seizures – Page 4 – thetruesuperman

A special gift for Dylan

One of my old friends from my neighborhood started sharing Dylan’s story with her thirteen years old son Nathan. Nathan was touched so much by Dylan and his story that he wrote him a letter and made him a Superman Design. He prays for Dylan on a daily basis, along with his parents. I just wanted to share this with everyone. Nathan thank you for thinking of Dylan and your beautiful gift. Thank you for all your prayers and good thoughts for Dylan. Thank you LouAnn Smith for your incredible love! May Almighty God bless you and your family tenfold! I Love you my friend

The Real Superman Part XXII

By Jeff King

The Real Superman Part XXII

I know that I haven’t written in forever. I have been extremely busy and there has been a lot going on. Let’s jump right in. The last post I wrote about was trying to get our County Executive Steven Schuh to get on board allowing medical Marijuana to be made available to patients in the county. He and the county council just zoned their way around it though. They’re idiots in my honest opinion. Anyway here is what has been going on with Little Superman. In previous blogs, I mentioned a good friend, Chris Hartsell who I met through a friend of one of my older son’s. This gentleman wanted to help us obtain some medical cannabis to try out on Dylan. On Thanksgiving Mr. Hartsell arrived at my home with a tub of butter, which he made using cannabis and coconut oil. I gave Dylan his first dose later that night and for the first time in what seemed forever, Dylan didn’t have a seizure for 24 hours. Afterwards, though he did have a very bad tonic -clonic seizure which really did him in. We decided to increase the dosage and the frequency of the medication and after tweaking it we came up with a dosage that has definitely decreased the frequency of the seizures, but also the length of the seizures. He has also gone several days without any seizures as well. They haven’t subsided altogether, but, we have noticed a drastic change in Dylan. Dylan has been a lot more vocal and animated since he has been taking the whole plant therapy. I am aware that this medicine does have some THC in it, but it also has high amounts of CBD and that’s what we’re going for. The THC is probably minimal; however, I do believe Dylan probably is getting a high off the medication, but, it can’t be any worse than the legal poison we have to have him ingest two times a day. He has been a whole lot happier and the teacher’s and TA’s at school said that he has been more focused and is making a lot of eye contact. They said he has been very vocal and much happier than he used to be, so to me, that’s a win, win. There seems to be a little side effects, though; some nights, Dylan will not sleep. He will stay up all night and then he will sleep the entire next day. Another side effect is he is hungrier, but I believe that’s to be expected.

Anyway, we took Dylan to see his new neurologist, Dr. Tanjala Gibson at Kennedy Krieger. He was very animated and even got up out of his chair. She was happy about how well he was doing and we did actually let her know that we wanted to try the CBD oil and when she was in agreement with Terri and me, we told her that the Dylan that she was seeing before her; didn’t look like the Dylan of two weeks ago. We already have him on CBD. We didn’t tell her that it was the full plant therapy, but we’re planning on telling her at his next appointment. He has been on this now for about a month, and we have noticed some real good changes. He is trying to talk again and if he does, it wouldn’t be nothing short than a miracle. Dr. Gibson did tell us that one of her colleague’s was doing a current study on cannabis and that it has been going on for over a year, and the results were actually positive. She said once the state gives the okay that she will get her license to dispense it to us for Dylan. We are really wondering what the actual Charlotte’s Web oil would do for Dylan. Hopefully, we will be able to find out soon.

As a parent who must sit by and helplessly watch their child suffer through these demonic seizures; to see your child’s personality being stolen away by these vampires, that drain him and leave him a shadow of his former self; there is nothing you wouldn’t do to try to cure your child, or help them in any way possible. I know that what we are doing is illegal, but I can attest first hand as to the great changes that we are witnessing on a daily basis as little by little Dylan is coming out of the darkness that once held him captive. Slowly but surely his personality is returning. Make no mistake, this hasn’t stopped the seizures completely, but it sure does offer us hope. It offers Dylan hope. Every day we get another little glimpse of our champion. The little boy that does battle with the one kryptonite that has time and again brought him down. He has never given up on the fight and neither will we. Until next time!

His awesome shirt.

Daily News!!

