His first four

We started Jaden on his supplements given by Dr Erwin right after he recovered from his fever. We were given these four supplements to start off with, which is actually recommended to start off with a few supplements before slowly going full-fledged so we will know which supplement Jaden might be allergic to. 

The first supplement we gave was the cod liver oil. Cod liver oil is actually good for everybody. It is just that some out there on the market, might have used some fish that might have some mercury in them and this is a big no no for children like Jaden. We are trying to eliminate all sorts of metal from his life, in order to do so, we have to choose only the best cod liver oil claimed to be sourced from fishes that are at their minimal exposure to such poisonous components. Dr Erwin gave us the Möller's Tran Cod Liver Oil. 

So far, well, my journey in trying to feed him the cod liver oil has been going quite smoothly with a few bumps on the road after I took heed of Chris's advice by putting bits of fruits on top of the spoon and quickly letting him gulp down before he realizes anything but now, I guessed he figured out my trick and sometimes will just clamp his mouth shut so tight, it really needs a few minutes of coaxing, some smelly fishy oily drips on the floor before I can get him to gulp it all down. *sigh* This poster here really depicts the situation well. 

 

Translation: “Not the easiest thing to give, but the best thing to get”.

Picture by the awesomely talented Jill Greenberg.

Next, I started giving him the Digestive Enzymes. So what does Digestive Enzymes do? Digestive enzymes are complex proteins that aid the digestive system by carrying out chemical changes in the food ingested. Digestive enzymes need specific pH and temperature to become chemically active. The Digestive Enzymes that Jaden is consuming at the moment is the Houston Peptizyde Multiple Protease (90 capsules), 3 times a day before food. 

 

So every morning when he wakes up, there will be juice ready for me to open a capsule to mix it into the juice. Mind you, juice meaning three-four straw sips of juice only, enough just to get the whole capsule into his tummy. On days I think I might get lucky, I cut the fruit, dig a hole in the middle just nice enough to fit the whole powder from the capsule in and let him eat it all. Of course he will spit it out but I make sure he eats everything he spits out until he is done with that small tiny bite size of fruit. At the moment, the instructions given by Dr Erwin is to give him 3 times a day but I can also gradually increase it to 5 times a day. Its just that trying to feed him 3 times a day is already a struggle, 5 times??? Well, if that is what it takes to get him recovered, I will do it...

Of course, whatever we eat or do will have side effects. If not, there won't be the cause and effect theory right? Well, there are side effects to taking Digestive Enzymes too. There are certain digestive enzymes side effects that may be experienced by the user. The digestive enzyme side effects may be seen for a few days after you begin to take them. It is just the body's way of adjusting to the dose of enzymes. The digestive enzyme side effects that are commonly seen are as follows: 

Diarrhea / Constipation / Stomachache / Nausea / Bloating / Gas / Loss of Appetite / Headache / Fatigue / Dizziness

So far, I think the only side effect I see is that Jaden has been burping quite a lot, a little tummy bloatness and thats about it. Maybe sometimes in a day, he poops 3 times a day, 2 times will look kinda diarrhea-like, soft and mustardy yellowish colour but then again, that might also be due to the side effects of the probiotics, which i am writing about below.

The rule says to feed this before meal too, but other parents have told me that the digestive enzymes would digest the probiotics and then, it defeats the purpose of giving him the good bacteria so I feed this two hours after his meal. This too, I mix into the juice and let him sip it all up. I am getting really good at twisting and opening up the capsules now. He only eats 2 capsules a day because too much probiotics might also cause underlying medical issues. He takes the Klaire Lab Ther-Biotic Detoxification Support probiotics.

In rare cases, they may lead to mild digestive problems like flatulence, bloating, diarrhea and abdominal pain. If probiotics are taken in excess amount, there are chances of developing infections that require medical attentions. 

