Developmental Pediatrician -First Appointment

I made the call in February. I was then told, ok, we will slot you in.. the next available slot will be in Oct 29th. 

and my reply was none other than, "Of course, I would love to have that slot!"

It was utmost important that I have Jaden to go have a go-see with Dr Ranjini, who is a developmental pediatrics. I have procastinated on this matter since 2011 when all of Jaden's therapists had asked me to arrange an appointment with her and ask for a proper diagnosis for that ass of a Dr Quack in Taman Desa was nothing but a Quack, a Fraud and best of all, to put a label on him, a conman who is out there to milk money off helpless, desperate parents.

I actually called up Baby and Beyond, the clinic in Bangsar Village II, which Dr Ranjini does go to. I opted for that clinic instead of Sunway Hospital is because, first, its a hospital. Second, its in Sunway and I rather head on to Bangsar anytime. 

One Wednesday, the clinic called us and asked if I would be able to go in the next day as they have a cancellation and I am next on the list. 

I answered YES without hesitating, hear what the lady had to say to me -what to bring (med certs/immunization cards/tests) and then after we hung up the call, I started to panic.

Oh dear! Jaden was not on his best behavior for quite some time now. Its been about 2 weeks since hes on a complete rebel mode, monster mode.. whatever negative mode you can think of, he is that!

but still, I would not give up on this meeting.

We went in the next day, just Jaden and I and after filling up the necessary forms, it was our turn to enter the room. 

Dr Ranjini -first impression of her. She is a very approachable lady, someone whom you will NOT dislike at first sight and is very kid-friendly, somehow a sternness somewhere but it was all good. She asked, she listened, she observed, she tried to engage him in play and work only to be met by a boy who prefers to jump down from her chair, rummage her table instead of the table set out for him. Obsessed with certain puzzle pieces, trying to squeeze into her couch, hopefully he can just blend right in or something like that. 

He was not the compliant boy that I used to know. He showed a bit of temper when asked to do work or coming for tabletime. *sigh*

There are times when he will have his eye contact looking at things earnestly, like when Dr Ranjini took out a ball and played ball with him.. 

After one hour in the room, the boy decided he had enough and opened the door by himself and went out to the reception area by himself.

Luckily there were no other patients or family around, so she allowed him to go out and we carried our conversation by the door, keeping an eye on him while we chatted on. 

What I like about Baby and Beyond clinic is that their main glass door is locked and could only be opened with the buzzer so it really felt safe and that they have a big bus that the children can play pretend as a bus driver, a big play house... Jaden? He was interested in the big glass window looking out and also the brochures. Trust me, when we left the clinic, it looked as if the tornado hit the brochure shelves. 

It was a very reasonable fee she charged us for that 1.5hr session compared to Dr Quack. I really hope karma will hit him back on prowling on parents like us. Dr Ranjini informed us that she will be sending the report in a week or two, so now we are waiting again, for her diagnosis.

Whatever it is, I would think I am alright with it by now as I have come to terms about my son's condition. So with this report, it would only really be a guiding light for me on which issue I would want to address first and work on...

Dunking the Dump

We are now on two capsules of Humaworm a day and I think I lost count of how many days it has been but I have been seeing his body releasing things on its own.

I am not talking about seeing live or dead worms coming out together with his poo but small tiny red bumps/dots appearing randomly on his body. Today, it might be on his thighs, then tomorrow, I will spot another tiny red bump on his arms, and the next day.. you get the idea.

Feeling quite alarmed over it as rashes also came and go, I try to google what could be causing it and it seems that it might be symptoms of yeast. From my understanding, Humaworm does not only play the role of being anti-parasite alone but also in clearing toxins out. You can read all about it here . 

So, I am just going to sit back and wait till the 30 days are up and then wait for another 1 -2 weeks and if this condition persist, only would I consult with his doctor. However, I will still keep the doctor in the loop just to let the doc know what is going on right now.

Last week, we have been to three kindergartens, rejected by two, one -I haven't really called back to arrange for observation but they seem rather reluctant. I am still not very ready to face these rejections again so I am backing down for a while before trying out again. 

Jaden took a dump at W's house last night. In the toiletbowl. Words cannot describe how beautiful that moment was to me. I know, its poo we are talking about and where does the word beautiful fit in right? BUT it was indeed how wonderful that very moment was and I hope, that is going to be the beginning of him accepting to sit on the toiletbowl to do his business and no longer have to have his diapers on to let those nasties out. 

I noticed though, that his poo was floating and in one of the books I read, floating poo would mean he is very yeasty. Yikes.

and the irony of all that, I was just telling W how constipated Jaden had been for the past two days and if he did not poo last night, it would have been his third day constipated and there, he decided to let it out. *beams in pride*

Jaden is currently now on Nystatin 2x daily and I just started giving him Candidase and P5P today. Seems he is tolerating P5P rather well compared to B-Complex, no aggresiveness or irritation shown.. 

I am gearing up to start AC chelation this weekend. Yes. No more procrastination as I am really getting into desperate mode. This very weekend, which means tonight, I will be like some druggie dividing two 25mg capsule into 5mg and putting them into little paper packets, ready to be mixed with his drinks. 

