This is for everyone who is disapointed that I haven't posted anything for awhile. Obviously we have been a LITTLE busy in the last month or so.
RJ has been having a lot of problems. It started in early May, he was having these "episodes" of feeling really sick, dizziness, loss of vision and hearing, and like a muscle tighness in his whole upper body. These episodes would last 2-3 minutes and then pass and he would be very tired afterwards. They started out every couple of days, then progressed to everyday and then to a couple of times a day. He went to his Dr. and he thought maybe he was having the start of migranes so he prescribed medication for them. A few days later I took him to the E.R here in Boone because he had a "episode" that lasted longer and kind of passed out at work. His boss called me and I went and got him. After a lot of tests everything came back normal and they sent him home. The next morning he had a grand mall seizure on Friday July 1st. He spent a night in the hospital and they started him on Dilantin for his "episodes" which we discovered were "Petite Mall Seizures". He was very tired the next week and we ended up back in the E.R in Ames because he had 3 of theses petite mall seizures before noon on Friday the 8th. They discovered his Dilantin level was almost undetectable and up'd his dosage and gave him a "loading dose" of 700 mg in the E.R. This was why he was still having seizures because his medication level was too low. Sooo.... two days later in the evening of Sunday the 10th he was still complaining of a major headache. He had a headache all weekend long and nothing was helping it, so I got him some Excederin. He took it and about 20 minutes later he was broke out in a slight "heat rash" or so we thought. Not thinking that much of it, we went to bed only to wake up in the morning to the rash being a lot more red and his face was pretty swollen. We ended up back in the E.R. that morning (Monday) to discover that he had a drug reaction to the dilantin. They said it was one of the worst reactions they have ever seen there with Dilantin. They quickly got him on steroids and some other meds to help with the rash, and switched his seizure medication to Keprah.
* In the meantime while all of this is going on, we were trying to get him into a neurologist and everywhere we called nobody could see him until August 11th and that was in Des Moines.*
The E.R. Dr. in Ames called in a few favors and got us an appointment for Friday July 15th with Dr. Acosta in Ames. The next 4 days were MISERABLE for RJ. The rash spread to his whole body and he was so itchy. Nothing relieved his pain or the itch. The rash turned from small spots all over to one major mass that looked like a very bad sunburn. He was burning up to the touch but he was shivering because he said he was so cold. I hope he never has to go through that again. He had a lot of sleepless days.
We went to see Dr. Acosta and after much review and testing he determined that RJ has some Temporal Lobe Damage that was caused from his Car Accident in February. He said that it can take months for symptoms to occur. He believes that with the right medication over the next couple of years, they can quite down the damage and it may heal itself. The medication should stop the seizures and allow it to heal.
That is where we are now. Everyday is something new and RJ is doing ok. He is still having some "petite mall seizures" but they said he might until they can "tweak" his medication just right. It is a very frustrating for us both. Every now and then he can't remember what he is doing, or it's hard to focus on things, and every now and then he mixes up his words. Hopefully the medication will help all of this. Today is the first day that he hasn't felt "dizzy" so that is good. I have a lot more to add to this, but for now that is what I can write! Pictures will follow....
Oh and to top it all off he has lost his liscense for the next 6 months due to his grand mall seizure, which in turn he has been put on short term disability for the next 6 months until he gets his liscense back and gets his medication straightend out so that he isn't having seizures.. Great...
