Second post...anyone treating child with metabolic disorder? Pls reply.thx

[Guest guest]

It's hard to get a dx for metabolic disorders in autistic children, I think. So many doctors blow things off because they want to pawn everything off to autism - which never made any sense to me since it's "supposedly" a neuro disorder but I guess they manage to pawn that off on to the parents or the child. They won't eat right, the parents aren't making them eat right, etc.You have to almost *scream* with symptoms of metabolic disorders in order to even be considered. We don't live in a world of whole health medicine where doctors test for every possibility that symptoms match, they wait for any sign of significant proof despite a laundry list of lesser symptoms.There are some that manage and you're lucky your doctor is preparing enough evidence that he thinks will compel a specialist. I don't know whether it would be sane to say your lucky to have enough higher symptoms to even be considered but you're further along than many of us.I think most of us do treat for metabolic issues since much of the treatment is supplements and diet but I doubt you'll get too many (maybe a couple) that actually are being treated by a mainstream medical professional for it.

Cheryl ~http://www.gryffins-tail.blogspot.com~~@Gryffins_Tail~

[Guest guest]

I did not respond to this post because " metabolic disorder " has no meaning to me. I mean to say, it would seem all our kids have some disorder of metabolism. We have 13 SNPs as determined with Yasko testing, two of which are the 677 and 1298 MTHFR. We have mitochondrial dysfunction in my daughter as determined by OAT. We did not do muscle biopsy so we do not know if our mito dysfunction is " mito disease. "

Are you talking about " inborn errors of metabolism? " That's generally determined at birth, with the heel-stick.If you mean something else, I'm sorry, I didn't quite understand the question. :-)

When you said " treating a metabolic disorder, " well I guess we are... since we are giving vitamins to support methylation that has been impaired.Hope that helps! :-)-- Toni------

Mind like a steel trap...Rusty and illegal in 37 states.

[Guest guest]

Also why I didn't reply. Need more details. Pamela From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Toni Marie Lombardo Sent: Thursday, February 24, 2011 8:45 PMTo: mb12 valtrex Subject: Re: Second post...anyone treating child with metabolic disorder? Pls reply.thx I did not respond to this post because " metabolic disorder " has no meaning to me. I mean to say, it would seem all our kids have some disorder of metabolism. We have 13 SNPs as determined with Yasko testing, two of which are the 677 and 1298 MTHFR. We have mitochondrial dysfunction in my daughter as determined by OAT. We did not do muscle biopsy so we do not know if our mito dysfunction is " mito disease. " Are you talking about " inborn errors of metabolism? " That's generally determined at birth, with the heel-stick.If you mean something else, I'm sorry, I didn't quite understand the question. :-)When you said " treating a metabolic disorder, " well I guess we are... since we are giving vitamins to support methylation that has been impaired.Hope that helps! :-)-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.

[Guest guest]

Toni, Pamela,

My son was dx w autism at two and a half yo. He is 9 now. A year ago he started

falling down for no reason. Has been losing skills and all his words. Had

febrile seizures at one y o and now again this year. mRI came back abnormal.

Numerous health issues with GI problems has gall stones . Other symptoms

inlclude weakness,fecal and urine incontinence and recurrent UTI. Five to be

exact. Since the MRI his pediatrician now suspects metabolic disorder and were

doing more testing. After 7 years of biomed he is now regressing.waiting to see

metabolic doctor.

I would appreciate to hear from any of you dealing with a dx metabolic disorder

or even suspect one.

Thank u in advance...jakes mom

>

> Also why I didn't reply. Need more details.

>

>

>

> Pamela

>

>

>

> From: mb12 valtrex [mailto:mb12 valtrex ] On

> Behalf Of Toni Marie Lombardo

> Sent: Thursday, February 24, 2011 8:45 PM

> To: mb12 valtrex

> Subject: Re: Second post...anyone treating child with

> metabolic disorder? Pls reply.thx

>

>

>

>

>

> I did not respond to this post because " metabolic disorder " has no meaning

> to me. I mean to say, it would seem all our kids have some disorder of

> metabolism.

