Attention Deficit Disorder-ADD or Attention Deficit Hyperactivity Disorder-ADHD
is certainly the most common of all childhood developmental disorders
and also has generated the greatest amount of controversy as far as
standards of diagnosis, treatment and parenting are concerned.
Undoubtedly, something that affects up to 5-10% of all children will
call for a great deal of attention. ADD or ADHD (most prefer the
second term but there are some kids who are attention deficit but not
markedly hyperactive), can seriously disrupt a child's well being and should be detected and treated as early as possible.
What is
often considered naughtiness is most often ADHD. In severe instances,
the child will be thought of as “uncontrollable”, “terribly
disobedient”, and perhaps also “unmanageable”. Hearing any of these
terms (or their many cognates) should indicate the need for a
professional evaluation.
If the ADHD is not detected earlier, once in school, teachers will notice the short
attention span and perhaps also the fidgetiness that goes with it and
may call for an evaluation. Children with ADHD are often as intelligent as (or more than) their peers but will lag behind in the developmental
testing due to the cumulative effects of the short attention span and easy distractibility. It is
not uncommon to find dyslexia and/or dyspraxia also showing up in a
detailed evaluation, but more commonly ADHD occurs alone. ADHD is now
thought to be a catch-all designation that includes at least 5 or 6
different types of disorders, but you can find out more about that in
your own research.
Common signs that we look for include:
Consistently not completing tasks.
Not listening or paying attention.
Keeps losing things.
Switches from one activity (or play) to another, more frequently than his/her peers.
Easily distractible.
Refuses to do things considered “boring” (including homework).
Acts without thinking, very impulsive.
Needs constant supervision.
Seems to have “too much” energy.
Climbs, jumps, runs, more often than peers.
May be short tempered.
Seems to fidget a lot, has difficulty sitting still.
Child can be inflexible, argumentative, and stubborn.
The professionals of course will have a much more detailed list and
lots of questions to ask about stuff like developmental milestones, but
if any of the above seem to apply to your child, do have a child
psychologist do a complete evaluation.
So, if you do have a child with ADHD what’s next? depending on the
age and the actual developmental level as well as the child’s own
personality and what types of symptoms are present, the professionals
will give you detailed instructions. It is also very important that you
do get into a support group with those who are also having to learn how
to effectively deal with ADHD.
Controversies are many, so here I’m just going to tell you what I
think and leave you to research the various issues and decide for
yourself.
In my experience medications are almost always avoidable, but here
the proviso is what the severity of ADHD is and what sort of a parents or caregivers you are. If you are
the type who finds all this difficult to accept and would rather not be
bothered, then perhaps you should ask your psychiatrist to help both you
and your child with some pills. Mostly, for ADHD a type of stimulant is used that
strangely seems to calm the kids down and help them to focus better. But, I do believe that with a
little care and the right support, your child probably can avoid needing
to be medicated.
You need to start a journal. Note down behaviors, good and bad as
they occur, as well as stuff like sleep timings, diet – quantity as well
as type, and how the child is coping with studies, feedback from teachers, achievements, and especially the developmental milestones.
ADHD is treatable.
Stay in close tough with the counselors, teachers and other
professionals who are going to be dealing with your child’s ADHD, share
ideas, ask questions and make suggestions. Find a team/school that both
you and your child are comfortable with and work together to sort things
out. We have found that in addition to counseling, occupational
therapy, sensory integration and yoga have all proved helpful. Treatment
is usually successful when done with a will to succeed. Your child may
always have the tendencies, but will slowly learn how to keep them under
control, how to concentrate better, and how to be better organized
about life and the various tasks that go into making one more
successful.
We pay a lot of attention to diet, but there are many who feel that
it’s not that big of a deal. Generally, in our experience, cutting carbs
and increasing mixed fats and proteins usually helps almost immediately
to modulate hyperactivity and more slowly also has an effect on
increasing attention spans. But, this may have been anecdotal… we don't have a big enough sample size etc, to gauge statistical significance. We've also
found that some children are “set-off” by particular foods or spices. If
you do your journal properly, you will find your child’s pattern – if
there is one!
We have found that identifying each child’s interests is an important
first step. It’s much easier to work on the attention span using the
child’s own interests as a springboard.
