>What To Expect During Your First Biomed Consult

>As part of our Autism journey, we have met many people especially in the medical and special education field. Some have been incredibly helpful, many were not. And because Autism is such a complex disorder, we often have to resort to second opinions. So, like most Autism parents here, we have had many many consults with doctors and other professionals. Preparing for a 1st consult is important, not only do we sit together to discuss our child, we are also trying to size up the person sitting across from you, whether this is the right person to guide you in the journey towards recovering your child. 

Apart from medical degrees and other professional diplomas, we also base it on their bedside manner, how they treat our child and us, whether they are respectful or condescending, if they have the right attitude, whether they think they know best and disregard the parents’ opinions. Most of the time, the professional that listens to the parents are usually the best for us. A plethora of degrees and certifications doesn’t impress us as much as willingness to listen and learn, being open minded and considerate. They don’t have to be my best friend, but they have to be willing to work together with me. I don’t want someone to steamroll and override me, neither do I want someone who will blindly follow my wishes and not contribute to the occasion. Though we are not medical experts, we are the experts where our children are concerned. We know our child best and a good doctor will listen and take into account your opinions and your views. 

For some reason, we have consulted with a total of 6 biomed doctors in the 2 years since we implemented an intensive biomedical treatment for our 2 girls. Not to mention countless other professionals including mainstream medical doctors, naturopaths, homeopaths, psychiatrists and psychologists, behavioral specialist and special educators.

When seeing a new Biomed doctor for the 1st consult, I would prepare the following to ensure that we get the most out of the time provided. Most consults are 1 hour though some doctors require even up to 1.5 hour to 2 hours for the first consult. Though some parents initially balk at the seemingly long time for a consult, I usually find that it’s never enough. Most parents are used to very quick doctor’s visits, ranging from 5-15 minutes. Usually, the wait in the waiting room is usually 5 times longer than the actual consult! The irony is, when observing other patients in a pediatrician’s waiting room, the parents and child gets swished in and out within 10 minutes with either vaccination shot or antibiotics. Whereas if we come in and mention that we would like to put my child on the GFCF diet or do a simple fungal infection test, we get lectured by the doctor for an entire hour!

For the first consult, you must bring your child along. It usually involves a thorough discussion of the patient and family history. His symptoms and behaviors, medical history such as vaccinations, diseases, chronic medical issues and any hospitalizations. The doctor will also ask you about the pregnancy and birth. I advise you to bring all medical and psychological tests done just in case the doctor might find it useful. During the first consult, the doctor also conducts clinical/physical examination, what they look for depends on what issues are suspected during the course of the discussion. Time is also required to obtain test samples, discussing treatment options, how to prioritize treatments, regarding supplements dosages and how to go forward.

Some parents prefer to let the doctor lead the session, satisfied to answer any question posed to them. Other parents come armed with a long list of their own questions to ask the doctor. Though it may seem that the 1 hour consult is a long time, we need to use the time wisely. I suggest you do some reading up beforehand so that we don’t waste the time with simple questions such as “What is Gluten? What is Casein? Can my child eat this or that?” Also, reconsider some of the questions you may have, think whether the foreign doctor would really know much about certain obscure traditional herbs or whether a certain local dish is suitable for your child.   

Do prepare a list of questions beforehand in case you forget. Communicate to the doctor your priorities, for us it was sleep and constipation, for others it was speech, for some it was aggressive behavior. Don’t forget to bring pen and notebook or, as I do, my trusty iPad to jot down my notes. During consults when my husband is not able to attend, I can easily email the notes to him. I frequently refer back to these notes later on.  

The clinic will probably provide an ice pack for chilled supplements if any. But if you are not going straight back to your hotel room afterwards, or you are facing a long drive back to your home or you are flying back, I suggest bringing an insulated bag for the chilled supplements just in case of delays.

Some parents buy more than 20 supplements (which I do not recommend) thinking that they can save on a trip and delay the next consult, but in the end, the plan usually backfires. Some parents insists on getting more supplements from the doctor, thinking more is better. For me, I prefer to buy only enough supplements that I think I can safely introduce or implement within the time frame before the next consult. On average, 6-7 supplements for the first consult is a comfortable figure for me, however this is highly subjective. Some doctors do not supply any supplements at all, some parents prefer not to buy from the doctor.   