In case of people having an underlying disease or a compromised  immune system,  probiotics can cause potential health problems. In fact, these individuals are at a higher risk of developing infection after the use of probiotics. Symptoms such as bloody stools, skin rash and fever are indications of intestinal infection. 

In addition, probiotics may disturb the normal metabolic processes and autoimmune responses of the body. According to medical studies conducted, there is a possibility that probiotics may interact with immunosuppressive drugs, leading to life-threatening conditions. Hence, those who are on immunosuppressive medications should strictly avoid probiotics. 

Sends shiver down your spine, don't they? 

  

Last but not least, for now, this is something he drinks without pushing me away. I mixed 1/4 teaspoon of Awakening Spectrum powder by Metabolic Maintenance into his juice and just mix it till it blends. Supposedly it has no taste or smell, so the boy just laps it up like how he would drink water. Awakening Spectrum is actually multivitamins.This, I have to feed him 3 times a day after meal.

This specialty formulation contains the nine most commonly prescribed amino acids and vitamin/minerals for autism. They synergistically act as a GABA agonist; symptoms associated with hyperactivity of the nervous system, including hypersensitivities, delayed speech, anxiety, and insomnia may be corrected by the increased production of GABA, serotonin and melatonin. The amino acid combination of 5-HTP, Theanine, Taurine, and Lysine, in conjunction with P5P, Methylcobalamin, and Magnesium, may help slow down an overactive nervous system.

So there, these are currently what I am feeding Jaden at the moment. I guess, we have to wait till my next round to Dr Erwin to see if Jaden needs to add on more. You know, some children consumes more than 20 different types of supplements daily? some Vitamin B12 daily injection shots too... I am so not looking forward to that just yet... and there are some things I am still considering on giving Jaden because once you start on these meds, you don't stop. You go all the way if you want to see improvement.

Quoting from one mother I talked to, "its just like cancer patients. If they say you need to do 10 chemotherapy to see results, and you only do 5 and then you bitch about not seeing results. Whose at fault right? So its the same with biomeds, or the hours to put in for therapy sessions".

And yes, the therapy sessions is what I am going to blog in my next entry.

In conclusion, did Mr and I see any results / improvement in Jaden's journey at the moment. Well, since we got him on a strict GFCF diet, he seemed to look at people more and a little more aware of what is going on. Eye contact is still fleeting but at least he do pause a while to look at you in the eye before doing his thing again. Slowly but surely ... that shall be my motto!

IgG test results

Jaden's IgG test results came back to us this morning.

As suspected, he is highly allergic to Casein, milk, whey, yogurt (bovine-derived), gluten, wheat, chicken eggs.

Moderately allergic to oysters so that is also out of the menu.

Then next comes, coconut, grapefruit, orange, almond, soy bean, sea perch, mustard and of all things, white rice. Dang!

Things to look out for will also be chicken, garlic, tuna and vanilla beans.

So all those mentioned in the first line would definitely be out of his menu while those on the second, can be taken occasionally but if his condition does not show improvement or *touch wood* shows regression, then we have to strike it off the menu too.

We have started giving him his cod liver oil and lets just say, it has never been a pleasant experience giving it to him. 5ml in a syringe, and holding a very strong boy down just don't work when the liquid inside the syringe ain't something that he likes to eat or will willingly down without a fight. Oh yes, he sure is a fighter! Lets just say all three of us smells like a fish after. Very smelly fishes!

Today should be our fourth day on the cod liver oil. I am still trying to look out for his body reactions to the cod liver oil. So far so good so next, would probably be the digestive enzymes. Then give him another 4-5 days to check for body reactions and then the probiotics. 

Jaden had fever since last Tuesday, got better the next day but still going warm and then back to nornal and suddenly he was back burning up on Saturday night. I had to give him a suppository to kill the fever off, which it did. *phew* Now, what is left is the annoying cough, phlegm and runny nose.

