Friday, April 27, 2012

Diet Plan 2012

Jaden has been on Gluten Free Casein Free Egg Free (GFCFEF) dieDr t for almost 1.5 years now ever since we got his IgG allergy test back, followed with other forbidden food.

Sometimes we avoid soy if possible but most of the time, I close an eye and let him have some of these GFCF food that contains soy. He is not highly allergic to them, although if we would want to be safe, its best to avoid or have it on rotation and that is what I do. 

We have seen quite a change when we took him off gluten and casein initially. He showed signs of eye contact back again (it may be jut a little but it hit us on the positive note) and some imitation which he used to do and stopped.

From then on, we never looked back, and stayed on quite a strict diet only when we have to turn to KFC for treats and his love for fries. This, is cheating and BAD. Not advisable but since we have his Digestive Enzymes to help us break down these proteins, we got to cheat a little. 

I have mastered bit by bit GFCF cooking and now, I am thinking he has to incorporate in another diet which might help us push our luck further in recovering him.

You see, supplements and therapists are not going to heal him alone. It is connected to what goes into his gut daily and Dr Natasha Campbell-McBride stresses that a healthy gut means a healthy person and all these illness/diseases would go away when the cells inside the guts are newly-reborn again.

To do that, of course, we have to adhere to her GAPs diet. It means Gut and Psychology syndrome. 

One can read a brief introduction of GAPs here.

Short to say, it would be quite a challenge in the beginning as this means really really staying home and cooking and more cooking and really using nothing but organic and fresh produce.

This diet allows eggs in the second stage of the Introduction Diet but I am a little scared as Jaden's test results shows that he is highly allergic to eggs so well, we shall see. 

Some parents on the forum would be starting their children on this diet too, maybe from June onwards, so this would most probably have given me some mental preparation to face it. 

The sooner we start, the sooner our child might recover, of course, I still think I would be continuing supplementing Jaden with his supps and maybe chelation on the go too.

For now, I am just going to go on with his ABA and OT therapy, and I guess by this year, speech therapy and of course, diets and chelation.

Nobody says this is going to be easy but seeing all these positive things that Jaden never fails to show me drives me on to want to help him and be with him in this journey of his. 

What a Blow !

What they say, is that once they can suck and blow, speech will follow and I am very excited.

I am really holding on to this hope that one day, my son and I can have a conversation with each other even if it means him saying "No!" to the food I put on the table for him.

Jaden has finally mastered blowing just this week. I am utmost grateful to his team of therapists who has been so patient with him, teaching him and using all sorts of method to get him to grasp the concept of blowing.

I am so proud of him when he blew the candle out, and today, he got to blow bubbles. 

One can't imagine how happy I am that he is able to do all these. I still remember those days that when we were at Kidzports and all his peers, when they were all 2 years old, and each and everyone of them could blow bubbles when asked, only for Jaden who will be in his little world, doing other things instead of joining his peers.

Well, he may be turning 5 soon this year and only mastered that skill of a 1.5 / 2 year old but I am still nevertheless that he mastered it. He can take his time to learn all these, but like I mentioned before, as long as he is willing to learn, Mr and I shall be patient and find people that are willing to be on the same ship as us to teach him skills he needs to pick up and sail through on his own in future.

I am so excited, now that finally, Jaden will get to blow out his birthday candles on his own starting this year.

Happy 4 years 7 months old my dearest baby !!!! <3

Wednesday, April 18, 2012

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. 


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. 

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 ...

Wednesday, April 4, 2012

Moving forward

Today was the day of our ABA team meeting. We have a team meeting every month, where all Jaden's team of therapists and supervisor will meet up together with me, discuss about his developments in his sessions and everything that happened during class / after class hours.

The past two team meetings and today's, which means in these three team meetings, I have been hearing praises from his therapists that he is picking up really fast in things they teach him to do and of course, the first few sessions of trying out new things would be tagged along with screams of tortures. Yes, that is how dramatic my little one can get. He would scream as if he is being tortured inside class, whereas its only one of the most normal stuff like pulling or rolling things or touching wet paint. 

Some of you might not understand why we would need Jaden to touch all these things. That is because most of these autistic children has sensory issue and to desensitize him from all these, he has to get use to them, and soon, once he familiarized with them, it might be even a way to make him feel at ease, comfort. It is somewhat similar to how a child would need his pacifier to sleep or bring his bolster wherever he goes. So to desensitize Jaden's sensory issue is very very important.

