I recently returned from the Mindd conference in Sydney (www.mindd.org) The Mindd Foundations mission statement is 'Mindd Foundation is committed to improving the lives of Australians by promoting Integrative Healthcare that treats the source of illness in each individual with the aim of helping them to reach their full potential and enjoy a life of health and happiness'. Mindd is an acronym for Metabolic, Immunologic, Neurologic, Digestive and Developmental. Mindd focuses on the idea of 'Healthy Bodies Building Strong Brains' as it is believed that; Allergies, asthma, ADHD, anxiety, autism, learning delay, depression, obesity, diabetes, digestive and mood disorders often share underlying and overlapping issues of nutritional deficiencies, toxicity, infections and/or a dysfunctional digestive system. SO - Yes the conference was very intense, with a huge amount of information to absorb and some inspirational speakers who reinvigorated me in my quest to ensure Alice has the best possible chance to be healthy and to have the quality of life she deserves.
My one conundrum is that no matter how much time I spend researching and investigating and trialing and loving; I do not have enough knowledge of health and nutrition to ensure I get exactly the balance required to optimise Alice's health. I know I am on the right track, and I have been fortunate enough to meet so many people along the way who help us on our journey ... but no one seems to have all the pieces of this puzzle ... So a dedicated team of knowledgeable professionals who live and breath this particular area of care is what I have been searching for (never to be an exclusive group but a solid core!). I am not naive enough to expect a cure for CDKL5, or a complete reversal of the early damage done by intellectually limited doctors blinded by their own arrogance (does that sound bitter???), But improving Alice's quality of life and maybe finding a management for the condition (... like Lorenzo's Oil - an inspirational family and a simple management for a devastating genetic condition) is surely not too much to ask.
The Philosopher Voltaire wrote 'Doctors prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of which they know nothing' - unfortunately this is so often true, and we, as a well trained, educated and modern society let them! One of my biggest battles (in the distant past) was with Pharmaceutical companies who feel the need to put artificial colours and flavours in our 'already toxic' medications. One Anticonvulsant medication Dilantin (liquid form) contains the colours Sunset Yellow and Quinoline Yellow - both banned in the USA, and in Australia we have been lobbying to have them banned in our food. These colours have been reported to cause seizures in a small number of cases (and they are in Anticonvulsant meds!) BUT when I discussed this with the Pharmaceutical companies they said the colours and flavours were in the meds to make them more appealing to the consumer - but they had no detrimental effect on the action of the med. THEN ... but they were unable to take the colours and flavours out as they would have to carry out extensive and expensive research before re-releasing them (why ... if they are just there to make the meds look and taste pretty????) Well .... you can see why I started looking for other options as a preferable approach to health care! (Note: Don't forget there are Compounding Pharmacies who can make up almost any medication you require but to your unique specifications ... eg. without the colours and flavours!)
Back to the conference ... It was an inspiring weekend - listening to medical professionals who were not only amazingly knowledgeable but passionate about their area of expertise and about the difference they could make to the lives of our children.
One particular speaker (I went specifically to listen to) is Dr Nancy O'Hara from the USA who is a Paediatrician dedicated to the integrative and holistic care of children with neurodevelopmental disorders and ASD. There was also an animated speaker David Quig (USA) who's particular area of interest is the effect of heavy metal and chemical toxicity on nutrition and metabolism. Julie Matthews is a nutrition specialist, also from USA, who writes books including "Cooking to Heal" and is more passionate about food than any person I know! There were also a number of other doctors, health care professionals and specialists from around the globe who ensured I wrote pages of notes and didn't nod off once during the entire 2 intense days!
On the Sunday I met with Dr Nancy O'Hara who, luckily, remembered my name as I had contacted her by email previously. She agreed to a consult with me on the Monday ... SO after an intense Sunday night (filling in a 24 page questionnaire and ensuring I went to the meeting armed with a list of reasonably intelligent questions ... I didn't want to let Alice's side down!) I spent an intense 2 hours with Nancy and her team (including a specialist based in Sydney) AND they agreed to take Alice on as a patient ...YIPPEE!!!! One step at a time ... I realise our journey is going to be life long, but each step gets us closer and I feel this step is another 'Giant step for Mankind' ... at least in relation to us.
I do love my quotes ... as you may well know ... so here are a few more I collected at the conference.
"Let food be thy medicine and medicine be thy food" Hippocrates
"We must be the change we wish to see in the world" Gandhi
"Do not go where the path may lead. Go instead where there is no path and leave a trail" Emerson
P.S I think there should be a prize given to the person who can count up how many times I used the word 'intense' in this blog!!!! X
My one conundrum is that no matter how much time I spend researching and investigating and trialing and loving; I do not have enough knowledge of health and nutrition to ensure I get exactly the balance required to optimise Alice's health. I know I am on the right track, and I have been fortunate enough to meet so many people along the way who help us on our journey ... but no one seems to have all the pieces of this puzzle ... So a dedicated team of knowledgeable professionals who live and breath this particular area of care is what I have been searching for (never to be an exclusive group but a solid core!). I am not naive enough to expect a cure for CDKL5, or a complete reversal of the early damage done by intellectually limited doctors blinded by their own arrogance (does that sound bitter???), But improving Alice's quality of life and maybe finding a management for the condition (... like Lorenzo's Oil - an inspirational family and a simple management for a devastating genetic condition) is surely not too much to ask.