Boredom is one of the biggest
enemies, so trying a ‘standard formula’ rarely works across the board.
Keep plugging away!
Both you and your child should realize that
having ADHD does not make one less valuable as a person. The real point
is that each and every child should have the best possible shot at
realizing their own unique potential - and that’s the Challenge!
P.S. There’s lots of half-baked stuff out there. Use your common
sense, research thoroughly, discuss issues threadbare before jumping on
to the latest bandwagon. A little thoughtful hesitation never hurts!
There are many, many things that can disturb a child’s ability to
learn.
Today, I want to highlight reading difficulties or dyslexia as a common and troubling disorder.
Signs of dyslexia can be detected from about 3 years of age onwards as children
fall behind their peers in reading. Commonly, one will encounter any or
all of the following:
May have poor reading ability or poor comprehension
May have more than the normal difficulty with spellings
May often misread information
May have problems with syntax or grammar
May confuse similar letters or numbers, reverse them, or confuse their order
May have difficulty reading addresses, small print and/or columns
Actually we all start out dyslexic; not one of us learned to read without some difficulty. It is therefore a question of degree! The amount of disability and its causes will have to be determined by
experts for each child. Each affected child is an individual, and each child's dyslexia will be unique.
Your Child is NOT!
There is some evidence that dyslexia might also be found with other developmental disorders including ADHD, dysgraphia, and dyspraxia, but not always, so do allow the experts to test your child throughly before making a diagnosis.
Various standardized tests are available to
help with the diagnosis. Depending on the cause, and the severity, many a child's
disability can be lessened or even sometimes apparently eliminated. Early detection
and treatment are keys to success but our experience is that it is better late than never! Do ensure that you also check your child's hearing and vision, as sometimes these can lead to symptoms similar to dyslexia.
Do not get disheartened! Dyslexia is surprisingly common, and every child certainly can improve with therapy. Try to find out as much as you can about your child's dyslexia and how to help your child compensate for it. Dyslexia has no connection with intelligence or ability! Your goal as parents is to help your child to achieve her or his true potential.
Almost every town now has professional help available for affected
children. Once dyslexia is diagnosed, we strongly advise parents to find and get actively involved with support groups with other parents and children. The emotional support and the tips and tricks you share there can make a huge difference to both parents and kids. To ignore a child’s difficulties, or to take them lightly, making fun of the disability, will simply consign your child to a
life far below his or her true potential.
Keep watch, I plan on doing short highlights on each of the following – Dysgraphia, Dyscalculia, Dyspraxia, ADHD, Autism and Aspergers... time permitting!
The United States president, Barack Obama, (POTUS) initially promised not to allow NDAA's indefinite detention sections to go into law, then suddenly surreptitiously signed it into law at a moment of great distraction (New Year's Eve 2011). Amber Lyons is a very well known reporter and now also a human rights activist. She lost a job by standing up for honest coverage of Bahrain's war on terror.
There's no doubt that the NDAA violates the constitution, and there's no doubt that it's provisions violate the bill of human rights, and no doubt at all that the press is being threatened and muzzled. But I'll let this short video speak for itself...
Needless to say both CNN & POTUS are/were miffed!
There are suspicions that the Justice Dept's haste indicates that NDAA's sections 1021 & 1022 are already in action... Comment is free!
Our kids John Rommel, and Saranya Carr were at their friend Fara's house one night recently when someone outside started screaming "snake!" On rushing out the kids found a group of terrified people including Fara's mom having hysterics over a snake. The discussion was already on as to how they could best set it on fire and who was going to whack it!
After calming them down a bit, with the help of a backpack, the offender was coaxed into hiding in the bag by Vasanth, Saran, Rommel, and Manuraj, the bag zipped up, and our friend, as yet unidentified, was brought home.
We took a look under good light and it turned out to be a 2 foot wolf snake.
The Indian wolf snake (Lycodon aulicus) is a very pretty and nonvenomous snake that's actually fairly
common even in towns and cities. Human towns tend to have high
populations of mice and rats, and are therefore attractive to snakes
such as the wolf and trinket snake.
We did try to get the forest department to come and pick the wolf up, as that's the proper procedure, but they declined, so Rommel and his friend Dinu took our pretty wolf out to a nearby mountain range where there's a good stretch of reserve forest and one very happy snake was released to the wild.
