Thursday, April 30, 2009

Enhansa/Curcumin: Week 2

Notes in a series on trying Enhansa from Lee Silsby for my son, 4 yrs. old.

WEEK TWO

My Dosing Protocol
Day 1: One full cap (150 mg) at breakfast.
Day 2: Opened cap and dumped out enough to leave 2/3 in cap.
Day 3: Opened cap and dumped out enough to leave 2/3 in cap.
Day 4: Opened cap and dumped out enough to leave 2/3 in cap.
Day 5: 1 full cap (150 mg)
Day 6: 1 full cap (150 mg)
Day 7: Not sure (son took too many caps at once and spit them out, not sure if the Enhansa got in there or not!)

Observations
Day 1 of Week 2 (Tuesday): he woke up complaining that his eye hurt and was rubbing both. His left eye was swollen/puffy, but a wet washcloth held to it seemed to make him feel better. Also Day 1 morning he now has a "lacy" red rash on his face, particularly noticeable on the forehead and cheeks (see photos). I am amazed by this and tell him we're "getting the bad guys out!" I keep him home from school because I assume the school will think he has some weird contagion.

As Day 1 went on, the lacy red rash on the forehead and cheeks went away and now at night he has more of the hive-like small bumps that were on the back of his neck. They are now also on his face (faint, noticeable up close only), the front of his neck, and then his collarbone area. He said his eye hurt a few more times today; once around 2pm and then once tonight around 9 pm. I called Lee Silsby about the eye pain thing today and they said this can happen with high oxalates and to look at reducing oxalates in his diet. Tonight (Day 1 of Week 2) he is sneezing a lot and having a hard time falling asleep (he's up 3 hours past bedtime). He did fall asleep this afternoon, though, and doesn't usually nap so perhaps that's the issue. Lee Silsby suggested I back down off the dose just a wee bit, so tomorrow I will go back down to dumping out a bit off the top of the larger 1/2 of the capsule and might stay at that dose until the rash goes away before I try increasing. Another observation from today is that he was much more flexible and able to deal with disappointment/frustration. Usually it sets him off into a big tirade of stomping and yelling that it's "the worst day of his life" and "I don't love you anymore" but today he kind of got upset like a typical 4 year old might and then just moved on. It was really quite cool! Not sure if I should send him to school tomorrow or not. Might wait till morning to see what new bizarre-o rashes have started! :)

On Day 2 of Week 2 (Wednesday), he was fine enough for school. He slept poorly last night; taking a long time to fall asleep and coming into mom & dad's bedroom a couple of times (and eventually winning at that game). He seems to have stopped scratching his head as violently as he was before. The lacey rash is gone. Now his face, neck (front and back), and collarbone area are filled with tiny little bumps. They are skin-colored not red. They are not really noticeable until you look closely. They kind of look like each tiny follicle is raised up. Around his eyes and nose, it kind of looks bumpy like a teenager might look although not really red pimply-like. He says they itch, but I don't see him itching himself like crazy. They kind of feel like sandpaper when you run your fingers across them. In the morning they seemed more "active" or "new" and by bedtime they seemed more "dry" and like they had passed their prime. It will be interesting to see how they look in the morning. He also shows me that he has a few red "spots" on the back of one of his hands. He still has a runny nose although not nearly as much mucus as before. His left eye is still bothering him, and interestingly, he wanted the wet washcloth to press against it at approximately the same time as yesterday (9 pm). I don't know what happened at 2 pm since he was at school. I tried to get a really good look at it tonight but still can't tell what it is. It's kind of like a red pimple but larger with some white edges. It's not *on* the eyelid (like a stye) but is below it, near the inner corner. Maybe it is a bump that he scratched that got infected? I haven't seen any pus. The other thing I noticed tonight is that the lymph node behind his left ear is HUGE. He used to have these large nodules behind his ear when he was younger, and I always worried they were tumors. I remember pressing on them a lot to try to figure out what they were, and my son said his first "sentence" while I was doing that: "No head" he said. He hated it when I did that. Same thing is happening now. He has this huge nodule behind his left ear (nothing on the right) and he didn't like it when I touched it. Now that he is speaking he was able to tell me it hurts when I press on it. I believe this is some viral type thing, perhaps the Enhansa is ridding the body of some virus and so this node is swollen. I wonder if it is related that the node and the eye thing are both on the left side? This whole thing has also made me realize that at some point during our whole diet/biomedical journey, his nodules had disappeared. It was alarming to feel it tonight and so now I see how they have been gone for a while. I had even forgotten about that whole nodule issue until tonight! Behavior-wise he is very different, but in a subtle way. He seems much more compliant and agreeable with much less tantruming. He is happy and easily excited by things. He was happy going to school and happy to be picked up. In the car on the way home he said "I love school!" which is a new quote. Usually the best I get is "I had a good day" and often it's a slew of negative thoughts and mean-spirited things about how it's "the worst day of my life" and "I don't love you anymore." That is basically gone all of a sudden, to be replaced by ... "exuberance" is the word that comes to mind. I also notice he is more engaged and in tune. At dinner when my daughter started talking but then didn't finish her sentence, he waited a bit then prompted her to continue. Then when she finished, he questioned what she said. It was pretty cool. It's very subtle but I'm really noticing some different things.