>

> We have 13 SNPs as determined with Yasko testing, two of which are the 677

> and 1298 MTHFR. We have mitochondrial dysfunction in my daughter as

> determined by OAT. We did not do muscle biopsy so we do not know if our mito

> dysfunction is " mito disease. "

>

> Are you talking about " inborn errors of metabolism? " That's generally

> determined at birth, with the heel-stick.

>

> If you mean something else, I'm sorry, I didn't quite understand the

> question. :-)

>

> When you said " treating a metabolic disorder, " well I guess we are... since

> we are giving vitamins to support methylation that has been impaired.

>

> Hope that helps! :-)

>

> --

> Toni

>

> ------

> Mind like a steel trap...

> Rusty and illegal in 37 states.

>

[Guest guest]

Falling down for no reason can be a severe (SEVERE) B12 deficiency.

(I got that from " Could it be B12? An Epidemic of a Misdiagnosis " - Sally M

Pacholok, RN and J. Stuart, D.O.) -- it can tell you what tests to run

(it's in the back of the book.)

laura:)

> >

> > Also why I didn't reply. Need more details.

> >

> >

> >

> > Pamela

> >

> >

> >

> > From: mb12 valtrex [mailto:mb12 valtrex ] On

> > Behalf Of Toni Marie Lombardo

> > Sent: Thursday, February 24, 2011 8:45 PM

> > To: mb12 valtrex

> > Subject: Re: Second post...anyone treating child with

> > metabolic disorder? Pls reply.thx

> >

> >

> >

> >

> >

> > I did not respond to this post because " metabolic disorder " has no meaning

> > to me. I mean to say, it would seem all our kids have some disorder of

> > metabolism.

> >

> > We have 13 SNPs as determined with Yasko testing, two of which are the 677

> > and 1298 MTHFR. We have mitochondrial dysfunction in my daughter as

> > determined by OAT. We did not do muscle biopsy so we do not know if our mito

> > dysfunction is " mito disease. "

> >

> > Are you talking about " inborn errors of metabolism? " That's generally

> > determined at birth, with the heel-stick.

> >

> > If you mean something else, I'm sorry, I didn't quite understand the

> > question. :-)

> >

> > When you said " treating a metabolic disorder, " well I guess we are... since

> > we are giving vitamins to support methylation that has been impaired.

> >

> > Hope that helps! :-)

> >

> > --

> > Toni

> >

> > ------

> > Mind like a steel trap...

> > Rusty and illegal in 37 states.

> >

>

[Guest guest]

You need to find a good DAN doc. WHere do you live? Have you tested for lyme thru IGENEX Lab? Conside joining the borreliamultipleinfectionsautism yahoo group

Subject: Re: Second post...anyone treating child with metabolic disorder? Pls reply.thxTo: mb12 valtrex Date: Sunday, February 27, 2011, 5:08 AM

Toni, Pamela,My son was dx w autism at two and a half yo. He is 9 now. A year ago he started falling down for no reason. Has been losing skills and all his words. Had febrile seizures at one y o and now again this year. mRI came back abnormal. Numerous health issues with GI problems has gall stones . Other symptoms inlclude weakness,fecal and urine incontinence and recurrent UTI. Five to be exact. Since the MRI his pediatrician now suspects metabolic disorder and were doing more testing. After 7 years of biomed he is now regressing.waiting to see metabolic doctor.I would appreciate to hear from any of you dealing with a dx metabolic disorder or even suspect one.Thank u in advance...jakes mom>> Also why I didn't reply. Need more details.> > > > Pamela > > > > From: mb12 valtrex [mailto:mb12 valtrex ] On> Behalf Of Toni Marie Lombardo > Sent: Thursday, February 24, 2011 8:45 PM> To: mb12 valtrex > Subject: Re: Second post...anyone treating child with> metabolic

disorder? Pls reply.thx> > > > > > I did not respond to this post because "metabolic disorder" has no meaning> to me. I mean to say, it would seem all our kids have some disorder of> metabolism. > > We have 13 SNPs as determined with Yasko testing, two of which are the 677> and 1298 MTHFR. We have mitochondrial dysfunction in my daughter as> determined by OAT. We did not do muscle biopsy so we do not know if our mito> dysfunction is "mito disease."> > Are you talking about "inborn errors of metabolism?" That's generally> determined at birth, with the heel-stick.> > If you mean something else, I'm sorry, I didn't quite understand the> question. :-)> > When you said "treating a metabolic disorder," well I guess we are... since> we are giving vitamins to support methylation that has been impaired.>

> Hope that helps! :-)> > -- > Toni> > ------> Mind like a steel trap...> Rusty and illegal in 37 states.>

[Guest guest]

Jakes Mom

When you say you have 7 years of biomed could you list what you have used? Is

the Ped the one that helped you with the biomed? Has the same thing been used

for the last year?

