Fluconazole #day 5

Ok. The antifungal definitely has something to do with his sleep patterns and also appetite.

Usually, he will have to have his full 8-10 hours of sleep at night but lately, its been about 5-6 hours only. 

Today he woke up at about 930am again but I was too tired to wake up for him, so I chose to ignore him. After an hour of sitting and playing by himself, he slept back. Last night, he only fell asleep at about 5am. Which meant that I also got to sleep after Jaden.

Jaden's appetite is so bad that now he is eating 1/3 of what he usually eats to be full. Mealtime usually end up making me look like a bully or a monster trying to force-feed a crying child. I try my very best to make sure he finish all the food that I have taken for him because I know his usual intake limit and now, so little, yet when he can't finish it, it is quite alarming to me. 

Instead of wanting to eat food, Jaden is practically picking up metal, books and plastic to bite and munch on. Did something trigger him to do so? He bit of a chunk of his book and I have to pry it out from his clamped mouth before he swallowed it. All the bits of plastic and whatever chemical in the paper! UURrrrgghh! So frustrating! 

Just only, I have to practically shove the spoon inside his mouth when it was wide open crying murder. It might have been quite a traumatic sight for Mr if he was around but I am not going to give in each time to Jaden everytime he acts up. Then, when will he learn his limits / boundaries when he knows that we will always give in? I am definitely not one to do so. Jaden needs to learn who is the alpha. 

Attending to Jaden without Mr at home is much more easier. Even when Jaden loses temper, and simply throw himself about because I would give a tak-apa (don't care) attitude and Jaden will quiet down after a while. If the father is around, all hell break loose. The father can't take the wailing, get stressed out and then start losing it and I will have two pairs of testosterone going crazy in the house. 

Today I tried spoon-feeding Jaden his antibiotics and he took it in nicely. So I guess no more adding to juice. Yay! Tomorrow its on to the zinc supplement to be added into the supplement menu. I wonder how it will taste like? I hope its tasteless and will easily blend in with his juice or fruit. 

Temper issue today is pretty fine. Just the wailing during dinnertime but other than that, everything is normal. 

Poop today was just once, but big. Light brownish soft looking with these tiny white strains (that look maggot like) in them. Same as his previous stools. Are those yeast he is pooing out?

-end of day 5 update-

Fluconazole #day 4

Last night, when we were about to sleep, his hands and cheek felt warm. It looked as if he has slapped cheeks but then again, his body temperature seemed fine so I let him drink more water and we slept without the aircon on.

Today, his temper issue seems fine but his appetite did not seem fully resumed yet. He refuses to eat unless he is really hungry and that, too, not as much as he ate before.

Jaden woke up quite early today. He woke up at about 1030am, something he usually don't do. Hmm? Sleep issues? It seems he can't sleep longer than 5-6 hours a day now since he started his antifungal. Shall observe tomorrow again.

He pooped twice again, soft mustardy looking again and this time, instead of smelling foul like what it usually does, today, it smelled kind of sweet today. Instead of giving him banana juice, which is like 2-3 teaspoonfuls mixed with water to go with supplements which I have been giving him for the past 3 days, today I gave him apple juice. Same 2-3 teaspoonfuls into the cup, diluted with a bit of water, mixed with his supplements and antibiotics. Was it the apple making it smell sweet? or was it the bits of plum he ate to wash down the fishy cod liver oil?

Jaden is not as obedient as he is, like adhering to simple instructions like "Come!" but he definitely knows what he wants and find all ways to get it.

Other than those mentioned above, there are no major update issues for #day 4. *phew* 

-end of day 4 update-

Fluconazole #day3

I am suspecting that the side effects of Diflucan is starting to kick in.

Today, Jaden is acting very unreasonable.

He throws tantrum for no reason at all, kicking his father, refusing to eat and throwing himself about which I witnessed a somersault that nearly had me charging at him with the cane. Lets just say he fell on his head AGAIN.. today .. after that fall last night, and he still don't learn.

He was perfectly fine in the morning. It all started when we came home from grocery shopping, and the boy suddenly burst into tears in the car on the way home. For no apparent reason, unless he has his own reasons for doing so.

Then he kicked his father, and throwing himself about at home. 

Jaden seems to be losing appetite. He refuses to eat his lunch and also dinner but of course, I did not let him off the hook that easy. It was by force, I made him finish at least a few mouthfuls that I think would suffice to last him till the next meal.

He passed motion twice today, I am not sure if he will still have another go but for the earlier two times, it was mustardy yellow and big ones. 

Today, I noticed that he can't stay still. He can't stay still for a second enough for me to feed him his cod liver oil, shaking his head about -doing the shampoo ad style (to the extend of pissing me off that I just want to chop off his locks there and then!) giving me the jelly knees. He just would not stand straight for a second enough to gulp his cod liver oil. I have to ask Mr to come help me hold him while I direct the spoon inside his mouth.

