Saturday, December 23, 2006

not even a mouse...

Researchers reverse diabetes in mice
By Randall Palmer
Fri Dec 15, 5:57 PM ET

OTTAWA (Reuters) - Nerve cells in the pancreas may be a cause of type-1 diabetes in mice -- a finding that could provide new ways to treat the disease in humans, Canadian and U.S. scientists said on Friday.

Defective nerve endings may attract immune system proteins that mistakenly attack the pancreas, destroying its ability to make insulin, the researchers said. This destruction is what causes diabetes.Injecting a piece of protein, or peptide, to repair the defect cured diabetic mice "overnight," Dr. Hans Michael Dosch of the University of Toronto said in a telephone interview. "It is very effective in reversing diabetes," said Dosch, principal investigator for the study.

Writing in the journal Cell, Dosch and colleagues said the faulty nerve endings did not secrete enough of the peptides to keep enough insulin flowing. Type-1 diabetes, once called juvenile diabetes, affects two million Americans and 200,000 Canadians. There has been no known way of preventing it.

The team will soon begin clinical studies on people whose family history suggests they are at risk of developing type-1 diabetes to see if their sensory nerves work well. If they do not, Dosch said, that would suggest the bad nerve endings were a cause of diabetes, not only an effect as has been widely assumed. Trials could then begin injecting peptides into patients with diabetes or those at high risk. It could take a number of years, Dosch said.

He said the findings might also hold promise for type-2 diabetes -- which affects about 10 times as many people as type-1 -- though the results were not as strong. The researchers found that the peptide injections lowered resistance to insulin, which is used to move blood glucose to the body's cells. People with type-2 diabetes often are obese. By lowering insulin resistance, it might be possible to prevent further obesity and damage from diabetes. "Whether we can reverse the process, I don't know. But I think we can certainly impact on the major physiological problem, and that's insulin sensitivity," Dosch said. "So if these people then have normal insulin, then a little activity, then a little walking would actually help lose weight, and then you stop the vicious circle."

Wednesday, December 06, 2006

in the target...

L has been in the target for two days in a row. She has been complaining about headaches, however, so we are keeping a eye on that.

She describes them as painful and they feel "like her eyes are looking at her brain." Curious...

Sunday, December 03, 2006

hi lo...

I mentioned L was at 38 a few nights ago, but I didn't really talk about it. I have been feeling really awful about it and it took this long to feel okay to write a post.

L is a picky eater. I can't blame her - I was worse. My family still makes fun of me and my plate of cherry tomatos that was at my place for every family dinner. I didn't eat salad until I was on a date in highschool and was too embarassed to say I didn't like it, and thought Garlic was a spice until college.

L was the baby who ate everything. She was even the toddler who ate everthing. Then came preschool and something happened. Something like other kids complaining about the food, and so my little parrot thought she could do that too.

The night of the low (NOL...)L refused to eat her dinner. I had it all ready and on the table before I gave her her injection - actually she gave herself her injection that night. The she refused to eat.

The insulin was in and starting to take effect. What do you do? I knew she was just being bratty, and I was tired of it so I told her to eat what she was served. The stand-off went on for an hour when I finally broke down and gave her a poptart. I ate her chicken nuggetts (which were only something like 10 carbs worth) and her cold peas.

I sent her to her room. I needed a break. I invited her to join me about 20 minutes later to work on an art project. We were sitting together and working quietly when she mentioned she felt low. Honestly I thought she was still being bratty so I told her to test. She complained that her test kit was in the kitchen (literally 4 feet from where we were sittin) and that she didn't want to go alone. I was frustrated and told her to bring it to where we were sitting and she could test there.

I really had had enough up to that point that night. I didn't notice any signs of her being low - the other time she was in the mid fortys she was super silly and sweaty. It was quite a shock when her number was 38. That is really low - scary low...I am so happy that she recognised it, because I sure didn't.

The next several days have been the battle of the highs. Her number at bedtime tonight was the first in her target. She had a trace of keytones and I had to go to the movies just to chill out. (T stayed with her at home)

SO much to learn. The symposium yesterday was helpful. More about that soon.

Friday, December 01, 2006

Honeymoon Bouncing

L is in her honeymoon period and according to everything I've read and have been told it can last from two weeks to four years. One of our questions at clinic last week was how we would know when the honeymoon was over.

"Oh, you'll know..." was our answer. Great. Thats crystal clear...not.

I found out another clue today when I frantically called Dr. B. L had two lows at school today and tested over 400 when I picked her up. This must be it, I thought.

When Dr. B answered the phone I greeted him with, "The honeymoon is over." I read him her numbers over the last two days (while I was driving and clicking through her meter and talking on my cell...) He didn't think it was the honeymoon ending because if it was, he said, her numbers would be high consistently and we wouldn't see any lows.

