Sunday, August 12, 2012

Swallowing capsules

I can proudly now say my almost 5 year old can swallow capsules. 

Yesterday, while we were all ready to have our dinner in Melaka, after paying my mother-in-law a visit, I decided to try my luck by just giving Jaden his digestive enzyme just like that, without having to insert it into bits of oranges (like how I do it at home usually) and he surprised me by just swallowing it and quickly sipping his water after that.

So, to test Jaden further that it is just not a coincidence, I tried again with his Trienza in between his meals and he did it again, and again for other supplements. 

Conclusion, YES!! Jaden can swallow capules now and these capsules are exactly small or tiny. You can imagine how happy and proud I am of Jaden.

BUT this success did not come easy.

We started our biomed journey back in Nov/Dec 2010 and the first year we were on biomed, it was a battle each day trying to get those supplements into his body. Both Jaden and I were both constantly crying and fighting. Him crying because mummy was being a crazy lady forcing him to drink up all those bitter stuff and mummy crying because Jaden really put up a good fight and daddy was on his side instead of mummy's. I was called crazy, I was accused of traumatising my own son ... *sigh* yes, I have been through lots of those moments but I stuck through my own method and look at us today.

I have to admit, it had never been easy.

I was a very forceful mom. I would cane him until he finished up the drink, I would shove the pieces of fruits with half the capsules in and block my palm at his mouth so he can't spit it out and have to take it all in. Yes, during those days, he gets caned quite a lot... and as he grew up, getting used to the idea that if I take it all in without a fuss, it would be all over in a minute or two. 

First I started out having to open up all the capsules of the supplements and mixing it into his drinks. Fruit juices or his potato milk to mask the flavor although I do have to admit that some of these supplements are just plain nasty and imagine he has to drink it all up. 

Then I started sprinkling out some of his supplements into his bits of fruits such as persimmons, mangoes, watermelon. Sweeter fruits to mask the overall bitter taste. Sometimes it works, sometimes no and he learnt that these fruits are 'bitter' too and he started to refuse taking them.

I figured out its time I have to try another method to get it all in again. I almost gave up after a bad fight over the supplement intake issue, and I gave it a rest for quite some time before I told myself, its now or never for Jaden to recover. If its not me to do all these bad cop job, who else would be willing to, right? 

So I tried again, this time, I only divide the capsule into half, their contents still in the capsule and I stick them into fruits like bananas and mangoes and mandarin oranges. This, I only started doing back in December/January of 2012.

It worked fine until he decided that he didn't like them in his bananas. Maybe that needs a little effort more in swallowing them as he needed to chew a bit and that made him bit into the bitter contents. So I stuck with mandarin oranges which he just can't simply refuse. 

From there, it was the whole capsule in half a slice of mandarin oranges and then I break the slice of mandarin oranges into three parts and one slice of mandarin oranges equals to three different capsules. 

and today, well, no more mandarin oranges !! YAY !! 

Most probably I would only let him swallow on the whole and plain like that when we are travelling but when we are at home, I am still going to give him with the bits of fruits so that he won't get scared of swallowing capsules just like that. HEY, even I get scared when I see 8 different pills staring me in my face daily.

I am just thankful and grateful that 'today' came. =)

Tuesday, August 7, 2012

Off rounds

Jaden's mood was pretty unstable.

He would have an upturned mouth, quivering ready to cry ... refusing to do his work and screaming his head off at his therapists. Lots of pinching, stubborn and the frequent pee-ing too. 

It seems that he has more pee than usual and have to go rather frequently, something which does not happen often. Its almost like he could not control keeping it in until he reaches the toiletbowl/potty. 

Of course, that took place yesterday after his last dosage of 5mg DMSA at 330pm. 

I also noticed that he has a fiery red ring around his anus, which I had made quite a big effort in clearing it all up before I embarked on this chelation journey and here it is, flashing me in the face the bright red ring! 

This is due to yeast usually, and that I can totally understand as he has been giggly during the chelation weekend. So, now, its back to combating yeast again before I go on my #Round2. 

Jaden has also been teeth-grinding these two nights, and extra loud last night. So I am going to retain his double calcium intake for about a week and see if the teeth-grinding issue would go away. 

There is a belief that if the kid is heavily metal-toxic, they tend to do better on rounds and then get a little cranky when they come off the rounds. So, no prize for guessing which group Jaden belongs to ...