It was our first time to the paed this year I think because when his paed checked Jaden's last record, it was last year September or something like that. He asked us how was Jaden's speech coming along when we told him that Jaden is actually diagnosed with ASD and the paed looked at me in bewilderment. ASD? Heart problem? Oh gawd! I quickly corrected him and said it was ASD for Autism Spectrum Disorder instead. I later found out what the other ASD meant -Atrial Septal Defect.

Well, Jaden being sick gave him all green light to ber-maharajalela in the house and I think he thinks it is his rights to act this way even when he has recovered. One week of bad behavior was getting on my nerves so today I showed him the cane when he was being cranky and tried to kick me. I only showed him, not give him... next round probably. 

He was never really difficult for quite some time now and now, I am not very sure if its the fever talking or the die-off reaction from his casein and gluten withdrawal? So all I am doing now is monioring, logging each day's behavior, his food intake and well, the cane from time to time to remind him that I am still boss afterall in this house.

Drama queen

Jaden and I were doing our usual grocery shopping at Jusco after his Fun & Movement class on Saturday when an incident happened that pissed the crap out of me.

Jaden strapped in his stroller, was just being himself. Wanting to touch every packet he sees, trying to grab hold of the apples in the fruit section, sometimes holding on to someone's basket as they pass by just because they were in his way. All he wanted was his path to be clear so that he can see me.

Then this one lady happened to stop right next to his stroller, holding a paperbag. I was busy trying to read labels on the tofu for no preservatives when suddenly I caught Jaden reaching out to want to pull the paperbag, pushing the lady out of his way. It was just in a split second when I quickly tore his hands away from the paperbag, which he managed to beat me to it but it was only happened like half a second. No damage or whatsoever done, like a torn paperbag. I was apologising sorry, sorry, sorry when suddenly I regretted apologising all at once.

This lady, in her 30s, gave him such a dirty stare and the loudest "HAIYOOOOOOOOOOOOOOO!" at Jaden. Luckily, Jaden in his case, was not affected by this Haiyo nonsense and the cock stare she gave my son. He was, in fact giving her the friendly smile and not the naughty so what smile at her. I mean the way she reacted to it was as if Jaden torn her dress or stabbed her with something. That was how dramatic she was. 

So why the fuss about Jaden pulling her paperbag for awhile. My oh my, because... jeng jeng jeng... are you ready to hear it?

BECAUSE... it was a LANEIGE paperbag.

Know what Laneige is? It is a skincare brand and what the heck? Raising your voice at the child because of the paperbag. As if lah, it would mean status to you if people see you walking around with that paperbag in hand. 

I stopped apologizing that very moment. I did not even attempt to want to push Jaden out of her way. You can go look at the tofu from far for all I care. I will move away once I am done since you are the one being so rude in the first place.

She can go and apply whatever she wants on her face but with that attitude, I am sorry, you just will not be beautiful at all because you rot inside out.

My son was wrong in the first place to even attempt to touch the paperbag but I did apologize sincerely. Not as if I let him do it and just leave him be. So I am definitely feeling not sorry at all now that Jaden did it because it just helped proved what a person you are.

Singapore #1

The whole clan made a short trip to Singapore last Monday for our Tuesday early morning 9am appointment with Dr Erwin Kay. It was good that it was a short trip because the 2.4 conversion rate sure was a pain in the ass.

We stayed at Joo Chiat Fragrance hotel as it was deemed one of the nearest place to Bedok North where the medical centre was at. I wanted to book Le Peranakan hotel in the first place as it was located not near where the night life is at but after researching much, I came across a photo by a tourist who stayed there and the room was sure very very very tiny looking to fit all three of us in, so Fragrance Hotel it is for us. Not to say Fragrance Hotel was spacious too but a decent clean place for us to rest a night will do.

There were other decent hotels around too but the prices were just too high and not worth it as we were only reaching at about 730pm and ciaoing off at 830am the next day.

