Kaitlynn's Place

I encourage you to watch this YouTube Video about Tourette Syndrome

An interesting Tourette Syndrome study was published in the July issue of the Journal of Development and Behavioral Pediatrics.

Tourette syndrome is an inherited neuropsychiatric disorder that appears in childhood. It is characterized by multiple physical and vocal tics. It is estimated that as many as 10 per 1,000 people have Tourette syndrome. The exact cause of Tourette syndrome is unknown, but genetic and environmental factors are known to have a role. Sadly, there is no universal medication to control the many variations, degrees, and manifestations of the Tourette tics. The medications that are available are used sparingly and in the lowest dose possible, as the medications’ adverse effects are often more disturbing than the Tourette symptoms.

As one can imagine, children with Tourette syndrome are usually socially awkward, teased, and are viewed as bizarre by their peers.  So, the study titled- "Children and Teens With Tourette Syndrome Find Relief With Self-Hypnosis," is welcoming news for those with Tourette Syndrome.

The study was of 33 children and adolescents with Tourette Syndrome. It found supporting evidence that self-hypnosis reduced their symptoms and improved their quality of life.

Each participant watched a video and was given self-hypnosis training in individual sessions. They were then assigned to practice the technique three times a day and answer questions about their tics and how they felt experiencing them.

Seventy-nine percent of the research participants achieved enough tic control improvement to report that they were personally satisfied with the technique. According to one of the authors of the study, Dr. Lazarus, self-hypnosis helped the patients experience a state of mind that combined relaxation with concentration on a desired focus point as other thoughts and feelings fade into the background.

Read the study here.

I realize that I write a lot about the resources available (or lack there of) for special needs children and their families. However, I have long thought that one of the greatest challenges for the parent(s) of handicapped children is lack of resources, lack of available care and education, and lack of global support. These take a much heavier mental and physical toll on the parent than the child‘s actual disability ever thought of.   

A new study by the Texas A&M University Center on Disability and Development seems to give statistical data to my personal opinion. The study was published in Rehabilitation Psychology.

Seven Texas based focus groups were conducted with 40 parents of children with disabilities. The collected data was coded into themes. The four significant themes that serve as barriers to a positive parent wellbeing were:

1. Access to information and services
2. Financial barriers
3. School and community inclusion
4. Family support

Read more about the details of the study here.

If you are the parent of a special needs child and feel completely overwhelmed by the medical and fiscal issues, have no fear…you are not alone. Most parent’s with special needs children are not millionaires. We are low income and middle class folks that don’t really have spare money sitting around for things like a $30,000 muscle biopsy.

My personal situation was comfortable before Kaitlynn was born. I worked as an ADON for a nursing home and my husband was a maintenance supervisor for a prison. We were not rich by any means, but we were comfortable. We saved around $40,000 before getting pregnant, so that I could take a year off with our future baby. After Kaitlynn was born and her medical issues became apparent, I resigned from my job. It only took 6 months for her medical expenses to devour our savings. We not only now faced monthly bills that we obligated ourselves to when we had two incomes,  but a new steady stream of  medical bills and expenses to travel to all these doctors.

It was a humbling and life changing experience to say the least. I learned a frugal nature that I never would’ve thought existed within me; salvage stores, consignment shops, and discount stores became my new best friend. However, frugality was still not enough to stretch pennies into hundred dollar bills.

I swallowed my pride quickly when it came to the wellbeing of my child and getting her whatever she needed. I spent hours researching anyone and anything that would provide help. So, don’t give up on getting your child the help that they need because you hit a financial brick wall. There are many resources that specifically help families with special needs children. Here are six resources to get you started.


      Angel Flight

This private charter plane will transport ONE parent and handicapped or terminally ill child to doctor appointments, surgeries, etc for FREE. The plane is usually small and the trip is donated by the pilot or owner. There is a waiting list. So, if you need this service, it is best to apply as soon as you know the date you need the transportation.
  