Oh. I missed that memo. Well, he explained she was "bouncing." A very unpleasant variation in highs and lows that he couldn't explain, but assured me was typical. He also mentioned that we "had it easy." If that was meant to help me relax it only made me angry. This disease makes me angry, so basically anything he said other than there was a cure discoverd today would have made me angry.

L had her first scary low last night. 38. The amazing thing was that she knew. I had no idea. We were sitting quietly working on an art project and she said she wanted to test. She tested, treated, and then went back to doing her project.

We could all learn from her how to deal. And she does it gracefully with low blood sugar.

Saturday, November 25, 2006

Flu Shots

Another D parent recently pointed out to us that it is imperative that L get a flu shot. When you have the flu (if I have my facts straight) your liver releases stored glucose as well as a hormone that keeps insulin from processing it. This is well and good if you are not diabetic, have the flu and no appetite. Your body is built to take care of itself. However, a diabetic is balancing their insulin based on their carb intake, so if their body is saying not to respond to the insulin, then trouble in Kansas city...

We got a flu shot for her at Clinic the other day. She hated it - tensed up and the nurse had to stick her 3 or 4 times before she complete the injection. I was ready to do it myself. But we felt better knowing we were protecting L from the possibility of the flu and the nasty side effects diabetics suffer from.

Hmmm
L has had numbers in the high 200 - 300s over the last two days. No key tones, no rhyme or reason.

My theory is that her numbers are hight because the flu shot has her body responding to well, the FLU. It would have been nice to have been forwarned that this might happen. It is either that or the honeymoon period is over. As Dr. B said, "Oh, you'll know when its over..."

I feel a bit depressed about all this tonight...

Wednesday, November 22, 2006

Lucky 7

Oh Joy!
Lili's A1C was 7.0. Right smack in the target. Yay for L.

We had our 2nd clinic appointment today since diagnosis. We came armed with a million questions, frazzled nerves, and fear of being reprimanded for not doing middle-of-the-night tests for the last three months.

The best comment from Dr. B was to make sure to give L "diabetes vacations" and do all her shots for her so she won't get burnt out. She has been doing her shots by herself for over a week and was so excited to tell the Dr. He told her that she was ahead of the game and that usually kids don't start doing that until they are in the 5th or 6th grade. For the record, I think she was inspired to do her shots because my hands are cold in the AM...

Had a good discussion about GAD proteins, pancreas transplants, and closed loop insulin pumps. Told the doc to put us on the list.

Tuesday, November 14, 2006

World Diabetes Day


Here is a note my friend Allison sent via email today:


Happy World Diabetes Day!

Okay, so that doesn't quite sound as sincere as "Merry Christmas" or "Happy Thanksgiving, because there really isn't a lot to be happy about when it comes to the global diabetes epidemic. You and I both know how important it is to find a cure for diabetes, but it's also important that diabetes is recognized as a serious problem by more than just our community. Luckily, there is something "happy" going on right now. You may have heard about the new Unite for Diabetes Campaign, which is organizing efforts to pass a new UN Resolution on diabetes, which would recognized the epidemic, encourage and support countries in research and education, and give us the opportunity to speak at the UN in New York City each year on November 14. Right now they have posted a petition to encourage our UN ambassador and other key opinion leaders to support passing the Resolution. It's a great opportunity to be a part of a global diabetes initiative. I'm doing my civic duty and signing the petition and telling you all about it, and if you haven't signed the petition yet (and forgive me for being redundant if you have), you can sign the petition by visiting this website
http:http://petition.unitefordiabetes.org/form.php

You can find out more about diabetes on a global level and the Campaign by visiting
http://www.unitedfordiabetes.com

Once you sign the petition, please send this link to all your friends and family. Diabetes doesn't just affect the people who take the shots and test their blood sugar. It affects the whole world. Thanks!

Allison

Diabetes Writer and Consultant
http://www.lemonlemonade.com

Sunday, November 12, 2006

Ice Princess

This weekend I watched my daughter compete in her 2nd ice skating competition --first since her diagnosis. I couldn't believe how strong she looked. She has gained her muscles back and looks like she did a year ago, only taller and stronger. I kept staring at her in amazement - it was only 6 months ago that we were wondering why she was so thin, after looking strong and athletic her entire young life.

The first day was intense. Right before her first program I left the coaches area and went to the outside of the rink where I could see her waiting to take her turn. I kept wondering how she was feeling - not wondering if she was nervous, but if she felt low, and if she knew where I was in case she was low, and hoping I would be able to get to her in time and not have any drama to ruin this experience for her.

