Good grief... I must have had a tugging distraction at my desk ( a wee boy distraction)... so sorry for the amazing amount of misspellings... its a wonder you could make sense of it all...

Have you tried polenta on your kids yet? if so how was it recieved?

Not yet. I have a pre-cooked tube of it sitting in the pantry, but I haven't gotten around to using it yet. Neither one of them is big on mushy textures though, so I don't suspect it would go over easily.

I make a tofu polenta lasagna that is really good. My mom used to slice polenta really then and pan fry it and serve it with real mapel syrup... thats call mush... but its good.

can you crisp it up? I seem to remember my sister trying it and she said it was most palatable spread on toast then lightly broiled like cheese.

this from wikipedia:

Cooked polenta can also be shaped into balls, patties, or sticks and fried in oil until it is golden brown and crispy; this variety of polenta is called crostini di polenta or polenta fritta. This type of polenta became particularly popular in Southern Brazil as a consequence of Northern Italian immigration. Similarly, once formed into a shape it can also be grilled using, for example, a brustolina grill.

I make it sometimes, the kids love it. Italians call it polenta, PA Dutch/amish call it mush, it's the same thing though.

My family is from Brazil... growing up we ate a cheezy polenta patty... it was called an "arepa"

Today's the day I send my little one off to school for the first time.

Oh, except someone at the school screwed up and didn't get our transportation forms sent to the bus department, so they'd never heard of us when I called yesterday wondering why we hadn't been given a pickup time yet. They're getting it sorted out, and she promised she would have us on the bus route tomorrow, but there was just no way it could happen today (they wouldn't have a carseat on the bus for him, for one thing.) So today I have to take him to the school and pick him up myself, which is no big deal, except for the potential for a tantrum in the hallway as I leave. But I honestly think he'll be so starstruck that he won't notice me back away like a ninja, and then he can have all the tantrums he wants with the classroom door closed. But it will only work once, so they'd better get him on the bus tomorrow or suffer the consequences.

Ugh, it's always something, huh Clod?

I hope his first day goes well!

Thanks, Shaw! The dropoff went great, anyway. He stared at me long and hard when the teacher said, "Do you want to say bye-bye to Mom?", but then the aide started to let the door close and he turned without a peep. We'll see how he is in another couple of hours... :)

lol (in my mind)
 

A ninja with a stroller.

Ask any real ninja--that's how they roll.

lol in my mind. picturing our old stroller *squeak* *squeak* *squeak* *squeak* as we roll away like a ninja.

and....?

Who, me?

He had an awesome day! The folder notes from the teacher said he whined about me at various points but didn't resort to tantrumming even once. He barely ate one or two bites of lunch, but I think that will get better as he gets used to everything. No word yet from the bussing department though, so it's looking like he'll have to be driven again tomorrow.

Excellent :D

Outstanding!

The last few days have been freaking outstanding in general. It's either the new zinc supplement, the reintroduction of the digestive enzymes (we had to go off them for awhile to get accurate labtest results,) the auditory integration therapy, or some combination of those three. But whatever it is, we're keeping it up, because his speech has been through the roof.

So glad to hear he had a great day. He's going to be just fine, as I've always suspected. Keep doing the great work, Clod.

Mah-vellous news. Good for you, Clod!

Yay Clod and Mini! :cheerldr:

Day three, same news? You constantly bring a tear to my eye Clod, this time one of joy! Soooooo glad to hear that horrible regressive spell is over. Woo hoo!

Well, ah, mostly. Day 2 he had some "angry moments," according to his folder, but he recovered quickly. This morning they finally got our bus paperwork sorted out... and he was a lot more terrified of the bus than I thought he was going to be at this point. It's big and noisy and all that. The lady was nice though and re-seated another little girl so that he could be put in the carseat right next to the front window, so he could see me waving. But yeah, he was pounding on the glass screaming, "Mommy!" the whole time. It was sad. I think he'll be okay with getting dropped off this afternoon, but mornings may continue to go poorly for another few days.

any chance mom could ride a bus with him and comment on how neat and wonderful it is? Just thinkin out loud

Nah, I'd have to bring the baby and her carseat for one thing, and then I'd have to walk home (carrying it and her) because the bus has other routes for other schools it has to get on with.

