Thursday, November 12, 2009
Today was a good check in with Endo.. Labs day for the poor guy, he gets so upset, considering all he goes through in a day, I don't tell him to toughen up, I just cradle him in my arms and kiss his cheeck while they draw blood. It is over.. a quick lunch as a treat and back to school he goes. We did have a decent A1C which is good.. a 7.1.. they seem happy with that... and so I will be too.
The odd thing was after all that (diabetes care/dicussions) when we went for lunch.. for the first time (for me) I forgot to check his blood sugar... he had only taken a bite, but oddly.. for a second, I had the elated feeling like he didn't have diabetes.. odd I know... and I have not had this thought any time other than in my fantasies... but we checked and on with lunch we went... but odd. Humm.. .something for me to think about, how I let it go for a second... not that we ever can, but for that second.. it felt nice... I hope someday he gets to remember what it is like to not have to check before he eats, and not feel low after school and go to bed when he is tired, not lay there feeling the odd intuative things he feels about his body and the glucose and insulin rushing through it.
Happy World Diabetes day to all.. .we are off to celebrate it at a outreach program I helped out with for all kids to hang out at a kids museum with their families and sponsored food...a chance for them to still while bolusing and checking before they eat.. to feel ... normal... or atleast like most of the other kids in the room. No one looking.. wondering... what kind of cell phone needs blood drops??? (thank you vampire fetishes and electronic minds for that one)
Happy day, lets celebrate our friends and family who deal with this everyday!
Tuesday, September 1, 2009
I am happy to say, as per most 'non diabetic' (I was tempted to say 'normal' non-diabetic families) I had to spend most of my time settling my daughter in. I floated around the school per their request for the first 4 hours of the day, but Jared's numbers were fantastic, he ate, he played, he learned... I left) Well my daughter did need me at lunch to sit with her (and the team at the school had my sons' bolusing covered- so I did not need to be at his table as predicted) and holy cow.. I think we have success! I am an optimist, I am sooooo happy with the school and don't see any problems occurring. So a few hiccups, like the transferring of the diabetic kit (BG tester/Omnipod remote) from lunch to recess and back to to the class, but overall - a HUGE success!!!
I could not be happier....
I am thrilled with the principal and the teacher and so proud of my kids for hanging in there, and trusting us to find them a safe school.
Thursday, August 27, 2009
Dear parents of (my child's teachers) classroom,
We are writing to inform you that one of your children’s’ peers (Jared) has type 1 diabetes, it is a condition that affects his ability to absorb glucose (sugar) and turn it into energy.
So during the day, he does a few medical checks to make sure that he is in a healthy range and can study and play like the rest of the children. Treatment and maintenance involve finger pokes (in the classroom) and also some injections ‘medicine’ (occur outside the classroom), also he may have additional snacks during the day as a part of his treatment.
Jared needs for you and other people around him to know that he has diabetes. However, he should not be and does not want to be treated differently. Things we want you to be familiar with about diabetes are in this letter. Usually his diabetes is under good control, but he may have problems if his blood sugar gets too low or too high. To keep that from happening, we work with the doctors and teachers and have to do certain things.
It may help you to understand those things better if we tell you about diabetes. Please know that diabetes is not contagious. When a person eats a meal, the food is broken down into different substances, is absorbed, and enters the bloodstream. One of these substances is glucose, a sugar. The body cannot function without glucose. In turn, the body cannot use glucose without insulin which is produced by the pancreas. Jared’s pancreas, like that of other people with diabetes, doesn't produce insulin, so he has to take insulin shots every day. It's mainly insulin, exercise, food and stress that cause his blood sugar to go up or down. Sometimes he may have a low blood sugar or a hypoglycemic reaction.
Jared usually knows when his sugar is getting low, but sometimes he may not, so he counts on teachers and parents to recognize the signs.
If the low blood sugar persists too long, Jared may seem sleepy and withdrawn. If any of these symptoms occur, the teachers give him a sweetened drink, milk or orange juice to drink or something from his "Low blood sugar food stash in his locker." Food is used as his medicine in this case. Like any child, he may resist, but if you notice this behavior; please be firm and make sure he eats something with sugar. 15 minutes later he should be fine… if not however we (His parents) may get called to come in and check on him ~ Your children may notice “Jared’s mom comes to visit the class at lunch each day” This is to help with his care and treatment and is necessary at this point until he is older and can help with his own treatment.
We are writing not because this affects you or your child directly in any way, but we do ask that you save the packaging for snacks that may be brought for your child’s birthday celebration at school so we can correctly dose his insulin for his snack, so he can fit in with the rest of the kids in this situation. Also we realize since the glucose testing or ‘finger pokes’ happen in the class room your child may (or may not) ask questions. Hence this letter informing you of what is going on.
If you ever find Jared unconscious, anytime, and you cannot awake him, call 911 immediately.
We appreciate you taking the time to read this. If you or your kids have any questions, we are happy to explain further.
Jared is quite nervous to be making a change of schools period. For those who have not read back posts, Jared had been in private school for the past 2 years as he was diagnosed with Type 1 mere weeks before kindergarten started and the public school was not able to commit (yes, I know it is illegal) to his safety. (Jared himself commented as he walked out the door after his first meeting with the school nurse at the time saying " does my new school not like kids with diabetes?!?!?" (this crushes me to even remember that day). Regardless, we were not prepared to test their lack of readiness to prove a point that no child should be left behind! We took out a loan and sent him to a private school where the teachers all volunteered on weekends to go to the hospital to take classes on diabetes and treating children and administering injections (Which otherwise is illegal in public school in the state.
