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    Wife to Bryce and mother of three children, LJ, Noah, and Sofia. Living in a very "special" world of special needs. LJ has cerebral palsy, myoclonic seizures, developmental delays, and cortical visual impairment. This is our yellow brick road.
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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.


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