If you aren't too sure about identifying snakes and deciding whether they might be venomous, check out our earlier post to help you identify India's venomous Big 4 and to give you a few tips on dealing with snake bite - just in case!
Cream's farewell concert, Royal Albert Hall (London) 1968. A legendary group, they started hard rock & heavy metal, and then broke up...
A little over 60 minutes, and requiring eardrums of pure steel - Enjoy!
Jack Bruce, Eric Clapton, & Ginger Baker
Here's a bonus Vimeo on Clapton's early technique
And an extra special bonus, after 37 years, Cream came back for a reunion series again at RAH! Here's Badge from May 3, 2005...
After the Cream breakup, Eric Clapton and some friends formed Derek and the Dominos. Here's a fantastic live track from Live at the Filmore: Let It Rain
Enjoy the birth of Hard Rock... Turn that volume UP!
The sad demise of Jack Bruce on Oct 25, 2014, a rock legend - http://en.wikipedia.org/wiki/Jack_Bruce
This tiny 18-inch-long Trinket snake (Coelognathus helena helena) was spotted three doors down from our place one evening. The team (Saranya, John Rommel and myself) were called into action by another neighbor, as the family that saw the snake promptly locked themselves in for safety! We grabbed our snake stick and a pillow cover and found the offender trying to climb the steps to the terrace. With a little gentle manipulation we got him on to the stick and then into the pillow cover.
Notice the threat display, s/he has a vertically flattened neck to appear truly dangerous, but though they do bite quite easily, these beauties are completely harmless, nonvenomous, and they will get used to handling after a short while. When really worked up, they will flatten the entire front third and fold up like an accordion. Now that, with a snake that can get to be 4 feet long can look truly terrifying!
The forest department declined to come over (that's the proper procedure) so we dropped our visitor off at the back end of a burial ground not too far away that's on the edge of a forested area with lots of thornbush scrub around. The happy snake swiftly slipped away to explore.
Shot way back in 1989 at the Buddy Rich Memorial Concerts, these three incredible drummers got together for 9 unbelievable minutes, and time stood still - it still does!
Steve Gadd
Dave Weckl
Vinnie Colaiuta
There was a moment when I was carried back to a village in Zambia near Mapanza. Invited to a wedding, a little boy stands amazed, the drums, the drums...
Mendelsohn's Violin Concerto in E minor, opus 64, the 1st movement Allegro molto appassionato.
A bravura performance of the 1st movement by Julia Fischer
Enjoy 14 mins of blissful sound!
The other two movements of this piece are also on youtube : 2nd movement http://www.youtube.com/watch?v=lOd26lbPc8o 3rd movement http://www.youtube.com/watch?v=NswEr23Xuqo
and here's a pic of the violinist with her Guadagnini violin (1742)
LETTER TO HIS YOUNGEST SON ON HIS DEPARTURE FOR AUSTRALIA IN 1868.[27]
My dearest Plorn,
I write this note to-day because your going away is much upon my mind, and because I want you to have a few parting words from me to think of now and then at quiet times. I need not tell you that I love you dearly, and am very, very sorry in my heart to part with you. But this life is half made up of partings, and these pains must be borne. It is my comfort and my sincere conviction that you are going to try the life for which you are best fitted. I think its freedom and wildness more suited to you than any experiment in a study or office would ever have been; and without that training, you could have followed no other suitable occupation.
What you have already wanted until now has been a set, steady, constant purpose. I therefore exhort you to persevere in a thorough determination to do whatever you have to do as well as you can do it. I was not so old as you are now when I first had to win my food, and do this out of this determination, and I have never slackened in it since.
Never take a mean advantage of anyone in any transaction, and never be hard upon people who are in your power. Try to do to others, as you would have them do to you, and do not be discouraged if they fail sometimes. It is much better for you that they should fail in obeying the greatest rule laid down by our Saviour, than that you should.
I put a New Testament among your books, for the very same reasons, and with the very same hopes that made me write an easy account of it for you, when you were a little child; because it is the best book that ever was or will be known in the world, and because it teaches you the best lessons by which any human creature who tries to be truthful and faithful to duty can possibly be guided. As your brothers have gone away, one by one, I have written to each such words as I am now writing to you, and have entreated them all to guide themselves by this book, putting aside the interpretations and inventions of men.
