Category Archives: Stem-Cell Research

The effects of Emma’s stem-cell therapy in Costa Rica.

Dinner With The President – Autism

I received a form letter from Vice President Joe Biden yesterday.  It was one of those mass emails one gets, but rarely reads.  For some reason I glanced at it and read that the president will be having dinner with one person who makes a small donation of five dollars.  Their name will be thrown into a hat and one name will be drawn.

I thought about what I would say to the President were I to have the opportunity to have dinner with him.  And of course I knew what the answer was without hesitation.  I would speak with him about the rising numbers of children diagnosed with autism.  I would direct him to the countless news stories regarding the rampant abuse of those same children and adults living in group homes and institutions.  I would ask him to help set up communities where individuals with autism would have more control over how they lived, allowing them to pursue their interests, encouraging them to follow their dreams.  I would tell him about our trips to Central America with our daughter, Emma for stem cell treatments.  I would encourage him to put more funding into stem cell research, umbilical cord stem cells, using the patients own stem cells, and any other form of stem cells that might prove viable in restoring the lives of hundreds of thousands, even millions.

As I continued to think about all the things I wanted to say and ask for, in the name of autism, I thought of the families like mine who have been affected.  I don’t just mean on an emotional level, but financially as well.  A diagnosis of autism is devastating to any family financially.  We have chosen to pursue a more aggressive route than many can or want, but any family, even those who have not taken their child to foreign countries for stem cell treatments has found the cost of caring for a child with autism staggering.  For those who have little or no resources, who have to rely on social services to help them, who cannot afford to have a caregiver come to their home to give them a break, they live in a world starkly different from those with similar financial constraints who have neuro-typical children.

So Mr. President, on the off chance my name isn’t chosen and I don’t have the opportunity to sit down with you, can you please help galvanize the medical community and make autism a priority in research, can you look at what we’re doing when we cut so much funding from our already overwhelmed schools, can you earmark autism as something we need to find answers to?

To read about the genesis of this blog and Emma’s journey through a childhood of autism, go to:

Emma on the Telephone

I must begin this post by stating the obvious.  I am not a scientist.  Biology was the one class in high school I almost failed.  In fact I had to go to summer school in order to restore my grade point average.  In both undergraduate and graduate school I avoided all things science by first going to Parson’s School of Design and majoring in Fashion Design and later did my graduate studies in Creative Writing.  Science courses did not play a large role in either of these majors.  That I now find myself steeped in science, stem cell research specifically, is more than a bit ironic.  And I have to say my avoidance of science is not serving me well in these on-going conversations with some of the most highly regarded stem cell specialists in the country.

Tuesday Richard and I had more disheartening news regarding the stem cell treatments Emma underwent.   We spoke with another stem cell specialist.  He told us if the donated umbilical cord blood from which they harvested the stem cells was from a male, then she could develop troubling complications as she reaches puberty.  Another specialist we spoke to an hour later refuted this claim.  I will not pretend to understand or repeat all that was told to us, suffice it to say, the news was not good.  On an optimistic note, we are learning a great deal even if I am unable to articulate all of it and there are some very positive things happening on the stem cell front in this country, just not so much with autism.

Richard and I are scheduled to speak with several other stem cell and autism specialists within the next few days.  In the meantime we are doing our best to manage our fears.  And it really does come down to just that – management.   I allow myself a specific time frame, say five minutes, in which I let myself think every frightening thought and then I tell myself – okay.  Time’s up, you have to think about something else.  As an entrepreneur, there is always work to be done, so this technique works well.

I am ending with a scene from yesterday afternoon.

Emma returned home while Richard was on another phone call.  Emma patiently waited a minute then went to his computer to watch a youtube video of the Beatles singing Happy Birthday.

“Emma, I’m on the phone you’ll have to wait,” Richard said.

“Have to wait,” Emma said, turning the video off.  She stood in front of the computer waiting.

“Hey Em, it’s Geneva, do you want to talk to her?” Richard asked, hoping to distract her.

“Yes!” Emma said, taking the phone from him.  “Hi Geneva!” Emma said.

“Hi Emma!  How are you?” Geneva said.

“No, not going to see Geneva on the airplane,” Emma said, shaking her head.

“No you’re not going to see me on the airplane…” Geneva began to say.

Emma interrupted her and laughed, “That’s so silly!”

“But you’ll see me when you get back to New York,” Geneva said.

“Okay.  Bye Geneva!” Emma said brightly and then handed the phone back to Richard, before turning back toward the computer.

“Not yet, Em.  You have to wait til Daddy’s off the phone,” I reminded her.

“Wow!  That was the longest phone conversation Emma’s ever had with anyone,” Richard said.

“Yeah, that was great,” I agreed.

“Hey Emma, do you want to talk with someone else?” Richard asked, holding out the phone to her.

Emma nodded.  “Hi,” she said.

“Hey Emma!” Joe’s voice was heard to say.

“Hi Joe!”

“Is your stomach still hurting?” he asked, referring to the 24 hour stomach flu she just had.

“Yeah, bye Joe!” Emma said cheerfully and then placed the receiver back in the cradle.

