Tag Archives: alternative medicine

Stem Cell Treatments

“You thought my autism was hurting me and that you needed to remove it, but you did not understand that it is a neurological difference and fear caused you to behave with desperation.”  ~  Emma on the topic of the three stem cell treatments we did in 2010

Every now and then people find this blog through a site that promotes stem cell treatments in Central America.  In our long and twisted journey since Emma was diagnosed with autism, stem cell treatments were something we once hoped would help our daughter.  It is a decision I deeply regret.  People ask me whether I think it may have helped her.  I do not.  People have wondered whether the tremendous strides Emma has made are not directly related to those stem cell treatments.  They are not.  I can say this with assurance.   If you want to learn more about how Emma is communicating, click on this link.  The stem cell treatments put Emma’s life in danger.   We have no way of knowing what we may have exposed her to because of those treatments.  For the rest of our lives we will not know if the stem cell treatments harmed her.  We will never know and that is a fact we must live with.

In April of 2010, we believed anything was worth trying if it would help our daughter.   Just four years ago, I believed being Autistic meant a life of untold misery.  Autism was a list of deficits.  At the time, I doubted whether my daughter would be able to learn to read and write, let alone speak in a conversational manner.   I had no idea what my daughter was capable of.  I had no idea that she already knew how to read.  I know this now because she has told me through her writing.

We took Emma to Costa Rica and later to Panama for three rounds of stem cell treatments despite being strenuously urged not to go by a team of stem cell researchers out of Harvard.  We were cautioned about the experimental nature of this procedure.  We were told it was risky, dangerous, highly invasive, and yet we made the decision to take her anyway.  We did this because we loved our child and, at the time, believed anything we tried was worth it, if it might “save” her.  (I use that word purposely because this was what we once believed.)  We believed we were giving her a chance at life, we believed, if we did not try this, we would regret it.  We held out hope that maybe, just maybe this would help her communicate and thereby give her the opportunity to form friendships.    

I’m not going to go on a rant about all the misinformation we were given by well meaning professionals, educators, medical experts and pretty much every single person we came into contact with on the subject of autism and our daughter, all of that is pretty well documented throughout this blog over the last year and half, but I will say this, our response to autism and what we believed that meant for our daughter was not unique.  We knew of a great many parents who believed just as we did, that any treatment was better than doing nothing at all.

This blog began as a result of those stem cell treatments.  I never thought more than a handful of people would read what I was writing.  This blog was a way to document the changes we hoped we would see because of the stem cell treatments, a treatment that is not allowed in the United States, a treatment that has since been outlawed in Costa Rica as well.  We believed we were doing a good thing.   For those of you who never contemplated such drastic measures, I understand how incredible this must sound.  For those of you who are Autistic, I can only tell you how sorry I am that this was what we once believed.

We all make mistakes.  Some of us have made terrible ones; things we cannot undo, take back or cancel out with an apology, no matter how heartfelt.  What I can do is continue to learn, hope to do better, and do all I can to counter that list of deficits so commonly attached to an autism diagnosis, while signal boosting Autistic people’s words, including my daughter’s.

Last night Emma and I discussed those stem cell treatments from four years ago and she wrote the words I opened this post with.  When I told her that if I could take those treatments back, if I could cancel them out, I would, in an instant and without hesitation.   She then wrote, “Many parents have not loved their children as much as you.

This isn’t about forgiveness, I know she forgives me, this isn’t about publicly beating myself up, this isn’t about me learning to forgive myself, this isn’t about me at all.  This is about misinformation, where that misinformation leads us and the inherent problem with speaking about autism as a “medical disorder” as opposed to a neurological difference; a difference that carries assets and deficits just as non autistic neurology does.  This is about oppression, segregation, prejudice and how that plays out in every aspect of autism, autism research, autism treatments, biomed interventions and almost all of the various autism therapies that currently exist.

“Put it on the blog!” Emma said, after we talked about all of this.  

“Really?  You want me to put this on the blog?”

“Yes,” she said and then she leaned over, gave me little kisses and added, “Aw… sweetheart…”

Emma walking among ruins in Panama ~ 2010

Emma walking among ruins in Panama ~ 2010

Supplements and Doctors

We are currently giving Emma eight different supplements recommended by the naturopathic physician I have been taking her to.  I am not a big pill taker, in fact I must be in extreme pain before I’ll think to take an aspirin and even then, Richard usually has to remind me.  “Honey, why don’t you take some advil?” he’ll say.  “Oh!  Good idea.  I hadn’t thought of that.”  Then Richard will smile at me with a look usually reserved for a very young child.

