Back to the Drawing Board

As most of you know, my son is a Type 1 diabetic. We found out three years ago, and we have made it a part of life and are dealing with it. This is a completely manageable disease, and I am thankful that none of my kids have anything worse. All I need is some good counting skills, a little sense in what we eat, and a good doctor to write the prescriptions I need for Little Man. Sounds easy enough, right? You would think!

All of those things have been fairly easy to come by, except the part about the doctor. When Little Man was first diagnosed, we were referred to a doctor who practices about two hours away from us. "Ummm, can't we get anything closer?" I asked our pediatrician. "Nope. He's it." WHAT?? What do you mean, "He's it."? That made no sense to me. There are doctors on every street of our town - OK, practically every street. Why did I have to drive two hours to see this guy.

Apparently, pediatric endocrinologists are hard to come by. They are few and far between in my state. The doctor we saw was the nearest one to us. So we began making the drive, and we did so every three months for two years. BUT, yay hooray, a new lady doctor came to a town that was a little closer to us, so we switched to her to save a little time in driving and money in eating out.

We LOVED this new doctor, because, not only was she about thirty minutes closer, she had nice office staff and her practice was in a small building with the parking lot right in front of the door. Yeah, I know, that doesn't really sound too thrilling to all of you. But, with our last doctor who had his office inside of a hospital, we had to park several blocks away and make the trek inside through rain, shine, heat, cold, and traffic to see him. So a parking lot right in front of the small building was certainly on my list of things I liked about this new doctor.

We have seen her for a year now, and we really like her. She has been very helpful, and she is always very nice. But go figure, she's moving! When I found out last week that she would be moving to another state, I was very disappointed. Her reason for going? You can't make a profit in pediatric endocrinology in this state. Figures.

So now, I am looking to make the drive back to our old doctor again who is two hours away, if he hasn't got so many patients now that he can't take us. If that is the case, We're looking at a minimum of two and a half hours for a drive every three months to go see a completely new doctor.  Now, I know most of you are probably thinking, "So just make a day of it. It's only every three months." But if you have never made that drive over and over and over and over again, and if you have never paid for the gas to go four times a year, and if you've never accounted for the meal that you will be eating out every trip (because an appointment that far away always means you will be there around a meal time), and if you've not thought about the full day that it takes you away from a job or, in my case, my other kids and homeschooling, you really can't understand what a burden this is. At first, it didn't seem like a big deal. We'd just make a day of it and make it fun. But after you have made that trip so many times, and you realize there is no end anywhere in sight (because an adult doctor won't take him until he's at least 13), it becomes a great burden. I was not looking forward to jumping back in that boat again.

What really gets me is this. Why is it that, in every other field of medicine, there seem to be so many doctors that you can take your pick from the ones available? Why is it that colleges are filled to the brim with upcoming doctors and nurses of every kind ready to tackle heart disease, cancer, brain tumors, back pain, general practices, and everything else in between? Why is it that I can find a doctor for any other problem I or my kids or husband may have, including pediatric issues, except when it comes to a pediatric endocrinologist? Why is everyone lined up to be every other kind of doctor except a pediatric endocrinologist?

I know my son is not the only Type 1 diabetic around. And the endocrine system is made up of WAY more than just the pancreas, the problems of which cause diabetes. I just do not understand what it is about this field of medicine that makes upcoming doctors steer clear of this field. I cannot understand why, in my state, we have only a hand full of these doctors, and most are more than five hours from me.

So now, I am back to the drawing board. I will be calling tomorrow to try to get an appointment with our previous doctor, and I am just praying that he will take us back again.

So the lesson to learn here is this: If any of your kids are interested in going into medicine, you should really encourage them to become a pediatric endocrinologist. They would be guaranteed to have a full patient load immediately. There is a great, great need for more of these doctors.

My Soap Box

Generally, I don't use my blog for negative things, like gripes and complaints. But today, I just have to get this off my chest.

