epilepsy – Page 7 – thetruesuperman

The Real Superman Part XIX

By Jeffrey King

Dylan is 12 years old and as I have explained in previous blog posts he still wears diapers. We were putting out a lot of money on diapers, wipes, etc. We were actually thrilled when we discovered that Medicare would pay for his diaper supplies. It has saved us thousands of dollars over the years. Without that help there is no way we could afford to keep him in diapers. Before he began to have seizures Terri and I and his teachers at school all were trying to potty- train him. We were having some positive results, until he begin to have the seizures, which have robbed him of so much cognitive abilities. He has regressed so much that everything that he once learned or knew has long since disappeared.

I know that there are plenty of special needs parents out there who experience the same things that we have to experience on a daily basis. It never fails when we’re out and about, Dylan has to go in his diaper. We have a small Hyundai Sonata and there are many times that we have to find a parking lot to change him. I usually pull into the back of a parking lot away from any parked cars. I pop the trunk, which I leave it opened to actually block the back window. I grab Dylan’s Superman Backpack and take out a diaper, some wipes, a plastic bag and some hand sanitizer. If it has been hot out, the wipes are usually hot, so, I usually keep a bottle of water up front with me to cool down the wipes, and of course in the winter the wipes are cold and quite often frozen, therefore, as you can imagine, not a pleasant feeling. Regardless this is a necessary evil that has to be taken care of, because we don’t like to let Dylan sit in a dirty Diaper. One afternoon while we were out Dylan done his business and I pulled into a Wal-Mart parking lot. I drove to the back lot by some trailers. I popped the trunk retrieved the materials that I needed to change him. As I was changing him, suddenly a car pulled up; of course it was a police car. The officer got out and approached our car. Terri rolled down the window to greet the officer. He immediately asked her if everything was okay. She explained that I was changing my son and explained to him our situation. He was very kind and told us to have a nice day. I knew one day that this would probably happen. We have had other people ride up on us. I guess they are trying to be nosey. It is a shame that even though most malls and department stores have family restrooms where you can change your child; the changing tables are only for infants and small toddlers. Companies really don’t take into consideration families that have special needs children, or family members that they need to care for; that includes toiletry needs. It is my hope that one day this will change and companies will begin to take into consideration these people.

Two years ago we took the family to a theme park. I will not disclose the name of that park, but I will say one of its roller coasters has the name of this titled post. We had Dylan in his Wheelchair/ stroller and we were going to the rides. I have to say I was impressed how they accommodated Dylan and all special needs individuals when it comes to their amusement rides. They allow people with disabilities and handicaps to get on the rides first and let them come through the exits, so as they do not have to wait in line with the crowds. We were having such a good time and we decided to visit their water park. I took Dylan in the bathroom to change him, but was shocked to find out that they didn’t have any family restrooms with any changing tables. I had to take out a sheet that we keep folded in his diaper bag and had to lay it on the floor right by the sinks, because there wasn’t any room in the stalls to change him. Luckily there wasn’t anyone in the restroom at the time and one of the security guards came in. He kept everybody out until I had finished changing Dylan. What a great person he was and I thanked him several times.

After we finished at the water park, we decided to go to one of the shows that the put on in their outside theater. This particular show was a Wild West stunt show. We entered into the arena, which had posted on the outside on a sign “No Strollers allowed in the seating area” I didn’t think anything of it, because Dylan’s chair was actually a wheelchair. Anyway while we were headed to the handicap seating area a security worker came up to us and said, “I am sorry sir, but you cannot bring the stroller in here, it has to be left outside.” I was furious I immediately left and went to find the customer service building to complain about this policy. I got there and told them that this policy was wrong and that this chair is considered a wheelchair. The manager agreed with me and gave me a coupon book with free food coupons. He apologized and called the theater. They sent the security worker up who promptly apologized to me and took me and Dylan back to the show. They brought us up front and we watched the show and all the stunt actors came up after the show to personally greet Dylan and my two other children. They made good on a mistake and I was very pleased with their handling of this situation. I did an online survey about the incident. On the form they had a place where you could enter a comment. I entered this. “I was pleased how your organization handled this situation. I really have only one concern. I would wish that you would consider installing special needs bathrooms for people with special needs.” I added some other things, but that was the most important thing I felt needed addressing.

