Daily News!!

By Terri King

Sorry, I haven’t written anything for a while.I have been quite busy the past couple of weeks with my daughters graduation party. Thank God that is finally over with, It turned to be a nice time even with all the rain we had.It was good see everyone, I hope they enjoyed themselves. Dylan has been busy as well with all his mischief he gets into, my husband was in the bathroom and Dylan decided he was going to have some fun so he tore up some of my husbands homework and broke the lens out of his glasses and went back in the living room and sat there and waited for him to come out the bathroom to see what he would do and look what I did. I have pictures of the mess. Dylan seizures haven’t been too bad lately I’m happy about that. Summer school starts next week for him. I wonder how he will feel about.

The homework he tore up
The homework he tore up 
The Glasses
The Glasses
Him being content with what he did.
Him being content with what he did.

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.)

The shower!!

Here is  few pictures of the shower or something like we would like to get eventually for Dylan. This would be to make it a little easier to give Dylan a shower and for us to have better control of him when he does take a shower. Due to his seizures.

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Daily News!!!

By Terri King

Dylan is still having a lot of seizures.I think it might have something to do with the weather because it has been so hot outside. He has been enjoying his time off playing with his toys and just chilling.His appetite is back he sure is one hungry little guy. Here is a picture of him eating one of his favorites, a tuna sandwich.

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Daily News!!!

By Terri King

Dylan slept for seventeen hours after those damn seizures yesterday. He got up at five thirty and has been going strong ever since then. He has his toys all over the place. My poor little man slept right through father’s day. He had a seizure a few minutes ago and now he is just sitting in the living room. I hope it’s not a repeat of yesterday. I hate when the seizures rob him of his energy, it’s bad enough the medication he takes does the same thing.  He is still in his pajamas. Here are a couple of pictures of him and his mess.

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Daily news!!

By

Terri King

Dylan had a rough night he had a lot of seizures. He was having the grand mal seizures. So now he has been sleeping because the monsters wore him out. I hate them damn things I wish the doctors could figure a way to control the damn things so he could do some of the things he liked to do before seizures. Some days the seizures drain him of his energy he can barely walk and all he wants to do is sleep.

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