All that being said, a new school is always hard, a new school with a history (as much or as little as he remembers from two years ago) is hard for both of us. Since then, with the principal change and a new school nurse, we are willing to give this school a good chance. My daughter is also starting Kindergarten there and so they will have eachother at lunches and recess if need be (they are buddies - for the most part ;)
The hard part for me is that they want me to be concise with directions, which is somewhat easy.. there is routine for the most part.. it is the results of those routines which (As most of you know) vary. And if you don't get specific, and you are dealing with a kid... things can yoyo from bad to worse or low to high, or vice versa.
Today, when I meet the teacher, I hope she wants specifics, all these forms are SO non specific, and general... And when you are dealing with a school that has not had a diabetic child there in 20 years, general does not seem to apply! Experience makes things general, lack of .. in my humble opinion requires specifics.
So cross your fingers for us, and hope that the teacher who was 'assigned' my son is interested and wants to know more, and ... I am an optimist (most of the time ;) in time, she will know the specifics and be able to wrap herself around the specifics, until they become generality... or routine. This should be a great year, with new learnings for all!
Thursday, August 13, 2009
And although the endo had trouble with the reports, we both agreed to follow up with Omnipod to let them know that the new download method with the new remote has lost some of its valuable features, and we want to encourage them to bring it back! Hopefully hearing it from parents and medical professionals will encourage them to do this sooner than later!
We are back on the horse, and ready for school, and ready for a new day! Hopefully one that wakes up in range! ;)
Wednesday, August 12, 2009
1. I have my daughter coming with us - she is the little sister and can get board and irritable and distracting way to easily... and I have to plan to keep her busy and focus at the same time.. not to mention keeping Jared happy busy and not just 'hungry' because he is bored which always tend to happen with our pre lunch appts.
2. I switched to the new Omnipod remote and it now does not download 3 day reports with each individual day, it lists data.(90 days of it). and I am (apparently an old dog and not quite getting this new trick) I am not used to reading this format and feel that it was not 'warning' me (even thought I kind of knew) that he had been running high(ish) for a while. (I am not blaming the technology, I just realized that i used the old technology as a crutch and I can't shake the feeling)
3. I waited until the last second to send his reports to the Endo and am likely overwhelming her with my attempts to get her the important stuff .. which is not a good feeling.. and I hope she gets what she needs..
4. I am expecting a high A1C, and that for some reason makes me feel defeated..
I think I am dreading knowing that I have been letting him be a kid instead of completely obsessing, which I still do, but on a scaled back fashion... I am still feeding him right, and making the best choices possible, but somehow, was okay with overlooking that even though we were doing this, he was running high.. I did not seek help from the Endo immediately... I made a small tweak to his basal rates, but it did not help enough.. so I decided to wait to let the endo do the rest of the tweaking.
I think I am just venting... sorry, ahh I feel better already. Wish us luck!
Wednesday, July 15, 2009
Jared has written a book (with help from me and his gramma) and has been illustrated by his dad (and his sisters input ;) and based off of his own illustration ideas... His dream and wish was for every newly diagnosed child to have a copy of this book before they leave the hospital when they are newly diagnosed.
Yes, there are books out there, but we think his is different, and now the European market agreed. It sounds like every newly diagnosed child in Switzerland (atleast) will get this book before they go home.
The interesting part is it may be published in Europe before the states... I hope we can get this here in the States as well and in Canada.
I am so proud, I can't even finish writing this now... More details to come... and Yes, I will send a link to the website for the book soon :)
Wednesday, June 24, 2009
WASHINGTON - The youngest Jonas brother spent Tuesday lobbying Washington's power brokers on behalf of diabetes research - starting with the big guy, President Barack Obama.
Clad in a white oxford shirt with no tie, and a grey blazer with the sleeves pushed up, 16-year-old Nick Jonas stopped by the White House for a photo with the president and children who are living with diabetes.
It was his second time at the White House this year. He and brothers Joe and Kevin hung out there with Obama's daughters, Malia and Sasha, on the night of Obama's inauguration.
After the White House, Jonas headed off to Capitol Hill for a private meeting at the office of Senator Frank Lautenberg (D-N.J.) The teen idol and the senator made small talk about music while photographers snapped their pictures.
Roughly a dozen Capitol Hill interns waited quietly across the hall from Lautenberg's office for a glimpse of Jonas - no loud outbursts or attempts to sneak around security.
"I know some people can become star-struck and lose sight of what they're here for, but if Nick Jonas makes juvenile diabetes a cause that people are more aware of, it's worth it," said Ashley Woolos, an American University student and intern in the office of Representative Richard Neal (D-Mass.) "A younger face might bring younger fans and the fact that juvenile diabetes is not just an older persons' disease."
Nick Jonas publicly revealed that he has Type 1 diabetes while performing at a Diabetes Research Institute fundraiser in 2007. He is scheduled to testify on Wednesday before a Senate Homeland Security and Government Affairs Committee hearing on federal funding for diabetes research. Other witnesses include boxer Sugar Ray Leonard and actress Mary Tyler Moore.
The Jonas Bothers created the Change for the Children Foundation, which donates money to charities benefiting children who are disadvantaged or ill. They released their fourth CD, "Lines, Vines, and Trying Times," last week.
Tuesday, June 23, 2009
I gave him the before my bed check an hour before normal because I was tired, and his BG matched my age... That is WAY too low a number! It made me feel young.. and not in a good way.. that by no means could a number that low be good.. it was too low, too young... stop thinking I thought to myself and run and get him some quick glucose/ protein.
