>Purchasing Probiotics, Shipping and Hot Climate….

>

Nothing to do with probiotics, but it’s a cute photo

I usually purchase my Probiotics either online or from my DAN doctors rather than off-the-shelf in Malaysian pharmacies. Firstly, because I’m looking for casein-free Probiotics, nearly all probiotics commonly found are cultured on dairy. As our kids are on casein-free diet, we need to ensure our Probiotics are also casein-free. Unless stated otherwise on the label, the probiotic would have been cultured on dairy, thus it is not GFCF compliant.

I also use high-potency Probiotics, the ones usually available in Malaysia are only 5 Billion CFUs per capsule, occasionally you can find 10 Billion CFUs. I usually give my girls 25-50 Billion CFUs of multi-strain probiotics daily. However for post-antibiotic treatment, I would give 100 Billion CFU daily for at least 2 weeks. Trusted brands like Klaire Labs, Kirkman’s, Custom Probiotics, New Beginnings and a few select others carry several different types of casein-free probiotic formulations ranging from 20 Billion CFU per capsule to even 100 Billion CFU per capsule.

Some parents look for liquid Probiotics, preferring the liquid forms over capsule forms. I don’t know of any liquid casein-free Probiotics so far nor where to find them. There are several pediatricians in KL who carry liquid Probiotics (cultured on dairy), so please check with your doctors or in certain major private hospitals. Personally I have never used them as I find that the CFUs are quite low. Secondly, I find that opening a capsule of probioitics and mixing it into water, juice, rice milk or any other type of liquid is very easy. Most Probiotics dissolve easily into liquid anyway, so to me the search for a liquid probiotic isn’t a priority.

Apart from the high potency and casein-free formulation of these expensive Probiotics,  one of the main reasons why I would only buy refrigerated Probiotics and never any stored on the normal shelves is that the live cultures are either half-dead or completely dead by the time we consume them. They’ve been sitting in hot warehouses and in store shelves for a few months before perhaps. So, check the manufacturing date of everything before we buy. Personally, I wouldn’t waste my money on unrefrigerated probiotics, regardless of what the charming sales person says.

You can purchase different brands of casein-free Probiotics online, most popularly from www.spectrumsupplements.com, www.iherb.com and www.b2bdiet.com.sg. Also, check on the KL Biomed forum regularly as many parents also buy extra whenever they purchase supplements. Many of our amazing super parents are kind enough to sell a bottle of their precious stock to another parent in need. All you need to do is ask. In Malaysia, you can find Klaire Labs Probiotics at Dr Eddie Chan’s clinic in Puchong. See here for his contact details http://mayaviktoria.blogspot.com/2010/05/dan-doctors-in-malaysia.html. In Singapore, Dr Erwin Kay www.kcsmed.org stocks Klaire Labs, Kirkmans, Culturelle and several other brands. In Jakarta, you can buy Kirkman’s and Klaire Labs probiotics from Kedai Radita, please contact them directly at bagina@cbn.net.id. In Bangkok please contact  TRIA Intergrative Wellness at http://www.triaintegrativewellness.com/  an affiliate of Piyavate Hospital. In Hong Kong, you can visit Little Giant www.littlegianthk.com.  Please refer to this previous posting on the many types of Probiotics available, though bear in mind that since then I have tried other different brands too as it is recommended to rotate our probiotics http://mayaviktoria.blogspot.com/2010/02/which-probiotic.html

When purchasing probiotics online or from overseas, the cost of shipping is a great concern. The cost of shipping Probiotics when buying online will vary according to weight, which courier company they use and volume of course.  For these packages, courier companies usually charge for a minimum of 0.5kg per package. So the cost of delivery for 1 bottle of probiotics is probably the same even when you include 5 other supplements included in that package. Probiotics must be shipped with ice packs and using the faster delivery option, usually 3 working days for good reason. With our tropical climate, many worry that by the time we receive the package, the probiotics would have been exposed to high heat and is no longer viable.

Wheee!!

These probiotics specialist companies usually provide higher amounts of CFUs than stated on the label, this is the contingency plan for shipping and handling. They guarantee the amount of potency as stated on the label upon arrival of the shipment within normal circumstances. Even if exposed to high heat during shipping, any deterioration is still acceptable because there’s leeway for it. So I would still accept the Probiotics as I assumed it came with an ice pack originally but then it has melted by the time it arrived to my doorstep.