You will remember that you have never at home been wearied about religious observances or mere formalities. I have always been anxious not to weary my children with such things before they are old enough to form opinions respecting them. You will therefore understand the better that I now most solemnly impress upon you the truth and beauty of the Christian religion, as it came from Christ Himself, and the impossibility of your going far wrong if you humbly but heartily respect it.
Only one thing more on this head. The more we are in earnest as to feeling it, the less we are disposed to hold forth about it. Never abandon the wholesome practice of saying your own private prayers, night and morning. I have never abandoned it myself, and I know the comfort of it.
I hope you will always be able to say in after life, that you had a kind father. You cannot show your affection for him so well, or make him so happy, as by doing your duty.
Your affectionate Father.
Thanks to Brain Pickings (Maria Popova) http://buff.ly/WTfrJo
Rescuing snakes (from dangerous humans) is something that one does whenever the opportunity presents itself. One morning, I got a call saying there was a malaipambu (python) trapped in an agricultural well not far from where we live. The call came while I was out shopping, so I rushed home, handed over the groceries, picked up my snake stick and prepared to head out to the coconut grove where the well was. My son John Rommel and his friend Dinu both tagged along, and that was our team.
Along the way, my autodriver spread the word (as had the farmer), so when we got there, there were about 30 onlookers. I had my doubts about this operation because it was a well, and our Indian wells are rather rough things with typically precarious means of access. This well proved to be no exception, about 60 feet across and sporting a rugged and steep descent cut into two adjacent walls, with the water about 50 feet down.
Anyhow, we slowly worked our way down and soon saw that the supposed malaipambu was actually a large 6 foot (venomous) Russel's viper. The farmer had wanted to clean the well (it was a mess) and that's when the snake was spotted and misidentified, but luckily none of his workers were willing to face even a smallish nonpoisonous python, so we had been called in.
Now, ordinarily the Russel's is a dangerous snake to tackle and big ones even more so. They have powerful thick bodies, and can launch a strike to about 3/4 of their lengths and generally strike upwards, so people often get bitten at or above knee height. The Russel's is also known to strike with little or no provocation, in common with the saw scaled viper (and most unlike the other two of the 'big 4' the krait and the cobra). Now, while there is excellent antivenin available to deal with the bites of India's big 4 (see my post on this), A Russel's bite also causes extensive local tissue damage and awful ulceration, so surviving the bite is only one part of one's recovery!
We were very handicapped by the tight constraints of the 'steps' and by the fact that we could only just barely reach the water about 4 feet down from the final step. To our advantage was the fact that the snake was in water, cooled down, and therefore a bit more lethargic than otherwise.
S/He was swimming around the edges of the well trying to find some way out. Soon after we got down, s/he came round and I tried to get him on my stick
but this proved impossible. There was a heavy rope lying at our feet,
so my next attempt was with a loop of this rope let into the water.
I managed to get him about half way along his body with the loose noose, but when he was just below us he slipped back down.
After a few minutes he came back round and this time, using my snake stick, I guided him into the noose and then supported his back end with the stick. Rommel was ready with a heavy sack and into this we gently let him down. The top of the sack was tied and we triumphantly ascended with our beautiful Russel's viper.
We got home with our in-sack snake, only to find everyone in a bit of an uproar. We had guests at home (the Bonneys, all the way from Australia) Aruna's aunt and uncle, and they were all in a bit of shock, so the snake was photographed 'in-sack' and then left safely out of sight as we tried to contact the forest department to arrange for them to pick up our prize. That night the forest department staff came and picked him/her up and that was a successful rescue!
If you are terminally ill with one of the numerous diseases for which modern medicine seems to have no answers, or if you are involved in trying to find alternative treatments for someone in this position, then you will want to explore every possible treatment option - but can you, and can you do so ethically/legally?
The issues that arise are big and very important. A recent discussion at LinkedIn's Cell Therapy Industry Group examines some of these issues, and it got me thinking. The Nobel laureate Dr. Ralph Steinman blazed a lonely new trail, and one that is worth examining. There's an excellent writeup in the New York Times ("Is the Cure for Cancer Inside You?") on how Dr. Steinman courageously used his own pancreatic cancer to further explore his treatment options. I'd highly recommend that you read that article before delving into the issues raised on LinkedIn.
