Best Neuro Appointment Ever

On Thursday we found ourselves back at the neurologist. I used to dread doctor’s appointments–every time I went there was some new thing that was WRONG and BAD and NEEDED TO BE FIXED RIGHT THIS SECOND. Ugh. It was like a report card with all F’s. Things are more stable now–appointments don’t tend to end in a surgery recommendation or a life-altering diagnosis-but I still look forward to them with the same level of excitement as someone about to get a mammogram.

This was, hands down, the best visit we’ve ever had at the neurologist’s office.

I told her all about the school nurse’s concerns about possible sleep seizures. Doc thought it was unlikely.

I told her about concerns the nurse had a bout his shaking eyes. Doc doesn’t think it’s a seizure.

I told her the nurse thought we might need a 24 hr eeg. Doc disagrees.

I asked her about when Charlie giggles in his sleep, could that be a seizure? She thought not.

She acknowledged that there’s always the possibility that Charlie has the occasional seizure that we don’t pick up on, but as long as he continues to progress and develop like he is, she thinks we should continue to do what we’re doing. It was the most laid back I’ve ever seen her with regards to Charlie. I even had to remind her that we needed an EEG.

She marveled at his vision. Marveled. This was a woman who wasn’t convinced he could see at all.

She assured me that Charlie’s issues with over-heating are definitely related to brain injury. She said it’s extremely common and assured me that I was not being overly-crazy.

Boy fingerpainting

Speaking of crazy, I know I’ve told y’all about how Charlie’s vaccinations are all messed up and how we are now proceeding very slowly with getting him vaccinated against some of the biggies.  Next on my list was the DTaP, but several of my amazing readers told me that the D part is contra-indicated for some cases of Epilepsy, so I held off until I could talk to her about it. You know what she said? She said, “I’d risk as little as possible–you need the tetanus.” If you’ve ever tried to talk to your doctor about alternatives, you know how rare and wonderful that response is. She actually recognizes the work and effort we’ve put in and how far we’ve come with Charlie. She wants to protect what we’ve accomplished. I’m like verklempt over here or something.

Now I just have to find someone who offers a plain tetanus shot to three-year-olds. I called our regular pediatrician’s office and her nurse called me back to tell me, “uhhhh, we don’t offer that. Dr. So and So (not our doc–just some other doc in the office)  says it should be fine as long as the epilepsy is controlled.”  Ummmm, forgive me if I don’t give a flip what some regular, not-even-our-freakin doctor has to say about my decision to rigorously protect my child’s brain. Especially since I know he didn’t pull out a file or anything. Gah. So I’ll have to go elsewhere–and probably pay out of pocket–but that’s fine.

We wrapped things up with a prescription for some private PT. Charlie is so into walking right now we’re going to see if we can get some extra time in on that. I also got all my paperwork signed so I can get a handicap license plate. That’s where we’re supposed to park for school, so we need to get one.

So, yeah, great visit. Still have to get past the EEG, but hopefully that will be fine too. In the mean time I’m just going to be happy about where we are right now.

Child fingerpainting

Pretty sure he's getting paint in his mouth here.

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  1. Great report! Stick to your guns and get what you need for Charlie! I <3 your neuro, wish we had one like her in Maine!

  2. “Charlie is so into walking right now ” W00T! Photos/video, please!

    • I can’t video tape it. You would be horrified to hear that we are still missing a piece off our gait trainer and so Charlie won’t use it. Basically, every night, I hold his hands and Dad helps his legs through the motion of walking. He loves it, though.

  3. MelissaInk Designs says:

    Happy to hear it was good stuff :)

  4. When I dressed my daughters in sleeveless dresses in our cold house, my grandmother would say that her pediatrician (from the Ukraine) used to say that the shoulder blade area is an area of heat regulation in children. Maybe sleeveless shirts would help him stay cool? He may look like he’s ready for NASCAR, but hey, if it helps…
    So happy that you had a great appt. Remember when all there was to stress about was an LSU final?

  5. Awesome news! If he is into walking push more walker time! I know ABR says not too much but Cj feels so proud of himself when he is in his walker! It is like “LOOK AT ME !” :)

  6. Katy!!! This is phenomenal news and I’m thrilled for you! I am so excited for Charlie and do hope to soon see some pics of him walking. Woohoo on the PT for that! Also wonderful that your pediatrician is so in tune with you and your wishes/thoughts on everything.



  7. What an awesome appointment! I’m so thrilled…and need to hear more about this “into the walking thing” comment!! That sounds great.

