Jessie's doctor appointment

[susiestar]

This post is JUST about the neuro visit.

As I said, I really like the new doctor. We thought we were getting the woman in the practice, but she had a weekend emergency with a patient so we got her partner. He is great.

He took a VERY careful history. Did a far more thorough neurological exam than I have ever seen done. She did have the shaking thing happen during the exam, so he saw it first hand.

There is NO way it could be a seizure. Not just based on the EEG, but also because she is walking and talking and conscious during the episodes.

He then asked why we were on keppra and what we tried before that. According to this neuro there is only one study he knows of where topomax, the medication we tried before keppra, helped absence epilepsy and it was not very effective.

There are no studies he is aware of that show keppra helping the epilepsy. Since there ARE medications that are proven to help, it seems strange to stick with these 2 medications that do not have any research to prove they work.

He ordered 6 panels of lab work. Not 6 tests, 6 panels. He covered just about everything, including a rheumatoid panel. We have long since seen signs that she has some rheumatoid problems. Since they are so strong in the family it seems dumb to rule that no doctor before this would order these tests.

He has not ever seen anything like this. But he is NOT giving up.

He is frustrated that our pediatrician refuses to do anything to help us after we saw the neuro. Not even medication refills, which he thinks she could do with the info he has. She will treat sinus problems, the flu, etc... Even with a letter or conversation with him she wants nothing to do with this and will not even refill a prescription at his request.

So he wrote her rx's for 3 medications. We are staying on the keppra for now. he added lyrica to help with the pain, and continued her soma for the msuscle spasms.

In addition to the lab work he wants an MRI with sedation. It will be of her brain, of course, and should let us know if there are any problems in the brain itself. The sedation is because she couldn't lay still for the test with the shaking.

We go back in 6 weeks.

So that is the in-depth update of the doctor appointment. Thanks to ALL of you for helping us get this far.

 

[Hound dog]

OH Susie!! I think you found one of those docs I was telling you about!! You know, like the nuero who had me crying with relief and the one I'd asked to kiss his feet?

Thank goodness! It's about time a doctor sat up and took notice. This guy sounds like he really cares and is going to do what he can to find out what this is.

If I had a pediatrician doctor like yours, I'd dump her. Actually we had a fam doctor with that attitude, and I dumped her. lol Usually it stems from being afraid of being sued for making a mistake outside of her area of comfortable expertise. I prefer a fam/pediatrician doctor with quite a bit more condfidence than that. Plus it can handicapp you when you need medications filled ect.

Continuing to pray that this guy can finally solve this mystery once and for all.

Hugs

 

[Star*]

yes, yES, YES!!!!!! Prayers getting answered! Finally out of the dim and into the light. (phew/whew)

 

[house of cards]

It sounds very positive, I hope you get answers that let's Jessie live a much better life.

 

[susiestar]

Jess and I have been talking about switching docs. The only family practice in town is in the overall practice the pediatrician is in. They refuse to take pediatric patients because it steps on toes. I do respect a pediatrician who knows her limits, but not one that will not even speak to the specialist and help rx medications or whatever the specialist asks.

From now on EVERY neuro problem will be treated with "call your neuro". Not a good idea.

We have ONE other practice that does peds in town. I am going to call them for a new patient appointment after I ask some questions about them.

They have a doctor who's last name is Schrek. Yes, he is Dr. Schrek. You can bet he uses it with the kids, LOL. When he has sponsored a community even he has really played it up. I like a doctor with a sense of humor!

While i really really really wanted this guy to say "Here. take this set of prescriptions and everything will be all better." I knew it wasn't going to be that way. So, she doesn't have much to help with the pain, but she will have something.

Thanks for all the help and advice on this one.

 

[gcvmom]

I'm so glad you found this practice... it sure sounds like you are on the right path to eventually get some answers. It may not happen tomorrow, or even next week, but just the thoroughness of the exam and the tests he's ordering tell me that he is leaving no stone unturned. And if HE can't figure it out, no doubt he will consult with someone who can. Happy for you!