At the moment, he has just finished his rounds of diflucan 2x/day and antibiotics 3x/day. He is being very vocal in his own blabberings, spinning around in the living room and jumping. Yeap, the stimming seems really bad right now and his obsession with switching on and off the light switches is also quite bad. He knows he is not supposed to do it yet he still wants to test our patience.

I am not sure if he is getting all giggly or he actually finds the mouse on tv biting off the moon funny but he was actually looking at the tv while laughing at that part.

He also seemed a little spaced out today and he is avoiding eye contact again. Not completely but as someone that is observing him daily, it seemed that today he is avoiding eye contact.

If this is the die-off reaction kicking in today, I dare not think of the remaining 11 days. 

-end of day 3 update-

Fluconazole #day 2

Surprisingly today, Jaden woke up at 9am but since he only had about 5 hours of sleep, I chose to ignore him and knew that he would fall back asleep after a while.

True enough, when I woke up at about 12pm today, Jaden was already snoring back, with his legs on my head. *sigh* I wonder if this has anything to do with the diflucan -disturbing his sleep cycle.

Anyway the boy slept till about 4pm before he woke up for real, feeling fresh. So, he does need his 10-12 hours sleep daily after all.

Right now, I have already given him his #day2 of diflucan, two dosage each for the antifungal and antibiotics. He still have one remaining 2.5ml of antibiotics left to take for the day.

His first poo for the day looked blackish again and it seemed like he had to push really hard to get it out. So I guessed it must have been quite hard and it was only one medium lump of poo.

His second poo was right after his big lunch of pork chops, mash potatoes and several long beans. He had a lot of poo in the second round, this time yellow mustardy looking but not loose kind.

Behaviour so far, seemed ok. I am not sure if he has finally learnt to at least point to the food he wants or he just wants to touch them but he sure did point to the pork chop when he wants me to feed him that instead of the mash potatoes.

He wants to feel every texture on the floor, wall, anything that has texture and lately, he is obsessed with switching on all the lights. 

Jaden seems to understand more things now, or is much more aware of his doings. Whenever either the Mr or I "HEY!" him or say no, he will be hesitant to want to do what he does, unless he feels rebellious and thinks he can get away with his smile, and then proceed to do what he intends to do.

He knows who is the strict one in the house and dare not really defy my instructions but he sure knows he can bully his father.

I assume his level of understanding things are actually quite ok. It is just that he has this thrill seeking habit now and of course, he fell down the couch and bang his head on the floor when he was doing his walking on the top of the couch despite our shouts, threats and saying NO whenever he attempts it.

Of course, he wailed but was back to it again the very next second he forgot about the fall.

Temper today, from the time he woke up till now, seems relatively normal. No major meltdown or whatsoever.. *touching wood I don't jinx it by saying out loud**

Conclusion for #day2 of diflucan seems to be going fine and I hope it stays that way...

-end of day 2 update-

Fluconazole #day 1

Today, Dec 27 is the day I started giving Jaden his first antifungal pills. Dr Erwin gave us fluconazole, to be taken twice daily, one 50mg capsule each time, followed up with the antibiotics -to be fed 3 times daily, 2.5ml each feed.

I had my reservations about giving Jaden antifungals as it was said that the risks involve is liver scarring. So I did my asking around, research and finally an email carrying my worries about the antifungals to Dr Erwin and I got reassured that it would be fine and that the die-off reaction would go off faster than I would see in herbal antifungals, although he mentioned that I could give those a try too. 

Anyway, some parents I talked to reassured me too that their child was fine with the first round of Diflucan, nothing to be really alarmed of, except to look out for liver enzymes and thyroid function levels after the round. It usually affects after the second round, which I hope I don't have to do so. Should I need to do second round of yeast killing for Jaden, I would probably opt for the natural antifungals then.

Dr Erwin did warned me about some die-off reaction that might get severe, Jaden being worse than ever but touch wood, today has been quite normal except for his occasion demanding cries getting me to switch on his DVD for him. Other than that, he is probably doing what he does usually. 

The only thing I noticed is that his poop looks blackish / wettish diarrhea like (not loose stools but more to like glutinous looking). He pooped 3 times today. Well, he has yet to have his dinner so maybe there will be another round of pooping but so far, its all looking normal.

I was actually not looking forward to feeding the antifungals because I was anticipating resistance from Jaden but well, he ate it down together with his food without seeming to realize I pop the capsule in there. As for the antibiotics, I inserted it together with his diluted juice. At this very moment, he still have one more round of antibiotics to go and this antifungal issues will go on for two weeks.

