My name is Donnie Brainard and Vikki is my incredible partner and longtime Conductive Educator for my Daughter India.  

I was reading Vikki's post on this subject and felt compelled to make a short statement.

My daughter is 11 years old, has CP. She can use one arm and communicate via numerous methods.  Basically, she's pretty intense but doing VERY well.  I've done everything I could for her over the past 11 years.  I put everything I could into her care to the tune of over a million dollars.  I wasn't given this money; I worked my butt off for it and was proud and eager to put every penny into her.  We've done almost everything you can imagine for India.  In the early days, it was my philosophy to provide everything, even if it wasn't proven or was "way out there".  I did this so that when my life came to an end, I'd know that I had done everything possible for her.  I often compare a dedicated parent of a CP child to Liam Neeson in the final scene of Schindler's list.  He's surrounded by the hundreds of Jews he's saved but yet he's crying while grabbing his jewelry and saying "this gold would have saved more lives” and he breaks down crying..  A dedicated CP parent will do anything for their child, to the last penny or breath.  But I now know, it’s not about that, it’s about being focused and smart in all your decisions.

Now that I've spent a fortune, tried everything and traveled countless miles to multiple countries to help my daughter, I'm a bit wiser.  I feel it's my duty to convey to the new CP parent some critically important advice.

Vikki is correct about the current state of stem cell; it's not there yet.  There are also mountains of data confirming this.  Worse yet, it can seriously harm your child and pocketbook in numerous ways.

Hyperbaric is also "questionable" in its results, especially when compared with the cost.  I've never seen or heard of it hurting a child physically but I have seen it bankrupt or put massive financial strain on families.  I've personally spent tens of thousands on this with no results and have never seen any real success as a direct result.

The magnetic therapy is also grossly expensive, I'm guilty of providing the owner of the center we went to with enough money to buy a home via the fees for the treatment.  Again, no tangible results.

I've listed stem cell, hyperbaric and magnetic therapy, specifically, because the ultimate harm comes from the time and money wasted.   Our children have very small windows of opportunity and when we don't take advantage of these windows or use the time ineffectively, the results can be devastating and heartbreaking.

Before using the time, energy and money for these types of treatments, stop, take a deep breath and do a little homework.  Of all the things out there for our children, there are only a few that will make a difference.  A few of these are intensive physiotherapy at centers such as Euro-Peds in Pontiac Michigan.  The results coming out of this center are breathtaking.  The grand daddy of them all is Conductive Education and I highly recommend everybody pursue this above all else.  Conductive Education has helped more CP children and families than anything ever.  And the magic of it is that you, as a parent, can do it at home once you’ve understood your role.  There are other good “add on” therapies/activities but the Conductive Education and Physiotherapy are hands down the cream of the crop.

Please understand that I have no stake in what you do with your child other than a deep desire to help.  I’m just a father who’s “been there and done that”.  I hope my words will  get people on the right path ASAP.

I’m always willing to talk to anybody and share my “experience, strength and hope”.

Donnie@apg-lc.com

I'm Susan Stephens and a grandmother of a 6 year old with cerebral palsy and  mild autism.   Early on I too wanted to get anything and everything to "fix" Garrett's problems.   I just felt that if we worked long enough and hard enough it would go away.  I think that's our basic instinct as mother's and grandmothers.. we fix things.  Although we haven't tried stem cell, which it's not my decision to make, that would be his parents decision, I don't see it on the radar right now. 

What I have experienced is the overwhelming difference hyperbaric treatments have done for him.   We went last year very skeptical to give it a try.  The tone in his legs was dramatically less after the 6th treatment.  The morning stretch was as if he had been walking all day.  Also he was able to walk flat footed without his braces.    The improvements over time have been just short of incredible.   We now have a soft chamber at home for him.   On the days that he has conjestion and is not able to go in the chamber the difference is very noticable.

Hyperbaric does NOT cure him.. what we have seen is that it does help the symptoms of cerebral palsy.  The strong tone in his legs, the night leg cramps and inflamation.    Mayci Shea Hogg was having seizures every minute 24 hours a day.. for 6 years.   After her first HBOT treatment 1 1/2 years ago she has been seizure FREE.   Why?  I don't know, I just know that to be a fact.  Not a story I read on the internet, but someone that I know.

We also have known children that do not experience any change.   It goes back to the fact that every child is different not everyone will experience the improvements that Garrett has or Mayci Shea, and there are those that have experienced more that Garrett has.

