>Revisiting LDN and Implementing What We Learn

>When we consulted with Dr Jeff Bradstreet in November, both the girls were frequently ill. Looking at our then protocol, he advised us to stop LDN as it acted as an immune suppressant in both girls.

Looking back over my previous conference notes from Dr Jacquelyn McCandless presentation in Hong Kong last year, I realized where we went wrong with the LDN. She emphasized that the immune benefits of LDN will only work whilst on a strict GFCF diet. And as you know, we are no longer as strict nowadays with the diet. Chatting with a friend regarding LDN recently, she noticed no changes positive or negative for her child whilst on LDN. Even though she is extremely strict on the diet. Whereas I saw lots of affection and social gains on LDN but didn’t do well for their immune system. And as you know, my husband Paul was on LDN too and he too did not notice any improvements, neither did he fall ill. It goes to show, that everyone will react differently to a supplement.

It also served a valuable lesson to me, reminding me to not only research a new treatment or supplement thoroughly, I also had to remember to actually implement what I learnt. No point going to all those conferences and reading all those books if I didn’t apply what I learnt properly.

It also served to remind me that in trying to heal my children, there is always a risk associated with any medical treatment, be it mainstream or alternative. There are always side effects and interactions with other drugs or supplements. Always consult with an experienced integrative care medical doctor especially when you are doing Tier 2 and Tier 3 protocols. There are many brave parents out there who choose not to work with a doctor, many of them do well and some don’t. If you choose not to work with a medical doctor to manage your child’s biomedical treatments, then always be vigilant with the safety of your protocol and be mindful of where you get your information from. For these parents, I strongly encourage you to attend an international biomedical conference. The Autism Research Institute’s ARI Conference (previously known as the DAN Conference) in Spring will be held in April 2011 in Atlanta, USA and the Fall Conference will be held in October 2011 in Las Vegas. Please visit www.ariconference.com for more information. The Autism One conference is held yearly in Chicago in May. Please visit www.autismone.org to learn more. There are also other biomedical conferences held worldwide.

For parents who are doing Andy Cutler’s chelation protocol, affectionally known as the AC protocol, if you do not have a medical practitioner to monitor your child’s protocol, Andy Cutler is a frequent speaker at the Autism One Conference. Chelation is a Tier 3 treatment that requires care and extensive knowledge to implement safely. And please join his Yahoo Group forum.

I encourage you to join support groups, organizations and forums that believe that Autism is not just a psychiatric disorder and that Autism is treatable. I value the advise and guidance of a trusted and experienced Biomed doctor, but for those who choose not to, do make sure you know what you are doing. A reminder to myself to keep learning, remember to implement what I learnt, listen to my instincts and always prioritize safety and care when implementing biomedical treatment. For parents in Asia, please join the KL Biomed group at http://health.groups.yahoo.com/group/klbiomed/

Good luck to all the Warrior Mums and Dads out there, my comrade in arms. Though our children and our treatment methods all differ, we are all parents. We do what is best for our child, in the manner we feel is best. A couple of years ago when discussing the stress and pressure that Autism brings to the family, someone expressed their sympathy to me and mentioned the burden it must be to raise a child with Autism. My momentary bout of self-pity flew out the window immediately when I raised my head and said “My daughter is not a burden. It is a privilege to be her mother.” And since then, I have never felt regret, self-pity or guilt. It is indeed a privilege to be Maya and Yasmin’s mum. 

>LDN, Pneumonia and Bangkok….

>We have started on LDN (Low Dose Naltrexone) a couple of months back. It is a topical cream based in Emu Oil to be applied at night. We saw Dr Jacquelyn McCandless’s presentation at an Autism Conference in Hong Kong and were highly impressed with her research and clinical experience with LDN. Please refer to Dr J. McCandless work on the benefits of LDN. You can also join her LDN Yahoo Group at  http://health.groups.yahoo.com/group/lowdosenaltrexone The use and benefits of Low Dose Naltrexone (the key word here is low-dose) are varied. Not just for Autism, but also multiple sclerosis, cancer and other autoimmune diseases. I also love Dr Kurt Woeller’s succinct explanation of LDN, very easy to understand. Please refer to http://drkurtwoeller.blogspot.com/2009/01/autism-benefits-of-low-dose-naltrexone.html

After several months of wrangling to get LDN into Malaysia (thank you RR for making this happen!) we finally got our first supply of specially compounded LDN cream. We immediately started applying it on Maya’s feet every night. Though many parents report that the smell is lovely, for us it smelt awful. My husband akin it to buffalo snort. Though how he would know what buffalo snort smells like, I have no clue. We hate the smell but love the effect.

From your own research, you’ll understand that amongst the many benefits of LDN, it also works as an opioid-blocker, which indirectly increases the production of endorphins- the happy hormone. It’s role in immune-modulation is also a big incentive for us to start on LDN fast.

