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Thu Nov 29, 2012, 12:42 PM

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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Arrow 41 replies Author Time Post
Reply I am giddy. We have a RESEARCHER!!! (Original post)
IdaBriggs Nov 2012 OP
1StrongBlackMan Nov 2012 #1
hollysmom Nov 2012 #2
PDJane Nov 2012 #3
libodem Nov 2012 #4
IdaBriggs Nov 2012 #9
libodem Nov 2012 #23
jody Nov 2012 #34
IdaBriggs Nov 2012 #35
msanthrope Nov 2012 #5
Sekhmets Daughter Nov 2012 #6
IdaBriggs Nov 2012 #11
Sekhmets Daughter Nov 2012 #13
IdaBriggs Nov 2012 #15
Sekhmets Daughter Nov 2012 #16
IdaBriggs Nov 2012 #18
Sekhmets Daughter Nov 2012 #21
libodem Nov 2012 #24
IdaBriggs Nov 2012 #36
libodem Nov 2012 #37
Science Geek Nov 2012 #7
OneGrassRoot Nov 2012 #8
bigtree Nov 2012 #10
IdaBriggs Nov 2012 #19
AAO Nov 2012 #12
libdem4life Nov 2012 #14
IdaBriggs Nov 2012 #17
libdem4life Nov 2012 #20
jody Nov 2012 #22
IdaBriggs Nov 2012 #28
jody Nov 2012 #29
IdaBriggs Nov 2012 #30
jody Nov 2012 #31
glinda Nov 2012 #25
greymattermom Nov 2012 #26
Auntie Bush Nov 2012 #27
JNelson6563 Nov 2012 #32
Liberal_in_LA Nov 2012 #33
IdaBriggs Nov 2012 #38
Little Star Nov 2012 #39
CreekDog Nov 2012 #40
Ptah Nov 2012 #41

Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 12:46 PM

1. Well Alright ...

Keep us posted.

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 12:47 PM

2. congratulations.

It sounds like some hard work has really paid off, it is nice to hear a story when the good are rewarded.

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 12:53 PM

3. That's great!! Good news, indeed!

Now, go convince the man and his minions !!

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 01:09 PM

4. Very cool

I care about the individual welfare of all these unfortunate children. I hope advances are made in helping them thrive and have a quality of life that is meaningful.

I'm able to compartmentalize the value and worth intrinsic to being a human being, no matter what challenges with they are brought into the world with,
against some if the common 'words' for intellectual deficit. I loved my 'kids'. And cared for them tenderly.
I would never even think of any of those 'words' around a person with such a disability. Those words are not what THEY are, at all.

I don't think any of those words should be used against any one but, Republicans because they are born with a fully functioning mind and choose to be limited, slow to progress, and fail to mature, be ignorant on purpose, they embody what most consider slurs against the subgeneticly endowed. Republicans, are those words not my kids.

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Response to libodem (Reply #4)

Thu Nov 29, 2012, 01:26 PM

9. Thank you.

I don't understand what you mean fully, but it sounds like you work(ed?) with special needs children?

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Response to IdaBriggs (Reply #9)

Thu Nov 29, 2012, 02:48 PM

23. Before I became a nurse

I worked at state institutions. I took care of severely and profoundly disabled kids. Total care. Crib babies. Loved them very much. They were all worth while and deserving of all the dignity and respect I could muster.

Each one had personality and individuality. Each one a valuable and lovable human being. All most all of them capable of learning some type of skill through training with rewards. Behavior modification. Even to hold a cup or spoon and scoop food was a big deal.

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Response to libodem (Reply #23)

Thu Nov 29, 2012, 03:58 PM

34. Have a dear friend whose son passed away recently at the age of 54.

 

He had been in a coma and confined to a crib since birth and she cared for him all those years and loved him as any child deserves to be loved.

At his funeral, standing by his casket, holding my dear friends hand she said to me, "You probably wonder why I dressed Buddy in jogging clothes to be buried?"

She then said "Buddy, you can now run all over Heaven so run Buddy, Run!"

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Response to jody (Reply #34)

Thu Nov 29, 2012, 04:02 PM

35. I am trying to work here. Tears streaming down my face

make me look foolish. God bless that mother, and thank you so much for sharing that story!

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 01:10 PM

5. Congratulations!!!! nt

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 01:13 PM

6. Congratulations...

And may the outcome be all that you hope for.

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Response to Sekhmets Daughter (Reply #6)

Thu Nov 29, 2012, 01:36 PM

11. Thank you.

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.)

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Response to IdaBriggs (Reply #11)

Thu Nov 29, 2012, 01:43 PM

13. An high school friend of my

ex-husband has MS...he has lived with the disease of over 35 years. When I was a child we had a neighbor whose son had Cerebral Palsy.
They are such devastating diseases, it would indeed be great news if your findings are verified! Please keep us posted.

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Response to Sekhmets Daughter (Reply #13)

Thu Nov 29, 2012, 01:48 PM

15. We have only been working with children twelve and under

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.

