Tuesday, April 12, 2016

In The Lead / Cutting Edge / Leading the Pack

In a lot of ways life tends to be a race or a competition. Not saying that it should be, it just sort of ends up that way. We often strive to be 'In the Lead' or 'Leading the Pack'. Who wouldn't want to be on the cutting edge. It sounds like the perfect place to be.

I am thankful for those who lead the pack. In Prader Willi Syndrome, someone led the way by pushing for and administering gh to their child. Over time, people were willing to push the envelope and start gh even younger. There were no guarantees even if it was all based on the best possible science. Those pioneers proved to be correct and the administration of gh is now standard of care for PWS.

Every clinical trial that comes down the pike requires people to take a step in faith as well as science. Science says if we give a person ___ then it will improve ___. But. Somebody has to be the first to try it and learn as they go how to best dose and avoid side effects and, hopefully, prove it is safe.

Like it or not, Ayden Jane tends to be toward the front of the pack. I tend to seek out and try new things as long as the science makes sense and I can be assured of the safety. She was the youngest and one of the first to go high fat/low carb. We figured it out as we went. We didn't even know that she was in ketosis for years, just liked how her body and brain responded and let Ayden Jane show us the way. So much science to explain it all has caught up and thankfully, we were pretty spot on as it turns out in the end.

We began using B12 as it was just an idea. I remember asking my pediatrician about it and him telling me he could assure me it would not hurt her but he did not expect it to make much of a difference. Oh what a difference it made!

I know there were other things along the way, especially before Ayden Jane was two and we found Dr. Miller, but this MTHFR gene and folate thing leave me feeling the same stress as those decisions in her early years. Read, reread, think, ask questions ... Decide on a plan and a supplement - don't forget to research the source and quality of the one you settle on. Now take your best shot at dosing. Then watch the ticking time bomb. Take great notes along the way for the next person addressing the same issue. Try to interpret what you see and adjust timing, dosing .... all over a fairly long time since each change needs a fair chance of at least a few days or week.

Rinse, repeat... It's feels like being on high alert. Sometimes I really wish there was a manual that would just tell me how to keep Ayden Jane operating at optimum levels. Until then, I guess we will continue writing her manual as we go. Maybe it will help the rest of the pack one day.

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