Garrett's parents have taken on the atitude that if it will improve the quality of his life they will try it,  if it makes sense.  They no longer rush into anything.   On a regular schedule Garrett get Intensive PT with the therasuit and HBOT.  For Garrett this is giving him sucess and he is reaching the goals they've set for him.  He is a very happy young man.  And as his "nana'  very handsome and adorable!

I guess for me it's like anything else in life, everyone has to decide for themselves what is best.  My advice is to not rush into anything, do your homework.. but most importantly pray about your decision.

Susan,

I appreciate your input and that you shared Garrett's story and your experiences with us. If Garrett has improved that's a fantastic thing and I have no reason to question the validity of anything you're saying.

On the other hand, I'm going to share some thoughts on this matter, because I think it needs to be clarified that there are a number of other reasons that can explain what you experienced (that Garrett and other children improved after HBOT), than the explanation that first comes to mind: HBOT works. I detail these reasons below.

The muscle tone in children with cerebral palsy may change all the time. In the case of my little step daughter it is always very intense in the morning when she wakes up, and usually improves later. If she stays in the same position for a long time, it gets worse, and if she moves a lot, it gets better, but not always. There are days when she is just very stiff no matter what. When I turn the AC off and the room gets really hot, her tone usually improves and there may be other factors I didn't realize and therefore I'm not considering yet. I found intense muscle tone changes in the other 100s of children I've worked with, too. It seems that muscle tone changes in children with spastic tone are natural and inevitable, or al least not all reasons are clear why they happen, and can differ by individual. You found that Garrett's tone improves after the HBOT treatment, but we really don't know what the other factors may be in the cause of this change. While your experience of the change is true and valid, the reason you attribute to the change may be invalid.

When someone doesn't take into account natural and inevitble fluctuations of things when ascribing causes to them, they commit a logical fallacy called "regressive fallacy".  Many people are led to believe the casual effectiveness of worthless remedies because of the regressive fallacy. I quoted from a dictionary of logical fallacies, which you will find here: http://www.skepdic.com/regressive.html

This leads us to other logical fallacies like the "pragmatic fallacy" which means that one argues that something is true because "it works", where "works" is a perception. This is common in alternative health claims and is often based on "post hoc reasoning", which is a fallacy based upon the mistaken notion that simply because one thing happens after another, the first event was a cause of the second event. ("I wore a skirt for the first time in my adult life yesterday, and I was diagnosed with cancer on the same day.) Or, similar, assuming that correlation equals causation: ( Almost  everybody who has breast cancer wears skirts. Wearing skirts causes cancer".) (Analogy by Stephen Barrett.)

There is a lot more namely "wishful thinking" which is interpreting facts, reports, events, perceptions, etc., according to what one would like to be the case rather than according to the actual evidence. http://www.skepdic.com/wishfulthinking.html, taking "anecdotal evidence" as absolute evidence ("it worked for me, for x, so it must work), "confirmation bias" whereby one tends to notice and to look for what confirms one's beliefs, and to ignore, not look for, or undervalue the relevance of what contradicts one's beliefs, and, of course, "communal reinforcement" which is the process by which a claim becomes a strong belief through repeated assertion by members of a community. http://www.skepdic.com/comreinf.html.

These errors of thinking are so natural that they happen in anyone's head, yours, mine, and the smartest scientist's. The scientists actually realized that these are happening, and they also realized that they're not immune to them. (There are a lot more of these errors, and they can totally change the outcome of any research. ) Therefore, scientists worked out a number of ways of how to reduce the occurrence of these errors, and they came up with blind, randomized, controlled trials. So what happens when we subject the HBOT to a blind, randomized contolled trial? We find that it doesn't work. In this large trial http://www3.interscience.wiley.com/journal/120135846/abstract?CRETRY=1&SRETRY=0, they assigned the cp patients into two groups, one got HBOT, and the other got placebo (40 treatments). Nobody got any other treatment. At the end of the trial, both groups improved significantly, and there was no difference between the two groups. This means that both groups improved the same over the course of treatment, regardless if they were sitting in a HBO chamber, or in a chamber with nice fresh air.

Why did the patients in both group improve? We don't know. Children just tend to improve, that's what they're like.

So, the alternative explanations for why the HBOT worked for Garrett are the following: 1. His tone would often, naturally change anyway, and you don't take it into account (regressive fallacy), or you guys note when positive changes occur in his tone when this happens after the treatment, and don't note when it happens at other times (confirmation bias), or his tone is truly, significantly better after the treatment but it has nothing to do with the treatment (post hoc reasoning, like "skirt wearing caused cancer"). 2. Parallel with the HBOT, he also got an other treatment, that worked, and the improvement is mistakenly attributed to HBOT. Did Garrett participate in physiotherapy (with or without the therasuit, it doesn't matter) during his HBOT period? Physiotherapy works... 

