So, Demi's gluten free, casein free (GFCF) now (mostly).
I knew it was something we should try, but I just didn't want to because I thought it would be such a pain in the arse.
I talked to Anjellica, who recovered her son from autism (listen here). Something in the conversation really convicted me - I really needed to at least try it for Demi's sake. What if it DID make a difference? I owed her the effort at least.
So, I made a few tentative steps - got some rice milk, read some labels. I talked to Anjellica again specifically about the diet and supplements she used. I thought in terms of what she could eat rather than what she couldn't. I discovered a friend in corn and anything corn-based (tortilla chips, corn tortillas). Potato chips (Lays) - typically only three ingredients (and you actually know what they are!). Hummus or salsa (for dipping those tortilla chips). Any meat, fresh vegetables, fruit. See? Lots of stuff!
It really has been considerably easier than I expected. However, I only went for GFCF. I did not bar soy and sugar, as did Anjellica. I'll get there when I get there. One thing at a time. Surprisingly, Demi readily accepts the reason "it will make you sick" when I tell her she can't eat something, even something she's eaten numerous times before. Perhaps it helps when I explain to her that a baby-hood friend of hers also can't have milk (cheese, butter, cheetos, etc) because it will give her an ear infection (a story that was quite true). And perhaps it helps that we are currently struggling with that ear saga (part 1, part 2) so she knows firsthand what "sick" will mean. I have been ecstatic with her acceptance of it all.
So, she eats oatmeal (Quaker) or Rice Krispies (HFCS- not good, but not gluten - which evil is worse) for breakfast. She might eat a ham/mustard "sandwich", using corn tortillas for bread. We typically eat meat/chicken/fish cooked at home, along with frozen vegetables, for supper, which works for her. We don't eat a lot of fast food anyway, so I'm learning how to navigate that land-mine.
Tuesday, February 19, 2008
Monday, February 18, 2008
The Slimy Ear
How pleasant! Attempting to clean slime out of an ear while it keeps slipping off the q-tip. Yes, a lovely image, I know.
I've mentioned Demi's ear infection saga before, although I was surprised I hadn't related the whole story. Last month, her ear started leaking again. It thought it was another perforated ear drum. This time, we got to the Dr a little sooner, so there wasn't as much fluid in the ear. They dx'd it as Swimmer's Ear, since the ear drum did not show a middle ear infection. (Ok, that's good!) They gave us the same ear drops as before to use for 5 days.
The leakage continued as we used the ear drops but seemed to subside, so I stopped the drops. A few days later, the leakage was back. Perhaps I didn't use the drops long enough? I continued them for longer; it seemed to subside; I stopped; it returned.
Recently, I read some posts on the awesome Kabuki Support Network that I follow daily about fungal ear infections. One mother described an infection that "leaked slime down his neck constantly" which sounded exactly like Demi's issue. It certainly didn't look like any swimmer's ear that I had ever heard of, since it drained constantly, coating her hair, cheek, and neck at night (until we stuffed her ear with cotton 24/7).
After going online, I learned that the ear drops used to treat Swimmer's Ear could actually make a fungal infection worse, which also coincided with Demi's symptoms. It also said that 95% of fungal ear infections responded to standard OTC athlete's foot remedies. We'll try that for a bit, along with bumping up her anti-yeast protocol in general, and see what happens.
I've mentioned Demi's ear infection saga before, although I was surprised I hadn't related the whole story. Last month, her ear started leaking again. It thought it was another perforated ear drum. This time, we got to the Dr a little sooner, so there wasn't as much fluid in the ear. They dx'd it as Swimmer's Ear, since the ear drum did not show a middle ear infection. (Ok, that's good!) They gave us the same ear drops as before to use for 5 days.
The leakage continued as we used the ear drops but seemed to subside, so I stopped the drops. A few days later, the leakage was back. Perhaps I didn't use the drops long enough? I continued them for longer; it seemed to subside; I stopped; it returned.
Recently, I read some posts on the awesome Kabuki Support Network that I follow daily about fungal ear infections. One mother described an infection that "leaked slime down his neck constantly" which sounded exactly like Demi's issue. It certainly didn't look like any swimmer's ear that I had ever heard of, since it drained constantly, coating her hair, cheek, and neck at night (until we stuffed her ear with cotton 24/7).
After going online, I learned that the ear drops used to treat Swimmer's Ear could actually make a fungal infection worse, which also coincided with Demi's symptoms. It also said that 95% of fungal ear infections responded to standard OTC athlete's foot remedies. We'll try that for a bit, along with bumping up her anti-yeast protocol in general, and see what happens.
Thursday, February 14, 2008
Mushroom-based Superfood - H1x1
Waiora is introducing a brand new product next month. Check out the video above for details. AgariGold is not yet available - not until March 13th. Research H1X1 and NK cells.
More details: Zeolite Wellness Team Z and Waiora's site
Tuesday, February 12, 2008
New progress
We had a new family in the neighborhood this school year. Not new anymore since we see them everyday. One child in the family has some minor quirks, sometimes trouble in school - mostly handwriting, and the mom mentioned medication.
