Re: Testosterone/mito child

[Guest guest]

that would be more likly a food allergy for it's description

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Re: Testosterone/mito child

That was so strange to see that you mentioned "unexplained vomiting." My son used to vomit for no reason...through the night, after eating, etc. I used to keep a towel next to the bed to try and catch his puke at night. Developmental Pediatrician said that was normal. UGH!! The vomiting went away after gfcf diet AND artificial colors removed. Is vomiting a fairly common symptom of mito? Autism? I don't hear about it much.>> , a lot of things that our kids typically undergo are symptoms of> possible mito. Developmental regressions, failure to thrive, seizures,> food aversions/intolerences, unexplained vomiting, and it generally> has onset after illness. If you have more than one child with autism> it's another indicator. Remember, like autism a kid with mito disorder> may/may not display every symptom. There are often several variants of> most mito labels.> > Because so many kids like mine had NO to little diagnostic lab tests> when they got sick, we just don't know how many kids with an autism> label may really have another condition. No testing = no data = no> definition. The more I read the more I really believe a good segment> of our autism population is actually a mitochondrial/metabolic disorder.

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[Guest guest]

yes if he ever gets really sick i would mention it, as he DID have low mucsle tone at one point....and poor weight gains as those are on the check list. you may actually BE treating mito with out knowing it via DAN protical, heck we may all find out years from now that autism IS a mito disorder which is why they have the decline with autism, it wouldn't shock me in the least......it just doesn't have that label as of yet. but I think the medical world is just NOW seeing the medical issues that are connected with autism over the board, via GI, muscle tone, moter skills, allergies, immune failor,malabsorption, seizers, ect ect....where before they just junked it to "autism" it's bad moms or in there head kinda thing, Buie and other mainstream dr's giving us the time of day and backing what us moms are seeing will change that trend, unforchantly, it will like by another decade down the road before we see the fruits of all that labor.....

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Re: Testosterone/mito child> > > > > > The primary way it's diagnosed is through a tissue biopsy. Skin,> > organs, and muscle may be used, a small sample is taken. However,> > many, many tests are generally done prior to the biopsy. Sometimes> > enough labs/behaviors fit for a doctor to feel reasonably sure > it's a> > particular type. Others even undergo the tissue biopsy but still > have> > inconclusive findings. These are likely suffering from some form > but> > it's either an unknown variant or perhaps an undiscovered type.> > > > I've also heard a thought that it's not quite the level of the > known> > mito disorders, that instead it's considered a lesser dysfunction.> > That is likely where a supplement and/or dietary restriction helps> > resolve the problem. It doesn't really cure it but manages the> > condition so well it feels resolved. Sort of like a diabetic who > with> > diet, medication, and lifestyle changes loses many of the > problems but> > still has the underlying condition. > > > > Some of the other classic lab findings are elevated organic acids > or> > an unusual elevation in an amino acid, or even an unusual ratio > among> > various amino acids. Lactate, pyruvate, and ammonia can also be> > elevated in mito disease. Carnitine can be either unusually low or> > high. Also other vitamin deficiencies may occur, or worsen the> > condition. That's probably why mb-12 shots and other supplements > help> > so many kids with autism.> > > > Debi> > > > > > > > > > > > > > ----------------------------------------------------------> ----------> > > > > > > > No virus found in this incoming message.> > Checked by AVG - http://www.avg.com > > Version: 8.0.173 / Virus Database: 270.7.5/1702 - Release Date: > 10/1/2008 9:05 AM> >> > > ------------------------------------------------------------------> > > No virus found in this incoming message.> Checked by AVG - http://www.avg.com > Version: 8.0.173 / Virus Database: 270.7.5/1702 - Release Date: 10/1/2008 9:05 AM> > > > > > > --------------------------------------------------------------------> > > > No virus found in this incoming message.> Checked by AVG - http://www.avg.com > Version: 8.0.173 / Virus Database: 270.7.5/1703 - Release Date: 10/2/2008 7:46 AM>

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it was a metabolic speicalist that TOLD us they needed to be sick to GET the labs,or it won't show anything. we DID the tests while our son was healthy and it showed nothing after having had a GI scope with all kinds of markers off the chart like CO2 levels, and amino acids that when fasting 1/2 were WAY low and haf normal and then when ON foods the normals would sky rocket and the low would normalize meaning we could NEVER have normal amino acid presence.....so they sent us home with a list from the mito spectialist in boston saying WHEN he gets sick to run all these listed labs....we had to hold onto it for a year till he crashed to run them,.......but also know that things like metal poisening can also LOOK like mito issues which may be why there is alot of over lap on things in both

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Re: Testosterone/mito child

That's not uneducated at all. My child had many, I never realized whatthey were. She would begin vomiting clear liquid over & over forhours. Eventually the clear liquid would turn dark green as if it wascoming from her liver/colon. I'd rush her to the hospital as she wouldappear dehydrated. Her labs would be insane. Like for Allie, anion gapwould over double the high end of ref range, her CO2 level would be1-2 points from organ failure, etc. They would call it "vomiting fromsore throat" because her throat would be red. WHOSE THROAT ISN'T REDAFTER PUKING FOR HOURS???? Sorry, had to vent my anger at thehospital. They would give her various electrolytes for days and shewould get to the bottom end of normal labs, they'd send her home.After the third time in a 20 mo period it was said by them, "We thinkshe may have a metabolic condition, here are a few phone numbers tocall next week, it's the weekend we can't call them in." But, I disagree with Christel that you do not *have* to have a crashto test. During a crash like my above example it makes labs moreobvious and easier, but it's not required. When the body is understress, it often magnifies the disorder. It's just one piece of thepuzzle to get those labs while the child is very sick.Debi

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[Guest guest]

I don't know how common it is. I've read differing opinions about

vomiting in autism. Some say it's the gluten/casein/other IgG

allergies. Allie vomited while on gfcf, vomited off the diet. There

was no rhyme/reason. But I have read in mito that there are foods that

can trigger it and vomiting is almost always listed as a symptom for

any mito/meta condition.