One may ask why is it so important to point all these out? Sure HBOT doesn't do any harm, and if someone likes it, why not?

It's because other people who have children with cerebral palsy may mistake your anecdotal evidence for actual evidence, and this treatment costs a lot of money, and is a waste of time.  The same amount of money and time could be spent on legitimate therapies, education, great toys, vacations, accessible vans, and there's a long, long list what else. HBOT can also cause side effects like middle ear barotrauma.

Just here at the very end, I think I need to mention that HBOT works for decompression sickness, carbon monoxide poisoning and a few more conditions, but unfortunately, not for cerebral palsy.

Our journey is what it is.   I have no first hand knowledge of all the things you've thrown at me, and I'm sorry that your step-daughter hasn't experienced the sucesses that Garrett has.  What I do know is he is 6 years old, was experiencing on a daily basis painful leg cramping, strong tone and from the first week of HBOT he has had none of these things, over a year now.   When he misses more than 2 days of HBOT it returns noticably.  He will even ask to be stretched to help.   You have every right to your opinion.    I know what I've seen with my own eyes, Garrett knows what he feels in his body.  It wouldn't matter to me if I met 10,000 people that HBOT didn't help.   It helps Garrett, that is what's important to his quality of life and that's enough for me to say that it helps some and others it doesn't.  I don't understand why and don't proclaim to know.    I do know that HBOT and intense PT using the therasuit as a tool is dramatically improving the quality of life for a 6 year old boy named Garrett whom I love very much.   Both will be included is his treatment plan for the foreseeable future.  No one will every convience us of anything different, not studies, articles or links.  We do not need anyone to believe us for us to believe what we know to be the truth.  Even still, I respect your God given right to your opinion and beliefs.  I pray many blessings for you and your step-daughter.  I just realized I didn't address your concern about other parents choosing HBOT because of our story.  This discussion board is for parents to share their journey without challenge.  I'm not attempting to diagnose or suggest treatments of any kind.  If I'm ever asked, my response is always the same. Every parent must do their own research, talk with their physicians, PT, OT therapist and most importantly pray for wisdom.  What may have worked for Garrett may not work for their child.  We've simply shared our journey.  I do not have a crystal ball that I can tell someone what their reality is, nor does anyone else here on earth.   What parents visiting this site need is unconditional acceptance, encouragement and a feeling that they can share their journey with other parents without judgement.

 All,

Normally I don't go further in these discussions than my experience, strength and hope.  In this situation though, I feel I need to point out a couple things and express my feelings on the subsequent posts. 

1. I'm happy and excited to see this page in place, its potential for all is huge.   I was under the impression that everybody was allowed to and encouraged to ask for and give advice.  Responding to the Exceptional Family Administrator’s post that were later removed, there was no judgment or ill intent within my or Viktoria's posts; only open and honest guidance.  I’ve been a parent of a CP child for 11 years, traveled all over the world and tried almost every intervention out there.  I’m very active in the CP community, including USA, Canada and the UK.  I have a lot of experience and strong valid input that I’m willing to share.  Vikki has worked with hundreds of children in 7 countries and she is very good at what she’s doing. Suffice to say, we both have a lot to give.  I can’t speak for Vikki, but for me, it’s absolutely heart-breaking to see families use up such valuable time, money and energy on certain treatments that almost never turn out well in the end.  My message was to use the time well as our children grow fast and CP is not forgiving.  I’m very happy that the child in question is doing so well with HBOT, that’s wonderful.  I only encourage the parents and/or grandparents to consider the therapy and stretching that they also mention as the possible primary beneficial reason.  I encourage this because when the money runs out, the HBOT goes away and valuable time is used up.  When the money runs out, the therapy and stretching remain and ultimately, are what change these beautiful children’s little lives and bodies for the better. It’s time so well used.  Keep doing HBOT, that’s great, just be very mindful of the money spent; can it be better used?  Also the time used, can it be better allocated?  I question this with my own daughter constantly to this day.
2. I can’t express how disappointed I am in the Exceptional Family Administrator who personally responded in a pretty intense and certainly biased manner. It was made very clear that the Exceptional Family Administrator was wanting to control the communication posted.  This isn’t an open forum for parents if this happens.  I understand now that Susan Lewis Stephens is a friend of the Exceptional Family team.  I don’t think that’s a reason to do what was done.  The Exceptional Family Administrator responded twice, then the Exceptional Family Administrator’s posts were deleted and one of them re-appeared verbatim via Susan Lewis Stephens.  As a family who is in the media business, I hope you can try not to do this, allow people to openly and freely share their experience, even if you don’t agree or understand.  The Exceptional Family team, in my opinion, has a huge responsibility to the community by putting this page out there.  Not allowing or influencing dialogue, in a forum as important as this, is not appropriate and can be terribly destructive.  Ultimately, it’s up to you as you own this forum, but I hope you do the right thing.