As some of you know, my Little Man is a Type 1 diabetic. He was diagnosed when he was 6 1/2 years old, and they immediately whisked us away to our local hospital to get medical care and necessary training on how to best manage this disease that he would now be living with for the rest of his life. One of the main things we were taught was in regards to his food. My Little Man is allowed to eat pretty much anything he wants, and can eat just like a normal kid, as long as we count how many carbohydrates are in each of the foods he eats. The amount of carbohydrates he eats determines the amount of medicine, insulin, that he gets. If he gets too much insulin, his sugar could drop too low and he could pass out and go into a coma. If he doesn't get enough insulin, his sugar could go too high and he could end up very sick or passing out and going into a coma. Neither is an acceptable option for me. So counting his carb intake is very necessary to be sure he gets the right amount of insulin and stays healthy. All that sounded simple enough. But...

As we very quickly realized, counting carbs is not as easy as it may sound. Oh yes, I know how to count, and most foods have their nutritional value clearly posted on the package for my convenience. If I buy any pre-made foods from the grocery store, it is right there on the label. The only problem is, we don't eat too many pre-packaged foods for me to take advantage of that option. Our nutritionist sent me to a fantastic website, Calorie King, where I learned how to add up the carb contents of each ingredient I added to a recipe, and then I could simply divide it by the number of servings the meal made. It was and is very time consuming, but I refer to it often and it is a very valuable and reliable resource. So now, when I cook at home, I have no problem adding up the carbs my Little Man is eating, and we can give his insulin accordingly. Sounds simple enough. But...

One day, after church one Sunday, we decided to go out to eat. We picked Applebee's, because we like the food and we were SURE they would have the nutrition facts for each of the foods on their menu. They are, after all, a major food chain. But when I asked the waiter about it, he looked at me like I was speaking another language. Apparently, not too many people care to look at the facts about their food. Generally, when people are going out to eat, they plan to indulge and deal with it later. But I HAD to deal with it NOW, and I was unable to. He told me I might be able to look online to find the info I needed, but, DUH, I wasn't at home with my computer and, at the time, I didn't have a cell phone that had data. I did try to look up what I needed on Brient's phone, but it was so slow, and, by the time I even found the web site, our food had already been eaten and we were asking for the check. UGH! I was so aggravated by the time I left Applebee's, because I honestly thought that a major restaurant such as that would be able to provide the information that I really needed to be able to eat there. So, I don't take my son there to eat anymore.

I soon found out that my problem wasn't limited to that one restaurant. It happened again and again and again at large chains and small mom-and-pop places. It has become such a problem that Brient and I rarely eat out if we have kids with us. Since I have no idea the ingredients in food prepared by someone else, I have no way of knowing how many carbohydrates are in it. There are three restaurants that we frequent: McDonald's, Subway, and Taco Bell. Subway is a great place to eat. But, McDonald's nor Taco Bell are my favorite places to eat, and they both lack in the way of healthy foods. However, ALL THREE of these places clearly display the info that I need, and, because of that, I will continue to spend money at their places of business.

I am so absolutely angry that my family is unable to just drop everything and go out to eat anywhere we want. Before I can plan to have dinner out somewhere, I first have to sit down at home, find the restaurant online, and hope that they have what I need on their web site. And most of the time, I can't even find it there. (Like tonight, for instance, when I tried to find the nutrition facts for a local pizza place - Johnny's Pizza House. They have nothing online.) Many restaurant foods are listed on Calorie King, and for that I am thankful. But not everything is available. It is so frustrating and tiring to have to plan every single detail of my days before I can make a step.

Restaurants need to clearly post the nutrition facts for each and every food that is offered on their menu. There are many, MANY Type 1 diabetics out there, along with many other people with special food needs, that need to have facts about their food before eating it. I am not the only one out there who needs this.

So, until I am able to get what I need out of these major chain restaurants, I will be spending my money elsewhere, like McDonald's, Subway, and Taco Bell. These other restaurants will not get my business until they earn it back by providing me with some nutrition facts.

I'm getting off my soap box now...

Lenny the Lion Video Contest

A few weeks ago, Medtronic, the company that manufactures Little Man's insulin pump, sent out an e-mail announcing a contest that they were holding to introduce their new spokesperson - or should I say "spokes-lion". The company wanted a kid-friendly character to help teach kids about diabetes and insulin pump therapy, and they were doing this in the form of "Lenny the Lion." So the contest was a way to introduce Lenny to kids who have diabetes and use or were thinking of using an insulin pump. The rules said to make a video of yourself and Lenny the Lion, and send it in to Medtronic. They would then take all the videos received and make a short list. That list of videos would then be posted to youtube for everyone to see and vote for, which would then decide the winner.