Thankfully, he was able to drink with a straw and was conscious... cups, and that low, don't usually work out too well in the middle of the nite.. although I have to say.. I can't say he has EVER been that low at night :( But he has had one time where he was too low to repond to anything but the glucose gel which was a nightmare too... (Yuck)
Well it scared me.. and so here I am ... he has since recovered, BG's are normal and I will try and go to bed soon.. but that fear kinda runs around in my body and mind for a while... not taking any intuition/instictual messages for granted.. no matter how tired I think I am. But still, freaks me right out!
Thank you for being here, for listening when the house is sleeping and my mind is racing.
Wednesday, June 17, 2009
We have come a long way... A really long way. Jared was only on injections for 6 months and as a hungry (Smart) boy who started avoiding carbs = avoiding shots... we needed another solution... Stage left - the Omnipod. For which we are thankful, 18 months of basal rates and easy eating. (Although I have to say that now - 2 years later - Jared does not fret to take an injection is his lower back/ upper butt if the pod fails or he needs some extra insulin.. but 10 injections a day was enough to make us all want to avoid carbs, although he never knew I felt the same way ;) But with the pod, it automated our 'log book' system... it does it all, which was a nice change too. (although I miss the part where Jared got a sheet full of different expression faces and stuck them in his log book to let us know how he was feeling) But I am okay to move on. Each day brings change in so many ways.
We have battled ketones, we have had late night scares, (day time scares), we have been really mad at Diabetes, and we have ultimately embraced this disease (for now) so we can move on. Each day is a new one, one that we try and forget, but are constantly reminded...
We fought with public school 4 days after diagnosis (2 month before kindergarten was about to start) to make sure he was safe. he wasn't. We went to private school for the past 2 years and have gotten more independant in his care and we are venturing back to public with a new principal and district nurse (Who won't be around much) and we are feeling okay... we are moving forward as he must. (although we have not yet finished paying the bills for it).
Jared has come so far... he is a big part of the book that has been written, it is all him, he is an inspiration and has a passion in him to help others who are scared. He was scared, we all were scared.. but we are lucky. Lucky for each day.
I hope Jared's book gets published and that he can have some impact in helping other newly diagnosed kids, or kids who just feel alone and need to know they are not.
I am feeling unsure and anxious about this upcoming day.. because I don't know what to do with it!?!? I have heard some let the child choose how they want to spend the day and be in control of as much of the day as possible to remind them they can have control in thier live, and they have done amazingly well over the past year, others celebrate another year of dealing, and others let is pass quietly. I am not sure what I want to do... perhaps I will leave it up to Jared.
It is coming.. 2 years that mark a huge adjustment in our lives, one that has changed it forever.
Sunday, June 7, 2009
(note: Since Jareds diagnosis of Diabetes, for the past 2 years (June 20th will be 2 years to the day) I have thought of doing the JDRF walk, and wished I just did it... I found excuses, including Jared telling us he did not want to, and not encouraging him to try (don't judge please... there are somethings not easy for everyone) I never really knew why... I care about the cure, I care about the fundraising... but until today, I did not understand what it is really about.
Today after the walk, the survivors had a parade/walk... and I cried. I felt a great energy the whole walk, I got teary eyes as the cheer leaders on the sidelines cheered us on, I got emotional when I saw the effort that those affected put into their team costumes or personalizing their shirts (including the little girl with the pigtails who could not be more than 6 years old whose shirt read (' In memory of my MOM' and it was decorated by her with flowers and hearts and all things little girls know how to draw best), and at the end, when I saw the whole group of amazing, strong women who faught for their health and for their life... I cried.
Everyone has a fight. We fight each day for another healthy one. Others fight against other illnesses.
Today reinforced to me that these walks are so important, because of who they touch... everyone who is there. Especially those who have had to fight the hardest to be there.
I know that in that sea of people.. no one, no one... NO ONE felt alone. We were united and for some reason, I know that I not only was blessed with getting energy from these amazing people today, but hopefully I was able to give just a bit of energy too.
All this aside, I know what my real fear was about the walk for our cause.. and I now have year to overcome it. I don't want to cry in front of my son, and let him know how much this affects me. He knows we all are frusterated with irratic blood sugars that are out of control, and the fact that we wish that no one had to have diabetes EVER, but he (to the best of my knowledge) does not know that this disease makes me cry sometimes.
and you know what else I learned... it is okay to cry.. because we are not alone, there are so many around you to send you strength without even knowing it and those tears dry pretty fast. Not for any reason other than... we have SO much to be happy about, and so much to be thankful for... for each day, everyone has their own fight!
Thursday, May 28, 2009
Well, I know what Jared wants out of this...
The interesting thing is.. that we do not often 'talk' about the cure.. we focus on today and each day dealing with what we have and being the healthiest we can be today. but last week, at night, as my son slept and I snuck in to check his BG.. I looked at him sleeping.. and I wished for a cure... a really loud (in my soul) cry for a cure... I want him to just sleep and us to just sleep and eat and play and live.. without diabetes.
So wish us luck with our book... We are hoping to get it sponsored so every new diagnosed child will get a copy. We have yet to find another book out there like it.
Do you have a great book that your kids love/ed when first diagnosed? Did you appreciate free books when your child was diagnosed, or did you go out and buy a book or go to the library? Were books helpful for your child during this hard time?