Much to my suprise she was crazy high all weekend - in the high 200 and 300's. No keytones, fortunatly. Thank goodness another D-mom called me and assured me that this was typical - that adrenaline from excitement and nervousness can raise your BG levels.

Nothing about this condition phases her. She skated the best I have ever seen her skate. What a kid. Focused, determined, strong.

Friday, October 27, 2006

Halloween Part 1

I just finished reading a newletter sent out from the American Diabetes Association where they suggested offering your child pumpkin seeds, stickers, and wax lips instead of candy for trick or treating.

Um...RIGHT. Pumkin seeds taste EXACTLY like Reeses Pieces. She won't notice a difference. No problem.

Okay - truth of the matter is I am really concerned about L's first Halloween since her diagnosis. We have always made a big deal about this holiday. I love it. I am a candy FREAK. It has always been my favorite holiday, hands down. Costumes and free candy. What could be better!

So now what. I have had lots of suggestions. Trade in candy for cash. I think they had a similar program with hand guns a few years ago. Tell her to leave the candy on the porch for the Great Pumpkin or the Tooth Fairy and they will bring her a present... I don't know. How many times a year does a fairy or magical creature need to be invited in?

This is turning into a rant - but in a way, it is. I can't handle negotiating this holiday. I also read that some families bolus or give extra insulin so their kids can eat one piece of candy a night. Well - I DON"T KNOW HOW TO DO THAT. So it is not an option.

L is going to be a devil this Halloween. She designed her costume and I made it. When she tried it on she said, "Mom, I don't want to hurt your feelings or anything, but I like this costume better than last year!" I felt so proud.

We agreed to trade in all her candy but 10 pieces for a new outfit for her American Girl doll. She is fine with this, but I wonder, really? Wish me luck - I don't think she is the one who will need it - to make it through this holiday sane.

Tuesday, October 10, 2006

Going Out and Pumpkin Bread

One of the most misunderstood concepts about type 1 diabetes is that you don't have to give up eating sugar. Most adults need this explained to them (I did) and most kids seem to have some information that diabetes "is when kids can't eat sugar."

L did a cooking project in her class today. Her teacher found a recipe for pumpkin bread that used Stevia (a natural sugar subsitute) I tried to explain it was okay for L to just have a small portion of the bread made with regular sugar, but she had gone through so much trouble to accomodate her I decided to let it go.

Part of the lesson was a "going out." This is something in the montessori curriculum that happens in the elementary classroom and this was L's first. This means they contact a chaperone (not their own parent) to accompany them on a journey - in this case on the street car to a market.

It was important to me that L have this experience, although I was worried about all the usual things that can happen (going low, or worse, having a low emergency) but again, I wanted her to have to confidence to plan and execute her going out, so I didn't express any of these concerns to her.

I knew the parent well who they contacted and she knew about L's condition. She didn't express any concerns to me (perhaps she didn't know what to be concerned about?) nor did the teacher, so I place my trust in them.

The going out was a success. The children had to figure out the calulation with the Stevia to Sugar ratio (we are talking about 7-year-olds here...) and how to fit it into their budget (apparently it was a lot more expensive than sugar!)

The parent chaperone had a great time - told me L was very responsible and kept watch on the time so she wouldn't miss her 10:30 snack, and even did a blood test while they were out.

I am happy for L that this was so easy and successful for her.

Thursday, October 05, 2006

Diabetes Support Groups for Kids and Adults

My friend recently opened this really cool community art studio and therapy center. She is offering some Diabetes support groups. Please spread the word if you know of someone who would be interested in coming to this!

http://www.the100thmonkeystudio.com/page4.html

Current Group Offerrings
1. Diabetes Art Therapy Support Group for Kids
10/5, 10/19, 11/2, 11/16 & 11/30
from 6:30-7:45pm
Members:$80.00 Non-members:$100.00
2. Diabetes Support Group for Adults
10/12, 10/26 & 11/9
Members:$80.00 Non-members:$100.00

Tuesday, October 03, 2006

Dessert

Imagine you are seven. Your parents take you to a German Restraunt in town that serves authentic food - meaning no PB&J or Grilled Cheese sandwiches on the menu. So you order "Snitzel with noodles" until your mom explains that is sausage -- (Yuck...) and settle for the other thing that sounds "normal" on the kids menu ("It's the German Mac-N-Cheese" the server explains.)

Now imagine you are seven and you are type 1 diabetic. While you wait for your food, your dad draws up your insulin at the table. Your mom gives you the shot - which hurts, but you don't want to complain because it is at a restraunt and your mom will get mad. They bring salads first (which you hate and are not eating) and you have to wait forever to get your food. You drink a glass of apple juice to tide you over, and your parents argue over how many carbs are in the small slices of bread that were brought with the cheese fondue. They tell you you can have 5 pieces for 10 carbs.

