Monday, April 26, 2010

The Listening Program

Our son has just started week 4 of The Listening Program (TLP). The entire program will take 20 weeks to complete and involves listening to 15 minutes of music using special headphones twice a day, 5 days a week. So far it's a bit of a challenge keeping the headphones on him for each listening session, but a walk in his stroller or some time in his swing usually does the trick.

We noticed that some of his undesired behaviors seemed to increase the first couple of weeks, and are now decreasing as the program progresses. The OT that suggested this program for our son equated it to cleaning out a messy closet - if your brain were a closet :) Hopefully his "closet" is in the process of becoming better organized.

Monday, February 1, 2010

Stem Cells and Brain Injury

There have been a couple studies regarding stem cells and brain injury that I've recently come across and found interesting.

The first study I'd like to point out to is an animal study that transplanted embryonic stem cells into the brains of newborn mice. The study showed that the stem cells not only integrated into specific regions of the brain, but also linked correctly with surrounding neurons. Due to my personal beliefs I do not condone the use of embryonic stem cells, but the research is certainly promising. Read more about the study here.

The second study I'd like to call attention to is a clinical trial using adult stem cells derived from patients own bone marrow. It looks like preliminary results of the study should be published in a few months and we'll know more at that time. Intrathecal Stem Cells in Brain Injury (ISC)

Finally, Dr. Joanne Kurtzberg at Duke University is using children's own umbilical cord blood to treat cerebral palsy, among other things. Read more about this therapy from Ellen, a parent who's son received this therapy.

Monday, January 4, 2010

Hyperbaric Oxygenation for Hypoxic Ischemic Encephalopathy

I recently read a blog entry titled "Why we don’t use hyperbaric oxygen for cerebral palsy but the Chinese do" and it got me thinking once again about hyperbarics and how it has helped our son. The post is a short commentary about hyperbarics and governments' willingness (or unwillingness) to utilize the therapy to treat brain injury.

The blog post references an article, the summary of which is below.

“Treatment with hyperbaric oxygen possibly reduces mortality and neurological sequelae in term neonates with hypoxic-ischemic encephalopathy. Because of the poor quality of reporting in all trials and the possibility of publication bias, an adequately powered, high quality randomised controlled trial is needed to investigate these findings. The Chinese medical literature may be a rich source of evidence to inform clinical practice and other systematic reviews.”
-Clinical effectiveness of treatment with hyperbaric oxygen for neonatal hypoxic-ischaemic encephalopathy: systematic review of Chinese literature (published 11 May 2006)

After doing much research (some of which I've written about on this blog) we decided to provide our son with 40 hours of hyperbaric oxygen therapy (HBOT) when he was 12 months old. Because he responded so well to his first round of HBOT, including decreased spasticity and increased vision, we went back for 40 more sessions 6 months later, this time coupled with intensive pediatric therapy. We witnessed continued improvements. Our son is now over 2 years old and we recently made the decision to purchase a soft chamber to provide him with hyperbaric air therapy (HBT or HBAT) at home.

We made this decision in part because the studies I am aware of have shown improvements in patients treated with pressurized room air (HBT or HBAT) as well as patients breathing oxygen in a hyperbaric environment (HBOT). Due to the increased atmospheric pressure, both groups benefit from increased oxygen absorption.

"The results of the only truly randomized trial were difficult to interpret because of the use of pressurized room air in the control group. As both groups improved, the benefit of pressurized air and of HBOT at 1.3 to 1.5 atm should both be examined in future studies."
-Hyperbaric Oxygen Therapy for Brain Injury, Cerebral Palsy, and Stroke

Monday, December 7, 2009

Therapeutic Listening

Two separate occupational therapists have told us about Therapeutic Listening and how is might help our son, so we thought we'd look into it. Our son tends to get upset when he hears sudden loud noises like a hair dryer, coffee grinder, vacuum cleaner, etc. What's interesting is that if we tell him about what we're doing or let him touch the item before it makes noise, he's much calmer. At any rate, we're considering finding a Therapeutic Listening trained therapist to work with our son.

