July 1, 2013 1 Comment
February 28, 2012 20 Comments
I found this tee shirt for my son while shopping for a card for him at the Lifeway store here in Georgia. It says “I will be courageous”. If you are a parent of a child with autism I don’t need to explain to you why I bought it. It takes a lot of courage to face the world with autism. Happy Birthday My Son. You are courageous – and you have inspired me to take care of children all over the world and to never, never, never give up. I love you and hope and pray for the very best for you and always will.
WOW. I couldn’t begin to explain the last 18 years without a whole book. From an easy pregnancy and simple delivery you progressed as a sweet and happy baby boy right up until 8 months when that first ear infection struck. It didn’t want to go away easily and ultimately you needed tubes to drain the infection. Prior to that we tried a lot of antibiotics and none worked. We didn’t realize back then that you had a primary immune deficiency and couldn’t make enough IgM to defend your body.
I can’t even talk about the next year and all the things that happened. But your mother and I had to watch our precious boy change without understanding what was happening. The first time you pulled the pans out of the kitchen cabinets and banged on them it was cute. The next 20 times it was obvious something was wrong. And then you just didn’t seem to cry when you fell and hurt yourself. I had never seen that before.
The worst part of those early years was the horrific diarrhea that would actually burn your bottom within seconds. That was so sad and so hard to treat. Back in those days we understood so little about the gut connection to autism.
Ultimately, secretin ( a simple hormone) give IV made a huge difference in that problem. It was an immediate change and even got you the attention of Bernie Rimland and the National Enquirer. Your response to secretin made you an immediate hit with about 10 million readers of the Enquirer and neither your nor my life has been the same since.
Thanks to a meeting I was invited to at NIH, I met Prof Gupta from University of California – Irvine who suggested I consider IVIG for you. Intravenous immunogloblin made a huge difference as well – enough so that Prof Simon Murch from the Royal Free Hospital considered it life changing for you.
Over the years I have learned much about your health and in that process you have taught me so much about helping other children. You mother has never tired from helping you in this process and you have an amazing sister who loves you and cares for you.
Now you face being an adult and seeing the world through more than just the eyes of child. You are growing up but aren’t “grown-up”. You feel that and yet you want more say over your own life. It is coming, but you mother and I recognize you still need our support.
Bless you my son. I love you and pray you continue to inspire others to persist in their struggles like you have.
January 14, 2012 1 Comment
One on my many blessings is getting to know families from all over the World. At last count my patients come from 42 different countries. This is from a mother of a child treated at EmCell at the end of November 2011. I am inserting it here unedited, except where you see italics. Those are my additions for the sake of understanding. The family is from Serbia and their English is much, much better than my Serbian – which is zero. They have done everything to help their son imaginable and he made lots of progress in many areas except language. As you will read, he had next to no useful expressive language (verbally) prior to stem cell therapy. Within a few weeks he developed expressive language in sentences. I spoke to another family who know the boy and they are shocked by the changes in the last few weeks. In order for this to have happened this child had to have the language in his head, but the expression of the words was blocked by some interfering substance. Neuronal stem cells have not had time in my estimate – to enter the brain – create neurocircuitsry – form language connects from nothing – and then generate speech. All of this family’s hard work at therapy – ABA – and biomedical interventions had to create the language in his mind – but it was locked in and couldn’t be expressed.
This is by no means an unexpected problem with autism. Thanks to various forms of facilitated and electronic means – children with autism are telling us they are present but unable to connect to us with spoken words. But more on that after the comments from this mother from Serbia.