For example, MSUD. It stands for maple syrup urine disease. In that

condition the person cannot metabolize the amino acids leucine,

isoleucine, and valine. For some with MSUD it's not a problem until

foods high in those aminos are eaten. When it does, vomiting is

possible. So let's say we have a kid with a mild variant of MSUD. She

likely will be able to get by with a moderate amount of potatoes,

pasta, etc, not considering the gfcf component. But then the kid gets

some eggs, soy, and other protein-rich foods and she has a vomiting

spell. We call it a stomach bug.

Then a couple weeks later she eats some more protein-rich foods,

vomits again. We take her to the doc, maybe even a DAN doc, and we

pull out all gluten/casein/soy. She does a little better until she

starts eating the protein-rich flours in gfcf cooking, then vomits

again. We consider it's leaky gut needing to heal, maybe even GI

distress. We take her to a ped gastro who scopes & finds only the

mildest esophogeal irritation, assumes it's high acid & prescribes an

antacid.

She does better on the antacid, but what we don't realize is she's

avoiding most protein foods that we consider to be autism routine

issues. It's really that she's figuring out in her little body that

when she eats x it makes her sick, so she's gonna fight tooth & nail

to avoid x, and y, and z that she's associated with her not feeling

good. She regressed about the same time the vomiting started, so she

got the autism diagnosis months if not years prior by a psychologist

who can't run lab tests and a pediatrician who won't.

Our kids can't tell us what's hurting and doctors will almost always

seek out the easiest, most common reason. A few lab tests could give

us a far better idea. I've said it before & I'll say it again, it is

not normal for a child to regress. It's not normal for a child to

never progress normally. For the life of me I cannot understand why in

2008 doctors don't even consider running basic amino acid/organic

acid/comp metabolic panel, complete CBC, lactate, pyruvate, and

ammonia urine & blood tests, particularly when sick, to make sure

everything is okay. Maybe they won't find anything but we're talking

about $300 or so billed in insurance just to double-check very real

reasons kids regress/fail to develop. If anomalies are found, then we

can proceed from there.

Debi

[Guest guest]

debi

this can also be true of kid with ammonia issues or low pancreatic enzymes.....or allergies to meat. all things to possibley look at for your child

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Re: Testosterone/mito child

I don't know how common it is. I've read differing opinions aboutvomiting in autism. Some say it's the gluten/casein/other IgGallergies. Allie vomited while on gfcf, vomited off the diet. Therewas no rhyme/reason. But I have read in mito that there are foods thatcan trigger it and vomiting is almost always listed as a symptom forany mito/meta condition. For example, MSUD. It stands for maple syrup urine disease. In thatcondition the person cannot metabolize the amino acids leucine,isoleucine, and valine. For some with MSUD it's not a problem untilfoods high in those aminos are eaten. When it does, vomiting ispossible. So let's say we have a kid with a mild variant of MSUD. Shelikely will be able to get by with a moderate amount of potatoes,pasta, etc, not considering the gfcf component. But then the kid getssome eggs, soy, and other protein-rich foods and she has a vomitingspell. We call it a stomach bug. Then a couple weeks later she eats some more protein-rich foods,vomits again. We take her to the doc, maybe even a DAN doc, and wepull out all gluten/casein/soy. She does a little better until shestarts eating the protein-rich flours in gfcf cooking, then vomitsagain. We consider it's leaky gut needing to heal, maybe even GIdistress. We take her to a ped gastro who scopes & finds only themildest esophogeal irritation, assumes it's high acid & prescribes anantacid. She does better on the antacid, but what we don't realize is she'savoiding most protein foods that we consider to be autism routineissues. It's really that she's figuring out in her little body thatwhen she eats x it makes her sick, so she's gonna fight tooth & nailto avoid x, and y, and z that she's associated with her not feelinggood. She regressed about the same time the vomiting started, so shegot the autism diagnosis months if not years prior by a psychologistwho can't run lab tests and a pediatrician who won't.Our kids can't tell us what's hurting and doctors will almost alwaysseek out the easiest, most common reason. A few lab tests could giveus a far better idea. I've said it before & I'll say it again, it isnot normal for a child to regress. It's not normal for a child tonever progress normally. For the life of me I cannot understand why in2008 doctors don't even consider running basic amino acid/organicacid/comp metabolic panel, complete CBC, lactate, pyruvate, andammonia urine & blood tests, particularly when sick, to make sureeverything is okay. Maybe they won't find anything but we're talkingabout $300 or so billed in insurance just to double-check very realreasons kids regress/fail to develop. If anomalies are found, then wecan proceed from there. Debi

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