By Terri King

Hello, everyone!! We had a wonderful Thanksgiving with family and friends. Dylan has been in a great mood the past few days. Dylan really enjoyed dinner. I have to say he enjoyed the mashed potatoes and gravy the most. He has been very vocal and animated the past few days. It sounds like he is saying bad words like b*tch. Our granddaughter has been staying with us for a couple days while her mom gives birth to her baby sister.She is beautiful her name is Everleigh 6lbs 9ozs. Dylan must be getting adjusted to her being here now because he isn’t just sleeping anymore.In fact the past few days he has been up till 3:00 and 4:00 in the morning.My house is a mess between the both of them.ofcourse he is still having seizures but not as many as he was having.

FB_IMG_1448744307920 — Everleigh the new addition to the family.

20151127_035059 — Dylan staying up till 3:00 am

Daily News!!!!!

Sorry, it’s has been awhile since I written anything, but I have been busy finishing up my classes and spending time with my family. Dylan has been doing okay. He was sick for a few days with a head cold. They canceled his neurologists appointment on the November 17 and rescheduled it for December 8 and I am on the cancelation list as well. His seizures are still a big concern. The battery change in the VNS didn’t make a big difference in the duration time of the seizures. Dylan had a really bad seizure the other night because we gave him his medicine a little late. His eyes were fluttering and his whole body was so still and it seemed like it lasted forever. I really hate forgetting to give him his medicines. The petition is still gaining signatures we now have 84,180 signatures. We need this law passed so my son can start receiving the treatment I believe will stop his seizures. This is picture was taken after he had his bath.

20151118_070005

https://www.change.org/p/don-t-stand-in-the-way-of-my-son-s-health/c

The Real Superman Part XX

By Jeff King

It has been awhile since I have written. I was bogged down working at summer school and studying my last two college classes of the last semester. I just recently finished both. There has been a few things that have taken place since I last wrote The Real Superman. Dylan was scheduled to have the battery in his VNS changed today, which is 8/5/2015. It never happened, because, the surgeon’s secretary would call every few days to move the surgery further. It was originally scheduled for 7:00 AM, but she called us yesterday after calling us two previous time to reschedule and make it later. Now they wanted to schedule it for 2:00 PM, which is actually insane, because, Dylan wouldn’t have been able to eat anything after 12:00 AM this morning. That means he would have to go about 18 hours before he would be able to eat anything. I guess when you’re second class people these surgeons can reschedule you anytime they feel like it. Dylan being possibly two years old mentally, would be very angry if he was unable to eat for that long, and besides, it isn’t good for his health to go for that long. I am considering on launching a complaint against this surgeon, because, it is ridiculous to expect a child that is like Dylan to go that long without anything to eat.

I truly have a problem with the way people treat children with special needs. Don’t get me wrong, it isn’t everyone that does it, but when you’re a parent of a child that has special needs, you notice all the stares and whispers. You notice how some people treat you differently. Just as I was explaining. If we were people that had top of the line health insurance and not Medicaid for Dylan, but perhaps, Blue Cross and Blue Shield; or if we were paying cash, I can bet money that this doctor wouldn’t have continued to put Dylan’s surgery off! It just peeves me! Goddamnit, we are not second class citizens. We matter too! These children matter! We ended up canceling it and rescheduling it for next Thursday. The Secretary told us that if we didn’t reschedule it for next week then we would have to wait until October before we could reschedule it, because the surgeon was going on vacation. Must be real nice? Anyhow, I guess we should be use to this sort of thing by now, since these are the things we have had to deal with since Dylan has been little.