Jaden did something I thought was a step forward from what he usually does. Today, like any other normal days, would ask me to pop his dvd in by pulling / pushing me towards the dvd player but today, he took the DVD and put in into my hands before pulling me towards the DVD player. He sure knows how to convey what he wants.

Lately, Jaden has been seen trying to lick, bite on metal stuffs, chewing on wires. Is it because of the lack of metals in him we have been trying to hard to get rid off in his body? Jaden sure has a looooong way to go to chelate the metals out of his body but we are doing what we can right now to eliminate these killer stuff from him.

-end of day 1 update-

Tempers and Tantrums

I am  not the only one. I believe mothers out there in my situation share the same experience as I do.

I am known to be quite patient compared to most of my friends but there are several things that ticks me off in an instant and changes me to a monster that I can be quite scared of, even of myself. I guess the rage within is an evil thing lurking just waiting to be unleashed.

As you all would have known, I have started Jaden on all his 4 supplements and getting him to eat them all is not an easy job. It means lots of pushing, running away, me chasing, trying to force it down him and also spillage on the floor and of course, all these with lots of crying from both of us -Jaden crying murder and me crying because I feel as if I failed in being a mother. 

AND that is only 4 supplements. 

Just recently, I had two encounters that really got me scared of myself.

One occasion when I was trying to feed Jaden his cod liver oil and he was sitting in his babychair. We were pressing for time to go out to run Mr's errands and the boy decided to refuse his cod liver oil. Of all days, of all places... right at the carpeted area, he pushed the spoon out of my hands and everything sprayed everywhere. 

Anger got the better out of me and without a thought, instantly, my hands went down to want to whack Jaden. Of course, I knew what angry strength could do, so instead of whacking down on Jaden, I vented my anger out on the baby chair and two of my fingers bruised INSTANTLY! It hurt me so much, physical pain of course but that also reminded me of what my strength could have done to the little one should I have hit down on him.

The second occasion that got me crying and having to get out of the house just to cool down was due to Jaden refusing his supplements. As usual, the boy has to take his digestive enzymes before food but that one day, he just refused it and everything spilled everywhere. Not wanting to give in to his demands, I pushed it in his face, forcing him down which resulted in him crying like a banshee, tears and mucus running down his face, with occasional slaps on his arms by me. I was adamant that he drinks it up because it is supposed to help him digest his food inside his guts which is already not working well. By not consuming his digestive enzymes, the food that his body is unable to digest will soon leak out to his blood stream and be toxic. 

The father could not bear to see his son crying away like that and pushed me away from his son. There was nasty exchange of words which left me really heartbroken by what the small and big one has done and said. 

It is at times like these, I feel like giving up. It is at times like these, I feel that I am not appreciated at all for my doings, in wanting to make Jaden well again. It is at times like these, I know that no one else would be able to keep up the supplements timing like I do and make Jaden down them all, even if it might be a little traumatizing. 

I washed up, I got out of the house and drove out. I blanked my mind completely, not wanting to feel anything at all. Sometimes it gets so dejecting, I just want to let it all go but I know deep down, I can't. Because he is my son and I want to see him recover. I want him to recover, at least 80-90% neurotypical. 

I can be a monster mother.

His first four

We started Jaden on his supplements given by Dr Erwin right after he recovered from his fever. We were given these four supplements to start off with, which is actually recommended to start off with a few supplements before slowly going full-fledged so we will know which supplement Jaden might be allergic to. 

The first supplement we gave was the cod liver oil. Cod liver oil is actually good for everybody. It is just that some out there on the market, might have used some fish that might have some mercury in them and this is a big no no for children like Jaden. We are trying to eliminate all sorts of metal from his life, in order to do so, we have to choose only the best cod liver oil claimed to be sourced from fishes that are at their minimal exposure to such poisonous components. Dr Erwin gave us the Möller's Tran Cod Liver Oil. 

So far, well, my journey in trying to feed him the cod liver oil has been going quite smoothly with a few bumps on the road after I took heed of Chris's advice by putting bits of fruits on top of the spoon and quickly letting him gulp down before he realizes anything but now, I guessed he figured out my trick and sometimes will just clamp his mouth shut so tight, it really needs a few minutes of coaxing, some smelly fishy oily drips on the floor before I can get him to gulp it all down. *sigh* This poster here really depicts the situation well. 

 

Translation: “Not the easiest thing to give, but the best thing to get”.

Picture by the awesomely talented Jill Greenberg.

Next, I started giving him the Digestive Enzymes. So what does Digestive Enzymes do? Digestive enzymes are complex proteins that aid the digestive system by carrying out chemical changes in the food ingested. Digestive enzymes need specific pH and temperature to become chemically active. The Digestive Enzymes that Jaden is consuming at the moment is the Houston Peptizyde Multiple Protease (90 capsules), 3 times a day before food. 

