If a dog can have stem cells...

Hundreds of animals including dogs and even horses have been treated with stem cells here in America. They have been doing it at this practice alone since 2005! This makes me so angry because animals are getting treatment here and our children can't. Parents are having to take their kids out of the country in order to get them help, hence the high price and the need for donations, fundraisers and spaghetti dinners.

We shouldn't have to go to another country to do this.

It will be another 10 years or more before we see stem cells being used here in this country. Why on earth will politicians, who've never had to deal with the issues us parents face, not allow stem cells from the patients OWN body to be used? When you hear stem cell research, anymore people automatically think of embryonic stem cells and the issue is shut down. When I talk about stem cells I am not talking about the killing of babies to gain embryonic cells. That is an entirely different issue. I do not support fetus cells being used. I support the research and the use of the patients cells, their own adult stem cells, to be used for healing.

If our beloved dogs can receive the healing benefits treatments with their own stem cells, then our children should be able to as well. 

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.

Thanksgiving & birthday blessings

Liam was the show at our Thanksgiving dinner this year. He started laughing and couldn't stop.

We still aren't sure what was so very funny.

But it doesn't matter. We love hearing him laugh.

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Two days after Thanksgiving we celebrated Liam's 3rd birthday. After three years, it's still very bittersweet. While I am so very thankful for Liam and the day we get to celebrate his life, I am always saddened by memories of his early birth and his twin brother, Brady. I have to fight off the melancholy that tries to overtake me. Even though we get to celebrate Liam, there's just a lot of baggage to overcome. Maybe if Liam wasn't facing so many challenges it would be easier to move on. I don't know.

 Liam, though, did have a wonderful day. We would break out into birthday songs for him throughout the day and he would smile. But by far, his favorite was a little Disneyland song we heard years ago on Rylie's 10th birthday.

"This is your birthday song! It isn't very long.
Ok. That's it!"

And that's really all there is to it! But he thought it was hilarious.

Unwrapping his first present.

FOR ME!?!

Trying to eat the paper.

He loves this drum!

Getting serious about his skills.

A big #3 for the birthday boy and a single candle in honor of Brady.

Waiting to blow out the candles...

YUM!

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.