Camp OZ – A Great Place for Children with Epilepsy . . .

Living with epilepsy does have its challenges. With the help of the Epilepsy Foundation a child can get an opportunity to go to summer camp. My son has went to Camp Oz for three years. Camp Oz is supported by the Epilepsy Foundation of Minnesota. If this camp was not available, my son would not be able to attend a summer camp. Camp Oz has health care experts available for the whole week of camp. The experts include neurologist, nursing staff, psychologists and others. The great thing is they are prepared for a child having a seizure and have the experience. In addition they have the expertise of ensuring your child has taken his medication. The folks with Camp Oz have really done a great job supporting my son while he is at camp.

• It is Camp Oz where my son learned how to shoot a bow and arrow.
• It is Camp Oz where he rode a horse.
• It is Camp Oz where he got to kayak.
• It is Camp Oz where he could meet other kids with epilepsy, and have fun.
• It is Camp Oz that provided a safe environment where I didn’t have to worry about my son or his medical condition.

I really can’t thank them enough for helping us. I highly recommend this camp. Plus no camper will be turned away based on their inability to pay the camp fee. Talk to Nikki Baker, the Camp Director.  She is a great person and through Camp Oz has become a friend to my family.  Please read below for more information:

Camp Oz – Epilepsy Foundation – Minnesota Organization: Epilepsy Foundation Contact: Nikki Baker, Camp Director, Address 1: Camp Oz Offices Address 2: 2356 University Avenue W., Suite 405 City: St. Paul State: Minnesota Zip Code: 55114 Phone 1: (800) 779-0777, Ext. 2310 Phone 2: (651) 287-2310 Email:nbaker@efmn.org URL:http://www.efm.nonprofitoffice.com

Staff Training and Certification Staff Training:

Our health service staff includes registered nurses (on site 24 hours a day) psychologists, a neurologist and pharmacists (on site daylight hours, available for consultation 24 hours). All are experienced in caring for children and teens with epilepsy. Participants Served Program is specific to people with disabilities.

Age range of participants (8 to 17)

Membership Fees There is a fee to participate in the program. Sliding/Adjusted Fee Scales: Scholarships are available. No camper will be turned away based on their inability to pay the camp fee.

Notes Camp Oz is a one-week camping program for children and teens, ages 8-17, who have epilepsy. It combines a traditional camp experience with the security of a specially trained medical and behavioral staff. Summer camp offers participants a chance to spend time away from home, experience a variety of recreational activities, and make new friends. Children and teens with seizure disorders may not always think about going to summer camp because of their medical needs, but Camp Oz addresses those concerns while remaining full of fun.

The Camp’s 152 wooded acres include a waterfront, rustic cabins, a lodge for program activities, dining hall, centrally located shower and toilet facilities, chapel, health service, arts and crafts building, athletic field, and a small game area. Campers enjoy a unique summertime experience, gain a better understanding of epilepsy, learn more about their medications, and meet others who know what it’s like to live with seizures. Camp is usually held during the middle of June. A special outdoor program encourages children to participate in a variety of activities:

•Swimming and Fishing
•Canoeing and Sailing
•Overnights and Cookouts
•Skits and Organized Games
•Evening Campfires and Singing
•High Ropes Course and Group Initiatives

For more information, please visit: http://www.efm.nonprofitoffice.com

A special thanks to:  Nikki Baker, Dr. Frost, Carol, Scott, Julia Doss, and everyone else that help make Camp Oz a wonderful experience.  J.O.  says thank you too!

 

 

My family and possibly the beginning of the decline of the Ford automotive business

Recently my father told me a story about why our family has never bought Ford trucks or cars. My grandfather didn’t. My father didn’t. And I haven’t. This little story shows how one event can completely change consumers for generations.

Shortly after World War II, my grandfather ordered a car from a dealership. During WWII manufacturing had shifted to manufacturing for the war effort. After the war, car manufacturing began again, but it took about six months to receive a car after it was ordered.