Then you get your food. It looks like worms. It tastes like worms. Worms are disgusting. You refuse to eat it. Your mom butters a hard sourdough roll and orders another juice. Your parents are still counting the carbs and dissagreeing.

Not much of a dinner. Then the server brings the dessert tray. It has the most delicious looking desserts you've ever seen. Three layer chocolate cake, rasberry cheese cake, brownies and whip cream, mounds of sweet desserts that are waiting to be devoured.

Imagine you could only eat 70g of carbs for dinner and you used them up with apple juice and stale bread.

Diabetes Sucks.

Monday, October 02, 2006

JDRF Walk Oct 1st 2006


Way to go Hi Lili Hi Lo!
We raised over $3,000 for the JDRF!

Tuesday, September 26, 2006

Ants on yer boots

Just remembered an crazy thing that was going on before L was diagnosed. We had this very aggressive mold growing in our toilets. We were cleaning it every day. Both of us thought it had something to do with the pipes. Never in our wildest imagination did we think it was because L had sugar in her urine.

We connected to her diagnosis when a friend told me her grandfather, who was a cowboy, once said "a cowboy could always tell who was diabetic on the range by the ants on his boots."

Monday, September 25, 2006

GAD

UCLA Neuroscience Research Leads to a Possible Treatment for Type I Diabetes; Clinical Trial Results Are Encouraging

My sister sent me some facinating research that was published in the UCLA alumni newletter about a new vaccine being tested in human clinical trials for Type 1 Diabetes.

Two neuroscientists isolated the genes for enzymes known as GAD (glutamic acid decarboxylase) which are made in the cells that that make insulin in the pancreas. These cells use the enzyme made by GAD to help control the blood glucose levels. The hope is that by isolating this enzyme they will be able to develop a vaccine, identify the potential for getting diabetes as early as five years before onset occurs, and eventually prevent diabetes once an onset has begun.

This is the link. It is a long article, but worth reading
http://www.newsroom.ucla.edu/page.asp?relnum=7329

This is the company that is making the vaccine.
"Diamyd Medical is focused on developing treatments for diabetes, both Type 1 and Type 2, via GAD protein therapy. Its lead drug candidate, Diamyd™, is designed to reduce the need of insulin injections and prevent the destruction of beta cells. Furthermore, it may allow for regeneration of beta cells in a non-autoimmune environment, thus setting the stage for a cure of the disease."
http://www.diamyd.com/

Sunday, September 24, 2006

Sick as a Dog...

When a diabetic gets sick it can be serious. During illness, the body releases extra glucose from the liver, which can make the blood sugar levels high. Also, the substances that signal the liver to release the glucose can block the effects of insulin (1). Needless to say, a diabetic child with a cold is something to worry about.

Friday L was not feeling well. The first cold/flu of the season had gone around her classroom as well as where I have been working. We were both not feeling well - I went home from work and slept for three hours. She toughed it out and her blood sugars were in the high 200s as a result.

That evening we decided to go to a football game that her uncle coached and cousin was playing, and thought the fresh air would do us good. Maybe it did, however it ended with us leaving in a flash and me trying desperately not to throw up all over the bleachers.

None of us got much sleep Friday night. L skipped skating (which she has NEVER done) because she was not feeling up to it, and we hung around the house. We tryed to call her doctor, but were on hold forever, so gave up. All the books I had said the same thing - test for keytones if her numbers are high consistantly, which they were, but luckily none were present.

Sat night we went out to her grandparents house for dinner. When she tested at dinner her blood sugar was in the high 300s. I was not feeling well to begin with, but now I was a wreck. Not to mention it was really affecting her mood (not in a good way)

T and I decided to go to the market to look for cold medicines and a sugar free dessert for her and came up short. Most cold medicines have sugar and/or alcohol in them with distinct warnings for diabetics and those with thyroid conditions. D--n.

Sun AM she work up complaining of an earache. This was not happening. We had slept in an hour past her regular breakfast and now I was really stressed. I didn't care if it was Sunday - I called the doctor. This was supposed to put my mind as ease - but only infurriated me more. His advice was nothing more than what I had read in my books, and his comment when I asked him about cold medicines: "Well, I've never been a big fan of those." WHAT????

We decided to lay low for the morning - even though we had plans I had been looking forward to for a month at a friends house for brunch. We went out in the afternoon, and we were all feeling better - she stopped complaining about her ear. Then a friend came over for dinner (I had cancelled making New Years dinner on Sat night and was making it up to him)

He brought his dog. A small 5 or 6 pound little white thing - who proceeded to throw up 16 times on my carpet, in the kitchen, on the carpet again -- over and over and over. We used an entire roll of paper towels mopping it up.

