Our Experience . . . (continued 6)

As I indicated in my previous posts, my son’s learning experiences in elementary school had lots of room for improvement, and in some cases did more harm than good.  It was our hope that sixth grade would be a better experience which would result in some actual education.  My son no longer had to deal with a social working turned teacher who, from his perspective, bullied and tortured him about his Tourette Syndrome.

A few days before the first day of school my son became really sick.  Throwing up.  Thirsty.  Drinking mass amounts of liquids.  It got to the point I couldn’t stop the throwing up.  I assumed he had a really bad flu.  He needed medical help, so I took him to the emergency room at the local hospital.  Initially the doctor thought it was a flu or a virus and they put him on an IV to pump in fluids and an antibiotic.  They knew my son had epilepsy and was on the drug depakote.  They took blood to evaluate whether his blood levels were okay as it relates to this drug, and then also do some basic testing.

The doctor came back and indicated that they had found something unexpected.  One of the tests they took was an A1C which is a test that measures the glucose levels in a person’s blood.  My son had diabetes.  I was absolutely shocked.  My son already had so many things going on with his health.  It never occurred to me that he would have one more challenge to face.  Looking back there were many different signs.  He had lost lots of weight in a three-month period.  At that point the doctor said we needed to transfer my son to Children’s Hospital.  They would have better experts there to help my son.

My son was in the hospital for several days.  It took awhile for them to get all of levels closer to normal.  When a person has diabetes, particularly type 1 diabetes, and their glucose levels our out of control, the body goes through many chemical changes.  The sodium and calcium levels become off.  My son’s body could not deal with the glucose, so his body was basically eating away at itself.  While at the hospital we went through a lot of education classes.  What type 1 diabetes is, how to manage it, and how to deal with day-to-day life.

As a result of this, my son missed a week and a half of the first days of school.  When he returned to school on his first day of sixth grade there was one big surprise.  In his special education class he was sitting near a girl who was his best friend since kindergarten, but had been separated for a few years when she moved to a new elementary school.  He was so happy.  Sixth grade seemed to be going well.  My son enjoyed his Special Education teacher.  She seemed to understand what was going on with him.  She had arranged for a quiet place for him adjacent to the classroom where he could go if his tics became really severe.  Physical Education initially caused some anxiety which increased his tics.  She slowly helped him get over his stress and he was able to participate.  His other classes were pretty much uneventful.  It was a surprise to me how well he transitioned to this new school.  In addition, he was able to manage his diabetes pretty well at school.

The first hint that I had that something wasn’t quite right was when we had our first IEP meeting.  Most of the IEP goals were directed at accommodations that were needed for state testing.  The only other discussion was in regard to how to handle my son’s medical issues.  There were also some goals for reading, language, and math.  The meeting was very rushed and, like the previous school, was held before school started which now I realize was a tactic to limit the length of the meeting because teachers had to leave to attend to their classes.

The other odd thing that happened was when it came to Parents Teachers Conference.  His teacher said there was no need setting up a conference since we had just met on his IEP.  I responded ok, but later thought to myself she was not the only teacher my son had.  He had classes outside of Special Education, but in this conversation they were ignored.  Today, I regret agreeing because became the beginning of the end of this school for my son.

As school entered its last trimester, the school started to complain about my son’s absences.  Keep in mind he had missed eight days at the beginning of the year due to his hospitalization and onset of diabetes.  In addition when my son’s tics got really bad, especially at night when they went on for several hours with no relief, he would also miss some school.  Add to that his doctor appointments and days missed for general illnesses such as the flu.  I was a little irritated by their attitude, especially when his teacher said she had no problem catching up my son when he missed a day.

Little did I know that this was the beginning of the end and would bring us to some major decisions about my son’s education.

To be continued . . .