Dr Erwin asked us a few questions regarding our family background, my pregnancy journey if I had any complications, places that I stayed at that might gave had affected the fetus inside me, Jaden's vaccinations and then on to Jaden's behavior. He then told us that Jaden does have ASD. 

Dr Erwin then recommend us to start the GFCF diet and observe if there is any improvement in Jaden's behavior. For a start, since 4 days after we took him off dairy completely, and trying our best for gluten too, we noticed that there is a tiny weeny bit of improvement in his focus. He looks at Mr more and also, when he was younger, he used to imitate Mr playing aeroplane and then he regressed that action. When we were at the LCCT airport waiting to board our plane to Sg, and both of the boys were playing, he started to initiate play and imitate the action again. I am really praying that it was the off-casein diet that did the job.

We were asked to do 4 tests first.

1) Heavy Metal Testing -Hair Analysis
2) IGG Asian Food panel for 96 food items
3) Comprehensive Stool Analysis
4) Urine Organic Acid Test

We only manage to conduct the first two tests at the clinic, whereas the other two had to be done back at home since Jaden did not poo the day before or poo-ed when we were at the clinic. The boy has yet to be toilet-trained so he can't pee on demand too.

For the hair test, Dr Erwin did the  prick blood test. When he pricked Jaden's finger, all Jaden did was turn and look at him in the manner "Why did you do that for?". It is in one of the many traits that might be found in children with autism / ASD that they have high threshold to pain. Jaden only cried murder because he did not like the idea of us holding him down while Dr Erwin tried to squeeze enough trickles of blood for the lab test.

Next, he cut quite a few chunks of Jaden's hair near the back / just an inch or two above the neck area for the hair test.  That too, Jaden struggled because he simply just did not like anyone to touch his head or hair.

We also took back a few supplements for Jaden to kickstart his biomed journey.

We got four types of supplements to start off first.

1) Klaire Lab Ther-Biotic Detoxification Support
2) Houston Nutraceuticals Peptizyde Multiple Protese
3) Metabolic Maintenance Spectrum Awakening
4) Mollers Tran Fish Oil

In total, everything came up to SGD2300 for this first consultation. Come to think of it, the tests were so much cheaper compared to the Malaysian Psychology Centre that wanted to charge me for the test and consultation. Parents with child consultation can come up to a sum of RM1200. Thats freaking expensive compared to a mere SGD200 consultation fee done in Singapore. 

We have yet to start the supplements with Jaden because I have not  collected his pee samples yet. I am going to start experimenting my luck on Friday onwards so hopefully by Sunday night, I will get to collect the right specimen and ship it off early Monday morning to US.

For the stool test, Jaden gave me one good sample that filled the two tubes to the rim and I had some leftovers too. Awesome experience I tell you. Each time I think about it, I just want to puke myself silly with tears coming out from my eyes. :) I shipped it out this morning, expected to reach Friday our Malaysian time, so I am thinking they will reach US Thursday. Shipping for a 0.5kg box with the stool and ice pack came up to the sum of RM225.35 with Fedex. The people at Fedex were actually very friendly and helpful. I drove to the main office at Uptown Tower B and by doing so, they actually give a RM10 discount.

So far so good with the GFCF diet. Jaden does not have any cravings or requests for the food he used to have IF he does not see it so we try our very best not to eat the 'forbidden' food in front of him. 

He is still jumping, having the weird looking out from the corner of his eyes symptom. as for eye contact, sometimes he looks at us in the eye, sometimes he chooses not to. He has been rather affectionate lately, going on a kissing spree with Mr and I. He babbles more now but his tantrum is still rather unstable. One minute he can be babbling, smiling to himself, the next minute he might run charging towards me and cry. He still spins but when we ask him to stop, he will / or might stop unless he really feels that he needs to spin and spin.

So there you go with my first visit to Singapore to get Jaden treated. I hope with the next visit, I might be able to present more good news on Jaden's behavior development. The next step now I am going to take is to enrol him for intensive 1:1 ABA therapy.

