Friday, April 17, 2009

When you least expect it... no answer,,, and we move on,,

So after my hooky day that I mentioned earlier... we had some random Low BG's... and then some more, and then some that were harder to recover from than before... 15 carbs, test still low(if not lower) 15 more carbs.. rinse and repeat for an hour before we got up to 80! 2 nites of this and on the second nite... we decided that with a white poop and a mysterious 'non absorbtion' of carbs.. or over absorbtion of insulin, we would call the dr hotline(s).. I called 3.. none had advice but to go to the er at childrens for some answers.. they were all anticipating some storm was about to happen in his body... within an hour he did vomit... and then the low... got lower!

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 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

6 carb popsicles!

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! :)

Sometimes we forget...

So After our spring break, Jared had a few suspicious pods, was recovering from the 'cough' thing that was going around and well, we still dragged him 3000 miles from home, and then after our 6 hour flight, we slept for one night at home, then headed into the car for another journey to be with more family for another 3 hours each way... he got in the car with ketones.. I knew.. I could battle those suckers, honestly I am getting used to pods not delivering enough... I can attack the ketones aggressively, especially if I know I am within a one foot radius of him .. in a car - he is not moving and not consuming anything. Ketones done.. Fun with the family - Drive home. Monday is a school day.. That night he has a bit of a problem falling asleep from a belly ache.. I check ketones, we are clear.. We assume he ate too much dinner.. and off to bed.. He wakes up tues morning, a bit of a tummy ache - we check for ketones - Clear...but oddly he has been running low since last night which is not been the norm for some time now.. I decide we are all exhausted.. lets play it safe and have a home day = play hookey. All day he had a slight belly ache and kept going low.. no ketones..

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

Time off would be nice ;)

Happy Spring Holidays... I kept wishing for Jared that he could just be a kid for a day... but he knows as well as I do, that if he doesn't think before he eats... he doesn't feel well. I know for a lot of us, we wish for our kids for a break - a day, a month, even a few years.. Looks like something may be on the horizon. I find it interesting that they have tested this on people including children ages ranging 13- 31... Wonder what state and side effects happen after the new 'honeymoon period'... It is obviously a few years away still before we fully understand this.. but seems that the scientists are busier than ever... We all know, our kids could use the break! (Pancreas parents too!)

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)