  8. I just had to read that part about overheating out loud to my husband and we both had a exasperated sigh about it because every time Avery has been sick with something shunt related she spikes a fever, and her neurosurgeons always say it must not be shunt related because a fever means it’s an infection of some kind, and we have ALWAYS told them she gets a fever when her shunt’s having issues and that it’s not an infection. It’s always made sense to me that since body temperature is largely controlled by the hypothalamus, (which is RIGHT NEXT TO the fourth ventricle, and therefore affected by dandy walker, which Avery has) that any kind of damage to that area could affect the body’s temperature control. The neurosurgeons always treat us like we’re crazy for thinking that. AARRRRRRGGGH!!!!!

    • You know what’s really weird about it? Charlie almost never has a fever. I think that clearly his brain has trouble doing the right thing with regards to temperature.

  9. Walking??!!??!! ;0) Do share more of this please!

    And, I’m thrilled for you guys! Thrilled. Our neuro doc always tells us that the outward positives we see in growth and development are true indicators of what’s going on with the brain, so yeah, Charlie is rockin’ in rollin’ with progress so his little boy brain is doing what it should be!! High Five guys!

    • Yay! The “walking” is done with a lot of support, but the look on his face is truly joyous so I want to exploit the good feelings while I can.

  10. Hooray! Gotta love laid back, good news appointments! I was just talking about the DTaP last night with @heartsandhandss on twitter and she was telling me about being able to get the vaccines separately, except for pertussis, which doesn’t come on its own. So, she might have an idea of where you can get just the tetanus shot.

  11. That sounds like a pretty great appointment! Isn’t it nice when other people see how amazing your kid really is? Gotta love it! My ped and I decided to split out the DTAP shot because of the risk of seizures. After that, the nurse practitioner at our neuro’s office suggested we give the full shot to Emily anyway because she thought there was more risk of seizures if she got sick. I never went back to the ped to do that. We saw the np once. I didn’t really feel confident in her ability to speak to our specific situation. Plus, when we saw her, it was just after Emily had a bout with seizures. Didn’t really feel the need to be messing with things at that point!

    • It surprises me how one medical professional will just contradict another. I want to say, “do you, regular doctor, want be to disobey the direction of our neurologist? Can I tell her you said that?”

  12. Yay! Glad to hear the appointment went well. I have been checking in on Charlie from time to time, and I have to say he looks amazing. It was nice to read that your doctor was saying such wonderful things and that she was supportive of being less assertive to protect his brain than the opposite. Now, that is refreshing to hear. Congrats.

  13. Awesome.

    I remember that feeling. The all ‘f’s feeling. We fired the developmental doctor that saw us at clinic every couple months. She did NOTHING for us but remind us how little he was able to do “On Time”.
    We *ahem* politely explained that we could give a crap about the typical timeline and were thrilled at every. little. thing. he could do.

    We go to clinic next month to see the whole team. I can’t wait.

  14. Jailen's Mom :) says:

    I keep thinking of doing a 24hr EEG just to see because Jailen has the eye shake thing going on too that we’re not sure about. I’m so glad you had an awesome visit! :) Those are sometimes few & far between.

    P.S. Jailen eats paint too. I’m not too fond of art time. He thinks it’s hilarious to lick his fingers & watch me fumble around to get paper towels, wipes, etc…whatever’s closest. These boys are the best!! :)

  15. Ack! I LOVE that you had such a good appointment!!! And the walking? Awesome.

    Stephen ate paint until he’d been in school for several months. He doesn’t do it anymore, and just today, in fact, his teacher was telling me how well he did painting with the paintbrush today during art!!

    • He doesn’t really eat the paint. He’s a finger chewer and just doesn’t MIND the paint. Sigh. I’ve never gotten him to use a paintbrush, though. That’s awesome.

  16. Glad to hear things went well.
    E-mailed you a while back to see if you’re interested in participating in our Oct. show in Madisonville, but never heard back. Are you too busy?

  17. All of my kids giggle in their sleep. They are hilarious. I think it means that they are having a great dream!

  18. That’s great news! It’s very rare to get a doctor visit in which not a single thing annoys you, that’s for sure. And it’s especially rare not to have doctors argue with you about vaccines… I get grumps from the nurses for even delaying my kids’ shots.

  19. @Katy…support or not, either way, that’s one foot in front of the other. my friend! Glad to hear about Charlie’s walking. Keep us posted.

  20. I started to comment on this post Tuesday but got distracted with the stupid freak storm that passed over us.
    So I am back now… have to say my heart was so full when I read this I was giddy. I am so excited that he is trying to walk I knew it would happen WOOHOO and the great neuro report sweet.

    I just came off a small workshop about contraceptives for the disabled. Can’t you just wait to have that conversation with your sweet Charlie now that is a challenge to look forward to LOL

    Hugs to you three :)
    Have a great weekend going to look at the video now.