My deep distrust in the medical community stems from my father’s horseback riding accident when he broke his back and lay hospitalized in a coma when I was just nine years old.  The doctors were skeptical regarding his recovery, some even wondered whether he would come out of his coma at all, while others suggested he would remain paralyzed for the remainder of his life.  When he came to and months later after grueling daily sessions of physical therapy began to walk and even start horseback riding again, I concluded it was all an inexact and questionable science.  Actually my issues with medicine are more likely genetic and coded in during utero, but in any case, I don’t trust doctors.   I view hospitals with the same degree of horror others view a sinkhole, it would probably not be an exaggeration to say I have a phobia toward them.

The fact that I am the driving force in giving Emma eight different supplements, while Richard (who pops aspirin like they’re chiclets) rolls his eyes and wanders off into another part of the house, is nothing short of ironic.

“I have a theory about all of this.”  I made this announcement yesterday morning as I prepared to leave for my studio.  I can’t be sure, but I think Richard muttered something derisive under his breath.  I ignored him.  “I think these supplements have healed the cracks on her heels.  They’re almost all gone.”

“You don’t think all the lotion I rub into her feet every morning and night and making her wear socks has anything to do with that?”  Richard asked, with what sounded to me like an unnecessarily aggressive tone.

“Well let’s stop doing that and see if her feet get worse,” I reasoned.

“No.  We are not going to stop the thing that is probably helping her feet heal.”  Richard countered.

“I’m just saying, if you want to know for sure, we would need to stop and see if the cracks come back,” I said.

“Look, if you want to stop, then go ahead after they’ve completely healed, but we’re not going to stop before that.”

And here’s the thing – Richard’s probably right.  Every evening and morning before Emma gets dressed, Richard carefully rubs ointments and lotions into the cracks on her feet, then he painstakingly finds socks (in colors that match her shoes) and gives them to her to put on before she slips on her Uggs.  Because that’s the kind of amazing guy he is – thoughtful, kind, caring and a devoted dad.  He has been doing this for over a month now and sure enough the cracks on her feet have almost completely healed.

When I took Emma to the naturopath last week he looked at her feet and noticed how nicely the cracks were healing.  I described how Richard was caring for them with lotions and insisting Emma wear socks.  He nodded his head and said, “Well at least they’re healing.”  But I could tell he thought it was from the supplements I’ve been giving her.  I asked him if he thought the cracks could be healing from wearing socks and all the lotion we’ve been putting on.  He shook his head and said, “Socks and lotion aren’t doing that.”

Maybe, but maybe not.  In any case, I’m really glad I have a husband who’s on top of the whole lotion part and we’ll keep giving her supplements in the hope they are doing something positive too.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book


A couple of years ago I was told about a doctor who worked miracles on people and it was suggested I go to him for a consultation with the hope it might help Emma.  His office was on the upper west side in a beautiful old brownstone, the interior wall of the office was a waterfall.  The doctor ushered me into his private office and handed me his driver’s license.  I was a bit taken aback, but politely took it.  He said, “Guess how old I am?”  When I didn’t respond he said, “Look at my driver’s license, I bet you wouldn’t have guessed I was that old.”

He was right.  His driver’s license told of him being over 60 years old.  He certainly could have been in his fifties.  I handed him back his driver’s license.  “I’m actually here about my daughter,” I said, lest he misunderstand my intentions.  We then went on to discuss Emma and the various specialists we’d taken her to.  He listened and to his credit told me, without much enthusiasm,  he might be able to help her, but that he would call me in the next few days, something he never did, for which I am grateful.  He did however give me the book he’d written.  It was on blood types and how specific foods should be avoided depending on one’s blood type.  I decided to try what the book suggested and for a couple of months ate only the foods for my blood type.  Other than finding pomegranates do not agree with me, there were no other benefits.  I never did take Emma to see him.

When Emma was first diagnosed I was frantic to find help for her chronic constipation.  We went to at least a dozen different GI doctors and alternative healers.  Not one of them suggested giving her magnesium until I took her to the naturopath this past October.  Yet, magnesium is a supplement that has helped her.  Another beneficial supplement for Emma has been melatonin, given before bed, it helps her sleep.

Currently we are giving Emma seven different supplements, a zinc drink, cod liver oil and nordic fish oil.  Emma is terrific about taking all of it every morning and evening without complaint.  However, the deep cracks on her feet have not healed and the rash on her inner arm continues unabated.  I will continue my search.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book