My Kid is a Damn Nutter - Page 34

Clodfobble · 08-25-2009, 04:52 PM

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.

monster · 08-25-2009, 07:45 PM

Excellent

classicman · 08-25-2009, 10:10 PM

Outstanding!

Clodfobble · 08-25-2009, 10:15 PM

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.

Shawnee123 · 08-25-2009, 10:47 PM

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.

limey · 08-26-2009, 02:30 AM

Mah-vellous news. Good for you, Clod!

Pie · 08-26-2009, 07:17 AM

Yay Clod and Mini!

Queen of the Ryche · 08-27-2009, 01:01 PM

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!

Clodfobble · 08-27-2009, 01:07 PM

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.

classicman · 08-27-2009, 01:19 PM

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

Clodfobble · 08-27-2009, 01:30 PM

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.

classicman · 08-27-2009, 02:22 PM

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

morethanpretty · 08-27-2009, 04:54 PM

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

monster · 09-10-2009, 11:53 AM

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

Clodfobble · 09-10-2009, 01:25 PM

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.)

08-25-2009, 04:52 PM	#496
Clodfobble UNDER CONDITIONAL MITIGATION Join Date: Mar 2004 Location: Austin, TX Posts: 20,012	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. __________________ My book My other book My spirit animal

08-25-2009, 07:45 PM	#497
monster I hear them call the tide Join Date: Dec 2005 Location: Perpetual Chaos Posts: 30,852	Excellent __________________ The most difficult thing is the decision to act, the rest is merely tenacity Amelia Earhart

08-25-2009, 10:10 PM	#498
classicman barely disguised asshole, keeper of all that is holy. Join Date: Nov 2007 Posts: 23,401	Outstanding! __________________ "like strapping a pillow on a bull in a china shop" Bullitt

08-25-2009, 10:15 PM	#499
Clodfobble UNDER CONDITIONAL MITIGATION Join Date: Mar 2004 Location: Austin, TX Posts: 20,012	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. __________________ My book My other book My spirit animal

08-25-2009, 10:47 PM	#500
Shawnee123 Why, you're a regular Alfred E Einstein, ain't ya? Join Date: Jun 2006 Posts: 21,206	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. __________________ A word to the wise ain't necessary - it's the stupid ones who need the advice. --Bill Cosby

08-26-2009, 02:30 AM	#501
limey Encroaching on your decrees Join Date: Feb 2004 Location: An island within the south-west coast of Scotland Posts: 7,016	Mah-vellous news. Good for you, Clod! __________________ Living it up on the edge ... of civilisation, within the southwest coast of

08-26-2009, 07:17 AM	#502
Pie Gone and done Join Date: Sep 2001 Posts: 4,808	Yay Clod and Mini! __________________ per·son \ˈpər-sən\ (noun) - an ephemeral collection of small, irrational decisions The fun thing about evolution (and science in general) is that it happens whether you believe in it or not.

08-27-2009, 01:01 PM	#503
Queen of the Ryche is fleeing the scene Join Date: Apr 2005 Location: Beautiful CO Posts: 1,510	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! __________________ Once, in an interview, Chuck Norris admitted that he was not the most awesome thing ever. He declined to elaborate; but I believe we all know that he was referring to the existence of chocolate covered bacon. I'd rather be judged by twelve than carried by six.

08-27-2009, 01:07 PM	#504
Clodfobble UNDER CONDITIONAL MITIGATION Join Date: Mar 2004 Location: Austin, TX Posts: 20,012	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. __________________ My book My other book My spirit animal

08-27-2009, 01:19 PM	#505
classicman barely disguised asshole, keeper of all that is holy. Join Date: Nov 2007 Posts: 23,401	any chance mom could ride a bus with him and comment on how neat and wonderful it is? Just thinkin out loud __________________ "like strapping a pillow on a bull in a china shop" Bullitt

08-27-2009, 01:30 PM	#506
Clodfobble UNDER CONDITIONAL MITIGATION Join Date: Mar 2004 Location: Austin, TX Posts: 20,012	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. __________________ My book My other book My spirit animal

08-27-2009, 02:22 PM	#507
classicman barely disguised asshole, keeper of all that is holy. Join Date: Nov 2007 Posts: 23,401	A bus - not that bus. Just to ride on with mom and mini - heck maybe even dad. Just to be on and ok with. __________________ "like strapping a pillow on a bull in a china shop" Bullitt

08-27-2009, 04:54 PM	#508
morethanpretty Thats "Miss Zipper Neck" to you. Join Date: Sep 2006 Location: little town (but not the littlest) in texas Posts: 2,957	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 __________________ Addicts may suck dick for coke, but love came up with the idea to put a dick in there to begin with. -Jack O'Brien

09-10-2009, 11:53 AM	#509
monster I hear them call the tide Join Date: Dec 2005 Location: Perpetual Chaos Posts: 30,852	How's it going, Ms Fobble? I hope the silence means nothing horrible to report..... __________________ The most difficult thing is the decision to act, the rest is merely tenacity Amelia Earhart

09-10-2009, 01:25 PM	#510
Clodfobble UNDER CONDITIONAL MITIGATION Join Date: Mar 2004 Location: Austin, TX Posts: 20,012	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.) __________________ My book My other book My spirit animal Last edited by Clodfobble; 09-10-2009 at 01:34 PM.*

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