Babysitters & Diabetes-- Tips for Parents!

As parents of  a child(ren) with diabetes, we know how managing the disease, while keeping our kids as care-free and free spirited can be. We know that sometimes there are just those weird numbers that creep up, for no apparent reason, and how to correct any given situation.

Babysitters, however, do not. We can sometimes forget that, just because we live, eat, and breathe diabetes every day... most other people, especially those with no other hands-on experience managing the disease, don't know the in's and out's of this disease.

A friend of mine had contacted me a couple of months ago, asking for help with this. She had basic knowledge of what Type 1 Diabetes was, because of the uncountable number of hours she and I had talked about Lenny's blood sugars, both day and night. She had taken on the responsibility of babysitting a type 1 diabetic child that lived close to her, full-willed and ready to learn whatever she needed to learn, to care for this child to the best of her abilities. She had no prior experience with this, outside of discussions her and I have had in the past. She was a little bit worried.

She had messaged me one day and gave me an idea for a new post. She said, "What would you tell a newly diagnosed family that needs to go back to work and find a babysitter for their Type 1 Diabetic child??"

I've thought long and hard on this one. It was a little difficult for me to answer, truthfully, because, well, I had never been in this situation. I have been a stay-at-home mom long before my son was diagnosed, and planned to continue to be a stay-at-home mom for a long time (unless my family needed me to go back to work).

Here are the tips I would suggest to any parent of a Type 1 Diabetic child, looking to go back to work, and needing a babysitter.

Educate. Educate. Educate.

• Basic Education: We educate the school nurses, don't we? Why would we not educate someone else? Even if that person claims to have experience managing other people's diabetes.... they don't have education managing your child's diabetes. I've said it on here before, and I'll say it again... just as every child is different, every diabetic is different. What works for one, may not work for another! Go through the basic diabetes education that we all learned while in the hospital with our precious little ones. Explain how carbohydrates, proteins, and fats affect blood sugar readings. Explain what high or low activity levels can play on a person's blood sugar. Tell them what ketones are; how they develop. You could even print out some basic information for them! Good reading material from a legitimate website can help drive home everything you try to teach them, and may even cause them to ask you more questions! You were educated on all of this before you left the hospital with your child at diagnosis so that the doctors knew that you knew how to safely manage this disease.... why should you send your child to be cared for by someone else (even family) without this basic knowledge as well?
• More Detailed Education: Once they have learned the basics about diabetes, how it is believed to develop, what ketones are and why they are so serious, what affects food, drink, and activity can have on blood sugars, now it is time to get down to the nitty gritty! Tell them about your child's specific needs. How does your child's blood sugars behave? What does your child participating in outdoor sports/activities do to their blood sugars, verses indoor activities? Does your child have hypoglycemia unawareness? Do they take insulin injections? Pump therapy? Does white bread affect their blood sugars differently than whole wheat bread? Are they on a specific dietary regime (gluten free?), or can they eat anything anyone else does, just need to cover the carbohydrates? If they are on insulin injections, what is their carbohydrate ratio? Correction factor? How much extra insulin do you give your child if they have a high blood sugar with ketones? The list goes on. The point is, give them as much information that you can for caring for your child in your absence as possible. Knowledge is power, but in this case, can be a life-saver!
• Write It Down! There is so much information we are going to be giving to these babysitters/care-givers, it'll be overwhelming! Writing it down will make it a lot easier for them to understand what to do in a given situation. Don't get me wrong, they may still need to call you at work sometimes to verify things with you, or ask a quick question. That is normal. How many times did we call our Children's Hospital Certified Diabetes Educators or endocrinologists to ask questions when we first started learning all of this? A lot, I'm sure! But, by writing it down, they have a checklist to go over, making it a little easier for them, so they don't have to call you at work every 2 hours to ask a question or get your opinion! 
• Leave Contact Information. If there is an emergency, they need to be able to get in touch with you quickly. If you don't have a cell phone, this is where I'd recommend getting one. Even if it is just a pre-paid cell phone, these things can be very useful! Even if there are no emergencies, but the babysitter/care-giver needs to get in touch with you on a matter that you may have forgotten to cover and/or write down, she/he still needs a way to contact you. Cell phones are great for this because she can easily text or call you and leave a message if needed, for you to respond back to when you get a chance. Plus, it will help her feel a little more at ease knowing you are just a phone call or text away!
• Encourage Her To Shadow You. Encouraging your babysitter to "shadow" you for a few hours a day, before releasing your child to her care alone, will help ease her worries and tensions. It will also be a great learning tool for her! She can watch what you are doing in certain situations, and learn from it!
• Learn By Doing. After she has shadowed you for a day or two, encourage her to get a little hands-on experience under your supervision. We, as parents, did this in the hospital didn't we? I don't think the Certified Diabetes Educators and endocrinologists we went to would have let us take Lenny home unless they had physically seen us give him shots of insulin, check ketones in his urine, and had an understanding of carbohydrate counting! Truthfully, I think if they had, it would have just added to the amount of stress we were already under being new to this lifestyle! The same can be said for leaving our children to the care of a babysitter or care-giver! Just as we were just starting out, they are sure to feel the ball of anxiety growing in their chest when they think of managing this disease, and what can happen. Put their mind to ease (and yours!) by allowing them to do some hands-on training under your supervision. By doing this, you can also show them each step of insulin injections, how to use the pump, how to count carbs, etc. People learn best by doing. Hands-on education like this really drives home everything you have verbally taught them, as well as all the reading material you have provided to them, making them realize, this is serious stuff... but very do-able.

