Superman finally got his new wheelchair yesterday. I am happy with it because he can be more comfortable now. Superman would like to say Happy Birthday to his big brother Dacota.
My Superman is growing up up to fast. I can’t believe how much he has changed. He is so handsome.
These are pictures of Superman from his swallow study!
They took him off the ventilator yesterday, it was hard to watch him at first because he was choking and gagging a lot. He is doing much better today. Physical therapy came today and had him sitting up on the side of the bed first time in 21 days, he was getting tired from it. So he is resting now. He did have a fever overnight. So far today he hasn’t had fever. His blood pressure was a little low overnight. Baby steps but he his headed in the right direction. The chest Xray shows some improvement on in his lungs, but he still has ways to go. He has been doing a lot of wheezing today. I have been suctioning him a lot today, it is bring a lot of the junk up from his chest. He was happy to see you balls today but he didn’t grab for them yet. I think the chest tube is to painful for him to reach.
By Jeff King
It has been about a month since I last wrote on the blog. I have been busy working and also with college. I have also been looking into getting CBD oil legalized here in Maryland. One of my older son’s Nicholas most recently introduced me to a young man who is an advocate for NORML in Maryland. His name is Chris Hartsell and he has asked Terri and I to go down to Annapolis Maryland to sit in on a legislation session concerning the legalization of medical marijuana, but more importantly the CBD oil that we are so desperately trying to get for Dylan. I informed him that I would definitely be interested in this, and that I would like to bring Dylan as well and perhaps share our story with the Governor, and the legislative committee concerning this matter. We definitely have a story to tell and we want these lawmakers to hear it.
Although we are not currently member of NORML and after having hearing some of the chapters leaders testify on video in Annapolis, I actually see why many of them are not taken seriously; however, I intend to change that. If I am asked to testify, I believe I bring a personal and heart-felt story to the message of why this plant should be legalized, and made available to patients that are suffering from different ailments. As I have mentioned before, I do not use marijuana, nor do I even drink alcohol. I am not condemning anyone for what they may do though.
I have personally witnessed a few people who were dying of cancer, and even one person, who was very near to me die of AIDS. These people were in constant pain and I watched as these diseases ate away at their bodies and left them former shells of themselves. The friend who died of AIDS couldn’t eat, or do anything, because he was in such miserable pain. He began to smoke marijuana for the last six months of his life. Through this plant, he was able to get back some normalcy to his life. He could cope better with the pain, he also could eat, because it helped him with the nausea that he would get from his AIDS meds. Ultimately, he still died, but at least he lived his last days with some sort of peace.
I have researched many children and adults who have suffered from epilepsy and other ailments. The medicines that are prescribed to them is nothing more than legal poisons that have vicious and debilitating side effects. For example Dylan has to take two different medications to try to control his seizures, yet even these two medicines combined together working in concert with his VNS still doesn’t keep these vampires at bay. I call them vampires, because these seizures, and the medications used to combat them have robbed Dylan of his quality of life. The side effects for Keppra in children include sleepiness, accidental injury, hostility, nervousness, and weakness and even suicidal thoughts! Wow so my 12 year old son may or may not have thoughts of injuring, or killing himself? That is frightening! The side effects of Vimpat which by the way shouldn’t even be prescribed to any patient under 17 years of age, but because Dylan has intractable epilepsy, where no medication seems to work, he was prescribed this medication. The side effects include dizziness, spinning sensation, drowsiness, blurred/double vision, nausea, vomiting, tiredness, loss of balance or coordination, difficulty walking, shakiness (tremor), headache, or memory problems. I must say, he has lost a lot of his cognitive abilities, and there are days that he cannot walk at all. We witness the tremors, so this is a great medication for people! Now I get to CBD oil, AKA, Charlotte’s Web. I have researched hundreds of cases of children and adults who suffered from uncontrollable seizures, such as Dylan has. This oil has worked miracles in all the cases I have read about. I have talked to some of the parents via email and most of them said, that they’re not even sure that their child would be alive today if it wasn’t for this oil. “CBD oil or Realm Oil) for intractable seizures in children with Dravet Syndrome. These children can suffer 40 or more seizures per day; the seizures are often prolonged in length. The oil is made a from a special strain of marijuana called “Charlotte’s Web” that has extremely low levels of tetrahydrocannabinol (THC), the psychoactive ingredient in marijuana that leads to the “high”. However, the strain has elevated levels of cannabidiol, or CBD, a non-psychoactive component that has been shown to have a number of therapeutic benefits, including those that limit seizure activity. The oil is taken in an oral liquid form, not smoked like traditional marijuana. News media has showcased several families from states that do not allow the CBD oil. These families have moved to Colorado from their home states to access the oil legally for their children who suffer from the debilitating seizures”. (http://www.drugs.com/illicit/cannabis.html). I find it hard to believe that the Governor of Maryland, who by the way I voted for, who also has cancer hasn’t considered introducing this bill into legislation. Just today, I was sent an email from my friend Chris Hartsell informing me that the Anne Arundel County Executive that I also voted for has said that he would be against any legalization of medical marijuana, or any of it derivative’s. This fool doesn’t even realize how this could help Dylan and children like him. Hell this could help thousands of ill children as well as adults. These politicians would rather get behind big pharmacy and liquor than consider really helping their contingents that he promised to help for their vote. His banner reads, “People Before Politics” What a crock of BS. Steve! I say put your money where your mouth is and do the right thing for the people of the community. By being against this you are aligning yourself with the corporate clowns, who want to continue to push their poison on the people regardless of the harm that it is doing.
Before Dylan began to take this medication, he could run and play, he could talk and sing. He was a lively and charming little boy. Now he doesn’t talk. He hardly walks. His singing is replaced by unintelligible babble. We watched as our little boy slowly and quietly faded away, and was slowly replaced by a shadow of his former self! I ask you this, “What father among you, if his son asks for a fish, will give him a serpent instead?” Matthew 7:10. My son can no longer ask me for a drink, or tell me he is hungry! The poison that he has had to ingest for the past 5 years has seen to that.
What parent would do whatever it takes to give their child a better quality of life? I know that me personally, I would tread through the flames of hell itself, if I thought I could find a cure for Dylan. There would be no mountain too high, nor a sea, or dessert to wide to cross. There’s nothing that I wouldn’t do for Dylan. This is just too important.
I am asking my friends, family, and acquaintances to please, please write, share and tell others about this important issue! I implore you! Thank you!
If you are in Maryland and can write the Governor on Dylan’s behalf, Terri and I would sure appreciate it. His email is http://governor.maryland.gov/mail/default.asp
If you’re a resident of Anne Arundel county, I am asking you to send Steve Schuh an email on Dylan’s behalf that email is Steven Schuh at email@example.com . We appreciate it.
These pics are before the Seizures and after the seizures
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.)