A bus - not that bus. Just to ride on with mom and mini - heck maybe even dad. Just to be on and ok with.

I'm sorry if you've already posted about this, or tried it:

Amy's organic brand has some Gluten and Dairy free products that might be worth checking out. I noticed one of their meals while at a local "farmers market" store.
In case you hadn't heard of it/seen it, thought I would share.

http://www.amys.com/special_diets/index.php

How's it going, Ms Fobble? I hope the silence means nothing horrible to report.....

Oh, it's going well, I'd been meaning to post an update on things but I've been busy getting used to the new school routine... speaking of, he loves school! Runs to meet the bus everyday, and often whines at the end of the day when he realizes school is over. We were very impressed with everything we saw at parent information night; our school district's program is really great.

First, the great news is his lab tests came back showing no sign of mitochondrial dysfunction whatsoever! This is great, but weird, because he still showed high lactic acid levels--which was what led to the suspicion of a mitochondrial disorder in the first place. One other explanation was a zinc insufficiency--it's very unusual for the levels to get so high just from a lack of zinc, but not impossible, and my kid is certainly very unusual. The lactic acid levels came down slightly when we put him on 15 mg/day of zinc (which is the 100% daily recommended allowance,) but it was when we added another 20 mg that we saw the big cognitive improvement. So big, in fact, that we went ahead and started his sister on it, just to see what would happen. She is doing better on it as well, though not as dramatic an improvement as his. We won't know how much his lactic acid has continued to come down until the next round of blood tests, but at this point we've marked that issue as tentatively settled and moved on to the next one.

The next issue of course being the perennial one, his digestion. The doctor agreed with the nutritionist that his number of food sensitivities was stunning, especially considering at least half of them had definitely developed just in the last couple of months. After a review of his reactions to the antibiotic (great) and antifungal (terrible,) the conclusion drawn was: the antibiotic was the right path to take, but if his stools never totally improved while on it then we didn't go far enough; meanwhile, the antifungal was ineffective against whatever strain he's got in there--enough to make it struggle a little and give him the classic die-off reaction, but not nearly effective enough to just kill it. So ultimately in the future we will likely need to try another round of a different antifungal, but in the meantime we're starting with what we know works, a longer course of antibiotics. We're about a week into it now, and are finally seeing some solid stools again. The other thing we're supposed to add in another day or two is this product called IgG 2000 DF, which is basically straight immunoglobulin antibodies in powder format. It's one step below IVIG, and of course a lot easier to administer. The hope is that this should bring his digestion back from the brink and allow him to go off the rotation diet soon, and start eliminating some or all of his sensitivities over time.

Another thing his blood tests showed was he has exceedingly low Vitamin D levels, despite the fact that he goes in the sun every day and gets 100% of his daily allowance (400 IU) in his multivitamin. (Good prediction by Pie on that one!) So we've bumped him up to a concentrated liquid D3 supplement, 1500 IU/day. Haven't seen a big external change from it, but it's basically impossible to overdose on D so we went ahead and put his sister on it as well, and she has reacted extremely positively to it.

So the current rundown of meds is this:

1500 mg Vitamin C (immune support)
2000 mg fish oil (immune support)
4 tsp apple cider vinegar (digestive support)
1 tsp multivitamin powder
1000 mg Calcium
1 1/2 tsp Metronidazole (antibiotic)
5 drops Vitamin D3 liquid
Probiotic capsule (because even if it's only in him for a few hours before the next antibiotic dose, he needs all the help he can get.)
20 mg Zinc
Epsom salt lotion (magnesium sulfate)
**IgG 2000 DF - starting soon

The multivitamin and antibiotic get split into two doses, morning and evening, and the Vitamin C and apple cider vinegar get split across all his juice cups during the day. Minifobette is on a reduced list of some of the above, including finishing off the multivitamin supplement that Minifob can no longer take because it has coconut in it.