Hope everyone is feeling better tomorrow.

(1) American Diabetes Association

Saturday, September 23, 2006

Bracelets For Sale!

L is selling recycled syringe cap bracelets she make at a neighborhood bead store. They are really cool. She is planning to give all the profits to the JDRF.

Stop by (or call!) and get your now!

Beads at Dusti Creek

http://beadsatdusticreek.com/

4848 SE DivisionPortland, OR 97206(503) 235-4800

Monday, September 18, 2006

Sunday, September 17, 2006

Diet Pop

I've never been a big fan of Pop. We have only given it to L as a treat and don't keep any in the house. When she was diagnosed, we compromised and bought sugar-free Italian soda flavors for her to mix with sparkling mineral water as her "free" sweet drink. It hasn't been that long since I was a kid - hey , I used to think cool-aid was tasty. I get it...

It is hard sometimes at restaraunts when all they have it diet Coke or Diet Pepsi. If that is the only choice, I usually ask for them to bring it in a smaller glass. This was the case today when I "okayed" a small diet Coke for lunch.

We had just finished the Race for the cure - a 5k. We had been treating L for lows throughout the walk, and then had to wait an hour to get a table at lunch. She was tired of me checking, so I let it go with a number of 84.

After lunch, L fell asleep in the car and then took a nap for two hours. This should have been a sign, but she had also just walked a 5k, so I didn't worry. When she woke up she was very irritated and crying, so I had her test - way over 200. It continued to go up - it was well over 350 by dinner time. Going from a low at 11:00 of 65, this was unusual for her.

We went over the day's events, the carbs, the exercize. It had to be the pop. It must not have been sugar free. We didn't let her have the re-fill when they brought it and she pouted. Its a good thing.

8oz of Coca Cola is 47g carbs. L eats 60g of carbs for lunch.
Lesson Learned. Taste the soda when you order it.

Tuesday, September 12, 2006

Family Team Highlight of the Week!

We are going to be featured in the weekly JDRF team letter! Here is what I wrote for them:

FAMILY TEAM HIGHLIGHT OF THE WEEK

On her first day of second grade last week, L was asked the classic back to school question, “what did you do last summer?” I would have expected her to answer with grueling details about insulin shots and blood tests, and perhaps a mention of her stay in the hospital where she got “to watch all the television she wanted”, but her answer was simple: “I went swimming, I went to the park, and I went to the beach.”

Isn’t that what we all want for our children, to have fun, to enjoy their summer, and to be carefree? L has proven to our family that even with a recent diagnosis of demanding chronic condition, this is possible. We are amazed and proud of her, after only three months of living with diabetes; L has taken on the management of her life without regrets, and has given the same positive energy to her fundraising efforts for the JDRF. She organized a “sugar-free” lemonade stand this summer, is preparing to have a garage sale of things she has decided she has outgrown, and is making recycled jewelry from the syringe caps to sell at a neighborhood store, all in the spirit of fundraising.

Our family is no stranger to fundraising. We have banned together on teams to raise money for other causes, and this year is no exception. Our family fundraising letter this year highlighted the JDRF as one of three events we are fundraising for this fall, and because we are so new to this cause, we set a modest goal of recruiting ten walkers and raising $1,000. So far we have 21 members of our team and have surpassed our initial $1,000 goal! We feel fortunate to have so much support from our community of friends and family. We are all looking forward to the walk in October and are passionate about helping to raise money to fund research to cure Diabetes.


Other highlights for Team Hi Lili Hi Lo:

Our blog
http://hililihilo.blogspot.com/

Westmart Grocery on Hwy 30 (L’s grandparents)
Sneaker sales!

Sunday, September 10, 2006

First Week of School

The first week of school was never this scary when it was me going back - but when it is my kid - geez...

My week ended with an anxiety attack on Friday afternoon when I irrationally decided my studio was on fire (my studio is near L's school) and paniced. Have fun with that one on me... I think I was a bit stressed out!

L on the other hand is worried about ghosts in the girls bathroom and a certain unruley boy in her class - a typical 2nd grader. She told me her new teacher is "strict" but isn't sure what that word means. And she managed to get in two after school activities (skating and dance).

What a trip this has been. Hope not to have anymore imaginary fires this week (or real ones for that matter!)

On another note, our JDRF team Hi Lili Hi Lo has done an outstanding job of fundraising so far! We have allready surpassed our $1000 goal. Now we need to find someone to help pay for our team t'shirts. Any ideas?

