Liam's having way too much fun with the paper. I should get one of these for the house.

HBOT- What to do?

In the quest to help my son, of all the most cost effective treatments available, so far HBOT has been a key component in his healing.

Hyperbaric oxygen treatments are not new. They have been around for decades. And there are numerous reports and studies showing that it heals. Certain states even have Medicaid paying for it as a specific treatment for cerebral palsy. And there are several insurance companies paying for it now too. Not only for CP but for autism as well. Ours just isn't one of them.

I found out from a friend that there is a monoplace hard chamber about an hour away from me in Morehead City. After several phone calls I finally got a hold of the Dr. They treat everything from gangrene to radiation problems, ulcers to multiple sclerosis. But not cerebral palsy. He said it wasn't a peer reviewed, acceptable form of treatment with the association he belongs in. As the Dr. said, "You wouldn't have had to go to some far away place for hbot if it was an acceptable form of treatment." Sigh.

I explained to him that it was, that there are centers everywhere treating CP, what information I had on it and what it had done for Liam. He asked if I could back that up with information from Liam's Dr or his therapists on his improvements. Heck yeah we can!

He asked me what I paid for our previous dives. I told him we paid $3000.00 for 40 dives spaced twice a day. He did some quick calculating and said that that was about the same price they would get reimbursed for from BCBS if they were to bill them. So, he could foresee us doing 40 dives for only $3000.00.

He then said that if I could get a script from his pediatrician or even just a phone call from her letting him know it was approved by her, he would let Liam dive. Even though he's never treated kids with cp.

Three grand for 40 dives and I get to come home every night. No long drive across the state and staying away from my family for 3 1/2 weeks. No reorganizing everyone's schedules to get everyone where they need to be when we only own 1 car and I took it with me...

BUT

It's a monoplace chamber.

I'm not sure how that will work. He said I can lay in the chamber with Liam myself if it's too much for him to be in there alone.  There is no hood over his head like before at Miracle Mountain. Since it's just a monochamber they flood the entire chamber with oxygen. So Liam and I would both be getting the treatments.

AND

We don't yet have the three grand.

BUT

I am praying that God will make a way. He has before and He can do it again.

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.

Using a felt board for learning.

I realized once Liam started picking out the pictures I asked for on the felt board after singing a song that we could use it for so much more.

I decided to start with the basics and just use different colors and shapes.

I took this video the second time I sat with him and used the shapes.

Learning shapes & colors from Jennifer McIntosh on Vimeo.