Tag Archives: stem cell treatments

Stem Cell Treatments

Posted on January 22, 2014 by | 26 comments

“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

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Posted in Autism, Parenting, Stem Cells

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A Look Back

Posted on November 28, 2011 by | 4 comments

When Emma was first diagnosed Richard and I decided to start noting her progress in a little leather bound book we entitled – Emma’s Hope Book.  The idea was that it would be just that.  A book filled with hope.  After the first few months of making sporadic entries, we wrote in it very little.  We were immersed in Emma’s “boot camp” of 35 hours of ABA, with therapists coming and going, then there was the speech therapy and the occupational therapy as well as the homeopath, the cranial sacral therapist and the DAN doctor.  In addition, I was caring for Emma’s older brother Nic, who we had decided to keep out of nursery school, (even toyed with the idea of homeschooling both the children) before we knew of Emma’s diagnosis.

A few months ago I came upon the original Emma’s hope book and flipped through the 27 entries spanning the time of her diagnosis – 10/2004 – April/ 2010 when I began this blog.

The first entry was written by Richard in October, 2004.  He wrote:  “Emma said, “Peek-a-boo-I-see-you!”  Pointed to her eyes when I said, “no eyes.”  I said – “Bertie hit you with his tail” and she immediately grabbed his tail.”

In the beginning we looked for any sign of understanding or attempt to communicate, no matter how small.  While other two-year olds know well over two hundred words, Emma said very little.  It was difficult to gauge how many words she really knew, as days would go by with no words spoken at all, then other days she would say half a dozen words that she never repeated.  I now wonder that those words weren’t things she’d heard and was echoing back, but didn’t really know or understand.

In any case, the first Emma’s Hope Book never got off the ground.  It was suppose to be a document of hope, something we desperately wanted to feel, but often had in short supply.  We would hear of some new treatment, a diet, biomedical intervention, or therapy and would feel a surge of hope, only to feel that hope dwindle as the months wore on and she made little if any progress. When we learned of the stem cell treatments in Central America, we felt another surge of hope, which was when I began this blog.  It was intended to show her progress from the stem cell treatments.  By the third treatment, we still hoped stem cells would be the thing that threw Emma out of her “autism” and into our world of “normalcy.”  But whatever progress she’s made from the stem cell treatments is not something we can pinpoint or even know with any certainty.  They may have helped, but they just as easily may not have.  We never saw such a massive uptick that we were left without doubts as to their effectiveness.  This has been our experience with almost everything we’ve tried.  All the biomedical interventions, all the behavioral therapies, all of them have done very little.   Or perhaps it is more accurate to say – None of them have had a huge impact.

But, call us crazy, we keep trying to find ways to help her.  We keep looking.  We try to keep an open mind.  We try to keep our hope alive.  There are days when our hope falters, though usually it is just one of us who feels particularly glum and the other is able to infuse some hope into the conversation.  Every now and then we both feel a lack of hope and that is when we will remind each other to look back.  We look at how far she has come.  The one intervention that has made a huge difference is Emma’s literacy program.  We remind each other that just one year ago, Emma couldn’t form all the letters of the alphabet, now she is writing complex sentences, uses the past tense and is often able to use the correct pronoun in answering a question. She did not know what a math equation was, let alone able to solve one or write one.  We are often exhausted, but even through our exhaustion we are able to enjoy and appreciate Emma in all her Emmaness.   Just as she is.

Emma found this old Halloween Costume of Nic’s and put it on saying – “I’m a monster!”

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

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Posted in Alternative Therapies, Autism, hope

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Day 6

Posted on October 21, 2011 by | 5 comments

Call me crazy… BUT I think we’re seeing some changes.  Okay, I know, I said this after each of the three stem cell treatments.  Though there really did seem to be a slight shift – a change in her speech, better eye contact, longer more complex sentences, a more grounded presence in the world and I don’t think we were wrong about any of that.  I’m pretty sure Emma really did make some progress.  However, here’s my latest theory  (Richard, please refrain from rolling your eyes) – what if the stem cell treatments were helped by the fact that she also wasn’t eating all the dairy she normally ate.  What if in addition to giving her a little boost, the fact that she ate very little and therefore almost no dairy and hardly any wheat contributed to the progress we saw?   What if these food intolerances really are making it difficult for her to concentrate, focus, stay on task, carry on a conversation, maintain eye contact?