AS I said before I know there are plenty of families that know our experiences. There are also others that don’t have to consider what we have to actually deal with on a daily basis. It is my hope to bring awareness for parents and families that have children, or family members with special needs that have to deal with these type of issues. I know many companies have stepped up their game to accommodate us folks, and we surely appreciate it, but there is still work to do. We still have other issues that have to be addressed. You see on the daily news about people being brave and standing up for issues that they believe in. We are hoping that people will stand up for people like Dylan and others like him. We have to be their voice, because many of them don’t have one. We have to be their advocates. Please stand up with us! Thanks! AS always, the Real Superman will continue! Until Next time!

The Real Superman Part XVIII

By Jeff King

Charlotte is a little girl that suffered the same intractable seizures that Dylan has, but quite possibly worse than what Dylan has. She was having up to 300 seizures in a week, and she was incapable of doing anything, but having seizures. Her parent’s the Figis tried everything possible to give their little girl a chance at a normal life. They even tried the ketogenic diet, which actually was spear-headed by Dylan’s neurologist, Dr. James Rubenstein. We actually considered this diet for Dylan, but Dr. Rubenstein didn’t think Dylan could benefit from it, since Dylan loves to eat. That is one thing that he loves to do. His favorite food has got to be egg salad, but he loves any bread, therefore, the diet would be very hard and expensive to implement, and we just don’t have the finances to incorporate it into Dylan’s diet. That being said, the Figis tried this diet, but it didn’t work for poor Charlotte, then they discovered a something that seemed to prove very promising to them. Charlotte’s parents found out that there was a boy being treated for Dravet syndrome (Intractable epilepsy) with a form of Cannabis oil that was low in tetrahydrocannabinol, but high in cannabidiol. This was actually working for this child and it had reduced his seizures by half. Charlotte’s parents found a dispensary in Denver and paid for a high strain of Marijuana and employed a friend to extract the oil for them. They tried it on Charlotte and immediately they began to see results. Charlotte went several hours without any seizures and then several days went by; still no seizures. They had discovered a medical miracle. Charlotte’s life was forever changed. She is able to walk, talk, and do all the things a normal child is able to do. To read more about Charlotte’s amazing story please go to this link http://www.cnn.com/2013/08/07/health/charlotte-child-medical-marijuana/. Upon reading little Charlotte’s story I was so overwhelmed with joy. For the first time, I felt like there is certainly hope for Dylan. I shared the story with Terri.

We both did more research and found hundreds of cases like Charlotte where this CBD oil was working wonders on people with intractable seizures. Where other medications wouldn’t work, this stuff was working, and without all the negative side effects that these man-made poisons were causing in our children. There is only one problem, medical marijuana isn’t legal in the state of Maryland, at least not at the time that we were researching it. They have since legalized medical marijuana in our state, but, the oil is still not legal.

We even considered selling our house and moving to a state where it was legal, however, I am a permanent substitute teacher and I only make 22, 200 dollars a year. Terri doesn’t work, because someone has to be home at all times in case Dylan gets sick and needs to stay home. We do get about 650.00 a month in social security for Dylan, but that is based on my income. The more I make, the less that they give him. It is a vicious cycle and they have put us through the wringer at least once a year since we have started getting it for him. The actually act like the money is coming out of their pockets. The social security administration is the worst government entity that I have ever had to deal with. I will explain that in a later post though.

