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. ;)

Got his back

We finally had an appointment with Dr. Kid this week*. We haven't seen her since October so a lot has transpired for Liam since then. He's had a visit with an old school neuro, a Russian endocrinologist, and one gung-ho high calorie GI NP.

We had a lot to catch up on!

I told her all about how the neuro appointment went and asked her if maybe we could find someone else who would take Liam seriously as a patient and not a number. She thought that would be a great idea especially since Duke is doing cord blood stem cells for kids with CP. I hadn't thought of that. We always get shuttled to Chapel Hill for everything so Duke just never entered my mind. And Dr. Kid is all for us doing stem cells. I talked with her frankly about our options, where we want to go and what it entails and she said to go for it. She's frustrated with how politics has taken over and ruined what stem cells mean (most people think embryonic) and she understands why we want and need to leave the country. She can't wait for the day that it's being done her in our country.

We discussed the findings from the endocrinologist and while she had never heard of the endocrinologist we went to nor how we ended up with that particular one, she suggested seeing another endocrinologist at Duke. I told her I didn't want to waste another full day of driving just to be told the same thing; that Liam doesn't need any help with growth. She understood and asked me if I wouldn't mind her emailing him for us. Absolutely not. Email away! If he is of another opinion, I'd be glad to hear it. I just don't want to drive hundreds of miles to be told the same thing.

We also talked about another round of HBOT. She was all for that as well. Until she heard where I wanted to go. Because the Dr. there has never treated kids with CP, she was unwilling to write a new RX for it. She said if I wanted to go anywhere else she would write a new one right then and there, but because this Dr. doesn't treat kids, she did not feel she could comfortably write the RX. I completely understand that. I did explain that a chamber is a chamber and it doesn't matter if it's a kid or an adult in there, the chamber operates the same. She told me to give her Dr. O2's number and she would personally talk to him about it. If after talking to him she felt comfortable, then she would go ahead and write a new RX.

I love Dr. Kid. She spent 45 minutes with us at the appointment just talking to us over everything, working out the next steps and taking the initiative to make those things happen for Liam. It's awesome to know that out of all the Dr.s we have seen, at least one of 'ems got his back.


*The little dude was up to 26 lbs 14 oz!

Follow up to the follow up

Remember my post about the new neurologist we saw for Liam? He was against stem cells (said they were going to be stopping it at Duke), was against HBOT, and said Liam had athetoid CP? Yeah, him.

I just find out yesterday what he wrote in Liam's report and sent to the team of therapists at our clinic.

Apparently it was so out of line (out of touch with reality is probably more applicable) that his PT said she kept flipping to the front of the report to make sure he was talking about the same boy! She said nothing he wrote sounded like our Liam.

She paraphrased what it said.

First off, this neuro wrote in his report numerous times that Liam was blind. Yes, he is technically blind, but the little dude can see! You've seen the videos of him picking out shapes, colors and pictures. He isn't totally blind. yes, it is a disability but she said he made it sound in the report that he couldn't see anything.

Secondly, he said I pushed to try Sinimet for Liam and that he didn't think it was going to help at all but that because I "pushed" it, he relented. None of that is even true at all. I asked him about trying this medicine and he said we could go ahead and give it a try. I didn't force anything. And remember he said just to call him if I felt it was working...no follow up to actually SEE Liam on a medicine that you have to be weaned off of once you go on it. And guess what?  This supposed non-helping medicine has helped Liam's ataxia a lot! He was so calm in therapy yesterday that they remarked about how controlled his arm movements were!

Thirdly, and this is the one that pisses me off the most, he said that he didn't think continuing therapy was going to help Liam but that if I wanted to continue to go he wouldn't say no to it!

I was so very, very mad.

This Dr. doesn't know a thing about anything! And he's a specialist!

Thank God that Liam's dependency on therapy is not based on his report, because if it was, he wouldn't be able to get it anymore!

And even though I knew I didn't like this Dr's attempts at practicing medicine on my son, it just cemented for me that I would never step foot in his place again.

Follow up to the neurology appointment

I left off the last neuro post saying that the neurologist wasn't keen on stem cells. I mean, he wasn't even interested in them at all! I brought up stem cells and he almost laughed it off as a scam! I was really shocked about it because this was a neurologist at Chapel Hill. A reputable institution. Duke is right down the road and they are already doing stem cells for kids with cp if they have banked their own cord blood. It's not like stem cells is a stretch of the imagination or something...it's happening! It's been happening for years.

