The vicissitudes of our daily life with Emma require a certain degree of hope in order to stave off the depression lurking in the background. I need a plan of action, something I can refer to when I am tired, when my defenses are down, when I feel my grip on that tenuous thread of hope beginning to loosen.
At the moment I am reading about RPM – Soma Mukhopadhyay’s Rapid Prompting Method for autistic children, which gave her non-verbal son Tito a voice. I have watched the videos, have read her book and am now rereading the book while taking notes. I am on a waiting list to go with Emma to Texas to have a four-day session with Soma. In addition I have just started reading Dr. Howard Shane’s book – Visual Learning. I need to be alert while reading as the subject matter is dense and I have difficulty taking it all in.
Emma continues to wake the entire family at all hours of the night, resulting in all of us being exhausted, relying on caffeine to get us through the day with no end in sight. Poor Nic, who is not allowed to drink caffeine, has to muddle through as best he can. It is certainly affecting his ability to concentrate at school.
“We don’t have a plan,” I said to Richard this morning. “We need a plan of action.”
But the truth is, I need an infusion of hope. Like an IV – hook it up and let it drip into my veins. Hope is the thing, more than anything else motivating me to keep pushing ahead. Hope is the lens through which the world can seem grey and dull or bright and cheery. I need hope. So I think about the phone call Richard had yesterday regarding Emma’s last QEEG. We had the brain scan done the day before we left for Panama for her second round of stem cell treatments. Our conflicting schedules have made it impossible to meet to go over the results. Richard is meeting with one of the doctors this Friday. The doctor told us he thought there were some interesting things going on with that last scan.
So we wait and we hope.
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.
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.
Posted in Autism, Stem Cells, Stem-Cell Research
Tagged autism children, autistic, autistic children, autsim, children with special needs, reserach stem cell, special needs, special needs children, stem cell, stem cell research, Stem Cells
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.