The car my grandfather ordered was a 1950 Ford Coupe. He had been waiting for it for about seven months.  The community that he lived in was small and he heard that some cars had come into the dealership. When he went to pick it up and pay cash for it, the dealership informed him they did not have a car for him. My grandfather presented them with his copy of the invoice, which included the specifics about the car, along with the estimated shipping date.  The salesman at the dealership denied that they had gotten any cars.  The whole situation was suspicious because he had proof that new cars had come in.

My grandfather then talked to the owner of the dealership.  The owner finally admitted that they got in my grandfather’s car, but he had sold it to a local business man.  His reason for doing so was simply that the business man did not want to wait six month.

My grandfather was angry and walked out of the dealership with his cash in hand. He did not get the car and he refused to buy a Ford for the rest of his life, which was another 26 years. Buying this car was quite a big deal. He was a farmer and a car would be a luxury item. It would have been more practical to buy a tractor or farm equipment.  In the end Ford missed out on the sale of another four or five vehicles to my grandfather as a result of this reneging of a sales agreement.

In addition my grandfather had ten children, seven boys and three girls. Guess what! Those ten kids grew up and didn’t buy any Ford cars neither. If one person buys 8 – 10 cars in a lifetime, with ten people it adds up to 80 to 100 vehicles.  Now those ten aunts and uncles of mine had children which was about 28 of my cousins. None of the cousins, including myself, have been buying Fords.  Ford missed out on another 300 to 400 sales or more.

Now we come to me. I did not know this story until recently. I also have not had a specific reason why I never bought a For vehicle.  But I did know that my father did not like Fords.  He had expressed many times as I grew up.  My father is no dummy.  I suspected he had a specific reason, but I had never bothered to ask him why.  I just assumed it was in reference to having poor performance.  So, I have stuck with the family tradition of not buying any Fords throughout my car buying experiences. So far I have bought seven cars. Not one of them has been a Ford. In fact I don’t even look at them in the dealership lots. I suspect I will be buying another at least nine or ten more cars yet in my lifetime. And once again, Ford has missed out on this business.

Now the big question is, will my son buy a Ford when he is an adult, that is if Ford is still in business? Probably not, because he will hear the story and stick to this unusual family tradition.

Now I understand why it is important to keep their customers happy. Or perhaps 500 sold automobiles isn’t worth that much. 

I wonder what my grandfather would think about our tax dollars going to bail out Ford.  It is true they didn’t take the bailout money in 2010 and Ford was gloating in the glory of not needing the bailout money which implied they were doing well at running their company.  The truth is they didn’t have to take the bailout money because they had already received federal help.  In 2008 to assist the automotive manufacturers, the fed bought $45.1 billion in commercial paper from the credit arms of for automakers – Ford, BMW, Chrysler and Toyota – along with GMAC (the former General Motors credit arm). Of those, Ford sold the most, with $15.9 billion.  According to the Fed, the commercial paper loans have been paid in full, while some $2 billion remains outstanding on loans for bond investors.

Response Plan for Non-epileptic Events

My son has a number of health issues and sometimes it is difficult to tell what is going on.  His epilepsy gets confused with non-epileptic seizures and his tics.  The following is a response plan that a neuropsychologist wrote to assist the school with dealing with these events.

Take a look at the plan and tell me what you think.  I would really appreciate the feedback.  We are about to revisit this document in the near future.  Some of this document is irrelevant because it was written when it was difficult for my son to go to school and includes some steps to deal with that situation.  Today, my son is in school but there are constant interruptions due to the non-epileptic seizures.  In the last week I have had to rush to the school 3 days out of the last 7 days.

I will be honest with you I am not confortable with some aspects of this plan.  The topic of non-epileptic seizures is a very sensitive topic.  We have experienced school personnel interpreting these events as being purposeful by my son.  As a result of this type of accusation my son’s anxiety raised and then percipitating more movement events.  It was a vicious cylcle.  This year he started a new school and I was hoping we wouldn’t run into the same behavior on behalf of the school. 

I would appreciate you taking a moment to read this.  I need all of the help I can get.