I'm really hopeful about the IgG supplement. The first sign that we'll know it's working is if he gets sick right away, because that will be an indication that his immune system is actually functioning appropriately and starting to fight off all the inherent chronic infections he has going on, rather than attacking itself. (That's one of the other signs that he has an immune dysfunction in general, he doesn't get sick. Not ever. Everyone else in the house can be horribly ill, and he's totally fine. He had a few colds as a baby, and a Roseola infection at about 18 months, and that was it. Nothing since then.)

Excellent news. So happy for you that the school is working

Now to figure out how to get all that into one yummy cookie. :D

We're still practicing the pill swallowing. He'll do it on accident sometimes, because I'm starting with the smallest of (empty) capsules, but he doesn't get what I want him to do yet, he mostly just tries to chew it. What I need to do is just knuckle down and give him a real capsule, because then if he chews it there will be an immediate negative consequence in the form of nasty medicine powder flooding his mouth.

Yeh it'll taste really bad and he may NEVER let you try that again.
Try training him with frozen peas. I had issues learning how and thats what my mom did. I eventually "got it"

Fight to overcome autism gets major boost, higher priority

Round Two, FIGHT!
 

Minifobette's labwork came in, which means we can begin the real work of getting her healthy again.

Some numbers are better than Minifob's, but most are worse. The good news is she does not have a vicious bacterial infection like he did (and still does, based on current symptoms,) but she also shows zero good bacteria colonization, despite being on strong probiotics for months. Mild fungal infection, which if we're lucky will be knocked out by a single course of antifungals (not the case with Minifob, but here's hoping.)

But her other metabolic numbers are farther off. They show a significant need for carnitine, which is typical in kids with low muscle tone and delayed physical milestones (definitely her, and definitely not her brother.) Her lactic acid level is also too high, so they're going to do the same bloodwork he had to rule out a mitochondrial disorder. But most distressing is that 5 of the 8 detoxification markers are extremely high (all these levels they're testing for are various substances in the Krebs Cycle.) This is typical of kids who had a single large regression (Minifobette,) rather than weirdness slowly creeping in over time (Minifob.) It doesn't tell us anything about what levels or kinds of heavy metal poisoning she may have stored up, just that we know the cycle's broken, so whatever goes in definitely isn't going to be coming out. But she's far too young to see if chelation drugs can pull anything significant. The only option right now is to try to raise her glutathione level so her body can maybe do some of the work itself after all, but realistically it will be a stopgap measure at best until she's older. IV glutathione is the most effective option, but it's not really a viable one. So we're going to try a transdermal (skin cream) compound first, and test her again in a few months.

Meanwhile, we decided a few weeks ago to just rip the bandaid off, and put her on an elemental diet. This is a liquid formula that is 100% pre-broken-down amino acids and nutrients, so the digestive system gets to take a complete and total break. No more allergens, nothing barreling through and agitating open wounds or adding to the inflammation, just time to heal. It's a very safe and effective treatment, but parents usually exhaust other options first because taking away all food is, of course, not pleasant. But we figured better now than later. For one thing, she's so young there's no social aspect to food for her yet. For another, as long as she's under the age of two, the law says our insurance has to cover it, no questions asked. The formula runs a little under $600 a month, so that's important. The hope is that within 2-3 months max she should be healed and digesting normally, and then we can start reintroducing foods. With any luck this will allow most if not all of her food sensitivities to go away as well--no more pooping completely undigested fruit! We're still hoping it won't be necessary for Minifob, but if he doesn't respond to this latest (third) round of very strong antibiotics, we're going to start running out of options soon.

It was hard to get her started--she refused it for 30 hours straight, and then I broke down and fed her real food for dinner that night because she was literally staggering. But the next morning I went right back to offering only the formula, and from then on she drank it without complaint. And within a day or two she was drinking it eagerly and being much more energetic and happy all around than she has been in a long time. I feel pretty sure that whatever else is going on, she is in less pain now than she was. Unfortunately her poop hasn't improved yet--it's different, which is something, but it's still mostly liquid, very green, and there are still the occasional mystery white globs. No idea what the white globs are--they say they don't think it's the same as the white poop you get with liver failure. It might be dead yeast colonies, but they're infrequent so we've never been able to run a test. The nutritionist told me that even though the input is liquid, she should be having completely normal, solid brown turds (not the word she used) on this diet, so we'll know when we get there.