Today is the 6th day on Emma’s modified gluten free/casein free diet.  I use the word modified because, according to Dr. D she can tolerate dairy products from sheep and goats.  However she is not allowed to eat anything containing soy, corn or potato.  Which pretty much eliminates all pre-made foods, no matter how organic and gluten free they are, they all, every single one of them, contain either soy, corn or potato and often all three.  In addition she cannot eat anything with chicken eggs as she cannot have the whites, yolks are okay, but not the whites.

I’ve been doing a great deal of baking.  Which is a bit ironic considering how little Emma is actually consuming, but I keep trying to find things she might like.  I also love a challenge.  My mother told me about one of those cooking shows she likes called Chopped or a name like that. I’ve never watched it, but she described how the chefs are given bizarre items such as (I can’t remember what the actual ingredients were on the episode she told me about, so I’m making this up) – sweetbreads, licorice and coca-cola – and told to create something edible.  The chef then whips up some amazing concoction using those ingredients as their base, which looks delicious and the judges proclaim it a work of art.

The list of Emma’s “CANNOT EAT” foods sits on our kitchen counter, where I refer to it, reminding myself that if someone can prepare a fabulous dish with lifesavers and sweetbreads (or whatever it was they were given) then surely I can create something Emma will eat with all the foods she CAN have.  Still it does seem daunting.  And I’ll bet Emma wouldn’t touch any of those dishes prepared by those fabulous chefs, no matter how talented they may be.  Emma is one discerning customer.  Or as my son Nic said in answer to my question as to why he didn’t like the girl who keeps texting him at all hours of the day and night, “I’ve got very high standards, Mom.”  He then went back to playing his video game, involving lots of blood, various weapons no one has ever heard of and screams of agony.

When I first told Richard about taking Emma to Dr. D, he asked, “So what’s the science behind this?”

And the truth is I cannot answer that.  Though the following non-biased paragraph from the website, about.com is a pretty good description of the theory behind foods, intolerances, GI issues and autism:

“Why Does GFCF Seem to Work?

GFCF diets are difficult and expensive to administer. They require a lot of dedication and knowlege, and most professionals suggest that the diet be implemented over at least three months. Given all of this, it’s possible that parents who desperately want to see improvement could report improvement that may or may not actually be present. In addition, many children do gain new skills over the course of three months, with or without special diets.But there’s more to the story than just wishful thinking. Allergies to gluten and cassein are not uncommon, and those allergies often manifest themselves in diarrhea, constipation, bloating and other symptoms. About 19 to 20 percent of autistic children seem to have significant gastrointestinal issues.

If these issues are caused by gluten and/or cassein, then they would certainly be significantly improved by the diet. By removing a source of constant discomfort and anxiety, parents may well be opening the door to improved behaviors, better focus, and even lowered anxiety.”

It may be that I am trying to find improvements that have nothing to do with the change in her diet.  It may be wishful thinking on my part.  It may be that what I’m seeing may have happened had we not started her on this radical new diet. But I began this blog as an honest documentation of Emma, the progress, the lack of progress and everything in between.  Since we began the diet I have seen the following:

Greater sustained eye contact.  Less spaciness and a more solid grounded presence.  An interest in her Dad and a desire to include him beyond what she normally displays.  This morning, when I told her we didn’t have time to finish her study room and that we’d finish it tonight, she said, “Study room later.  We get to show Daddy.”  Now this may seem insignificant to most, but I can tell you, to Richard this sort of acknowledgement is a long time coming.

Emma – last night – October 20th, 2011

For more on Emma’s journey through a childhood of autism, go to:   www.EmmasHopeBook.com

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Posted in Autism, diets, Parenting

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On the Spectrum

Posted on October 12, 2011 by | 2 comments

I was asked recently why I am trying so desperately to overcome autism.  It’s a valid question and it made me think about the challenge of writing about one’s child in a way that honestly captures that child with all their complexities.  A week or so ago I wrote in my post entitled A Cure – “Emma cannot function in our world, she is not mainstreamed, she cannot take a shower, wash her hair and dry herself off without support.  We are not discussing nuances here.  We are talking about a child who is more than “quirky”.  My husband, Richard and I love quirky.  Quirky is GREAT!  We’ll take quirky.  But that’s not what Emma is.”

