I’m tapping into some P.Y.P. lingo from my days teaching under the I.B programme in Switzerland and London. It feels good to be living in a place that contributes to the opportunity to be a life long learner. Of course you can do it anywhere, but gathering with other like-minded folks for something that you all have in common in some way, well, it feels pretty good. Recently I have been able to attend two conferences which helped me learn more about the possibilities in cerebral palsy AND epilepsy research.
The first topic discussed the new CP Registry in Ontario and throughout Canada, which collects information about cases of CP throughout the country. Statistics support what I already knew, that our case is among the lower percent of CP cases. It’s great to be unique. Dyskinetic CP affects 7% of the CP population and Ataxic-hypotonic affects 4%. Post neonatal (affecting after or during birth) affects only 3% of CP cases. That’s us. It talked about the co-morbidities — such as having CP AND seizures, being non-verbal, needing feeding assistance, vision and auditory impairments — being higher in those dyskinetic and ataxic cases. Again, that’s us. Children with these types of CP are also greater affected by their CP. It’s really difficult to listen to these statistics, they can start to get me down. But I remind myself that they are stats, my child is unique and life must be lived that way. We do what we can and enjoy life as it is.
The main topic of the conference was stem cell research. It’s all the rage these days. Well, I hope one day stem cell therapy IS. And I believe that it will be. But not yet. The Key Note Address was given by Michael Fehlings MD PhD: Repair and Regeneration of the Brain with Stem Cells in Cerebral Palsy: Hope or Hype? There was a lot of information to digest in both of his talks, but I came away understanding how stem cell therapy can work and the types of research happening right now through trials in North America. Duke University is using stem cells from umbilical cord blood in a current trial. This is definitely promising. Another trial will also include the use of sibling cord blood, which is exciting too for those who were not able to save their child’s cord blood since he was whisked away at birth because he was not breathing. There are also centers overseas doing stem cell therapy, such as China, Germany, and the Dominican Republic. These countries are performing stem cell therapies using donated stem cells from others, umbilical cord stem cells, and even the patient’s own bone marrow stem cells. Dr. Fehling’s is very skeptical of these places because there are many different types of stem cells and your brain needs the right ones to regenerate properly. The wrong stem cells can either do nothing, meaning tens of thousands of dollars down the drain, or worse, they can cause tumors in the brain. Embryonic stems cells can cause these tumors. The kind that are non-cancer causing are neural stem cells. These neural stem cells must be made a certain way so as not to create cancer causing cells.
Dr. Fehling’s discussed the different types of stem cells as well as the goals of stem cell therapy. He also shared links for stem cell therapy trials going on in North America and put an emphasis on making sure they are registered trials, otherwise they can be centers that are doing their own research, but do not follow safe guidelines. He talked about the different injuries in the brain and how some stem cells need a bridge to get to those places (such as in a grey matter injury, the basal ganglia (which is where Sebastian is greatly affected), so this ‘bridge’ would have to be injected with the cells to make that connection and then be directed to the target area for regeneration. He also said that only 3-5% of the cells actually get into the brain. His emphasis was that stem cells are more likey to help certain injuries rather than CURE.
I took many notes and left with feeling HOPEFUL in stem cell therapy. The possibility of using banked cord blood to make the neural cells needed IS in future technologies. Moving forward in stem cell research, is the search for the best cell type to be used and the appropriate patients for stem cell therapy. I also left feeling strongly that the current options in these other countries are not right for Sebastian and the brain injury he has, even if they are working for other families that have taken their children and seen results through these therapies. One of which was a mother seated next to me whose son was born prematurely and has severe dystonic cp. Would we get Sebastian involved in a registered clinical trial for stem cell research? Maybe. It would have to be the right one and now I feel armed with more information about knowing if it could be one that would help him. It’s not something to be taken lightly by any means. But there is hope. Even in the hype.
The other topics discussed at the conference did not relate to Sebastian’s type of CP, but were interesting and I’d be happy to pass on more info for those interested. Two types of therapy were discussed for children affected by hemiplegic CP, specifically caused by perinatal strokes. There is currently a clinical trial using Non-Invasive Transcranial Magnetic Stimulation in Calgary, Canada. This is a very promising therapy and perhaps someday trials will also include children with CP from different causes. Constraint therapy was also discussed for children with hemiplegic CP. There was also a talk about research using CP animal models to better understand childhood CP. As an avid animal rights advocate in the past, I was surprised at how thankful I was about the current research using animals which may bring about therapies that could change my son’s life.
Overall, there was a lot of great information which brought together parents, medical professionals, therapists, and people with CP. The conference ended with a Family Forum panel discussion. My favorite comments came from a young woman who had been a client at Holland Bloorview growing up. First she asked how parent’s choose to do alternative treatments that she knows as a young adult she might not readily consent to (such as stem cell therapy). Then she reminded us, “Parents are so busy taking their children away from life to do therapy instead of living life. Remember it’s important to just enjoy life.” Amen.
Earlier this month I also attended and Epilepsy Conference held by Toronto Epilepsy Foundation. I will write a separate post about this conference.