By providing your babysitter with basic diabetes education, detailed education about your child, writing things down in an easy to follow list for her, leaving your contact information on how to reach you should she need you, encouraging her to shadow you, and providing hands-on experience under your supervision, the transition from staying home to care for your child to back to work with a babysitter, will become less stressful for you, and your babysitter!

What tips would you give to a family of a child newly diagnosed with Type 1 Diabetes, and needing a babysitter to return back to work? I'd love to hear them!!

Sick Days & Diabetes

Sick days and Diabetes.

Diabetes on its own, many parents say, is difficult to manage. Toss in a cold, flu, stomach virus, etc, and its like it's double trouble!

Good news is, just as with any other child, these common viruses and illnesses don't last forever! They come, they go, in their own time.

If you have diabetes, or your child does, it is extremely important to have a Sick Day Diabetes Management Plan, and keep all emergency supplies within close range. It is also very important to stay hydrated!

Hydration and ketones go hand in hand. If you do not keep your body hydrated well while you are sick, especially those with diabetes, your body has a harder time fighting off the virus. With people with diabetes,  it is even more important to remain hydrated while sick. Fluids help people with diabetes flush out ketones their body may produce when they are sick.

As you can see in the picture to the right, when someone with diabetes is sick, they can have a relatively good blood sugar level (191), and still have very large ketones (1.9). This is what my son's blood sugar level and blood  ketone level was last Tuesday when he came down with a stomach virus. This is why it is so important to check your ketone levels, whether via urine sticks or blood ketone meters, atleast once a day... and even moreso when you are sick and have diabetes!

Often times, ketones can be your first indicator that you are coming down with something, before the actual symptoms appear!

Here are some helpful things to have on hand should you get sick and have diabetes:

• Spare diabetes testing supplies, ketone sticks/blood ketone test supplies, extra insulin, pump supplies if you use a pump, etc.
• glucose tabs, juice boxes, or other fast acting carbohydrate
• BRAT diet supplies (Bananas, Rice, Applesauce, Toast), especially if your illness is accompanied with vomitting. These things may be light enough for your stomach to tolerate should you feel hungry but don't want to put anything too heavy on your stomach.
• Emergency phone numbers
• Endocrinologist/Certified Diabetes Educator phone numbers
• Emergency Glucogon Kit

Remember to test your blood sugar every 2-3 hours when you are sick, and test your ketones every 2 hours, and if you have ketones, call your Endocrinologist/Certified Diabetes Educator, or medical professional to find out how you should treat the ketones.Your Diabetes Management Team can be a great source to help you deal with illness and diabetes, and can help you take the proper steps to prevent an Emergency Room visit!

Don't forget, diabetes can be difficult to manage, and even harder while sick, but with patience, a level head, communication with your medical professionals, and persistance,  often times you can handle diabetes and sicknesses right at home. Just hang in there, and remember, viruses don't hang around forever!

"Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle"

"Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle" book.

I have been seeing this book being mentioned often in the online diabetes community. Judging by the reviews on it on Amazon, it sounds like a very informative, educational book about what it was like for people diagnosed with diabetes before insulin was discovered, the discovery of insulin, and the research involved. While, I have yet to read this book, I do personally plan to order it soon and educate myself on the miracle medication that helps so many children with diabetes live normal lives!

Have you read it  yet? If so, share your personal thoughts on it! Inquiring minds want to know!!

If not, you can get the book "Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle" on Amazon now for only $16.49.

What "Diabetes Awareness Month" Means To Me

What does Diabetes Awareness Month mean to me? Honestly, a lot. Too much to really put into words. On October 6, 2008, my son, Lenny, who was 3 ½ years old at the time, was diagnosed with Type 1 Diabetes. That day, and the many weeks that followed, was an emotional roller coaster for our entire family. As time went on, we learned how to accept and manage his condition, and look to the future.
Diabetes Awareness Month, to me, means helping others learn more about Diabetes, the differences between Type 1 and Type 2, how serious it can be, sharing the ups and downs of the disease with others, and embracing those you love with and without diabetes. Living life to its fullest.

What is the difference between Type 1 and Type 2?

Type 1 Diabetes:

In short, Type 1 Diabetes is an auto-immune disease. It occurs when the pancreas can no longer produce insulin. Insulin acts as a “key” to open your body’s cells to allow glucose to enter. When the pancreas is no longer able to produce insulin, the glucose you eat from foods and drinks can no longer be turned into energy the body can use. Over time, your body will start to give you “warning signals” that something is wrong.

Type 2 Diabetes:

With Type 2 Diabetes, your pancreas is able to produce some of it’s own insulin, however it may not be enough. Remember when I said that insulin acts as a “key” to open your body’s cells? Well, sometimes, if that “key” tries to open the body’s cells, but it doesn’t work, your body is unable to use the glucose you eat and drink, also leading to Type 2 Diabetes.

What causes Type 1 & Type 2 Diabetes?

The cause of Type 1 Diabetes is still unknown. Type 2 Diabetes is often times caused by living a sedentary lifestyle and being over-weight.

What are these “warning signals” you mentioned?

As stated on the Mayo Clinic website (www.mayoclinic.com) signs of Type 1 Diabetes include:

Increased thirst and frequent urination.
Extreme hunger.
Weight loss (often sudden)
Fatigue
Blurred Vision
If you, your child, or a loved one is experiencing these symptoms, consult with a doctor immediately.

What are some common misconceptions about Type 1 Diabetes?

Some common misconceptions about Type 1 Diabetes are:

Type 1 Diabetes is caused by eating too much sugar.
                 This statement is false. Type 1 Diabetes is NOT caused by eating too much sugar. It is caused by the person’s pancreas’ inability to produce insulin; an auto-immune disease. While it is advised to everyone to eat high sugar foods in moderation, it is not the cause of Type 1 Diabetes.