Our Experience . . . (continued 5)

Fifth grade for my son was uneventful.  He loved his mainstream teacher.  For his special ed. classes (reading, language and math) he was stuck with the social worker serving as the special education teacher.  Serving is probably not an accurate description of her activity.  She was a thorn in my son’s and my side.  She did not understand Tourette Syndrome or Non-Epileptic Seizures.  My son had no privacy when these events went on, which could go on as short as a minute or as a long as forty minutes.  She expected him to continue working while his body was having these spasms of  tics and loud, yelling vocalizations.  She kept telling him he was fine, and to him, he did not feel fine. 

Something to note, since my son was put in Special Education I saw no evidence of school work.  No completed assignments, no home work (which was specified in his IEP), no comments in his assignment book, no nothing.  The only way I knew what was going on was by what my son would tell me.  In our teacher conference that happened once a year, they would flash a couple of papers in front of my face and tell me everything is going fine.  In those days I was not smart enough to ask for a definition of fine.  I made an assumption that they were doing what was best for my son.  They were supposed to be the experts. Big mistake that was.

What I did know is she was still teaching him math facts using the timed tests, which in turn created more episodes of tics and/or non-epileptic seizures.  I had given up trying to make the school stop.  Each day my son would come home and tell me how this teacher was treating him.  She was consistently punishing him for having these tics.  He was left out of any reward systems which was available for the rest of her students.  I kept telling my son to please hang in there.  This was the last year he would be in this school because he would be moving on to Middle School.  At that time he would not have to ever see this teacher again.

Toward the end of fifth grade the Middle School met with me to ensure my son’s transition went well.  The meeting included the principal, the special education teacher, the nurse, and the psychologist.  Based on the meeting they appeared to have their act together.  We talked about the various types of support my son would need.  They appeared to be very diligent in addressing these needs.  It was obvious to me that this school operated completely different than my son’s elementary school.

One of the best things that the Middle School provided is an orientation week before school started so that the students could get their bearing in the big middle school.  This school was the biggest middle school in our state and was quite overwhelming for students at first. 

In this orientation week they ensured that the student knew where their locker was and how to open it. The showed them where their home room was, which was the room they went to first thing in the morning and last thing in the day.  They were showed where the special education room was and explained what time of the day they would be coming there.  They showed  where their house was located (the grade was divided into houses, very much like Harry Potter) and the house location served as the hub for most of their standard classes such as English, Math, Social Studies, etc.  They also showed where art classes and physical education classes occurred.  For physical education they explained what to expect as it relates to another locker, clothing, showering, etc.  And finally they explained the bus routine.  This was a new thing for my son because he had not ridden the bus up to this point.  All in all I think this was a wonderful program.  The school brought together the population of four elementary schools into one seventh grade class at the middle school.

Parents were also invited to an orientation which was basically a demonstration of the rules, preparing the parents for middle school.  Believe it or not, I wasn’t anxious about this transitional year until I went to this meeting.  One of the big topics was school absences, which I was really concerned about.  I talked to the Vice Principal after the meeting about this topic and explained that my son would be using up his absences in no time, just for the purpose of going to doctor appointments.  At this point my son was seeing a neuropsychologist every three weeks.  He also saw his neurologist every three months.  The Vice Principal told me to not worry about it.  The absences were understandable.  Later, I learned the absences were a bigger deal that what the Vice Principal led on.

So we were set to start sixth grade.  I use the work “we” because the transition was not only for my son, but also for me.  It was like starting all over again with new people.  I explained to my son that this was an opportunity for us to start out new and not be impacted by personal prejudices that some of his previous teachers had shown.  He was looking forward to the year and was glad he was out of elementary school.

To be continued . . .

Greed and Diabetes

Yesterday I read a really interesting story about diabetes and insulin. The article Miracle on Bloor Street was commemorating the current day because it marked the 90th anniversary for the first day that insulin was used to treat a human with diabetes. On Jan. 11, 1922 a 14 year old boy named Leonard took insulin and after some adjustments to the medication it was successful in a couple of weeks after the 11th.   Prior to this diabetes was a death sentence and was managed by limiting the diet. I mean really, really limiting the diet to about 400 calories a day.  The average life expectancy was 11 months.  An example of this diet is the Allen Starvation Diet.