I have mentioned NCD the possible good it could do. She said she might be interested, but didn't really seem to be. I suspect she was just being polite to me. Unfortunately, doctors/insurance/schedules conspired such that she her supply of medication for her child has run low and she needs some other alternatives.
Last week, she finally tried NCD. I advised her to start very slowly, just adding one drop each day. She has now worked up to 5 and 5 (day 7), forgoing a late dose to avoid any sleeping issues. Just today she said that she hasn't had to remind him to do things in the morning. A small gain, perhaps, plus a modicum of extra peace on busy mornings. She has seen nothing negative thus far. We'll see how it works out...
I have mentioned NCD the possible good it could do. She said she might be interested, but didn't really seem to be. I suspect she was just being polite to me. Unfortunately, doctors/insurance/schedules conspired such that she her supply of medication for her child has run low and she needs some other alternatives.
Last week, she finally tried NCD. I advised her to start very slowly, just adding one drop each day. She has now worked up to 5 and 5 (day 7), forgoing a late dose to avoid any sleeping issues. Just today she said that she hasn't had to remind him to do things in the morning. A small gain, perhaps, plus a modicum of extra peace on busy mornings. She has seen nothing negative thus far. We'll see how it works out...
Red Dye 40
I've heard about and read about the possible negative impacts of various dyes, food coloring, additives, etc. I knew it was probably in things that we ate and drank, but I never went looking for it. This is another instance of why this whole process is a journey for me - I hear about something, I learn about it, and then, finally, I get around to doing something about it.
Yesterday, I met a woman with a 15yo autistic son. After years of using medications, she's trying "alternative" means and has seen some results in less than a week. One particular problem she had with her son was meltdowns after school every day. He was fine at school but became extremely upset soon after getting home. One of the recommendations of her consultant (the same person Demi saw last month!) was to discover a source of Red Dye 40 in his diet. After a little investigation, they discovered that he chose red Gatorade for his drink with lunch every day. This choice could contribute to two things: 1) A huge source of Red Dye 40 and 2) A huge sugar high, followed by a tremendous low when he got home from school. Since he's been off the red Gatorade (less than a week!), his meltdowns after school have disappeared and he's sleeping much better (which could be due to Carol's treatments - the alternative health practitioner).
I don't believe Demi ever had a severe reaction to Red Dye 40, had no reason to go looking for it. But this morning, we were out of kool-aid, which I normally put in Demi's milk. Of course, being the cheap-o that I am, we were using Great Value brand drink mix (which I'm beginning to loathe), which was full of Red Dye 40 - both in the Grape mix and the Cherry mix. Ok, no kool-aid from that source any more. At least I could take the unopened Cherry mix back for a refund.
On the subject of Great Value brand, I've noticed that almost every single package, regardless of the contents, has "Manufactured in a facility that also processes wheat, nuts, etc." - the message varies somewhat in specifics. I checked the can of black beans we had last night - "processed in facility that processes wheat"! Beans and wheat together?? I checked several other containers - everything had a message like that or said "gluten-free". I only found the sour cream (which Demi doesn't eat anyway because of CF), garbanzo beans (we use those a lot in homemade humus which Demi loves), and canned corn to be totally gluten free.
Obviously, my shopping habits need a makeover. It's a journey...
Yesterday, I met a woman with a 15yo autistic son. After years of using medications, she's trying "alternative" means and has seen some results in less than a week. One particular problem she had with her son was meltdowns after school every day. He was fine at school but became extremely upset soon after getting home. One of the recommendations of her consultant (the same person Demi saw last month!) was to discover a source of Red Dye 40 in his diet. After a little investigation, they discovered that he chose red Gatorade for his drink with lunch every day. This choice could contribute to two things: 1) A huge source of Red Dye 40 and 2) A huge sugar high, followed by a tremendous low when he got home from school. Since he's been off the red Gatorade (less than a week!), his meltdowns after school have disappeared and he's sleeping much better (which could be due to Carol's treatments - the alternative health practitioner).
I don't believe Demi ever had a severe reaction to Red Dye 40, had no reason to go looking for it. But this morning, we were out of kool-aid, which I normally put in Demi's milk. Of course, being the cheap-o that I am, we were using Great Value brand drink mix (which I'm beginning to loathe), which was full of Red Dye 40 - both in the Grape mix and the Cherry mix. Ok, no kool-aid from that source any more. At least I could take the unopened Cherry mix back for a refund.
On the subject of Great Value brand, I've noticed that almost every single package, regardless of the contents, has "Manufactured in a facility that also processes wheat, nuts, etc." - the message varies somewhat in specifics. I checked the can of black beans we had last night - "processed in facility that processes wheat"! Beans and wheat together?? I checked several other containers - everything had a message like that or said "gluten-free". I only found the sour cream (which Demi doesn't eat anyway because of CF), garbanzo beans (we use those a lot in homemade humus which Demi loves), and canned corn to be totally gluten free.
Obviously, my shopping habits need a makeover. It's a journey...
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