Anyway, we decided that it just wasn’t feasible to sell our house, which our mortgage is only 650.00 per month, because it is a town house that I bought as an estate sale. We bought what we knew we could afford at the time. We only had two children then and this is the only house that Dylan has ever known, unlike our other two children, but anyhow, my two other children were in high school, so we really didn’t want to pull up roots and move them somewhere else; let alone another state.

My daughter Destiny graduated with honors this year and wants to be an early education teacher, which she decided since she has had to learn to help take care of Dylan at an early age, so she feels drawn into the education field. We are very proud of her. Our son Dacota will be a senior when school starts again in August. He is thinking about taking up graphic art and design. He is actually good at this already. We are also very proud of him. These two children have grown up knowing what it is like to love and care for a person that has special needs. It has helped them to develop real compassion and ultimate character traits. We sure didn’t want to move, because it just wouldn’t have been fair to them. So for now, we have been writing letters to state and local legislators trying to convince them to champion our cause to get this Charlotte’s Web oil legalized here in Maryland. I am even thinking about including a poll on the blog and asking people to vote, so we can present it to our congressman.

I recently became concerned with another issue that we were facing with Dylan. He is a growing boy and he is very solid. The last time he was weighed he already weighed 95 pounds. This may not seem like a big deal, but our room is upstairs, and yes, he still sleeps with us, because as I said in an earlier post, that we became concerned that he may stop breathing in his sleep, so Terri and I decided that it would be best for him to sleep with us, so that we can monitor him through the night. Parents shouldn’t have to worry about these sort of thing, but, it is what it is. I have been obese for the past two years and hadn’t been really strong enough to continue to lift Dylan up to take him up to bed when he fell asleep downstairs, so in February of this year, I began a diet and exercise program in which I have lost over 30 pounds. I have gained more muscle. I have recently contacted some companies to see if they wanted to exchange products for a review on my blog, so I will be adding those reviews whenever I receive these companies’ products. I figured I needed to get stronger and healthier so that I can do everything in my power to be around for Dylan as long as I can possibly be. As I stated in a previous post. I made a promise to him, that as long as I had a breath in my body and a beat in my heart, I would never place Dylan in a healthcare facility. I will continue to keep everyone updated about the Charlotte’s Web oil and these companies’ products. I am also interested in other things which could be helpful for Dylan and would appreciate any ideas, or feedback that anyone may have! Thank You! Please continue this journey with us and as always we appreciate your comments and feedback. (The Real Superman will as always be continued.)

Parents of Children with Disabilities

Good afternoon everyone. My name is Jeff King and I have a son who was born with a rare chromosome disorder. I call it 3X15C. There is no real name for it. He is only one of about a hundred known cases worldwide. This is a triplication of Chromosome 15. For anyone who knows chromosome 15 duplications are common in children with autism. My son has a triplication of that chromosome, therefore, he has autism and was actually diagnosed as severely intellectually challenged. At the age of seven-years-old he began to have intractable epilepsy. He is now 12 and although he is on medication and has been fitted with the Vagus nerve stimulator, he continues to have severe seizures. My wife and I have just recently started a blog dedicated to him. It is about his journey and ours as well. We have titled it “The Real Superman.” because we truly believe he is not only super, but our hero! We are looking for parents, family members, friends of people with special needs and also Sped. Ed. Teachers and people who work with our children. It is our hope that the story that I am telling will not only encourage others, but also offer inspiration and hope. Please come check it out and join our blog page and feel free to leave a comment or two. We are also looking for people to join us at Parents of Children with Disabilities. We only have 3 members and would love more. That is at https://plus.google.com/u/0/communities/107339921749944736766

Thanks!

