Sunday, August 31, 2014

Two Months Post Stem Cell Treatment

We have been hesitant to post this blog as we have felt great responsibility to those who will be reading it and looking to it for advice as weather or not to get their own stem cell treatment.  We have wanted to post results that were noted by other medical professionals and not just from us as parents with anecdotal evidence.  However, much of what we note is anecdotal evidence as there are not currently any scientific experiments to empirically test the risks or benefits of stem cells on children with Spina Bifida or the host of other diagnosis that Hayden has. You can read about and talk to others families/individuals with multiple similar experiences as ours.  To date, we have not yet communicated with anyone that has had a bad outcome after having undergone stem cell treatment.  Please see the disclaimer that we have noted below that is also referenced on the Nova Cells Institute web page.
Since Hayden's Stem Cell Treatment in Mexico at the end of June, we have seen a lot of progress with him as we keep an open mind to what we are observing.  Grace and Abel of Nova Cells have been wonderful to continue and to carefully follow up with us as to the progress of Hayden.  The staff and facilities were fantastic.  We were embraced by the culture and the staff.  They have helped us to break through our fears and start the stem cell treatment process.
Testing out sensory issues one day post op and using right hand to play in the sand.

As natural skeptics and analytical people, we have had some doubts as to correlating what we were observing was directly the result of the stem cells or if it were natural developmental progression.  With typically developing children, you expect natural progression.  With Hayden, progression is earned.  Upon our return and thorough testing, our pediatric neuropsycologist has stated that Hayden is to be treated similarly to a person with traumatic brain injury and to seek intensive therapy.  The whole written report is to be summarized and updated at a later date as it takes 3 weeks to get the final report.  He also has similar neurologic conditions to someone that suffers from ALS (like those ice bucket challenges) Symptoms often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies.

We did not hope for or believe that the stem cell treatment would work as a wide sweeping miracle cure but expect to note and document improvement for 4-6 months post treatment as it can take a while for the stem cells to complete this single treatment of 5 blood type matched & donated umbilical cords to do their work in his system.
lumbar puncture where they administer the stem cells
So far, Scott has kept a record of the progress since his treatment with the various areas of function namely cognition, improved balance and increased motor skills from the dates below:

6/29-7/4:  One week post operation:  Trip to Sea World and Disneyland for national Spina Bifida Association convention.  He has increased daily endurance and stamina.  Click here to see the family updated picture blog on this trip: Texas Triggs blog

7/15:  Hayden has most noticeably begun to initiate a greater dialog speaking and initiating conversation, wants and communicating humor.  Previously, Hayden would respond with prompting to someone if his was spoken to.  Now he is initiating asking for food, to play his iPad and telling us when he is tired.  The biggest observation is that he speaking in complete sentences, which we have never consistently seen before.  His pitch and tone in his voice is stronger and clearer to understand.  Every therapist, PT, OT and nurse has noticed that is the most visible improvement.  Stem cell therapy for Ataxia (no development of the cerebellum part of the brain) can bring improvements in speech, swallowing and mental alertness all of which are the most noticeable at this point.  He has noted measured improvement from his OT with balance and protective reflexes which were not present prior to the treatment.

You Tube Channel where I have linked several videos of Hayden's evaluations before and after.


protective reflexes and balance noticeably weaker

Timid driving before stem cells we need an after video to show you just how confident he is now and capable of going for a long distance.

The three that I have posted on this blog are of his reflexes and his marked increase in speech & increased fine motor skills 2 weeks post stem cell treatment.


