Welcome To Kaitlynn's Place

Kaitlynn was born September 29th, 2004. We have seen neurology specialists from St. Louis to New Orleans since she was born. Unfortunately, we still do not have a definitive diagnosis for Kaitlynn. The best guess her doctors have to offer is mitochondrial disease.

How To Find Clinical Trials

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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:)

New Hope For Children With Cerebral Palsy (CP)

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Those that suffer from neurological disorders such as- multiple sclerosis, cerebral palsy, spinal cord injury and amyotrophc lateral sclerosis (ALS) may benefit from cutting edge cell transplants.

There are unique cells that support and surround the neurons in the nose. They are known as olfactory ensheathing cells or OEC’s. OEC’s have the ability to regenerate and they are relatively easy to obtain. These factors make them prime for transplantations to repair  some lesions in the central nervous system.

The latest OEC research is related to cerebral palsy (CP). CP is a neurological disorder that appears from infancy to early childhood. CP is essentially a class of brain lesion caused by abnormal development, injury, etc.. It has permanent effects on muscle movement of the child.

The issue 19(2) Cell Transplantation publication contains research from transplanted OEC clinical trials done in China.  33 children and adolescents  with CP were involved in the study. According to the research, 83% of the children had abnormal radiological findings. White matter damage or shrinkage, tissue loss, inadequate or delayed myelination, glial scars, etc.. were observed.

OEC’s were injected into a key location in the frontal lobes of the brain- ie- “Key Point for Neural network Restoration (KPNNR)." The theory being that the injected OECs would produce Schwann cell-like myelin sheaths around demyelinated axons.

The results of the study are amazing, despite the small sample size of the research. Dr. Huang, concluded OEC KPNNR transplantation may be effective for functional improvement in CP children. "Our results showed that transplanting OECs into CP patients could improve the neurological function of the patients and did not cause significant side effects. The procedure may be a plausible method to treat this as yet incurable disorder."- Dr. Huang.

Read issue 19(2) Cell Transplantation publication here