And I am so stinkin' excited to tell you that WE MADE THE SHORT LIST!! Our video is now on youtube, along with 17 other videos that made the list. Now, we need your help!! We need votes! Please visit the youtube link and watch our video. Click on the "I Like" thumbs up button below the video. (It will turn green.) Once you do that, you have voted!

By voting for our video, or any of the other great videos for that matter, you are doing a couple of things. First, you are encouraging some great kids who worked REALLY hard to make video that will, in turn, be used to help other kids with diabetes better understand this disease and be able to make a more informed decision about using an insulin pump. And second, you will be helping someone to win a great trip to Disneyland in California!! So please vote!!

And if you'd like to help further, please consider posting the link to your blog, facebook page, twitter, e-mail, or anywhere else, and encourage others to vote, too. Voting will last until April 30, and the winner will be announced on May 5. So there are still a few weeks left to vote. You can vote daily, so don't forget to come back and vote again.

Thank you so much for your help! Britches and Little Man worked very hard on this, and, whether we win or not, I am so absolutely proud of them!!

http://www.youtube.com/watch?v=Cvnl6u3j7Q4

Are You Part of the Herd?

Many years ago, when my first child was born, my husband and I, like most other people, wanted to be the very best parents we could possibly be. So we set to work finding out all the things a person was to do in order to fall into the category of "good parent." The baby was well fed, bathed, clothed, loved, taken to church, allowed to be spoiled by anyone who was up to the task, and many other things too numerous to mention.

Among all the things we had been told needed to be done for a child, one of those things was the need to have her vaccinated according to the Center for Disease Control's standards. So, being the good parents we were, we took our tiny baby to every appointment, so as to be sure she grew up free of childhood diseases that had killed many children in days past.

At every visit, she was subjected to multiple injections of large doses of medicine. And in a very few short weeks, we would return for a "booster" of the same injections. They told us that, in order for it to be effective, you would need the same shot several times. Each time we went, I would hold this sweet baby still, while a nurse who did not know nor did she care to know who we were would quickly and painfully jab this needle into her chunky little leg. But hey, I was being a good parent.

Then my second child came along. My son was sick nearly from the time he was born. It seemed that every time "shot time" came around, he was running fever or had a sickness of some kind. Since you are not advised to give vaccines when sick, he was only able to receive the first two sets of shots. We were never able to take him for the others. So, of course, my daughter was not going for her's at that time, either. I began to question whether or not I was a good parent, since I hadn't done what I was "supposed to do" to keep them healthy. But since there was no way around it because of my son's continued sicknesses, there was just nothing I could do.

During this time, my husband and I began to question the vaccines, how many were given at each appointment, why they needed them, and what exactly were they putting in our small children's bodies. We began researching online, and what we found was simply astounding.

There are simply too many side-effects to list them all. So I will only list a few of the many complications. They are brain damage, severe neurological damage, allergies and hypersensitivities, general damage to the immune system, auto-immune diseases, stealth viruses, and even cancer.

Let me tell you of the one that is very close to my family. It has been proven that immunizations can lead to a deterioration in existing auto-immune disease. What that means to me is this. If you are already carrying a gene for auto-immune disease, vaccinations can trigger this gene into "waking up." Once triggered, auto-immune disease presents itself in many forms - Type 1 Diabetes, Hashimoto's Thyroiditis, auto-immune atrophic gastritis, multiple sclerosis, auto-immune hemolytic anemia, and many other illnesses.

You many know that my son has Type 1 Diabetes. There is no way for me to ever absolutely say what triggered his auto-immune disease into "waking up" and killing his pancreas function. But I do know that this is one of the side-effects of these so-called "life saving" vaccines. Do they really save life, or do they cause more illnesses?

And then there is the long list of all the things they use to make these vaccines. Again, the list is simply too long to include everything. But some of the things that stick out to me are these: many heavy metals (which are very harmful to your body), formaldehyde, thimerosal, calf skin, chick kidney cells, chicken embryo, monkey kidney tissue culture, mouse brain culture, and, my favorite, aborted fetal tissue. Are these things that I really want to inject in my body or the small bodies of my children?!

