Monday, December 10, 2007

Dan's progress thus far! Great News!!

I just wanted everyone to know that I took a measurement tonight of Dan's lip movement capability. We took the last measurement of this ability on September 28th. This is a report of his progress-- !!

The open / close mouth exercise went from 48 to 60 times a minute .. this is a 25% increase (good job Dan!)

The pucker / smile exercise he was able to improve from 14 times a minute to 30 times a minute. This is over 100% improvement!!

Exciting measurement! I took this same measurement over two years ago when we were doing a Hyperbaric Oxygenation trial and that measurement was 46 for open/ close mouth and 19 on the pucker smile exercise, which was fairly close to the measurement taken in September. So the bottom line is that Dan did not make much improvement over a two year period, in fact in the measurement of pucker/ smile, he went down. Now just a little over two months, there is a significant improvement noted! I think things are happening here... :-)

I also read an article on the timing of using hyperbaric oxygenation (HBO) with a patient that has had a stem cell treatment. This explains the different phases of stem cell recovery in a very understandable way, and shows what happens during the subsequent months after the treatment.

Dan is now in the DIFFERENTION phase, and the new stem cells should have found their target, and have "moved in". They are now working on making the connections to the other neural cells around them. This is a critical time for good therapy, good food and good rest... (reminder - it is time for bed!).


-- In, "Kirshner Ross-Vaden"

After the injection the stem cells need time to migrate though the body and find their intended target. They find their target, such as the brain, by sensing certain chemicals released by damaged cells. Cells with damage have low levels of Oxygen and this state of Hypoxia prompts the cells to release these specific chemicals which are then sensed by the stem cells. Thus one would not want to do anything such as HBO just prior to the SCT or post SCT as this would increase the patients Oxygen levels and thus confuse the newly implanted stem cells. Migration and engraftment appear to transpire during the first 12 days following a treatment.

During the Engraftment period the stem cells which have now found their new home, begin to settle into the damaged tissue. One could consider the following analogy; they spent the first two weeks searching for a new home, moving in and setting up shop (as it were). After moving in they need a period during which they can unpack, figure out where to put their belongings, organize and simply get settled in. This would be the Engraftment phase which occurs most likely during the first two weeks following a treatment. Next comes the Differention phase. In keeping with the above analogy this would be the time that the Stem Cells would be looking for work near their new home. Figuring out what tasks need to be done around the new house and dividing up the daily chores. They now begin their work and this work takes a great deal of energy. This is the time to give them the support of extra Oxygen as this gives them the energy they need to get down to work and take care of business. This Differention phase begins once a stem cell has found a tissue niche and settled in. Thus the Differention phase may begin as early as 14 days post stem cell transplant.

Keep in mind that none of these time frames are set in stone; it is simply not that black and white. Where HBO comes into play each parent must decide for themselves what they feel is best. Researchers have said that they feel the treatment of the patient with HBO could be beneficial during the Differention phase but not before. Dr. Steenblock has stated that mild HBO may be of benefit post SCT and that this could safely begin at the top of the third month, a full two months post SCT.

Mild HBO could be defined as ATA's of 1.1 to 1.3 with less than 50% supplemental Oxygen given.

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