This story was very uplifting, but something at the end of the article caught my attention.  It said:

Insulin cost $1,400 to discover at the University of Toronto Medical School in 1922 and through the extraordinary efforts of the Eli Lilly and Company, became available to people around the world just two years later. Insulin is today the most widely prescribed drug in medical science.

The reason I bring this topic up is that pharmaceutical companies claim that drugs are expensive because they have to make up for the research costs. If the creation of insulin cost only $1,400 in research funds, then why in the hell is my son’s insulin $135 a bottle?

The same is true about blood glucose testing strips. I believe my son’s strips cost about $35 for 50, which last about a week. The price for 50 strips can range from $20 to $75.  Meanwhile the whole world is panicking because diabetes is and epidemic. An epidemic means increased sales of the strips.  The testing strips have been in use since the 1970s. Do you think the pharmaceutical companies have pad off their research costs by now?

This topic got me to thinking. What about over the counter drugs? Tylenol and Advil cost about $5 to $10, depending on the kind. These two drugs are probably the most used drugs in the world. If there is such huge demand the cost should be minimal.

Now I do understand that some drugs have to be more costly, especially if the population using them is small, or at least smaller, but this isn’t true for diabetes  I think at one point my son was taking a epilepsy medication which was over $500 for a month supply.  I also realize that there are production costs, and new types of insulin are being created.  Even still the insulin costs don’t seem to be right, and I smell a rat somewhere. Oh no! That’s not a rat. That’s greed! Greed at whose cost?  Maybe I am missing something hear.  I truly appreciate the research that is being done to improve conditions for a person with diabetes, but I thought all of commerce was driven by supply and demand.

This whole situation is about as ridiculous as how gas prices fluctuate. If there is some crisis in some oil producing country, the price for barrels of oil go up. In fact they go up for all oil companies. Then in synchronized management the very next day the gas prices go up at every single gas station. The gas that is being sold on that day is not from the oil with the increased price. Also, practically every year right before winter there is always a news story that due to shortages the cost for heating is going to go up.  Also, watch the prices of gas preceding a holiday. Hm-mm, what this comes down to s GREED!

I am really sick of getting screwed over by big corporations. Do they really think we are that stupid. No, these big corporations count on the fact that Americans are very complacent, caught up in their own daily lives. The whole world could be falling apart (which seems to be happening more and more these day4) and I wonder how long it would take America to wake up, take notice, and more importantly actually take action.

I apologize for this tirade, but I had to get this off my chest, and perhaps wake up more people about the greed of these corporations.  I say fight the greed.

A rough year, doing what you have to do

I am so glad that 2011 is coming to an end. It wasn’t a very pleasant year for my family. My son and I have been on our own for about three years while my husband has been in another country trying to create some financial stability for our family. A failed business, my son’s medical bills, our own health, and ailing parents have really set us back financially. In three years we have seen my husband for only two months. It is not easy dealing with life’s challenges without your husband or your father. This has been really hard for my son. He doesn’t understand that his father is sacrificing too. He doesn’t understand why his father had to go to another country.  He doesn’t that his father does not have access to the same opportunities here in America.

This year was a personal challenge for myself due to some health issues that creeped up on me. A year ago I was diagnosed with type 2 diabetes. And then for about a year I started to have some unusual symptoms including dizziness and loss of memory. The loss of memory was getting pretty serious. My success in my career was mainly due to my memory and the creativity of the mind. Finally after going through some tests it was determined that I had hypothyroidism. Since starting the medication things have improved but not totally back to normal.

Who knows, perhaps I am back to normal. Perhaps this is just my stage in life. I am over 50 years old, going through menopause, have diabetes, am over weight, suffer from both anxiety and depression, and have a thyroid that isn’t working. Perhaps this is the new normal.