I have ordered probiotics from the USA as well as Singapore, it takes 3-4 days from the US to reach me, and 1-2 days from Singapore. Ice packs are included upon shipping, however by the time the package arrives to me, the ice pack is usually melted and the probiotics aren’t cool anymore. To me, it’s still fresh and acceptable as it was probably only warm for 1.5 days judging on how fast the ice pack melted. However, if no ice pack was included, then please contact the shipper.

One of my shipments for S.Boulardii from a supplier accidentally did not contain any ice packs when they packaged it, when I contacted the company they apologized and gave me a discount. I was still happy with the products and I could still see that the antifungal properties were working on me and my girls. Leaving S.Boulardii unrefrigerated for 2 days  even in our weather is not a big deal.

Take note that Culturelle is usually shipped without ice packs. However the capsules are in special foils and the manufacturer guarantee freshness, though it is recommended to store it in the refrigerator upon receiving it. New Beginnings Probiotics are also shipped without ice pack, but also recommended to be stored in the fridge once received.

When I met the Klaire Labs guys in the US, they personally showed and explained to me a chart/graph and heat/temperature study of viability and potency of their probioitics. I explained about 3-4 day shipping and high heat and humidity to Malaysia, the study s
hows they guarantee the stated potency and showed how the potency decreases over time. They also ship to hot climates like Arizona, Hawaii and Middle East. If exposed to normal high heat of 30-35C for up to 2 weeks, they still guarantee the freshness and potency of the cfu stated on the label. It starts to decrease by 2-5% the next 2 weeks if exposed to high heat. But if continually exposed to high temp for 2 months, then efficacy decreases by at least 50%. I believe that these probiotics I order are from companies that have the highest standard in manufacturing and handling too.

Christmas Carols in Sydney

For many of us biomed parents, budget is always a concern. And we’re always trying to find ways to minimize cost. However, I highly recommend buying the best probiotics you can afford. I’d rather buy cheaper Vitamin C, but I would splurge on probiotics. Though at face value, locally found probiotics are cheaper by the bottle, imagine trying to do 50 Billion CFU per day on locally sourced probiotics. You’d end up swallowing 10 capsules a day. Cost wise, 1 bottle will only last you a few days. So, locally available probiotics may seem cheaper, but please consider the potency per capsule and calculate the dosage on how much is needed. You may think that the cost of specially imported Probiotics seems expensive, but in the long run, it may be more cost effective plus more effective treatment wise overall. And since many of our kids have issues with casein and dairy, there’s no point doing the casein-free diet but you still feed them probiotics cultured on dairy everyday, kinda defeats the purpose really.

A lovely friend SY has shared on how to do a viability test to check if your probiotics are still fresh and ‘live’. She recommends opening a capsule of probiotics and mixing it into a small amount of milk or rice milk. Place the container in a warm place and leave it for a while. If you find it turns solid, lumpy or custardy, then it means the good bacterias are still alive. Apparently this only works on probiotics that contains acidophilus or strep strains. So, get the best probiotics you can find. Don’t worry if the probiotics you received are warm upon delivery so long as there was an ice pack in it. And so long as it was by express courier. At the very least, you can always do the viability test. Who knows, it might taste yummy with a bit of honey, vanilla and fruit, yumm….. Happy 2011 everyone!

>Clostridia, Flagyl & Culturelle….

Clostridia are anaerobic bacteria which exists naturally in our gut. There are many species, some are not harmful though overgrowth of certain clostridia species has many negative impact on the human body. Clostridia overgrowth produces harmful byproducts, clostridia are also spore-formers. Due to several reasons, clostridia overgrowth is also common in certain children with Autism. Clostridia is not easy to test, it requires specialised labs with oxygen free environment to test for it. Our favourite CSA (Comprehensive Stool Test) by Doctor’s Data also tests for Clostridia. Both Maya and Yasmin’s stool test has confirmed clostridia infection at one time or the other. Depending on the severity from 1+ to 4+ (1 being the lowest, 4 being the highest) you can choose to treat it in different ways. An experienced GP or paediatrician can also diagnose it based on clinical symptoms and physical examination.  Depending on your doctor’s personal preferences and priorities with infections over other issues, the doctor may or may not choose to treat it.