So the question for you is this. After researching for yourself, are you willing to be part of the herd that gets run through the vaccination line every so many weeks in order to be a "good parent"? Or are your children important enough for you to stop and think about what you are doing to them that they will have to live with for the rest of their lives?

http://www.cdc.gov/vaccines/pubs/pinkbook/downloads/appendices/B/excipient-table-1.pdf

http://www.whale.to/a/quak.html

http://www.southbaytotalhealth.com/Vaccinations.htm

Confessions from a Banker

Cord blood banking is a relatively new concept in health care. The short version of the science behind it is this. When a baby is born, the doctor pulls the blood from the umbilical cord, stores it in vials, and ships it off to be cryogenically frozen for an indefinite amount of time, until the recipient determines it is needed and uses it for a medical necessity. This is a very costly process - several hundred dollars up front, and then the yearly storage fee of $95.00. But scientists claim that they are making great progress in the use of cord blood as an alternative to treat many different diseases.

That brings me to my story. Eight and a half years ago, my mother-in-law called me on the phone to ask if I would consider having my son's cord blood saved for my brother-in-law, who was, at the time, battling non-Hodgkin's lymphoma cancer. This had been a long battle for him, and doctors were beginning to talk of the use of cord blood as a cure for this incurable disease. So she called, and she told me that if we would be willing to do this, she and my father-in-law would foot the entire bill - initial cost and yearly cost for however long it took thereafter. Why not?! This wasn't going to cost me anything, it was on my doctor to actually pull the blood, and who knew, but that I may actually be helping my brother-in-law in some way. It was a win-win situation. So we agreed, and the cord blood was saved.

It sat in storage for 6 years. Finally, it came down to a question of whether or not this cord blood that had been banked just for my brother-in-law would, in fact, ever be able to help him. He was nearing the end of his options. After discussing it with his doctor, they opted to forget about the cord blood and go straight for a bone marrow transplant. There was no time to lose with him, because his cancer had progressed too far. In their minds, the cord blood was still too experimental, and he just couldn't afford to "experiment" with the time he had left. And so, he went to Dallas, TX, had a bone marrow transplant, and about a month later, died of organ failure.

About 6 months later, when things had calmed down a bit, we began to evaluate whether or not it was worth keeping this cord blood that we had been banking for these many years. Would it ever go bad? Was there a time limit in which it needed to be used? We decided to call Cord Blood Registry, the bank in which we had used, and ask them. The customer service rep told me that, as long as it was cryogenically stored, it could remain in storage indefinitely. Hmmm...

I began to explain to him how we had come to save this in the first place, and that we were trying to decide whether to keep it. My son, after all, is a Type 1 diabetic, and I had heard that they were trying to find a way to use cord blood in the treatment and curing of this disease. Before I could even finish my thoughts, he interrupted me and said, "Oh yes, I know exactly what you're talking about. There is a doctor in Florida who is doing a clinical trial right now using cord blood on Type 1 diabetics." WOW! This was more than I ever expected to get from this phone call!

Immediately, I got on the phone to Florida and spoke with this doctor. He told me that, yes, he was doing clinical trials, but that the enrollment period had just ended. But he did tell me that he'd let me know when enrollment would open up again for his next trial. So, I filed all this information away in the back of my mind, and really figured that was the end of it.

But a few months ago, Dr. Haller e-mailed me to ask if I was still interested - enrollment was now open for his next trial. Yes! Oh my goodness, YES!! Finally, maybe we could put this cord blood to use and help our son. We jumped through all the hoops to see if we would even qualify for this trial, and unfortunately, my son was not a candidate. Boy was I let down!

After much prayer and thinking, I realized that this does not mean the end. Looking back, I can see the hand of God all over this boys life! This is a child that was a complete surprise to us. His cord blood was saved for someone who never had a chance to use it. This boy is the only child out of my 4 children who has an illness - my other 3 children rarely ever have even the sniffles. The list goes on and on. There are just too many things that are absolute evidence of God's plan in this child's life. We just haven't been privileged to see the end to that plan. So we wait. And we will continue to pay every year to keep this cord blood banked, so that, when God sees fit to use this somehow, we will be ready.