Jaden has mastered matching things almost perfectly and currently, we are doing a scanning program. The therapist will be holding lets say a balloon in her hands, and then she will ask Jaden to hand her the balloon which is lying on the tables with 5-10 other things. He needs to see what she is holding in order to match the right one on the table and hand it over to her. From there, once he master that, they will just try to say balloon without showing what they are holding and hopefully, by then he will understand which items on the table is the right one that the therapist is asking for.

We will also be including non-identical matching, just to challenge his mind. 

Non-identical + Matching = ? (doesn't make sense right? :p)

Well, its like ex: socks - He has to pick out from 15-20 items on the floor and hand it to his therapists, daddy's, his socks, and baby sock.. just to see if he can match them although they are of different sizes or shapes. As long as he understands the word and maybe, if I am lucky (although I think I am asking too much of him at this very stage) that he understands what are the functions of the things the therapists requested for.

I told my ABA supervisor that the next goal for my son, which I want to set is to let him feed himself independently using spoon. So that he can feed himself his meals. (Self-help program)

So guess this month is the month we are going to do that and we shall see how the reports come back next month when we have our team meeting again. 

Jaden has learn how to zip and unzip, wear and take off pants, wear and take off socks, wipe hands dry and most probably next month, I am going to ask them to teach him how to wear his shirt. 

Potty training is still going on, but we move on up to another level. This time, we bring him to the toiletbowl to pee instead, unless someone is using the toilet, then only he will be allowed to pee inside his potty. So far, he has been doing well. *touch wood I don't jinx it by saying it*

I am supposed to call up this dental clinic and make an appointment to have Jaden's teeth checked out as he has one tartar-ed covered teeth on his upper gum. *sigh* I didn't remember me having to go to the dentist that young.. and the best thing, he ain't eating anything sweet too. So maybe its just tartar and not some decaying tooth . That would be really scary, wouldn't it. Just wondering how he will behave at the clinic but luckily, the dentist is a family friend who totally understands his situation, so I guess I won't have a new person eyeing me badly for a kid who does not sit still. 

Thats about it, his updates for now. :)

Sunday, April 1, 2012

MB12 shot


Whats that? 

It is actually known as Methyl-B12. You can read all about MB12 and its breakthrough (its not a cure but part of the recovery journey) with autism here

That was the first question that ran through my mind when I first heard of it and parents have been raving about how they see positivity from the MB12 shot and boy, was I ever ready to want to give that to Jaden only to be told that he is not ready for it until just recently, in February. 

We had the first MB12 shot administered by Dr E, as I need to know how to inject into that little butt of his and how much to give each time.

The first shot was 0.05ml, and that, unfortunately was done without the numbing cream, so it had Jaden screaming in pain for a little while and shooting us dirty looks as if we had wronged him. 

That, I saw a little side-effect that would have been better off, was hyperactiveness from my already a lil active boy. He was jumping up and down the couch by the time we reached our hotel room.

Getting back to Malaysia, and trying to get my hands on the needles, those really fine insulin kind of needles was pretty confusing when it comes to me trying to convey what I wanted from the pharmacist and she ended up giving me empty syringes instead. *slaps head*

Then a kind mother helped me get a pack of 10s when she was getting hers and finally today, Mr and I administered the shot on Jaden's butt cheek. 

Since I saw hyperactiveness on 0.05ml dosage, I reduced it to 0.02ml this time round. Shall see if it works on Jaden this time, otherwise, we just have to up the dosage. 

To not traumatise the boy, I applied the numbing cream on Jaden 20 minutes before we injected MB12 into his butt cheek. 

The only struggle and cries that came from Jaden was due to not liking me pining him down the bed while the father quickly injected him with MB12. He was alright soon after we let him go so I guess it was not a painful affair although the father was feeling all jittery and scared when he was holding the needle near the struggling little butt cheek. 

So for now, guess its just time for me to monitor him and see if there are any side effects and the second shot should be on Tuesday and then Thursday and then Sunday. 3x a week for now.. if all goes well with 0.02 for today, I shall try to up it to 0.05ml the next round.

Finally !