Sunday, May 10, 2009
I think of this story, because... We had a great day... my first breakfast in bed... playing in the yard in the sun, and even a 2 hour boat ride for kicks... we all had a blast. Odd thing was... Jared turned to me on the boat and said.. I guess I am 300... I asked if we should test and then kept looking foward and smiling with the wind on his face as he held and waved the rope from the front of the boat as though he was steering a horse.. with an excited 'heya,heya...woo hoo'. I reveled in his joy in that moment and having has checked him an hour earlier and he was at 190 I was skeptical and thought... we will be back in one hour, waiting one more hour will be fine... He was having such a good time, I just wanted him to be the kid who was having the best mothers day ever!
he was 420 a hour later.. HOLY self reliable CGM brain in a 6 year old. His pod got itchy, and sure enough he scratched it / pulled it/ poked it off... and has not been getting any insulin for about 4 hours.. including his lunch bolus...
I thought... ketones? should we check? we should because if we don't, they could be there, then I would feel guilty.. I would rather just check and say 'phewph' good night. He again called it... he saw the strip as he peed on it change color... he knew the moderate color.. he said moderate, then said..'the one before large, and after small' He is such a good kid, who knows so much about a disease that should not be! but is :(
Extra insulin and off to bed for him... Happy mothers day mom...
p.s His card to me was a poem, and he said 'Mom,I love you and thank you for feeding me and giving me good food. I love you.' For most moms, this may have seemed odd, but for me.. I know, he is saying thank you for keeping me healthy and alive with diabetes. After all to a diabetic kid, food is medicine.
Happy mothers day to all you moms who are up too many nights, probably cry a few silent tears and laugh and love your children ... And care for them so tenderly.. they know it, even if they seem to little to show it.. but when they can... boy you know it is all so hopeful...and everything is so clear!
Friday, April 17, 2009
I whisked Jared off to the Er while DH stayed home with my daughter and sure enough.. more lows... when we got there, they gave him the antinausea med (which he asked for when he got there! to quote him " I wish I had a Zofran"... the nurse said that any kid that would wish for that must know what is going on and how could she refuse... they were fast getting us in a room, and fast to get labs drawn... I was not sure for what... we did not have ketones, so no IV was 'yet necessary' unless he dehydrated...but the line was in the arm if needed
post anti nausea med, he was still low, and downed 4 more juices.. we finally hit 80. We shut off the pump...(not sure why I had not thought of that earlier that night.. ) I down dialed the pump the night before when he was going low, by only 15% and he woke up with ketones... from one extreme to the other - Yikes... this is odd and crazy... especially for Jared.. he is happy in his range of 80 - 180 and prefers to stay there ;) as do we for him ;)
They admitted us, with thoughts of liver or adrenal or hormone questions/problems unanswered in the horizon.. labs they were running a plenty... that night, jared went from 59 - with 15 carbs to recover, to 42 so we added 16 more carbs, he went up to 62 ... and so on... you get the picture...
they shut off the basal, again he woke up high after going low until around midnite..
they kept us another day.. now thoughts of celiac were on the mind... and all the good endo's seemed to have left for the day.. leaving us with a rather un confident, un competant dr... who after a day with no lows just results and supervision suggestions...decided that after a low of 67 just before dinner(which really is not that bad) which we decided to (at dinner time) let him eat off, rather than fill up on juice (Which is not our preference for a low anyway, we usually stick with milk as we feel that the protein/carb combo for a stable recovery) so he consumed 58 carbs... fifteen minutes later, we checked, he was 104.... perfect, my plan was to cover him for 58 minus the free ones... and move forward with a plan for discharge... Dr incompetanto decided we were here battling lows, and we should not give him any insulin and see what happens
(we interupt this blog to remind those who even might not know someone with diabetes that almost always if you don't give a diabetic insulin with food.... they go HIGH and ketones will surely follow)
I sucked it up... thinking he had a plan. He followed up by saying... and with no insulin on board, we can hold off on checking him for 4 more hours! (WTF!!!!!) okay, call me crazy, but I can play it that safe (or stupid) at home, and don't need my son in the hospital for them to play silly games that really did not seem at all logical.. I can assure you we have never had an experience like this before, and this new dr, clearly did NOT have a plan!
He came back 10 minutes later, and said, you really think that if we don't cover him or give him insulin or correct him, he will go high enough to wake with ketones?? I confidently, yet humbly said that I was sure it would, but maybe there was something I did not know, but I would be checking him every hour to watch him climb, as I am a data collector by nature, and never again would I not bolus my son for a meal and see what happens (for fun - NOT!)
We checked him after an hour, he had gone up 100 more, an hour later, 100 more... then I cryed... quietly in the hall, so not to alarm jared just after he fell asleep. A nurse advocated for me and made me feel it was okay for me to feel strongly about my son getting some insulin tonight.
The dr came back, i stood up for myself gently telling him, i could play it safe at home, and not 'collect data' by not checking him often if I was at home, which even then i would not do.... I needed them to allow me to give my son insulin...so finally at 380 he agreed would could do a half a correction (Still no basal) that half a correction was equivalent to the basal rate he would have gotten had he been on one.... and so... shall we play a game here, quess what happens next?.....
with a barely basal rate of a correction every 2 hours, he stays at that 380 from 8 at night, until 8 the next morning,.... steady as a rock.... and woke up with????? you guessed it... ketones.
okay, so my husband calls to say goodmorning, and as i am relaying this message, he is reminding me that we brought him there for guidance and safety not expecting all this and now, they are making him sicker... or sick.
we clear the ketones, I pony up again when rounds happens, with that dr standing there, and I said that I was not happy with his treatment last night, the obvious happened, and we need a plan, so i can take my kid home...
long story short.. a few more tests( and yes, 2 seperate (more) blood draws) later we have kind of had it... we increase his insulin ever so slightly, get him in the 200's and ask to be discharged.