Is he on meds now? Biomed or Rx? Was this a sudden regression a year ago after

complete recovery?

You have had some good suggestions. I agree it probably is a metabolic disorder

as part of the package.

Thyroid issues. Probably some adrenal. He most likely has a variety of virus,

and/or bacteria and yeast. He most likely has parasites. Maybe strep. Metals.

His ability to absorb nutrients is messed up because of any and all of those. So

he probably has mineral deficiencies. His liver is having issues trying to keep

up with the waste and fats. Which effects his gallbladder. He is most likely

iodine deficient.

If he was healthy (completely) without issues for the 7 years on biomed, is

still on biomed and this is a sudden regression it could be the beginning of

puberty has changed the equation. Or it could have been triggered by a stronger

virus or an accumulation of years of things being sorta off.

If he was mostly healthy for the 7 years but had some health or behavioral

issues the change in hormones could still be the trigger but could also mean

that the underlying cause of the issues is still there but the biomed helped the

body function better to an extent.

I dont know what kind of Ped you have now, mainstream or Dan! or what. ly i

dont get how the Ped, if it was this Ped, let him go a year of falling down. Was

he not worried about it?

If you are into tests I would check his thyroid levels. If this was already

done and ruled out you need to make sure they checked the right things.

http://www.stopthethyroidmadness.com/recommended-labwork/

Adrenal function could be tested. Has he had a mineral test? That is one i would

suggest (if you like to test and its available) . Especially to get a baseline

so you know you see improvement but also because if done correctly it can help

you see what isnt being utilized or that you need to supplement. If he hasnt had

a hormone test that might be indicated.

If you arent into tests or waiting for tests or if you feel confident doing

biomed and i would think you probably are after so long then I would suggest:

MB12 (Agree with 's post).

If he is not being supplemented (or eating the food equivelent and really most

cant, ok maybe the people that Juice might can ;-)) he most likely needs:

Lugols Iodine, Magnesium(Magnesium Chloride or Malate), D3, Vit C (tho the need

for C is giving me fits now cause of its relation to high oxalate) Se, B

Vitamins Especially B2,B3, B6, B8, B12 and maybe Bs 5,7,9. Probably need the

most bio-available forms.

He needs Natural Minimally to Non Processed Sea Salt. He needs lots of clean

water. He probably needs Probiotics.

He may need Tyrosine. He may need enzymes. He may need Valtex or other

antiviral (curious if that was part of your protocol). He may need a Parasite

treatment.

The Low Oxalate Diet might be good. Have you done diets? Did it do any good? I

have only in the last few weeks been studying the LOD (after s post made it

so clear!) and its connection to making the body utilize the iodine it has more

effectively as well as removing the oxalate and probably the other halides. Same

principal as goitrogens (foods that inhibit iodine). At least i think so based

on what i know so far! Still trying to figure out how to Get C, or equivelent

antioxident since C appears to be a goitrogen!

So after writing this book I am still curious (and it may effect what i have

suggested) what biomed you used, and have used in the last year as well as what

symptoms/issues were still showing (if any) during the 7 years as compared to

the last year.

Cheryl

> >

> > Toni, Pamela,

> >

> > My son was dx w autism at two and a half yo. He is 9 now. A year ago he

started falling down for no reason. Has been losing skills and all his words.

Had febrile seizures at one y o and now again this year. mRI came back abnormal.

Numerous health issues with GI problems has gall stones . Other symptoms

inlclude weakness,fecal and urine incontinence and recurrent UTI. Five to be

exact. Since the MRI his pediatrician now suspects metabolic disorder and were

doing more testing. After 7 years of biomed he is now regressing.waiting to see

metabolic doctor.