 

So every morning when he wakes up, there will be juice ready for me to open a capsule to mix it into the juice. Mind you, juice meaning three-four straw sips of juice only, enough just to get the whole capsule into his tummy. On days I think I might get lucky, I cut the fruit, dig a hole in the middle just nice enough to fit the whole powder from the capsule in and let him eat it all. Of course he will spit it out but I make sure he eats everything he spits out until he is done with that small tiny bite size of fruit. At the moment, the instructions given by Dr Erwin is to give him 3 times a day but I can also gradually increase it to 5 times a day. Its just that trying to feed him 3 times a day is already a struggle, 5 times??? Well, if that is what it takes to get him recovered, I will do it...

Of course, whatever we eat or do will have side effects. If not, there won't be the cause and effect theory right? Well, there are side effects to taking Digestive Enzymes too. There are certain digestive enzymes side effects that may be experienced by the user. The digestive enzyme side effects may be seen for a few days after you begin to take them. It is just the body's way of adjusting to the dose of enzymes. The digestive enzyme side effects that are commonly seen are as follows: 

Diarrhea / Constipation / Stomachache / Nausea / Bloating / Gas / Loss of Appetite / Headache / Fatigue / Dizziness

So far, I think the only side effect I see is that Jaden has been burping quite a lot, a little tummy bloatness and thats about it. Maybe sometimes in a day, he poops 3 times a day, 2 times will look kinda diarrhea-like, soft and mustardy yellowish colour but then again, that might also be due to the side effects of the probiotics, which i am writing about below.

The rule says to feed this before meal too, but other parents have told me that the digestive enzymes would digest the probiotics and then, it defeats the purpose of giving him the good bacteria so I feed this two hours after his meal. This too, I mix into the juice and let him sip it all up. I am getting really good at twisting and opening up the capsules now. He only eats 2 capsules a day because too much probiotics might also cause underlying medical issues. He takes the Klaire Lab Ther-Biotic Detoxification Support probiotics.

In rare cases, they may lead to mild digestive problems like flatulence, bloating, diarrhea and abdominal pain. If probiotics are taken in excess amount, there are chances of developing infections that require medical attentions. 

In case of people having an underlying disease or a compromised  immune system,  probiotics can cause potential health problems. In fact, these individuals are at a higher risk of developing infection after the use of probiotics. Symptoms such as bloody stools, skin rash and fever are indications of intestinal infection. 

In addition, probiotics may disturb the normal metabolic processes and autoimmune responses of the body. According to medical studies conducted, there is a possibility that probiotics may interact with immunosuppressive drugs, leading to life-threatening conditions. Hence, those who are on immunosuppressive medications should strictly avoid probiotics. 

Sends shiver down your spine, don't they? 

  

Last but not least, for now, this is something he drinks without pushing me away. I mixed 1/4 teaspoon of Awakening Spectrum powder by Metabolic Maintenance into his juice and just mix it till it blends. Supposedly it has no taste or smell, so the boy just laps it up like how he would drink water. Awakening Spectrum is actually multivitamins.This, I have to feed him 3 times a day after meal.

This specialty formulation contains the nine most commonly prescribed amino acids and vitamin/minerals for autism. They synergistically act as a GABA agonist; symptoms associated with hyperactivity of the nervous system, including hypersensitivities, delayed speech, anxiety, and insomnia may be corrected by the increased production of GABA, serotonin and melatonin. The amino acid combination of 5-HTP, Theanine, Taurine, and Lysine, in conjunction with P5P, Methylcobalamin, and Magnesium, may help slow down an overactive nervous system.

So there, these are currently what I am feeding Jaden at the moment. I guess, we have to wait till my next round to Dr Erwin to see if Jaden needs to add on more. You know, some children consumes more than 20 different types of supplements daily? some Vitamin B12 daily injection shots too... I am so not looking forward to that just yet... and there are some things I am still considering on giving Jaden because once you start on these meds, you don't stop. You go all the way if you want to see improvement.

Quoting from one mother I talked to, "its just like cancer patients. If they say you need to do 10 chemotherapy to see results, and you only do 5 and then you bitch about not seeing results. Whose at fault right? So its the same with biomeds, or the hours to put in for therapy sessions".

And yes, the therapy sessions is what I am going to blog in my next entry.

In conclusion, did Mr and I see any results / improvement in Jaden's journey at the moment. Well, since we got him on a strict GFCF diet, he seemed to look at people more and a little more aware of what is going on. Eye contact is still fleeting but at least he do pause a while to look at you in the eye before doing his thing again. Slowly but surely ... that shall be my motto!