They took him off pentibarital drip to give his brain a rest at 3:00 am. His eeg is showing small spikes of brain activity. They say some of the spikes are still showing seizures. They raised his Onfi to 7.5 ml twice a day.We talked about the Epidiolex. They said we would have to talk about this at his neurology appointment on November 13. Please continue to pray for Superman. Thanks for all the prayers and positive thoughts. 💜
They have in a sedative coma to keep the seizures under control. They also told me it is to give his brain a rest. Remember he came to hospital in sub clinical status. The plan for today he may have an MRI not sure about that yet. I will let everyone know more later. Thanks for all the prayers and positive vibes.💜💜
Superman has to be put on a ventilator to help him breathe now. He is having hard time breathing because of the seizures medications he has been given to control them. They are placing a central line and al line for needed medication.
He did not have good night. He seized all night in his sleep. He is so many different medications right now. Hopefully they start to work on him. So they don’t have to put him on a ventilator.
He has been having a rough morning. The seizures are not leaving him alone today. He was up all night, which keep me up too. Continued prayers and well wishes please for him to come home we are on day 9 being in the hospital.
The surgery went well. By the time got to go back to recovery my little Superman was awake. He was ready to go home after he drank his apple juice. Now time to go home and rest.
Dylan got the superman hat for Christmas and he got the new Maraca. It is hard to buy stuff for Dylan because he has different needs then most children his age. He likes to spin stuff, like the old house phone he loves play with.
So yesterday Superman went to the hospital from school because they said he had a seizure that lasted longer then 5 minutes. They also gave him his rescue meds that’s another reason why he was taken to the hospital so he could be monitored. The hospital that he was taken to I’m not a fan of at all because of past issue’s. I have to say they gave him outstounding care yesterday.
Taken while at the hospital.
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!
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.)
thetruesuperman 