I started giving Jaden his very first capsule of Humaworm today, and made him drink a lot of water. A lot !
I was warned about the die-off reaction, which might be worse than die-offs from antifungal but so far, so good.
He has pass motion for the day, *phew* which I was really praying hard that he won't have his usual constipation which had come and go these few days.
I even took photo of his poo, to document the journey and am still contemplating if I should post it up here. Hmm.. not a very good idea it seems? Might just make all my readers disappear then.
BUT, should I find anything out of the ordinary, then maybe I will post those pics up. Someone out there might just want to know what comes out after the de-worming med goes in, don't they?
Anyway, I gave him at about 5pm today, 30 minutes before mealtime as stated.
Soon, after I find him stable on 1capsule a day, I would prolly move it to 2 caps a day till I complete that 60 caps for a 30 day course.
Praying hard for positive outcome from this anti-parasite protocol since his eosinophils are at quite an alarming number.
So, this is my day 1 report. Everything as normal as possible.
Today would be our 3rd day on OoO, and while his pee is still quite yellow, not as neon as the first day as I am making Jaden down as much water as he can, I am still not satisfied with his urine colour.
Anyway, today I decided to cut down on his DMG, which he was taking 3 daily, I cut it to just 2x daily, once after breakfast and one after lunch and it seems that his hyperness toned down compared to the previous two days.
I was told Vit B might make them hyper, to be given with folinic acid to keep it down but since the boy is already taking B-Complex and DMG has Methyl-12 in it, I guess it only make sense that I cut his DMG and well, it shows wonderful results.
What worries me now is that he has not poo-ed since yesterday. Constipation? but he has been taking his digestive enzymes and magnesium glycinate as usual. So what could be the problem this time? I don't like it when he does not do his daily business. It means bad news to me.
Anyway, since my apartment management decided to shut the electricity down for some electric maintenance today from 9-5pm, I took Jaden out with me to run some errands and to shop for his ABA therapy toys.
We went to the petshop and got my rabbits two new cages. He waited patiently for me without attempting to runaway. :)
Then we drove to Ikano and there we started our shopping spree at the RM5 shop, toys'r'us, Popular and JustLife and boy, this is a rare situation where I do not need to hold his hands and he will just walk beside me, not even jumping or stimming. He was just walking nicely, well-behaved, not pulling out things or sticking himself to the floor. At times, he would just come and hold my hand. This, I dare do as there are not much of a crowd on a weekday. I would never let his hands go if the usual weekend crowd is there.
He was pretty calm, during the day. I used the word WAS because I just heard him scream at his therapist in the room. Not that calm afterall as Jaden usually put up such behavior to avoid new tasks or things he is not confident enough to do but once he gets it, he is pretty a good boy. :)
Today certainly got both my eyes opened wide as the little gush of pee coming out from Jaden was bright florescent yellow.
You did not read wrong. It was the same coloured as those traffic policemen's jacket. That was the colour.
Looked kinda alien to me, if you ask me.
Anyway, since today was the very first time I introduced his natural antifungal to him, Oil Of Oreganol (OoO) and of all the other supplements that he has been downing currently had not shown any difference in pee, so I guess this is the one that turned his pee into such a colour.
I did asked other parents if they experienced it, but I got a reply that it might be due to Jaden not drinking enough water.
Therefore, I shall check again tomorrow after I pumped him with lots of water.
Currently, we are doing 2drops x2daily of OoO. The smell is very strong, so I am guessing the taste must be really strong too because Jaden cried after taking the 2drops I dripped into his piece of orange.
He was ok when I dripped a drop each on to his meat though. I think I should just stick to drip OoO into his food instead of fruit instead.
I am not sure if its the Vitamin B that is making him a little hyper than usual or its the OoO doing its stuff, as his therapist commented that hes more jumpy today. As in he is jumping more than usual (one of Jaden's stimming actions) but temper and mood wise, Jaden is pretty well behave so well, he can go jump all he wants right now. As long as it does not affect any other area in him. So fast, already a die-off reaction? OoO that strong to him?
I was advised to keep the hyperness at bay, I need to top him with Folinic Acid which I am already doing that. I give him Kirkman Folinic Acid 800mcg once a day. Wondering if its already enough or should I give twice daily instead? Shall consult Dr Rina when I see her in two weeks. The experts say folinic acid is better than folic acid for some people. Well, the proof is here, as excerpted from the Kirkman product facts, "In some individuals, the use of natural folinic acid may be more beneficial than folic acid, because folinic acid already has attached four hydrogen and one methyl group, thereby shortcutting the complicated biochemical process. For that reason, some doctors are recommending folinic acid instead of folic acid supplementation."
Jaden is supposed to do epsom bath but I have yet to get him a big tub to soak himself in it. Toilet is a bit too small but well, since this is something that has got to be done, I have to find one that fits.
Speaking of things that I am worried about right now is in regards to his most recent blood test. His urea seems rather dehydrated. His DAN doctor mentioned that either that he was not drinking enough water or that might be a problem with his protein metabolism.
Do you know what protein metabolism disorder would mean to me?
It would mean that his body is unable to break down protein, therefore the ammonia pileup is going to be dangerous. It could mean liver failure, the liver failing to do its job to detoxify. ??!!!
Protein metabolism presents some serious waste management challenges for the body. When protein is broken down, one of the by-products is ammonia. Ammonia is toxic, so our bodies have elaborate systems for getting rid of it. Most of the detoxifying work falls to our liver. There, ammonia travels a multistep pathway featuring five enzymes that turn it into urea, to be excreted in urine. People with rare genetic deficits that interfere with the urea cycle often die in childhood. Other mutations, though, may be responsible for some problems in adults, reports the May 2007 issue of the Harvard Health Letter.
One in 8,000 American children has a genetic defect that causes one or more of the enzymes involved in ammonia processing to be defective or scarce. As these children start to consume protein, the ammonia begins to pile up. Treatment includes protein restriction, medications that sop up extra ammonia, dialysis, and possibly liver transplant. The death rate is high.
Urea cycle disorders are viewed as rare and primarily pediatric conditions, but there might be a whole range of unrecognized, genetically determined problems with protein metabolism experienced by adults. Some people may have mild mutations that compromise a gene’s function and cause slight symptoms. This may explain why one person eschews meat while another loves nothing more than a steak meal. Defects in protein metabolism may also explain why some people have bad reactions to high-protein diets like the Atkins diet.
and the risks is crazy, making my heart skips a beat each time I read it.
High numbers of eosinophils (eosinophilia) are usually associated with allergic diseases and infections from parasites such as worms. A high eosinophil count may be due to:
Crazy isn't it? At only age 5 ... oh boy, I am going to start by giving him his de-worming medicine which I bought from Humaworm. From there, after finishing the antiparasites, I shall do another re-test and more test if that means I can prevent or combat whatever that is coming Jaden's way. Nothing is going to stop me from making him as healthy as he can get.
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.
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 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
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.
Candida.
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.
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.
