Neuro Check Up 7 Years Later

No, that title isn't a typo. I really did wait 7 years between neuro appointments. The last time we went it was a joke (Dr said stem cells aren't helpful,  it was a shame Liam is blind, said if he had ataxia CP it was the worst he's ever seen, blah blah- I mean he was older than America so I just uh huhed him at every turn) and other than giving us a new med to try it wasn't a helpful or productive appointment. After finding out the medicine had some pretty serious side effects I never even put Liam on it.

Fast forward to this summer. Liam's weird jaw issue has not abated in the least. Some days he's great and other days it's a non stop battle of forcing his jaw shut against him cocking it open and gasping for air. So, we decided to see a new neuro and prayed there was something that could help Liam because baclofen isn't cutting it. Maybe he needs a higher dose? I dunno but that's a different Dr, so off to Chapel Hill we went.

Three hours of driving, with two of them spent listening to Liam cry, we arrived. I hate that drive. Anyway, got called back pretty quickly and to my utter horror, the exact same neuro walked in the door from 7 years ago. Now he's older than dirt. My jaw dropped open the moment I saw him and I turned to my mom so he wouldn't see me gaping at my horrible luck.

He grinned and said hi and asked me how the medicine worked all those years ago. I told him I wouldn't know because we never used it and honestly, if we had, I've had too many sleepless nights since then to remember if this particular one worked well or not. He did spend a lot of time learning about Liam and how he is doing in school and with his eye gaze and spent a lot of time playing with Liam's sweaty hands. He asked if we knew what kind of cerebral palsy Liam has and I told him he told me years go that he felt Liam has choreoathetoid CP. Or it could be a really bad worst case scenario ataxia. He was playing with Liam's hands at the time and said his lovely loose hands and free movements of them showed to him that Liam has choreoathetoid. I asked him how many kids he's seen like that and he said 4-5. It's not very common and it's stupid hard to treat. Stupid hard.

He mentioned the medicine again, levodopa, which is a Parkinson's med, and felt it was worth a try. He said Liam has damage to his basal ganglia (that has never been shown in his MRI) and that that has caused Liam's rare form of CP. He said some kids with different disorders that affect the basal ganglia learn to walk after going on this med (that will never happen for Liam) and it could really help with his extra movements. He also mentioned a patch to help for the days Liam likes to push all his saliva out of his mouth instead of swallowing it. Love those days.

I decided to give them a try and he went out to get the rx. Ten minutes later he still wasn't back. I go out in the hall to find him and one of the nurses asked me what I need. I tell her I'm looking for the Dr and another nurse said she heard him in his office dictating notes. I cried WHAT a little loudly and the ladies started laughing. I told them I hadn't been back in 7 years because I was hoping that Dr had retired. They laughed even harder and said they have heard that before and others were wishing for the same thing. One of them went to track him down and another 5 minutes later he came back with the rx. As he walked in the door he told my mom she had come with me the last time (good memory) and then asks me if I want a business card. I said sure and then he hands one to my mom saying she could have one too since she came with me, like he was handing out lollipops for good patients. He left and we walked out the door laughing.

I couldn't be angry. Frustrated yes, but not angry. I should have checked to see if it was the same Dr seeing Liam, so that is all on me. I had assumed he's retired. I'm not kidding he's OLD. I was hoping for young fresh eyes on Liam but maybe that will happen next time. I did feel the appointment was useful as we had two new meds to try. He said we would know right away if the levodopa would help and I'll leave that for another post. ;)

You blog?

Recent conversation:

Friend-You have a blog? 

Me-Yeah, I actually do. 

Friend-What's it about?

Me- Well, nothing lately. 😜

There is so much to write about lately and I just never put my thoughts to the blog. 

I'll start to ease my way back in because there was just too much drama this summer to put in one post. I'll start by saying we put Liam on cannabis oil and its the best thing we did. 

His recovery from his double osteotomies this year was long and painful. He didn't move his legs for months after the surgery and for many months more he barely moved them. When he finally started to pull his legs up while on the floor, he would get them stuck and then cry because he couldn't put them down. 

And then there was the sleep. He would wake up miserable many times a night. It's times like that I'm thankful he's in my room because I can roll out of bed and be right there to reposition him. 

I'll explain in another post how I got into cbd (cannabis) oil but it has been a game changer for Liam. He's been on it now for 4 months and we've seen a lot of benefits so far. He's sleeping, his pain from his hips is gone, and that leg thing where he would get stuck in position? Gone. 💚

Summer was challenging this year. I'll save those moments for some later posts if I ever get back here. Needless to say, I'm happy to welcome fall. And hopefully less drama. 

Opinionated

I imagine we are all opinionated. Liam's no different. He isn't able to freely verbalize his strong opinions as we are wont to do, nor can he tell us he disagrees with our leanings. But give him the chance to express his feelings on a school subject and he can tell you he doesn't want to participate.

R: Liam it's time to write your sentences. Do you want to write about flowers?
Liam: No
R: Do you want to write about birds?
Liam: No
R; Do you want to write about bees?
Liam: No

The teacher hears this exchange and says, "Do not give him a choice on writing his sentences! He's a boy, of course he isn't going to want to do it. You have to make him do them."

Add caption

R is always the sweet softie. "OK Liam. You have to do all the sentences."

