Day 1 # Round 1 on AC Chelation

So here I am, sitting in front of the computer, all bright-eyed, runny stuffed nose, nursing a rather bad sore throat which if I am not careful, Mr fever might just trail along to party and a headache.

Just popped two panadols and clarinase and downing as much water as I can and waiting for the next round of chelation dosing for Jaden, which will take place at 1130am.

Yes, so far, I have succeeded feeding it to him -330pm / 730pm / 1130pm / 330am / 730am ... This is how AC Chelation is like. 4 hourly dosing for the next 72 hours and then days off until the next Friday comes and we go on a round 2 provided Jaden is all healthy and shows no sign of being attacked by nasty fever/flu/tummy bugs. *touch wood*

He had been rather pleasant on the first dosage, that I badly want to believe that it is the chelation's doing.

Jaden was actually sitting down on the floor, crossed his legs by himself and he was sitting there for quite some time without getting up to jump and stim. It was incredible. 

Second dosing come, he was still pretty alright, seems rather aware of things and by the third dosing, he was all giggly. 

In a euphoric state of mind, I am guessing he was having a yeast flare up, so I am going to try to add in OoO together with Nystatin and see how it goes today.

It had been quite a crazy day yesterday, a little overwhelmed with additional supplements I have to make sure he takes and on top of that, drinking extra load of water than he usually already have. 

Imagine this..

Morning on an empty stomach, I give him 1 Digestive Enzyme and 1 Candidase (20-30 min before breakfast).

Trick him into bathing before meal, and then immediately after his breakfast, I give him 1 Folinic Acid, 1 Magnesium Glycinate, 1 DMG, 1 P5P, 1 Ester-C Bio, 1 CoQ10, 2 Nystatin, 2ml of GPC Liquid, 5ml of Cod Liver Oil (CLO) and a drink of 1/4teaspoon of Calcium Citrate mixed with drink. 

One half hour after, I pop 1 Humaworm in him and wait for another one half hour before I pop in 1 Zinc Picolinate and 1 Factor 6 (probiotics) into him.

Which gives me another one hour before I start on giving him 1 Digestive Enzyme and 1 Candidase again and wait for 20-30 minutes before his next meal.

After lunch, its 1 Magnesium Glycinate, 1 Folinic Acid, 2 Nystatin, 1 Milk Thistle and 1 Cognitive Factor.

30 minutes before meal time, another round of 1 Digestive Enzyme. 

After dinner, its 1 Magnesium Glycinate, 1 Ester C-Bio, 5ml of CLO, 1 Milk Thistle and another drink of 1/4 teaspoon of Calcium Citrate mixed with drink.

Nearing which, it would have been about 10something at night, one half hour after his dinner, I pop the second Humaworm in him, wait out for another hour or one half before I send him to bed with 1 Zinc Picolinate and 1 Factor 6. 

All those supplements, of course the four hourly dosing DMSA in between. 

Today, I have to figure out where to fit in the 2drops of OoO. If the 2drops 2x daily OoO does its' job in keeping the yeast at bay, then I shall keep the dosing at that. If not, then I will have to add on another additional 2drops after dinner tomorrow, which I will probably wait out and observe  first for today.

Speaking of which, I have yet to figure out and read back on his DAN's note on what supplement to give him to back his immune system up after doing a round of chelation. *sigh* 

On top of feeling a little overwhelmed with a sudden influx of the additional supplements, the 'badly sick' me have to be alert at all hours because Mr has ZERO ideas on what I am currently doing, giving Jaden and how to give it to Jaden. 

All I want to do is just to breezefully sail pass this #Round 1, so I can end this procrastination and move on a step closer to the light at the end of the tunnel. 


p/s: Crap, I forgot totally all about Epsom Salt Bath and applying gluthation transdermally. What an idiot I am !!

Combatting Yeast

Everyone has yeast, and you can't get rid of all of it. So, if they are there for a reason, I am sure they also have a part to play in our body balance, just that the yeast I am talking about are the bad bad ones that causes trouble instead of helping out. 

Candida.

Jaden's DAN doctor, Dr Rina, could not hear his bowel movement properly. She suspected that his yeast is back, which explains his irritability that could just hit in a blink of an eye, restlessness, and yes, he is back to slightly walking on his toes again. 

So, here we are back at square one at combating yeast, even after we did his second round of Diflucan early this year. 

This time, we are going to be using Nystatin for 2 weeks, together with Oil Of Oregano drops. two drops twice daily for two months. From there, we are going to combat it with Candidase and .. wait, are you scratching your head already wondering what I am yabbing about? *sigh* Its all this mad mom talk about antifungals, drug-based and natural based. 

Of course, one just do not combat yeast easily with just antifungals. They need to have backup soldiers as well helping them out, such as a tough probiotic, which Jaden is taking -TherBiotik Factor 6 and his daily dosages of 500mg Ester-C Bio. 

I am already fearing die-off reaction before I am even starting out but it should be a small problem compared to what I was facing two years ago when he was absolutely on nothing but gluten and casein food intake. Epsom salt bath could help with the die-off partly so thanking my lucky stars, I have another soldier to help take on these nasty yeasts. 

Being on Diflucan the last round, and that being a very strong drug, we are advised to take him for another round of liver,kidney and complete blood count test to make sure he is still in the pink of health to carry on this fight. 

I have made an appointment with another mother who will be coming along with me and her son. So both of us will be there to support each other when our sons are being pinned down to draw blood. 

I hope my giving him Milk Thistle has help protect his liver and at this very moment, I still have not figured out what protects the kidney other than letting him drink loads of water. 

Things have not been that easy around in the house these few days.

Jaden is having his mood swings again, where he will suddenly burst into tears all of a sudden, as if he is overwhelmed with sad sad upsetting thoughts and then suddenly hes ok, acting normal and then the tears come back again.

The hubs suspected that I may be giving him supplements that does not agree with him or that I may have been overdosing him with some. Erm, well, to defend myself, I am only following what the doctor prescribed to me. The prescription is still sticking to the bottle. Then he accused me of getting myself confused seeing two doctors who gives two different prescriptions but hey, the supps that they recommend are the same, just the dosages differ in one or two but still when the positive shines through, you don't say your thanks to the doctors and me but when some things like these happens, the accusations are thrown in my face with utmost shit-talk and say its best that I should not even be doing this to my son. 

Like I previously mentioned, its a tango. One step forward, two steps back. Slowly but surely, we tweaked until we find the right comfortable dosages, supplements to work it out ... and hey, I am not the one that is good in science but I am trying my best trying to help my son. So, if you do not plan to help, don't even open up that gab of yours. 

and... drumroll.. best of all out of the consultation, Dr Rina sees a need in me having to upgrade his diet. 

Specific Carbohydrate Diet (SCD)

So what is so hard about it since I am already half mastered GFCFEGCF (free of gluten/casein/egg/corn) diet for Jaden right? Check out what is supposedly legal and illegal to eat on top that I have to consider his other food allergies, despite even if there are some foods on SCD list, like almond, milk, cheese and stuff are to be avoided. So which means like most probably out of 100 food out there, there are only really 10-15 food that I can play around to fit inside his food menu .. and to limit his carbo intake. 

TAKE AWAY RICE ??? NOODLES ??? but he is as Asian as he can be. His love for rice and that fills him up. 

You can imagine how I feel when I hear and read about this diet, don't you? But well, I am in no despair right now for there are other options such as the GAPs (guts and psychological syndrome diet) or BED ( Body Ecology Diet) that I can consider .. but its still almost the same when his food allergy list and GFCF is implemented. 

Shall end with this one song ...

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.

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.