Posts Tagged ‘Oxygen treatments’

Stem Cell Therapy for Autism – Final Word

Friday, May 4th, 2012

This has been a pretty exhaustive series of posts exploring and explaining the most recent developments in stem cell therapy as they pertain to ASD. These blogs are meant for parents who are considering the procedure (wiki isn’t helping entirely, right?), but many readers may choose this conclusion as their only ‘read’, which is fine. However, the extensive material in the preceding articles can assist parents who want to be better informed.

My goal was to review the current state-of-the-art regarding Stem Cell Therapy, in as neutral a manner as possible. The medical community is fairly dogmatic against high cost, potentially high risk procedures which have little scientific confirmation, and practitioners of such therapies are often labeled as charlatans who prey upon desperate families. My personal bias is, likewise, to be very suspicious of such miracle cures. However, as I have written previously, traditional medicine has so f*#%ed up the diagnosis, etiology and treatment of the condition we call autism that it is no wonder that parents seek assistance elsewhere.

The ‘pros’ of Stem Cell Centers can be found at websites such as this. The cons are exposed in detail at quackwatch. And, don’t forget the schlep to India. So far, this is my  dollars-worth of advice, “What would you do if it were your child, Dr. Udell?” – from a practicing pediatrician’s point of view:

One of the most troubling contentions that I have encountered when interviewing Stem Cell proponents is, “There are practically no risks to the patient because the type of cells that are now used (whatever type that they are using) are safe.” First, nothing that a doctor does is perfectly safe. I even have to counsel parents about the potential die-off from probiotic treatment that can result in regressive behaviors, lack of sleep, rashes, bowel problems and such. Second, there are other increased-risk modalities that often accompany stem cell treatment including; lumbar puncture, intravenous line placement, steroid usage, antibiotics or anesthesia. Third, “Studies have shown safety…” Since when did the Autism community believe that statement? And what about long-term complications? No one can answer that honestly, because no one knows.

This story is a clear example of the issue. In the past month, several children in my medical practice have suffered some especially disruptive behaviors. One particular beautiful child just got her caretaker (of 2 years) to quit because she broke the poor lady’s arm. Her mom said, “You know, I spoke to a woman who has lots of bucks, who had a child – although it was different sex, different age, different diagnosis – who said that there was an improvement with the therapy. Even if I got a small improvement in ‘Suzie’s’ (self-injurious) behavior, I would be glad to spend the $20K.” Now, I had to speak to this mother for 20 minutes to convince her to give a short course of steroids, and it was a struggle. What is the attraction?

Parents can be driven to the point of trying, literally, anything to create a break in the action, even if only is only temporary. Very few people experience or can even comprehend the complicated feelings of parents with severely affected children. That’s why this mom wasn’t considering transplant risks. “Just give me a light in the middle of the tunnel,” is a fair plea. What patients don’t hear about is when a treatment has failed or turned out to be a waste of time and money – there are no blogs about that. There is even one patient in our practice who developed ASD after a stem cell transplant (required for a different medical condition),

What should be happening? There should be more research centers, if not performing the procedure, at least collecting reliable data from the patients who have undergone the treatment. The patients need to be assessed in some formal way about their level of ASD involvement and improvement(s), if any. Those parents so set on going forward with the procedure should be enrolled in a proper setting with all the accepted standards. For those professionals performing the protocol, it’s the only way that they are going to be believed, anyway.

You can’t ‘buy’ your way out of ASD. I takes lots of love, time, work, perseverance and luck and involves a combination of treatments, especially targeting the social domain. Some improvements may take time to evolve into useful behaviors. Steps forward by an autistic patient tend to be incremental and require reinforcement and practice so that neuro-typical behaviors can become embedded into the personality.

No, I can’t recommend the procedure at this time. I can, however, understand how parents arrive at the decision to move forward with the treatment, but not without exhausting all other reasonable and better documented therapies. If you have the time and money and your child continues to be severely affected, at least be well informed and maintain reasonable expectations.

Addendum:

 January, 2014

I recently interviewed a parent who related the following story: “I was so thrilled after the treatment. The child was more calm than ever. I really had hope, for the first time in years.” 
“Would you do it again,” I asked?
“Well, no,” Mom said. “After about a month or so, all those gains in behavior were lost. That was too much money for such a short period of improvement.”

July 2014
Duke University Trial:
http://sfari.org/news-and-opinion/news/2014/experts-balk-at-large-trial-of-stem-cells-for-autism

“There’s no question Kurtzberg is the right person to do this,” says Emanuel DiCicco-Bloom, professor of neuroscience, cell biology and pediatrics at the Rutgers Robert Wood Johnson Medical School in New Jersey. Still, he says, “I think it’s early times.

Hyperbaric Oxygen Treatment Part III

Saturday, January 22nd, 2011

hbot3How it works: Until more is known about the cause(s) of autism, the holy grail of treatment is to create new neural connections to overcome the apparent lack of typically functioning network linkages in both sensory and motor pathways. Various areas of the brain have been identified as “suspect” for inflammation, size/volume differences (including increases due to swelling and decreases due to poor growth), blood flow and toxic deposition. One way or another, oxygen under pressure does increase the amount of oxygen which is dissolved into your blood (not only the O2 that is always attached to a hemoglobin molecule in a person’s red blood cells). This is the extra oxygen that is supposed to nourish sick areas of the brain to improve blood flow, oxygenation of tissue and theoretically to promote new growth.

How else it works: There are additional improvements that patients experience when exposed to HBOT. First, the gut can become healthier, especially in children who (1) have not had intensive G-I evaluations and treatment, (2) there has been resistance to the usual probiotic and anti-fungal treatments, or  (3) the patient suffers from frequent recurrence of fungal infestations or other intestinal problems. Yeast and nasty bacteria generally do not like living in the atmosphere created by the hyperbaric environment. Additionally, there is often a lack of sensory integration and other behaviors related to seeking proprioceptive input that affect most autistic patients. Temple Grandin discovered that a simple ‘squeeze machine’ made her feel less anxiety. Behavior analysts (and parents and professionals) have known for years that weighted vests, small spaces and deep hugs help calm affected children. Pressure such as the kind that is felt in a hyperbaric chamber must feel very satisfying to many patients.

Most recent clinical research (Entries will be updated from time to time and when needed):

Hyperbaric treatment for children with autism: a multicenter, randomized, double-blind, controlled trial

Improvement was seen… in the treatment group compared to controls in overall functioning, receptive language, social interaction, and eye contact; 30% in the treatment group were rated as “very much improved” or “much improved” compared to 8% of controls; 80% in the treatment group improved compared to 38% of controls. …significant improvements were observed in the treatment group in total score, irritability, stereotypy, hyperactivity, and speech, but not in the control group. In the treatment group compared to the control group… a greater number of children improved in irritability… sensory/cognitive awareness significantly improved in the treatment group compared to the control group… children over age 5 and children with lower initial autism severity had the most robust improvements. Hyperbaric treatment was safe and well-tolerated.

Randomized trial of hyperbaric oxygen therapy for children with autism

No differences were detected between HBOT and placebo groups across any of the outcome measures. The present study demonstrates that HBOT delivered at 24% oxygen at 1.3 atmospheric pressure does not result in a clinically significant improvement of the symptoms of Autistic Disorder.

Two research protocols utilizing mild HBOT. There were various differences in study design and implementation, to be sure, but one with positive results in multiple areas, and the other with improvement – in both control and placebo groups – that is to say, no difference from the HBOT.

“If we knew what we were doing, it wouldn’t be called research, would it?” (A.Einstein)

Up next: more medical stuff

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