As it stands, a terminally ill patient will have a very difficult time emulating Dr. Steinman's example. The regulations in most countries, and especially in the US, simply forbid an extremely individual approach to treatment. There are the standard, tested courses of treatment available to all, but stepping outside of approved treatment protocols & regimens is mostly prosecutable, could well result in a physician losing her license, and probably stiff monetary consequences.
But that leaves the terminally ill patient in a very unenviable position, for it is also acknowledged that following these "standard, approved", treatment options will result in fairly certain and fairly quick mortality. In other words, it's because the treatments are failures that patients are thought of as 'terminal'. Technically, it is possible for a patient in consultation with his physician to try to get approval for an experimental treatment, but that is a lengthy and laborious process (perhaps by design), and when time is of the essence...
What many patients opt for instead, is to enroll themselves in one of the many clinical trials revolving around their particular illness. Again, not a terribly exciting option, for there's a very big chance that you will end up as a 'control' and receive a placebo perhaps with the nonfunctional standard treatment. Even if the particular experimental treatment works for some of the patients in the trial, that might not be you. Even if it worked well in the trial, there's then no telling how long it will take for it to come through the regulatory processes and become an available option for you. One is left with the dubiously satisfying notion that by participating, one has perhaps pushed the cause of science a little further, and very likely at the cost of one's own life!
When we think of what Dr. Steinman achieved, he can be seen to have blazed a trail through the impenetrable jungle of federal regulation. His drive, focus, and stubbornness speak volumes and he achieved the near impossible. We are amazed, for even though he was in a unique position, able to direct his own well-funded research, and to request, and get, an incredible degree of cooperation from eminent specialist researchers from all over the world, he not only got away with it, he indeed seems to have succeeded in prolonging his own life well beyond the norm for the kind of disease that he was suffering from. His example is both inspiring and inspires despair in those who have not his level of influence and are not researchers in their own right.
And this brings up the question of ways and means. In short, at present there are none. The regulations are stultifying. Some of the very rich may be able force their way to their own experimental treatment (one thinks of a Steve Jobs), but for all the rest there are neither the funds, nor acceptable methodologies. Funds would probably be available if there was a clear path to commercialization, but when we are talking about individualizing therapy for the many millions who may be considered 'terminal' it is precisely the lack of any business model that is a big problem. One could go further, for if our cures are primarily found within ourselves, the days of 'big pharma' are probably numbered anyway.
Ideally of course, wherever business fears to tread should precisely be where the government steps in. Unfortunately, the whole picture of drug/treatment approvals has been hopelessly skewed to cater to the major business interests, and the entire regulatory mechanism simply sidesteps the needs of the hopelessly uncommercial 'terminally ill.' The poor patient, and that could be you or I too, just down the road - are left to the tender mercies of the licensed to kill 'standard, approved' treatment options!
The regulators are not just being stubborn. From the standpoint of regulating authorities like the FDA, one problem is accountability, as they are ultimately responsible for each life lost in a medical setting. A failed, poorly tested, poorly understood experimental treatment attempt, even when wholeheartedly entered into by a patient-physician combo, does not let them off the hook. It's also easy to see that the terminally ill patient population is particularly susceptible to quackery. Any hint of hope offered, can become irresistible, and can very easily be a conduit for parting the desperate patient from whatever funds they may have or be able to raise. Folks do need protection against such quacks.
What really is a federal regulatory authority's main purpose? An FDA is first and foremost tasked with safeguarding the health of an entire population of many millions - and that is what they are structured to do. They are simply not in a position to handle individual requests for individual therapies. The very nature of the highly individual immunology-physiology of most intractable diseases, the genetic variations that affect outcomes, and the immense number of potential treatments that could be opted for, means that blunt regulatory tools that work well for protecting large populations are completely (woefully) inadequate at an individual level.