The Philosopher Voltaire wrote 'Doctors prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of which they know nothing' - unfortunately this is so often true, and we, as a well trained, educated and modern society let them! One of my biggest battles (in the distant past) was with Pharmaceutical companies who feel the need to put artificial colours and flavours in our 'already toxic' medications. One Anticonvulsant medication Dilantin (liquid form) contains the colours Sunset Yellow and Quinoline Yellow - both banned in the USA, and in Australia we have been lobbying to have them banned in our food. These colours have been reported to cause seizures in a small number of cases (and they are in Anticonvulsant meds!) BUT when I discussed this with the Pharmaceutical companies they said the colours and flavours were in the meds to make them more appealing to the consumer - but they had no detrimental effect on the action of the med. THEN ... but they were unable to take the colours and flavours out as they would have to carry out extensive and expensive research before re-releasing them (why ... if they are just there to make the meds look and taste pretty????) Well .... you can see why I started looking for other options as a preferable approach to health care! (Note: Don't forget there are Compounding Pharmacies who can make up almost any medication you require but to your unique specifications ... eg. without the colours and flavours!)
Back to the conference ... It was an inspiring weekend - listening to medical professionals who were not only amazingly knowledgeable but passionate about their area of expertise and about the difference they could make to the lives of our children.
One particular speaker (I went specifically to listen to) is Dr Nancy O'Hara from the USA who is a Paediatrician dedicated to the integrative and holistic care of children with neurodevelopmental disorders and ASD. There was also an animated speaker David Quig (USA) who's particular area of interest is the effect of heavy metal and chemical toxicity on nutrition and metabolism. Julie Matthews is a nutrition specialist, also from USA, who writes books including "Cooking to Heal" and is more passionate about food than any person I know! There were also a number of other doctors, health care professionals and specialists from around the globe who ensured I wrote pages of notes and didn't nod off once during the entire 2 intense days!
On the Sunday I met with Dr Nancy O'Hara who, luckily, remembered my name as I had contacted her by email previously. She agreed to a consult with me on the Monday ... SO after an intense Sunday night (filling in a 24 page questionnaire and ensuring I went to the meeting armed with a list of reasonably intelligent questions ... I didn't want to let Alice's side down!) I spent an intense 2 hours with Nancy and her team (including a specialist based in Sydney) AND they agreed to take Alice on as a patient ...YIPPEE!!!! One step at a time ... I realise our journey is going to be life long, but each step gets us closer and I feel this step is another 'Giant step for Mankind' ... at least in relation to us.
I do love my quotes ... as you may well know ... so here are a few more I collected at the conference.
"Let food be thy medicine and medicine be thy food" Hippocrates
"We must be the change we wish to see in the world" Gandhi
"Do not go where the path may lead. Go instead where there is no path and leave a trail" Emerson
P.S I think there should be a prize given to the person who can count up how many times I used the word 'intense' in this blog!!!! X
Three! Twice in the last section. My prize is that I got to read this entry twice. You are doing good in this world, Nicole. Keep it up. Nichola xo
ReplyDeleteHi Nicole,
ReplyDeleteMy name is Ali and I think I have now read all you blog...oh around three times over now, cover to cover. My daughter Molly, who is now one, has suspected CDLK5. We have sent test away however have been told that due to the high cost to get them done they may or may not get back to us as now they have discovered the gene they aren’t and interested in it and have moved onto the next discovery. That said, it certainly looks like that’s what it might be.
When I read your story it was like reading my own from family meetings with doctors telling you there is nothing more they can do – but try this drug anyway, we want to see if it works for future generations – to telling us to have a plan in place if she presents to emergency “science can keep her alive...but you may not want to”. After pretty much trying all medications possible there are only a few options left including the Ketogenic diet which I’m not convinced is a good option and believe it will do more harm than good.
I have always believed even early on before the seizures really kicked in that there was an issue with Molly’s diet and that what she is consuming will correlate with seizure activity.
Reading your story about Alice was truly inspiring and seeing that she is now standing and even WALKING! It is a real credit to you and what you have done. I would love to find out more if you’re available to talk about where you started and what you might recommend. Based on your blog I have purchased the GAPS Diet book to get things started and after never excelling in the kitchen myself I am now going to become a home cook in 2013. In fact I’m off to get a big pot tomorrow to boil some chickens for a broth.
Before I rattle on to much just really wanted to say your blogs have made a big difference in our life and hopefully we can get our Molly up and running (literally) like you have with gorgeous Alice.
Take care,
Ali & Molly
Email: alisoncgiles@hotmail.com