Dear Dr Bradstreet,
We finish with stem cell therapy 30 of November and I saw changes in my son’s spontaneous speech…for example….I yelled at him because he refused to listen to me when we learn (do our ABA lessons) and then he suddenly put fingers on his ears and said ‘Momy yell…yell….He wanted to say’ I cant hear you Momy…..I was thrilled!!! I ask him whose mother is Petrisha……whose father is Vlado….so he was bored ….and he answer me no more about family!!!! Before the (stem cell) therapy he had no spontaneous responses….(now) he speaks in sentences…answer in sentences….I ask him…Dusko are we going to learn(Because I do ABA 4 HOURS A DAY) and he answer “No because I want to play with Petra” (Petra is his sister) But he has problem with behavior……..he is more hiper than it was..before therapy…he still has stimming with hands and his voice….he start again to be out off control when we go out he is crying and crying when we dont want to buy him a favorit toy…..he start again to have tantrums….once when he was with his daddy in plane he repeated all the time…”I want to go to play with Sarah’s train”…..Sarah is his friend who has train that he like so much….and daddy couldnt make him stop……
Clearly we are a long way from finishing this child’s recovery process and stem cells are not magical. But this boy found his voice with stem cells and now other things are changing in his body and he is still learning how to self-regulate. He has struggled with hyperactivity and OCD type of behaviors for several years so these are not new symptoms. We are removing much of his medications and supplements to let his body adjust to the stem cells and will make further adjustments over time as well. Hopefully these other symptoms will be under control soon.
Elizabeth Bonker is another example of children letting us know they are not lost. I have had a blessing to get to know her over the last several years and her book (written with her mother) is a stirring reminder of why we can never give up on our children. You need to read this one. I AM IN HERE — I can just hear the internal language of this child screaming to out to be heard.
On this blog I have referenced the story of a 53 Italian woman that seeming awoke after she received and anti-TNF alpha medication. I truly believe TNF alpha may represent our most important adversary in recovery. I am posting it again to remind you about the story mentioned on several blogs from last year.
October 29, 2011 14 Comments
So just what is the process all about? After arrival at the clinic the nurses do their best to quickly get a urine specimen (not easy since we are all fasting) but seems most of our kids were successful in giving one. Then they draw blood – and in event he toughest cases they did great. After the that the physicians – generally 2-4 of them examine the patients. Once they have their history, physical and lab back they determine whether stem cells are appropriate and which combination of cells would be best.
Stem cells from this point of view are from one of three main types also known as germ layers: 1) ectoderm, 2) mesoderm, or 3) endoderm. In autism, the patients generally get all three stem types but the concentration may vary from patient to patient. the rationale is related to the need for brain, gut and immune healing. The graphic below can help to guide you through the cell types.
And to further help you see this process in stem cell development see this graphic.
One of the philosophies expressed by Prof Karpenko goes like this: stem cells from designer laboratory creations and embryonic cells created by artificial fertilization have no history of regulated function as healthy human cells. By contrast, fetal derived stem cells have been taught by the system how they should behave. This just means they have been given their regulatory instructions on how to act like a team player. He believes this is important and I tend to agree with him on this.
Immediate effects of stem cell transplantation
The doctors at the clinic informed me we would most likely see immediate effects which could last up to 10 days. These effects are thought to foreshadow future more permanent changes to come. This is an intriguing observation. My take is that these effects are largely mediated by cell signaling chemicals in the suspension of the stem cells – rather than by the direct action of stem cells. This would be especially true for the brain effects.
I was able to observe an immediate decrease in self-stimulation and hyperactivity in my step-son with his treatments. It was so profound that on the day we were supposed to get the second application (and it is nearly always a 2 day process separated by a day between) he actually asked to go to the clinic to see the doctors to get his shot. The physicians at EmCell claim they see this routinely where the children act much differently within 2 days. As hard as that is to accept, I was able to observe it first hand. Another immediate effect is improved appetite and energy. Also observed within this first few days in improved sensory integration and functioning – especially for touch and auditory dysfunctions. Exactly how this happens so fast is hard to understand but it may have a lot to do with anti-inflammatory effects or other cell mediators.
In my own case, I noted the ability to walk all over Kiev with out any knee pain or swelling. My right knee has had 11 operations secondary to football and snow skiing injuries. Normally it would swell significantly and also be very uncomfortable. It generally wake me up a few times at night with pain (I have had little to no knee pain since the procedure). I also observed a remarkable increase in exercise tolerance – and I was able to climb the 100 or so steps to the top of the hill where the giant “Motherland”: statue oversees the city of Kiev without any significant shortness of breath. These effects are interesting, but the clinicians at EmCell feel the main effects related to the transplant take place after 6 weeks.