God, I pray you will give me the strength to go through these three days of chelation, making it a breeze through. 

Multivitamin Forte

I once, had tried giving Jaden the Klaire Labs Multivitamin Forte and he rejected it with so much struggles and tears that I gave up trying.

This time, I am adamant to keep to my 2012 resolution and be a warrior mom and boy, he actually took it in without throwing a great fuss like before. *touch wood, hoping I am not jinxing it by saying it out loud*

To know what it tastes like and why Jaden rejects it with such great struggle, I need to try it myself to know the reason why and yes, it does taste bitter but most good stuff are bitter aren't they?

Well, this time I stuffed the capsule powder into his beloved sweet mangoes, oranges and even tried it with his soy yoghurt mixed with maple syrup to even out the bitterness. 

Although there are a few rejections every single time I bring the thing to his face, he will eventually open his mouth and eats it.

This multivitamin forte is the third item that I had introduce to him and I have been seeing some loose mushy stools. Almost similar to diarrhea but this is not the watery type. Just mushy mustard colour and he also have some well formed ones, just that it is now more to mustard coloured ones compared to his previous black, sticky hard stools that were hard to come out when he pushes. Now, its satisfactory but I am keeping my eyes open as I don't like it when his stool is in a mushy diarrhea form.

Tomorrow, I shall start on his antifungal again. Gonna be on a two weeks course again and hope that his concentration comes back again, or be a lot lot more aware than what he is now.

What I noticed that after taking his B6, he has turned a little more hyper and his stimming behaviors are back. He is starting to spin his cars, so I try to keep them out from sight, a few times I caught him walking on toes. OH NO! but that was only a few times so I am trying to observe longer just to hope those are one time cases. He also, is getting a little obsessive about things so that is a no good sign too. He sometimes do get lost in a daze, the faraway look yet he is still aware of other things and showing me other positive behaviors.

Just today, there was a display of fireworks outside my balcony, and he was actually appreciating the fireworks. We have brought him out to see fireworks before and that just went unnoticed. Today, he asked for more when it ended. He was excited and happy to see the display going off!

Then, now when his diaper is full, and he comes to me and put my hands on his diaper. As if he is trying to tell me that it is time to change his diaper and that he is feeling uncomfortable and he wants a bath YET when after he poos, he still don't show me signs of being uncomfortable. Only once, he ran to me after he pooed because he was feeling very uncomfortable and itchy due to a rash that happened. I did not notice any more of these uncomfortable signs anymore.

Is this the doing of the B6? Cant be, could it? Shall shoot his DAN doctor an email after his 14 days on difuclan. 

Updates

It has been 10 months since Jaden started his ABA program and boy, I become a prouder parent each time, every week, every month.

Jaden has been showing good progress so far, sometimes still lost in a daze but overall, he is doing well and it puts a smile on my face everytime he puts what he learn into practice.

He had never really shown an interest in wanting to play with toys and voila! now, he can even initiate and choose the toys he wants to play and plays it with a lot of patience.

Jaden is so much more aware of his surrounding and things that are going on. He is actually quite observant as he picks up whatever he sees, imitation. He tends to imitate after a while observing.

Although we (Jaden and us) did not get to achieve a breakthrough in the verbal sector, he is much more vocal now, letting us know what he likes and what he does not by of course, if he likes a thing, he would give you a million dollar smile and if he does not agree or ain't liking what he sees in front of him, he will whine and whine and closes his eyes. As if if he can't see the things, its not there to him.

Jaden's level of understanding is also much more better. He is showing higher compliance, obeying instructions although there are times when his mood is cranky then we shall just see a screaming monster. 

I tend not to allow him to get on with his ill-mannerism. Afterall I want him to learn that he would not get the things he want by showing negative behavior. I am one parent that really can't stand naughty boys, be it a special needs child or neurotypical child. Children learn fast when it comes to bad behavior and its our duty as parents to ensure that they don't go down that road. Some people do tell me that I should not use the cane on him but well, being Asian, being me, on how I was brought up, I believe that the method works. At least it shows better results than the West where children answer back at their parents,giving smartypant answers. You might say, it allows creative thinking but sorry, I ain't liking creative thinking that way. 

Since he has been showing positive results, his ABA supervisor gave the green light to move on into other programs.

We are now going to try to teach him how to blow because one may not know it but blowing, sucking, chewing helps with his oral muscle and that might just be our little needle (key) in the haystack to help open the door to Jaden being verbal. 

Other than ABA, his DAN doctors are also pushing up more supplements like vitamin B6, MB12 shots and chelation to see if that would help with the coming of speech too. I am so afraid to hear that he might be diagnosed with Oral Apraxia, which I hope its not.. I pray hes just a late talker.. 

So how does he communicate with us, you would ask. How do we know what he wants / wants to do and all. Well, its easy to tell since we are his parents. Now I understand why my parents say even before I move, they would know what I am up to next. Jaden will physically let us know where he wants to go and what he wants to do. 

Its a long tedious journey and be it how long, as long as he is my son, I shall walk on with him down this road. 

10 things ...

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.

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.