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...

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.

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

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.

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.

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.

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

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.

JDRF Walk Oct 1st 2006

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

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."

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/

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

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

Team Hi Lili Hi Lo T-Shirt Design!

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.

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!

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?

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!

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?

W*O*W

L has decided to do her own injections.
This is her second day doing this.
W*O*W!
(she is 7...)