Keegan’s CP Blog

Regressions

May 27th, 2009

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

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