However, for those who know me well, fighting infections are always a big priority for me. I am also blessed to have a doctor who supports me and shares the same goals and priorities. Namely because any type of infections has such a profound effect on my children’s behaviour. Apart from the health point of view, addressing yeast/ fungal infections, bacterial infections, clostridia, parasites and viral infections are high on my list for treating behavioral issues and developmental delays. Depending on the child, my girls have exhibited the following behaviors, all caused by either one of the infections- tantrums, aggression, meltdowns, crankiness, irritability, shouting, hyperactivity, non-compliance, echolalia, lack of focus and poor appetite to name just a few. Though there are many reasons for tantrums, meltdowns and all of the above behavior, when it is related to very high bacterial or clostridium infections, the tantrums and aggression are amped super-high. After some time, we knew whenever Yasmin had a bacterial infection. And we definitely knew when she had a clostridia infection- she would shout and her voice was always super loud. Even her normal speaking voice was like a megaphone. For Maya, clostridia causes aggressive behaviour, OCD, hyperness and rigidity.

Apart from the behavioral issues, infections also comes with other unpleasant physical symptoms such as diarhhia, constipation, bloating, foul smelling abnormal stool, tummy ache, night awakenings, poor appetite and many others. Not every child may present the same set of symptoms as my girls. Many parents tell me that though their CSA test result shows high bacterial, yeast or clostridia levels, they can’t distinguish or notice any behaviors or symptoms related to the infection. However, their child still exhibit many Autistic traits or behaviors. However, I hope that by treating the infections, it will lessen the Autistic symptoms.

Treating yeast, bacterial, clostridia, parasitic or viral infections does not necessarily mean treating Autism and it’s symptoms. However, you are treating and addressing your child’s health issues, it will enhance his quality of life. Our children  deserves good health just like any other child, Autism or not. Infections causes many pains and discomfort, addressing it will lessen your child’s pain and enable him to feel and think better.

Clostridia is commonly treated with Flagyl (metronidazole, the generic version is Norzol) an antibiotic specific for anaerobic bacterial infections. The course ranges from 3 days to 2 weeks, a main-stream doctor will usually prescribe 3 days of Flagyl, though a biomed doctor will prescribe 2 weeks for a child with ASD. Depending on the child, some children respond well to Flagyl, though some may not.

You can also treat clostridia with Culturelle. Culturelle is the brand name for Lacto GG, a strain of probiotics that are particularly effective against clostridia. It is said that Lacto GG is the most researched probiotic in the world. Best of all, Culturelle is also casein-free, compared to other brands of Lacto GG. Some children react better to Culturelle compared to Flagyl. Dr William Shaw, founder of Great Plains Lab, who is also a highly-respected biochemist in the biomed world, finds that Culturelle is more effective in addressing clostridia long term compared to Flagyl. He believes that treatment by Flagyl alone results in 100% recurrence in clostridium infection. However, by either using Culturelle alone or in combination reduces the recurrent infections tremendously. Reason being, clostridia is a spore-former, therefor Flagyl is not effective against the spores itself, only on the bacteria. The spores are the guys that reproduce and make more ‘baby clostridias’. Thus it would make sense to have a treatment protocol that address both the bacteria AND the spores. Please sign up to the Great Plains newsletter at www.greatplainslaboratory.com . You will also receive a free e-copy of Dr William Shaw’s book Biological Treatments for Autism & PDD, a staple in every biomed home.

Some children experience terrible die-off symptoms either from Flagyl or Culturelle or both. Some parents are happy to see bad die-off, thinking that it means it is killing the infection effectively. I would like to dispel that myth, some die-off can be expected. But really bad die-off is not good. It means that the body’s detox system is overloaded, that they are not able to detox or flush out the by-products effectively. At this point, please consult your doctor, you may need to reduce the dosage. On the other hand, no die-off or very mild die-off doesn’t necessarily mean that it is not working. Just count yourself lucky. Remember, if the child seems in a lot of pain, terrible discomfort, not able to sleep for many nights, really bad diarrhoea, continuously crying and mega tantrums, it is a sign to take it down a notch. Activated charcoal, Alka Seltzer Gold and Epsom Salts baths helps to reduce the die-off.

On the other hand, there are some parents who are so fearful of possibly bad die-off, that they prefer to not address the infections. Fungal / yeast, bacterial and parasitic infections causes terrible itch, pain and discomfort in the tummy, bowels, skin, genitals and anus. Please, don’t be put off by the die-off horror stories. If you yourself have ever had a yeast infection, you know how horrific it is to live even 1 day with the itchy scratchy pain in your nether regions, so imagine if it is a systemic yeast infection in your child, imagine the pain and discomfort he is experiencing. If you fear the die-off, consider that the treatment is only for a couple of week, after which you child will be left feeling a whole load better, pain free and itch free. 2 weeks of tantrums and sleepless nights compared to a life-time of happiness. Don’t let your own fear hold your child back. Don’t let your own fear of sleepless nights or dealing with tantrums deny your child the medical attention he needs. If you do decide to take the plunge, and if the die-off is too unbearable, remember that you always have a choice to reduce the dosage or stop it altogether. Having activated charcoal on hand helps. A
t the very least, you can tell yourself that you tried your best for your child.

