The Real Superman Part XVII

The Real Superman Part XVII

By Jeff King

Whenever Dylan gets sick, he usually has increase seizure activity. That is one way we know that something is wrong with him. Since he can no longer speak we’re unable to know how he is feeling. He cannot tell us if his tummy aches or his head is hurting, or he has an earache. We’re always worried if something major happens, how we are going to know what’s wrong with him. For example, my appendix burst and I had to be rushed to the hospital and have an emergency Appendectomy. I knew something was wrong because my right side was in excruciating pain, and I was running a fever, but sometimes when Dylan is sick, we don’t even know it, because he never cries. He had quite a few ear infections where he ran a slight fever, but he didn’t really show any indication that he was in pain. He started having an increase in seizures, so we decided to take him to the doctors. When his pediatrician examined him, he discovered that he had an ear infection and prescribed antibiotics to clear it up. This has happened around twenty or more times when he was a little younger. We tried to have tubes put in his ears, but the hospital that we took him to refused to do it until he was seizure free for a month. This is impossible, he hasn’t been seizure free longer than a few weeks, and that was right after he started taking Vimpat, which was probably do to a combination of the Vimpat, Keppra, and the VNS. We thought that the Vimpat was going to be the magical cure for Dylan’s seizures, but, as usual once his body was used to the medicine, the seizures returned. Anyway, Dylan slept for about 12 hours one day. We knew something was wrong and we checked him out. He had a fever and we decided to take him to a local clinic to get him checked out.

We arrived at the clinic and checked him in. We waited about half an hour until he was called back to be examined by the on call physician that day. She checked him over and afterwards informed us that Dylan had an ear infection. She prescribed Bactrim which is a sulfur type antibiotic. We took him home and began to give it to him. The next morning Dylan was on fire his temperature was 103 and he had hives all over his face and body. We took him back to the clinic to see what was going on with him. The physician on call was a different one than the previous day. He looked at Dylan and said that they were going to call an ambulance and have Dylan transferred to the emergency room to the hospital where my wife had her surgery, where the doctor butchered her. I yelled at the physician, “Hell no, I am not taking my son to the butcher shop! I wouldn’t take my enemy there, or even a dog!” He looked surprised and asked if I was refusing to have him transferred there? I told him, “Hell yeah, I am!” and grabbed Dylan off the examining table hoisted him over my shoulder and carried him out to the car. I buckled him into his seatbelt and he, Terri, and I drove up to John Hopkins Emergency children’s center. They quickly took him into an examining room and immediately a doctor came in to examine him. She took one look at Dylan and said, “He looks like he has Stephen Johnson Syndrome and he would need to be admitted right away. A nurse came in and started an IV drip which had an antibiotic in it.

Dylan was hospitalized for a week and we were told he did indeed have Stephen Johnson Syndrome which was caused by the Bactrim. The time Dylan was in the hospital he lost some weight, because he had lost his appetite. This all took place right before Christmas, and Terri had to stay with him for the week while I worked and had to be home to take care of my other two children. I contacted the clinic and told them that they nearly killed my son and that I was going to put in a complaint against them. We had told them that Dylan had some allergies to certain medicine’s and the doctor at John Hopkins told us since Dylan was allergic to Trileptal then the doctor at the clinic should have known that Dylan would have been allergic to the Bactrim, because it had a similar chemical compound.

Dylan always seems to get some kind of sickness around the Christmas holiday. I mean I know he doesn’t intentionally make himself sick, it just seems like that is the times he is most likely to get sick. The worst thing for us is the fact that he can’t come up to us and say, “Mom, Dad, I am not feeling well.” The fact is most of the time when he does get sick, we don’t know he is. This little boy can be sick, or even have a fever and the majority of the time, he will still be running around between the living room and the dining room playing with his toys. We have to have great discernment skills to find out when he’s sick. As I said before, one way we know something is wrong with him, is he often has more seizures, but what we would give to have Dylan become seizure free. There is some hope we feel available and it is called Charlotte’s Web. (To be continued.)

Ode to Superman

This is a poem I am working on. I haven’t finished yet. I would actually like some feedback on it. It’s titled Ode to Superman

Ode to Superman

I watched him grow from a small child to struggle through so many things. So unlike any other boy. To wrestle just to make it through another day. He was born under a dark cloud, but his smile would ignite the sun and though his life is filled with shadows he will not cry one single tear.