People with Type 1 Diabetes just have to watch what they eat, exercise, and take a pill every day.                     This statement is also false. People with Type 1 Diabetes are insulin dependant, meaning they must receive multiple insulin injections (often times receiving up to 5-6+ shots a day) or continuous insulin (via an insulin pump) to stay alive. They must also monitor their blood sugars closely, often times pricking their fingers up to 10+ times a day. Furthermore, people with Type 1 Diabetes can still eat anything they want, including things with sugar (I.e. cakes, pies, cookies, etc), they just need to give themselves enough insulin to cover the carbohydrates in those foods and monitor their blood sugars closely in case of a severe hypoglycemic or hyperglycemic episode occurs. For optimal health, it is advised to eat these things in moderation (but that should be done by everyone, not only people with diabetes), as well as exercise and monitor their blood sugars as recommended by their endocrinologist.

Is there a cure?

Unfortunately, there is no cure for Type 1 Diabetes. Many people believe, however, that people with Type 2 can cure their condition by losing weight and living a more active lifestyle.

What can I expect if my child is diagnosed with Type 1 Diabetes?

When you take your child to the pediatrician for concerns of Type 1 Diabetes, they will run some tests. For my son, they checked his blood sugar right in the office, and asked for a urine sample. Normal blood sugar range is 70-120; this range is the same for both children and adults. If the pediatrician believes your child has Type 1 Diabetes, you and your child will be sent to the hospital to stay for a few days while the doctors and endocrinologists there work to bring your child’s blood sugars back in range. This stay could be as short as 3 days, but sometimes, depending on how severe the case is, may be longer. While in the hospital, you will learn all about Type 1 Diabetes, how to take care of your child when you both return home, how to administer insulin shots, learn about the glucogon emergency kit, and so much more. By the end of your visit, you may feel overwhelmed with information. Just take a deep breath and take it a day at a time. Remember, you are still learning all about it and no one expects you to get it down to a science by the time you leave the hospital!

How serious is diabetes?

Diabetes is very serious. Potentially life threatening in fact! If managed poorly, potential risks include:

Loss of limbs
Loss of sight
Nerve damage (neuropathy)
Unconsciousness
Seizures
Heart and blood vessel disease
Kidney damage (nephropathy)
Even death
If a hypoglycemic (low blood sugar) reaction is left untreated, the person with diabetes could have a diabetic seizure, go into a coma, or even die.
If a hyperglycemic (high blood sugar) reaction is left untreated, the person with diabetes could develop Ketoacidosis (DKA), go into a coma, or even die.
Diabetes is a potentially life threatening disease, and should be treated as such.

*Facts about Diabetes

~Almost 24 million Americans are living with diabetes.

~Diabetes affects approximately 180 million people worldwide. The World Health Organization estimates the number of people living with diabetes will more than double by the year 2030.

~Diabetes takes more lives than AIDS and breast cancer combined--claiming 1 American life every 3 minutes.

~It is the leading cause of blindness, kidney failure, amputations, heart failure and stroke.

~Diabetes is expensive! Americans spend approximately $218 billion on diabetic costs.

*These facts found on the Diabetes Research Institute website: www.diabetesresearch.org


A personal note:

As a mother of a young child with Type 1 Diabetes, I would like nothing more than to help rid the world of this disease. Diabetes affects the whole family. The child has to suffer with multiple injections daily, the feelings of high and low blood sugars as they happen, the emotional effects of having the disease and feeling “different” than their peers, learning how to take care of their diabetes by themselves, learning how to count carbohydrates, and so much more. The parents and other siblings are in a constant state of worry. We worry about how the child is doing when they are in school, at grandma’s, or at a friends. We worry overnight if the child’s blood sugars are high or low. Many parents, including myself, lose a lot of sleep or have broken sleep patterns because they are up checking the child’s blood sugars throughout the night, administering insulin for high blood sugars, and waking the child up to give them a fast acting carbohydrate (like juice or glucose tabs) for low blood sugars. When they have a low blood sugar, especially at night when symptoms of low blood sugars can be hard to catch, we worry about if we will catch a low blood sugar in time, or if our child will still be here with us the next day. Diabetes is very hard to manage. Although some parents, children, and adults, may make it look easy to do, it is not. However, each and every child and adult affected with the disease has learned how to manage it, and learned to live life to it’s absolute fullest, because you never know what tomorrow will bring.

Bio:

 
  I am a happily married mother with two wonderful children. Our son, Lenny, is 5 years old. Our daughter, Mackenzie, is 4 years old. Lenny was diagnosed with Type 1 Diabetes at the young age of 3 ½ years old. It has been quite a roller coaster ride since his diagnosis, but the one thing I have learned since then is to live your life to the fullest and don’t take things for granted, because you never know what tomorrow will bring. Lenny, and all children with Type 1 Diabetes, are very brave children having to go through what they do each and every day. They are true Hero’s! Our family has decided to “Be the Hero” and become volunteer Diabetes Diplomats with the Diabetes Research Institute Foundation.

Will you help us in the fight against diabetes and find a cure?
Team Lenny’s Diabetes Diplomat Fundraiser Page: http://diabetesdiplomats.kintera.org/teamlenny
Follow our blog!: www.sugarfreecandyland.blogspot.com

Vigilence Is Key

The last few weeks has been a rocky road for us as a family. Battling lows, then battling highs. Now, currently, battling illness related ketones and consistant highs because of illness and diahrea.

I have kept something that has been going on with us "on the down-low" since the day Lenny fell in school. I only told a select few people from the "D community" of friends I have on facebook, not because I don't trust all of you, but just because, well, would you want to try to repeat a story to over 100 people? LOL!