To me, that summed up why we continue to search, why we continue to try various things, but it does not adequately describe Emma.  Emma cannot function in our world without hands on support.  We cannot have a conversation with her or ask her questions.  I am still trying to capture Emma on video and post some clips on here, but haven’t had the time to do that yet.  The question I began this post with, made me realize that for someone reading this blog they cannot know her through my writing.  Perhaps one gets a sense of her, but there’s too much left out, too much I don’t think to mention, the cadence and inflections of her speech, the words, which I can understand, but which may not be understood by someone else.  I try to give an accurate portrait of her, but in the end, it is just that, an interpretation and not representative of the whole.

When we first received Emma’s diagnosis I was determined to find a “cure”.  I felt sure that I would find one too.  (Hubris?   Arrogance?  Ignorance?  Stupidity? Denial?  All of the above?)

After those first few years I realized I might not find a cure for what ailed Emma.  And after another few years and three trips to Central America for stem cell treatments under our belt, a “cure” seemed more and more elusive.  I have come to accept that.  Perhaps more importantly, I am less focused on the miracle of a cure and more focused on pushing Emma to expand her world.  There’s a balance we have tried to achieve with Emma.  We try to follow her lead whenever possible, but we also encourage her to stretch and do things beyond her comfort zone.  Our most recent attempts to expand her diet is a case in point, her literacy and math program are another.

Which isn’t to say that I don’t continue to research and do everything in my power to find treatments to help her.  I am convinced Emma’s digestive issues are exacerbated by her environment – the foods she ingests, the air she breathes, the water she drinks.  This Friday I am taking Emma to a doctor who has worked with hundreds of children on the spectrum.  He and I spoke on the phone yesterday for over an hour, going over her history, her GI issues (inflammations and ulcerations), chronic constipation, recurring strep throat, porous teeth, cracked heels and limited diet.  While a few years ago, I would have eagerly anticipated this appointment with the same degree of excitement the devoted view a visit from the Pope, I no longer do.  I have come to see all of these people, no matter what letters may follow their name, with tempered interest.

Last week Emma’s school bus matron told us Emma refused to buckle her seat belt and when the bus matron tried to help her, Emma kicked her hard in the chest.  We immediately went over with Emma the behavior we expected from her.  We rehearsed buckling her seat belt and made sure she had her ipod and ear buds with her so she could amuse herself once she was seated.  We went over the importance of not hurting another person.  We tried to consider what sort of support she might need to help her control herself.  We are lucky in that Emma seems to have understood and has not struck nor tried to get up from her seat while on the bus since.

As we waited for her bus this morning, I coached Emma, “Emma, it’s nice to say good morning to people.  She’s a nice lady and saying – Good Morning – will make her smile.

When Emma boarded the bus this morning she said, “Good morning, nice lady.”

The bus matron beamed.

There are many people with an autism diagnosis who are on the “mild” end of the spectrum or fall in the “gifted” category of Aspergers or are considered “high functioning”.  These children are often mainstreamed or learning at grade level or above.  And while they have tremendous hurdles, often requiring support into their adult lives, they occupy a different level of hurdles from those who, like Emma are moderately autistic.

I had a friend whose child was unable to walk or even lift his head.  He, too, was diagnosed with autism, though severely so.  That child faced developmental and physical problems far beyond anything Emma has had to deal with.  For me to compare the two would have been ludicrous.  At this point my goal is to get Emma to a higher level on the spectrum.

For more on Emma’s journey through a childhood of autism, go to:   www.EmmasHopeBook.com

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Posted in Autism, Parenting, Stem Cells

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Dinner With The President – Autism

Posted on June 22, 2011 by | 1 comment

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:  www.EmmasHopeBook.com

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Milestones and Miracles

Posted on November 21, 2010 by | 1 comment

As we sat at the dinner table last night celebrating our dear friend Claudie’s birthday, I saw Emma ride up to Nic on her scooter and stand in front of him as he sat on the couch listening to music on his iPod.