Remember, please introduce each supplement slowly, keep track with a daily log, in case of side effects or unsuitability, you can quickly identify which supplements caused it. When first starting with Biomed, go cautious. We cannot predict which supplements will backfire on a child, some kids have trouble even on vitamin C, cod liver oil or probiotics, these are all basic supplements. Starting at half or even a quarter dose, I would slowly increase the amount every 3 days. However, some parents prefer to give all at once and later should any unbearable side-effects occur, they will deal with it when and if it comes. It is up to you how you wish to introduce new supplements. However, when it comes to medications eg pharmaceutical non-natutral antifungals, antibiotics, antimicrobial or antivirals, then it’s recommended to straightaway go to the full dosage.

Please check beforehand if the doctor accepts credit card payment or only cash. The consult is generally 1 hour, but check beforehand how long is the first consult going to be. I would add an additional 20-30 minutes to collect test samples if required as well as checking the supplements given and verifying the price or dosage. I suggest bringing toys, game consoles, drinks and snacks or even portable DVD players to occupy your child during the consult as well as during the trip.

Typically, the doctor would recommend several tests. However, this is not a definitive list as each child is unique, thus tests would depend on the child’s unique issues. If cost is an issue, you can ask the doctor on staggering the tests perhaps, prioritizing the ones recommended to do first etc. Also, different doctors have different preferences on what tests are required. These are the list of the common 4 tests required; however some doctors may request for additional tests depending on the child’s needs;

Basic 4 tests-  
1. IgG Food Intolerance Test- this is a bloodspot, requires a prick on the finger
2. Comprehensive Stool Analysis- stool sample.  
3. Organic Acid Test- commonly referred to as OATS test, need first morning urine sample 
4. Hair Analysis- hair cut from the roots, minimum 1 inch long

Additional tests depending on child and doctor’s practice-
1. Urine Prophyrin- urine sample, do not expose to light
2. Blood tests – Complete Blood Count, Kidney & liver function, IgE etc.

There are ot
her tests required, but generally these are usually done at a much later stage when you are ready to implement Tier 2 and Tier 3 protocols.   

Some kids are not toilet trained or non-compliant. Some kids can’t urinate or poo poo on demand so I suggest you bring urine and stool samples with you. Please collect the samples at home, bring 2 x urine, 1 x stool. Bring 1 urine sample for OATS from first morning void, if it’s too diluted it may be rejected. In separate container 1 urine taken in the dark, anytime is fine. Cover this container in foil, do not expose to light in case you need to do urine prophyrin test. For stool test sample, you must stop antibiotics, probiotics, antifungal, digestive enzyme 1 week prior. If  there’s not enough time, inform the doctor and bring the complete test kit home and send it to the lab directly from home. Make sure samples are not contaminated eg stool in urine. Please fill all containers till full just in case. 

Samples must not be more than 3 days old. Place in sterile containers (get from local clinic or labs) and keep in the fridge. Transport it in insulated bag with ice pack. Otherwise, get the complete test kit from the clinic, fill it up at home and courier to the labs directly. If so, you must explain to the nurse you are sending it yourself to USA from Malaysia or your country. Otherwise they won’t give you the complete test kit which also includes the customs declaration form. The Hair Analysis requires hair to be 1 inch long minimum. Please wash hair the day before with organic shampoo, as you don’t want the hair to be contaminated from chemicals, thus skewing the results. The blood draw may be required in some cases eg the doctor will advise to do kidney and liver profile test for kids with suspected liver damage. 

If your child is not already on the GFCF diet, be prepared to do so as the doctor will definitely ask you to start it asap. Most doctors also recommend to go soy-free and egg-free too, even before the test results come out. In fact, you can start it now. Discuss with your doctor how often you are expected to consult and if you need to bring your child to each consultation. Some doctors prefer to see you every month, some prefer every 2 months. Commit to seeing the doctor regularly for consults, include the trip expenses into your budget. By showing your commitment to the doctor and to his protocol, the doctor too will in turn show you his commitment, often trying harder and harder for your child. I strongly suggest getting a 2nd opinion at least once a year. However, it is too soon to decide to change to a new doctor after just 1 consult. Usually, I suggest 2-3 months to see whether his protocol is suited with your child before you decide to change doctors, unless of course you have very strong reasons to dislike him or her.  