The happy ending is that Jared is home, and eating normally again, and his blood sugar was 190 before going to bed, I will as i would have anyway, watch him like a hawk when he sleeps, and continue a conservative basal rate and conservative correction.
3 days at the hospital was enough to be greatful for all the uneventful but still diabetic days we have. We can handle this, the unknown is the hard part, but almost 2 years into it, realistically, i his mother aka pancreasparent know him best, and once he was out of the low woods (at risk for coma and seizures) I should have been bolder to do what i would have done at home in the safety of the hospital instead of letting them do nothing, but keep him 'safe' the test results for celiac arrive next week, everything else was negative thankfully... I will keep ya posted.
I think I needed this, a vent, and a breath, and to be home in my pj's with my hubby and daughter.
Home again, home again,,, jiggity jig :)
Wednesday, April 15, 2009
So I found a fun treat for my kids and I thought I would share it (Okay so it is a bit early before summer yet. but none the less we are excited!)
There are so many ingredients on all the popsicles out there.. and lots of carbs (even on the sugar free ones which we try and avoid, because it does not save you that many carbs).. this one you make yourself with your own bevie choice. We chose Orange juice - not watered down (although now thinking of it, that may work too ...hhhmmm....)and each pop holds 1/4 cup that makes each fun pop only 6 carbs! and a whole lotta fun. (okay so I splurged on the cost of the pop container, but I figure we will get lots of fun out of it... )
I hope you find some good fun treats too, and please share them, I don't ever want my kiddos to feel deprived, but we try and stay really healthy.. but they are kids, and every kid loves cold treats! :)
This is the part where you chuckle... I called the endo and asked what was going on. She replied "Funny how we all know how to deal with ketones and I would just guess... for the first time in almost 2 years (since diagnosis) your son has a tummy ache :) unrelated to diabetes! And that is why he still has a pediatrician ;)" She was ofcourse so nice and friendly and was still supportive while reminding me that we are in auto pancreas parent mode.. sometimes, (Rarely) but sometimes... kids are just kids... and the diabetes is just a side note.. a buddy we watch over... but not the main character we keep our eye on ;) (This was my interpretation BTW). We had lows all day and most of the night... we decided to lower basal rate, give him a glass of milk.. and call it a night.. know he would be okay, and try and fill up his reserves in his liver, should he need them.
I would love this story if it ended here.. it would prove the whole point of the diabetes does not rule the body...
but...He woke up at 365... oops... still a tummy ache... and now ketones... Humm....
I think the bug, finally disturbed the diabetes, and now we battle both...
Well, I get a home day with a kid who has a tummy ache, but not vomiting.. and we can manage this... you know what?!?! I'll take it... after all... with two kids.. how often do we get to spend a little extra 'love' time with the older one of our kids who is usually in school all day?
I am optimistic we will manage this too.. it won't be a hospital day... we are watching him close, enjoying our time as best we can.. and letting the diabetes just being in the background...
these ketones are not going to fool me for today again.. he is still my kid with a belly ache...(ketones) but mostly just a belly ache :)
Tuesday, April 14, 2009
Transplants help Type 1 diabetics skip insulin
Tue Apr 14, 2009 3:03pm BST
CHICAGO, April 14 (Reuters) - People with type 1 diabetes who got stem cell transplants were able to go as long as four years without needing insulin treatments, U.S. researchers said on Tuesday.
They said the process, which involves injecting people with stem cells made from their bone marrow cells, appears to have a lasting effect.
The study involved patients with Type 1 diabetes, formerly called juvenile diabetes, which occurs when the immune system goes haywire and starts attacking itself, destroying insulin-producing cells in the pancreas needed to control blood sugar.
These patients typically need daily insulin therapy to control their diabetes.
Dr. Richard Burt of Northwestern University's Feinberg School of Medicine in Chicago and colleagues first reported on the short-term success of the procedure, known as autologous non-myeloablative hematopoietic stem-cell transplantation, in 2007 but have since looked at how long it persisted.
Writing in this week's Journal of the American Medical Association they said 20 of 23 patients "became insulin free -- 12 continuously and eight transiently -- for periods as long as four years." The transient group of eight had to restart insulin at reduced levels.
The patients ranged in age from 13 to 31.
To find out if the change was lasting the research team said they measured levels of C-peptides, which show how well the body is producing insulin. They found those levels increased "up to 24 months after transplantation and were maintained until at least 36 months," their report said.
Even in the group which had to restart insulin there was still a significant increase in C-peptide levels that lasted at least two years, the researchers said.
They said the procedure was able to induce "prolonged and significant increases of C-peptide levels" in the small group of patients who were taking little or no insulin.
"At the present time (it) remains the only treatment capable of reversing type 1 diabetes mellitus in humans," the team wrote.
"Randomized controlled trials and further biological studies are necessary to confirm the role of this treatment in changing the natural history of (the disease)," they added.
(Editing by Julie Steenhuysen and Alan Elsner)
Thursday, April 2, 2009
1st question - WHY??? The pod change was done like the rest.. when I syringed the insulin directly to him, it wasn't spoiled... it worked... The cannula was not kinked, I didn't see any obvious occlusion.. it did not alarm.. his BG's prior to 2 am (midnite was not so far off base that we saw it coming)... Virus??? Maybe?? combined with pod issues?? huh? the question remains?? why?? I have to drop it - we will never really know.
