Ok, so first off I have to apologize for not updating sooner. It has been very hectic here. We have more appointments now then we did when Keegan was a preemie. There’s a long list of updates so bear with me if I bounce around. Here goes…we met with Keegan’s neurologist to discuss his MRI and spinal series finally. We will be doing another MRI in September to check to see if the “enhancement” found in the meninges (covering of the brain) is still there. We have gained a few new doctors…a neurosurgeon and a urologist. Initially, Keegan’s neurologist was not worried about the MRI of the spine but has since changed her mind due to the fact that Keegan is now presenting with difficulties that appear to be related to the spinal issue. Due to the decrease in balance and coordination, the leg length discrepancy, and the fact that he is now losing bladder control, we are seeing a neurosurgeon to address this. We had our first appt about 2 weeks ago…he referred us to a urologist first to rule out any bladder condition (being that the bladder is a muscle and Keegan has cerebral palsy). We saw the urologist for the first time last week. They did an ultrasound of the kidneys and bladder (both pre void and post void). The urologist believes that the bladder function loss is due to the difficulties with the spine. Keegan has developed what is known as a low lying conus medullaris. By definition, Keegan’s spinal cord is now too long. The spinal cord should terminate at L1-L2 vertebrae leaving the nerve endings to dangle in the L2-L3 vertebrae. Because his terminates between L2-L3, it is compressing the nerve endings; hence interefering with lower extremity sensation. We meet with the neurosurgeon again this week to discuss spinal surgery to repair this problem. Also to note, while seeing the urologist, Keegan appears to have developed a kidney stone in his left kidney. We are scheduled for an abdominal and pelvic CAT scan on Friday. I will continue to keep everyone updated as we have more information. So, that is where we stand as far as a medical point. I would like to point out that although we had a rough start getting input with the doctors in China, they have been in contact with us and we are sending reports and collaberating on the issues as they arise. We will continue to update keegan’s condition monthly. Thank you for all of the prayers and support.
July 27th, 2009
We had our MRI/Spinal series done last Friday. We will be seeing the neurologist at the end of the month to have a more in depth discussion about the results. I guess you could say it’s a good news/bad news situation. The GOOD news is that there are no tumors!!! Thank God! The bad news is that the meninges (covering of the brain) is showing what they call “enhancement”, which could be due to either an infection in the brain, inflammation in the brain, or changes in Cerebral spinal fluid from the lumbar punctures. At this point, the neurologist reviewed Keegan’s MRI with a neurosurgeon and they are recommending another scan in 3 months to evaluate the situation. She also has some other recommendations that we will discuss at our appointment so I will keep you all posted. NOT GOOD NEWS!!!! So, here we sit…having no idea what’s going on in that head of his, hoping that all will be ok in the end. Keep the prayers going…we could use all the help we can get. As far as the spinal series, it was noted that Keegan’s spinal cord goes to a lower level (between L2-L3). According to our neurologist it usually terminates at L1-L2 but she believes this is not a significant finding. I have to say, this is all very upsetting news…quite different from what we were told we would see within 3-6 months post stem cells. According to the doctors in China, Keegan would have full muscle control at this point. It is quite the opposite. We’ve gained a brace and a physical therapist. There has been no improvement in motor skills…his balance and coordination are horrible (hence the broken tooth), and his fine motor has shown no improvement at all. We do not have any positive things to report which is heartbreaking. To watch your child regress after a treatment that was suppose to help is so devastating. We are hoping, with our team of therapists on board and the doctors all monitoring Keegan, that we will begin to progress in the coming months. Thank you to all who continue the prayers.
June 11th, 2009
Well, it has been 6 months from Keegan’s last lumbar puncture and it’s time for a general update. For those following the blog, I will do a quick overview. We saw initial improvements in Keegan’s eye contact, social skills, vocalization, and increased focus to tasks at hand. These improvements, however, were followed by regression. Keegan’s eye contact and vocalizations decreased and his obsessive behaviors became so bad that they interfered with daily life. He lost all ability to focus on tasks at hand and lost previously mastered skills such as matching like colors and pictures and identifying objects out of a field of three when asked. He regressed in his daily potty routine at school and his ability to answer questions appropriately decreased significantly due to his obsessive behaviors (as reported by both his speech therapist and special education teacher). He also became frustrated easily and began to bite himself in response to his frustration, a behavior that had long since disappeared. Because of this, Keegan’s pediatrician had to increase his medication to help decrease these behaviors. Also, we have had orthopedic issues where Keegan’s right leg grew longer than his left so he is now braced almost up to his knee on a daily basis. So, where do we stand now? At this point in time, we have increased Keegan’s therapies to five days a week. This includes hours upon hours of one on one habilitation on a daily basis. He also receives speech therapy twice a week and started back with occupational and physical therapy this week. Keegan has not needed physical therapy since 2005. We are hoping with all these services in place that we will begin to move forward from here. I would like to note that we have received another e-mail from Dr. Hu (the CEO of Beike) and he has been very cooperative, stating he would also like to assist us in finding out what has caused Keegan’s regressions. Dr. Hu has invitied us back at Beike’s expense for further treatment and evaluation. We are discussing this with Keegan’s doctors here and are trying to decide what is in the best interest of our son. At this point, we do not have answers but will continue to search. Please keep us in your prayers.
Quinn and Kerry
June 9th, 2009
Thousands of dollars later, between dental surgery, insurance deductibles, bloodwork, doctor appointments, and braces…we are now able to eat without pain and walk without falling. YEA for Keegan! Next up…MRI and spinal…that should be fun! Still no support or suggestions or medical information from China. Amazing how “IMPORTANT” we are while in China, how supportive the staff was and how “INSIGNIFICANT” we are now that we are back home. Complete alienation seems to be the stance China has taken.
Quinn and Kerry Moulesong
June 1st, 2009
Well Keegan’s acquired a new brace since we’ve returned from China. Not so thrilled with this but it is a necessity. His right leg is now longer than the left so he has a lift on his brace to equal out the difference. The brace also extends further up the leg because now there is a tightness in his left leg and we will be looking at getting physical therapy again (which he has not needed in over 5 years). I’m telling you..it has been a nightmare since we’ve returned. We’ve spent more time at the doctors in the last few month than the last few years. Just went in on May 21st to have dental surgery (fell and broke my front permanent tooth in half), finally got my brace in Friday, and have had numerous amounts of blood work done prior to my next round of tests, which will be a full MRI and spinal series, with and without contrast so Keegan will have to undergo anesthesia again. The MRI and spinal series is scheduled for June 5th so keep us in your prayers.
Quinn and Kerry
June 1st, 2009
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”
May 28th, 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
May 27th, 2009