“Em!   Your stomach doesn’t hurt and you just hung up on Joe! ” Richard said.

Emma gave him an impish grin and began to laugh.

“You want to listen to your video, don’t you?” Richard said, laughing.

“No you cannot hang up on Joe!” Emma said, giggling.  “Now watch video?” she added quickly.

“You hung up on Joe so you wouldn’t have to wait any longer, didn’t you?” Richard said.

“Watch video?” Emma said, grinning.

For more on Emma’s therapist, Joe go to:

The Journey Continues

Many concerned people have contacted me asking what’s going on, so I will try to explain the recent course of events.  But before I do so, I just want to say I am extremely conflicted by what we have been told to date and by the opinions we have recently been given.  Unfortunately this represents the inherent problems with autism.  One is given a diagnosis based on observation and by the anecdotal evidence provided by parents.  There is no blood test, no x-ray by which a diagnosis is made.  No one knows what autism is, no one knows what causes it and no one knows how best to treat it.  There isn’t even one thing (whether a drug, a therapy, or any other kind of remedy) that everyone agrees will help.  As parents of an autistic child struggling to make sense of all the opposing opinions, it becomes a formidable task to wade through the copious amounts of information, opinions, articles and books.  We are continuing to do our best to make sense of all we are hearing, reading and learning and will continue to keep posting as we gather more information.

To give a summary of what has happened in the past week – through a series of unrelated incidences, Richard was put in touch with the two Drs. he and I referenced in the past two posts.  They voiced their deep concerns with the stem cell treatments we have been doing with Emma.  They gave an example of a boy who evidently developed tumors as a result of stem cell treatments he received in a third world country.  I do not know any more details.  We have, since our initial conversation with them, been put into contact with a number of other professionals in the field of autism and stem cell research.  Richard and I are doing all we can to get as many opinions from different researchers and doctors who specialize in autism and stem cell research.

Last winter when we began looking into stem cell treatments, wondering if it might help Emma, we spoke with a number of doctors who felt it was worth a try.  The two doctors who have been following Emma and meeting with us over the past few years were in the process of putting together a group of 40 autistic children to take to the Costa Rican clinic before it was closed.  They had funding in place, which has since fallen through.  These two doctors were our main source of information as they had both been to the Panama clinic as well as the Costa Rican clinic.  In one conversation with them, I was shown the brain scan of an autistic boy before he had done any stem cell treatments and then his brain scan after six treatments, which occurred over the course of two years.  His brain showed marked change and he is now in a regular school.  Seeing that scan was a turning point for me.  I remember standing in the doctor’s office and thinking – we have to at least try this. For another example of anecdotal success stories see comment to my last post, “Hope for Emma?”

Prior to Emma’s first stem cell treatment in Costa Rica I spoke with a couple of other doctors, a few of whom felt it was inadvisable to go, but prefaced their comments by saying they did not know of the work the Stem Cell Institute was doing personally, and two who said they were watching what the Institute was doing and hoping to replicate their treatments once it was allowed in the US.

To date we have not seen the sort of huge uptick we would hope to see on Emma’s brain scans.  We have been told we shouldn’t expect to see results so soon and that these things can take up to six months to show up.  Again these are opinions regarding a treatment, which has only been done to a few hundred children during the past few years.  Richard and I intend to continue monitoring her through our own observations as well as with periodic brain scans.  We continue to pursue the leading specialists in the field of stem cell research and autism.

At the moment, however, we have decided we cannot return to Panama and the Stem Cell Institute.  Richard and I agreed, when we began advocating for Emma, we would try anything to help her if there was no risk of harming her.  We cannot ignore what we are now being told.

Hope For Emma?

I have spent several hours starting different blog posts over the weekend and this morning, but have been unable to finish any of them.  I am still raw after the phone call Richard and I had with the director of the Stem Cell transplantation program at Children’s Hospital in Boston and the director of the Stem Cell Research Program also at Children’s Hospital in Boston.  See the previous post below, written by Richard on Friday.  An hour after our phone conversation in which they both expressed their concern with the stem cell treatments we have taken Emma to in Central America we received an email from them saying:  “We know that you are trying to do the best for your daughter, but given the issues we discussed, George and I think that you should not go back for stem cell treatment.”

I am feeling overwhelmed with emotions at the moment which is why I am having such a difficult time writing a post.  This blog is about Emma, not my fragile emotional state and though I have certainly written of the difficulties in parenting an autistic child I have tried to always keep Emma front and center – she is the star of this blog.  And yet, it is hard for me to write about anything at the moment because this blog is also about our hopes for Emma.  At the moment my hope is in short supply.


I’m feeling stunned. Early this morning, Ariane and I spoke at length with two of the pre-eminent doctors in the field of stem cell research out of Boston Children’s Hospital. They not only called into question the theoretical basis of what we had been told about the scientific rationale for the stem cell treatments we gave Emma, but warned us that they had the potential to be “extremely dangerous.”