The attending neurologist working with the patient has determined that he has episodes of non-epileptic events that may look very similar to seizures, but are not actually caused by abnormal brain activity. The patient will need to be evaluated to determine if these events are some form of movement disorder, Tourette’s disorder, or if they are Non-epileptic seizures. These events are not epileptic in nature and therefore do not require the medical intervention that would be necessary if the patient were having an epileptic seizure. These episodes are not purposeful or intentional. Though they are not epileptic seizures, they still are a seizure. Depending upon the origin of these events (which again is still being investigated) they are likely exacerbated by stress or anxiety. In this situation the mind is causing the body to respond physically to these negative emotions, similar to people who have stomachaches or headaches when nervous or stressed. If patient’s events are determined to be tics associated with Tourette’s, anxiety can play a large role in how long these events last. Again, the patient does not have control over these movements, and they can be exacerbated by stressful situations.

It is essential that family members and school staff respond consistently to these events in order to minimize their impact on daily functioning. Regular visits to the school counselor are often helpful in providing additional support during school for social stress. It will be important for the patient to have designated times in which he can use relaxation techniques learned in therapy in order to reduce the number of events he is experiencing. If these events are determined to be non-epileptic seizures, it is possible that he could learn ways of preventing them altogether in therapy. It is important for him to practice his relaxation techniques throughout the day. This will require that he miss some class (usually in the guidance office), but it will eventually allow him to experience fewer events.

Description of the patient’s events: The patient’s events are characterized by burning in his eyes and jerking of his extremities. Sometimes the jerking movements appear as extreme thrashing, eratic movements. At times he hold his breath.

Again, he is still undergoing evaluation to determine exactly what these events are. What we do know is that they are not dangerous to him, and will not result in any long-term physical difficulties. It is important to help define them and get them under control, so that they do not further impact him emotionally. It has been noted that his events worsen when he is under stress or anxious. The patient’s events can last from a few minutes to hours. He often has difficulty focusing on anything else when he experiences the movements. However, distraction has helped to reduce the severity of the movements. Therefore, providing the patient with distraction during these events, and not focusing on the movement, could actually help them be less severe. While it is difficult to urge the patient to continue normal activity during events, this is actually the best way to help reduce or eliminate them altogether.

Whether these events represent tics, movement disorder, or non-epileptic seizures; helping to keep the patient in as regular a routine as possible is essential. If he does not maintain a routine this will only increase his anxiety, and can cause additional difficulties to develop. It may be necessary to alter his schedule to reflect the difficulty he is having at this time. His regular day may only allow for one hour at school and then home schooling for the rest of the day. During the time that he is at school it will be important to engage him in normal activities and to keep him there even if he has one of his events until the designated time that he will leave. This predictability will help the patient feel that he knows what to expect and hopefully help to reduce his anxiety.

The following section describes how to respond to the patent and to other students if the events happen while at school:

1. If you see that the patient is having an event or if he states that he is worried he may have one, talk to him briefly about how he is feeling.

2. It is alright to give him brief reassurance and to tell him what you are going to do in response to the event, such as: a. “You are having one of your events. It’s ok. You will be fine. Right now you need to have some time to calm down. I am going to stay close by but step away so that you can have some time to relax.”

OR

b. “You’re having an event, but you are ok and safe. I am going to turn off the TV, radio, etc. and give you some time to rest.”

c. After this brief reassurance in is best to stop interacting with him until the event has stopped.

d. If this occurs in class and does not last for an extended amount of time, it may be best just to watch him closely but continue on with class.

Once the event is over, it may be helpful for him to leave for a few minutes to calm or rest. Let him decide if he needs this.

3. Ensure that he is in a position where he will not get hurt. It is not recommended that he be moved very far during the event. If he is always sent out of the room, this will draw attention to his situation and may increase his stress and anxiety. Therefore, if he can stay in the room after the event, this is recommended.

4. If he falls, keep him away from sharp objects, do not place something in his mouth, he cannot swallow his tongue. This won’t likely happen because he does not tend to fall with his events.

5. It is best to avoid holding or restraining during an event.

6. If others are present in the room, if possible, they should be instructed to return to their normal activities without interacting with him until it is finished.

a. We encourage you to use language like “XXXX is having an event, but he is okay. Let’s let him be, I’ll take care of him while you return to your work.”

b. If the person is at home, all others should leave the room during an event except for the person who will monitor him for safety.

