A most enlightening conversation

Yesterday I spent a couple of hours on the phone with a lady name Kirshner who runs one of the brain injury Yahoo groups: BIA4KIDS. This is one of my favorite groups as most of the parents are very proactive about helping their kids. She shared with me a great deal of information and I thought I would share it here.

The original topic was whether she thought Nathan would be a suitable candidate to receive stem cells in China. Her opinion was NO. She explained that for stem cells to work in the brain they have to cross the blood brain barrier. Once a child is 3 years old this barrier is thick and the stem cells may not make it through the barrier and into the brain. The way that Beike gets around this is by giving the kids a shot of stem cells through lumbar puncture – this guarantees that the cells go right to the brain. Nathan, however, is not a candidate for a lumbar puncture because he has a shunt. There is a risk of infection if they do a lumbar puncture on kids with shunts as the infection could go right to their brains. She believed Nathan could have gains with just the IV injection of stem cells but she believed the gains would be minimal and there wouldn’t be sufficient ROI. Now Kirshner is a HUGE proponent of stem cells so for her to say she doesn’t recommend stem cells for Nathan is something to take notice.

We talked about Nathan’s MRI. She was amazed at how well he does given how affected his brain is. She sees signs of very severe damage and told me how lucky we are that he can function as well as he does. She believes that part of the reason for this is that he does have at least some brain tissue in each of the lobes and there is a little bit of communication between all four lobes which allows him to function.

We talked about all of the different alternative modalities and she believed that I was on the right track by choosing several different paths. However, like everyone’s been saying, she believes it’s important to stick to each technique for a while to give it a chance to function. She told me about Gene Lewis and said he’s the best sensory therapist available. I’ve contacted him and made an appointment. He is trained in the Doman-Delacato approach but has integrated many other healing modalities. She believes this is very important for Nathan because he needs therapies that emphasize communication between the hemispheres and patterning is a great way to do this. He seems to also use other healing modalities so I am willing to talk to him to see what he thinks!

She also emphasized the importance of HBOT. She believes that every child with a brain injury should get regular HBOT treatments. We have a chamber but haven’t been using it, which she reprimanded me for. I have always had doubts about Hbot because I’ve never understood the difference between malformation and brain injury, and I wondered if maybe Nathan would gain limited benefit from HBOT since he has a malformation, not lack of oxygen. She explained that regardless of what the brain looks like, any and every brain would benefit from regular hbot treatments because it improves oxygenation to the brain at the cellular level. So my goal is to get our chamber back up and running so we can start diving again.

She recommended the use of theratogs to give him a little bit more stability and better alignment. We have theratogs but stopped using them because we started Medek. Medek is all about removing support, and theratogs are all about giving support, so there seems to be a conflict there. I will be writing to Ramon to ask him about this.

Finally, she reccommended the following supplements: Vinpocetine and Magnesium calcium. She explained that vinpocetine and magnesium calcium in high concentrations has a vasodialation effect that also helps for kids with brain injuries. I don’t really understand this yet but figured it was worth exploring! Coincidentally, I have an appointment with Dr. Kenny tomorrow so I will ask her about this.

It was great speaking with someone who has walked this path ahead of me and who has great knowledge and understanding about the brain injury world. I’m going to check out the things she recommended and hopefully we will be able to knit everything seamlessly into a pleasant, gentle rhythm for Nathan.