I think it's possible to closely regulate the workup and counseling of patients with terminal illnesses, and still allow the patient and their physician to be the deciders on how to best proceed and with which particular treatment, however experimental. After ensuring a complete History and Physical is taken, and all previous medical records are on file, the data to be gathered and generated during the treatment can be rigorously specified so that each patient's progress can be carefully monitored while a meaningful database is developed which can be openly accessed and studied by researchers.
What it should boil down to, is that apart from setting some overall boundaries and demanding rigorous clinical records to be maintained, the regulatory authorities can safely stay out of fiddling with an approval process for each individual case. Certainly counseling can be required, both in the beginning and at regular intervals during the process of treatment.
Where does big pharma fit itself into this picture? Well, here is a troubling problem. For one thing, the present process by which drugs gain approval is heavily tilted towards a big pharma R&D to clinical trials scenario. Eventually, a drug that has gone through this process will be released for use by a huge medical community, and big pharma gets to recoup their costs and then make a healthy profit.
In spite of this, big pharma could well participate at an individual level and even help with providing funding and/or material support in the form of therapies under development. Unfortunately, and understandably too, most companies are leery of allowing their drugs under development to be used in situations that might just earn the drug a bad name while it is still in the midst of an involved and costly approval process. Any false step may well kill off a promising drug candidate early. Some creative thought on a thorny issue is warranted. The facilities available to big pharma for developing individualized therapies are unparalleled, but without a payoff, these will remain unutilized.
The combination of millions of cancer subtypes, evolving cancers, and the individuals' own incredible variability, is mind boggling. The same is true of other common terminal illnesses like multiple sclerosis. So many irreversibly progressive illnesses have strongly individual characters and require individually tuned therapies. One person's illness, even when apparently classified and staged in common with other 'similar' patients, can still have a stubbornly unique progression. It's only natural then that the treatment too has to be individually designed.
Clinical trials, as now commonly set up, are geared to large numbers where individual responses are unimportant. Results instead have to attain statistical significance when compared with the placebo groups (effectively the untreated 'control') in order to count for anything. Of course, with the advent of big data, as well as the deeper analysis of results, we are increasingly seeing subgroups and subtypes identified, and there is now more appreciation of individual responses. When a system is designed to test overall statistical trends, it's not surprising to note that it has resulted in a regulatory framework that's almost impossible to adapt to an individual's needs. The system has fed off itself and spiraled into an inflexible megalith. The system is also what 'big pharma' is happy with and is very happy to maintain the status quo.
I have only touched on some of the very many issues surrounding this discussion. It should be obvious that new ways of funding individual therapies need to be worked out. Only a tiny proportion of people will be able to work on their own disease as effectively as Dr. Steinman could. He had at his disposal a large, well funded research establishment, and there will be none who are similarly blessed. Again, I think creative solutions may occur to those both in and outside of 'big pharma' who may see an opportunity to bridge their own transitions through the upcoming changes in how medicine is to be done. It follows that it will behoove the insurance sector to follow suit!
Dr. Steinman has shown us the tremendous potential of allowing the terminally ill patient to explore individually tailored therapy. If we properly organize and carefully gather the data that results and then study it properly, it will eventually prove a broad and useful base for increasingly meaningful 'terminal' decision making. What looks from a scientific standpoint to be hugely messy, may eventually prove to be the path to a new way of doing medicine, not only for the terminally ill, but for every patient, and indeed for every single individual.
In one (critically important) sense we are all terminal, we just don't generally choose to face our own mortality in such stark terms.
You may also want to look at theseupdates: 1. Autologous cell therapies: challenges in US FDA regulation: https://www.box.com/s/waxwfciz1eqxsbinvmxu?goback=.gde_135553_member_195931915 Discusses why autologous cell based therapies (i.e. stem cells from our own bodies) are yet to make the kind of impact expected of them. Again the FDA is the main culprit. Read it for yourself...
