Further medical details

 

for Ruby, the Trust's Case Study participant

 

Ruby Penney is now 9 years old and lives in Wellington, New Zealand. Ruby was, until August 2010, a perfectly healthy, happy little girl. She became ill following a family holiday to Australia.

Initially Ruby suffered persistent stomach pains, which became progressively more acute. With a severe headache and temperature of 40c she was admitted to hospital overnight on 28 August 2010 and sent home the following day. On 30 August Ruby experienced a serious seizure and was admitted to hospital via ambulance, where she remained, suffering up to 60 seizures during the first 2 weeks, until she was given Cephalosporin antibiotics.Following this treatment she became seizure free for a month.

Once these antibiotics were stopped the seizures returned, increasing in number, duration and severity every month until they reached up to 70 per month in April 2011. Ruby developed a range of other symptoms including skin lesions, rashes, vomiting, disrupted bowel activity, short-term and long term memory loss, acute headaches, acute abdominal pain and aponeic seizures. Ruby's cognitive functioning also declined dramatically.

An inpatient paediatric neurology assessment was obtained, which was unable to determine the cause of her underlying illness.  Ruby was commenced on intravenous antibiotics (which currently makes up the primary part of her treatment) after consultation with an infectious disease specialist and  a paediatric assessment in Australia and Ruby's care was transferred by her infectious disease specialist to the doctor specialising in treating Lyme and tick-borne disease in Australia and who continues to manage and oversee Ruby's treatment.

Ruby has experienced a dramatic improvement in her symptoms since she began taking the antibiotics, which she had to travel to Australia to get. Ruby's parents wish to continue with the treatment recommended by the Australian expert as Ruby is clinically improving as a result of that treatment.  However the family is struggling to fund the cost of the medication as her treatment is not currently funded in New Zealand. Ruby's family continue to work with New Zealand doctors in relation to Ruby's day-to-day treatment.

As part of a Case Study designed to advance awareness and an understanding of the disease the Trust needs to consult with experts in the United States where Lyme like illnesses are more prevalent.

It is particularly important that Ruby continues to receive the antibiotic treatment, as this is improving her condition and appears to be treating and controlling the symptoms of her disease. Ruby has had four notable occasions where antibiotics were discontinued and her condition significantly deteriorated. Once recommenced on intravenous antibiotics Ruby's continued improvement has been noted clinically. Ruby currently has a central line in place to receive long term intravenous antibiotics.

The Ruby Red Trust will continue to fund this treatment as part of the Case Study whilst finding a long term solution for kids like Ruby remains the primary objective of the Trust.

 
 
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