“Hey Nic!” she said.

It was very unusual for Emma to go up to Nic and speak to him so directly so I nudged Ariane who was sitting next to me, and pointed in their direction.

“Hey Nic!” Emma repeated. “Will you come to mommy’s room with me and watch Elmo?”

We were absolutely floored. Ecstatic. Choking up with emotion. Not only was this one of the longest and most articulate sentences Emma has ever spoken, it was also directed at Nic, asking him to do something together with her.

For any parent of two normal children, this would be something you take totally for granted — something you would have witnessed twenty million times by the time your children were 10 and 8 years old. For us it was first, a true milestone, as significant as when Nic and Emma took their first steps or spoke their first words. More than that, it was something we had hoped and prayed would happen for such a very long time. Something we feared might never happen.

It was a miracle.

We looked at our guests with our mouths hanging open in shock and wonder, then began hugging and kissing each other in joy and gratitude. It was such a special moment, made even more special by the great good fortune of being able to share that wondrous milestone with such special friends. Claudie said it was the best birthday present she ever had. Elaine knew exactly what we were feeling and how significant it was, having experienced parental challenges so much more arduous and painful than anything we have weathered.

I went with Emma and Nic into our bedroom and helped her put the Elmo DVD on, then spied on them from around the corner, my ears perked up for any more dialog that might be forthcoming. They just sat together silently, watching Elmo, Nic barely able to tolerate it, but being such a great sport, Emma looking so happy in his company.

Eyes were teary as we put the candles on Claudie’s cake, then called for Nic and Emma to join us. Emma came running in like a freight train, since two of her favorite activities in the world are singing Happy Birthday and blowing out candles. True to form, Emma led the chorus, singing as loudly and cheerfully as always. When the song finished, Claudie started to blow out the candles but Emma leaned across the table and blew out most of them first.

“Emma, those are Claudie’s candles,” Ariane admonished, then asked Claudie if she wanted us to re-light them.

“No,” Claudie said, “I already made my wish.”

And we had one of ours granted.

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Exhaustion

Posted on October 5, 2010 by | Leave a comment

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.

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Panama – Day 5

Posted on August 13, 2010 by | 1 comment

We are in the clear.  Emma made it through the second treatment with no side effects.  She stayed in the clinic for two hours after the procedure was over to ensure she didn’t develop any complications.  Our biggest challenge was not worrying about her reaction to the procedure, but in keeping her occupied since she was feeling so terrific she wanted to:  swim, go back to the mall, ride on the carousel, find a water slide, go bowling, all of the above.

Emma waiting to have the stem cell treatment.

Emma awake.

I took this photo and Emma said, “Now go back to sleep.”   Then she closed her eyes.

I asked Richard how he was feeling, now that we were through the second round of stem cell treatments.

“It’s strangely anti-climactic and I’m tired.  It’s not as though I was expecting her to begin quoting Shakespeare, but there’s a kind of post-partum depression feeling.”  He stopped talking for a second then said, “Do you feel it too?”

“Yes, very much so.  I feel as though I’ve been given a sedative.”

“And now we wait,” he said.

“Right.”  I said.   “We wait and try to stay in the present.  I think that’s the hardest part in a way, trying not to think about the future with a lot of fantasies and projections.”

A couple of noteworthy things…  Emma’s recent interest in Muzzy, her green stuffed monster is a positive sign.  She brought Muzzy into the operating room both times and used him to express some of her fears and anxiety.  She has insisted on taking him out with her whenever we’ve gone anywhere during this trip.   In addition to her growing affection for Muzzy is the more elaborate pretend play she is engaging in with more frequency.   She has not wet the bed for 18 nights, even has gotten up in the middle of the night to pee on her own without prompting.  Since we’ve been in Panama Emma has been sleeping in her own bed.  All of these things are positive signs!

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Panama – Day 4

Posted on August 12, 2010 by | 1 comment

Emma began yesterday with a long swim.  She has devised a game where she leaps into the pool with a towel wrapped around her waist.  For some reason this strikes her as the height of hilarity.  Then she drags herself, still wearing the towel, out and onto one of the lounge chairs where she sits and announces to anyone within listening distance that in fact, she has just jumped into the pool wearing a towel.  Regardless of the listener’s reaction, Emma breaks into peals of laughter before leaping into the pool again – with the soaking wet towel.