If there are heavy metals in her system, where do you think they might have been coming from? If I remember correctly from pictures of your house, it's pretty modern. Do you think it's environmental, or food, or something else?

Are you even saying here that you think there may be heavy metal poisoning?

The amino acid liquid diet is amazing. I hope it works well!

Trace amounts of stuff are everywhere--soil, carpeting, air, and especially tap water. It's not at the level of eating lead paint or anything, this is the little stuff normal bodies just process right out. But if you don't process it, it builds up, and eventually gets to dangerous levels. If you've already broken the system, for example, 4 vaccination shots will get you to a symptomatic level of aluminum. (You get trace amounts of aluminum drinking sodas in cans, too, not that she's ever had a soda.) Most cities' tap water would get you to dangerous levels of several things in just a few months of drinking it. Cheap bed mattresses commonly use arsenic as a flame retardant. Or if you have a single piece-of-crap toy from China with lead in it, chewing on that one toy could do it. We're constantly taking it in and peeing it out, no harm done. But if you couldn't pee it out, you'd be in trouble.

I do think she has some buildup, but we'll obviously test to be sure. And once we know she's high in, say, arsenic, we can get appropriate test kit(s) that we can use on stuff around the house to help us figure out where it's coming from and hopefully get rid of the offending item.

Clod - nothing to say here, but wow, crikey. Your kids are so lucky to have the determined powerhouse that is you for a mum!

Just a few happy thoughts and hugs for you Clod.

It's become obvious that I seriously screwed up.

2 and a half weeks ago, we were invited to a birthday party of one of Minifob's classmates. The invitation proclaimed GFCF cupcakes would be available, so we were excited to say we could actually attend. I was pretty sure they would be made out of rice flour (as most pre-made GF items are,) which is one of the things he has a digestive sensitivity to, but I figured we could handle a day of extra bad diarrhea for the opportunity to actually practice social skills and pretend he has friends in the real meaning of the word.

Well. As you can tell from the tone of this post, that was a poor decision. It occurred to me too late that they were almost certainly made with real eggs, which he has a true allergy to, and a pretty strong one at that. I'm so used to making everything myself, I actually forget to think of all the things he can't eat--I forget that normal people don't make their bread products with potato starch by default like I do.

So. Full-on screaming and flailing tantrum within 30 minutes of eating. Needless to say, he couldn't participate in the rest of the birthday party. So much for social interaction. But it continued for 5 straight days. And since then he's been borderline--he'll mostly behave in the house, but I can't take him out in public. Confirmed that the hard way when I tried to let him walk with me to the mailbox like we'd been successfully doing for a couple months now, and had to do the neighborhood walk of shame carrying him all the way back to the house shrieking at the top of his lungs.

Cognitively he's still pretty much where he was, it's just his behavior that's regressed 6 freaking months. His teacher says he's suddenly having some trouble with changes in their routines, things he has been fine with since day one of school. Yeah, tell me about it. Obviously the egg is long out of his system, but the doctor's theory is we reinflamed his intestines by pouring allergens through it just as it was trying to heal, and he'll need extra time to recover from that. Great. No more fucking birthday parties, kid. Sorry.

Meanwhile, the rotation diet seems to have had no effect; we are still losing foods at a regular rate. Pears and fish are the latest casualties. We're down to about 9 foods total that he can eat.

We're beginning the process of getting certain things documented (blood tests and whatnot) so the insurance company will cover the elemental formula for him. The blood tests will also hopefully give us a clue as to which particular steroids or anti-inflammatories he might respond best to. He'll probably be on the liquid diet with his sister by Thanksgiving.

:( I'm so sorry to hear this, Clod. What a let-down!

So sorry Clod. How awful for you.

Oh, Clod! And you have worked so hard. :( I am sorry. I wish I had better words of comfort, but I hope he heals quickly.

Sorry Clod.

I can't even imagine how hard it would be to restrict ALL foods from a kid, but I think it's the right thing to do, the fastest way to heal him and move forward. Sending you strength and patience vibes.

man, clod. that totally blows. Poor little guy, poor family.