I think that this experience again has reminded me that we love the pod, but even with killer algorythms comined with the dexcom (which we also currently use off and on) this is so FAR right now from reliable that we can't only count on this technology. ( to become the basis of an artificial pancreas) I know this seems dramatic - and we love the pod when it works (Which is most of the time) but when it doesn't wreaks havoc on poor 6 year old Jared, on me and even trickles to dad and his sister when the action happens middle of the night! ~ but truly, pod or pump, when you don't have your own working pancreas this can happen at anytime, with any technology or routine...
All was too quiet.. I keep thinking.. isn't that sick?!?! I an an optimist and belive in the power of intention... I sure hope my confidence did not trigger this episode (okay ~reality check ~ I know deep down it didn't) .. but seriously.. his numbers from the past month have been so stellar, we have consisered framing the print outs and have sent copies to his Endo who is also showing them off around the hospital like a proud mom with photo's of her child ;)I remember during our first few months on the pod (6 months post diagnosis) we would see blogs from fellow diabetics whose graphs were as straight and controlled as one could imagine perfection would be, it seemed so unattainable... we were getting there. This disease is so unpredictable - nothing is safe, or regular, or predictable!
Another day - back to the optimistic outlook - after all, in a few days we board a plane to visit great gramma across the continent... we all better be feeling our best - after all this rain... we are her sunshine!
Wednesday, April 1, 2009
What do you think?? Is this the answer we were looking for?
Researchers Successfully Create Computer-Simulated Model for Evaluating Artificial Pancreas
- Key Step in Ongoing Research to Replicate Insulin-Producing Function of Healthy Pancreas for Type 1 Diabetes Patients -
SANTA BARBARA, Calif., March 31 /PRNewswire/ -- A key step toward the successful development of an artificial pancreas for patients with diabetes has been achieved, according to new research published in this month's issue of Diabetes Technology & Therapeutics.
Researchers at the University of California at Santa Barbara, Sansum Diabetes Research Institute and Stanford Medical Center have effectively created a computer-simulated system for evaluating an investigational artificial pancreas comprised of the OmniPod(R) Insulin Management System--including the OmniPod insulin pump and Personal Diabetes Manager that controls it--and a continuous glucose monitor, in this case either the FreeStyle Navigator(R) or the DexCom STS7(R). The system also includes an algorithm that automates the interaction between the pump and monitor, and facilitates the running of a variety of tests and challenges to the software and component devices. The UC Santa Barbara-developed software and algorithms are also being used with a number of other pumps and monitors in developing additional systems.
"While we still have a ways to go, this new system brings us much closer to making the artificial pancreas a reality for type 1 diabetes patients," explained lead author Eyal Dassau, PhD, Diabetes Team Research Manager at UC Santa Barbara (UCSB). "This achievement is vital--we now have a way, prior to patient trials, to fully verify and validate that an artificial pancreas can efficiently operate in the variety of conditions reflective of a large group of patients with this disease."
The research is part of the artificial pancreas project, which is funded by the Juvenile Diabetes Research Foundation and is being conducted by an international group of diabetes research centers. The project's first goal is to integrate an insulin pump and continuous blood glucose monitor to closely replicate a healthy pancreas for patients with type 1 diabetes--patients whose pancreases no longer produce insulin, which is used by the body to control blood glucose levels. An artificial pancreas will allow for tighter and automated control of blood glucose levels, which would significantly help to avoid the long-term complications of the disease.
"This new system will really help streamline the preclinical trials; it will provide data central to the regulatory review process," said investigator Howard Zisser, MD, Director of Clinical Research and Diabetes Technology at the Sansum Diabetes Research Institute in Santa Barbara, CA. "We plan to begin using it in the next several months."
UC Santa Barbara (UCSB) is a leading research institution. The two groups involved in this study at UCSB are the Department of Chemical Engineering, which is committed to excellence in teaching and research and in 2007 was ranked ninth in the United States and second in the University of California by U.S. News and World Report, and its Biomolecular Science and Engineering Program, which offers a unique interdisciplinary approach to graduate training and research spanning Biochemistry, Molecular Biology, Bioengineering and Biomolecular Materials.
Sansum Diabetes Research Institute is a non-profit research center devoted to the prevention, treatment and cure of diabetes through research and education. In particular, it is known for its work on methods to detect and chart the progress of diabetes and its expertise in new diabetes technology.
The OmniPod Insulin Management System is manufactured and sold by Insulet Corporation (Nasdaq: PODD). The FreeStyle Navigator is a product of Abbott Diabetes Care, and the DexCom STS7 is a product of DexCom, Inc.
They have assured us that his best interests are theirs too and we need not worry.
For now, I am not.
I am quiet... waiting, and preparing for a successful start... with the fore-planning done to get the school ready.
Sometimes, no new news is good news.
Sorry I have been so quiet... I have needed it ;)
p.s His current Private school has assured us that in a heartbeat (and a written cheque ;) ) they would take him back if they have space.... This helps...
Tuesday, March 3, 2009
My son is in 1st grade and is bright, he attends montessori (private school) We ended up there by default as the public school was not ready for his diabetes (Trust me, 4 days post diagnosis, neither were we, but we did not have a choice) He ended up at a wonderful school in which the teachers are really sincere and care enough to help my son with his diabetic needs.
The issue... My daughter is going to be going to going into kindergarten this year, and we were thinking we wanted both kids together... Sending 2 kids to montessori would break the bank (to say the least)SO... do we pull our son and put him into a public school (Which note, now has a new principal and new pseudo nurse (She is still nurse to 6 schools - so does not spend much time at her school) or put my daughter into montessori, or split them up?