Tuesday, September 05, 2006

1st day of 2nd Grade

Okay. I thought I was prepared for this, but I have decided there is nothing I could have done to be completely prepared for the PANIC I felt as I turned and walked out of L's school this morning. She will be fine...She will be fine...was my mantra ALL DAY today.

I labored over her 504 plan. There were some dumb spelling errors, but in all I was happy with it. We put a supply kit together with juice boxes and snacks (Jiffy was not my 1st choice of peanut butter, but in T's defense, it does not have to be refrigerated). I just kept thinking I was forgetting something.

I was squirmy all day. Got to pick-up a half-hour early and waited on a bench feeling slightly sheepish. People were curious about L and had many kind and comforting words to pass on to me.

So this is the result. L wrote a what I did for my summer vacation report today and she told me all she could remember to write was this: "I saw the play Alice in Wonderland in the park, I had swimming lessons, and I went to the beach."

Well - if that doesn't just say it all!

Friday, September 01, 2006

Misconception #1

I had many misconceptions about what Juvenile Diabetes was when L was diagnosed. Mainly I thought she would have to give up eating sugar.

I try to be compassionate when someone says something to me that I know is not true, however lately I have heard some outrageous things.

This is the one that has been getting under my skin lately.

Myth: Some kids have a worse version of Juvenile Onset than others.

Fact: It is simple. The pancreas stops working. It is the same for all the Type 1s. It is my oppinion that it is "worse" because of the the way the individual's condition is managed.

Okay -- one more:

Myth: Someone with Type 1 can live a normal life. All they have to do is take two shots a day.

Fact: ...and five blood tests, and count every carbohydrate you eat against the dose of insulin you took, and time their exercise to carb ratio to make sure you are covered for the activity you are participating in, and carry around a kit with emergency shots incase their blood sugar levels drop low enough to put them into a coma. Normal?

Thursday, August 24, 2006

W*O*W

L has decided to do her own injections.
This is her second day doing this.

W*O*W!
(she is 7...)

Tuesday, August 22, 2006

504 plans

We are working on putting together a 504 plan for L before she goes back to school in a few weeks. We went to a ADA (American Diabetes Association) training seminar on this tonight.

A 504 plan is actually Section 504 of the Rehibilitation Act of 1973 and Americans with Disabilities Act of 1990 (ADA). It is a care procedure document that is created for a student with a disability that the school must follow while your child is in their custody. L goes to a private school, but we are still going to create a 504 plan with them for her.

The ADA has some samples of these on their website http://www.diabetes.org which are helpful. I also like a simple "at-a-glance care plan" that a company called Type 1 Tools makes www.type1tools.com. That one is not a 504 plan, but is great for having in the classroom, or for babysitters.

It is great that the ADA has training available like this. There were about 10 parents there, and it was great to hear their stories (we were the most recently diagnosed family) and get some advice.

On the other hand, I also feel the reality of what parentling a child with a cronic condition is like at evenings like this and feel a little depressed and overwhelmed afterwards. I prefer the days when it feels normal enough not to matter.

Friday, August 18, 2006

A+

2nd clininc appointment today - the doctor gave our family an A+!

Here are a few things we discussed:

1. When mixing insulin, you have to draw the short acting 1st (NPH) and then the long acting 2nd(Lantus). If you do it the other way around (as I have been) you contaminate the NPH and it becomes uneffective. Oops.

2. Add a vile of a long acting insulin (i.e. Lantus) and syringes to any school emergency kits.

3. ALL SUGARS ARE CREATED EQUAL. Count the Carbs.

4. There is still no cure for type 1 diabetes

5. Nothing can bring a proud tear to your eye like watching your 7 year old give her doctor an injection.

6. Don't worry, the numbers are good. Wait until the "honeymoon" period is over...

Monday, August 14, 2006

i heart guts!


This just in!
We might be working with genius artist Wendy B. of Weeber World to create an original design for a juvenile diabetes fundraiser! She does the sweetist drawings of internal organs I have ever seen with the funniest captions!
Check out her designs and buy stuff!

Sunday, August 13, 2006

Spoiled Insulin, Part 2

We started with the new insulin today. She had lower numbers, but still high at dinner.

A friend suggested that a growth spurt could make numbers higher - natural steroids. Interesting.

Giving it another day or two. We can review with the endrocrinologist at her two month check up on Friday.

stay tuned...

Saturday, August 12, 2006

Spoiled Insulin?

Two highs in a row tonight for apparently no reason. We were expecting lows after the ice skating lesson and we were off schedule - running an hour late.

Blood sugar was 345. Wash your hand and retest. 324. Test again. 317. Bedtime test. over 300 again. Test for Keytones - negative (relief)

For those of you who have been doing this for years this probably seems like we are crazy to worry. Maybe not. To me it is crazy not to.