Second baby steps

We are all heading down to Singapore today for tomorrow's early 9am appointment with the DAN! doctor. 

Hopefully we will get to learn more what to do with Jaden, what to give Jaden for his meals and how to supplement it back with nutritional supplements things he would not be allowed to eat -gluten/casein..

There is one DAN! doctor too in Malaysia but in Gleaneagles. I guess we will be making Dr Erwin Kay his primary DAN! doctor while if Dr. Ng (M'sia)'s fees are about the same as Dr. Erwin, then maybe we will consult her too. I am just hearing that lab test costings in Malaysia might be a little more expensive but if I were to take calculations of flight and accomodation in Singapore, it may just come down to the same price, unless I go alone and stay over at my friends' place.

*sigh*

Nevertheless, this trip is our SECOND STEP forward in the fight against autism.

Rejection #1

We failed at the rice milk attempt. Even when it is in vanilla. Jaden rejected it at the very first taste of it. 

Curious to know what his food will taste like, Mr and I both tried them out too. Sad to say, the chocolate flavored cookies we got for him tasted like cardboard. You have got to eat more to get use to the taste. I felt so bad for Jaden instantly.

The vanilla-flavored rice milk, however, tasted just fine to me. Although it only did not felt as full as the real deal is, but it was not that bad. I even tried making half dairy-half rice milk to mask the taste but the smartypants realized it in an instant. He totally refused the milk, screaming as if we were going to behead a chicken.

Mr and I were scared that he will get really hungry in the middle of the night and there was nothing else in the house that could be given to him. In the end, he ate 4 organic bananas and off we all went to bed. 

The bananas, too, did not taste as sweet as the normal commercialized grown bananas. They were less sweet but luckily Jaden ate them without any resistance. *sigh*

When he woke up in the morning, I gave him dry chicken hor fun and he happily ate all the hor fun. For lunch, we had bah kut teh and he finished his whole plate of rice too. His dinner before bed time is a bowl of chicken porridge cooked with carrots and potatoes. The porridge, I hope, will be able to last him through the whole night... I wonder if he misses his milk?

Thank our lucky stars, he actually ate the choclate cookies and asked for more. Its a small step to a start, ain't it? I hope he will continue to accept all these new food in his menu.

Mr and I went shopping today for more organic stuff for Jaden. We bought extra virgin olive oil, gluten-free pasta, more organic beef, organic chicken and organic cucumber and brocolli. It will be quite enough to last us through the whole week for Jaden's food menu.

Its time to start drafting out his menu, which I hope will one day be back together the same as us again.

Time to start monitoring his behavior and see if there are any changes then to this start of GFCF diet for the boy.

First Step ...

When Jaden started spinning round and round and moved on to spinning wheels and whatever that was round, we were told that that was one red flag to look out for but the Mr and I was adamant that nothing was wrong. We were in denial.

Jaden started to look at things from the corner of his eyes. Others who does not know him, think he was arrogant but then, we as his parents felt something was wrong.

Other children started talking and wants to play with their peers but Jaden rather play alone and can only says Daddy. That also, I really wonder if he meant the word he said or just something that sounds like Daddy to us because we badly wanted him to speak.

Finally, after 3 years of waiting for some improvements, we knew we had to seek help for Jaden. We need to get him diagnosed by a specialist for his situation.

After researching on the Internet, I found a psychologist to review Jaden's condition. Alas, that was rather a rip off by this psychologist. Who charges RM600 to talk to the parents and then another RM600 to observe the child? AND then wanted another RM600 if we wanted him to give us a report on Jaden.

Mr blew his top and got really upset because the prices that the psychologist listed down was way out of our budget. Yes, he too, wanted Jaden to run some tests and take the supplements but the charges were crazy. He quoted us about RM20k a month just for the supplements. Who can afford such expenditures even if it meant it could cure the boy?