For my girls, I have tried Flagyl and Culturelle, both singularly or in combination. We have done Flagyl for 2 weeks, then followed by Culturelle at a maintenance dose. I have also done only Culturelle at a therapeutic dose for 3 weeks, then reduced to a maintenance dose. Both have been effective for us, the incidents of recurrence have been manageable provided that we always include a maintenance dose of Culturelle daily. There was a time 2 months after Yasmin’s last Clostridium infection which we treated with Flagyl followed by Culturelle, we ran out of Culturelle. After 3 days of missing it, all the symptoms came back with a vengeance. The shouting and tantrums, poor appetite, night awakenings and severely bloated tummy points to clostridia again. Based on our doctor’s advice, we put her on a therapeutic dose of Culturelle. It did the trick, after the first week, we could see a reduction in the behaviours and physical symptoms. Since then on, I made sure we never ever ran out of Culturelle again.

There were times that therapeutic dosage of Culturelle was not enough and we had to resort to the Flagyl/ Culturelle combo again. But for us, maintenance is the key. Without daily dosing of Lacto GG, the highly opportunistic clostridium WILL come back. Also, we made sure that the girls get high doses of multi-flora probiotics post antibiotic treatment. My current favourite probiotics are Custom Probiotics CP-1. It is 50 Billion CFU, it is casein-free and strep-free multi-flora combination of Lacto and Bifido strains. I also supplement with S.Boulardii as it is also helpful with the fight against dysbiotic flora. If you have a child who is prone to recurrent infections like I do, addressing the immune system imbalance concurrently is a must.

Flagyl is a prescription antibiotic, you can get it from your prescribing doctor. Culturelle comes in 1 Billion or 10 Billion CFU, I always make sure I get the 10 Billion CFU ones. Culturelle is usually stored and shipped unrefrigerated, it comes in specialized foil packaging that protects it during transport. However, it is always recommended to store all probiotics including Lacto GG in the refrigerator once you receive your shipment to ensure potency. Culturelle is available at www.iherb.com, www.spectrumsupplements.com, www.b2bdiet.com.sg and autismrecovery.com.sg.  You can purchase Custom Probiotics at www.customprobiotics.com. All the above stores delivers to Malaysia.

A friend reported that her child was diagnosed with anaerobic bacterial infection by her peadiatrician. Based on clinical symptoms and physical examination, he prescribed a 3 day course of Flagyl. I spoke to her about Culturelle and once the course of Flagyl was finished, she put her child on a therapeutic dose of Culturelle. Funnily enough, the 3 day course of Flagyl didn’t seem to cause any die-off nor improvements in her child. However, on the 2nd day she was on Culturelle, her daughter experienced die-off behaviours- irritability, crankiness, fatigue, non-compliance and poor appetite. Take note that this is a neuro-typical child with absolutely no Autistic symptoms.

Finally, her daughter did a massive bowel movement. My friend couldn’t believe how much came out of her child, to the point that she insisted that her husband and the maid look at it. They feared the toilet bowl was going to overflow, gross yet fascinating, they couldn’t look away. She was so concerned for her child, yet the texture and appearance of the stool was normal, the only abnormal thing about it was the amount. It seemed more than even an adult could produce, much less a skinny 5 year old child. However, right afterwards, her child said to her that she felt much better. She then was ready to eat and had a healthy appetite again. It is amazing how quickly a child bounces back. Since then on, she is a big believer in Culturelle. This is a gross story, but something only a biomed parent can appreciate. In fact, when my friend called me about it, she was so amazed by what happened on that day and she knew that I was the only person who would appreciate such a story. And yes, I did.

>Which Probiotic?

>

When choosing a broad-spectrum probiotics, it is best to get one with multi-flora rather than single strain. The refrigerated kind are recommended rather than on the shelf. However, even if you do purchase unrefrigerated ones, do store it in the fridge at home to maintain freshness and potency of the live cultures. As most ASD kids are on the GFCF diet, make sure that your probiotic is a casein-free source. Most probiotics are cultured on dairy unless stated otherwise. Specialist GFCF probiotics do cost more however it is worth spending extra money on a quality probiotic.