I haven't posted much about this on my wall either. But, now that it seems the metaphoric storm is over, I wanted to share something with you.

As a mom of a diabetic parent, my #1 priority is to be sure my children are safe and healthy, in school, at home, and away from home.

That said, when I feel as if my "control" over my child(ren)s medical conditions is being limited, it upsets me.

First, let me start off by saying, I am fully aware of how school nurses must abide by laws, regulations, and policies set upon them. I am also very understanding about this. That said, I do not blame the school nurses involved with Lenny's diabetes management for why things previously were so difficult. I do not blame them for asking for doctor orders for the changes and "last minute decisions" I have had to make over the last couple of weeks to prevent lows from occurring, when I needed to deviate from the original Diabetes Medical Management Plan we had set up at the beginning of the school year. It isn't their fault, they were just following the laws, regulations, and policies they should be following.

Does this make it less stressful for the parents? NO! In fact, in my personal experience, I think it made me MORE stressed!

So, all that said, here is what has been happening over the last few weeks that I have said very little about on facebook or anywhere else.

As you all may recall, Lenny fell in school one day a few weeks ago. The nurse called me and told me about it, said he looked confused, so she checked his sugar and the meter read he was fine (if I recall correctly, maybe he was even a little on the high side). We played it out till snack, and by snack time, he crashed... hard. The next day, a similar situation occurred. Although, Lenny did not fall that time, he was still crashing hard, and told someone he felt low. They checked him and his blood sugar was 127. I told them to give him 2 glucose tabs because I was seeing a pattern with this, and he still had insulin on board, and without the tabs, he would crash again by snack like he did the previous day. They did so, then asked me later if I could get the school an order from the doctor for that. I did. This pattern had gone on for about a week and a half. I did make some changes to his basal and I:C at breakfast, as our endo suggested, and things worked out. However, I wanted to put him on a temp basal at lunch one day to prevent the dinner time crashes he was experienceing. He has lunch, then 40 minutes of gym, then 20 minutes of recess, then afternoon snack. All the activity after gym was causing delayed hypo reactions after snack, despite having a 15-20 gram carb snack.

Long story short, I wound up having to get the school 4+ doctor orders for various last minute decisions for, what I call, "preventative maintenance" purposes... in 2 week time frame. Some days it was getting 2 school orders in a day, or one one day and another the next. It was absolutely rediculous!

On one of the more high stressed days, I must admit, I exploaded on the school nurse for asking for another school order. I did apologize later, because, I know it is not her fault and she did not deserve it. She was just following orders/laws, etc. She was just doing her job.

I asked her, "What law states the doctor can not put "Per moms request" on a school order for medication"

It was the PA Code: Professional Nursing Law is what I have been repeatedly told regarding this, since MAY!

Since May, no one has been able to tell me where in this particular law I could find that it states doctor orders must specifically state dosages for medications. So, I went researching. The nurse did her own "investigating" too, by contacting school nurse consultants and such and talking things over with me.

For the last two weeks, I have been doing google search after google search. Speaking with other "D-moms" both within the state of PA and in other states, etc. I had also contacted places like the "Bureau of Special Education's Consultline, A Parent Helpline" , PA Bar Association, and tried getting in contact with an attorney just for the pure and simple reason of trying to have someone with legal knowledge explain this particular law to me and verify or nullify my understanding OF the law. I contacted an ADA advocate about it over the summer as well. I pulled out as many stops as I could to educate myself on this law!

Determined? Absolutely!

I have so many .pdf files on my computer regarding this, you wouldn't believe it!

Then I got a phone call from our endo late in the evening one night last week. It was like 7:30pm when she called... totally caught us off guard LOL! She apologized for calling so late but said she was still at work and received a revised DMMP form from the school nurse, with different "parameters" for hypoglycemic treatment. It kind of confused her because I had never mentioned to her what was going on. I told her that I was trying not to involve the endo's with it just yet until I learned more about this particular law and parental/child rights regarding it. I told her everything that had been happening, and expressed my concerns with the current DMMP plan we set up before school started. Told her that the current DMMP plan does not allow me to make split second decisions that could prevent a hypoglycemic event from occurring under the parameters set in place on the DMMP plan, that I needed more flexibility and control over situtations. Explained the hypo events we had had over the past weeks, and told her I can not continue to call Childrens Hospital on an almost daily basis over minor changes and tweeks that need made for "preventative maintence" purposes. I also told her that I had contacted an attorney to learn more about the law, from a legal specialist. When she heard that, she sounded very impressed that I had taken this route. She did ask if I had contacted an advocate from the ADA and I told her that I did back in May, but didn't feel confident in what I was told in regards to all of this, so I wanted to get it straight from an attorney to be 200% sure I knew what was going on with this law. She told me to keep her posted on my findings, and that this could very well help many other families!

I wasn't too happy that the school nurse had emailed a new DMMP over to our endo without talking with us first, I must admit. She did call me the next day though and mentioned it and said she just wanted to get the doctors input on it. The school nurses have been absolutely wonderful in regards to keeping Lenny's best interest at heart, and doing what needs to be done for his diabetes. Granted, I wish they had contacted me about this first, but, I also know that if the doctor DID sign that prior to my knowledge... it would have come to a screeching hault asap lol.

After discussing all of that with the school nurse, I understand why she did what she did, may not be happy with it still, but, I understand.

We had shared notes with the school nurse and vice versa to see where we could come up with a mutual agreement that would still be within legal limitations.

I told her that I could not understand why other area school districts were able to give the parents more control but our school district is being so particular about this state law. All schools in the state must still abide by that law if it in fact states things as they are understanding it. She said she would contact other area schools to see what they are doing to be able to work with the parents.