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Response to IdaBriggs (Reply #15)

Thu Nov 29, 2012, 01:57 PM

16. No, IdaBriggs,

Thank you for your hard work and huge heart. Randy is now 67, unable to move anything but one finger and confined to a bed. No one ever expected that he would still be alive. But if your efforts lead to no more future Randies, that would be a wonderful gift and legacy.

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Response to Sekhmets Daughter (Reply #16)

Thu Nov 29, 2012, 02:08 PM

18. You are going to make me cry.

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!!!!

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Response to IdaBriggs (Reply #18)

Thu Nov 29, 2012, 02:16 PM

21. NO, no, no

tears...not on a day like today!

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Response to IdaBriggs (Reply #18)

Thu Nov 29, 2012, 02:57 PM

24. Ahhhhh

That warms my heart. Beautiful.How good to serve the Ukrainian children.

I've had a penchant for the children with CP, because they are so smart. Generally they understand whatever you are saying to them. Lots of expressive aphasia, they can't talk or it is so unintelligible it is difficult to understand. You learn to anticipate their needs.

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Response to libodem (Reply #24)

Thu Nov 29, 2012, 04:04 PM

36. My mother worked in the state institutions a long time ago

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.

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Response to IdaBriggs (Reply #36)

Thu Nov 29, 2012, 05:59 PM

37. You learn to see past the condition

And to the being inhabiting, a shell that houses a spirit and soul.

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 01:23 PM

7. Fantastic!

Excellent!

As you might guess, I love seeing science used to improve people's lives.

Thanks for working for humanity!

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 01:24 PM

8. Congratulations!!!



for you!

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 01:33 PM

10. fantastic!

I'm thinking this is a comprehensive approach; bringing a variety of specialists together and coordinating their efforts with the individuals. That's the approach that had success when my wife was working with children about 15 years ago. It was a fight to get the school system to accept that they couldn't just compartmentalize the treatment and miser out the services of one specialist or the other. There needs to be a comprehensive approach with specialists working as a team. Unfortunately, these budgets struggled to reflect that need and the marked successes that came from investing in that approach.

Anyway, good news on the successes, and great news on the researcher and the fellows!

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Response to bigtree (Reply #10)

Thu Nov 29, 2012, 02:09 PM

19. Agreed! And thank you!

And good on your wife!

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 01:37 PM

12. Wow! I'm pulling for you Ida!

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 01:44 PM

14. What an amazing reach across diagnoses...is it all behavioral or does it include medications?

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Response to libdem4life (Reply #14)

Thu Nov 29, 2012, 02:02 PM

17. They are all neuromuscular issues.

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!!!!

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Response to IdaBriggs (Reply #17)

Thu Nov 29, 2012, 02:11 PM

20. Thank you...didn't notice the website address in your sig line. Brought a few tears to this old

teacher's eyes. Blessings.

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 02:27 PM

22. Outstanding. Next step is to have his report published in a peer-reviewed credible medical journal.

 

Hope that happens quickly.

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Response to jody (Reply #22)

Thu Nov 29, 2012, 03:19 PM

28. Me too! Me too!

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.

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Response to IdaBriggs (Reply #28)

Thu Nov 29, 2012, 03:34 PM

29. OK but as a prelim to publication the research lead could present interim results at a conference

 

hosted by reputable professional associations. Those could be local or regional and not necessarily national.

I do that regularly and never cease to be amazed at the truly helpful, critical questions that arise from those who attend presentations.

Good luck as you participate fully in the process know as the scientific method.

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Response to jody (Reply #29)

Thu Nov 29, 2012, 03:36 PM

30. That would be awesome, wouldn't it?

Maybe we could even get some insight into my "not helping" subset.

Ah, bliss.

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Response to IdaBriggs (Reply #30)

Thu Nov 29, 2012, 03:43 PM

31. Never be afraid to dream “Imagination is more important than knowledge. For knowledge is limited to

 

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

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 03:03 PM

25. Congratulations. Great cause.

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 03:07 PM

26. tai kwan do

I have a friend with CP who is a PhD CP researcher at Columbia in New York. She started doing karate and has reported improved motor function.

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 03:16 PM

27. I'm happy for you and all the children that will be halped. Congratulations!

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 03:43 PM

32. Bravo!!

Congratulations! Enjoy your victory! You are working on behalf of those who need you!


Julie

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 03:44 PM

33. congrats

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 08:13 PM

38. Kicking for the Evening Crowd.

I am STILL happy.

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Response to IdaBriggs (Original post)

Thu Nov 29, 2012, 09:07 PM

39. k&r

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Response to IdaBriggs (Original post)

Fri Nov 30, 2012, 04:00 PM

40. Did you hire Dr. Sylvia Browne?

Last edited Sat Dec 1, 2012, 12:56 AM - Edit history (1)

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Response to IdaBriggs (Original post)

Fri Nov 30, 2012, 10:51 PM

41. In three or four sentences, would you please explain what is being investigated?

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