Jeff King

The Real Superman Part XII

By Jeff King

We began hearing a term called VNS. This procedure was supposed to be working miracles for people who suffered from intractable epilepsy. I didn’t even know what VNS was, let alone how it was done, so I began to research it. I went to the Epilepsy website and began to read about this new and innovative procedure that was helping tens of thousands of people who suffered from epilepsy. They termed this new procedure as, “the pacemaker for the brain” (Schachter, 2013). This device is placed under the skin on the left side of the chest. The wire runs to the Vagus nerve which is a part of the autonomic nervous system. This nerve controls functions of the body which are not under voluntary control. The neurologist sets the devices impulse to send a small jolt of electricity to the Vagus nerve. In theory this can stop a seizure from happening. You are also given a magnet that you can use for any onset signs of seizures, or when a seizure comes on. You placed the magnet over the stimulator outside the chest and in theory, it stops the seizure. You can learn more about it at http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns. This sounded wonderful, a very promising weapon against seizures. The more I read about it as well as testimonies from patients and parents and family members of patients the more I liked it. My wife had also checked it out and we were determined to talk to Dr. Rubenstein about it.

On Dylan’s next appointment to see him he asked us how everything had been going for Dylan, we explained how Dylan just laid around very lethargic and was continuing to have up to 40 seizures a day even on the medicine. We asked him to help us order a special wheelchair for Dylan, because, I could no longer carry him around because, he was getting so heavy, plus he was dead weight. He agreed and put a request into Medicaid. He started talking about maybe introducing a new medication into the mix. Terri and I quickly cut him off and almost in unison said that we wanted to try the VNS on Dylan. He listened patiently and then said, “I couldn’t agree more.” I am glad that you both are very pro-active in Dylan’s health and you both are well informed. I definitely believe that he is an excellent candidate for this procedure.” We talked a little more about it and he gave us all the details about what to expect and what side effects could also occur with this procedure. We all came to the agreement that Dylan would be fitted with the VNS and we began to plan the date of his procedure. His surgery was set for December 22nd, 2011. Which was about three months away.

Medicaid had approved him for his wheelchair, which was great for us, because now we were able to go to the store and take Dylan in with us. Before that I would sit in the car with him while Terri went inside to do the grocery shopping, which was okay, but I believe it was better if Dylan was able to go into the stores too. I mean his life consisted entirely of laying around having seizures. He no longer watched any TV. He was just there. It sounds cold and harsh, but that’s the best way I can describe him. I can tell you as a father, I cried many tears as I watched him slowly disappear his whole personality was vanquished. It was a very sad and horrible existence that he was living. I thought about the Metallica song “One” “Darkness imprisoning me All that I see Absolute horror I cannot live I cannot die Trapped in myself Body my holding cell” (James Hetfield Lars Ulrich, 1993).

I thought how sad, his body was his holding cell! This made me weep hot tears of sorrow ran down my face! I was sure hoping that the VNS would deliver my son from that darkened abyss that he disappeared into.

When we got his wheelchair we decided to go shopping at our local grocery store. I got the chair out of the trunk and set it up. I got him out of the back seat and placed him in his chair. We went grocery shopping. He just sat there impassively, but at least he was out and about, so that was a good thing. We finished shopping and we go outside. I was pushing Dylan and Terri was pushing the shopping cart. There was a car blocking the handicap aisle that was in front of the store. Terri yelled out, “How rude!” The driver of the vehicle pulled up out of the way, but started cussing us out. I told the lady that she didn’t want to mess with my wife and that she was illegally parked there anyway. She got out of her car, but stood inside her car door and hurled insults at us. Then she says to me, “You’re not even a real man, because you couldn’t even create a whole child!” Man I was enraged, but Terri was twice as angry. She wanted to go after this vulgar extremely evil women, but she didn’t. She just walked away! What an offensive wicked thing she had said! I am not going to lie, I cursed her and said that one day, that she would reap what she had sown. She reaped hate she will definitely sow that same hate! This was just another of the many incidents we would have along this journey. The hate and the evil that spews from the mouth of people against people with special needs, children with special needs! I never hated anyone in my entire life, but as God is my witness, if that woman would have choked to death on her hateful words, I would have begun to cheer right then and there. Don’t get me wrong, I really don’t wish those type of things on anyone, but it was very hurtful. It just made me hurt for my son and I just couldn’t believe this woman would say such an ugly thing about a child. (To be continued.)

