The Good Doctor

We met with the new neurologist last Tuesday. Our appointment was at 11 and we didn’t leave until about 1-1:30.

First, he explained how he did things and why he would ask us the same question we answered on the sheet before he came in.

Then he went over the CT scans and MRIs. The damage was pretty severe but at least he was telling us in a not so matter-of-fact way.

Then, he evaluated LJ.

If I had done an exam on LJ and then looked at his CT scan, I would never have put the two together.

Meaning, he was impressed. He was impressed by how much LJ could do and demonstrate to him. He was impressed with my dedication to his therapy. He compared other children with similar circumstances to LJ, who’s MRI looked much better but were physically (and mentally) worse off.

We then moved on to the EEG. He explained why the other doctor had suggested medication. He said the EEG was abnormal, but considering the damage and history, that was to be expected. He said the EEG was consistent with similar patients that would have seizures in the future. He advised that there was a very good chance LJ would have seizures in the future.

We talked about Phenobarbital. He told us that it was a great drug, that it’s been around for a long time, but that he didn’t use it. He said that when patients come to him on it, he tries to switch them. The reason for this is that it’s side affects greatly interferes with development (hmm… didn’t I talk about this?).

He talked about Kepra (the other med the old Doc had changed his mind to) and said it would probably make LJ very grumpy. Which would make him difficult to work with. And then we would be calling him up asking him what the heck we were treating LJ for if we didn’t even think he was having seizures.

I agreed 100%.

He said that he wouldn’t advise putting LJ on medication until he actually had a seizure. That the first 5 years are crucial to development and the affects of the medication weren’t worth it, if he wasn’t having seizures. Which, he doubts he is having them.

He did prescribe a medication for if he does have a seizure for 3 minutes that we could use to stabilize him.

We discussed seizures and it’s affects. He told us that there wasn’t scientific proof that seizures caused damage… until they last 30 minutes to an hour. Which is why they tell you to call an ambulance after 5 minutes; it gives them time to get there, stabilize the patient and get them to a hospital.

All in all, I loved this doctor. He took extra time with us, making sure we understood everything he said (you know how those doctors can use big words, heh) and made sure we had our questions answered, although there weren’t many left since he had covered almost everything. I was impressed with his patience and thoroughness and the fact that he could explain why he wasn’t going to treat LJ.

But mostly, I was happy that LJ proved yet another doctor, wrong. He is definitely our son.

In the Mood…

I know, I know, I said I would be working on my vacation posts, but I have a good exscuse! I’m waiting for the pics from the first and second day to come in. For some reason I decided to take the rest of the vacation on my digital camera but the first two days, I used the “old fashion” kind.

This week alone, I’ve had 4 appointments; Beth, Kim, Amy, and the pre-op appointment for LJ’s surgery. Crazy, as usual.

It was great seeing Kim. She is so sweet and understanding. Sometimes, she’s MY therapist too. She really gets that parent’s of special needs kids often need support themselves.

And there it is. I’ve come to terms with the fact that my son has special needs. I have, in no way, accepted it, but I’m starting to be okay with it. I still don’t think it’s fair, I still cry about it sometimes, but if anything, it’s made me more determined. This acceptance has led to many things, including an idea of developing a web site for special need’s parents. Basically, it would be a blog but somewhere parents can come and know they aren’t alone. I think it’s something I’d work on once I started taking classes for my web design certification. More on that, later.

Amy is nice. She adjusted her schedule so we see her Thursday afternoons, which is perfect. We’ve talked about adding on a physical therapist to his routine, but have decided to wait until after surgery. One step at a time.

LJ’s pre-op appointment went well. We ended up getting a general anesthsia appointment. I haven’t really talked about that much here, but it will come in his birth story which I’m working on as well. I got stuck because I couldn’t remember certain details that I wasn’t there for, so I’m going to ask Louie for help. I thought about asking him to guest post, but some things are easier for me to discuss then him.

My friend’s dad, that was in a coma, passed away. Most of his brain was damaged during the two strokes he had. I’ll always remember the things he did for me. He did a lot of things I wouldn’t necessarily approve of, but he did a lot more things with us then some dads do.

My BFF’s dad had a heart attack earlier this week. It was a mild heart attack, but most of his arteries are clogged. He is having quadruple bi-pass surgery today. They also found out he has Emphysema, but if he quits now, they expect him to be fine. He plans to, along with changing his lifestyle.

I’ve been praying for both their families.

But to end on a lighter note, I just noticed that for the entire day, including LJ’s pre-op appointment, my pants have been on backwards.

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