That leads us up to today.

From 8am till about 11am I was on and off the phone with the school nurse, discussing how we could find that much needed "happy medium". She had spoke with the other school districts and it helped her to come up with some ideas and alternatives that would still be within the laws and regulations.

Then, I told her about this .pdf thing called Diabetes in School Children with a DMMP plan and other sample forms that I had come across that was designed by the PA Dept of Health and Diabetes Prevention & Control Program. Told her that it has a line in there that states "Parents are authorized to adjust the insulin dosage under the following circumstances:_____". I told her that this is about a 4 page document, but is sooo specific about all aspects of diabetes management, including for children with Type 2 diabetes, those with Type 1 taking injections, as well as those on the pump, this one might be a better fit for us.

After discussing it all with her, and finding out that appearently this is the DMMP plan that many local D-parents use in the surrounding school districts and it works out for them, as well as is legitimate under the Nursing Law, she said she would feel comfortable with it, and to talk it over with our endo and if she feels comfortable with it, then go ahead and fill it out and have it signed so we can enforce it immediately. She said since she actually has that exact 54 page "book" that I got this form from (I emailed it to her for her to cross reference and she actually does have it... I seen it at the trainings before school started LOL!), that when she presents the new DMMP plan to her supervisor, she would be sure to let her supervisor know that this is where I received this specific DMMP form, that this is where I referenced it. She said she would tell her supervisor that since it was from the PA Department of Health and the Diabetes Prevention and Control Program, that she is comfortable with it. She said our original DMMP plan that we had set up before the school year started was actually excerpts from this 4 page one, that she was just trying to include the most relevant parts pertaining to pump therapy as well as hypo/hyper, ketones etc... but she didn't realize the detail that she was condensing. Honestly, had I been in her shoes and seen the vast amount of coverage that this 4 page DMMP included (in regards to children that take pills for their diabetes, etc), I probably would have thought the same thing she did, so, I really don't blame her for trying to condense it down to something more individualized.

Anyway, Lenny had his appointment today with the endo, and we went over all of this. We created a new DMMP using this 4 page form. I also gave the dr some of the information I had collected in my research over this law, as well as emailed her the rest of my information regarding it after I got home. Hopefully this will help other parents, atleast in the state of PA, in the future. All has been worked out, and I think things should go more smoothly now.

As I get a chance, I will post links on another page on the blog to my findings regarding the PA Code: Professional Nursing Law, as well as other documents that may help parents in the state of PA gain a little more control over situations with their childs diabetes in schools.

As for Lenny's diabetes check up. His A1C was 7.9. Thats the highest it has been since diagnosis... however, he has had several days with ketones over the last 3 months, due to illnesses since starting school. He also had ketones this morning as well, so, taking that into consideration, he is doing pretty darned good! They gave us some angled infusion sets to try out to see if they would help open up some more site locations for us as well.  All in all, a pretty darned good day, even with the ugly show of Ketones first thing in the morning!

I don't think he will be going to school tomorrow though. He woke up at midnight tonight with a very bad case of diahrea. This explains the ketones yesterday.....viral infection, again.

So, the moral to this story is... Vigilence and Determination is Key. Do your research, stick to your guns, unless you find out for sure, without a doubt, that what you want to see accomplished is against the law. And, don't forget, communication and cooperation with the schools is very very important. We can't just go in there guns-a-blazing. We must be able to try to work with them, keep communication lines open, but yet, keep our children's needs and concerns at the forefront. It's yet another balancing act we must learn to manage.


     In Control: A Guide for Teens With Diabetes (Juvenile Diabetes Foundation Library)

"Us vs Them" Controversy

A few days ago, I read something on facebook, posted by another "diabetes community" that I occationally read. It was someone's opinion of the "Us Vs. Them" Controversy that, I guess, appearently is flooding the online diabetes world.

I don't really hear too much about this controversy, except from time to time.

To my understanding, the controversy (atleast from what I am understanding as far as some of the things I have read over recent months) is Type 1 (us) vs. Type 2 (them). Is it, who's disease is harder? Which disease is easier? Which is more serious? I don't know.

Honestly, my opinions of this controversy are simple.

I personally don't think the controversy is over which is harder, which is easier, which is more serious, or anything of that nature.

I think the hardest thing, for Type 1 parents, like myself, when hearing about "diabetes" in general, is just that... the generalization.

You see on the news, tv commercials, and a vast amount of information on the internet about "how to prevent diabetes", "how to control diabetes", as well as various products and services surrounding these same topics.

What do all these things have in common? Generalization.

Have you ever wondered, why so many people in this day and age really don't know that much about either type? Why, when people say "oh, my little boy is diabetic", they instantly think about type 2 and obesity? Why so many people believe the misconceptions regarding diabetes (type 1)?

It is because the media generalizes diabetes, instead of recognising the diseases as seperate.

No, I don't really think either one is harder or easier. While yes, in the "bad days" phases of managing my own son's diabetes, I fall victim to thinking that way. But, I do feel bad for those with Type 2, and Gestational, and, the ever so rare Type 1.5 (yes its real! Click the words to learn more!). However, I think each type also comes with its own set of worries, frustrations, fears, and complications. Some may be similar to what we, as parents of type 1 children, go through, some, may not be. Who knows. I can only speak from the personal experiences I encounter as a mother of a type 1 child.

However, I do think, if the media would differenciate the different types, instead of generalizing "diabetes", it would not only help the awareness factor for diabetes as a whole, but also the individual types, possibly help parents across the globe "see" the signs of type 1 before DKA sets in, educate the public more on the severity of the disease(s), and help lessen some of the frustrations many parents experience.

