A better plan of action

We went to the neurologist today. And we saw the neurologist himself, Dr Watkins, instead of the PA that was giving us so much trouble. Dr Watkins was wonderful. He was barely all the way in the door when he was asking questions and investigating. He examined Selo chart, including all the history that was in there- the blood work from now back to when he first started on the meds a year and a half ago, the MRI and EKG and everything else from the other night at the ER, comments we've given in each visit. Dr Watkins listened to what we had to say, he let us voice our concerns, and he came up with a plan of action that is not only safe, but also agreeable to us.

Selo will be increasing his new meds a little quicker, until he is up to the full dose that Dr Watkins would like him to be at. Then once Selo is stable on those, and has no negative side effects, he will start decreasing the dilantin more. He will reduce by 100mgs at a time, which will get him off of it much faster. Also, he will continue to have the regular blood tests and neurology appointments he's been having, only this time they will be with Dr Watkins instead of the PA. Dr Watkins even lowered his dilantin slightly right now, because the level in Selo's blood showed that he obviously did not need that much to stay safe, and it was causing such a terrible problem.

We are much happier with this plan. Instead of a four month transition, this will be an 8 week transition. This means that in a much shorter amount of time, Selo will no longer have to deal with the drastically negative side effects of dilantin. He will be on a better medicine, that has less overall side effects, in a faster amount of time. And all the while it will be done safely and under the care of a doctor that cares. This plan is much more detailed, and Dr Watkins made sure we understood it completely and why he chose this plan of action. We felt like he wanted to work together to accomplish this, and we appreciated being included.

I was also impressed with the way Dr Watkins listened to our concerns about the PA, and how we felt so uncomfortable with the lack of caring and the dismissive approach he had with us. Dr Watkins ensured us that we may see him from now on, and will not need to see the PA again. We were appreciative that he was concerned enough about his patient to extend that level of service and caring to us.

Another visit to the Emergency Room

First of all, I want to say that I respect doctors, and their medical knowledge. I respect the years they spent learning and specializing, and the fact that - medically- they know significantly more than I do.

My husband was in the ER Saturday night. We have been in a battle with the PA at his neurologist's office because we felt his meds were too high. The first time we went in, we weren't sure exactly what was wrong, and the PA increased the meds. We weren't happy, but he knows what he's doing, right? The second time we went in, we told the PA we felt the problem was that he was over-medicated and wanted Selo to be taken off the dilantin. The PA started him on a different medication, and said once the levels were stable with that one he would start slowly weaning Selo off the dilantin (a process he said would take a minimum of four months). Again, we weren't happy, but at least there was a goal this time.

Last weekend, things got so bad, we went to the ER. Selo was non-responsive, slurring his words, had blurry vision, dizzy, couldn't walk from one room to the other by himself, and was having trouble breathing that wasn't corrected by his inhaler. After 7 hours, an MRI, EKG, and lots of blood work, they found that the dilantin level in his blood was so high it was toxic. He was being over dosed with his seizure medicine.

The ER doctor- who DID listen to me and take me seriously- told Selo (well, told me, since Selo was out of it and I keep track of his meds as closely as he does) to have him skip Sunday's dose, and call the dr on Monday to find out what to do from there. Yesterday, Selo woke up feeling better, and was showing improvements.

This morning, I called the neurologist's office. The receptionist said she couldn't get the neurologist on the phone, couldn't talk to him, and couldn't set an appt with him. The office manager was out of the office, so she couldn't get permission to do anything. After her very unhelpful speech about her NOT doing anything, I pretty much gave her all my anger and frustrations. She said that either she or someone else would call me back by four o'clock with answers to my questions- all of them.

Thankfully, I did receive a call. Selo is to not take anything today, take a partial dose tomorrow, and we have an appt with the neurologist (not the PA, but the actual neurologist) tomorrow at four o'clock. And the person that called me back was knowledgeable, kind, and answered every question I had.

Now, like I said before, I respect the PA's medical knowledge. I respect the fact that he went to school, studied and learned, and is probably good at what he does. However, when we have gone in there several times telling him something is wrong, and then still end up in the ER for the very thing that he was told was wrong, I am NOT a happy wife. I am furious. This is my husband's health. And not just a bump or a booboo. This is serious stuff. I am ticked off that we had to go to the ER before getting help, when we had three appointments in two months to get help for this. And I'm ticked that my husband has to live this way because the PA decided not to take us seriously and make some changes. I am hoping that tomorrow when we see the neurologist he will be more sensitive and know that although I don't know the medical ins and outs of the brain and seizures, I do know my husband and I know when something is wrong. This is the last chance this office has. If we don't feel comfortable walking out tomorrow, we will find a new neurologist.

Selo's Dr Appt

It was bitter sweet today.

He is doing well on the meds. Since he has been stable on them for three months, he can have his license back. YAY!!! We got the paperwork, and next week he should have it back. So excited. He can drive again!

