Saturday 31 August 2013

[Everything doTERRA] 3 yr old with PKS (Pallister-Killian Syndrome)

Hello everyone!! I was at the nail shop today when a lady came in and sat next to me to get her pedicure. In a stroller next to her sat her 3 yr old little girl. The cutest little thing, with the fullest, rosiest cheeks that I have ever seen, so adorable. But, being a nurse, I was quick to realize that she had facial characteristics that were abnormal. She was very quiet and look extremely lethargic. She had that, what we call in the ICU the "post ictal" look, or a look like she had just experienced a Grand Mal seizure. Very tired and droopy-eyed. After sparking up conversation with her mother, I quickly learned that she had PKS or Pallister-Killian Syndrome, which is a rare disease that is diagnosed after genetic screening. It is identified when a patient has 4 short copies of chromosome 12 instead of 2 normal copies. It involves facial abnormalities, mental retardation, developmental delays, decreased muscle tone, heart, kidney, and digestive issues, and of course seizures. The literature says that there is no cure or treatment for the disease and only the presenting symptoms associated with the issues that it causes are treated. So she is currently taking Keppra for seizures (which explains her post-ictal look), she has had surgery already for mal-formation of the intestines. She has the decreased muscle tone, causing her to be unable to walk or feed herself at the age of 3. Her mother explained to me that now feeding has become harder for her. If anyone has any knowledge or experience with this disorder and can guide me in a direction of where to start for this precious 3 yr old little girl. I would greatly appreciate it. I got the chance to show her different testimonials on you tube about Doterra EOs, and we exchanged info. So I would love to provide her with all of the information that I can. It would be wonderful to at least be able to get her off the seizure meds if possible, so she could at least be awake enough to want to eat.

Thanks,
Darcell

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