What frustrations am I referring to?

Just to name a few...

1) The looks we get when telling our children "no" in the candy isle.
2) Some of the questions we receive regarding our child's medical condition. While, deep down we know these questions are just because they don't know, and are trying to learn... for some parents, having to answer the same questions a million different times because the general public is left oblivious about the disease, because the media doesn't communicate the differences, causes, management care, etc properly, can become tedious, tiresome, and yes, even frustrating at times. I remember when my son was first diagnosed, how many times I got asked the question "did he get diabetes because he ate too much candy?" For a while there, that question used to get under my skin, not so much because of who was asking the question, or the question itself, but just the sheer fact that so many people are so unaware of this disease. It doesn't bother me as much anymore, and instead, now I am at the point where I encourage questions like these, and many others... in an effort to help teach people the true, cold hard facts, about the disease.
3) The frustration of hearing about another child being diagnosed, but diagnosed while during DKA. I know for myself, had I been informed properly about diabetes, the types, the symptoms, etc. early on, I probably would have been able to recognise the symptoms sooner. Maybe not, but, the possiblity would have been greater. Maybe my son's blood sugar wouldn't have been 593 with very large ketones and an A1C level of 12.5% at diagnosis, had there been enough media attention to the disease, the individual types, and their "causes" and symptoms.


So, do I have the "Us vs. Them" mentallity? Some may think so, but I'd like to think not. I'd like to think my mentallity is more about how to educate the public more on the different types, instead of lumping all the different types of this disease into one category. I think by generalizing it to the public, it actually causes more confusion, less awareness, and ultimately, possibly delaying early detection for children.

Those are just my thoughts on this matter.

What are your thoughts?

Diabetes Awareness Month is approaching

Diabetes Awareness Month is approaching us quickly. I have several ideas for blog posts regarding Diabetes, what it is, pre-diagnosis symptoms, and much more, however, I'm not sure I have enough ideas to blog about for every day in the month of November! LOL!

I need your help!

Let's hear what type of topics YOU would like to see discussed here. If you or a loved one has diabetes, what would YOU like our readers to learn more about regarding diabetes? What struggles would you like the general public to realize that you or your loved ones experience? What knowledge would you like the non-diabetic community to learn more about? Let's hear it!

Also, I would like to ask you to please help spread the word about our little blog. The more readers, both people with and without diabetes, we have following our blog, the more people we can make aware of the disease, and educate. That's originally what my "plan" for this blog was all about... although, I know at times I tend to ramble about what's going on with Lenny's diabetes.

How would you celebrate?

This is a thought I find myself thinking about relatively often.

How would we celebrate the day we heard the news that they have found a cure for Diabetes?

How would we celebrate the day our child received that cure?

Every time I think about these two questions, I always manage to come up with a different answer.

I tease my husband all the time and tell him that "The day they find a cure, I'm going to go to ever house in Cresson and give whoever answers the door a big hug and kiss... walk down the main street and do the same to every person I run into"

Realistically, yeah, that probably wouldn't happen LOL! Though, I do, realistically, envision myself jumping up and down screaming at the top of my lungs! I see myself feeling an overwhelming variety of emotions... mostly happy emotions, like the ones that hit you to the core of your being. The kind of happy and excited emotions that make you cry uncontrollably.

The day my son receives the cure... how would we celebrate?

Sometimes I think we would take him out to The Meadows frozen yogurt shoppe and just let him go hog wild, not hold him back on the amount, type, or kind of frozen yogurt, ice cream, or custard that he wanted. Let him eat absolutely anything and everything he wanted, any time of the day. Yeah, sure, he'd be throwing up later that night.... but seeing him being so care-free, worry-free, and enjoying his "back to normal" life will be SO worth the "puke clean-up duty" LOL!

I also think after our initial "family celebration", I would probably call up/contact on face book, some of the local D-Moms I have met, going through the same things, and plan a huge "DIABETES FAMILY" celebration as well, getting everyone together to celebrate our achievement on "kicking diabetes' butt"! Everyone living with diabetes, whether its the individual, or you are taking care of someone with it... deserves to celebrate the day we can finally tell diabetes to GO AWAY and NEVER RETURN!

I would also reminisce, and say a little prayer, to those who have lost the battle over the years. Just this week, as I was reading some of my face book friends status updates, I learned that diabetes has claimed the life of another innocent child. She was 13 years old, and died of the "Dead In Bed Syndrome". She left behind 2 wonderful, loving parents, and a sibling who will always love and miss her dearly.

After finding out that news this week, I literally cried for 30 minutes. I cried for the family. I cried for the poor innocent child. I cried because of the reality that struck. I cried for my child. I cried for your child. And, I cried because of pure anger toward this disease. We need a cure.

So, if you were told that the researchers have found a cure for Diabetes... how would  you celebrate? How would  you celebrate the day your child received that cure?

I am really looking forward to hearing everyone's responses!

A day of low bgs, and a fuming conversation with a McDonalds manager

Let me start from where I left you all off last night, at the midnight check.
So, midnight rolled around last night and his blood sugar was 115.  WOOHOO! GREAT! However, I still anticipated a low, but not until atleast 5am or breakfast time.

3am rolls around. 69. Sigh. Gave him 2 glucose tabs and rechecked at 3:30. He went up to 81.

I weighed the pros and cons on that one. Overnight, his endo's don't want him to be lower than 80. I let it go and rechecked him at 4:15am. 136 bg.

Oh yeah! Maybe we got this thing whipped!

Breakfast was at 7am and he had his usual breakfast that he almost always has. His blood sugar was 125 at that time. He was dosed at 7:15 am.