The Real Superman Part XI

By Jeff King

The Real Superman Part XI

By Jeff King

Between the seizures and the meds that Dylan was on, he had regressed; mentally he was possibly 6 to perhaps 9 months in his mind. He no longer talked he would just lay around. We tried to get him up and around, but his muscles would no longer allow him to move fluidly. We were going to try a new medication trileptal. It was very promising. Right away he began to have an allergic reaction to this drug and broke out in hives. We stopped giving it to him right away and called his neurologist. He called us back and told us to continue giving it to him for the next couple of days, but we didn’t. We made another appointment with the neurologist and while we were in his office he began to argue with another neurologist that he shared an office with. It was very unprofessional and the office was full of patients. After he called us in the back to see him, he asked what we were seeing him for. Everything that we told him previously he seemed to have forgotten. We had to explain things all over again to him. He asked us are we still giving Dylan the trileptal and we told him no we stopped a few days ago! He looked at us like there was something wrong with us. I became angry and told him that I wasn’t going to keep giving Dylan the medicine after he was clearly having an allergic reaction to it. We promptly walked out of the office.

When we got home I began to search for a new Neurologist. We found one who worked out of Kennedy Krieger Institute and was a neurologist at John Hopkins University also. Dr. James Rubenstein. This guy was wonderful! He was very caring. He listened to all of our concerns. This wonderful doctor had an amazing bed-side manner reminiscent of the old time country doctors. You could see the empathy he felt towards Dylan. He didn’t look at Dylan as just another patient, one more number. No this gentleman was the real deal and he was very caring. He also answered every question or concern that we had. He took extensive notes and would ask us questions too. The other neurologist was like Dr. Jekyll and Mr. Hide. I will just refer him to that name, because, I don’t want a law suit against me for deformation of character, but this other Dr. was completely terrible when it came to Dylan. We had a wonderful first meeting with Dr. Rubenstein and He said that we will continue Dylan on the Keppra and slowly wean him off the Clonazepam, because we were sure that this was making him very lethargic. We went home thinking that we have finally found the right neurologist for Dylan and we were absolutely right.

Dylan didn’t make too much progress as we slowly weaned him off the Clonazepam. He still was very lethargic, but the seizures seemed to only worsen. He was having seizures where he would go into full grand mal seizures and when he came out of them he could no longer walk, or stand. His whole right side was like he was paralyzed. These seizures really frightened us and we noted each and every one that he had. He had also had some that were so severe that we had to give him Diazepam anally to force them to stop. Then he was rushed to the hospital several times to be checked out only to have him released in a few hours. This was very emotionally draining on us.

It was around then I was researching seizures when I first heard the term intractable epilepsy, which meant epilepsy resistant to all drugs. As I was reading about this I also found an article on SUDEP, which is an acronym for Sudden Death in Epilepsy patients. This scared me half to death and I filed it away, I hadn’t wanted to share it with Terri, because, it would only make her cry. Then Unique which was the rare chromosome disorder support group started running an article on children with Idic 15 dying un-expectantly in their sleep. This brought tears to my eyes. I read about a little ten-year old boy who had went to sleep only to never awake the next morning. I didn’t want to tell Terri any of that, but little did I know, she had already read the article. Dylan would never again sleep in his own bed for fear he would have a seizure and we would not hear him. He has been sleeping in our bed ever since.

Parents shouldn’t have to fear these things, but this is the cruel hand that fate has dealt us. We could sit back and be passive victims or we could take this fight on tooth and nail being proactive and gaining as much knowledge as we could possibly gain. Dylan needed us to be the best parents that we could be and that is exactly what we were going to do! We would never give up on him! Surrender was not an option! We were only getting started on this fight and I’ll be damned if we weren’t going to do everything in our power to make sure Dylan would fight this too! (To be continued.)