Sunday, September 27, 2009

Update 27th September 2009

Chescia came out of St Vincent’s Hospital; 8 days ago, after 17 days admission. During that time she was wired to a remote ECG for 17 days, she had several EEG’s, all kinds of blood, lung function and sleep tests and attended to by Professor Ron Penny (a leading immunologist), Dr Garrick (a leading neurologist), cardiologists, psychiatrists, asthma specialists and others.

Whilst all accepted she faced physiological issues and witnessed most of them; shallow respiration (low C02), continuous leg and other extremity tremors, heart rate fluctuations 70 bpm to 183 bpm in moments), seizures (they recorded them as events) and anxiety attacks as she felt the physiological symptoms emerge – not one could explain why!

The seizures were new to her arrival at hospital and appeared to be triggered by effort, (a shower, a short walk along the corridor) and “amped up” by her rising levels of anxiety. The Psychiatrist helped her with tools to control these to the extent that in the 6 days before she left hospital they all but disappeared but the other symptoms did not. Prof. Penny said he would call it “Tunley Syndrome” and sent her home.

Now at home – the respiratory, tremor issues remain – she complains of being constantly short of breath and is forever breathing into a paper bag. However the seizures have also returned and these now involve convulsing, whereby she blacks out convulses and stops breathing-it is very, very frightening?

I have no idea where to go or what to do next – any ideas or directions?

Monday, September 21, 2009

Update 22nd September 2009

Chescia, spent 17 days in St Vincents Hospital Sydney under the care of professor Ron Penny the immunologist. She was attended by cardiologists, neurologits, pyschiatrists, sleep and athsma specialists and more.

Whilst in hospital she had her first seizures which over a week or so, got progressivley worse. Following a visit by the pyschiatrist, we managed to implement a program where she could control the seizures and in particular anxiety 'amping these up'.

Several of the specialists advise they believe the link between Gardasil and her issues, but could not prove it.

She is now home. Has respiratory issues, leg tremors, is exhaused by the smallest amount of physical activity, has a loss of appetite and more.

At hospital we resisted using any medication and are now looking to natural healing options.

Really this has been a most distressing time for Chescia, her Mother and me. We have not doubt that Gardasil triggered this and remain determined to get Government and others in power to address these issues and quickly.

Please keep looking at for updates.

Tuesday, September 8, 2009

Update 9th September 2009

Chescia remains in hospital - generally her mood is more upbeat, however the leg tremors continue, as do the POTS type symptoms of tachychardia, mild seizures, weakness in limbs etc.

However, she has now had two athsma attacks and was placed on ventolin, her oxygen levels are low so she is on oxygen, she is suffering chest pains, (but ECG and other tests show as normal) and finally she now has signs of sleep apnea.

Its very much two steps forward and one step back at the moment.

Sunday, September 6, 2009

Update 7th September 2009

Our daughter has been in St Vincent's hospital for six days under the care of an immunologist and neurologist.

She has been now been diagnosed with POTS Syndrome or POTS Syndrome type symptoms (Google POTS and Gardasil and see others that have faced this).

She had an EEG in June which showed disrthmia, but the most recent showed a vast improvement. On seeing this the neurologist commented that he could see the possible link between the 2nd dose of Gardasil and her subsequent health issues, he is investigating 17 other similar cases and is to write a paper on this.

Sometimes she shows signs of improvement and then she falls back. Certainly she is more gregarious and cheerful. but she has severe respiratory isues including having had two asthma attacks on the weekend that required Ventolin and oxygen. She also has tachchardia issues and the temors remain in her right leg. Any form of exercise, even a 100m walk, exhausts her.

To date she is taking no medications and we are keen to maintain this as long as we can as the thought of further chemicals in her body is an issue.

What is becoming apparent to me is that Gardasil clearly is an issue with some people and I supect those with AID type issues or a predisposition to AID (genetic?), face a challenge when it comes to the use of Gardasil.

If you read this and have a family history of Auto Immune Disease or your child has or could suffer from Glandular Fever, Epstein Barr, CFS etc - then please inform yourself PRIOR to having your child (or yourself) vaccinated.