I hope this helps in preparation to seeing a Biomed doctor for the first time. The information above is mostly relevant to the current Biomed practice in Malaysia, Singapore and Indonesia. The first consult is usually the most stressful I find. Even after doing many consults, I still need time to prepare before each and every consult, wanting to make the most of my face to face time with the doctor. I have learnt from each and every biomed doctor I consulted with. I wish you and your child all the best and hope that you find the consult fruitful.

>All About Yasmin

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My second daughter Yasmin is 2y5m, she was a happy easy-going baby, she fed well, slept through the night and pretty much a normal child. Her language and cognition is very good and she’s very affectionate. However, for the past 6 months we have noticed a gradual change in her behavior, she is often cranky, shows rigidity in behavior, uncontrollable at times and rarely smiles. Also, she started to have sleep problems, is now a very fussy and picky eater, chronic constipation and shows a lot of abdominal pain. We also noticed some stims such as tip toe walking, slight repetition in language and motion, always tapping and knocking on walls or furniture, she is always climbing on the arms of the sofa, straddling it while rocking her body and grinding her pelvis against it and we have noticed some eye stims recently.

However, throughout all this, her language and cognition has always been very good. But Paul also pointed out that we have not seen any developmental gains in the past few months, she is still at the same developmental level as she was 6 months ago. Because of what we went through with Maya, we also understand the genetic susceptibility of siblings getting the same condition. So we took steps to reduce the possibility of it; we put Yasmin on the GFCF diet for the past 9 months, she is also soy-free and egg-free. Her diet is organic and pretty much the same as it is for Maya. We did not give her the MMR however she did receive some vaccinations prior to it.
In January 2009, both girls were hospitalized for Rotavirus. Both Dr Erwin Kay and Dr Rina Adeline suspect that her regression was induced by the infectious and bacterial disease. There are many causes of Autism, we now believe that the Rotavirus tipped her over the edge. I also believe there she also contracted other countless bacterial and viral co-infections that were never tested, identified or treated for. We were on holiday in Phuket and Paul took the girls to play under the water sprinklers in the hotel garden. I kept asking them to stop because the water smelled putrid, plus the Thai gardeners kept shouting and gesturing at them to get away from the garden. We later found out that the filtration system is broken and water contaminated from the septic tank was used. Yeah, dumb but true. 2 days after we came back from Phuket, first Yasmin and then Maya was hospitalized. They were treated for Rotavirus, but it’s interesting to note that they were not tested for other types of infections or viruses, the doctor only tested for Rotavirus.
We did the IgG Food Intolerance test and the Comprehensive Stool Analysis. Her IgG levels are elevated with multiple food intolerance, she also has leaky gut, there are multiple bacterial infections, yeast overgrowth, digestive enzyme deficiencies, gut inflammation, oxidative stress and others. Her medical prognosis is chillingly similar to her sister’s, in fact some of her test results are worse than Maya’s.
Both DAN doctors confirmed that Yasmin is either borderline ASD or gradually declining towards the Autism Spectrum. We don’t know whether it will be Autism, ADHD or Aspergers, but I’m not waiting to find out. We are doing all we can to stop it now, starting with her gut issues. We have not done a psychological assessment, mostly because of time and financial constraints, but also we do not need a clinical psychologist to tell us what we already know. Also, some people including doctors are very quick to judge us as overly-worried parents because Yasmin’s language skills are amazing. And it’s unfair that because for the 5 minutes someone observes her, they come to the conclusion that she’s fine. As if that can be construed as a `qualified diagnosis’.
Yeah, but did they ever consider that during that 5 minutes, she is so engrossed with a new toy, chatting happily away, laughing and everyone is giving in to all her demands that she is not likely to throw a tantrum? No one else would know that it takes us such a long time to calm her down or redirect her when she’s in one of her tantrums and rages? No one else has to get her to stop humping the furniture, if they did then they’ll know that this is not `normal’ behavior. No one outside the family has ever experienced a night when she wakes up at 3am and wants to play for 3 hours. It’s come to point now that sadly, our officially-diagnosed ASD child Maya is so much easier and better behaved than Yasmin.
As parents, we shouldn’t let ourselves be blinded by Yasmin’s cleverness and precociousness. I could never avoid noticing some of her abdominal pain behaviors, she would insist on me holding her tummy, she would lean over tables and bed corners, pushing her tummy into it. I can’t help but notice that she is constipated for 5 days, her stools are always either very hard and pebbly or runny and soft. Her tummy is distended and she is extra irritable and cranky during constipation days. Her constant knocking and tapping is a sensory issue and also signs of calcium deficiency. Yes, a lot of her behaviors are considered normal 2 year old behaviors, but all together at once and there’s a sibling with ASD? Come on, I’m an Autism Warrior Worrier Mummy, you can’t fool me!