Check the books. Maybe it is because her insulin isn't working. We've been using hte same bottles we had since we can home from the hospital. (T confirms this theory with the doc after her dinner dose)

We'll see tomorrow.
Change the insulin every 28-31 days from now on.
Learn by our mistakes.

Tuesday, August 08, 2006

Business Call #2

I felt much more confident when I dropped L off at camp this morning. She was excited to be there, and yesterday went so well that I was okay when I left. Besides, we would hear from her at 11:30 - her business call...

T missed her call. I missed it too. Actually I heard the phone ring, but I didn't recognise the number and I ignored it. Arrgh. What was I thinking.

She was low. 65.

She is supposed to drink a juice box and retest in 15 minutes - but this is a fuzzy area, because it was lunch time and she decided to just eat lunch. She decided this with the camp director - even though I had explicit instructions written on her care sheet.

I can't get mad about this. She is doing so well and really making decisions about managing this. But I am stressed. It is just how I am.

The camp told me they were impressed that T & I called back so quickly when he got her message. You guys are really good! But that is our job. That is the seriousness of the situation.

T checked and the Migo phones are in stock at the Verizon Store. Going over to the dark side and getting my kid a phone.

Monday, August 07, 2006

Letter From a Friend with Type 1

my sister's friend sent us this letter when L was first diagnosed. It is great advice from someone who lives with type 1

The pump is GREAT. It automatically shoots insulin every 2 -3 minutes, all day. Then when you eat, you "bolus", which means you push a button and it shoots in more. You only have to deal with a needle every other day. It's like an IV, sort of. You stick the needle in your stomach, pull the needle out, and you are left with a little tube in your stomach with a plastic part that you stick to yourself.

Then the insulin pump has a "plug" on the end of the tube that you can snap into the part on your stomach. It makes life very flexible, and it is easy to use when you participate in any non-contact sport. Most people don't wear it if they are playing football or doing karate, but other than that, you can wear it for ballet and everything. I highly recommend it.

I also highly recommend making sure L knows everything that the adults know. It's so important that she understand that SHE is in control of this, not her parents. She has to be the one to know how to test her blood sugar, give her shots, etc. I know it seems like a lot for a 7 year old to take on, but it really isn't. If she understands that this is *hers*, she'll be MUCH better off in the future.

The kids I know whose parents did everything for them grew up to be very bad, irresponsible Diabetics. The kids who were involved with their own treatment were good. If she views this as something the grown ups take care of, that is a bad thing. I know that since it's new and she is young, her parents have to help - BUT - getting her involved in every aspect as soon as possible is vital.

You can also make it fun, like buying her a fun watch with an alarm to remind her when to test her blood sugar, or decorating her glucometer in a fun way, etc. As soon as possible, her parents should stop doing tests for her (if they haven't already) and let her do it on her own. The same with shots. One way to make it less intimidating is to let L give the grown ups shots - obviously, don't fill the syringe with anything, but just let her practice stabbing you guys with the syringe. I promise it doesn't hurt ;-)

Another thing is, if she isn't filling her own syringes yet, have her check to
make sure her parents did it right - and occassionally do it wrong to see if she can catch it. Have her recognize how much she needs to take, if there are bubbles, etc. The last thing is, as she gets more and more "in charge" of things, have her parents keep guiding her and making sure she's on ther right track, but make sure she knows she's the expert and she's the one in charge. She should WANT to know what her blood sugar is, it shouldn't be a chore or something she does unwillingly. She should want to make sure it's good, etc. I know she seems too young to be learning all this, but she really isn't.

And another thing to emphasize is that if she can take control and learn everything, *she* can be the one to control how she cheats. There's no reason she can't have cake at a friend's birthday party, she just has to know how to calculate how much extra insulin to take. Obviously, work with her doctor on those calculations first, but usually what will happen is there will be a scale.

Mine is this: 15 grams of carbs = 3 units of insulin. So I can essentially eat anything, even when I was on shots, as long as I could figure out how many carbs it was, and then take insulin accordingly. With shots, it means extra shots, but that's ok. I can eat a lunch that contains 45 grams of carbs and I would take 9 units of insulin, or I can eat a candy bar that contains 35 grams of carbs and take 7 units of insulin. It all works out the same, it's just about carbs. But again, make sure her doctor is the one figuring this stuff out, because her scale will be completely different from mine. I'm just showing that it's possible.

Business Call #1

Dropped L off at an all-day camp today and we agreed that she would make a business call to her dad at lunch to review her numbers.

This was advice that a friend gave us and we decided to try it and see if it would be a good system for us to touch base during the day.