One of the other big challenges we have been dealing with is my son’s type 1 diabetes. He was diagnosed a year and a half ago. A year ago he went on an insulin pump. Yet his blood glucose is still out of control. He is 13 years old and does not understand the seriousness of diabetes. I fight to get him to test his blood. I fight to get him to take his insulin. He is angry about the whole situation and I haven’t figured out a way to get this turned around. And now to top it all off I don’t know how I can keep paying for his diabetes supplies. We are struggling. We aren’t even able to live from paycheck to paycheck.

As some of you may know my son has several chronic health issues besides the diabetes. He also has epilepsy, non-epileptic seizures, Tourette Syndrome, an anxiety disorder, a little OCD, sensory processing issues, high functioning autism, and a little ADHD. That’s a lot to deal with. It all seems to be related. As you know many of these conditions overlap each other. The diagnosis is difficult, and the treatment is nearly impossible. Thus, this is where all of the medical bills come from.

Besides the diabetes, the other thing that was really beating us up was his Tourette Syndrome. He was having hours and hours of these violent physical tics and loud vocal tics. They were exhausting. Nothing seemed to help. We tried everything including medication, therapy, self-hypnosis and bio feedback. Nothing really worked. For most of this to work you have to really understand your tics and try methods to prevent them from happening. Unfortunately my son hasn’t quite figured that out.

Between all of the doctor appointments and nights with no sleep due to theses tics I was missing quite a bit of work and my son missed quite a bit of school. Lucky for me at work I had intermittent medical family leave time and was able to make up my time by working remotely. Usually my manager understood and then sometimes he didn’t. On the other hand my son’s school did not understand. They didn’t understand why he couldn’t attend school when he spent five hours or more in the night having full body jerks and vocal yells. They didn’t understand he needed to go to medical appointments. They didn’t understand that on top of his medical problems he is going to get normal illnesses such as the flu or a sore throat, or a cold, or a stomach ache. It got to the point they wanted a doctor’s note for every day he was having problems. Damm, I couldn’t afford to take him to the doctor every time he was sick or every time he had a bout of tics at night! They didn’t understand that there were no answers. The doctors had no cure. We have seen the best doctors in the country. On top of all this they didn’t understand that we needed to develop a plan that would educate my son with the restriction he has in life and teach him when he is able to learn.

So, this fall I took some time to evaluate the situation as it relates to my son’s education. As you may already know my son has some learning disabilities. He has been on an IEP since first grade. But in the last four years he has made no progress in math and very little progress in reading. He didn’t have the right accommodations in place, even though I would make suggestions, and I don’t think they were teaching him in his learning style. I don’t think they even knew what his learning style was. In fact I don’t think they cared if he was learning. I knew if I let things continue, my son would be graduating from high school and not be able to read.

I then realized I could do a much better job than the school. I was educated. I have a master’s degree. I know my son is quite smart and I just needed to take control and provide him with the education he deserves. So we made the decision to home school. And yes it isn’t easy. I work full-time. The key to it is to be very organized and planning ahead. I have my lesson plan for the whole year, with detailed daily plans that are a month ahead of us. My son follows a schedule while I am at work, and then in the evening we have class together. I am following a flipped classroom approach, where the detailed project work we do together. I take full advantage of information and applications that are available on the internet and educational television programs. I am taking a very practical approach to his education to ensure he learns what he needs to survive in life and to be a contributing citizen to his community. It is not easy, but we have already made tremendous progress since we started in October.

On top of all of this we have had a few more bumps in the road. Last summer we were rear-ended in our car. We both had whiplash and my son had a concussion. The car was totaled. Great, we have no money and I wondered how in the hell was I going to get a car. If I didn’t have a car there would be  no job. I commute about 35 miles away.  Between cashing in my 401K, which wasn’t much because I had already used most of it for all of the other emergencies, the insurance check, which wasn’t much because my car had 275,000 miles on it, and my gracious mother I was able to get a car. This was one less pressure off my mind.  THANK YOU MOM.