Stem Cell Showdown: Celltex vs. the FDA http://www.businessweek.com/articles/2013-01-03/stem-cell-showdown-celltex-vs-dot-the-fda
The Truly Staggering Cost Of Inventing New Drugs: http://www.forbes.com/sites/matthewherper/2012/02/10/the-truly-staggering-cost-of-inventing-new-drugs/?goback=.gde_3363923_member_199828696
Regenerative Medicine: Engineering Its Continued Success:Geoff Mackay, http://genengnews.com/bioperspectives/regenerative-medicine-engineering-its-continued-success/4653
Cell-Based Therapies for Malignant Brain Tumorsby Nousha Khosh on Tue, Jan 15, 2013http://info.sanguinebio.com/neurology/bid/202701/?utm_campaign=Researcher-Facing&utm_source=linkedin&utm_medium=social&utm_content=00e7420a-411f-4b74-b7b0-3eccc98279a3
FDA Challenges Stem Cell Companies As Patients Run Out Of Time NPRhttp://www.npr.org/2013/02/02/170942324/fda-challenges-stem-cell-companies-as-patients-run-out-of-time
2. Stem Cells and the Lawsuit That May Shape Our Medical Future - ForbesFDA gone wild! A very informative Forbes Article: http://buff.ly/14605kUupdate on Feb 28, 2013
See the Patients for Stem Cells site and their research into the safety of stem cells for treatment :Patients for Stem Cellshttp://www.patientsforstemcells.org/ update March 13, 2013
If you are a LinkedIn member, check out this fascinating discussionthat nails all the facts to date: http://linkd.in/15MkmPf
Now, an article in EMBO warns of dire consequences if the usual route of clinical trials etc. is bypassed in Italy and they draw the very odd analogy of BMT (bone marrow transplant)! The EMBO article is available in full and EMBO also did a short summary of it. Now, this is timed to affect the debate in the Italian parliament that threatens to legalize the use of autologous stem cell therapies and leaves the decisions in the hands of the patients and their physicians when the disease that they are attempting to treat is terminal. I'll keep the readers posted on where that ends up!
4. The Other Side of the Stem Cell Coin! Over regulation etc.
The famous journal Nature and the US FDA have been arguing that unauthorized stem celltreatments are potentially very dangerous, that the science is not simple, in fact is very complicated, and therefore is fraught with risks of everything from tumors to immunological complications. I refer you to what is generally available after googling the issue:
There are two major problems with the FDA's approach. First, if a patient asks what stem cell based "approved treatment" options exists, the answer now is essentially nada NONE. Second, it is very unclear indeed as to what the process is like to become an approved stem cell treatment center. Beyond these basic flaws (which are rather fatal to the FDA's claims), it also looks like the FDA is itself trying to do the basic research on stem cells, bypassing the whole of the established research community, and this means that whatever they are going to DO eventually will take an unforgivably long time. I am not an expert on any of these matters. I do hope (as a blood banker), that the incredible infrastructure that exists in blood/tissue banks can be put to even greater use by including stem cell processing/storage as a routine. All that would require is for the cGMP and acceptable protocols to be published by the FDA. However, that hope is very faint at this point! Technically, all the 'issues' like needing safe, sterile closed systems, can be easily overcome!
Here's an article in the Monday, October 3, 2011WSJ by Dr. Scott Gottlieb a former Deputy Commissioner of the USFDA : How the FDA Could Cost You Your Lifethat well illustrates some of the startling problems faced from over regulation by the USFDA.
And now this - a 10-year old girl who desperately needs an adult lung transplant is ruled inadmissible 'too young' by the US FDA Watch it here - http://video.foxnews.com/v/2431370334001/parents-race-to-save-sarahs-life and it took a judge's order to get her the transplant. The parents pleas to the FDA fell on deaf ears
5. On the commercial problems faced by autologous stem cell therapies, here's a decent writeup-analysis of the difficulties faced by one of the SCSI's members Aastrom http://bit.ly/Zy3SYk
6.The fight for the genome. If human genes can be patented, a huge revolution in medicine will die a quick death. The fight is on now. Here's a brief rundown by PBS Nova: Are Gene Patents Standing in the Way of Personalized Medicine?
7. Find out more about a model for making stem cell therapies clinically realistic :"For the past four years I have been following the work of the ‘Blood Pharma Project’,
which is seeking to culture red blood cells in the laboratory from
pluripotent stem cells, with the eventual aim of creating a clean and
unlimited source of red blood cells for transfusion." Emma King - http://www.eurostemcell.org/commentanalysis/making-red-blood-cells-model-stem-cell-therapy-development
Please do let me know of any advances/changes as they occur by posting comments below, so that we can together try to keep the information current and useful.