I will keep you posted.
October 29, 2011 3 Comments
For many of us in Europe or the Americas it seems strange, even incredulous, that the leading and most experienced center in stem cell transplantation is in Kiev, Ukraine. However, it would be hard to spend any time with the clinicians at EmCell and not come away with that impression. All of the research from the late pioneer, Professor Smikodub, is published in Russian or Ukrainan. Only two of his scores of articles are present on medline (PubMed) and since few in the West read Cyrillic languages, much of it is lost to us. One thought that comes to mind is to translate all of the research and publications from the clinicians and scientists at EmCell and create a library where others can learn about the invaluable wisdom of the last 20 years.
Here a nurse observes the doctor as she injects stem cells into the saline drip of a patient with multiple-endocrine dysfunctions.
In talking to Professor Karpenko about the early years at EmCell, he was adamant Smikodub put so much thought into the process prior to first administering stem cells to humans that it has worked from the beginning. That is remarkable. All of the doctors and staff agree there have never been any serious adverse reactions to stem cell therapies using their process.
As with any human transplant the entire process is rigorously controlled and is the state-of-the-art process we all us for transfusion and tissue/organ transplantation. I felt confident enough to be treated for my post-disc herniation nerve damage and I will keep you posted if there is any change in that condition.
Where is the World’s research on complex disorders like cerebral palsy. Interestingly, Duke University, Medical College of Georgia and Northwestern University, all have an ongoing trial of autologous umbilical stem cells to treat cerebral palsy. Early responses from the Duke patients has been widely publicized. So it should come as no surprise that the clinicians at EmCell have been seeing similar results for nearly 20 years. They do not use cord blood stem cells and that is good thing since most of us have no access to cord blood.
I will post more on this later today –but for now the beautiful Fall weather and scenery in northern Georgia is calling.
October 25, 2011 1 Comment
Another interesting day in Kiev and with the staff at EmCell. In the morning I started the day out with more families starting their first course of stem cell therapies. This group included a breast cancer survivor with autoimmune problems and three children with autism and immune dysfunction. The youngest was 4 and she did much better than expected during the usual challenge of blood specimen collect and as usual the skilled nursing staff collected the specimen on the first try (not an easy feat for many of our children on the autism spectrum). They were successful in getting her IV infusion for round one of stem cells, but not without a major tantrum over having her arm held during the process. She was never in pain, but the emotional trauma of having someone restrain her arm was enough to trigger a major meltdown. Not that this is unusual and many of us who live with someone on the spectrum see just how easily they fall apart when the sensory environment and obsessive interests are not immediately satisfied.
The challenge for the doctors is they rightfully want to examine the non-sedated child, yet the child often is intolerant of the entire process. This faces all of use in clinical practice when we attempt our examinations and diagnostic/therapeutic interventions.
After this I spent the rest of the afternoon with Dr Karpenko learning about the rich heritage of the Ukrainian people and the City of Kiev.
Dr Karpenko escorted Aaron around a 3 hour walking tour of the city on his first day after stem cell therapy and he was remarkably calm and interested in the new surroundings.
Dominating the landscape of the city is this huge titanium monument to the victories painfully won in WWII. The statue reminds me to never, never, never give up with the battle to help children with autism.
And Kiev is not without its elegant European architecture. The orthodox churches, opera house and stylish cityscapes made for a pleasant adventure for our first post-transplantation adventure.
This is the famous Philharmonic house – reported to have the finest acoustics in the World.
And while this beautiful Orthodox cathedral appears to be centuries old it was built only 8 years ago and is a reconstruction of the original damaged structure. Without being overly metaphorical it is an interesting model for what we hope to accomplish with stem cells. Remodeling the old damaged structures with a new one which is exactly what it should have been.