Aggghhhh! Pressure is on, everyone needs us to enroll.. and pay deposits. I need to decide and I can't. I Love the education my son is getting and his zest and love for learning, and the extraneous and extra subjects he learns at this private school really help fuel his passion for learning... But will this.. can this continue at regular school?
What would you do?
So the underlying issue is that it is not only academic, it is social as well... in his mixed class (and ultimately hers too) there are very few kids the same age as your child. And from the current selection in his class, the other boys have major behavioural issues.. not to mention lack of filters and discretion! The appeal of the local public school is the new friends and a class full, if not 2 - 3 of new opportunities for friends...
Is the grass always greener?
Imagine that I am so confused about the above, I have back burnered that we have to factor in the whole diabetic issues of testing and lunch boluses...
Ack! Ugh, Sigh... HELP!!!
Sunday, March 1, 2009
It was a beautiful day and all was great, we were bike riding along the ocean and train running through the forest and running outside while the sun was out. After our adventure for an afternoon snack, we passed our all time favorite bakery. We have mastered the 'croissant' bolus... so we have not let diabetes stop us from visiting our old time favorite digs for a treat. This time my daughter had her heart set on a cookie... well our son then wanted one too.. he was willing to for go the croissant if only he could have some peanut butter cookie. It was a big one.. almost the size of an infants face.. his BG going in was 116 and we thought with all the activity we could 'let him be a kid' *dun, dun , daaah.... we bolused a good amount, and ... well... if ever there were excess of carbs, those buggers would be hiding in that peanut butter cookie.
If you give my kid a cookie... 3 hours later... he will climb to 399... extra bolus... cover for dinner.. and just then, as luck should have it ... a pod change.. dun, dun, duuuh... the plot thickens... the pod occludes, and no warning alert is given to his little body... he climbs into bed.. we think we are still playing catch up with cookie and the high BG is from that... but low and behold the new pod decides it can't push his occlusion through the line and .. dun. dun, duuuhhh - DOH! I thought I saw the occlusion in the night and start injecting him... trying to keep up with what he have been dealt... A pod change to a sleeping kid is not nice - and that is just peeling the adhesive off the first pod.. not to mention the insertion of the new cannula, which is loud and a bit of a shocker while you are sleeping!... and an hour later, he is up complaining of a tummy ache and .. - Thank goodness Jared is so intune with his body and listened to it.. who would have thought we would be dealing with this in such a short timeline, but ...we check for ketones - Moderate! SH*t :o( this is the beginning of what could be a long night... he is up and we change the pod.. we continue to inject to make sure, get into bed with him, and try and sleep it off... Half sleeping he asks " if I didn't have diabetes would I be up feeling sick right now?!?" We tried to explain that kids all over the world can wake up in the night not feeling well for all sorts of reasons.. but inside we were sad.. this time, for him, it was only beacause of diabetes (and a cookie!??!? and a bad pod?!?!)
we wake to a new day.. with a happy ending... by 8am ketones are gone and he is ready for breakfast and back to 150...
As much as we tell ourselves, with the miracle of insulin, our kids can eat what they want..(And maybe because we don't encounter it very often.. it had an extra negative effect..) This innocent enough cookie started a chain of events that lead to ketones in the night... (for some reason.. moms intuition even only suggested a mostly protein dinner after a high reading post cookie (pre pod change) and that helped... but imagine... what mac and cheese could have caused to this whole chain of events! More chaos. And shouldn't a kid be allowed to eat what other kids eat... In our case.. I think we know ... that answer is 'no'.
I went to sleep earlier that night an optimist - that is who I am... and after middle of the night injections, and sore tummies, sad questions and ketones, I went to bed chanting I hate diabetes, diabetes sucks... I was mad... but that was not helping the cause..
(self talk section: I even tried earlier that morning to get him to wear his CGM - bribes and all... and I feel for him, for all he has to go through... but I can't let guilt win.. care and diligence is the only ammunition we have for beating this disease... so for now... we can write stories about uncalculated cookies.. but for us, they will only be fairytales)
I wish for everything in the world, that we could go back in time a year a half.. it was a high point in our lives, and then diabetes hit.. it could happen to anyone, and sucks big time... we learn from it and my son has shown me that kids can be heros... but I wish it all played out differently.
Tired and resentful - the optimist signs out... for today is another sunny day, and we move forward, not letting the emotions overcome.
Enjoy the day.. we will...
Signing out again,
Tuesday, February 17, 2009
you are such a little thing that is so small but says so much... but still after you are used, you must be thrown away.
You sometimes remind me of clowns fitting into a clown car when we empty the diabetic kit at the end of the day (or week) Seeing just how many of you can jam yourself into the bottom of the case to hide... until you are found and discarded.
Oh test strip.. how much fun you can be when it was figured out that when seperated after use, you are like stickers and can be stuck.. well.. anywhere.. and everywhere. (especially by little sisters)
Test strip... as excited as we are to find a few more in a bottle when we need to test and thought we were out... we are not as excited to find you used and in our beds at night... on the floor... and stuck to our bodies ;P
Little test strip, some day, we will make biohazardous art with you, but for today.. could you find your way to the garbage can... please!
Thursday, February 12, 2009
The principal (new also) is on board and is wanting to put a team into place and take care of him so we all feel safe.
I am liking the sounds of this...
I will keep you posted :)
(this is a far way away from my sons first meeting 2 years where he walked away saying "Does my new school not like kids with Diabetes??)
