Stem Cell Treatment

This was a big trip for Tommy and our family. We were able to get a whole week of varied therapies while also getting the MUSE stem cells in three individual doses (an intranasal dose of 5 million cells on Tuesday, an IV dose of 20 million cells on Wednesday, and a second intranasal dose of 10 million units on Thursday). The two intranasal doses are designed to go straight to the brain, with 80% of the cells reaching the brain within seconds. The IV dose is designed to travel through the bloodstream to affect the rest of the body as well. Once the cells are inside, they immediately go to work repairing damaged cells or transitioning to cell types in the area of the body they are administered to. Stem cells in the brain can become new brain cells, new neurons, or repair existing cell damage. Similarly, stem cells in the body will transition to new cells of the types found in his body tissue and organs.

For the therapies, Tommy had physical therapy every morning, Monday through Friday, with Fernanda and Ramon. While similar to his usual physical therapy, we learned some new tools to apply to his day to day. Just a few examples are using a Velcro padded belt to keep his legs immobile so he can work on his trunk and upper body control. This is similar to how the stander works, but it's much less restrictive on Tommy's upper torso to allow more of his internal mechanisms to kick in and let him understand what his body is asking of him when he is not getting that constant support. Another big one is to not focus so much on getting Tommy's hands open when bearing weight. He likes to keep his hands balled into fists when exerting himself in a task like crawling or even balancing on hands and knees. He's been much better opening his hands when using them, but it's a big struggle to get them open for other tasks. With their direction, we can focus on the stance more than the hand position, as gravity will indicate to him that the hand needs to open without our input, and we don't have to worry as much on forcing him into an uncomfortable hand position on top of his weight bearing positions (which are already uncomfortable for him).

In addition to the physical therapy, he worked every day with Simoné on speech therapy and oral motor therapy. She very much matched Tommy's energy, coming into every session with complete love and happiness, and he did really well with a few new introductions to his normal speech/oral motor exercises. He worked on his vowel sounds with face pressure to help guide him on how to manipulate the muscles in his mouth and tongue to form different sounds. He also worked on keeping his tongue back in his mouth when making sounds, drinking water, or eating food. He did all of this facing a mirror, which is helpful for him to see and reinforce what is expected for different sounds or movements.

Aside from these main therapies, Tommy had daily red light therapy coupled with microelectricity therapy. These are two therapies designed to improve the efficacy of the stem cells and other therapies by working in tandem to do the following; 

-Reduce inflammation (to help speed up muscle recovery and body/cell repair) 

-improve circulation (to increase collagen and elastin production)

-lower muscle spasticity 

-increase ATP production (cell energy molecules to help jumpstart damaged tissue repair)

It was essentially a large red light overhead lamp and two different electrode pads for his forehead and the back of his neck. The red light wasn't too intense, and the electrical stimulation used a very low current in line with the body's natural electrical activity.

Finally, he had a few sessions of neurofeedback. This involved sitting in front of a tv with sensors on his ears and the top of his scalp to monitor his low, medium, and high level brain waves to track his focus levels. When he was focused on the screen content (Ms Rachel or Bluey), the image remained sharp and in-focus while the speakers beeped to provide positive feedback. When his focus would drift, the image would fade to white and the beeping would stop. While there is a good amount of supporting research, we found this was the least explained therapy, and the therapist wasn't able to provide much in terms of how we could increase his focus, or how this might relate to his Dynavox eye gaze device. We did miss the last session, so it's possible we would have had more from a recap after that last session, but it's hard to tell from only the two sessions we had.

"Results" probably isn't the right word for this kind of therapy because there isn't anything specific to be looking for. Instead, the intent is to allow Thomas to make his standard gains in much less time than he was before the stem cells were administered. We've spoken about inchstones before when looking at his progress, so this would be an increase to the rate he's able to achieve those inchstones over the next half a year or so, with peak gains starting about 2 months after administration of the cells, and tapering off after 5 or 6 months. All of these gains will be permanent, so the only thing that will fade is the boost to his developmental abilities. There are a few things we noticed that might be the therapies, might be wishful thinking, or might be a sign that the stem cells have boosted his development a bit already; his drool production is much lower, which is likely due to the focus on his oral muscles with Simoné. He also is swallowing liquids and solids better. His sitting posture is more stable when his legs are bent at a 90°angle, and we've seen much better target acquisition on things like high fives. He will do one larger uncontrolled swipe before slowing his arm down and hitting his mark. This is all improved over the past week, but we don't like to assume, and will keep a watchful eye on his development over the next few months. 

While I'd like to continue talking about the specific information, therapy details, etc, I want to take a moment to highlight what we saw in the clinics during our trip. We met families from all over the world, including Kansas, Florida, Egypt, the Philippines, and Australia. And that was just the families we spoke with during the week. Everyone we were lucky enough to share stories with had a common theme. These parents have all done their research, and have all gone above and beyond for their children. Some had brothers or sisters come along to support their siblings, like us with Jonah. Some were there with their only child. Some of them were younger than Tommy, some were older. But regardless of the location, the family members present, or the age of these kids, everyone had an overarching sense of hope. No one was looking for a miracle 'cure', just to help their little ones grow and gain more independence for their future. 

We have similarly high hope that this will help Tommy get on top of some of the things he's been challenged by lately, and have set up a two week DMI intensive with Shoshana at Baby U Got This, our second with her. We actually start this Monday, and are eager to see what progress will come from this. We will be sure to update when we return, so please follow along and share this story to help other parents who may be considering a similar route but may not be able to find much information out there. And once more, a huge thank you to everyone following along and supporting us as we could not have done this without your love and selfless support.