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.

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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."

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

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:
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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.

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.

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.

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.

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."

Phosphatidylcholine (PC) : PhosChol

Phosphatidylcholine (PC) is a phospholipid and a major source of choline. I found out about a PC supplement, PhosChol, from a fellow parent who has a son diagnosed with Guanidinoacetate methyltrasferase deficiency. You can read more about John at Mommy Klor. After consulting with a doctor, I started giving the supplement to our son on 05/06/09.

It's been about two weeks, and our son seems to be opening and using his hands more than before we started the choline supplement. One of his therapists comment recently that he's using his hands and keeping them open more than before. It's hard to conclusively say that it's only the choline supplement, but his hand improvements seem to correlate with the introduction of PhosChol.

Doctors at the University of Colorado are seeing if choline taken during pregnancy by mothers can prevent mental illness in children. You can read more about their work at Choline Baby.

Botox : FDA instructs manufacturers to add boxed warning about possible negative effects

Botox has been used by doctors in recent years to help manage muscle spasticity. I've heard many success stories and some warnings about using Botox to treat spasticity. I don't have any personal experience with this use of Botox and our son's physiatrist has never mentioned that he would recommend it for our son. I've included links and quotes below from a few sources, including the FDA. Hopefully this FDA warning will help parents make informed decisions about their children's treatment.

Botox helps kids with CP
"...the drug forces the stronger contracting muscles to relax, a condition that lasts for a few months. During that time, physical therapists can work with the child to develop the weaker muscles that control extension. Although it's not appropriate for all children with CP, the treatment may help some move normally."

The Latest on Botox for Cerebral Palsy
"The FDA, which has never approved botulinim toxin for this use, issued instructions to manufacturers to add a boxed warning on labels about possible negative effects."

"Will these precautions make you less likely to seek this treatment for your child? Or have you had such success with it that you're willing to take the risk?"

Follow-up to the February 8, 2008, Early Communication about an Ongoing Safety Review of Botox and Botox Cosmetic (Botulinum toxin Type A) and Myobloc (Botulinum toxin Type B)
"As the result of an ongoing safety review, FDA has notified the manufacturers of licensed botulinum toxin products of the need to strengthen warnings in product labeling, and add a boxed warning, regarding the risk of adverse events when the effects of the toxin spread beyond the site where it was injected."

"Botulinum toxin products have been approved by FDA for one or more of the following uses: temporary improvement in the appearance of glabellar lines (frown lines between the eyebrows), treatment of strabismus (crossed eyes), blepharospasm (abnormal tics and twitches of the eyelids), cervical dystonia (involuntary sustained or repetitive contraction of the neck muscles), and primary axillary hyperhidrosis (severe underarm sweating). For these uses, botulinum toxin is injected into the skin or into muscle tissue."

"In pediatric postmarketing adverse event case reports, botulinum toxin products were mostly used to treat muscle spasticity in cerebral palsy, a use that has not been approved by the FDA. The reported cases of spread of botulinum toxin effect beyond the site of injection were described as botulism, or involved symptoms including difficulty breathing, difficulty swallowing, muscular weakness, drooping eyelids, constipation, aspiration pneumonia, speech disorder, facial drooping, double vision, or respiratory depression. Serious case reports described hospitalizations involving ventilatory support and reports of death."

"...healthcare professionals who use botulinum toxin products should understand that these adverse events have been reported as early as several hours and as late as several weeks after treatment."

Allergan to Resolve Botox Safety Labels
"Most deaths and serious problems were seen in children treated for cerebral palsy-associated limb spasticity, the FDA said."

Blues for Botox? 'Black box' warning, slumping economy, competitors may impact dominance
"Typically reserved for medications associated with serious or life-threatening risks, the "black box" warning is one of the strongest safety actions the agency takes. The FDA noted that problems with botulinum toxin had occurred mainly in patients receiving overdoses for unapproved therapeutic treatments, such as use in limb spasticity in children with cerebral palsy."

Olive Oil

We've been giving our son organic olive oil since he was around one year old, initially to provide him with some healthy calories since he was mainly eating, and continues to mainly eat organic baby food and some pureed table food. Much of the following information is taken from the book Brain-Building Nutrition.

Olive oil is high in the Omega-9 fatty acid oleic acid and rich in antioxidants and phytonutrients. Organic cold-pressed virgin or extra virgin olive oil is preferred. It has also been shown to elevate HDL "good" cholesterol, which might have an important affect on preserving brain function. In terms of overall health value, olive oil is one of the most important.

Fatty acid content:
Omega-6 = 8 percent
Omega-9 = 82 percent