feeling low. The band director will carry glucagon and a spare meter in the first aid bag which accompanies him onto the field. At performances she will check her blood sugar during the time just before they enter the field and then hand her kit to the director or a parent volunteer as they line up. The uniform jacket has a pocket in which she can keep a roll of glucose tabs to use in an on-field emergency. The lines of communication remain open and if we have any concerns, we'll bring them up. Ditto for the band director. We left feeling comfortable with the plan.

Next up, how wear the pump and dexcom with the uniform, how to survive a week of band camp in the August sun and how to balance the busy fall band season with the first semester of freshman year of high school...




via Adventures in Diabetes Parenting

Patient Voices Winner Randall Barker Advocates for Himself and Daughter with Diabetes