      SSI Supplemental Security Income

 If your child has certain disabling conditions you may be eligible for SSI. This is a program through the Social Security office. It generally takes several months for approval, and you may get denied several times, but just keep applying. You may be eligible immediately (while approval is pending) if your child was born with certain diseases.  There is a specific list of these diseases at the SSI web site. Keep in mind that SSI approval is dependent upon income and assets. The specific allowed amounts of assets and income will differ per state. Generally, your vehicle, life insurance, and primary residence is not considered an asset. However, savings accounts, checking accounts, other property, etc are. When the child is approved for SSI, they are also automatically approved for Medicaid.
  
      CHIPS (Children's Health Insurance Program) and Disabled Child Living at Home Medicaid
     
 If you are not approved for SSI and/or Medicaid, then you may still be eligible for the “Disabled Child Living at Home” portion of Medicaid. This is a Medicaid program that DOES NOT consider income. This program only looks at the medical eligibility. The SCHIPS program does consider income as a factor, but the income cap is much higher than with Medicaid. So, both of these are viable options for middle class families stuck between not meeting income requirements for Medicaid, but not being able to afford private insurance.

      Shriners Hospitals For Children

 Shriners  will provide free care for children with certain medical conditions. These hospitals are run by the Shriners organization. You must be recommended or sponsored by a Shriners member. Contact your local chapter for an appointment with a member. It is not a difficult process. There are 22 different hospital locations. The Shriners will provide free transportation to and from medical appointment that are out of state These Hospitals are limited in the care they provide. Mostly, they specialize in orthopedic conditions, burns, cleft palate, & spinal cord injuries.

      Ronald McDonald House

 If you must travel afar to doctor appointments,  then check to see if there is a Ronald McDonald house in the area. You will have a private room here, but the bathrooms and central areas are shared. They have several locations. Again, this is one of those things you want to contact as soon as you know the date of your stay.
  
      First Steps

This is a program for developmentally delayed children. It is provided through the local health dept. The services that they offer depend greatly on the community you live in. Some offer physical therapy, occupational therapy, speech therapy, and special educational instructors…while others may offer different combinations of the above disciplines. It is a home based service and generally each needed discipline will see your child once a week. You may custom build your services based on what you want and what they have available. This program is for children birth through 3 yrs of age. The therapist will help you identify and find a resource to get any equipment you need for your child. Call your local Health Dept for more information.

Clinical trials are essentially human biomedical or health-related research studies that follow a pre-defined protocol. These trials can be interventional (addresses whether experimental treatments or new ways of using known therapies are safe and effective under controlled environment) and observational studies (address health issues in large groups of people or populations in natural settings.)

By becoming part of a clinical trial, you not only proactively participate in your own health care and gain early access to cutting edge treatment, you also contribute to the treatment and research of the disease you are afflicted with.

I get questions all the time about clinical trials. Many parents of special needs children are overwhelmed when it comes to finding a clinical trial that is disease, age, and location appropriate. I watch the clinical trial scene religiously for an idiopathic/mitochondrial disease clinical trial that fits my daughter. The two websites that I find easiest to use, reliable, and always current are:

CenterWatch


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This site has a little of everything. It is an excellent source to find news, directories, analysis, and listings of clinical research. If you are unfamiliar with clinical trials, the site breaks down the process in an easy to understand manner. You can search clinical trials and find out the who, what, when, where, and how of each trial; search for drug information; review already completed trials; and sign up for e-mail alerts about specific clinical trials. Start your search at CenterWatch.

ClinicalTrials.gov 

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This site includes current information on federally and privately supported clinical trials for a wide range of diseases and conditions. Search by topic, keyword, disease, location, etc.. Studies are updated daily. At the moment, there are 91,384 trials listed on the site. ClinicalTrials.gov was developed by The National Institutes of Health (NIH) and The Food and Drug Administration (FDA…so users can rest assured that the listings are all legit. Start your search at ClinicalTrials.gov. 



If you have any questions, feel free to leave them in the comment section:)