>A TEST of Patience

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As Autism parents, we are subjected to numerous tests and evaluations from doctors, child psychiatrists and clinical psychologists. And these tests are just to confirm that yes, your child has Autism. What next? Therapy and more therapy.

Now that we know there are biomedical interventions that can help our children recover and we’ve done the basic steps that I’ve listed in the previous blog, and you’ve done your research, you find out there are MORE tests to be done, sigh……. So, what are these tests we need to do? Where can we do them? How much does it cost?
1. IgG Food Allergy – This is to test for delayed immune response and for food intolerances. Unlike the IgE, which is the most commonly used food allergy testing, IgE tests for immediate immune response such as common allergic reactions to peanuts and seafood. Going back to IgG, this is the test where you’ll discover intolerances to gluten & casein and others too.
In Malaysia, to do the IgG test requires drawing of blood up to 1 – 2 liters sometimes. It’s extremely traumatic for any parent and child to go through this, it took 6 people including me to hold Maya down when we did this previously. (Ironically, those tests were inconclusive and it was a complete waste of time, money and unnecessary trauma) Dr Erwin Kay has specially ordered test kits from a trusted lab (www.usbiotekcom) that only require a bloodspot – where the doctor only pricks the end of the little finger, and rubs the drops of blood onto a test pad. Maya barely even noticed it.
We did the IgG Asian Food Panel for 96 food items by US Biotek. Cost – SGD$460.00 / RM1,110.00. If you choose to do it in Malaysia, most hospitals and labs would charge RM50-70 per food item. You’d usually have to test >30 food items. A parent told me she was quoted RM300 for ONE food item! These cost do not include the consultation, lab services and other items for such procedures.
2. Comprehensive Stool Analysis – This is to test for bacteria, good and bad flora levels, fungal and yeast overgrowth, immunology, digestion, for any inflammation and fatty acids levels. You MAY be able to persuade your local doctor to do a stool test for fungal and yeast, though it would not give you a comprehensive look at your child’s digestive system and other metabolic markers. Our test from Doctor’s Data (www.doctorsdata.com). Cost – SGD$540 / RM1,300.00
3. Urine Organic Acid Test – This is to test for nutrient levels, vitamin markers, cell regulation, detoxification markers and others. We did the testing by Metametrics (www.metametrics.com) and we found Maya had amino acid insufficiencies, oxidative damage, lethargy, impaired detoxification, yeast infection and others. Cost – SGD$850.00 / RM2,060.00
4. Heavy Metals testing – you either do hair analysis or a DMSA challenge test (urine). This is to test for mercury, lead, aluminum and other toxic heavy metals. We did a hair test with Dr Sundardas in Singapore (www.naturaltherapies.com) by the lab Trace Elements, Inc. Cost – RM425.00.
Where can we do these in Malaysia? Through reports from other parents and my own experiences we find that when we go to the GP or pediatrician, (our collective experience with numerous doctors in numerous hospitals) we encounter a lot of negative responses such as `you’re over-concerned’, “these are unnecessary” or “you’re over-testing”. We parents know that our children have health issues and in order to get the appropriate treatments, we need data from these tests. I would recommend to go directly to a DAN! doctor either in Singapore or Indonesia. Otherwise, expect a battle of words with your doctor and expect to go home totally infuriated & frustrated.
While waiting to see a pediatrician recently, I noticed that it takes less than 10 minutes for a doctor to diagnose a patient and send them home with antibiotics, whilst it took Paul and I a full 1 hour to beg, plead and convince the doctor to do these tests. The `wait and see’ approach should not be applied to any child who’s suffering from chronic constipation, diarrhea, chronically ill from fever, colds and flu, or exhibiting self-injurious behaviour such as head banging, because we the parents know that our kids are in pain, all the time.
These are the basic tests that you usually do, depending on your budget, talk to the doctor whether you can do this all at once or if you wish to stagger it. You may have to do more testings, but that would probably come at least 1 year later, after you’ve addressed all the issues found from the first tests. Good luck & share your experiences with me and others. There’s a lot of rainbows in the sky, if only we keep looking for it.