Tuesday, July 28, 2009

Obsession or hyper-focus? Mother Warrior Mode!

If you are reading this and you don't have a child on the spectrum or one who requires biomedicine, you probably wonder what all the hype is about. If you are reading this and you DO have a child in one of these categories, you know where I am going with this, don't you?

I hear this often..."But it's just one, can one really hurt him?" and "Does he really need all of those pills?" The perception of mothers like us is one of obsession, we research and we fill our kids with gobs of supplements daily, we restrict our kids from chlorine in swimming pools, we avoid sugar, artificial colors, preservatives, wheat and MILK,....why? Is this really necessary? Don't kids need milk? No they don't, and yes this IS necessary. The only way to recovery is complete...well, you might like to call it obsession, but I prefer hyper-focus.

Mainstream doctors don't get it, they don't get us, they don't get our kids. And why is that? It's simply, because they haven't studied biomedicine. Would you go to a heart surgeon for GI problems? I think not!! My son has quirks, yes, and so do I, BUT he also has an overgrowth of yeast and bacteria, sensitivities to a plethora of foods, high oxalates, malabsorption, vitamin deficiencies, sensory issues, the list is lengthy and I could go on explaining the symptoms I used to see on a daily basis (in fact, just read the beginning of my blog for that), but I would rather tell you what this hyper-focused mommy-warrior mode does for us. Plain and simple, it turns a very unhealthy child into a healthy one with a bright future. What mother wouldn't do this for her child, if she knew it was possible? I don't see it as anything other than necessary!

The medical community forces us to this, we need to help our kids by researching, talking to other moms, trial and error, meds and supplements. The other thing that drives us is that we are told that there is a window of opportunity when it comes to recovery and we are right in that window with Grayson now. The best and most permanent results are seen when treatment is started between the ages of 1 and 5. Beyond these years and we risk a slower recovery and perhaps a less permanent recovery. This is called "Managed Recovery" in our world. Many of our kids will actually require this and it means that they are healthy, with their previous diagnosis removed (IE-autism, ADHD, PDD-NOS, etc) however, it's the diet, supplements, chelation that are possibly continuously required to maintain this level of health. It has been described as an autoimmune disease and it's believed that it will be renamed in the near future. We wills top calling these symptoms autism and start seeing them for what they are...autoimmune dysfunction.

People who meet my son now think he is just perfect, and truly, I hear that word a lot with him..."perfect". No one is perfect, but to me as a parent, I agree, he IS perfect, however, he is far from healthy and the reason he appears "perfect" to others is because of everything I do. My job as his mother is to make sure he is given the best opportunity at a healthy (and fun) life.

So I repeat, is this an obsession? Perhaps. Is it necessary? Absolutely!

Tuesday, July 7, 2009

Chelation - round 8 - added supplements to capsules

I am so glad we stuck with the ALA. When we first added it to the DMSA, I was terrified by the results, the incredible increase in stimming and negative behaviors, but we stuck it out, used it again in smaller quantities for two more rounds and now he is doing fine on it. The last round was a little rocky, emotional, but not nearly as bad as the first ALA round. It could be that we have also been using prescription meds for the yeast and bacteria which chelation will ultimately flare up. So other than being utterly exhausted with the round the clock waking, this round is going so smoothly! He is on his last day of chelation today and we are seeing some emotional outbursts, but up to this point, he has been wonderful! NO stimming at all, no sensory seeking, and even when he gets emotional, he is recovering himself pretty well! I might be able to credit his level behaviors to the fact that I added his calming supplements into each dose of chelators. When I split his capsules, I also added an additional 250mg of vit C, vit B, 100mg of Milk Thistle, 180mg magnesium and a 1/4 of a capsule of ACE daily. The C and B help with the stress ont he body, Milk Thistle supports his liver, the magnesium is calming and necessary for the absorption of many other nutrients and the ACE addresses the adrenals which are often fatigued during chelation. So needless to say, I will continue this method of dosing going forward.