Hayden also attended a week long cowboy camp at the Red Arena that provides hippotherapy (horse physical therapy).  He loves the horses and got to ride his favorite Fiord horse, Hans, for the week.  He loved every minute of it and we loved seeing his happiness shine through.
Horse Camp with big sister Hanna & friends
Cowboy Hayden in the Red Arena round up rodeo & fundraiser

7/17:  Hayden has increased body awareness.  He is noticing and describes where his pain is whether it is in be in his back, arms, legs etc.  It is a bit of a mixed blessing to get sensation where you haven't had much before.  He is communicating getting sensation expressed as pain in his lower legs (below his knees) and right hand (helper hand as he is left hand dominate).  The nerve awakening creates pain/discomfort.  Hayden complains about this when he does his standing therapy.  This is a mainly a great thing as well as we are seeing increased circulation in his feet.  Hayden is also able to slightly move his toes and has some reflexes as he jerked his foot back for the first time clipping his toenails.

7/20: Hayden did great during our 1st walk in our new neighborhood.  He was able to drive his power chair almost completely unassisted.  Most of the time he just needed a little encouragement.  This is a wonderful milestone as it has not been easy for him.  Cognitively he seems to be picking it up easier and is not discouraged.  He has to use fine motor skills to use the joystick to drive the chair that can that can go pretty fast.  He has struggled with reflexes and balance so coordinating when to start and stop the chair has been difficult.

We took his power chair the last weekend in July to the Texas Spina Bifida Day at Morgans Wonderland and he did great.  He is able to go fast and he shouted, "I feel the wind in my hair!" He has learned to manipulate the chair down and up higher so he can see over people and grab things he could not before.  Seeing Hayden gain even more independence is our goal and we will continue to strive for independence.

7/22:  Continued increased vocabulary.  Hayden is engaging in conversation, rather than just being a "spectator" he is contributing to the conversation.  He is using new words, that absolutely crack us up.  
We were in our new pool the other day and Hanna splashed him with water and he said "that is just plain rude ".  Since he has noticeably increased sensation in his right hand, he continues saying it hurts and asks for it to be massaged.  Hayden's response is, "oh that feels great".  He also did this two days after his treatment.  Tonight he said that when I was cathing him that it hurts.  Normally I would react differently to this, but I know he has increase sensation and can feel the cath.  This also makes it more difficult to cath as his sphincter is reacting and making it harder to pass.  He tells me to be extra careful.  Now this is a normal part of his routine, but once again it is good to know of the increased sensation he is feeling throughout his body.
He has completely outgrown his RGOs on the left that are not a year old, HKAFOs from when he was 3 and his 1 year AFOs.  His growth has been pretty slow especially in the feet, but with his g-tube and tethered cord surgery he has had a growth spurt.

Increased appetite:  He is again willing to try reintroducing new food to smell and taste.  He asks for food regularly and his blended tube feeding is more complex with a large variety of ingredients.

Takes verbal directions:  His therapists have noticed a gain in spacial awareness.  I can give Hayden a chore and he will listen, initiate and follow through.

Everyday we see him getting stronger using his manual wheelchair.  I was observing him the other day and you could see his focus and his arms working extra hard to propel him as fast as he could.  His cognitive awareness has increased as he seems more aware of his surroundings.

I know that our Lord and Savior Jesus Christ has blessed our family through this entire experience.  How blessed we have have been by the Lord and guided to the good doctors and Nova team as well to provide this treatment for him.  I know with continuted therapy and encouragement that Hayden will be able to accomplish so much in his life.  What a blessing this experience has been and will continue to be as we see wonderful progress with Hayden.

With the improvement we have seen, we know that he could benefit from repeated treatments and continued daily therapy.  Most importantly we have noted NO NEGATIVE side effects from the surgery or treatment other than the earlier noted effects from coming out of anesthesia (his typical anesthesia nausia/vomiting).  We thank you with our deepest gratitude for those of you who financially supported us on this pioneering stem cell journey.  We believe that he will need more treatments that come with a large expense but putting a price on cognitive and motor function and increased quality of life is priceless.  If you know of any corporate donors that may want to sponsor his next stem cell treatment please show them this wonderful pioneer.

*Spina Bifida clinic is in September and we hope to see if the doctors notice any marked improvement in the imaging and overall

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