The war he fights is his alone. He battles hard without a fear. With no concern with what tomorrow holds. He stays strong and carries on.

Carry on little Superman. On wings of hope you fly on high. No kryptonite can hold you down.  Spread your wings my hero fly.

The Real Superman Part XVI

By Jeff King

For a while Dylan did improve. He wasn’t having a lot of seizures and whenever he had them they were quick and he recovered pretty quickly, as if nothing even happened. We were able to successfully get him to where his helmet, but it was a hell of a fight to get him to do it. Every time we would put it on him, he would rip it off and throw it across the room. Most of the time he would smile about it. He knew what he was doing. In the end our perseverance won out and Dylan still wears a helmet today, but, man the struggle was real!

One early September day in 2014; right before school; Terri had just given Dylan a bath when a very freak accident occurred. Terri had a whole collection of brass and ceramic unicorns that she had collected since she was a child. Terri had just finished bathing him and put his helmet on. She was preparing to get him dressed. He had been running around the room like a Wildman, which by the way was normal for him when all of a sudden it happened. Dylan had an absence seizure and fell backwards hitting the shelf that housed all of Terri’s fine collectable unicorns. She called for me I was downstairs getting ready for work and I hear her scream my name, so I go flying up the stairs like a bat out of hell. There was blood everywhere. We lifted Dylan up off the floor and sure enough he was bleeding, but we weren’t sure from where. I quickly removed his helmet to examine him. That’s when we noticed that he had a small puncture wound in the back of his head, “But how?” we asked ourselves. He had his helmet on. Terri looked over at the shelf to examine the damage when she noticed a particular ceramic unicorn which was intact all except for the fact it was missing its horn. I picked up Dylan’s helmet off of the floor to reexamine it. It was then that I found the unicorns horn, it was wedged in a small hole that was created when Dylan fell on it. We cleaned him up and the mess and he stayed home from school that day.

Dylan has always found a way of destroying things; sometimes they were accident, while other times he would purposely destroy things. Here is a list of things that he has destroyed: Our semi new flat screen HD TV that we only had for a year. We had just finished paying the credit card off that we used to purchase it with. Dylan had an absence seizure and fell head first into it. We had to borrow a small TV from my sister-in-law until we were able to buy a new one. He has broken 4 sets of lamps, by just pushing them off the end tables. It takes him several times of knocking them off, but eventually he is successful. We always try to correct him, but he just doesn’t seem to understand. He has torn up several sets of living room and dining room furniture as well. He just ripped the fabric off one of our sets of living room furniture. We bought nice leather furniture and he was good with it. He never once tried to tear that set up, but over the years from wear and tear it eventually wore out, so we waited until tax time 2014 and bought this furniture with cash. It cost us about 1300 dollars. It wasn’t made very well and for some reason Dylan decided that he wanted to tear it up. It was fake leather and Dylan had it destroyed in less than 4 months. We just bought another leather set on credit and he seems just fine with it. We purchased a dining room set a few years ago. The table was very nicely made and we still have it today, but we have went through three sets of chairs. Dylan would go out in the dining room and knock the chairs over. He reminds me of the Tasmanian Devil from the Warner Brothers cartoons. He has destroyed pictures, which some he has stood on the furniture and ripped them off the walls. He ripped Terri’s dream catchers up. We caught him several times with the feathers still in his mouth. Like a cat that just ate the canary found with the evidence still in his mouth. It sounds funny, but at the time that he is doing these things, we don’t find it very funny. We have tried to stop him several times, but he is like a tornado going through a room, or a bull in a china shop. No matter how many times we stop him and sit him down and tell him no, he will wait until an opportunity arises and he will go tear things up.

He has torn up our plants several times. Just recently he was playing in his toy box and I was watching TV when he came out into the living room and his face and hands were covered in dirt. He had been into Terri’s plants. I had to clean him up as well as the mess he left for me. He came in and looked at me to show me how proud he was of himself. He has ripped up my other children’s homework, my college papers. My niece gave him the name the Ripper, because when we were visiting them one day he had gotten into her room and ripped up one of her books. She came running into the living room crying “Dylan is tearing my book up! He is the ripper!”