Day 3 of Week 2 (Thursday): For second day in a row, he gets out of the car easily at pre-school drop-off, even when the teacher helping him out of the car is the one he used to cry about when we got her, and he used to tell me every morning he saw her that he didn't want her to get him out of the car. Now, for 2 days, he unbuckles his seat belt, gets his lunchbox and snack, and gets out of the car. Seems like a small deal, but, believe me, after almost 2 years of traumatic "getting out of the car" issues, this feels like a gift from the heavens! :) He also continues to be compliant and happy in the mornings, which I swear is new since starting Enhansa. Mornings used to be a nightmare, with the best of mornings having me walking on tiptoes to avoid a tantrum or meltdown or angry blow out over *something.* This, again, is a gift. Nice, peaceful, mornings . . . what a concept! :)

At night his eye is bothering him again, at about 8:30 pm, so we do the cold wet washcloth thing. He tells me it's just the left eye bothering him; the right eye is fine. So this makes me think the eye issue is related to this sore below his eye as opposed to a high oxalate issue, which I assume would affect both eyes. The sore thing under his left eye is more clear tonight, with white in the middle of it, so I'm guessing it's some sort of infected thing, perhaps from when he was scratching at the rash. I take a picture of him...he is doing a monkey face because I told him to open his eyes up wide and that's what he did. :) I tried to take a picture of the "sandpaper skin" feeling rash on his neck/collarbone, but you can't really see it; only feel it, so there is no picture. The spots on the back of his hand are barely there, like pinpoints. I Google "sandpaper skin" and do some research. Some say it is from a deficiency in Vitamin A. I think I have heard that Dr. McCandless does high dose vitamin A to get rid of measels in the gut. And that the measels "eats" the vitamin A which is why you need really high doses. (Warning: I am not an expert on this at all.) So my mind wonders if perhaps the Enhansa did something with some viruses (measels?) in his gut and so he got low in vitamin A and now has the rash? And now to REALLY make things interesting, at dinner we had beef stew with potatoes and carrots, and he was ONLY wanting the carrots. He ate all of his carrots plus all of my carrots plus all the carrots from my husband's bowl. I'm guessing he ate at least 1 full carrot for dinner. This website says "one carrot has 2025 RE of vitamin A, which is 203% of your Daily Value." Because my son has never craved carrots before, I am really starting to think that my little Enhansa/virus/vitamin A theory might be right. [or perhaps I'm making connections where there are none!]

The nodule behind his left ear is still huge and sensitive to my touch. There is a small nodule behind his right ear, but it's lower down toward the neck than this one.

Day 4 of Week 2 (Friday): The sore under his eye looks like it has "popped" or something, as the white is gone, and now it is just red, flat skin there. Looks like it is healing. The sandpaper skin rash is definitely better; can barely feel it. He's a bit grouchy this morning about going to school but transitions to breakfast easily and it's not a big deal. Third day in a row he gets out of the car easily in the morning and I even see him having a conversation with the teacher on his way into school. This is pretty amazing, as usually he just slumps in and doesn't even say hi or look at anybody; kind of like it takes all of his focus to figure out how to hold onto his stuff and get in the door. Today there was a spring in his step and it looked like he may have even been joking with the teacher.

At night he seemed really cranky and tired. Left eye red-ish on and off. Rubbing eyes. Itching all over. Like spring allergies (although he tested negative to environmental allergens). Runny nose is clear (was yellow before). Sneezing a lot; I don't recall him ever sneezing like this -- one after another. Used to be a one-sneeze kind of guy, now it's 5 or so in a row. Very weird. Gave him benedryl before bed; hoping it helps.

Day 5 of Week 2 (Saturday): Great day. We go to the mall and buy shoes. He is well-behaved and, although shy, interacts with the salesperson and follows directions. We then go to get his haircut and he is does an AWESOME job for the first time ever. He even lets them wash his hair, and he doesn't cry at all while getting his hair cut. Read this previous post about one of the last times we went and you'll see why this is so thrilling! :) It obviously took a lot out of him, though, to be so controlled, because when we got home he took a 3-hour nap! Today he complained about his eye again, but it was the other eye. The area around his eyes seems kind of dry/scaly (this is different), and near the inner corner of the eye it is kind of red. Dana on GFCFKids Yahoo group says this was a sign of yeast die-off for one of her children, if I recall correctly.

Day 6 of Week 2 (Sunday): Another very good day. Rash around the neck is gone. Eyes are still a bit weird-looking with the dry/red thing. He rubs them every now and then, and they look a bit puffy. There are some little bumps on the insides of his elbows. Behavior is wonderful. I fantasize about traveling with him to Italy. :)

Day 7 of Week 2 (Monday): He pees out of his pull-up this morning and all over the bed. (grumble) This is a yeast die-off sign for him, though, so that's good if that's what it is. We go to the dentist this morning, which has always been traumatic in the past. Like torture. He sits in the chair for the first time ever and likes going up and down. He touches the "toothbrush" with his finger, and holds the mirror and puts it in his mouth. But when it comes to the actual exam/cleaning, we have to resort to the old way of doing things (him facing me on my lap then leaning back onto a pillow in the dentist's lap). He cries and squirms, and it's awful, but it's actually not as awful as before, and he snaps out of the trauma pretty quickly after it's done, getting his new toothbrush and his toy happily. So, in my mind, this is a very successful trip! :) I must also note that, in addition to his overall mood and ability to transition improving, his speech seems so much better to me too. Not the number of words or complexity of words or sentences; it's just that he seems more interested in joining in on the conversation. And his speech is more ... conversational, if that makes sense. He is engaged in the conversation and he is doing lots of back-and-forth. It's not that he wasn't doing it before, but I just notice that it seems like there's more of it now. He also just seems happier; a lot less moody and grumpy. Lots more laughs and jokes and excitement.

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