It is possible that this could be another case of “he said, she said,” and that the doctors who recommended the treatment we have been following are every bit as knowledgeable and experienced as the doctors who were warning us not to undergo another such treatment, but frankly, these particular doctors are so highly credentialed that I have to give their opinions more weight – at least until we have gathered more information from others who are universally regarded as experts in both autism and stem cell research.

They gave us the names of two doctors in the Boston area who are considered to be experts in autism research and (perhaps?) stem cell research as well. It wasn’t clear to me from our phone call that the doctors being recommended were definitely doing research with stem cells, but they are involved with autism research as well as a variety of other neurologically based disorders. I made a promise to myself after the phone call today to stop making assumptions, so until we speak, I’ll just say that I’m looking forward to learning more. I visited both their websites and they have impressive credentials. They are both involved in genetic research so even if stem cells aren’t part of their programs perhaps they have other promising treatments under development.

Perhaps. Maybe. Possibly. I’m filled with doubt and uncertainty as to where we go from here. I do know that we have to keep doing more research, and since the entire field of autism is rife with contradictory theories from highly regarded researchers, we have our work cut out for us. More to come.


Before and after. Since we are not involved in any control group study, we need to establish a baseline reading of Emma’s brain waves before the stem cell treatment next week and then again afterward, probably a month or two post-procedure.

Joe and I will take Emma to the NYU brain research lab today where she will have a QEEG brain scan. It measures alpha, beta, delta, gamma and theta brain wave activity in the various regions of her brain illustrated with nifty color-coded pictures of her brain cross-sectioned from above and from the side. Black, navy blue, and brown – good news. Orange, yellow and red – not so good. We won’t see the results until after we come back from Panama so it will be a while until we can say anything about the ‘before’ baseline scan.

I’m hoping that we will see our doctor today and I’ll have an opportunity to ask him some more questions about the stem cell therapy. If so this will be a two-part entry. Before and after. If not, then it’s a brief blog today.

Our Emma

What lengths would you go to if your child were diagnosed with autism?

This blog is about what we have learned, what we have done and continue to try in the hope that we may help our daughter Emma, now 8 years old, lead a life that includes deep friendships and the powerful bonds that result from being able to communicate with one another.  A life that is enriched by our interactions..  this is what I dream of for her and what drives us to go to such extremes to help her, hopefully, achieve some day.

Five and a half years ago we received the news that she had been diagnosed with PDD-NOS (pervasive developmental disorder – not otherwise specified).  Since then it has been nothing less than a wild roller coaster ride of hope, disillusionment, gratitude, determination and perseverance.

Here are some of the therapies we have tried in the last five plus years:

Gluten/Casein free diet – no noticeable change after five months

Homeopathy – up to 13 tinctures a day delivered orally – suppose to help her gut issues – no noticeable change after more than 10 months.

Cranial Sacro Therapy – did seem to help her constipation issues at first, but over a longer period (close to a year) did not appear to help enough to warrant continuing.

Qigong Master – suppose to help regulate her “energy flow” and promised to “cure” her autism – no discernible change after almost 6 months.

Chelation – we did one round before discontinuing upon advisement from a number of lead and metal specialists out of Albert Einstein College of Medicine.

Detox Foot pads – Pads that supposedly draw toxins from the body while she slept.  No noticeable change after several months.

Brushing Therapy – Emma became very hyper as a result of brushing therapy and after her sleep became disrupted we discontinued.

Auditory Integration Therapy – while this therapy did not seem to adversely effect her, it did not appear to help either.  We discontinued after a few years when she began objecting to it.

Hyperbaric Chamber – We did not do more than 10 sessions.  So I cannot comment on whether this may have helped or not.  We discontinued because we were starting the stem cell therapy and wanted to do one over the other.

ABA (Applied Behavioral Analysis) – 40 hours per week – we discontinued after two years when Emma began regressing.

Stanley Greenspan’s Floortime Therapy – We continue to use Stanley’s DIR methods.  Emma has made noticeable improvements in language – both receptive and expressive – as well as shows a real interest in initiating play with others, both adults and peers, as well as a huge uptick in imaginary play as a result.

Stem Cell Therapy – The Institute for Cellular Medicine – Costa Rica

We took our daughter Emma for her first bout of stem cell treatments with the hope that they might help her autism in March, 2010.  The Institute for Cellular Medicine was introduced to us by Emma’s neuroscientist in New York City.  This treatment is in it’s infancy, they have only treated about 100 autistic children, but are seeing promising results.  The stem cells were harvested from umbilical cord blood and mixed with her own blood serum..  They then injected this mixture intrathecally and intravenously on Tuesday and again on Thursday.  She was sedated for all procedures.  Emma had a bad reaction to the first round, evidently fluid leaked from her spinal cord causing blinding headaches and vomiting.  We were able to calm her with pain medication and by Wednesday evening she felt much, much better.  We decided to go ahead with Thursdays treatment and had them sedate her after the procedure to ensure that she lie flat and thus lessen the likelihood of seepage from her spine.  She was also given a drug to reduce nausea.  She rested in the hospital with us by her side for almost four hours.  We have been told that we should not expect to see any significant change for a month or two.  We will be returning to Costa Rica for round two in August.