Here is the recap:
"Hi Dad. My numbers were 105 at lunch, 146 at snack. Okay. Bye!"

Well, that is one well adjusted seven-year-old!

Sunday, August 06, 2006

BYO-SFMS

Insulin - check
Syrings - check
emergency kit - check
sugar free mapel syrup - OMG...

This morning we decided to have brunch out - something we used to do often before L's diagnosis, and havn't done since. We had her carbs all figured out.
4" Pancakes, 17g (x2=34g
8oz Hot Chocolate 30g
bacon - 0g
sugar free maple syrup - og
for a total of 60ish carbs.

No wait for tables when we get there - good, because we all allready 1/2 hour past regular scheduled eating time (7:30) Dad is meeting us there, but he had to take a shower, so he is running behind.

I prepare the insulin injection at the table (and try to ignore the comments of the couple sitting next to us: "What are they doing? I think that is insulin. Oh really?...") and then remember I didn't think to bring the sugar free maple syrup.

We ask the server - no, they don't have any. T offeres to go to the market to get some. Cool. But I have to get some carbs into L soon - and I order her pancakes - they are a special item, so they will take 15 minutes. That might just work out.

Still, I'm worried that she is going to go low - maybe they have a sugar free vanilla soda and I can get something else for L while we wait for T to come back with the syrup. Nope. Plan B. I order her hot chocolate. Our server is getting annoyed. I call her back and order the pancakes and appologize for being complicated. She says its okay, but I know she wishes we would just leave...

T gets back with the syrup quickly. We order our food. I am still worried that she is going to go low. My Dad shows up. The server has to come back and take his order now too. This time its another server - our original one is ignoring us.

Some relaxing brunch. T and I decide we will carry Sugar Free Mapel Syrup in a flask from now on. One more thing to remember to keep in our kit.

Regular syrup is 54g carbs for 1/4 cup.
BYO SFMS.

Friday, August 04, 2006

Dieabeetiz

This is a book that Lili wrote the day she came home from the hospital

tipe one Dieabeetiz
by Liliana

I have dieabeetez. Me, Liliana Morrisey. Well, if you have tipe one you may have to take 5 finger pocks a day jest like me.

Here is another cind of shot. Its a insulin shot. A Inslin shot is wer your body is not working vary well and its not macing enof inslin.

And if your body is not making enof inslin, you may have to take a inclin shot2 times a day like me.

Dieabeetiz is avary seryis becus I had to go to the hosbitl.

The end

Thursday, August 03, 2006

Hello Muddah'


So, I took a big leap this week and let Lil go to a half day camp.
Walking away and leaving her in the care of the camp director and counselors was much worse than that first day of kindergarten. It was terrifying.

I am happy to report that she is having a great time! She met another girl at camp who has type 1: What are the odds of that? Oh - yeah, the odds are 1 in 400...

So, to ease my fears, I am thinking about getting her a "migo" phone. Me, the last native LA-ian to get a cell phone, is now considering buying one for my 7-year-old. I did some research and this one seems cool. Anyone out there have any feedback on this phone (not on my decision, please...I've beat myself up plenty about that allready!)

Wednesday, August 02, 2006

Diabetes Sucks


This is the best bracelet EVER! We ordered some from Hope Paige designs and they came today. They have the best med-alert jewelry I have found, and this really got me to smile!

http://www.hopepaige.com/

Tuesday, August 01, 2006

Bread & Butter



I am on a quest for a low carb bread. Breads are so high in carbs. Bagels are even worse! I ordered low carb bagels from Western Bagels but Lili didn't like them. I can't say I did really either - HOWEVER - I discovered they make "bagelettes" which are a perfect size for snacks and are only 16g carbs each! YUM!

http://www.westernbagel.com

My other recent discovery is Ciabatta bread - sandwich loaf style. There is a local baker here (Portland French Bakery) that makes it and it is 27g carbs for TWO slices. This is no huge discovery, most breads are 17g per slice - but those extra 7g carbs add up.

For the record, butter and cream cheese are 0g carb and while they are high in fat, they are essentially carb-free!

Monday, July 31, 2006

Join Team Hi Lili Hi Lo!


One month ago I was diagnosed with Type 1 diabetes. This means I have to take insulin shots every day, count the carbs in all my meals, and check my blood by pricking my fingers at least 5 times a day. If I had one wish, it would be to have a cure for this so I will never have to do these things again...

Our family has formed team Hi Lili Hi Lo for the JRDF (Juvenile Diabetes Research Foundation) walk to cure diabetes at Oaks Park on Sunday, October 1st, 2006.

Please join us (you can click on the link to the left) and help us meet our fundraising goals. Check our blog for updates, events, news, and stories!

Lili, Michelle, & Tod