Poo, however, was good so far. It should be in the number 3 category of the Bristol Stool Chart. *phew* Its always better out than in -constipation can make Jaden a difficult boy to deal with most of the time. 


Sunday, August 5, 2012

Andy Cutler Chelation Protocol #Round 1

Finally I summoned enough courage to re-start on #round 1 chelation for Jaden. 

Took me over almost a month and more to get my ass on dividing the doses, prepping my body and mind to be mentally strong enough to go through the difficult two dosings of the entire process. 

I was not worried about Jaden not wanting to take his doses when he is awake because I feel by now, after two years of asking him to come to me and getting supplements, medicine and bitter stuff shoved down mouth, he has learnt that its easier to quickly swallow it than to put up a fight with me. He never wins at that. Maybe not now when I still have the upperhand in parental control.

Like I mentioned earlier in this post, because we are just starting on our very first round, Jaden will only be taking 5mg per dosing every 4 hours for the next 72 hours. That would add up to 18 doses altogether. 

Minimum advisable hours to do would be 64 hours each time on a round. That is personally up to the parents as these kids are usually school-attending children and they have no choice but to do that. However, the ideal recommended hours would be 72 hours, and that is what I am doing with Jaden.

I have got my hands on a 25mg DMSA.

Many would be scratching their head over DMSA right now, aren't you? DMSA stands for Dimercaptosuccinic Acid. I am not going to explain further as there is always Wikipedia to do the job but to summarise it, its a chelating agent where it helps bind toxic metals in our heavily metal laden children. Research shows that most of the autistic (spectrum) children do have lead or mercury or both poisoning in their blood level. It is like detoxing our children from lead, mercury and some, even arsenic. 

Chelation is not a one off thing as these toxic metals do not get in there in a day, but was accumulated since don't know when so this chelating process would also take time to push these toxic out of the body. There are cases where some are completely 'recovered' and some, reaches a stage where nobody would once believe they were autistic and this is what I am aiming for. Of course, RECOVER is on my mission list, be it that this procedure might take a few years but if there is light at the end of the tunnel, I will march together with Jaden towards it. 

I would most probably do at least 5-10 rounds with just 5mg DMSA and then increase another additional 2.5mg to the 5mg. That is the step to take, it seems, as written in my book of AC chelation bible book -Fight Autism and Win. 

Then there will be ALA adding in, which ALA crosses the brain barrier and bla bla bla, but that is another story to tell next time when I start adding ALA to his DMSA but for now, lets stick with DMSA first. 

SO the story is...

We re-started our #Round 1 AC (Andy Cutler) chelation protocol on Aug 3, 2012. 

The first two days were a breeze through as I did not see any meltdowns, signs of fatigue or yeast flare-ups. DMSA are known to trigger yeast flare-ups despite one is on a anti-yeast protocol before, battling out the yeast. 

Jaden had two poo incidents, once on Fri evening and Sat morning, where it was mushy, mustardy, diarrhea-like, just non-watery though kind of poo. He took another dump on Saturday evening and it was well-formed by then, and it was in a rather healthy looking color -based on Bristol stool chart. I bet you didn't know that there was such a chart, didn't you? So did I, until now.

Yesterday, Sunday, nonsense started. In the evening, after dinner, Jaden went into his giggly, euphoric mode. That was when I started to panic. Yes, yeast army has arrived and started partying. His poo? Well, it came in two colors, well formed but one was nearly tar-liked in color. That could only mean bad news, indication of something not right inside there.

Other than being giggly and all last night, he did display some positive signs such as being a calmer boy than usual, much cheerful. 


Oh, I forgot to mention another downside, he was stimming much ore, flapping his hands and that also boils down to it being caused by yeast. YES, we parents like to blame em YEAST !!!

Before I started out this round, I was only scared of the two dosings that requires me to give it to Jaden when he is sleeping. Remember how I failed the last time round because he put up a fight with me the last time round on the second night of dosing and I have to abandon round? 

Well, it seems by my endless effort trying out various ways (during that one month break), I practiced trying to open his mouth when he is sleeping whenever I could and FINALLY, I think I may have found THE SECRET to it, without waking him up and also getting those doses in. I shared it with one parent I met up last night and she text me late last night saying it worked with her son too. 

