Apologies to all that follow this blog and are going to be notified of this post. I've posted a message on an Autism discussion board and my post was too long to fit, so I'm posting it here and posting a link there. Feel free to disregard...
I recently looked into the process of stem cell therapy for Charlie. There are several cases of kids going out of the country to receive treatment for Autism. I've found examples of centers in China, India, Panama, Costa Rica, and more. I decided to do a little investigation into what it might take, the ethicalities, and all that, so I emailed a highly renowned place in China called Beike Biotech (http://www.beikebiotech.com/). Here's the response I received:
Thank you for your inquiry about stem cell treatment for Charles. My name is Casey and I will be the patient service representative assisting you through the medical and registration process. My job is to make the registration process as simple as possible and answer any questions you may have.
Below, I am providing some general information about our treatments followed by information more specific to your inquiry. I have also attached to this email information and press booklets. The Beike Treatment Guide booklet contains more specific treatment and registration information and you can find many news stories about our past patients in the Beike General Press booklet. Also, we are always uploading newly completed video interviews of patients of all diseases. You can see a collection of these video interviews at: http://vimeo.com/user290654/videos. Please let me know any questions you may have after reviewing these booklets, the patient videos, and the email below.
While stem cell treatment is still a very new science, our stem cells have been used to treat over 6000 patients with various diseases in more than twenty hospitals. Since 2006, over 1100 of these patients have come from countries outside China and we are currently offering treatment to international patients at five centers in China and one center in Bangkok, Thailand. A majority of the patients treated, depending on the disease and/or injury, state they regain some type of function in terms of movement, balance, sensation, vision, and body control.
Our patients are treated using stem cells from the umbilical cord, umbilical cord blood, and/or the patient’s own bone marrow. Throughout the process, the umbilical cord blood stem cells are never frozen and are kept fresh to ensure the cells help heal to their full potential. For most diseases and injuries, we may recommend 5-8 stem cell injections. Treatment takes about one month and depending on the number of injections and treatment center, the cost of treatment ranges from US$17,000 to US$34,000. After our doctors review medical information and make a treatment recommendation, I can then discuss more specifically the cost of the proposed treatment.
I have provided below some links to past Autism patient contacts, experiences, news articles, and blogs that we encourage you to review.
Aine is a young girl from Ireland that received treatment in Qingdao in July 2009 for both Autism and Epilepsy. The family kept a blog during the treatment and you can read their updates by using the link provided below. Aine's mother, Caroline is very open to speaking with other parents interested in treatment and is happy to answer any questions about her daughter's condition and their experience living for a month in China. Aine's and Caroline's blog and email addresses are below.
Caroline's Email Address: email@example.com
Aine's Blog Address: http://stemcellschina.com/blog/aine
Hagan was born 2003 and came for treatment in March of this year. Since his treatment, his mother Aliya has noticed very big improvements in his speech, behavior, and understanding of the verbal language. She is interested to speak with parents of other autism children that are considering treatment. Please feel free to email her and ask any questions you may have about her and her son's experience. Her email address is firstname.lastname@example.org
Calsun was our first patient to be treated with autism. You can read more about his treatment and resulting improvements on his patient experience page at http://www.stemcellschina.com/index.php/en/autism-mr-wang . His poor social skills improved after stem cell therapy, allowing him to speak in whole sentences. His attention spanned improved so that he could attended a normal school.
Maria is a child from Romania and will be returning this year for her third treatment. Before coming for treatment she faced learning, social interaction and communication problems. After the stem cell therapy she became more relaxed, socially more active and her learning ability improved. To read more about Maria's improvements please go to http://www.stemcellschina.com/index.php/en/autism-ms-maria .
Mitchell is an Autism patient from Australia who was diagnosed with Autism after suffering from bronchiolitis right after birth . He was very hyperactivte and and after our treatment his parents stated that he calmed down a lot and became more aware of his social surroundings. You can read up on Michell's experience at http://www.stemcellschina.com/index.php/en/autism-mr-pacis .
Mark Yu developed Autism after a MMR vaccination at the age of 1 1/2 years. After coming for treatment he showed improved behavioural and communicative skills. He returned for treatment twice and you can read his experience at http://www.stemcellschina.com/index.php/en/autism-mr-yu .
Mason Badger is another patient that has returned for treatment multiple times. Below is an article written about him before he came for treatment. This patient had issues related to muscle tone and his mother has stated he had improvements in those areas.
Mason’s News Article: http://www.news-tribune.net/local/local_story_163105132.html
Zach is a patient that has hypotonia as a secondary symtopm. His mother, Olifia, is very open about discussing her son’s experience and you should feel free to email her any questions you might have.