Whenever we have told people about this they usually tell us things like, “Buy a gate to keep him out of places.” We actually have done that we have several gates put in place; one at the bottom of the stairs so Dylan cannot go up the stairs for fear that he will have a seizure and fall down them and the other blocks him from the kitchen, so he can’t get into the kitchen to pull the stove over on himself; which he has actually done several times before we got the gate. The gate guarding the kitchen has been compromised several times. Dylan has fell on it shattering it twice, both times Terri has had to glue it back together, because the gate was specially ordered on line and we can’t find any like it at any of the stores. (To be continued.)

Dylan’s new Superman Helmet!

By Jeff KingSuperman 3Superman 4Superman 5Superman1Superman2

This is Dylan’s new Helmet that was specially designed for him by some college Engineer students. I entered a contest and my essay was chosen we were asked what we needed for Dylan and we told them a new helmet. They asked us if there were anything we wanted special and we told them we call him Superman and this is the design they came up with. I Love the D inside the shield instead of the S

The Real Superman Part XV

The Real Superman Part XV

By Jeff King

Dylan was doing so well. He no longer was laying around like a lump. He was back! He was all over the place. We had gotten his helmet and tried several times to make him wear it, but we were unsuccessful. Every time we placed it on his head he would rip it off and toss it. We got so tired of fighting with him, we just decided not to try to force him to wear it.

We went to the mall and Dylan would run right to the elevator to watch it go up and down. We were so happy, because the light had returned to his eyes and life had returned to his body once again. This was so amazing. We went everywhere. We even decided to take his chair out of the trunk, because he didn’t have a need for it anymore. I took him to another mall where he enjoyed riding on the little carrousel that was there. He rode it several times and then I took him off of it to walk down to meet Terri and the children where they were getting their hair cut. Dylan took off. He began to run. He ran just like he used to. I was so happy to see him running once again. My man was back and he had proved once again that he was indeed Superman, and those seizures, which are his kryptonite was not going to defeat him. I gave chase, because I still was unsure about him running. I kept thinking, “God please don’t let him have a seizure”, because the floor was concrete and then suddenly he dropped to the floor head first. He lay there in a heap, flailing around uncontrollably. I ran to retrieve him off of the floor and there were several mall kiosk employees who ran to help us. One gentleman grabbed a slew of paper towels and some ice to put on Dylan’s forehead, which he had slightly busted open, but fortunately it was not bad. He did have a goose egg protruding from his forehead, but he was fine. He never cried or screamed or anything. We continued to walk to meet my family, but by now I had firmly taken his hand and made sure he walked beside me.

He begin to have several of these seizures where he would just drop to the floor, ground, etc. They were the most frightening ones, because you never knew when they were going to happen. I had recently been hired as a permanent part time teacher’s assistant at the school I worked for. I started out a one on one temporary employee. I worked with two students who had autism and behavioral issues. I was told that I did so well with them that the school wanted to hire me permanent part time and as soon as a fulltime positon became available then it was mine.  School was scheduled to begin on August 26th 2013. The day before school was to begin. I was upstairs when Terri screamed for me to come downstairs. I ran downstairs. I was greeted by a scene that looked straight out of a crime scene. Blood was everywhere and Dylan was laying on the living room floor in a pool of blood convulsing violently. He had an absence seizure and had fallen and busted his head on the corner of the entertainment center. I had just recently taken a first aid and a CPR course in the summer. I grabbed Dylan up and told my daughter Destiny to grab me something that I could pack his wound with. She grabbed a bunch of paper towels and I reluctantly used them to pack his head to try to stop the bleeding. I told her to call 911 which she did. I examined the gash in his head and it was bad. It was as deep as it was wide. We waited for the paramedics to arrive and they took over. Dylan was sitting on the floor like nothing had even happened to him. He didn’t cry or give any indication that he was ever in any pain. The ambulance took him and my wife to the ER and I followed in the car while Destiny and my son Dacota cleaned up the mess.

I arrived at the hospital several minutes after the ambulance. Once inside the immediately took Dylan into a room where a nurse attended to his wound until a doctor could see him. The doctor came in and examined Dylan and determined that he would either need several stitches or staples. We actually opted for the staples because they would leave less scarring and thank God we had recently taken him to get his hair cut so it was easier for the doctor to clean him up and staple the wound closed. It was on the top of his head, which was another blessing so whenever he grew his hair back the scar would be almost unnoticeable. The doctor put 8 staples into Dylan’s head and once again he never cried or screamed out. His threshold for pain is very high. The only time he cried was whenever we were holding him down, but other than that this little guy is amazing. This is indeed the Real Superman and he was amazing. (To be continued!)

