Alexander Schryver -- Neuro-Degenerative Disorder 列印 E-mail
腦性麻痺
週五, 24 七月 2009 09:40
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StemCellsChina would like to thank Alexander's mother, Gabriela, for giving us this Patient Experience.

Watch Alex's video at Vimeo here.

 

Condition

Diagnosed with Neuro-degenerative disorder in April 2006 (as a 1 year old)

 

Course of Treatment in China

Nine transplants of umbilical cord blood stem cells, one via IV and eight via lumbar puncture. Daily physio-therapy, electro-wave therapy and acupuncture

 

Reason for Coming for Treatment

Alex was a healthy boy who was developing great until he received a DT (Tetanus Diptheria) shot at 9 months of age (Jan '06).  Within two weeks of receiving the vaccine, he started losing a lot of his developmental milestones.  After two months (Mar '06) a majority of these milestones were gone.  He was no longer able to walk, talk, sit up, reach, grasp, etc.  One month later (Apr '06) he stopped holding his head up. 

An MRI confirmed degeneration of the white matter of the brain and he was subsequently diagnosed with neuro-degenerative disorder.  At that time, he started to scream at all times of day and night and be generally very unhappy with anything around him.  He was put on Nitrazepam for spasticity (he was tensing up a lot - probably out of frustration at not being able to do things he could before) and Melatonin for sleep.  In June 2008, Alex received his wheelchair.  He continued to be very spastic and required assistance similar to that of an infant. 

 

Treatment in China

We initially signed up for 8 stem cell transplants.  The first one was received through the IV.  In addition to stem cell therapy, we also received excellent physio-therapy, electro-wave therapy and acupuncture. 

I started seeing progress in Alex almost immediately but held back as I wanted to make sure it was not just my wishes and desires to see improvement--but that it was true and real.  All other transplants were done as LP (lumbar puncture - into the spine).  It made sense to give the stem cells via the best possible point of insertion, in order to make their trip to the brain most successful. 

After the second transplant, I started seeing more and more improvements in Alex: speech, alertness, holding his head up better and longer, etc.  We discontinued Melatonin as he started to sleep better (he was also sleeping in the same bed as me though).  After the fifth transplant, we requested to have one extra transplant done. So overall, we ended up getting nine injections.  We stayed from February 2nd to March 17th, 2009.

 

Condition After Treatment

Alex continued to progress after the treatment period. I obtained the electro-wave acupuncture machine (bought it on eBay) and it works really well.  Alex and I tend to take the electro-wave treatments at the same time, as we purchased extra patches. That way I also know the strength of the waves that are going to him. We started occupational and physio-therapy within a couple of weeks of our return from China. Alex really likes his therapists.

Areas I have seen improvement in were:  speech - he was producing new sounds that he was able to prior to the 9 month vaccine, eating better (chunkier food, chewing longer and more evidently), stronger, reaching for objects and people, trying to grasp, better eyesight, able to communicate to me using actions (looks up for No, smiles for Yes), able to recognize me from much further away, trying to crawl really hard, much happier, etc.

 

Condition Today

Alex continued to improve over the following 3 months. These are all small but important improvements. He reaches for things much more, he learned to hit switches to activate songs and toys (he loves his bubble-making machine), he enjoys jumping around when I hold him under his armpits, loves trying to walk although his legs go into scissors, smiles a lot, eats sandwiches, chicken wings, hamburgers, fishburgers, etc (I am trying to fatten him up), and many more improvements.  

From a stranger's point of view, many of the improvements might not be noticeable, but to me - I see even the slightest.

After we returned from China, I started weening Alex off of Nitrazepam (for spasticity).  Today, he is using ZERO medications of any kind.

The full progress report outlining his condition before the vaccine, another before our trip to China, documenting his condition after our return from China and another today is available on our website at www.kidsofhope.ca.
We did a new MRI on June 23, 2009. We got a verbal opinion from the neurologist that it is improved and that it looks "fine".  We are waiting for the written report.

A recent setback for us was discovering that Alex has both hips dislocated.  We have hip surgeries scheduled for July 24 and August 27 and we are very hopeful that after these surgeries, he will be able to use his legs better.  He is already trying to crawl and drag himself, but tends to use one of his legs more than the other and his legs tend to go in scissor shape due to dislocation.  We believe that after he recovers from the surgeries, he will be at a great advantage.

It is our intent to return to China by next year.

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