Spinal Muscular Atrophy

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elliemay

New member
My 2 year old daughter has Spinal Muscular Atrophy - Type II. We have taken her to The Dominican Republic for stem cell therapy. So far she has had 1 treatment. We have seen mild improvements in her since the treatment 3 months ago. Has anyone else with SMA had stem cell therapy out there? If stems cells are helping ALS patients it should therotically also help SMA patients.

Ellie May
 
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Jeannine

Pioneer Founding member
MarkNH

I'm not aware that any immuno-suppressant drugs are given with stem cells. There are growth factors included and stem cells

From the website:

The stem cells are obtained from umbilical cord blood placed into culture with appropriate nutrients and growth factors to form the specific cell lines needed for this treatment.

We were told to avoid red meat and alcohol and dairy and given a list of supplements to take for 6 months. All these supplements were over the counter and no prescriptions were provided.
 
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barbara

Pioneer Founding member
I honestly don't know

Mark - For ALS, I do know that treatment may be different. I believe the last two Ask the Doctor forums had some references to treatment for ALS but I don't believe that any comments were made as to exactly what the treatment involved. I would be happy to ask this on the next Ask the Doctor forum for you and I can make some personal inquiries as well if you would like. Just let me know.
 
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barbara

Pioneer Founding member
Mark - I took the liberty of asking a stem cell doctor that is treating a lot of ALS patients your question about immuno-suppressive drugs and this is his reply:




Yes, When using allogeneic stem cells (those not from the patient) it is important to give anti -rejection medicines to stop graft failure. Just putting in foreign cells with a competent immune system would have a probable engraftment failure. i.e. the stem cells would be for the most part killed by the host before they were accepted as self. Think of an organ transplant and how the individual needs to take anti-rejection medicine for 1-2 years...much less in the case of a cellular transplant. Thank you,
 
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elliemay

New member
SMA Update

Ellie has had 3 treatments now with Dr. Rader and is still improving at a slow and steady rate. She can now walk about 5' while just holding on to my fingers. She can walk up to 15' with a walker. She can also hold herself up for about 30 seconds when put into a crawling position. These are things that she has not done for about 1 year, when she started to regress.
Before our first treatment she was not able to roll over or hold her own bottle. Now she can pick up a full bottle and feed it to herself.
 
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elliemay

New member
SMA Update 2

My daughter is still continuing to improve. She has taken 14 steps independently and can reach her arms over her with very minimal difficulty. She also eats very well on her own. She can pick up an full glass of juice and drink it independently. She has a lot of energy and will stand almost all day at her play table.
 
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barbara

Pioneer Founding member
Thank you for the update. Did she have another treatment or is she continuing to improve without additional treatment?
 
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