The Real Superman Part XIV

The Real Superman Part XIV

By Jeff King

About four months went by and Dylan was doing so well with the VNS. He had become very vocal, but still didn’t talk. We had to go up to his neurologist every two weeks to have his VNS adjusted. Right after his 4th adjustment Dylan began to have some real bad acid reflux. This became a big concern when the majority of the time he was spitting up bile. It began to take a toll on his teeth and the acid from his stomach began to eat away at the enamel. We voiced our concern to both his neurologist and his pediatrician. We also became quite concerned that this reflux would damage his esophagus.

We made an appointment with his neurologist and talked to him about our concerns. He set us up an appointment with a gastroenterologist from John Hopkins. She did several test on him and prescribed a medication that we would end up using for about 9 months. It was erythromycin. This was a small dosage that they used and in theory it was supposed to help empty the intestines and protect the esophagus from any damage that could be caused by the acid reflux. This really didn’t seem to work that well with Dylan and we had to now by bibs for him to wear, because his clothes were getting ruined because he would reflux all day. The teachers at his school brought in oversized buttoned up shirts that they would put on him to keep him from staining his clothing. This was a terrible time in Dylan’s life, because he couldn’t really eat much and we started giving him ensures and baby food to try to get him to eat without spitting everything up. Terri and I were sure that this was a side effect of the VNS, but Dr. Rubenstein continued to disagree with us, even after we had found some literature stating that fact. Dylan’s teeth had gotten so bad and although Terri would brush them daily, it didn’t really matter. They were all rotting out, because the acid from his stomach had just eaten through them.

We made an appointment at the University Of Maryland Dental Department. They would have to put Dylan asleep so that they could pull out his rotten teeth, which at least were still all of his baby teeth and they would try to treat him with some things that would prevent further damage to them, but they informed us that it wasn’t guaranteed and that we would definitely have to try to brush his teeth at least twice a day, but they recommended three times a day for him. This was almost physically impossible to do, because Dylan absolutely hated having his teeth brushed, or his mouth messed with at all. Dylan was very strong and he would fight hard to stop you from carrying out any plans to brush his teeth. It sometimes took the two of us just to hold him down to brush his teeth one a day and now they really wanted us to try to brush them three times a day.

The anesthesiologist put Dylan out and a team of Dental surgeons began to work on Dylan’s mouth. It took them about an hour and a half before they were done. They took him into recovery and sent for us. We went into his room and tried to wake him up. He wouldn’t budge. We waited about a half an hour and began to try to wake him again, but for the second time we were unsuccessful. He was out cold. We tried this several times for the next hour and a half. The nurse was in several times and tried to wake him too, but she too was unsuccessful. She checked his vitals and everything was fine, he just wasn’t ready to wake up yet. Terri and I did become concerned that maybe the anesthesiologist gave him too much anesthesia? We thought.

After several more unsuccessful attempts the nurse contacted the anesthesiologist who then decided that it was in Dylan’s best interest to stay at least overnight for observation. Terri stayed with him while I went home to attend my other children.

The next day he was released and was just fine. This was the first time that he had a hard time coming out of the anesthesia even though he had been put to sleep several times in the past.

Dylan continued to have the reflux and now the gastroenterologist advised us to consider letting her put in a feeding tube. She said that this would most likely stop the reflux. We left her office upset, because we didn’t want to put Dylan through anymore surgical procedures. We decided that we would have this procedure done, because Dylan had lost so much weight, he began to look like a skeleton with skin. He looked very sickly. Thank God our insurance dragged their asses to approve this procedure. We took Dylan to Dr. Rubinstein who wanted to make another adjustment to the VNS, but we told him NO! He was still having seizures, but we knew that the VNS was definitely the cause of his reflux, because he didn’t have it before the VNS. We finally got approved for the feeding tube and were making preparations to have the gastroenterologist do the surgery, but she happened to be on vacation, so it would be at least another 2 months before we could schedule the surgery. Within that two months something miraculous happened; the reflux, which had come on so suddenly after all the adjustments with the VNS seem to vanish after we stopped his neurologist from adjusting the damned thing. We decided to postpone the feeding tube indefinitely!

For the next several months Dylan continued to gain weight. He started looking healthy again. He no longer looked sickly. He was having seizures, but not like he had before the VNS. He was having more absence seizures where he would just fall out and hit his head and face. We decided to contact Dr. Rubinstein about ordering a helmet for Dylan.  (To 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