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jianhofa · 03-01-2010, 12:45 PM

Hello, everyone,

My son was diagnosed with CP last week. It doesn't surprise my wife and me since we have been watching him since his difficult birth (Mom's uterus ruptured).

Now diagnosis was done, we are looking for treatment options. In addition to conventional therapy (PT,OT, ...), we are also thinking about stem cell therapy.

I want to learn from people here if you have any experiences with it or any opinions about it. We are devastated, and we want to make sure any therapy we are considering is safe at least ( cost and effectiveness aside)

I would really appreciate it if I can hear from you.

Thanks,

jianhofa

gracie10 · 03-02-2010, 07:38 PM

Jianhofa,

There are medical centers (particularly those connected to universities) that are doing participant research studies, and there are clinics out there(particularly outside of the US) already offering treatments. What may be available to you and your son is very much dependent on where you are located.

The extent to which the options available are safe is another much more complicated matter. Different countries vary in the extent to which they allow the use of stem cells and also to what degree they regulate theraputic use of them etc. They also may differ in their methodology, for example, whether they rely on saved cord blood or if they use a live extraction technique. These two approaches obviously pose different degrees of risk on many levels.

Several institutions in the US have reseach study participant programs that have resulted in individual or small group write-ups surrounding outcome. But like everything that is new and undergoing research you will find conflicting and inconclusive results. Like most treatments and new technologies, the real benefit/risk scenario is something that will not have concrete evidentiary proof for many years to come. A great deal of the information surrounding studies, outcomes, unforseen complications etc, are exclusively available through the professional journals put out for clinicians. Most of the trustworthy information I have gathered concerning my own options as an adult with CP comes from professional periodicals and clinical study publications that I would never find in a standard library or my doctor's waiting room. Unfortunately, every new leap forward needs a guinea pig generation.

I am not sure that I have given you anything you were hoping for in my answer but, I do hope it will encourage you to look closely at the information out there from every angle and use it to ensure that the practicioners you choose are always working toward goals that are in your son's best interest.

Best of luck,
gracie

jianhofa · 03-07-2010, 08:05 PM

Hi Gracie,

Thank you so much for the reply.

I agree with everything you said, we are still 10 or more years if ever away from mature stem cell therapy.

My dilemma is to wait for 10 years while missing the best treatment window, or to take a calculated risk to seek treatment now. It is killing me,

If you have a collection of the journal paper on the stem cell therapy, would you mind sharing them with me?

Thanks,

Jianhofa

gracie10 · 03-08-2010, 12:35 PM

Jianhofa,

Until recently I lived back east where I was able to take advantage of the medical library at Harvard for reference use on everything from human gnome studies to stem cell trials and controversies.

I am sorry to say, at least temporarily, we are clear across the country without hard copies. However, I do believe the library is accessible through the internet. Although, I have not as of yet checked to see if you need to be a current student or alumnus in order to take advantage of it's resources via special passwords etc.

I will see what I can do about directing you toward a source of information that may be of more help to you.

Just out of curiousity, what is your doctor's opinion on the subject if you don't mind my asking? Are you in an area where consistent on-going care is available? Have they given you any real information about the scope of his symptoms or what your feasible expectations ought to be? The answers to these questions may also play a large role in your options despite stem cells. Are stem cells even a course of treatment they bring up for discussion? Continue to engage your doctors and practioners. It is important that they understand you expect all your options for your son's optimal health to be an on-going dialogue. Strong advocacy with a healthy dose of informed expectations will always ensure your son's best interests are being met.

Truthfully, I don't know that I would risk the stem cell option on myself given the choice. But then, I am already grown with others who depend on me to make decisions that take their best interests into account as well. Not to mention, that I had the great fortune of being able to take advantage of the top-notch treatment of the time (70's-80's) by people who are now considered leaders in the field of CP care.

There are many dedicated doctors and researchers who are struggling mightily to improve care and maximize potential function for CP patients. Unfortunately, CP is not very "sexy" as causes go and we have no one famous to make it the cause of the day.

I hope that changes in time for your boy...
all the best,
gracie

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