Olifia’s Email Address: email@example.com
Finally there is Megan, a young girl with Septo Optic Dysplasia from Northern Ireland. I share Megan's story with you because besides her vision problems, she also displayed behaviours similar to those seen in children with autism spectrum disorder. You can now view Megan experience page at stemcellschina and also her father full length interview. I hope this is helpful and informative to watch. The links to Megan's patient experience and video are below:
Patient Experience: http://www. stemcellschina.com/index.php/ en/patient-experiences/optic- nerve-hypoplasia/1197-traynor- sod
Video: http://vimeo.com/ 6411138
I am providing you with the link to our online Initial Medical Information Form. Please go to the provided web address and fill out the form with as much medical information as possible (I can provide a Microsoft Word version of this form if you have any trouble accessing it). There is no cost or obligation to receive treatment when this form is submitted to us. It will only be used by our medical staff to help provide further treatment recommendations and advice. You will be sent a confirmation from us when the form has been received. As soon as you wish and are comfortable doing so, please submit this form. Please note it usually takes 1-3 business days for the doctors to review the medical information and it is possible they will request more medical information if needed. If the doctors confirm that treatment can be provided, I can then continue assisting you with the registration. The Initial Medical Information form can be accessed by using the following web address: https://stemcells.wufoo.com/forms/beike-medical-form
This medical form contains a section labeled “Additional Medical Files”. In this section, you will be able to upload test summaries and doctor reports from you hospital directly into the online medical form. For all patients, our doctors will need to review discharge summary of important treatment (such as any surgeries or hospital stays), a diagnosis report from a doctor, and/or a medical report from a doctor about the patient's current condition. For Autism, there are additional mandatory medical files our doctors will need to review. These are listed below. If you have trouble receiving these documents or sending them to us, please let us know.
Mandatory Medical Documents: Test or doctor's summary of a brain MRI or CT.
If Applicable: ADIR, ADOS.
We know that many patients and caregivers are interested in visiting a treatment center. Our treatment center coordinators can provide patients with a tour typically lasting 30 minutes to one hour. If you are interested in visiting a treatment center, please let me know and I can provide you with all the necessary instructions for arranging a visitation time. Please note that the visitation must be arranged and confirmed at least 15 days beforehand and the visitation can only be arranged after the patient's full medical information has been reviewed by our medical department doctors.
We encourage you to watch this video so you can learn more about the stem cells and hospital environment. The video is located at: http://vimeo.com/10196529
I hope this information has been helpful. Please let me know how I can assist you further and do not hesitate to send me any questions you may have. You may email me or call any time.
If anyone is interested, I'd suggest doing some research and reaching out to these places. I've heard of this therapy costing as low as $10,000, but I'm not sure where and if that was at an earlier time.
Best of luck.
Thursday, March 4, 2010
Monday, March 1, 2010
Yes, it's been a while.... what, about 9 months?
I could make every type of excuse, but to be honest, this has just not been a priority. It's been a bit of a whirlwind 9 months. We've gone from losing jobs to starting companies and thrown in a new baby for good measure.
But, like any good addict, we've returned.
So, let me take a moment and update everyone on Charlie. At the last time of posting, we were having some serious problems with Charlie's seizures. We were dealing with his meds, on and off, what to do next, etc, etc, etc. The doctors wanted us to do the ketogenic diet but weren't really sure. We were working with our DAN doctor and trying all sorts of who know whats enzymes and supplements, and just nothing seemed to be working. We had taken him down to no meds for a little while to more or less 'clear out his system.' The results created some of the worst days of seizures we'd had. He was having 3-5 grand mal seizures a day, sometimes just starting to wake up after several hours of being passed out on the couch, only to have another one and drop again.
Shortly before our last post, we decided to resume the only med that had ever really had a positive effect on him - B12 shots. We started them up with the intention of ramping back up his to all his meds. As before, we immediately saw a 'softening' of the seizures and they were coming less frequently -- about one every few days.
We stuck with this over the course of 2 weeks and then one day we just forgot to give them to him. We went for about 10 days when we realized we hadn't been giving him anything. We actually hadn't seen any seizures in that time so I figured I'd just let it run and see what happened.... and here we are.
We're now officially 8+ months without a seizure from a boy that has had at least one seizure (often times 10-20) a week since he was one year old!!! AWESOME! We would've posted this sooner, but really we just couldn't believe that it was real. After three years of dealing with these, it just seemed too good to be true.
Steff and I still have dreams about Charlie seizing. I imagine it will take some time to really believe that this part of our life is behind us. But thank goodness we're seizure free.
So, with the seizures behind us, we've moved on to dealing with some of the other issues, like behavior and speech. He's now 4 and a half years old and is essentially non-verbal. His behavior is still crappy. That's next problem to tackle.
On other fronts, we've officially launched our new company that sells autism toys and other toys for kids with special needs (and kids without special needs as well).
Oh yeah... and we've had our baby - Lucy Kate McGhie.