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Gender: Female
Hometown: South East Michigan
Home country: United States
Member since: Tue Jul 27, 2004, 01:19 PM
Number of posts: 10,559

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I am the Person Who Posted (thread was locked when I returned)

I am the (volunteer) Executive Director for the Preemie Growth Project. We just completed a study on the effects of micro-nutrient supplementation on premature babies with a 100% efficacy/success rate. You are welcome to continue to pay attention to the website, although I am not soliciting your interest.) Here is the background for the post:

One of the babies in our study was born three months prematurely. At 9 months actual/6 months adjusted, the baby weighed 12 pounds and was diagnosed with Cerebral Palsy on June 20, 2011. The mother was told her son would spend the rest of his life in a wheel chair. She joined the study on June 21, 2011. Ten weeks later, the boy weighed 22 pounds, and took his first steps.

The weight gain was normal for the study. The baby was the "worst" health wise, so the results were remarkable. However, there may have been a mis-diagnosis, so while it was noted (and bragged about), its just one of the remarkable things from the study.

Approximately four-to-six weeks ago, I was speaking with some new neighbors. They have a 9 year old girl who was born prematurely. At birth, she weighed 1 pound, 11 ounces. You can imagine the health challenges she has faced, among them a diagnosis of Cerebral Palsy. She has undergone countless surgeries, etc.

As a *neighborly* thing, I gave her family a bottle of the micro-nutrients we were using in the preemie study. (It is available over the counter, and there are dozens of similar brands out there, so please don't try to accuse me of peddling the stuff.) It was a friendly thing, and it couldn't hurt.

Friday night (June 8, 2012), I stopped by to visit, and was completely stunned: the child's CP symptoms are VISIBLY REVERSING. She is developing muscle tone, has gained an average of one pound of weight per week, has fine motor control, and a host of other small things that a CP parent/patient would understand. *I* am not a CP parent; I am a "preemie" expert, and I did NOT expect this type of result, let alone this quickly. *IF* this can be repeated - well, think it through, and see if your head starts exploding, because *MINE* did!!! I did not sleep a wink all Friday night. Saturday morning, I made some phone calls/left messages with some of the folks I know from my work with the preemie babies, but I won't be able to talk to anyone until business Monday.

So, let us review: our charter is for PREEMIE babies, not CP CHILDREN or ADULTS. The neighbor girl isn't even *IN* our study, so we can't even pin point the day her family started giving her the compounds, or document the change rate. There is no way to cost justify a study with "two" children, especially when the baby may have simply been a mis-diagnosis (despite the classic CP symptoms). Both children have physicians at Detroit Children's; I have been invited by the nine year old's family to go with them on July 6, 2012.

If we see the same thing as we have seen with the preemies, the girl will continue to improve over the next several months. The spasticity of her muscles is changing into ACTUAL muscles with "tone" (I will be doing a small video interview with her and her family at 7:00 p.m. EST, but won't be posting it without the family's permission.)

So, here is where I am at: the "holes" in the brains (aka "brain damage" may simply be a side effect, not a cause of CP symptoms, and if it is a micro-nutrient deficiency issue, instead of a life long problem, it may be correctable, reversible, and hopefully, obsolete. The fact that neurologists missed this is most likely because they haven't been reading Gastroenterology textbooks, but I am *not* looking forward to explaining to them that they have spent their lives getting it wrong!!! Also, we don't know if the long term effects of the micro-nutrient deficiency (*IF* that is what it is) are reversible in adults; I repeat, I did NOT expect a 9 year old to begin "reversing."

BUT *I* am not a CP expert. I needed to find some people with a dog in the fight. I've got a couple of people now, and I am now taking the discussion off-line with them.

No promises are being given. Two small miracles do not constitute a cure. I am not going to make any money off of this, nor will my organization. On the contrary, a lot of people will *LOSE* money if CP becomes a reversible malady with six months of inexpensive supplementation, which means not good things for anyone trying to bring it up for discussion.

Furthermore, I did not expect the post to generate such controversy. I made it at 9:00 a.m., and several hours later, no one had replied. I made an assumption it had sunk to oblivion, double checked it this morning, and discovered it had been locked, with me being maligned as all kinds of scum.

I reject the characterizations, and stand ready to defend myself in this thread. I realize the "hope" may seem cruel, but I stand by what I am reporting, and am grateful to the families who are stepping up to find out if this is a "repeatable miracle" or not.

If you don't see a quick reply, its because I am running late for my appointment with the neighbor girl. This is an amazing thing, and I am thrilled about it.

I have been having a private discussion with another DU'er, and I repeat the comment I made to her: either I am wrong, or the folks who haven't been able to find a "cure" for the last fifty years are. For the sake of thousands, I'm hoping I am the one in the right. But its going to take some other people's investigation to help find out. I can only pray this is the answer so many people have been searching for - what are the odds, eh? What are the odds a little girl with CP would move two houses down from the Preemie Lady?

Need to Connect with Parents of Children with Cerebral Palsy ASAP

Apologies for not posting in a very long time; its been a very busy time.

I need to connect with any parents of children with Cerebral Palsy; I am specifically looking for parents who are willing to try a non-invasive, no-risk "cure" for cerebral palsy without physician supervision as a supplement to whatever therapies they are currently undergoing.

I apologize, but I am not sure if this will work for adults, but it looks like CP *may* be reversible for children. Unfortunately, the sample size is too small to make any guarantees - one child was nine months old, and it *may* have been a simple misdiagnosis, but the other is 9 years old, and the change in four to six weeks is frankly incredible. (I would not have expected these results this quickly; she is standing unassisted for twenty minutes, has gained six pounds of muscle weight, and has gained fine motor control, among other things.)

Please do not mistake this message for a promise, but if I am right (and I am), CP is NOT an incurable disease, but a correctable, reversable deficiency. Some of the side effects may not be fixable for patients who have suffered the deficiency long term however, so the younger, the better. And I could be wrong. (But I don't think I am - just how on earth are we going to get this to the people who need it, if it works?)

Not a cure for cancer, not a cure-all, but a piece of the puzzle. If you know of someone who might be interested in learning more, please PM me to discuss.

Ida Briggs
Preemie Growth Project
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