Within a week, both Paul and I noticed some nice gains in Maya. She was more loving, more sociable and very sweet. Though Maya has always shown us love and affection, we saw a more loving, caring and compassionate side of Maya. She was much nicer to her sister Yasmin, she made friends very easily and was more at ease in social situations. Maya would also seek our company more, always coming over to give us hugs and kisses. She was even hugging and kissing her sister. And she started giving and receiving hugs from her own friends as well as well from close adult family friends. She showed a depth of emotion that we never realized possible. We always felt that Maya was already warm and loving. But after just 1 week of LDN, she showed a generosity of spirit that was so apparent to us.

Paul was excited to try LDN on himself too as we were very impressed with Dr McCandless herself. She is a living testament on the benefits of Biomed and LDN. For some reason, Paul was in charge of applying LDN on the girls. He also applies it on himself. Initially I would play the good wife and gave him a foot massage every night with the LDN, but that ended after a few days.

After the first week, we decided to apply LDN on Yasmin too. Yasmin has aways been more sociable and affectionate than Maya. However one of the many benefits of LDN is it’s positive effect on the immune system. As you know, immune dysfunction is a huge issue in our household right now. And yes, Yasmin too was even more loving and cuddlier than ever. Both girls got along even better than before, not only were they playing together more often, there were less fighting amongst the sisters. They were considerate to each other and even sharing toys and games.

We love the social gains and new range of positive and loving emotions that LDN brought out in Maya and Yasmin for the past few weeks. However, this also coincided with a seemingly never ending period of colds, flu, mild fever or coughing. Both the girls were either coming down with a cold or one of the other illnesses. None of the illnesses were particularly serious, they were considered mild but they would linger on longer than usual. 

As some of you know, the colds, flu, coughs and fever lingered on in our household for a few weeks. We tried many natural remedies to treat them which unfortunately did not work for us this time. It finally developed into full-blown pneumonia, both girls were diagnosed with pneumonia by our local pediatrician. It wasn’t severe enough to warrant hospitalization, thank goodness. We took our two little girls home with a prescription of antibiotics and other medications. Antibiotics when used judicially is a great, in this instance it came through for us. Within 2 days of antibiotics, we noticed a great improvement in the girls’ health.

The girls now are recovering nicely from their bout with pneumonia. Maya no longer have any symptoms though Yasmin is taking a little bit longer to regain her health.  Maya however seemed just a little bit giddy, a bit more tantrummy, she displayed slight non-compliance and anxiety.  Both girls seemed to be fighting a little bit more often. As usual, whenever the girls are on antibiotics, we started to notice some kooky yeast behavior a few days later. We quickly put Maya on Diflucan and Yasmin on Nystatin. Within HOURS of giving Maya the Diflucan, she was back to her normal, sweet loving self. She wasn’t picking fights with Yasmin and was more compliant. 

So where does LDN come into this story? Paul and I were scheduled to fly to Bangkok the next day for the Integrative Medicine for Autism Spectrum Disorder Conference in Bangkok, Thailand. Apart from the opportunity to learn more about biomedical treatments and other alternative treatments for Autism, we also took the rare opportunity to consult with Dr Jeff Bradstreet. Sometimes, the universe seems to collide in the nicest way possible…..one of our own trusted DAN doctors from Indonesia was also attending the conference. We knew that Dr RA has also worked with Dr JB several times in the past, having met him at previous DAN conferences and think-tanks. I requested for her to join us in the consult with Dr JB. 

Paul and I decided not to bring our girls along to Bangkok, we had specific issues we wanted to consult with Dr JB and we had enough test results and experience with biomed consults to make the most of this meeting. Having Dr RA there was a huge bonus, Paul and I marveled at how quickly Dr JB got to the essence of our girls with the help of Dr RA. The consults for both girls took 2 hours, which still went pretty quickly to us. Dr RA was able to answer many of Dr JB’s more in depth questions, questions which both Paul and I would be floundering with. We came back with several things to work on, getting deeper into both Maya and Yasmin’s medical issues. 

Both Maya and Yasmin presented their own unique combination of mitochondrial disorders, heavy metal toxicity and inflammation. Because of these, LDN though providing us with the lovey-dovey and sweetness benefits, also acted as an immune suppressant for my girls. Thus making the girls more susceptible to illnesses. Therefor, we now had to stop LDN with the girls, at the moment the risks far outweighs the benefits. Many other kids can benefit from LDN enormously, bringing out the happiness, good moods and social gains. Most kids will benefit from the immune-modulating benefits of LDN, however with my girls’ unique mitochondrial issues, LDN isn’t the best for us. Dr JB and Dr RA will now concentrate on  helping us with the girls immune modulation, mitochondrial issues and chelation. Since Paul and I bemoan the loss of the sweetness factor of LDN, Dr JB recommended Oxytocin instead. For now, I’m happy to be back home in KL with both my girls and am gearing up to implement the long list of things to do that we learnt in Bangkok.