I mentioned briefly last week that I had the opportunity to attend a cerebral palsy symposium at Holland Bloorview. To say that it was completely overwhelming with information would be an understatement! I thought I could give you all a readers digest version here. If you need/want to read the detailed post, please head over to my personal blog- Beautiful Side of Hectic.
- We began the morning with introductions to the topic at hand- stem cell research.
- The Director of NeuroDevNet spoke about how they are studying the childs brain development in both clinical and basic perspectives.
- Information on a Cerebral Palsy registry. Collecting information from a LARGE number of people to begin to study Cerebral Palsy a little bit better.
- Next was using animal models to better understand childhood CP. As much as I hate testing on animals, I would like to thank mama mouse for giving her baby up for science.
- Jillian’s doctor talked about constraint therapy in children with hemiplegic CP. Basically, a brace or cast is placed over the child’s GOOD arm and then the child is asked to do everything with their affected side.
- Explaining a new(ish) therapy used in hemiplegic children- TMS. TMS stands for- Transcranial magnetic stimulation.
- We heard about perinatal stroke and how they are much more common then people know. 1 in 1000 live births will have a perinatal stroke.
- Dr. M. Fehlings presented a keynote address. Do stem cells repair and regenerate of the brain stem cells in Cerebral Palsy.
- Found out that there are NINE different types of stem cells.
- And finally a family forum where the parents could ask questions.
Certain things were reiterated all day. How important family are for the quality of care they’re child receives. After all, we’re the ones who know our child best. Also, we need to stop using the phrase “JUST” a parent. I’m VERY guilty of this! Whenever someone asks my opinion, I’ll let them know that I’m JUST a mom. We were also warned against pseudo therapies. As most parents, I’m trying to do everything in my power to get Jillian to succeed. Ever since I started researching, I noticed a LOT of “therapy” that just didn’t seem like it would work.
To be honest with you, this whole journey with Holland Bloorview is absolutely wonderful. They seem to know how to cater to the whole family, not just the patient. Parents voices are heard and that makes everyone happy. And pretty impressive that Jillian’s doctor put this all together in 3 months. AND that everyone seems to be so willing to have parents sitting in on things.