Again... YEAH! We're back on track!

Or so we thought.

8:45am I get a phone call from the school nurse. "I just wanted to call and let you know that Lenny fell in the hallway. He didn't hit his head or anything, but he seemed confused, so I checked his sugar. It was 187."

My first words...."thats not high enough an hour and a half after eating breakfast! Keep a very close eye on him for a low." I was on the phone with her till about 9:15 or 9:30. She said she has him sitting right next to her right now (in the classroom) and as of that moment, he seemed like he was fine. I said, ok, just watch for a low, because it sounds to me like hes going to crash.

10am snack time comes around. At about 10:20am I get a phone call. She said his blood sugar was 51 for snack, she gave him 4 glucose tabs, waited 15 minutes and rechecked him and he came up to 135. Ok, I never seen a jump like that after correcting a low then rechecking 15 mins later, but, I wont complain! She said she gave him a 16g carb snack (goldfish crackers) and dosed him for the snack carbs. Not a problem, worst case scenario he will be high at lunch.

Lunch time is at 12:15pm.  By 12:20 I hadn't heard anything, so I called the school. I feel bad cuz I interrupted the lunch time (head nurse) nurse's lunch when I called, but I just had to check on him. She said his blood sugar before lunch was 230. I asked her if she had any idea about the activity level in the classroom this morning to see if that crash could have been caused by that. She said no, but they typically dont have much activity during that time... the teachers keep things pretty routine and structured, but, she said she'd see if she could find out and give me a call to let me know. There was no change in routine in the classroom.

So, then I get a phone call at 1:40pm... right before gym class. His blood sugar was 289. HMMM. Only a 59 point increase since lunch. Something's not right. I told her its not as high as it should be an hour and a half after lunch. He should have, at the very least, been in the 300s, if not 400s by then. I told her, again, watch for low symptoms. Actually, I BEGGED her to keep an extremely close eye on him during gym class. Gym class is 40 minutes long. I also asked her to call me back for every check there on after.

She called me back at 2:20pm, for his after gym class blood sugar check. He was 234. I said, well, that was a good 55 point drop. She asked me if he could go to recess because he was BEGGING to go LOL! I hesitantly said yes, go ahead, and begged again to keep close tabs on him. I told her, again, I'm expecting a crash again by the end of the day. Recess is 20 minutes long.

She called me back at 2:50pm for his before afternoon snack blood sugar reading. She said he was 136.

I told her he is most definitely going to crash by the time he gets home at 3:45pm-ish. She said she gave him the chocolate covered pretzels snacks (100 calorie snack pack... 16-20g carbs) already, I told her to give him the cheese stick I put in the diabetes back that morning. He WOOFED that down fast... she said it was like in 2 bites HAHA! I told her to go ahead and bolus for the snack carbs, that I was going to call my husband and see if he could pick Lenny up from school instead of putting him on the bus because I was scared he would have a severe crash on the bus, then I'd call her back to let her know. Hubby was already having to pick up our daughter from Head Start after he got off work, and should be able to just swing by and pick him up as well on his way back home. The school is a 2 minute drive from my house. Literally.

So, called Hubby, he said he would but to verify that he could with the school because the school doesn't like last minute decisions on that. So, I called the secretary and asked her if it was ok, told her its kind of an emergency situation because I'm scared to let Lenny ride the bus today with the way his blood sugars are acting. She said its fine, just have him stop by the office to write a quick note stating Lenny would be a "walker" today. I said ok. Called Hubby back to let him know. Then called the nurse back to let her know, appearently the secretary had already told the nurse by the time I called back. I told the nurse "If my husband isnt there by 3:30, would you be able to do another quick blood sugar test just to give me an idea of where he stands, and call me back. She said she would.

I get a call back at 3:30pm on the nose. His blood sugar was 71. 40 minutes after eating snack he dropped another 65 points. I asked her to give him 2 glucose tabs.

On the way to my daughters dr appointment I checked his blood sugar in the car again at 4pm. He was 124. YAY!!

We wound up eating dinner late because of the dr appointment and traffic, which really had me worried. But, at 5:42pm his blood sugar was 129. WAHOO! For dinner, we went to McDonalds. He had a kids meal Hamburger and apples meal. No drink because the morons working there messed up our order... AGAIN! 4th consecutive time in the last 4 times we've been there!

They gave him a REGULAR coke instead of a DIET coke like we asked. Hubby said he even checked the screen to verify they put DIET on the order. So, needless to say, I called them and spoke to the manager!
I told the manager "Whoever you have working the drive through window seriously needs to be FIRED! The last FOUR TIMES in a row... FOUR CONSECUTIVE VISITS to your establishment, the person working the drive thru window has messed up my 5 year old, type 1 diabetic child's order. The last TWO times, she screwed up his drink. This time she gave him a REGULAR coke instead of a DIET coke like we requested. The last visit, she screwed up his meal as well as gave him REGULAR, SWEETENED iced tea, instead of UNSWEETENED iced tea." She proceeded to ask me if I had a receipt. I went searching through all the bags, pulled absolutely EVERYTHING out of those bags looking for a receipt. No receipt!

I said "No, she didnt give us a receipt... but she sure as hell gave us more than enough straws!" (yeah, she had 6 straws in the bag, plus 4 on our drink carrier!) She asked me to tell her what the order was and she would try to do some sort of a systems search to see if she could find the order. I told her, she did hear search, ironically, she couldnt find our order in the system. She said the only thing she could do, and will definitely do, is talk to both the workers that could have made the mistake, and stress the importance of correct orders, and explain to them that mistakes like this could severely harm a person with diabetes.