Well, at least just one thing we learnt out of that lesson was that Jaden was mildy autistic. He might just be suffering from Autism Spectrum Disorder (ASD). It was really so disheartening to know that there are people out there who take advantage of such situation just to make money. I, personally feel that this center is quite a scam for their rocket high charges.

So, I went all out to make a thorough research on where I can seek help, whom I can talk to and which doctor best that can help me help my son.

I thank Marissa for her blog that was out there for helpless soul like me, who did not know where to begin. I emailed her for help, to question where I can seek the best possible help I could give Jaden and by reading her blog, I felt hope when other sites on the Internet tells me that there is no cure for autism. Her eldest daughter has recovered from autism and I pray mine, too, will, with the help and support and determination I pour in to make it work.

I made that call to Singapore and book an appointment with the infamous Dr Erwin Kay, who is a DAN! Doctor. DAN! stands for Defeat Autism Now! The Defeat Autism Now (DAN!) project, created by the Autism Research Institute, created an approach to autism treatment called the "DAN! protocol" based on the biomedical theory of autism. Many parents believe that DAN! doctors are the best choice to treat their children with autism, and there are many testimonials to the effectiveness of the treatments. DAN! doctors, however, do often prescribe treatments and diets that mainstream doctors question or even denounce. 

Most mothers in KL BioMed Forum recommended him and through that forum, I learnt things I never thought I would again -Science and the variety of names that would soon be a part of our daily lives. I read about the tests that Jaden has to take and asked for a rough estimation of the costs our family is going to face.

I invested in my first book, Jenny McCarthy's 6th Book on Healing and Preventing Autism: A Complete Guide, whom she collaborated with Dr. Jerry Kartzinel, the doctor who recovered her son, to write the book. Their new book provides helpful guidelines on how to best protect their child from developing autism. The book, too, proved to be very helpful in this journey of mine to battle out Jaden's condition.

This morning, was Jaden's last sip of dairy milk.

Finally, I went over to Village Grocer at Sunway Giza to buy him his first Pacific Rice Low Fat Milk in Vanilla flavour. Mind you, I learnt that organic things do not come cheap. So does GFCF food. This 1ltr of rice milk costs RM10.90. There are of course another brand out there on the shelf by Pure Harvest Aussie Dream but that comes only in plain flavour. That too, 1 ltr, costs RM10.90 and that infused with Calcium, costs RM11.90. 

Almond milk was also sold on the shelves but that came up to about RM23-RM25 for 1 ltr. I dare not let Jaden take almond milk yet in case it triggers off the allergy for nuts in him. 

Jaden will soon, have to go on a strict Gluten Free Casein Free Diet (GFCF). I thought I might as well start off somewhere by buying Orgran Outback Animals Chocolate Cookies for him to munch on as treats and Orgran Rice O's Wildberry cereals which are totally GFCF. The cookies costs me RM10.90 for a small box and the box of cereals, RM15.90.

Thankfully there are a few of these supermarkets that carry a variety of organic and GFCF food. Village Grocer even carries organic beef at their beef section. I bought a tray of stir-fry cuts of beef to cook for Jaden. A small step to begin his journey.

When the parents of these autistic children mentioned that their children's behavior became totally uncontrollable when they have casein or gluten in them, I didn't really understand what they meant until I saw Jaden acting out after having a few slices of the 6 Cheese in 1 pizza by Pizza Hut.

That was when Mr and I decided to do away with Casein (Dairy) stuff, and the timing just came nicely that Jaden's Enfagrow milk powder was finished. 

There will be quite a lot of changes I forsee.

There will soon be no more going out to eat, hiding from Jaden if we ever wanted a snack and well, going organic in everyway we could think of.

I look forward to Dr. Erwin Kay's help this coming Tuesday when we meet up with him and hope the tests would show us more to what we can do to help reverse this evil that lurks within our precious child.