> >

> > I would appreciate to hear from any of you dealing with a dx metabolic

disorder or even suspect one.

> >

> > Thank u in advance...jakes mom

[Guest guest]

Nikki,My favorite thing to post about is low oxalate diet. I am sure most people are sick of hearing about it. Tee hee.But anyway... oxalate can cause seizures. Dumping oxalate can cause urinary incontinence. " Recurrent UTI " could be related to oxalate (this summer while dumping oxalate, I had a UTI with bacteria and oxalate crystals in my urine)

We don't know the connection but most of the women on the LOD group (low oxalate diet - yahoo group trying_low_oxalates)have complained of gall stones. For instance in my case, after the birth of my son, I developed GB attacks. This was in conjunction with a new allergy. And I had a rash that would flare up, for unknown reasons. (After going LOD, the rash has disappeared. It only slightly went away with GFCF diet) (The gall stone thing just might be a symptom of fat maldigestion, and in some cases fats can be converted to oxalate)

I was eating an extremely high oxalate diet.High oxalate diet example would be spinach, almonds, other nuts, chocolate, beets, celery. Clementine tangerines are actually high too, and I mention this because I was prone to eat a " healthy " diet of spinach salad, with nuts, and clementines.

I really urge people who have leaky guts to reduce their oxalate even if they can't go low. The nice thing about LOD is it is not a complete elimination diet (although most people do eliminate fully the super high things) but one where a person uses portion size to control the oxalate.

Hopefully Owens will see this post. She is a researcher for the ARI (autism research institute) and she runs the other list serve. She can pretty much find 10 studies to back up anything she says, so in general it's not " hearsay, " ya know? The low oxalate diet is used " officially " in people with kidney failure and kidney stones, and women with vulvodynia (pain in the you know where)

What does oxalate do? The insoluble portion binds with your minerals and steals them from your body. What is soluble is absorbed by your cells, and oxalate inside the cells can disable mitochondrial enzymes and use up mitochondrial transporters so that your body's whole function is crippled.

Oxalate can cause what you call " metabolic disorder. " !!!

 

Toni, Pamela,

My son was dx w autism at two and a half yo. He is 9 now. A year ago he started falling down for no reason. Has been losing skills and all his words. Had febrile seizures at one y o and now again this year. mRI came back abnormal. Numerous health issues with GI problems has gall stones . Other symptoms inlclude weakness,fecal and urine incontinence and recurrent UTI. Five to be exact. Since the MRI his pediatrician now suspects metabolic disorder and were doing more testing. After 7 years of biomed he is now regressing.waiting to see metabolic doctor.

I would appreciate to hear from any of you dealing with a dx metabolic disorder or even suspect one.

Thank u in advance...jakes mom

>

> Also why I didn't reply. Need more details.

>

>

>

> Pamela

>

>

>

> From: mb12 valtrex [mailto:mb12 valtrex ] On

> Behalf Of Toni Marie Lombardo

> Sent: Thursday, February 24, 2011 8:45 PM

> To: mb12 valtrex

> Subject: Re: Second post...anyone treating child with

> metabolic disorder? Pls reply.thx

>

>

>

>

>

> I did not respond to this post because " metabolic disorder " has no meaning

> to me. I mean to say, it would seem all our kids have some disorder of

> metabolism.

>

> We have 13 SNPs as determined with Yasko testing, two of which are the 677

> and 1298 MTHFR. We have mitochondrial dysfunction in my daughter as

> determined by OAT. We did not do muscle biopsy so we do not know if our mito

> dysfunction is " mito disease. "

>

> Are you talking about " inborn errors of metabolism? " That's generally

> determined at birth, with the heel-stick.

>

> If you mean something else, I'm sorry, I didn't quite understand the

> question. :-)

>

> When you said " treating a metabolic disorder, " well I guess we are... since

> we are giving vitamins to support methylation that has been impaired.

>

> Hope that helps! :-)

>

> --

> Toni

>

> ------

> Mind like a steel trap...

> Rusty and illegal in 37 states.

>

-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.