This year I have also been facing parents who are getting older and their health is becoming more and more challenging. My father was seriously sick for six months. He has been seeing many different specialist, all of them unsure of the diagnosis and each of them coming up with something different.  Most recently he saw a heart specialist and they have determined he has a blockage.  They will be dong surgery in the near future.  Most recently my mom is having a possible cancer scare. We will know more in the next month. She is a tough lady. She has survived breast cancer and uterine cancer.  The doctors are going to do a biopsy.  Hopefully it isn’t cancer.  We will see.

This year we also lost someone very dear to us. My husband’s brother died from cancer. He was in a country where he didn’t have access to medical treatment for cancer. He died within 9 months of being diagnosed. The end was bad. My husband was literally donating his blood daily to try to keep him alive. His wife went from hospital to hospital to try to buy blood. Medical care in third world countries is limited.  It was a terrible situation. But now he is at peace. We miss him dearly. He was kind and generous. More importantly he was greatly loved.

So we are almost to the end of 2011. The holidays are here, even though I don’t feel like being in the holiday spirit. I think to myself, let it be over. What could be worse than this year? I spoke too soon. My company informed me last week that my position was being discontinued and I was being laid off. What! Not now. My first thoughts were, I have to keep my son’s health insurance. I cried. Talk about sucker punching you when you are down.

I am telling you all of this because I have had a bad year and needed to get it off my chest. I am also telling you this because I am an example of one of those Americans that is struggling.  Looking back, my life has never been easy. BUT, I am also a survivor. I will get another job. I will take care of my son. Life will go on. I may not have my own home. My apartment may not be all decorated. I may not have a lot of clothes. I may not go on vacations. I may not be able to eat at restaurants. Sometimes I may not feel the best. I might even feel sorry for myself. But I am alive. I have a family that I love. And what else would I do. Give up? What would happen to my son if I did that? I have to be here for him. I have to make it. Sometimes you just have to do what you have to do, and that it is how it is with me. Doing what I have to do.

Here to 2012! It is going to be a great year.

Travel Tips for Insulin Pump Users

by John Ngijseh
Just because you have diabetes does not mean you cannot go on holiday. All you have to do is to make sure you prepare well.

Key tips:

1) Always have some type of diabetes ID on you so that people know that you are diabetic. An identification bracelet or an ID card would be ideal.

2) Take a blood glucose meter with you. You may be ill on holiday, dehydrated due to the heat or may eat food that you would not usually eat. For all these reasons it is important to be aware of your blood glucose levels and make sure they are controlled. If you don’t have a blood glucose meter and would like to know more visit our guide to glucose meters

3) Make sure you have a written certificate from your doctor in the language (if possible) of the country you are visiting stating that your medication or insulin is for the treatment of your diabetes. The last thing you want in a foreign country is any misunderstanding regarding medication and needles.

4) Make sure you know where you can go for medical help in the place you are visiting preferably beforehand but if not on your arrival.

5) Take a recent copy of your prescription with you. No one wants to lose their medication but these things can happen. Having the name of your medicines and proof of a prescription can help you find replacements.

6) Take more medication and test strips than you would normally use. Just in case some are damaged or lost. Take as much as twice the insulin you actually need for your trip. To purchase more test strips for your meter visit  test strips .

7) If you use an insulin pen, take a U100 insulin injection with you for emergencies and remember to dispose of your needles with great care. Ideally use a BD Safe Clip Needle Cutter to cut the needle off your syringe, this is also handy as it is small and portable.

8) Check with your insurance company that your diabetes is covered.

9) Make sure that your medication or insulin does not become too hot or cold. There are special cool bags that can keep insulin cold during travel. Also, it is best to keep insulin in your hand luggage, as it is likely to freeze in the hold of the plane. Frio Bags are available here at Pump Wear  Frio Products

10) Always carry a snack or hypo treatments in case of hypoglycaemia or if a meal is delayed or contains to little carbohydrates.

By taking the above simple steps you can have a great holiday.

Have a good time.

John Ngijseh
Glucosemeters4u.com

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