The bad news, is he may have to have surgery. He has a lump on the back of his neck. He will have an ultra-sound on it this coming Tuesday, and then decide a plan of action from there. We are a little nervous about the results.

PS He has a GI appt tomorrow.

A Bad Night

Last night, after a very long and highly emotional phone conversation with his ex wife, Selo medical health went out the window again. He was vomiting and coughing up something from deep down. And he had a seizure right there on the kitchen floor. I had to wake his mom up to get help, and it took us quite a while to bring him back to consciousness. It was so scary.

He has two doctor appts next week. One with the neurologist and the other with his stomach doctor. He's been consistent with his meds- both of them- and was doing better. Up until last night. I'm pretty sure what happened last night was caused because of his emotional state, so I am hoping he will be okay. But you can believe I am paying very close attention to every cough and twitch he makes today.

Another Seizure

He had another one. A second one in one day. This one worse than the last.

Tomorrow he should be making a visit to his doctor. We are all eager to find out what's going on and what's causing him to have so many seizures so frequently.

He Had A Seizure This Morning

My alarm went off this morning to get ready for church. I realized it was daylight savings and wondered if my the time was correct, or if I was an hour late. I went upstairs to check the time. My MIL was almost panicking. She ran out of her bedroom, and was close to tears. "He just started shaking and having a seizure and I didn't know what to do. I tried to wake Sarah up because she is a nurse, but she is still out from last night. I can't get him to wake up or talk to me or anything. I don't know what to do." After getting her calmed down a bit, we went back into her bedroom and started trying to bring him back. He would open his eyes for a few seconds, but wouldn't sit up or respond to us. I knew from all the research I had done that after a seizure they can be disoriented for as much as thirty minutes or so. I wasn't too concerned, but we both kept a close eye on him. About every ten minutes we would go in, try to wake him, and question him. After thirty minutes he sat up in bed for a few seconds and started responding to our questions. The answers were wrong (What's your favorite color? Baby's breath. How old are you? Almost 20. Who is the president? Lots of them.), but he was responding. I felt a little uncomfortable that it was taking SO LONG for him to come out, but we just kept it up. After almost an hour, he was coherent enough to look directly at us, sit up and move around himself, and answer our questions a little better (What's your mom's name? Um, well, um, Sarah. Where are you? Well, last night it was xCityNamex. What month is it? Oh, the month, I don't know. I have to think about it.)It was taking him a while to answer, and sometimes he couldn't get it. But his words were clearer, his eyes were clearer and more focused, and we could tell he was getting back to normal. Once I was sure he was okay and Susan was feeling better, I went back downstairs.

I wrapped my arms around my husband, and held him tight. Healthy or sick, I am so glad to have him.

Seizures: A quick guide

I found this info on Web MD (type in seizure)

No matter what caused the seizure, you can take steps to protect a person during a seizure and to get help after the seizure.

• During a seizure:
  • Protect the person from injury. If possible, keep the person from falling. Try to move furniture or other objects that might cause injury during the seizure.
  • Do not force anything, including your fingers, into the person's mouth. This may cause injuries such as chipped teeth or a fractured jaw. You also could get bitten.
  • Do not try to hold down or move the person.
  • Try to stay calm.
  • Pay close attention to what the person is doing so that you can describe the seizure to rescue personnel or doctors.
  • Time the length of the seizure, if possible.
  • 
    
• After a seizure:
  • Check the person for injuries.
  • Turn the person onto his or her side when the seizure ends and he or she is more relaxed.
  • If the person is having trouble breathing, use your finger to gently clear the mouth of any vomit or saliva.
  • Loosen tight clothing around the person's neck and waist.
  • Provide a safe area where the person can rest.
  • Do not give the person anything to eat or drink until he or she is fully awake and alert.
  • Stay with the person until he or she is awake and familiar with the surroundings. Most people will be sleepy or confused after a seizure.

Selo's Neurologist Appointment

Well we had his appt with the Neurologist today. (I'm getting good at spelling that word *sigh*) The doctor was very thorough, and answered all of our questions. We had tons. And tons. Anyway, here's a basic rundown of things. And since it is still all a jumble inside my head, it won't be any more organized when I write it down.

He has to go on medication. The doctor said he will probably be on it for the rest of his life.

He is not allowed to drive. At all.

It is not hereditary, but our children have a higher risk of having seizures.

He has to have more tests done.

The doctor explained what happens inside the brain during a seizure, and how to handle it when a person has one.

Well, those are the basics of it. I am going to keep a "journal" if you will of all the details. So far, I have kept everything in my head, but I'll never be able to keep up on that. So I am going to put all the details and dates and everything in my protected blog, so I can keep it- and keep it safe.

I will be doing lots and lots and lots of research in the next two days. I will probably be posting some info here, and I would love to hear anything you guys have to say about it. Any sites you recommend, if you have dealt with this, if you know about meds, if you have done any research yourself and happen to know what I should be learning.

(And if you would like access to my protected blog so you can read more, just let me know.)