Tag Archives: Stem Cells

Panama – Day 4

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.

Baseline

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.

This Morning’s “Conversation”

(Showing Emma this photograph)

Emma splashing

A:  Hey Emma!  What do you see?

Em:  He putting on the sprinkler.

A:  Who’s “he”?

Em:  He putting on his feet in the sprinkler.

A:  Who is that?

Em:  Emma.  Emma putting he feet in the sprinkler.

A:  Her.  Her feet in the sprinkler.

Em:  Her.

A:  You’re putting your feet in the sprinkler.

Em:  Yeah.

A:  Was that fun?

Em:  Yeah.

(I show her this photograph)

Me:  What about this?  What’s going on in this photograph?

Em:  Dr. Halper.

Me:  What’s he doing?

Em:  Just Toni Karlsrud.

Me:  Is that Dr. Karlsrud?

Em:  Nooooo!  (Laughing) Dr. Halper.

A:  What’s happenig to you?

Em:  (Touching photograph.)  Goes beep, beep, beep, beep.

A:  You’re having a QEEG done.  It measures your brain waves.

(Emma gets up and walks away.)

A:  Emmy!  Come back!

Em:  Where are you going?

A:  Emmy!  Come back!

(I follow her into the other room where Richard is.)

A:  Hey Em, do you know why you’re having a QEEG done?

Em:  Now goes beep, beep, beep…  (while she says this she is touching various points on her head where the electrodes are placed.)  beep, beep, beep, beep… (she touches her arm) beep.

A:  They don’t put one on your arm!

Em:  (Laughs) Beep!

A:  Do you know why this is being done to you?

Em:  Beep, beep, beep, beep.

A:  It’s looking at your brain.  It measures your brain waves.

Em:  Beep, beep.

A:  Do you like going to see Dr. Halper and having a QEEG?

Em:  Yeah!

A:  Should we go pick out what you’re going to wear today?

Em:  Yeah, sit for one more minute.

A:  Okay.

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.