A year on May 2020.

May-Photos-3

My daughter was born on May 1st 2003. She exploded into our lives like a burst of pure, positive, love energy and my life was never the same again. When she was 12, she befell a sudden and extreme breakdown and onset of chronic and debilitating OCD. She was bedridden for 5 months and housebound for 7. In the first 5 months that she was ill, she did not leave her bed other than to go to the loo, which could take anything up to about 3 hours to make it across the hallway in pure fear of germ contamination. We waited for 7 months to be admitted to a children’s hospital for mentally unwell kids. We are still traumatized from the experience and hope that no one has to follow in our footsteps.

In the 5 years since her illness, I have worked tirelessly to help her come back to optimal health. Last year I wrote a piece on May 15th, detailing the chapter of our lives where we began to seek alternative treatment from mainstream, which until then, had failed us time and again.

You can read that post here

https://lovepda.wordpress.com/2019/07/09/15-may-2019/

I felt it was time to recap on what we have achieved in the last year and where we sit today. Since beginning a bespoke treatment of supplementation under the guidance of a highly respected and sought after children’s biomedical naturopath, we have seen improvements of up to 90% of total wellness.

We worked with DNA testing, gut testing and blood testing to gain a picture of what was going on on a biological level within the body. We have not been able to prove PANS but suspect infection had a part to play in the sever OCD breakdown.  Alongside this, we ensured our diets were as wholesome, clean, chemical and color free as possible and we discovered that red foods were a major disrupter to both my daughters and my own brain. Effecting in a huge way, our moods and reactions. This discovery was key in realizing that not all foods we think are good for us are and that each person has a unique way of reacting to foods, toxins and environments.

https://lovepda.wordpress.com/2020/02/26/explaining-why-we-stopped-eating-red-foods-to-reduce-anxiety/

I joined a community of clever people who are passionate about holistic health and sharing their knowledge from a biological approach and I learned a lot. I also learned that there is so much to all this and I will never be able to get my head round it all! But I learned that the deeper we got in and the more amazing results we were seeing, that my views on the closed books of mainstream thinking were becoming less and less appealing to me.

We have gone from being completely unable to achieve every day tasks that most take for granted, to saying yes and getting on with things with next to no anxiety. I worked so hard to find ways around the inevitable ‘NO’ that I never even used to ask a question. Now a days, I speak naturally, ask questions, offer opportunities and expect to hear yes. Where ‘Could you please pop the milk back in the fridge?’ would have caused an explosive reaction of fight and flight, was now just an every day passing comment and not a hint of anxiety.

The no hope, no desire, non interest, fear of everything has been re placed with ideas for the future, friends coming to the house to hang out. Makeup, a complete re style of clothes and image, personal grooming.

No school work for 5 years, thats the majority of her childhood, is paving way to ideas and being able to write again. For many years she could not and would not even pick up a pen. Adapting to drawing with her finger tips straight onto an IPad, she self taught what she needed and wanted to know. She now sees a future for herself in the arts.

Not being able to sit on the sofa, or any soft chairs, now, not a problem. Climbing trees, running, doing push ups, sitting on the floor. All things she could not do for 5 years.

If any of you dear readers know what it is like to suffer with OCD, you will know that it creeps over almost everything you do. Today, her routines, which would take 4 days a week out of her life and hours and hours of painful stuckness, have reduced significantly. We are still discovering what spikes OCD and what calms it.

I have not heard screaming in mental torture for about 6 months now. Some days I have to pinch myself to ask, did the last 5 years really happen?

We also decided as a family that we needed to move from the rural property we resided in for 11 years. The move was huge and has taken a year to complete. I do wonder if there were any environmental factors that may have contributed to her illness. Knowing that she has 2 mutated genes that effect her bodies ability to remove toxins, I wonder if farmers spraying crops or the dust from the shingle road had a part to play. I will never prove it of course. However, my gut tells me that the move into the city was the right thing to do.

Other than all of the things above, from a Mothers point of view, I have never given up hope, though believe me there have been plenty of days where I have felt hopeless. I have always accepted where we are and who my daughter is and I have vowed to learn positively from the hard and dark times we have been through. I so could have put my energy into feeling angry at the lack. But I knew that I must follow what felt right. I have learned that loving myself and giving myself care and routines that support myself (like EFT and yoga) along with deep and meaningful friendships are the key to a happy, strong life.

I do believe that there are many families searching for answers for their children and that the biomedical world is one which can feel frightening to trust. We are so used to only trusting our GP and the referrals that they make that taking the decision to fund and seek alternative help is daunting. I am here to promote taking that leap and we are living proof that it can and does work. We had nothing to loose and we gained everything.

As far as our PDA status goes, my daughter is and always will be a super smart, individual girl with bags of personality. She knows who she is and what she wants. She will not suffer fools.  With anxiety way down, ability up, we can see the wood through the trees.

We still have room for improvements and she may well have to depend of supplements and diet awareness to aid her bodies sytems for the rest of her life, but that’s a small price to pay for peace of mind and a widened life. I cant say whether these things will need to be monitored and tweaked as she develops into adulthood. I hope I have done a good enough job as Mum and guide that she will discover her own supports and ways to wellness.

The future finally looks very bright for us and I hope that it can for you too.

If anyone would like further information about anything here, I always love to hear from you.

I would like to dedicate this post to My Mum, who is just the loveliest person anyone could meet. My  husband, who puts up with me when I’m being a shit. Sam, without whom, I would not so easily have trusted the path I was to take and my friend Lindsay, who lights me up every day. To everyone who has shaped the person I am today and my children, not enough words to explain my gratitude.

Thanks for reading. Take care. x

 

 

 

 

 

 

 

4 thoughts on “A year on May 2020.

  1. Wow Mel Thank you so much for sharing and being inspirational as ever! Lots of love to you all x

    Sent from my iPhone

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  2. I have followed your blogs with interest, since our paths have been very similar. I’m so glad to hear of the successes you’ve experienced in recent years. I’m wondering, though, what was the key to bringing your daughter along on this journey. My daughter is now 20 and I first recognized the PDA at age 15. Shortly after that, she developed Anorexia, which she continues to struggle with today, along with other mental illness symptoms. I became very interested in natural approaches (and even got kicked off the PDA parent site when I posted a link to a webinar!), and tried to help my daughter that way. I’ve never found a way to compliance; she insists on doing only what she wants. She will humour me at times, trying something, then give up almost immediately (after the initial $$ investment has been made!). And with the anorexia, it’s almost impossible to get her to eat well at all. So how did you accomplish a shared journey with your daughter?

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    1. HI Diane, I was lucky to find the right help. I have learned that anorexia and extreme demand avoidance can also be a symptom of PANDAS or PANS. It can also have it’s roots in a pathogen/ infection. I have heard accounts of anorexia being cured with the treatment of the pathogen. We did not find any evidence of it but I felt it was worth investigating. You may want to do some more investigation in these areas? PM me on Facebook if you would like to chat further. With regards to your question how did you accomplish a shared journey. We both had an individual perspective but a shared drive to be as well as possible I guess. Trust is the key. This takes time and gentle, respectful parenting and a loving relationship, which I’m sure you know, the foundations need to be strong. Take care xx

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