Sunday, October 31, 2010

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.


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

Thursday, October 28, 2010

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.

Wednesday, October 27, 2010

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.