7. It is not appropriate to give Jamal medications, to send him home from school, to send him away from class, call the paramedics, give him a prize to stop, or allow him to avoid certain activities in response to an event.

After the event:

1. Note what happened just before the event started to happen. Is there anything that could have caused an increase in stress?

2. It is really important that “normal” activities typical for the patient be resumed as soon as is possible to reinstate normalcy and minimize disruption to his daily life. Neutral, calm responses to these events will help him to feel calm.

3. If he appears stressed, worried, or fearful, it may be necessary for him to have a brief period of time before he resumes the activities that he is involved in (i.e. maybe a ten minute break, but he should not need more than that).

4. He should not be removed from an activity or asked not to participate, because this will give him the signal that something is wrong, or that he cannot do something. He is still capable of engaging in normal daily activities, and this should be encouraged.

This plan was developed collaboratively by the patient’s medical/psychosocial team on the epilepsy unit of the XXXX Hospitals and Clinics of  XXXX

School and Non-Epileptic Seizures . . .

The last couple of weeks have been really crazy for my son and myself.  My son has a number of health issues including epilepsy, type 1 diabetes, tourette syndrome, and non-epileptic seizures.  Last week his school called me and reported that he was have a round of vocal and movement tics that was lasting hours.  Since it was not stopping I had to go pick him up.  He came home and slept.  His tics can be extremely physical and they wear him out. 

The next day the school calls again and reports that he had several clustered seizures.  They ended up calling 911 and he was taken to the hospital.  When I got to the hospital all was well.  The seizures had stopped.  The hospital did a blood work up and sent us on our way.  Once again my son came home and crashed.

By this time the school was getting anxious and were insisting that we consult with a doctor to see what can be done.  This is pretty frustrating.  There are no miracle pills that make seizures go away, epileptic or non-epileptic.  Likewise for tourette syndrome.  I could tell the school was uneasy with the whole situation.  So, I kept my son home on Friday so that I could watch him to see if the seizures occurred again.  They didn’t.  Meanwhile the school is breathing down my neck anxiously waiting to get notice of the miracle cure.  I watched my son over the weekend where he had numerous tic bouts, but no seizures.  It is then that I suspected what the school thought was seizures was actually either a tic or non-epileptic seizures.  Even so, I felt like I was being pressured by the school to do something to help my son, or maybe to make their job a little easier.  [Yes, that is vicious, but that is how I felt.  In the past the school nurse had suggested other medication such as medications for ADHD, and valium.]

On the following Monday I tried to get in to see the neurologist, which I knew would be impossible because he is usually booked months in advance.  I didn’t want to go to a different neurologist because my son has a pretty unique condition and I needed to stick with the neurologist that was most familiar with my son’s case.  Good neurologists are hard to come by.  It took me almost four years before I found this one.

Since I couldn’t get in to the neurologist, I tried to get into my son’s pediatrician.  My goal at this point was to discuss the tics and/or non-epileptics seizures, especially when the events went on and on.  Of course I couldn’t get in to see his regular pediatrician, so I took the next available doctor.  We went in and the pediatrician suggest that we try an anti-depressant.  We had tried this in the past with no positive results, but I thought maybe this time would be different.  My son is older, and we didn’t really adjust the dosage. 

I will be honest with you I was not comfortable putting him on the medication.  I have had some personal experience with anti-depressants and have experienced the positive change that they can make on your life.  Even so, I was hesitant because he was only 12 years old and what if this wasn’t really necessary.  There are dangers of being on anti-depressants.  Stories of kids attempting suicide kept running through my head.  Then again, my son’s quality of life was greatly affected by these movement disorders.

Coincidently, the following Monday we were going to see my son’s neuropsychologist.  We briefly talked about what was happening and that he was now on anti-depressant medication.  She said that the medication that was chosen is the best choice and is the only anti-depressant that has been researched for children.  That made me feel a little better.  Coincidently I ran into the our neurologist’s nurse and she said she could fit me son in to see the neurologist after the neuropsych appointment.  Wow, bingo! 

