I am giddy. We have a RESEARCHER!!!
A real live MEDICAL RESEARCHER!!! And he will be supervising THREE (count 'em - THREE!) fellows who will begin looking at the data we have been collecting on the children with neuromuscular conditions (including cerebral palsy) since June of this year.
I am so happy, I could cry. We now have 92 children seeing improvement in at least two of the eight categories we are tracking (increased appetite, weight/length gain, bowel change, tone/strength, cognitive, speech/communication, energy and sensory), which is giving us an 88% "success rate", a 100% improvement rate for children with Sensory Processing Issues (SPD) by week six, incuding an autism only subset, and 84% "Failure to Thrive" children gaining healthy muscular weight with 76% moving from "less than 5%" on the CDC growth charts to "10% or greater" within 90 days.
The project was/is about generating individual case study data to determine if there is a justification for further research, AND THERE IS!!!
Now this work can get the proper, rigorous scientific investigation it requires!
He has warned me that he will be the most skeptical person out there and I told him I am TOTALLY good with that because this *SHOULD* be investigated that way!!! And his credentials are IMPECCABLE -he is a published researcher, faculty at a respected teaching university, and former member of the United Cerebral Palsy Research Foundation Medical Advisory Board.
I am waiting on the email from his secretary to schedule the meeting to go over the data we have gathered so far.
I Am So Happy!!!
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make me look foolish. God bless that mother, and thank you so much for sharing that story!
And may the outcome be all that you hope for. 
I can't stop smiling. Plus the moms like to make me cry. We have a Facebook Parent Group, and one was reporting her son "standing ON the couch" (not Next To, but ON), which was all about an increase in "core strength and balance." The parents are really the ones in charge; I just document, analyze and try to figure out what it all means! 
When I spoke with him a few months ago, he started very skeptical, but because I was able to speak in numbers/statistics, edited with some amazing anecdotal stories, he listened. He really is a research guy, and is totally willing to have "everything he knows" turned upside down in the pursuit of Truth.
Plus, when I told him about the children changing GMFCS categories, that kind of really blew him away. Also, the clonus and pronation issues resolving in a matter of weeks -- but he still could have decided he didn't want to pay attention.
But he is. He is!!!!!
And if I am wrong, then so be it - let the data speak for itself.
(But I'm not.)
partly due to limited resources, and partly because we aren't sure the approach will help older people because of growth plate issues and long term effects of deficiency. Several adults have contacted me and I have provided them the information they need, but I haven't heard back from any of them. I have hope.
And thank you.
Thank you for such kind words. I am hoping and praying we can prevent or treat this early enough to positively impact lives.
We have a large number of "Ukrainian adoption" children in our project who are responding *extremely quickly*; the mothers have explained the "orphan house" concept, and the low status the handicapped have over there. If this proves out the way I expect it to, I know what the next impossible task I will be taking on will entail....
But that battle belongs to another day. Today is about CELEBRATING!!!!
when she was studying for her LPN (before they changed the rules a long time ago).
She has told me stories. Thank you for seeing "them" and not their condition.
for you!
And good on your wife!
The SPD was a complete shocker, but our Child #2 had it as well as severe hypotonia, and the change was so dramatic that once the mom started jumping up and down about it (lol!) we began tracking it. Word quickly spread and we ended up with an "autism only, with SPD" subset, too.
100% improvement in the SPD by week six for all of them. For our purposes, we now view SPD as a "level one" neuromuscular issue (just because we have to categorize them somehow). It doesn't "cure" autism, but the SPD symptoms - issues with tags on clothing, bursting textures, loud noises, over-stimulation in busy environments, all with "meltdowns" - all start to resolve pretty consistently by around week six. The parents are ecstatic because it is such a life changer; two tear filled emails about Thanksgiving gatherings last week. Sigh.
The issues we are tracking are part of the process that seem to be impacting the recovery (specifically, decrease in hypo-and-hypertonic symptoms). We have found that for those children it doesn't help (12% - sigh), if they don't see changes in appetite and bowels (for those with severe constipation, which is very common in this population), then they don't get the weight/height gain, or the increase in strength/decrease in hypo-and-hyperspastic symptoms). The changes in energy/stamina, speech/communication, and cognitive all began as parent reported issues as well. It has been *very* exciting.
And our protocol is very well documented on our website. (Many people get upset about it, and I don't want to contaminate this thread with an argument about efficacy.)
We Have A RESEARCHER!!!!
One of my NIH contacts told me to write a letter to one of the Pediatric journals when we were able to repeat the results the first two "surprise!" children had with the first five kids - early 100%, didn't last, sigh - but after talking with the staff there, they really didn't a "spot" for this, especially because we are still so early in the investigation.
One of the most exciting things is how quickly the changes happen; we usually know within two months if this is going to work, so maybe it won't take as long...?
Another thing I have been concerned about is how they will design a study where placebo children might end up stuck in wheelchairs, but I have been assured by friends in the field that this type of moral issue is one they are familiar with, and they can compensate accordingly so they can determine if the protocol is actually effective (as opposed to the "lucky" diagnosis, or the "momma, didn't you know your kid didn't need his wheel chair when you were here three months ago?"
.
It is a very good day.
Maybe we could even get some insight into my "not helping" subset.
Ah, bliss.
all we now know and understand, while imagination embraces the entire world, and all there ever will be to know and understand.” (Albert Einstein)
And my all time favorite:
"Behind every advance of the human race is a germ of creation growing in the mind of some lone individual. An individual whose dreams waken him in the night while others lie contentedly asleep." Crawford H. Greenewalt
Dream on IdaBriggs, dream on
Congratulations! Enjoy your victory! You are working on behalf of those who need you!
Julie
I am STILL happy.
Last edited Sat Dec 1, 2012, 01:56 AM - Edit history (1)
