Archive for May, 2009

Response from China

Here is the response China Gave us. Apparently, something as simple as a Viral cold can defeat the entire stem cell procedure…AMAZING since the cells are immune boosting cells and while they state that they would give Keegan another round of treatments free, China is unwilling to assist in our travel expenses.(The thousands we spent the first time is dismissed)  I guess when Beike stated “The company is comitted to putting it’s full support in doing anything we can to help resolve this situation with Keegan” they left out “as long as we don’t have to pay out any money or refund yours” I do not call this “Full support” by any means. How disappointing….for a company who prides themselves on their successes, to simply dismiss their failures. It is obvious that the only way we are going to “get to the bottom of why keegan’s regression occurred” is at our further expense. This e-mail below is the companies CEO.

“Dear Kerry and Quinn,

Thank you again for the chance to talk with you on the phone. As I mentioned, please believe me when I say that we want to help. We first also need to get to the bottom of why Keegan’s regression occurred.

We understand your situation. Any parent facing this problem would be traumatized. And I know from all the people in Hangzhou hospital who worked with you and Keegan, that they also feel personally very hurt and sad that Keegan’s condition took a turn for the worse after all seemed to be going well.

With some exceptions, most of the 5,000 patients we’ve treated say they benefited from the treatment. This is also the case in autism and CP. We’ve never before had a report of such a regression as Keegan’s following treatment. Some regressions have occurred – where the gains made were lost, but not worse than before treatment – and these few cases suggested a link to a viral infection picked up after treatment.

Finding out what have happened in Keegan’s case requires us to look at every possibility. Some people in the US have advised you that it may be due either to the stem cells or to the use of a corticosteroid. We ask you to look at all options, anything that can help get an answer. This is no different than the procedure if a side-effect is reported after use of a drug. In the end, the answer may not be clear-cut, but we have to go at this with an open mind.

This is why we also have to include the possibility of a stem-cell-related reaction – everything is potentially responsible until it can be logically ruled out. We don’t – from our experience – believe that this is the most likely cause, and are confident that tumors are not involved. However, Keegan’s case is unique so we must check everything.

All of these things, the cells, the infection, any dietary factors and anything else you can think of (even if there isn’t an obvious link) have to be looked at. If, after looking at the whole situation, it looks like Keegan could benefit from a second series of stem-cell treatments, as mentioned on the phone, we’re also happy to make it happen.”

“Your sincerely, Sean Hu”

4 comments May 28th, 2009

Regressions

I’d just like to do a quick update here to let everyone know what’s going on. Keegan regressed tremendously upon returning to the states. We did see some initial gains (better eye contact, a few words with increased vocalizations, more social, more appropriate play and better focus on tasks at hand). All of these skills have disappeared and we are having a lot of difficulties. Keegan’s therapists and teachers also report major regressions in all areas such as cognitivie (following directions), potty training, motor skills and self help skills. His obsessive behaviors have increased so much that Keegan’s pediatrician had to increase his medicine to help control those behaviors.  Another problem to note is that although we were told Keegan would have full muscle control by 3 months, that is not the case. In actuality, Keegan is now having orthopedic problems we have not encountered before. He recently saw an ortho…his right leg is now 2 cm (1/4″) longer than the left and Keegan will require a lift and brace (to his knee) to help him balance. He’s falling all the time because of this & broke his front adult tooth. That required dental surgery to on 5/21/09 to repair. Also to note, none of the doctors in China can explain his regression. We have been told it’s not the stem cell treatment…although we find that hard to believe since the doctors in China are concerned and awaiting his MRI with spinal series (scheduled June 5th, 2009) to check for TUMORS. It has been an absolute nightmare trying to get educated answers to our questions while our son deteriorates further. We still do not have any definitive answers but will continue to pursue in hopes of helping our son. We urge anyone considering this treatment to research completely and review the guidelines by the NIH and ISSCR (International Society for stem cell research) Here’s their website…

http://www.isscr.org/clinical_trans/pdfs/ISSCRPatientHandbook.pdf

I noted, as many of you will also, prior to our departure to china, while we were reading the patient blogs we noticed something in common….no one posted after returning home. Virtually no one continued the blog, everyone fell silent. At the time this raised a flag for us so we decided no matter what happens, we will continue the posts for future parents. I am beginning to realize why no one continued …

Please keep our son in your prayers.

Quinn and Kerry Moulesong

2 comments May 27th, 2009


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