Life after 2 years of marathon...(Part 1)

It's April, so its Autism Awareness Month again!

And Aishah just turned 8 last February. This April is exactly 2 years since I last updated this blog. While some people update their blogs every hour, some daily, some monthly, this mum takes two whole years to update a post...haha, lol. Anyway, life has been a complete roller coaster ride for the past 2 years. Let me start by recapping what we have done ...

Around October 2008, my husband and I flew down to Jakarta to see a lady DAN (Defeat Autism Now) doctor , Dr Rina Adeline on recommendation of a very good friend , Marissa Bagshaw, who is also a mother of now a recovered autistic child. Her daughter also sees Dr Rina as their second doctor. We flew down to Jakarta bringing Aishah and was asked to do many 'biomedical' tests which includes the Organix Acids Test (OATS), Urine Phopyrins Test, Hair Test, Stool Test, RBC and a whole list of other tests from a specialty lab that requires 5 huge vials of blood to be drawn out of my poor girl. God knows much of a struggle it was to even get the first vial of blood that by the 3rd blood vial, my husband and I have given up being so stressed that we were practically screaming to each other, to all the lab people there and to our doctor who weren't there (screamed at her on the phone). So we had to call it a day at 3 vials. The next day, the lab team came to our Jakarta apartment trying to draw 2 more vials from her and to collect her poop. And, ohhh.. the poop is another long messy, disgusting story...which i don't want to mention here!

So around a month after that, we flew back to Jakarta for the all the test results and interpretations. She tested extremely high in lead, mercury, aluminium and a whole load of other metals. She had severe leaky gut issues that when we started the GFCFSFCF diet , we immediately saw some great results. No head banging, less self injury, less severe temper tantrums and she slept like a baby. We also started on basic supplements like Calcium, Magnesium Glycinate, Zinc Picolinate, Ester C, Enzymes with DPP IV and others after the 2nd consultation and we saw her got even better than just on the diet alone. Her ABA therapies improved in the sense that she was more 'teachable' and was more 'present'.

Biomedical was so new to us then, that we had to do a very detailed supplements chart, checklist , timetable and a daily journal to chart Aishah's day to day behaviours. We chart her poop texture and colour, her appetite and everything else there is to chart of a 6 year old child. We were hiding her supplements in her rice, noodles, soup, cookies, chips and milk so that she will take them all and that on itself was another huge struggle. So we went back and forth, trying what supplement tastes okey with what, starting so slowly and working up so that she would eventually get her full required dose of supplements daily. So much effort, mess, wasted food and wasted supplements not to mention the huge stress to get to just the full dose of daily supplements as recommended by her DAN doctor.

With every consultation that we had with Dr Rina in Jakarta during that time, we will be bringing a huge bag of supplements checklists, behaviour journal, food and poo tracking journal and previous test results and printouts of all my research works and articles (to discuss with her)....sometimes when I am so tired writing down the exact ingredients of each and every new supplements she takes to discuss it in detail with Dr Rina, I'd just bring the whole lot of bottles and arrange it before her eyes :-) Never once this good doctor showed me an expression of shock or disgust!

I will also have sleepless nights prior to flying to see her due to the brain stormings of preparing my questions and the anxiety of getting to meet my child's 'healer' it indescribable...After each consultation, I will be so exhausted but relieved that i have poured out my worries from my head and shoulders onto hers..it was a great start of biomed, a great teamwork between two people who are serious in bringing back my lost child...and so, off we went...experimenting from one thing to another, adding on this and that and becoming poorer and poorer but happier by the day!

We started on anti fungal therapy, MB12 injectable treatments, Glutathine suppositories and our first chelation using DMSA suppositories (due to Aishah's extreme high lead toxicity) at our 3rd consult which was around February 2009 . Aishah was, as I believe the first ASD child doing chelation treatment in the country ,then, so it was so scary. I didn't know who to compare notes with, what to expect except relying heavily on Dr Rina's support and assistance. That was around when Marissa and I decided that we needed to gather other families doing biomedical treatment in Malaysia for support, advice and resources. we both know it gets very lonely traveling on a road so new and unconventional such as this , and so, in early 2009 KL Biomed Support Group was born with only 2 mothers as members, Marissa and I, and I have Marissa Bagshaw (the group owner) to thank for , for all her hard work of setting up a great support network place for Malaysia parents who are new to biomed!

We are still doing daily 5 hours of ABA home program up to this day and Aishah has since grown out from being a very severely autistic child to what i'd say moderate functioning and mild to moderate autistic child category. By today, we have done countless more new supplements and treatments including Low Dose Naltrexone, Anti Parasite Treatments, Low Dose Chelation and many more under Dr Rina. With all these and more, Aishah has bloomed in many areas including self help skills, cognition , receptive and expressive speech. Though her speech vocabulary is still very limited and sentences still restricted to 3-4 words per sentence, her articulation is so much better and her spontaneous demands are common now.

As all her demands are fully understood and met, Aishah has turned into a healthy, loving, calm and well-behaved 8 year old child with no aggression and no self injurious behaviours like before.
While her road towards recovery is still very long ahead of us, her road coming home towards us is clearer now. Though we may not get her back whole due to where we started and her severity we are still certain that most of her will be back one day. And when that day comes, we will be looking back at how hard we have fought all those years and glad that we never once stopped or hesitated, never took a break or even slowed down, while she was drowning helplessly within her own dark and lonely world.

Love does not take a holiday, and so does discipline..

I will share of our journey with her doing other alternative treatments within this 2 years including our great experience travelling with her to India in Part 2 soon.

In the meantime, Good Luck in your own journey towards recovery!