I said "Look. The last time I called and complained about this, my husband was already on his way down there to complain. You guys gave us 2 free kids meal tickets for our troubles. I don't give a crap about that. When you go talk to them, make damn sure you specify to them that this disgruntled customer specifically says "You are damn lucky I check my son's drinks before just handing them to him. Had I not done that, your mindless, unthoughtful mistake could have landed him in a hospital in a coma tonight. I assure you, if that were to happen, if it EVER happens, while my son is laid up in the hospital fighting for his life, my ass would be on the phone with a lawyer and suing someone!"

She said she understands my position, and would be doing the same thing in my position, bla bla bla, and said she would be sure to express the seriousness of their mistake. Am I feeling very confident about it? Um, no.

Anyway, after that explosion...

8pm snack time rolls around. Lenny's blood sugar was 71. Hubby gave him the normal snack (yogurt, hes been getting this same snack for MONTHS because it works so well for his overnight numbers), as well as a cheese stick to try to hold him through the night.

Midnight... 142! WAHOO! Did a 0 bolus (no insulin) just to keep the "check bg" alarm from going off throughout the night.

3am.. 107 bg. Not what I would call spectacular, but ok. Still expecting a low to show up either at 5am or 7am. Did another 0 bolus to make sure the pump would shut up during the night lol.

It is now 4am. I will be checking his sugar again in an hour to see where he stands.

I will update you all on his status tomorrow night. I do have a game plan for this if this decides to continue throughout the day tomorrow.

If you have any topic ideas in mind that you would like to see discussed here, please feel free to leave me a comment and let me know!

Something Interesting I Wanted To Share!

This morning I decided to call Children's Hospital of Pittsburgh and talk with the nurses on call about finding an alternative location for Lenny's pump sites. After explaining to her that his butt is forming hard spots from using his butt all the time for site changes, and his blood sugars are running high because of it, as well as the incident that happened last night (which I will go into in a few minutes), she suggested I try the back of his arms. I also asked her about this cream that so many other mommies with diabetic kids have told me about that numbs the area.

She told me the name of a couple different creams on the market... but then, she told me about these wipes that also help with pain relief. They are called ReliOn Alcohol Swabs with Pain Relief.

She says its not supposed to be a strong feeling of numbness like some of the creams out there, but, unlike the creams, there is no 30-45 minute waiting period for it to work. You wipe the area, the alcohol in them disinfects it, wait till its try, the benzocaine numbs the area a little, then proceed with putting the site on.

She suggested trying that first, at least until it is time for his next appointment at the end of the month. So, we shall buy some and try it out. Hopefully this helps and will not freak him out so much the next time I try to put the site in a different area other than his butt.

As for the events of last night. When we came home, the kids played and ran around the house till bedtime, with the exception of eating bedtime snack. At bedtime snack his blood sugar was 67. Gave him ONE glucose tab, and his nightly ritual bedtime snack.... yogurt. After he ate and was dosed, the kids went back to running around the house like a mad man. I actually expected him to be on the low side for the midnight check. Midnight rolled around, his blood sugar was 315 at the first check. That didn't seem right, so I rechecked.... 323. Checked ketones, no ketones. Gave a correction and waited.

At 3am I rechecked him, figuring he'd come down. 404 at 3am. Checked ketones with the Precision Xtra Blood Ketone meter. It read 1.3 which means moderate ketones... almost large though. I figured since he had a drink of water before bed and still hadn't peed the bed, I would wake him up to go pee, to help prevent him peeing the bed. While we were at it, I checked urine ketones. They read between small and moderate. Hm, what a predicament! Which reading do you go with? I decided to go with what the Precision Xtra meter said, since blood readings are more accurate than urine. I gave him 0.5 units more than the meter recommended for the high, to cover the ketones, and administered it via syringe. Decided to do a site change at that point also (yep, site change at 3am, sigh).

After removing the old site, what do I see? A bad kink. In the photo above, you will see something hazy looking inside the red circle (sorry, did the best I could to get a good shot of it lol). For those of you who are not familiar with diabetes and pumps, or those of you who may be familiar with diabetes, but not yet on a pump, that little hazy looking thing in the red circle is the cannula. The cannula is the part of the site that remains under the skin. The way it works is when you tell the pump to inject X amount of insulin into the person, the insulin you request runs down a tube/line, into the cannula. From the cannula, it is then sent into the persons body. Sometimes the cannula can get kinked. Kinks are caused by various reasons. This particular kink tonight was due to the location of where the site was, was getting a hard spot. If you notice in the photo, the cannula is almost flat. This prevented him from getting the much needed insulin he needed, for several hours. In turn, it caused his blood sugars to rise after bedtime snack to 323, and because it still wasn't correct by 3am, caused his blood sugars to continue to climb despite the correction, and in turn, develop ketones.

I hope all of that makes a little sense. If you have any questions, please don't hesitate to leave a comment and ask!

After doing a correction at 3am via syringe, and doing a site change, by breakfast this morning, he crashed... hard. His blood sugar before breakfast was 51 at 7:15am. Gave him 2 glucose tabs (because I don't usually like to give him the full 4 before a meal or snack because normally when I do, he has a bad rebound high), rechecked him 20 minutes later. He only came up to 58, so, I gave him 4 oz milk and rechecked another 20 minutes later. He came up to 177 then, so I let him eat breakfast. I called him off school today because I didn't feel comfortable putting him on the school bus with an initial blood sugar of 51. I was afraid of him crashing on the school bus. I know he has an aid that gets on the bus, follows him around school, and rides the bus home with him, but, I figure it is better safe than sorry.

Now it is almost snack time. I will blog later on about how the rest of his day goes.