After Emma’s swimming pool escapades, we ventured off to La Vieja – the old city.

Emma in the ruins discovered in 1519, only to be destroyed by Henry Morgan in 1691.

After visiting the Artisnal Market exhibiting local crafts and going to La Vieja museum we drove to a mall where we were told was a carousel and some other children’s rides.  Emma was ecstatic.

However once she had taken four rides on the carousel, we suggested we look for some of the other rides we had been told of.  There were three.   Two, which she was too big to ride in and one, the teacup ride, which she was the right height for but was empty and they wouldn’t let her on unless another child showed up.  Emma took the first disappointment in stride, “Too big,” she said, nodding her head, the smallest frown appearing on her forehead as she tried to reason this out.  But when she was not allowed to ride inside the teacups because of a lack of other children she began to fret.  “Go on cup ride?” She whimpered.

“Yes, but we need to wait until some other children come to ride too,” We tried to explain.

Our explanation was weak and we knew it, but there was nothing to be done.  Joe and I went to plead with the “supervisor” to see if we could convince them to let her ride on it anyway.  They were resolute.  Emma began to cry, “Go on cup ride?  Go on ride.  You have to wait.  I said no!”

“It’s okay Em, we can wait and see if another child comes, then you can go on the ride too.”

Even while saying this to her, the weakness of the argument was all too apparent.  Why one other child should make a difference was not something any of us could explain.  Was there a balancing issue, weight distribution problem?  Who knows, but our Spanish being what it was, even Joe’s fairly good Spanish, would not sway them.  Meanwhile Emma became increasingly distraught.  All the joy from the carousel was now replaced by a kind of frantic, perseverative mindset.  Eventually another child did come along and Emma was able to ride in the teacup.  It was not a joyful ride. It was as though she no longer could obtain any amount of actual pleasure from the ride.   It had fallen into the “must do” category, an action, which must be taken, but with no enjoyment attached.  There was an addictive quality to the desire.  It was as though she were caught in a rut of thinking, nothing could be said or done to quell.

Emma riding in the teacup.

Once the teacup ride was over Emma went back to the other two, which she was too big for and insisted on riding in either of those.

“Ride in train?” She asked, anxiety creeping into her voice.  “You’re too big, you have to wait,” she said.

“Em, let’s go see if we can find the big indoor playground.  You can bounce,” One of us encouraged.

“No.  Ride?” Emma said.

“Emmy, we can’t go on these other rides and only on the teacup ride if there’s another child.”

“Ride in cup?”  Emma said.

Eventually we were able to pull her away and began to look for the indoor playground.  Emma was unhappy and sucking her thumb, clasping Muzzy to her and repeating the same phrase over and over again.  “Ride on carousel?”

“Okay, let’s ride on the carousel,” Richard said.

It was decided Richard would scout ahead to see if he could find the indoor playground while Emma rode on the carousel a few more times.  Once Richard was out of sight, however, a train came by stopping at the carousel.  So we took the train which runs the length of the shopping mall.  Immediately Emma perked up.

Emma in the train with Muzzy & me.

 

Back to the carousel and then to a round elevated platform where Emma made up a game she called:  “Swing game”.

The Swing Game went on for quite some time, with Emma running around the parimeter of the elevated circle with Muzzy as one of us tried to catch her.

Today we go into the clinic for the second stem cell treatment.  We have been preparing her.

Emma:  Take Muzzy to hospital.  You have to put the mask on. Last time.

Richard:   Yes.  Today is the last day of the hospital.

Emma:  Then bye-bye hospital.  Sleep, wake up, go to play swing game!  Go on airplane, go see Granma!

Richard:  Yes, that’s right.  Tomorrow we rest and then Saturday we go on the airplane to see Granma.

Emma:  I’m so excited.

As are we all.

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Posted in Autism, Panama, Stem Cells

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Our Emma

Posted on April 5, 2010 by | 10 comments

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.

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Posted in Autism, Parenting, Stem-Cell Research

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