==============
The following information is copied directly from "A brief introduction to Therapeutic Listening":

"Therapeutic Listening coupled with Sensory Integration (SI) tends to speed the emergence of:
- Attention
- Organized behavior
- Self regulation
- Postural control
- Bilateral coordination
- Praxis
- Fine motor control
- Oral motor/articulation
- Social skills
- Communication
- Visual motor integration

What is Therapeutic Listening?

Therapeutic Listening (TL) is an expansion of Sensory Integration. It is an auditory intervention that uses the organized sound patterns inherent in music to impact all levels of the nervous system. Auditory information from Therapeutic Listening CDs provides direct input to both the vestibularand the auditory portions of the vestibular-cochlear continuum. The emphasis of TL is onblending sound intervention strategies with vestibulo-proprioceptive, core development, and breath activities so as to sustain grounding and centering of the body and mind in space and time. Providing these postural, movement, and respiratory activities as part of the TL program is critical. Therapeutic Listening utilizes numerous CDs that vary in musical style, types of filtering, and level of complexity. The music on Therapeutic Listening CDs is electronically altered to elicit the orienting response which sets up the body for sustained attention and active listening."

Thursday, October 22, 2009

Chiropractic Care

We've recently started to look into chiropractic care for our son. I've read that chiropractors can sometimes help with posture and neurological function. Our son has had one adjustment several months ago, just before his last month of HBOT. It's something that we've not really had time to pursue until now, and seems to make a lot of sense. Check out the links below for some case studies specific to chiropractic care and cerebral palsy.

Improvement in a Child with Cerebral Palsy Undergoing Subluxation Based Chiropractic Care

Cerebral Palsy Helped With Chiropractic Care, Four Case Studies

Wednesday, September 23, 2009

2009 H1N1 swine flu vaccine : Q&A

I was browsing through the CDC website to find out more information about the H1N1 vaccine and thought I'd share some direct quotes from the general Q&A on H1N1 vaccine safety, as well as links to other reputable US government sources of information.

General Questions and Answers on 2009 H1N1 Influenza Vaccine Safety
"Will the 2009 H1N1 influenza vaccines be safe?
We expect the 2009 H1N1 influenza vaccine to have a similar safety profile as seasonal flu vaccines, which have a very good safety track record. Over the years, hundreds of millions of Americans have received seasonal flu vaccines. The most common side effects following flu vaccinations are mild, such as soreness, redness, tenderness or swelling where the shot was given. The Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA) will be closely monitoring for any signs that the vaccine is causing unexpected adverse events and we will work with state and local health officials to investigate any unusual events.

Are there some people who should not receive this vaccine?
People who have a severe (life-threatening) allergy to chicken eggs or to any other substance in the vaccine should not be vaccinated.

Will the benefits of the 2009 H1N1 influenza vaccines outweigh the risks? Is this something I should talk to my healthcare provider about?
Currently the 2009 H1N1 influenza virus (sometimes called “swine flu”) virus seems to be causing serious health outcomes for:
  1. healthy young people from birth through age 24;
  2. pregnant women; and
  3. adults 25 to 64 who have underlying medical conditions.
Seasonal influenza vaccines are highly effective in preventing influenza disease. The expectation is that a vaccine against 2009 H1N1 influenza would probably work in a similar fashion to the seasonal influenza vaccines. CDC and FDA believe that the benefits of vaccination with the 2009 H1N1 influenza vaccine will far outweigh the risks.

What is the best source of information for 2009 H1N1 influenza vaccine safety?
In addition to talking openly with your healthcare providers, CDC also encourages you to stay informed by checking the following Web sites often for the most up-to-date news and information: www.cdc.gov/H1N1flu and http://www.flu.gov/."

Edited to add my personal opinion:
==============================
Whether or not to have your child vaccinated for H1N1 is a very personal decision. That said, we are not planning to vaccinate our son due to his egg allergies and the fact the the vaccine has been fast-tracked. Verbiage like "expectation", "would probably" and "unusual events" from the above direct quotes, coupled with the fact that the substances in the vaccine have not been disclosed yet do play a part in our decision. I feel it's important to individually weigh the pros and cons for your child.

Saturday, September 19, 2009

H1N1 swine flu and kids with cerebral palsy

I've read some posts on other blogs, including Ellen's post at To The Max, about H1N1 swine flu and concerns of how this may affect kids with epilepsy, cerebral palsy, or other neurodevelopmental conditions in the coming months.