Saturday, July 4, 2009

Seeing the WOWs, but what did it?

We are seeing AMAZING changes and we are even starting to see some consistency, things were all over the place before. I just can't put my finger on which was the major "wow-factor" or if it was a combination of things. Here is what we have done recently, and in this order:

1-Started Flagyl and Diflucan (based on yeast and bacteria markers in Organic Acid Test), also started SeriPhos for anxiety.

2-Added artichoke extract to the milk thistle we were already using to add more liver support (trying to address his whole body itchiness with either anxiety and/or liver stress as the cause)

3-Added OLE daily (200mg)

4-Started Nystatin once a day

5-A gland that has been raised on the side of his neck since he was a year old (and I mean VISIBLY raised) has gone down significantly, some days it's not even palpable! This is major.

6-Increased buffered Vit C to about 1000-1200mg a day to help with irritability (we had reduced it for oxalate issues and found him to become increasingly more irritable without the high levels of C)

7-Noticed his tongue was spotted and almost coated looking and pimples on rear (probably related to the die off from gut bug meds)

8-Stopped giving calcium (suspecting hypocalcemia), as a rial, just giving 360mg buffered mag oxide instead

9-Increased Nettle tea (about 1/2 cup a day) for calcium and possible allergies (we had used this before in smaller quantities)

10-Stopped first ten day course of Flagyl and Diflucan

11-Added 1/4cap of ACE (Adrenal Cortex Extract) for possible adrenal fatigue (we started seeing major changes about here, literally immediately)

12-Increased Milk Thistle by at least 200mg per day for itching, seems to have helped, but itching is still there throughout the day (still can't quite figure this out, but may be related to toxic release)

13-BMs have FINALLY gone from a very loose, strange consistency and foul smelling to NORMAL and not smelly, still undigested materials in them though (nuts, buckwheat groats and sunflower seeds seem to remain undigested)

14-OMG, as I was writing this, I noticed a crazy rash all over his upper torso! It looks like chicken pox! They are evenly spaced little pimples, he said they don't itch. They go from his collarbone and back of the neck to his mid-torso, they are not on his arms, legs or face....We just started the OLE 11 days ago (it is a top rated antiviral) and strangely, that coincides with when we saw the gland go down! The gland originally popped up right after his 12 month vaccinations, it came with what looked like a mild case of the chicken pox then too! But it also coincides with when we started the Nystatin, so it could also be from die-off of gut bugs. We haven't given him a bath, put any lotions or anything new on him either.

The point we are at now....verbal stims are almost non-existant except when he seems to need some OoO (3 drops), Biotin (20mg) and 1 No Fenol for yeast, we give this 2-3 times a day, we haven't had any meltdowns in DAYS, the anger is gone, the anxiety is non-existant, he is silly and talkative, almost hyper, but more appropriate kid stuff and he is listening well when we ask him to calm down, defiance has subsided. He must be feeling good. He goes to bed around 8pm and wakes no earlier than 8 or 8:30am, even 9-9:30am some days (and this is a child who used to wake a 5:45 before chelation!!). He is still itching, but now I can't tell if it's habit, a stim, yeast, related to allergies (he has no other signs of environmental allergies), or just plain die-off side effects. Between cleaning out the liver, killing off the gut bugs and chelating metals, he has a lot that could be coming from his pores. This is the first time in almost a year that we have had consistent days like this. We will be going onto another course of Flagyl and Diflucan. Once we go off the Flagyl, we will retest with another OAT (Organic Acid Test) which our DAN! might have actually gotten covered by insurance!!! WOO HOOOOOO!! (happy dance)

These have been the biggest WOWS we have had. In fact, yesterday we had a play date with two boys we haven't seen in ages, he was FABULOUS the whole time, playing nicely, sharing (wow), laughing. The play date we had before this last one was one disaster after another, he hit the boy, he cried, he lost his temper, screamed and had no patience the whole time, grabbed toys left and right, but this was just a few days into his meds so I am sure we were dealing with die-off.