So we saw the neurologist.  We discussed what happened and he said that he didn’t want to change anything until we see a pattern or a reoccurrence.  They also were going to check his medication levels via a blood test.  There is a possibility these seizures happened because his levels were low and causing “break through” seizures.

For the next week my son had bouts of tics and/or non-epileptic seizures.  I saw no evidence of seizures.  Then today, the school calls and reported that my son was having seizures.  By this time I did not trust the school’s ability to distinguish between a seizure and either tics or non-epileptic seizures.  They requested my permission to call 911.  In the past it was my policy when in doubt go to emergency.  Meanwhile my son, who is no longer having events, says he doesn’t want to go to the hospital.  I talked to the nurse to get a better description of what was going on.  She said that it all started with tics and then became a cluster of short seizures.  She then described what was physically happening.  At that point I told her I was on my way and that she should not call 911.  I know this was a big risk, but no one knows my son and his health issues better than me.

I got to school and my son was asleep.  I talked with the school nurse and gave her permission to talk to either our neurologist or his nurse.  I asked her to describe what happened and they can give us guidance.  Meanwhile, I took my son home, and he went to sleep.  At this point I was pretty confident these were not seizures.  I knew I could not convince the school nurse that these were not seizures.  We had been home for about an hour and the neurologist’s nurse called.  Before she could even talk I said, I don’t think they are seizures.  She said that our doctor also agrees.  She tells me that she had a long talk with the school nurse and was hoping she had talked her off the ledge.  She also said our neurologist wanted my son off the anti-depressant medication.  I really trust the neurologist, more so than a pediatrician.  I am a little bit relieved that we can drop the anti-depressant medication.

At this point I dread taking my son to school tomorrow.  The concept of non-epileptic seizures is very confusing.  My concern at this point is that the school would swing to the other extreme.  I would have to face that issue when it happens. 

Come back after tomorrow and I will update you on what happened.  Keep your fingers crossed.

 

Email Pet Peeves

I love the opportunities that new technology has provided us over the past few years.  Some things in my life have become simpler, like electronic filing of our income tax.  It’s not that I like paying taxes, but due to e-filing I don’t have to fill out the lengthy forms with no guidance or I don’t have to pay someone else to do it for me. 

Technology has provided email as the means of communicating both within business and within your personal life.  I really do miss the old days of hand-writing a letter.  I can remember when I was young I had a pen pal from Korea.  Her name was Ok Hu and I loved getting letters from her.  She would write her letter in her native language and a translator rewrote it in English.  There was nothing more exciting than getting a letter from Korea. 

During the summers when I was young, a friend of mine from school would exchange letters throughout the summer.  To make it a little more fun we would either write the letters in morse code or write all of the words backwards. 

Today we have electronic letters known as email.  I was reading a post written by The Coach Manager called 5 Annoying Replies That Don’t Require “Reply All”  In this article he describes his dislike for the use of “reply all” because it is such a time waster.  In this post he lists five types of email that it is not necessary to “reply all.” They include: Congrats, Thank you,I agree, Please remove me from this mailing list and LOL.

I work at a large corporation and I also have a disdain for these types of emails, especially since we are allocated a limited amount of space for email.  I have a few more types of emails that I would like to add to this list:

Reply alls

You welcome:  Before you get the “you welcome” email, you already got a “thanks” email.  This type of email is a double hitter. I think it is wonderful to thank someone for something they have done, but it isn’t really necessary to copy everyone in the department.  What is the reason to copy everyone on a thank you email?  Are they trying to show that you are appreciative and implying that others are not?

Cover Your A$$ Email:  Working in corporate America this type of email is pretty common.  Everyone is always documenting everything because they don’t want to be held accountable.  The process is irritating – irritating that you have to do it, and irritating that others do it.  I really don’t have a solution for this.  Thinking about it, have you ever seen anyone fired for something they put in an email.  I haven’t, even though they should have.  But I have had to pull out an email to prove something that was said.  That is always fun.  I guess the reason I dislike this category is if you have to do it, don’t be so obvious.  Perhaps this category should be labeled “Obviously Covering Your A$$ Emails.”

