Sunday, February 21, 2010

In for the long haul!

Chescia strated college on Wednesday an 18 month nutrionist course at the ACNT - sadly she lasted 2 days. Day 1 was great but tiring, day 2 a disaster, vomiting , seizures and other things.

Since then, she has had good and bad days but still faces iussues to do with the re-mergence of CFS, allergic reactions to all things, seizures and continual fatigue.

We continue with kinesiology and believe it to be of great benefit and the IV's of B and C and zinc/magnesium supps.

We believe she will get through this and will be tougher and more balanced human being as a consequence, but boy is the price high!

On a different note - the activity being undertaken here in Australia and elsewhere re the issues with Gardasil continues to grow and I have the feeling that this year Merck will be swamped by issues and media coverage. I am now in contact with 20 Australian young women badly impacted following gardasil and the numbers grow weekly.

Interestingly at a recent conference in Europe on HPV "Eurogin", I was advised by an attendee that the Australian contingent a) denied any issues re adverse reactions to Gardasil and b) when questioned on this merrily pointed out that they rolled out Ian Fraser to deny any possible link to Gardasil - I say Ian watch this space as you are about to be found out and that you are a shallow and ignorant person whose reputation and future will likley be sorely challenged by the truth being out!

Wednesday, January 20, 2010

Two steps forward 2 steps back?

Bugger, bugger, bugger! Just as it thought she was on the rapid road to recovery - issues again emerge.

For the last 2-3 weeks, Chescia's allergic responses to food have again arisen. She has had one seizure and her breathing issues re-emerged.

The kinesilogist at Levity Centre (Ros) has helped in clearing foods but she continued to lose weight and was tired all the time.

Chescia's immunoglobulin levels are too high and we are now advised her Chronic Fatigue Syndrome has returned!

She is now seeing another kinesiologist who is treating her breathing and CFS issues at a deeper level (and a number of other girls too) and believes he can assist but it will take months.

The good news is Chescia has enrolled to complete an 18 month nutritonist course at ACNT starting February, so we hope a study focus in an area of value will help her focus.

Onward and upward!

Sunday, December 6, 2009

Update 7th December 2009

Chescia has been slowly recovering for the past 4 weeks.

She maintained her simple diet, together with weekly visits to nutrionist, Doctor (for acupuncture, cranial osteopathy and IV of C, B, Zinc and Magnesium as well as kinesiologist.

Ten days ago she got a cold and things deteriorated, with alergic responses to food returning etc. However her mental attitude remains strong and that is a huge improvement.

She gets out and about although physical exertion remains a problem.

She has kept off the 8kg - no surprises given what she eats.

Perhaps the greatest thing that has happened - is her change in attitude. She surprised me last week, when she advised that "Gardasil was the best thing that ever happened to her"!!!!! What?????

She explained, I no longer take anything for granted, a day, an hour, sunshine etc. I appreciate what food was, what friends are for, good health and the opportunities ahead and much more... it was wonderful to hear.

She now hopes to study nutrition and use the last 9 months to find a life focus and a role that helps herself and others.

Tuesday, November 10, 2009

Update 11th November 2009

A roller coaster 2 weeks.

Over the last 3 weeks, Chescia has lost 8kg in weight. Her diet was very restricted and for 2 weeks only ate bolied vegetables and rice. All chemicals (as far as we could have been eliminated from her life), deodorants, perfumes, make-up etc etc.

She still had severe allergic reactions to foods - swollen tongue and throat and even when presented at Hospital Emergency they would just administer an anti-histamine.

Over the last few weeks we have persisted with; weekly acupuncture, cranial osteopathy and IV's of Vitamin C and B, Zinc and Magnesium. Two weeks ago we commenced bi-weekly kinesiology and that appears to have made a big difference.

She has had no allergic responses for 5 days, she now eats, pasta, chicken, tuna, eggs and has put on 2 kgs'. Tachycardia is reduced and she has been out and about a few times. Leg tremors have also reduced and the sugar highs/lows similarly.

We have been here before, but fingers crossed - perhaps a rubicon has been crossed!

Thursday, October 29, 2009

October 30th 2009

When will it end? Just as we thought Chescia was getting better, new health issues emerge. Now she is having severe adverse reactions to food. These result in her throat and tongue sweeling to the point where she has been rushed to emergency on 3 occassions in the last 2 weeks. As a result and in concert with a nutrionist her diet has been further amended where she just eats bolied organic rice and steamed vegetables. We have in the last 2 days introduced organic baby food. As a result she has lost 6 kg in the last 2 weeks, most in first week.

She still sufferes from a racing heart, she blacks out and collapses and generally feels very weak all the time.

We have resisted all chemical meds and keep her clear of anything that is not natural.

The poor kid is now sounding depressed (and why not) so we may need to consider some form of counselling.

Very tough at the moment.

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.