I have written before about how people would say things, for example the woman at the mall who accused Dylan of pushing her kid off the Humpty Dumpty Sliding board. Then there was the woman who blocked the wheelchair access aisle so we couldn’t get Dylan out of the store in his wheelchair. The woman that said that I wasn’t even man enough to make a normal child. Then we went to the MVA to aquire a special parking permit in front of my house, so we can have parking right out in front. We have fought people over this issue. On occasion we have some assclown that decides to park there, but unbeknown to them it is a 500.00 fine to park there. I have actually had words with several neighbors because they parked there. I had one neighbor across from me had someone visiting from Florida parked there. We pull up it is pouring down raining and someone is parked in our spot. I didn’t know who it was. I layed on my horn, hoping someone would come out to investigate and perhaps know who the vehicle belonged to, but to no avail, so I called the police and the officer comes to write a ticket for the vehicle. The lady across the street from me pulls up and ask me what was the problem, I told her that someone parked in my spot. She then says to me, “Do you want me to go get him and make him move?” I replied that I had already called the police. The officer hadn’t arrived as of yet, but she then replies, “Well that is unneccesary!” I did’t know she knew this person, but she began to cuss me out like it was my fault that this ass hat parked in my spot! My daughter began to yell at her, and began to threaten her. That is when the clown that had parked in my spot finally came out of her house and walked across the street. He asked me what was the problem and I explained that I have a permit for the parking space and that it is a 500.00 fine to park there. He said he didn’t even see the two great big signs that read “PERMIT PARKING ONLY”, which also has a number that is affixed to my driver’s side windshield. I replied, “Can you read?” Which he took offense with me. That is when the police officer pulled up. I explained to the officer what transpired. I told the officer if he moves I am not worried about if he gives him a ticket. I just want my parking space so I could get Dylan out of the car and into the house. This is the kind of issues we have had to deal with. One time some Jack hole had parked there and I called the police. The officer that came actually asked me what I expected him to do about it. I informed him that they usually write a ticket for the violators. He told me that he wasn’t comfortable doing that and to park somewhere else. I promptly took his name and badge number and told him that I was calling for another officer. He was a real smart ass. He said, “Go right ahead, they will just send me back and I am not writing a ticket, I don’t have to.” Which really pissed me off. The woman who parked there came walking down the street and the officer asked if the car was hers and she said yes. He said, well you can’t park here. She said “Oh I am sorry, I didn’t know that?” She got in and drove off. Then the officer says to me, “all taken care of” Like he did something. I quickly replied, “Yes, but no thanks to you.” I will be in touch with your supervisor.” I called his supervisor the next day and was assured that I wouldn’t have another issue with an officer writing a ticket, because that is his job.

These are the things we have to deal with. I also explained the stares people give to Dylan. Like he is some kind of freak. He yells out, because he cannot speak. We expect children to stare, but then we have grown ass people rudely stare. We hear them whisper and occasionally laugh. One time, me, Dylan, Terri and my mom was in Wal-Mart and I was walking ahead of them. Terri was pushing Dylan in his chair and Dylan began to scream, it is an impulsive sensory thing that he does. Most people pay no mind to him, because most people no better, but as they’re walking along, Dylan is screaming. I was up ahead, because I was checking on something. Dylan let out an ear piercing squeal there was a lady directly in front of me she looked up and said, “Geese, shut that kid up!” I said, “Excuse me?” and she laughed, “I said, shut that kid up!” I was angry and I yelled at the woman, “What in the hell is wrong with you lady? That’s my child you’re talking about and he is Autistic!” She turned horribly red, “Oh I am so sorry, I didn’t know? I work with kids like him.” She replied. “I sure hope the hell not!” I said furiously “Because I sure feel sorry for them! You intensive asshole!” I added. By then Terri had overheard what was going on and she immediately reamed the woman out as well. Suddenly my 65 year old mother came careening down the aisle with a cart, “What did that bitch say about my grandson!” she yelled. I immediately calmed her down we got what we came to get and quickly left the store without further incident.

These are the things that saddens me. I often wonder is how Dylan will be treated when we’re no longer around and sometimes I feel hopeless; however, there remains a glimmer of hope. We were out at a mall yesterday and me and Dylan sat on a bench waiting for Terri to finish in Torrid. This little boy escaped from his mother and came running over to wear we were sitting. I was on the bench, but Dylan was in his wheelchair. The little boy bean to rub Dylan’s hand and say hi. His mom came over and said, “Did you tell the little boy hi?” they both smiled at us the young woman said hi to me and asked me how I was doing? I told her good thanks. She smiled and walked away. It is these type of things that gives me hope. We have people hating one another because of race issues. We have people hating people because of religion and politics. It seems as if the world is seriously going to hell and we are all on a one way dead end road towards doomsday, but there is yet hope. The little boy that came up to Dylan was probably about three-years old and an African American. He didn’t notice Dylan’s skin color, or his disability, he noticed that Dylan was a kid, just like him. That is truly love and that’s the kind of love that produces hope. (To be continued.)

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.)

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.)

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

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