Forgot to include:  This type of email relates somewhat to the “Cover Your A$$ Email.” To begin with the email has many names already copied on it.  The author then realizes a person of importance is not on the list and needs to be in audience of the information of the email.  So the author copies everyone again when they add the missing person.  Wouldn’t a simple forward work just as well?  My colleagues’ excuse for using this type of email is, “they don’t want to mess up the email chain,” as if this was the holy grail of emails. Now if the topic is that important, do you really think documenting it in email chains is sufficient?  I think it is another form of “Obviously Covering Your A$$ Email.”

Email’s of inspiration:  I am sure you have received these words of inspiration emails that have been sent to people from all over the world and the individual forwarding it keeps all of the email accounts in the forwarded email along with the inspiration.  When I get one of these emails I see all of the people who have received it and I don’t even bother reading the “inspiration” before I hit the delete button.  I know some people love these type of things.  Don’t you wonder what type of person takes the time to write them and then to start the spam process? It is even worse when they turn it into a “chain email,” where there is a threat of bad luck if you don’t forward it to ten more recipients.

Other email pet peeves:

Emails with attached large files:  This type of email falls into the same category of “reply alls” because it also eats up space on my computer or network.  I understand that it is important to share information and there are times that you have no choice but to attach a file.  All I ask is be considerate.  Check how big the file is.  If it is one of those monster files, think about another way of sharing the information.  Put it in a directory that is shared by everyone.  Put it in a document repository such as SharePoint.  Better yet, if you are in the same building as the recipient, invite them for a cup of coffee and deliver the document.  Also, if you are copying multiple people in the email, do they all need to have the attached document.  Probably not.

Spam:  Probably my biggest pet peeve about email is spam.  What more can I say?  Spam is hated by everyone.  Today spam has gotten pretty tricky.  They have become a mechanism of spreading viruses, placing a cookie on your computer, or providing the spammer with enough information to hack into your computer.  I wonder what does the spammer get out of spam.  Are there really that many people who fall for spam?  Spam is an industry all in itself.  Sometimes I wonder if the makers of software to corral spam are the same people who put out the spam itself.  If the spam is legit I will guarantee you that I am not interested in how to lose 10 pounds in five days.

Unsubscribes that don’t work:  I am always trying to eliminate unnecessary email that I receive.  There are times I am interested in a web site and in order to look at the information I am interested in, they may require a “subscription” to their site.  So I go along with it, subscribe, and read the info I needed.  Not a day passes and I start getting emails from this website.  I can’t complain too much because I did provide them with my email address.  So my theory is give them the information and then I will just unsubscribe to the page when I get the emails.  Well some of these companies are tricky, and the unsubscribe link in the email does not work.  I think this is even illegal, but who am I going to report it to.  Is there really a government agency that is responsible for prosecuting the owner of a web page who did not allow me to unsubscribe from a link in their email?  Boy, if there is an agency such as this, then I want my tax money back.  It is easier for me to hit delete than to fund a government program to address this.  As you can see they haven’t been doing a very good job because my email account is full of unwanted emails.

I have $50,0000 dollars that belongs to you:  Now these emails are really funny.  Years ago they were usually from Nigeria.  In Nigeria they call these 419 emails.  The 419 is a reference to the law against scamming people.  Over the years these are not coming just from Nigeria.  In the last year I have gotten emails like this supposedly from Iraq, China, Japan, and Afghanistan.  There seems to be scammers all over the world who have found a stash of money that once belonged to Saddam Hussein.  All of them have one thing in common.  They want your bank information and they want you to send them some money and imply that you will receive back even more money.  Who falls for this?  I think if you are stupid enough to send money to a stranger with the “promise” of receiving a bunch of money, then you deserve to be ripped off. Once again if it is too good to be true then it isn’t true.

I have no solutions to any of these email issues.  In time the scams will change and there will be new technology with new methods of scamming people.  It happened before the time of computers, like with the snake oil sales man.  And it will happen into the future.  Perhaps big brother will create a method of monitoring everything we do and then have the ability to take action on what it finds.  Oh yea.  We already have that.  It is called the U.S. Patriot Act.