Sunday, February 1, 2009
I was panicky... that morning, my friend asked me to watch her son so she could pack up for a trip they were all leaving for the next morning... I said yes in the morning while out running the last of my morning errands with my daughter, but one store did not have OJ, yadda yadda,,, we ended doing a bit more running around than i anticipated... Bottom line, after lunch we were both tired! so I cancelled on her... I picked up a few things from the store she needed, but I cancelled on her, out of fear of my daughter being a disaster for our appt that afternoon. so in the afternoon before we picked up Jared from school, she rested at home.
Now i regret my decision, not because everything worked out okay, but because sometimes, unintentionally i become so focused on Jareds appt and taking care of his diabetes, I forget how much i rely on my friends, and how much they do for me when we are in a pinch, and i did not return the favor.
I was so obsessed with this appt I let my friend down. (she evidently is okay with it, but I feel horrible!)
Jareds A1C was fantastic, which after a rough winter was unexpected,,, but it was bitter sweet. I felt like his great numbers was also in part because I am so focused on helping him be the best and healthiest he can be, I forget to be a good friend to others sometimes?!??
I think this is the point where i look in the mirror and ask, what is more important. The problem is.... my friends are just as important as taking the best care of my kids as possible.
How can we balance being the pancreas parent, and being yourself and a good friend?!?!
Monday, January 19, 2009
Some days, I'm a question mark, constantly wondering. "What caused this high?" "How do I figure out this basal rate?" "What kind of foods can I eat today?" "Am I a bad person because I ate that?" "What the hell is that thing BEEEEEEP!ing for again?" "Where is my meter?" "Is that because I'm low or because I'm me?"
Other days, I'm an exclamation point, frustrated and a bit burnt out. "I am mad!" "I don't want to deal with this stupid disease anymore!" "I want to go to sleep without all these devices!" "This isn't fair!" "I quit!" And also, "Yes, I can eat that!"
Moments where I can't separate myself from my disease become saturated with hyphens. It's all "diabetes-related" and "high-high" and "blood sugar-wise." A doctor-patient relationship. Am I Kerri-with-diabetes or Just-Kerri?
There are days when I am a comma, taking a brief pause before making a decision. "I just treated the low but I still feel low, so I should wait before eating something else." And on particularly confusing days, I can be a semi-colon, taking an even longer moment to make sense of something. "I'm low and I've treated it; however, I exercised, ate something sugary, have active insulin, still feel the low, and have no idea what to do next."
But overall, my diabetes is punctuated by an ellipse. I manage the moments, but it's always a question of the unknown. Yes, this is the "now," but what happens later?
If I eat this, I could ... If I go to sleep on this blood sugar, I might ... If I spend the next five years ignoring this, I may ... If I don't do this, I will ...If I'm happy and healthy, my life will be ...
Every day is different, and every diabetic is different. And every moment is left with an ellipse, trailing off into the unknown. it can be very easy some days, and completely overwhelming on others. Sometimes I tire of taking the editorial red pen to my diabetes. And other times, I need to remind myself that this isn't something I can ignore.
I think that the most important thing I can do is ... live.
Posted by Kerri Morrone Sparling on January 19, 2009 09:50 AM Permalink
** Based on the quiz at http://www.blogthings.com/whatpunctuationmarkareyouquiz/
Sunday, January 18, 2009
Deep breath. sigh, smile.
There is something wonderful about being lucky enough to have a CGM to help you through the questions.. to know (or better understand) which direction the BG is going in, and help to understand what impact all our daily decisions have on our diabetic children.
I feel like this post is the clear me, and the one who feels confident (and vulnerable) that we can survive each day, that our kids are the strongest, and by teaching them to undertand themselves, they are going to best care for themselves over the long run.
I was noticing I had become a bit too 'dear diary' and a bit on the negative side. I felt like the winter season had beaten us down.. but that is not our style.. we are get up and get ' at ' er kinda people...
I am back up and at' er and so is Jared and we feel good again...
We are healing from our winter illnesses and BGs are back on track, and tightly controlled... all while (in moderation) enjoying the little things in life that make kids smile.
My son has started writing a book with his grandma about living with diabetes, but after much thought, and reading thier first draft.. it is about him.. living, choosing and caring for himself and those around him.. and those who help him, and make his life as normal as possible while having diabetes.. that it is not what defines him, but a part of why he needs help.. so he can be like all the other kids.
All this joy has reminded me of why I can be strong, and happy and confident again.. that not all is chaos...
Tuesday, January 13, 2009
We applied back to the home school last year for 1st grade and the same... not really a safe option.. so we put him back in Private... Okay... here is the part I am keeping to myself (okay, again, guess not anymore... wow, this really is theraputic, considering I started out by not feeling like talking.. but felt like I was abandoning blog) I am applying again this year to our home school. Last year when he was declined, those around me told me "what was i expecting them to have a change of heart?" They don't want "trouble or kids with issues at their school.. that is not going to change.. they have not had a diabetic kid there in the past 18 years of record" nothing is going to change!!
But call me stubborn, this year, I feel things could be different... Jared is really self sufficient (Well more than you can expect of a 6 year old to say the least) and is not on shots... he is on a pod and can do his own finger pokes... Call me crazy... but now that my daughter is about to enter school.. we need a solution for a school where they can safely go together.... and Private school is well... (is there a term past stretching us thin??) seeming as a stressful option.. There is a new principle (The old one really was closed minded and wretched! and a new designated (one day one hour a week) school nurse... This could mean change.. I hope!
Okay, so wish us luck with all the decisions and registrations for public and private that are in our next month of our lives.. and hope that neither kids are affected or saddened by the choices we as parents have to make.
Did I mention my son really wants to stay in his school until grade 3~??~ that is two more years!!