*PHEW*

BUT do let me stress. Every kid is different. They have different sensitive issues, for Jaden, it was his lips. If you touch his lips, it will stir him up from sleep and make him angry and that was what that caused my previous abandoned round. 

Speaking of detoxifying this metals out from our children, some minerals get depleted too. That is why, during chelation, we crank up on their supplements. Jaden has to take double of his zinc, magnesium, milk thistle (just because I am a scaredy cat and wanna protect his liver all I can), calcium and probiotics. 

This is a 3days on a round, rest for 11days and then continue again on the next round. Each round is 72 hours, you should have get the idea by now though. Why rest right? This is because we need to let their body recover from all these detoxifying, build up again on their immune system and then go on a fight again. Even soldiers need to take a time out, to replan, regroup and refill their ammo before they can fight, right? Just like detoxifying, some will purge it out but you don't expect those purges to go on 24/7 for the next 365 days, do you? You would be jelly by then. So its basically the same concept. 

Some children's neutrophils are also lowered while on DMSA, so they need time to get their neutrophils to a safe range before they begin their battle again. That is why there are some that only does one round of DMSA once a month for their children. Its not about how fast you go, and that will give you success. Its how steady you go, how you do your rounds based on each child's health rate. Its a fight of course, a fight with time.. and that is all.. but aren't we all fighting against time for everything? Just that, this is rather a tough fight as each child's situation is different from another. Some might just need less than 100 rounds and they could be saying "Hallelujah", some may need more time and rounds. 

Whatever it is, the motto is never to give up ... 

One and half hours more to go before his last dosage of DMSA for this #ROUND 1.. and I can successfully say, 

YES I COMPLETED A ROUND ON MY BABY BOY !!!!! 

and damn, I deserve a good glass of wine to celebrate ! :)






p/s: This would mean I took another baby step forward. YAY !!!!!

Sunday, June 24, 2012

Observation

Although the AC chelation #round 1 was abandoned early today after my attempt to dose at 330am, there are still a few observations that I would like to share while Jaden was on the round.

Jaden was much more calmer personality wise, compared to his normal days of tantrum that sparks off easily.

I felt that his mind was clearer and that he understands more or finds alternate ways to communicate his desires/wants to us in a more effective way rather than just being whiny and pulling or pushing, which he usually would do.

Eye contact was superb and he seemed really loving, hugging and kissing both Mr and I whenever he can, or feels like it. It was as if he was doing it appropriately and according to how he feels, instead of just doing it when we ask for it. :)

I am not sure if this was due to placebo or it really happened but I do see positive improvements in Jaden when he was on the round. 

This concludes my observation on this FAILED #round 1 of our AC chelation experience. 



#Round 1 - FAILED / ABANDONED

Everything was going so well, until the 330am dosing on Saturday night. 

I don't understand, he took it so well the night before but last night, he put up a fight and only had a bit of DMSA in him but spit most of it out and I did not know what to do? 

Its not like any other supplement where they have it half, and half out and you can still re-feed them them supplement again until they take it all in.

So I decided not to take the risk of overdosing him and decided to abandon this round. So, the next time you see me saying I am on Round 1 chelation again, that is because this is a failed round, its not considered a round. 

Come to think of it, that I had just finally figured out the right dosage for antifungal for him after all the giggling episode from his third dosage and now, this failure from my side.

For now, I need to figure out the right trick/moves to give it to him without him even realizing and sleeping on.. gonna be rather challenging, this one for his mouth is so shut tightly when he sleeps, not to mention even after I make my way past his tight-shut mouth, I have to fight the battle against those clenched teeth. *sigh*

Even during the first half days he was on his round, he had displayed some positive behavior and he also seemed rather pleasant, he was even more aware, alert as you can call that and the eye contact, it was wonderful !!

I feel like such a failure like now but I shall console myself that I was very sick. Next round, I shall be more alert and 'tricky' during those night/early morning feeds. 

So, conclusion to my much-anticipated round 1 of AC chelation = FAILED !!!

Friday, June 22, 2012

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 !!

Chelation

Finally.. after nearly over a year of procrastination, I have finally cut up the DMSA into 5mg each for the coming next 72 hours.

God, please give me the mental strength to sail through the 72 hours easily with Jaden complying to taking the DMSA without throwing any fuss.

Got my other supplements ready on hand too that has to be double dosage from normal days. 

I can do this! 

For a better tomorrow, that is...