So in the end, if you are expecting a baby or even thinking of having one, cord blood banking is certainly something to consider when thinking and planning all your details. I can't tell you that you should or shouldn't pay this small fortune to save cord blood that may or may not ever be used. But I can tell you, if one day you are faced with a child who has a major illness or accident and are in need of that child's cord blood for healing and recovery, you will be glad you banked!

http://www.cordblood.com/

My Little Man

Doesn't time fly?! Eight years ago, my little man was born. Today, we will have a party for him to celebrate. Where has the time gone?

He started out like most any other baby - tiny, sweet, cried, slept, ate. But very soon, we realized this baby was different. When my little man was 3 weeks old, he got very sick with an upper respiratory infection. He just could not breathe from his nose or his lungs. From there, he went on to have one ear infection after another, strep phenomena, digestive problems, tonsillitis about 7 times in about 7 months - the list goes on and on and on. It was not uncommon at all for my little man to have 105 fever. I finally quit taking him to be checked when they kept telling me,"Besides the fever,we can't find a thing wrong with him." So I would sit up, night after night, and hold this sweet baby, who was burning up with fever, and try my best to comfort him.

Finally, when he was 5, we made the decision to have his tonsils taken out. That was a hard one for us, since we really didn't want to take out body parts on this kid. But they were so infected that antibiotics just would not get them well. As soon as his medicine would run out, the tonsils would swell up again. So we did it. They came out. And we hoped this would be the end of the sicknesses. After all, everyone told us that once they did it for their kids, they weren't sick anymore. So we breathed a sigh of relief, because maybe we were done.

But things didn't get better. We still fought with constant high fevers and lots of digestive problems! We didn't know what to do, but finally just decided that this was a normal thing for this child. We just dealt with each issue as it came, and tried to go on with life as usual - stayed home when he was sick, did as much as possible when he was well.

Then Christmas of 2007 came. Like most families at this time of the year, we spent a lot of time with grandparents and other people we don't often get to see at other times of the year. Everyone, of course, commented on how the kids have grown. It had been such a time since they had seen them. But two people that Christmas made note of something that, being with him day in and day out, I had not noticed. They both told me how they were worried about the amount of liquids he was drinking. My thought - "Who cares! Water is good for you!" But both of these people told me this was a sign of diabetes. "That's ridiculous," I thought to myself. However, I am a known hypochondriac, so I told my husband that I thought I might take him in after the first of the year just to be checked. Our doctor was not open on January 1 or 2, so I did not plan to go until the 3rd. It just so happened that, on the 2nd, my little man was very sick with a very high fever - again. So I thought to myself, "Well, I guess it's a good thing I am going tomorrow anyway."

We went the next morning. They checked his blood. We went in the room to wait. Our doctor came in and asked me what was going on, not being his normal chipper doctor self. I explained to him my concern. When I finished, he looked at me seriously and said, "Yeah, he does have diabetes." I just sat there for a moment letting that sink in, because that wasn't exactly what had played out in my mind that he would say.

And so we began yet another journey with this sweet little man - first to the hospital, then to a nutritionist, then to a new doctor in Shreveport, and finally, we settled into a routine of day in and day out Type 1 diabetes management. That includes pricking your finger multiple times throughout the day, and also 5-7 shots of insulin each day. It hasn't been fun, but he has been so great about the whole situation.

About 2 months ago, we made a decision to purchase an insulin pump, hoping that we could even better manage his diabetes. It has proven to be a good choice. He now gets 1 shot every 3 days, and his blood sugars are much closer to normal.

And guess what else! When we finally got to the root of the problem, this child has hardly been sick again. We have lived with Type 1 diabetes for a year and a half now, and he has had a head cold once in that time. It amazes me how many things were all linked to diabetes, and once we got that part right, everything else worked itself out. No more high fevers, no more digestive complaints, energy levels through the roof! He's a new kid!

My little man has come such a long way in these 8 years of life. We have been through great times and bad times, fun times and "scare the life out of you" times. As I sit back and reflect, I am amazed at this child and God's mighty hand on his life. Where has the time gone? Though he is growing up and I know the time will continue to fly, he is still and always will be "my little man".