R: Flowers _________?
 Liam: Grow

R: Birds___________?
 Liam: Fly

R: Bees ___________?
 Liam: Buzz

Show off.

No more hardware!

Last year some shocking details were left out in advance of a procedure Liam went through. At the surgical consult, surgery, and subsequent 5 day hospital stay, no one ever thought to mention some pretty significant details, not even the doctors. I discovered the particulars on my own at one of the follow up appointments when they hung his x-rays up on the wall. They didn't look right and I snapped a quick picture with my phone as the doctor hurried out of the room. The Chapel Hill orthopedics department was packed full that day and we were lucky to get a room to get Liam's casts off. They were afraid they'd have to do them in the hall and with everyone rushing everywhere the doctor gave us just a few minutes of his time with broad grins about how great Liam was looking and that he was healing well. But to me, the x-ray look awful.

As soon as we got to the car I started looking at the picture. I couldn't wrap my brain around what I was seeing and Liam's newly uncasted legs were giving him fits so I had to care for him all the way home. Once we got home I started to dig a bit further into the weird picture and the obvious metal plates shining back at me that I had never before seen nor even knew existed.


It's quite shocking to be looking at your child's 4 week post op x-rays and come to the horrifying realization that they cut his thighs in half and braced them back together with titanium brackets and you had no idea it had been done. I was just sick to my stomach. I was physically ill all weekend. I messaged friends in the field trying to figure out what had happened.

Liam had been in a lot of pain during recovery and we assumed it was just a lot of discomfort from the tendon lengthening and the heavy casts with his legs spread 16" apart along with the hip correction. Apparently, there was a whole lot more to his surgery than the doctor initially let on.

I called the doctor bright and early Monday and shared my feelings about our big surprise. He was just as taken aback by my reaction as I was by his insistence that he had told me all about cutting the femurs in the pre-op consult. I firmly told him he was mistaken and reiterated a significant detail he told me at the consult. He said that he won't do this surgery on all the kids who come in needing it if they don't have a good home life, won't receive the proper post-op care, and won't get adequate therapy and follow up over the years to come. He told me he would do the surgery on Liam because he knew he was well taken care of and it would improve his quality of life and then he told me all about how they might have to use cadaver bone, would have to put a bolt in his hip, would try to save the socket, etc... I was able to recall almost the entire conversation with him.

Bulge on the outside of his hip from the hardware.

When I reminded him of our talk he halfheartedly admitted that he probably didn't fully explain the entire surgery. When he told me they would cut Liam's femurs, we had been talking about the ball and socket where his left hip was coming out.

He never stated he was going to cut both of his femurs mid thigh, realign them, and brace them. If he had, I never, ever, would have consented to having his right leg done. There was nothing severely wrong with that leg. The right leg didn't have an issue that needed such significant surgical correction. I would never have allowed both of his legs to essential be broken and casted at the same time, when the one wasn't even an issue.

We were in the middle of the school year when we scheduled the surgery, having been told Liam would only need a week to recover. I would have known Liam needed more time to recover than a week and wouldn't have scheduled it when we did if I'd known everything involved. He ended up missing an entire month of school, because who wants to go to school with two broken legs in casts that are separated with a bar? And all along we just thought he was just miserably uncomfortable, not recovering from two broken legs.

Another angle of the bulging hardware. Looks comfy, no?

When he admitted to not telling me all of the details, he stated that maybe the parents who are fully invested in their kids should see an x-ray of what their child's legs would look like after surgery so they know what to expect. I told him that was an excellent idea as I didn't get a say so before hand on what was coming. When I told him I never would have consented to the surgery on the right leg he tried to tell me that it would have had to eventually be done anyway, "because you see that happen all the time in these kids". Which frustrated me all the more because, as the parent, I get the final say so in how my son is medically treated. I should have been given the option to say no. I should have been told so I could have lessened Liam's suffering and prevented an unnecessary procedure from happening. It was not the doctor's decision to make in this instance. It was entirely mine.

Recovery from hardware removal.

Over the past year Liam has lost a lot of rotation and flexibility in his hips, had a significant increase in clonus of both legs (muscle spasms), he gets cold very quickly, and he no longer would lay on his side due to the protrusion of the plates. They were very hard and uncomfortable.

After a full year, if proper bone growth has taken place, you can opt to have the hardware removed. Which is exactly what we did. I couldn't wait to get those stupid plates out of his body and scheduled to have it done right at the one year mark. It couldn't come fast enough.

The curved top is what was sticking out from his upper thigh above.

We are only a week post op and I can tell he feels better already. Once all the swelling goes down, the pain subsides, and his incisions fully heal, I think we will have a much happier little boy.

He already has more movement back in his legs and I'm looking forward to the day when he can cuddle with me again. We haven't been able to do that in over a year.

I am always learning on this journey we are on. I thought I had asked all the right questions, I thought I knew exactly what was taking place during the surgery, and I thought I was well informed of the recovery. I wasn't. I can't beat myself up over it when he admitted to not telling me all the details, but it just goes to show that you can think you know what you are getting into when you suddenly find yourself thrown from your high horse into the ditch, trying to pick yourself back up, and wondering what the heck just happened.  So, we saddle right back on up, and keep on keeping on. :)