Aaron was able to enjoy the remarkable diversity of cultures and food present in Kiev and this ethnic restaurant was a great experience for us all – even without french fries. I tried a traditional Cossack soup of millet, herbs and mouton (all organic) and on a rather cold day it was exactly what the doctor needed.
Later on Dr Karpenko and I exchanged our thoughts about stem cell therapies and agreed to carefully evaluate the progress of the children being treated so we could more properly describe the effects and therapeutic benefits. This conversation was recorded so in 6-9 months it can be part of the full story on this unique form of potential therapy for autism.
All for now – more to follow.
October 24, 2011 12 Comments
This Sunday I spent most of the day with Dr Karpenko, one of originators of the EmCell center and during the morning we both met with the clinicians who would carrying out the treatments on the patients. We reviewed medical histories and considered various stem cell mixtures to assist each patient with their individual needs. The families that came with me on this trip represent a diverse spectrum of challenges for the doctors – ranging from breast cancer (post chemotherapy) to autism, chronic fatigue syndrome, post traumatic injuries, and Lyme disease. The clinicians here have vast experience in treating many disorders. They have treated an estimated 100 children with autism (mostly from Europe and far more than I realized) and I believe they have more experience than any stem cell therapy center in the World. Dr Nouytska is reported to be the first clinician to treat any human disease (type 1 diabetes) with stem cells over 20 years ago. All of her colleagues: including Dr Sych (the neurologist – with an appropriate last name), Dr Hemchuk, Dr Klunnik and the others were incredibly patient with our high need, high demand patients. They were also very willing to learn from our clinical experiences with treating children with autism. The administrative assistant Yuliia (“Eula”) was organized and extremely proficient as a translator. She is also very passionate about stem cell therapies after her many years of work with EmCell and having seen so many benefits for the patients. Dr Karpenko with Joe (more on him to follow) hosted a traditional ethnic dinner with the families last night and Dr Karpenko patiently answered all of the parents very direct questions about stem cell therapies.
But none of this would be happening for these families right now if a big hearted American – Wisconsin born (Joe Maerske) hadn’t picked up the phone to talk to me about EmCell. Joe did his job of lowering my fears about this – at least to me – unknown group of clinicians and researchers. I am so glad he did. He rightly called it: these are warm and talented people who will do all they can to help what can be helped with the tools they have (specialty stem cells).
First let me say that many people have very little knowledge of Kiev, and I will put myself in the category as well. I have traveled all over western Europe, but this was my first trip to the central countries of Europe. So let me settle your curiosities and say Kiev is a modern city with one foot in the past and one in the future. Infrastructure enhancement and new construction is going on everywhere. Despite this, many parts of the city (like many cities) are still in need of significant repairs and modernization.
The only problem I have in Kiev is the same problem I have faced in Thailand and China (the alphabet). The Cyrillic alphabet is just different for me. I know enough Latin, French, German and Spanish to piece together most of my needs in western Europe, but the alphabet precludes me from doing that in Ukraine. However, we are guided through this process by wonderful people who are very skilled in English. The drivers who transport us back and forth are always on time and some speak English but they know exactly where to escort us for treatment and they are always on time. I will let the families give me comments to post (in the next few days) about this trip so you can know how their children with autism managed the long flight, time zones, the city and the treatments. But in summary they are all amazing their parents with how well they are tolerating the travel.
Below is a picture of my wife (Jennifer) taken yesterday from our hotel balcony in the old downtown area of the city. It is lovely and looks like any other modern city in Europe. I would have liked to post pictures about the hospital and the clinic, but I took those on my movie camera and left my cable at home. So I will take my still camera tomorrow and give you more perspectives on the process.
I start off again with the families early in the morning so I will conclude this post by letting you know I had no immediate side-effects from the stem cells transplantation (implanting) I had today for my own loss of cartilage in my knee and my post disc injury nerve damage in my legs. It will be an interesting test of the potency of these cells to see what my own progress is as well as that of the children with autism who are being treated at the same time. More tomorrow if the Kiev Ballet performance of Swan Lake doesn’t take up too much time. I hear it is every bit as good, if not better, than the Bolshoi in Moscow.