Tag Archives: research stem cell

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.

In Panama (Day 1)

It’s the rainy season here in Panama.  We’ve been told even by Panamanian standards this has been an unusually rainy one.  In fact, we just saw lightening and heard thunder close to the condo we’ve rented for the week.  To which Emma said, “Ohhh!  It’s thunder!  So scary.  It’s raining bubbles.   Now go swimming.  The swimming pool’s closed.”

All of this was said quickly without a pause.  I managed to confirm it was raining, but Emma seems to have the entire situation under control.

This morning we go into the clinic and speak with the doctors.  When we were in Costa Rica for round one they interviewed us, video taped Emma and then we went to the hospital to have fluid removed from her spinal column and blood drawn.   I believe this is the protocol for today as well.

When I arrived last night, Emma was sitting at a table in the living room listening to music on her ipod.  She turned and saw me enter the room, “It’s Mommy!  Mommy stay at Granma’s house,” she said.

“Emma!  Hi!!” I said.  I ran over to her and knelt down, “Emma!   I want a hug.”  I put my arms out and she leaned into me with a huge smile on her face.

“It’s Mommy!  Mommy stay at Granma’s house,” she said again.

“Yes, but now I’m here with you,” I said as I held her tightly to me.

“It’s Mommy!”  Emma whispered to me as she hugged me.

“I’ve missed you!” I whispered back.  I stood up with Emma’s arms still wrapped around me and twirled her around.  Emma laughed and wrapped her legs around my waist, gripping me even tighter as we twirled around and around.

It was a lovely welcome to a long day.

Later as we brushed her teeth she pointed to the reflection of me in the mirror and said, “It’s Mommy.”

I pointed to her reflection and said, “It’s Emma!”

Emma laughed.

As I tucked her into bed she said, “Night Mommy.”

I said, “Do you want me to lie down next to you for a minute?”

“Yes!”  Emma said, smiling.

I cuddled up next to her and put my arm around her waist.  She grabbed my hand and pulled my arm around her.  “Emma’s sleeping,” She whispered.

“I love you, Emma,” I said.   I waited for her to say, “So much.”  But she was already asleep.


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.