The neuro said that stem cells were a waste of money and that Duke was going to be getting into trouble with it. Huh? My heart plummeted because I knew I wasn't going to be getting any useful information out of this Dr. I knew asking him about hbot wasn't going to go over well either so I just straight out told him that we had done it before he could say anything negative. I also told him that our son was using his arms for the first time ever after our last round and that we had seen great improvements in Liam. He really skirted around the hbot topic and didn't say much of anything about it.

We quickly got on the topic of the new medication, sinimet, and that was how we ended our visit.

Here's how detached this appointment was: the Dr didn't even tell us when to come back for a follow up. He puts my little boy on a new drug that actually crosses the blood brain barrier and he doesn't need a specific follow up? Not only that, but I read in the RX information today that you just can't stop this medication once you start it. They have to be weaned off. Well, heck if I knew that! He never said a word about it.

I was trying to not have any defined expectations about meeting this Dr.

I am really saddened by the two neurologists we have met. They have been so closed minded to options that aren't being paid for by insurance and medicaid. You have parents saying that these things are working and helping their kids and we have Dr's who just won't listen. Or just don't care. And I just can't figure out why.


**eta: He said that kids like Liam would never walk or talk and if he had some of his good grey matter left we might be able to get Liam to communicate with some device. Yeah, that's how little he got to know Liam in that appointment.

A new neurologist

Liam had an appointment at Chapel Hill this past week that I hesitate to even mention. It was, for all intents and purposes, a complete waste of time.

People don't go to a neurologist unless there's a problem. So, I know they don't have the greatest job in the world. They don't get to spread peace and happiness with all of their patients.

I really just wanted to get some information from him about HBOT, stem cells, and a new medication to help with his ataxia/athetoid movements.

He said Liam has spastic diplegia in his legs. That mean that he has higher than normal muscle tone and it affects both legs. We already knew that. Fortunately, Liam's high tone, while it causes trouble, is not severe for now. What I found interesting was that when he checked Liam's reflexes in one leg, both legs would bounce. It was fascinating. And it wasn't normal.

Then he said that Liam's upper body is either severely ataxic or was athetoid.

Ataxic is the inability to grade your movements and will cause the person to move all over the place while trying to get to one spot. It is planned movement that is very uncoordinated. Athetoid is when the body moves uncontrollably because the brain is telling it to move even when they are not wanting to.

The neurologist felt that Liam was athetoid because if he was ataxic, he was severely so.

The therapists and myself included feel that Liam is severely ataxic. He does want to move and when he goes to move, he is all over the place. And when he doesn't want to move, he lies perfectly still. He does not show the normal patterns of an athetoid cp kiddo.

The neuro did say we could try Liam on a drug called Sinemet. It is a drug that crosses the blood brain barrier and activates his dopamine receptors. It is commonly used in Parkinsons' patients.

See that big bundle of tissue at the base of the brain? That's the cerebellum. And see where the dopamine pathways run? They run right to the cerebellum, which Liam doesn't have.

One of the side effects is nausea and vomiting. And that makes me very, very nervous. Liam is doing fabulous on his current diet. He doesn't vomit anymore.  But, I'm willing to give this med a try if it would help with his ataxia.

Oh, and his opinion of stem cells and HBOT?

He thought is was complete b.s.  But that's another post.

I don't know

Liam had a weight check last week. We still keep an eye on his weight to make sure he's getting everything he needs nutritionally and that he's still gaining. I was thrilled to see that he had FINALLY made it up and over the 25 lb mark. I think he was 25 lbs 4 ounces. Or somewhere close. lol And eating about 31 ounces of food a day.

He's steadily gaining now, albeit it ever so slowly. He is averaged about 4 ounces a month. It's not huge, but at least he is finally gaining consistently now. I knew with him no longer vomiting that we should see him finally over 25 lbs.

I really like our pediatrician. She is very sweet and she loves to talk to and watch Liam in the room. Liam always gets very hyper when he's on the table. I think it's the crinkly paper he lays on. Whatever it is, by the time Dr. Kid gets in there, he's flailing like crazy and laughing his heart out. Which always gets Dr. Kid laughing. She usually spends extra time with us just to be able to hang out with Liam.

I pulled him to a sit so she could see how he still has a head lag. But then I showed her what we do to his back to try to prompt him to pick his head up when in sitting. And then she said, "I've never seen a kid with CP do that. Normally they don't move like that." I'm thinking, 'Yeah I've heard!' But it was the first time our ped had said something about Liam being unusual. We've heard it before. A LOT. But not from her.