Speechless, Clod. I hope and pray for a successful outcome for your kids. I wish I had a magic solution to this. I am constantly amazed at your resolve.
Sorry this suck so bad, but you are AWESOME!

Nah, see, I may be awesome during the weeks when my kids are making progress... but times like this, I swear to God I'm shoving him in front of the TV for upwards of 3 hours straight every day just to make him be quiet(er). It's not my proudest moment.

um... clod... for many parents that's the norm. If the kids are lucky, the parents suggest they might want to do their homework while they watch. trust me on this. People Invite my kids over for marathon platdates and when i say "are you sure?" they say hell, yeah, they'll probably just watch TV or play video games most of the time".

Clod, you should seriously ease up on your self. It's not like you're shoving him in front of the TV for three hours just to qui -

Umm lemme finish reading your post.

j/k you know I think you are the 2nd best mom I know.

eek.

I send them into the yard to play. We don't have a TV or Video games. Not even tetris or pong. I feel guilty about sending them outside to play instead of teaching them how to do something useful.

yup. I hear ya. of course it means mine are awesomely behaved on playdate because they get to look at the box with magic pictures.... :lol: ...and that is also invaluable for road-trips.

And you probably will again, that's life. After the crap you've been going through, the things you've had to learn, much of it on your own breaking new ground, it's a fucking miracle you haven't made more mistakes.

I think you've done a miraculous job, and I worry people don't realise how much you've sacrificed, how much of yourself you've put into the battle... especially the people closest to you. From what you've written about what friends/family have said and done, or at least proposed to do, they don't get it... and don't appreciate your efforts.

I know your personal life is none of my business, but you've laid out so much in this thread, I'm concerned what toll this lifestyle is taking on you. Yeah, I know you don't have a choice, some might, but you don't. But please don't be too tough on yourself, you don't need or deserve that... mkay?

What xoB said.

I think I forgot to mention, I did find a local support group of biomedical moms awhile back. We have a messageboard, and meet in person once a month--in the late evening, after we've all put the kids to bed, because if there's one thing these women understand, it's that Daddy can't do the bedtime routine by himself. :) They've been pretty invaluable.

Cool, there's nothing like support from someone that's walked a mile in your(similar) shoes. :thumb:

What Bruce said, squared!

I don't even know what to say Clod other than wow, dammit, and here's a hug. (And you more deserve the three hours of TV time if it gives both of you a break.)

I'm very emotionally ambivalent about the last two days.

By some accident of calendar cramming, yesterday was both the day we started Minifob on the liquid diet, and his checkup with the neurologist, who hasn't seen him since April.

I was stoked about the neurologist appointment. Because this is a guy who, while not a sanctimonious know-it-all like the pediatrician, did waffle on the possible effectiveness of the GFCF diet when I told him we had (just barely) started Minifob on it last time we saw him. So I was very excited to bring him back and show him our amazing progress.

But we didn't even get to see him. The assistant lady (I don't know exactly what she is, but it's somewhere between the nurses who take your height/weight and the doctor himself) was suitably impressed with his gains, and asked a lot of interested questions about his dietary stuff... and then said that was pretty much it, we didn't need to come back unless something drastically changed. As if they saw this all the time, as if they hadn't told me 6 months ago that this wasn't going to make a difference. She just smiled and shrugged and said, "Whatever you're doing, it's working, so my advice is don't change anything." Maybe she was sparing me any discouragement from her humbug boss living in denial, or maybe she was protecting him from me. :)

But at any rate, Minifob's no longer a viable candidate for any of the neurological drugs routinely prescribed for autistic kids. Good to know.

Meanwhile, the liquid diet's going okay. He's not enjoying the drink mix, but he's willing to bargain individual swallows of it for things like another 5 minutes on SesameStreet.org, or another blow on the bubble wand. And when he isn't being specifically reminded about food, he's been in a really stellar mood. He's not making it as hard on me as his sister did, not by a long shot.

Anyway, I finally got around to putting together a new progress video last night. Mr. Clod made fun of me for the final title screen, ("You don't have to go all Oprah about it...") but I told him he could bite me. :)