The CDC report states that, of the thirty-six (36) pediatric deaths associated with H1N1 in the US in 2009, twenty-four (24) were kids with high-risk medical conditions. Of this high risk group:
"... 92% had neurodevelopmental conditions (e.g., developmental delay or cerebral palsy), a finding consistent with the results from a study of influenza-associated mortality during the 2003--04 influenza season."

I've read a bunch of information on this topic and found an interesting article linking low vitamin D with increased flu death risk in kids. Here's a quick quote from the article:
"All of these neurological conditions are associated with childhood Vitamin D deficiency. Exacerbating the problem further, many of these kids take anticonvulsant drugs, which lower Vitamin D levels."

I've written about Vitamin D before, and this research only solidifies our decision to continue to test and supplement our sons Vitamin D3 levels.

Sunday, September 13, 2009

The Oxygen Paradigm

This is a lecture by Dr. Philip James at the 2001 International Symposium of Hyperbaric Oxygen for the Brain-Injured Child. I think Dr. James gives a good overview of reasons to utilize HBOT for brain injury.












Friday, July 24, 2009

Nutrition

So much of development is tied to proper nutrition.

Our son has food allergies and oral-motor difficulties with solid foods, which makes it difficult to ensure that he's getting all the nutrition he needs. So, we've consulted with a chiropractor nutritionist who suggested a nutrition test called a Pediatric ION (Individual Optimal Nutrition) profile. The test measures essential minerals, vitamins, fatty acids, and amino acids, among other things and recommends supplements based on these test results.

We recently received the test results and will be adjusting his supplements based on his individual needs. I like this because it tells us exactly what his body needs, so we're not supplementing unnecessary items.

Friday, May 29, 2009

Serial Casting

We first heard about serial casting during our son's month of intensive pediatric therapy. His PT told us about children they had worked with who were able to postpone or avoid surgery for muscle tightness using this approach.

Serial Casting - quoted from St. Joseph's Children's Hospital of Tampa

"Serial casting is a noninvasive procedure that helps children and adults improve their range of motion so they can perform daily activities with less difficulty. It is a process in which a well-padded cast is used to immobilize a joint that is lacking full range of motion. The cast will be applied and removed on a weekly basis. Each cast gradually increases the range of motion in the affected joint.

Who benefits from Serial Casting?
Muscle tightness can manifest itself in many ways and for various reasons. Doctors refer patients for serial casting to help improve overall quality of life. Serial casting helps patients who have a variety of disorders including:
  • Cerebral palsy
  • Spina bifida
  • Brain or spinal cord injury
  • Congenital abnormalities
  • Muscular dystrophy
  • Idiopathic toe walking
  • Peripheral neuropathy
Why would a physician refer for Serial Casting?
  • Serial casting is a non-surgical approach aimed at reducing muscle tightness around a joint that is limiting range of motion and functional mobility.
  • Serial casting assists in achieving the optimum alignment of a joint. It also helps prepare a joint for the use of further orthopedic devices such as braces, splints, etc.
  • Serial casting may help decrease the chance of a deformity developing and/or progressing due to abnormal weight-bearing.
  • Serial casting is a safe and effective way to increase range of motion and improve functional mobility. It may help eliminate, delay, or minimize the need for surgical intervention.
What happens during a Serial Casting session?
Muscle strength and range of motion of the affected joint will be assessed prior to application of the cast. A team of specially trained therapists will apply the cast in the joint’s optimal position and range. Instruction about care of the cast and precautions will be reviewed with the family and patient.

How long will I need to come for cast changes?
Casts will be changed on a weekly basis until a target range-of-motion goal is achieved. Predicting the number of casting sessions is difficult, as each individual responds to the casting procedure at different rates. Typically, the casting procedure is completed in 4-6 weeks.

What happens after the casting is finished?
The physician determines what may be needed in terms of orthotics (braces, splints, etc.) to help maintain the newly gained range of motion.

How does Serial Casting affect the patient and family?
A short accommodation time will be required, as the cast has added weight and the joint is now immobile. A walking cast and cast shoe allow children to walk during the period of casting. Daily routines are not altered significantly and patients can stay very active, participating in school and normal activities. The biggest challenge is keeping the cast dry. Sponge bathing is necessary to avoid getting the cast wet."