I talked to her about maybe seeing a new neurologist. Remember my post about our current neuro (who I haven't been back to see since.)? I told her I didn't want to see her again and that maybe we could see someone else who actually might be helpful to me. She put in a referral to the peds neuro department at Chapel Hill. We already have an appointment set up for November. I'm thinking they will want a new MRI since he hasn't had one since he was 3 months old. But, we'll see. I hate having to drive 2 1/2 hours to go, but it will be good to talk to someone else about Liam's bizarre movements or lack of movements.

We talked again with Liam's PT this past week and she said what we've always still felt, that Liam doesn't seem to fit the athetoid CP diagnosis.

I don't think seeing a new neuro is going to change much, but it would be nice to have a positive helpful person on Liam's staff. One with answers would be good too.

What do they know?

Liam had his 6 month check up with his neurologist yesterday. We should have gone a couple of months back but September and October were very crazy months for me due to school starting and coaching volleyball. I kept having to reschedule it and finally was able to get in yesterday. I was anxious to talk to Dr. Brain because we leave tomorrow morning for Liam's first round of HBOT (Hyperbaric Oxygen Treatments) and I was excited to get her take on things let alone the questions I had for her concerning Liam's development.
When she came in, her first question was the obvious, "How is Liam doing?"
So, I told her how he is doing.

I told her how my therapists are amazed at some of the things Liam can do, like eat, and discouraged and frustrated by what he can't do; hold his head up! I told her that Liam propels himself forward when he is sitting or when he is being held. He will get his head up and then sometimes it drops, but for the most part he jerks it forward. I talked about how uncoordinated he is with his arms and how he does not use them for effective play. How he has great range of motion and is flexible but still doesn't use his body effectively. How Liam doesn't fit the average mold of a child with CP.

I asked Dr. Brain what she thought Liam was doing.

She said he might have some dystonia and coupled with lower tone in his upper body it is causing him to do what he is doing.
So I asked her if there were any medications that he could be put on to help with all of this.
She said no.
Um, Ok.
Really?
Because I know a few people who are treating their kids with meds because they have dystonia!
I then asked her if she has seen kids like Liam before. She said she had.
I asked what they were like as they got older.
And she wouldn't answer.

She said I shouldn't dwell on the future and just see what Liam does.
Well, I'm pretty positive I already do that! It would have been nice, though, for her to give me a positive example of this situation, but no, Dr. Brain wouldn't say. If I'm supposed to focus on the present and continue to work with Liam, it would be nice to know that in the end there are examples of this all working out.
Then, I asked her the big question that I was dying to talk to her about.
I asked what she thought of HBOT.
Oh, boy.
"HBOT is just a big load of phooey."
"They think preemies receive their injuries from so much oxygen in the NICU so why would you put them through HBOT?"
"It's so expensive."
"There are no studies showing it even works."
"You sit in a small chamber for up to hours at a time and it's so boring."
Those were her responses!
I couldn't believe it.
I just sat there, stunned and quiet, and absorbed what she said. All the while thinking that Dr. Brain had no idea about what she was talking about. That I just wasted my time and money.

First of all, preemies have injuries from the oxygen? How did she come to that conclusion? I'm pretty sure the injuries come from lack of oxygen! And although Liam was never without oxygen from the moment of his birth, he had a wide open PDA that allowed too much blood to flow to his lungs and shunted it from the rest of his body, including his brain. His brain did not receive enough blood flow. It wasn't a lack of oxygen that caused his injuries.

Second, there are numerous studies! My nutritionist just sent me a study done on mice showing HOW HBOT works. It showed that the high levels of oxygen and higher pressure allow stem cells to migrate to the injured areas and heal them. There are studies showing rate of increase in development following HBOT. No, HBOT isn't a cure. There isn't one. But the studies show that it helps!
Third, it's boring? Oh ok. I better not try a treatment for my son because I might get bored. I wouldn't want to do that! Sheeez. I would do the most boring thing you could imagine for years on end if it would help my son!
Fourth, it is expensive. But, Miracle Mountain helps make it affordable and they give you the ability to do fund raising. But most important about all of this is that if you have heard of a treatment that might help your child, I don't care what it costs, you will try everything in your ability to make it happen. And that is why Miracle Mountain operates at cost. So everyone child with CP has the opportunity to receive HBOT!

Shawn and I closed the door to HBOT because we didn't think we could do it. We didn't think it was an option for us. But I saw God open all the doors to making this a reality for us. And I was sorely disappointed to hear what Dr. Brain had to say. I didn't even bother to tell her that we leave tomorrow. I didn't care what she had to say at that point. It didn't even matter anymore.
Her final words as we left were, "We don't need to see you back for another year."
A year?

I pray Liam comes into that room next year and blows her away.

And that would be the ONLY reason I would step foot in her office again.