The usage of probiotics in biomedical intervention Autism Spectrum Disorder is one of the first few supplements to start your child on. The benefits are too many to write here, please see Dr Kurt Woeller’s blog on the benefits of probiotics here http://drkurtwoeller.blogspot.com/2009/06/probiotics-growth-promoting-factors.html


Here are some of the probiotics that I have tried;

1. ProBio Gold 20 Billion CFU multi- we initially used this, it made a great difference because my girls were really low on beneficial bacteria. But after extended use, it doesn’t seem to be as effective and cause constipation for my girls. Contains 4 types of Lacto, 1 type of Bifido and 750 million CFU strep


2. Klaire Labs Therbiotic Complete 25 Billion CFU- contains more strep than Probio Gold but seems to be better tolerated mainly because it has more Bifido strains (Probio Gold only has 1 bifido type) Contains 7 Lacto strains, 4 Bifido strains and 1 Billion CFU strep.

3. Klaire Labs Therbiotic Detoxification Support 50 Billion CFU – high potency probiotic (not broad spectrum) specific for detox support. Has 2 types of lacto and 1 Bifido.

4. Klaire Labs Therbiotic Factor 4 10 Billion CFU- contains only Bifido (4 types). As an add on formula for those who require extra bifido especially helps with constipation.

5. New Beginnings Probiotic Support Formula 20 Billion CFU – multi-strain probiotic with added S.Boulardii. No strep included, contains 4 Lacto strains and 2 Bifido strains and 2 Billion CFU S. Boulardii. It ships out from manufacturer without refrigeration, however recommended to store in the fridge. GFCF compliant.

6. Three Lac – this is a proprietary blend of probiotics and other ingredients, usually used as a natural treatment for anti-fungals. However, it did not have much effect on my girls.

7. Culturelle – contains Lacto GG, good to kill clostridia in most kids. It is very effective in keeping clostridia from recurring. Though it contains very minute amounts of casein, it is generally beneficial to most kids.

8. Sacchromyces Boulardii – it’s a probiotic type of good yeast, that fights the bad yeast.

9. Klaire Labs Biotagen- this is a prebiotic, it encourages implantation of good probiotic as well as natural regrowth. Some children may not be able to tolerate this formulation due to it’s effect in raising sulfur levels, this is child specific.

All of the probiotics have been helpful and effective in some manner with my girls. There is no real favorites here as rotating it seems to work best for my girls. Currently we just started using New Beginning’s Probiotic, there doesn’t seem to be any amazing improvements, but neither is there a bad reaction. Most kids are ok with strep strains in the probiotic blend, however this is child-specific. For my girls, it seems that continued use of Probio Gold and Therbiotic Complete has built-up the strep levels to the point where it affected them, usually tummy ache, constipation, irritability etc. The strep strain here is Streptococcus Thermophilus which is actually a good probiotic, but some children may not be able to tolerate prolonged dosages of it. When first starting biomed without a DAN doctor, you can choose Probio Gold as it is GFCF, has a good range of probiotic strains, it is high potency and it is easily accessible from our specialist retailers in Jakarta and Singapore or to purchase online. 20-25 Billion CFU is a good amount for ASD kids. However, if your DAN Doctor carries a range of Klaire Labs products, then I would recommend Klaire Labs Therbiotic Complete. Klaire Labs products can only be ordered by a doctor, if your DAN doctor does not carry this or if you do not have a DAN doctor, you can try to persuade a local doctor to help you order this from http://www.klairelabs.com directly. However, if you suspect that strep might be an issue, then please find alternative types.

It is recommended to rotate probiotics, by rotating I mean finishing 1 bottle, and for the next bottle to purchase a different type. Not rotate on a daily basis. I would not recommend New Beginnings Probiotic for beginners to biomed as your child may probably not be ready for anti-fungals just yet. However, once you are ready for anti-fungal treatment, then you may try this. Again, this is dependant on whether your child can tolerate S.Boulardii. For higher potency probiotics – VSL#3 is a very high potency multi-flora formulation usually to treat severe gut issues such as ulcerative colitis and Crohn’s disease. It is also beneficial for those diagnosed with Inflammatory Bowel Disease and with high oxalates. Please use this under the supervision of a medical doctor.

There are other probiotic in the market, do not limit yourself only to my list. There is no perfect probiotic that I’ve found (so far) it’s best to rotate and observe which ones is more suitable for your child. Probiotics is high on my list of essential supplements for both my girls.