In the future, please allow open and honest communication without the fear of the Exceptional Family Administration censuring or attempting to modify the dialogue.  If you are so blessed to have Vikki or another top shelf professional with such valuable and massive experience take the time to provide help, then for God’s sake, welcome them with open arms!

Donnie Brainard

Susan, I am deeply sorry if my response upset you or anybody else, as surely that was not my intention.  I have a very lot to say, so much that it would probably fill a book and I may just go ahead with that, some time in the future. However, if my intentions are not very clear right now, I'm going to make an other attempt to clarify them. 
My little step daugher has painful leg cramps, too. She wakes up during the night and cries, pointing on her leg, saying 'owe'. The pain is caused by the spasticity, the increased muscle tone and everything it comes with: shortening of muscles, the shortened muscles pulling on joints, joints not moving as much as they were designed to do so, the synovial fluid drying up from these joints which then form contractures, which over time deform the body... it's a cruel, awful, painful chain. What helps? Warm baths to help relax the muscles, followed by passive stretching (stretching is part of physiotherapy) and then followed by physical activity. In short: Moving helps eliminating problems that are caused by lack of movement. This is what makes all the difference in the world. When there is stretching and there is active moving (a lot), then there is often slow, but steady improvement of overall physical skills. When there is no stretching and active moving, there is a rapid decline, cramps, and pain, and contractures. The human body is the way it is, and the changes in it are going to follow the laws of nature (although when this little girl is in pain, I wish nature made exceptions). This is our journey, and everybody else's who happnes to have a child with increased muscle tone. Some parents are taught this by a professional, some parents work this out by themselves, and some parents just remain confused. (There are a number of other things that help, or contribute.  Botox injections may temporarily reduce the tone so working actively on movements becomes more successful; however, it's not a fix and may not work over and over again. There are also orthopedic surgeries, via which they make small incisions into tendons to reduce the pulling of the shortened muscle. This works, but it sometimes goes wrong.)
Oxygen, magnets, stem cells and the sort, interventions that don't have a reasonable explanation behind them, or worse, they are proven NOT to work, or they simply can't because they're bending nature's laws or describing physical or chemical reactions that simply do not exist (like magnets 'pulling' blood to a certain area of the body or oxygenating blood), are all damaging.  Why? Because such treatments promise to make easy improvement when, in reality, making an improvement in a child with cp is hard. The treatments may make you travel to an other country, spend tens and hundreds of thousands of dollars, spend days, months, years receiving the treatment, and it is all in vain, while what would help and would make a difference stand no chance to get done. The providers of these treatments take advantage of the fact that parents of disabled children would do anything, absolutely ANYTHING that promises to help their child, they won't even think, they can't, they just want to help their child. They are very easy target. As Stephen Barrett put it on his great website: "It's open season declared to the sick and the desperate. It represents a return to the law of the jungle in which the strong feed upon the weak".
So what are my intentions and why am I chosing a channel now and again to try and educate parents on how to avoid scam therapies? Because IT IS BREAKING MY HEART watching these happen, the same thing, over, and over, and over again. It's always the same: child is diagnosed with cp-parents are trying to provide the best possible-get sucked in by scam therapy-travel to the moon and back, spend all the money they have-the parents don't learn how to do the stretches properly-the parents don't learn how to encourage their child to move properly-cp stays and it gets worse due to inactivity-child grows up, with deformities-parents are left burnt out. I know some people, who used to be children with cp, who are now in their 30s or 20s, I watched some of them grow and change, I watched their parents change, and all of those families went through exactly the same. If the children are accepted to be who they are and every reasonable intervention is done to avoid pain and deformities, if they are encouraged to learn and move, be active and independent, they're going to do well. Otherwise, they're not going to do well (as no child is going to do well without encouragement to learn and move and be active and independent). This is all a lot of hard work, but a rewarding one. In the ideal world there is a lot of room for celebration of achievements that are result of wise parenting and hard work, and there's no room for scam therapies that demean us all.