carmitine and siezures

[Guest guest]

Hmmmm... have you considered Lyme? Pressing on eyeballs can be an indication for oxalates, but not always. Sometimes, it's simply eye pain/pressure. Air hunger, night waking could all indicate Lyme. The flapping and giggling could be bacterial. Check out this nifty little symptoms chart. Here it describes pulsing feelings in the throat, pain and pressure of the eye, sleep disturbances etc. etc.http://www.lyme-symptoms.com/LymeCoinfectionChart.html Your son will not drink water? How about colorless cherry flavored electrolyte water? *During our GFCF experience, I've found that my younger son does much better with small amouns of dairy. We keep it organic, in small amounts, and generally limit it to kefir and yogurt. (Once in a blue moon, cheese). It's definitely not something he can have everyday. His sinuses become stuffy and his exzema flairs. My guess would be he needs the calcium because of his refusal to eat vegetables (our biggest hurdle. And on my list of goals for 2012). -Tammy To: "mb12valtrex " <mb12valtrex > Sent: Friday, December 30, 2011 10:50 AM Subject: Re: carmitine and siezures

Alyssa,

I read info on the folinic acid or folate issue and asked out DAN to test him if possible, she said she would just prefer to start him on the leucovarin. So, while i was waiting for the RX, I started him on folinic acid at high doses, and kept increasing so I would gear him up for the leucovarin. I was seeing nice results with attention and some energy, however 3 days into the leucovarjn , I lost him into his world again, stopped the RX, he came back. So, I think it was too high and now afraid to start any of it again.

I will read all of your post and think of more questions, but I just feel so damned if you do/damned if you don't! I feel like we are running out of foods and drink choices. Feel like I can no longer tell what supplements work or not.

He has been GFCF for 2 years, strict Spectrum Protocol diet for about 6 months, then this Thanksgiving, it became evident he has phenols and oxalate issues, so, I have removed the foods. Except for rice milk, I felt it was the lesser of 2 evils with regards to oxalates. He refuses coconut milk. I even tried to give him cow's milk- gasp- because I feared dehydration. He refused that as well. However, he did drink some and I saw no negative reaction to it. I have given him a spoonful of greek yogurt each day this last week, no issues with that either. So, wondering, if dairy is not an issue for him and I can let him small amounts?

He has come a long way, last year, I could not even get off the floor, he zero energy.

My current issues are: what to give him to drink minus diluted cherry juice with coconut water?

What are yeast symptoms? He did horrible on Diflucan, now he is going to get amphotericin B, which i am scared to even give to him.

He swallows so hard and constantly, pushing tons of air in his belly? Sticks his whole hand down his throat- though that has improved some with removal of sweet potatoes-odd?

He is waking up at very early hours-way before the sun.

He giggles and runs around flapping- could he have Angelmans as well?

He pushes his thumbs in his eyes?

And since starting no phenols, oxalates, salicylates diet, his urine stinks so bad and his poop is like sludge?

What am I looking for with milk issues?

This consumes me!

Beth

Sent from my iPad

[Guest guest]

Interesting - I was just reading about stinky urine warranting Ketone labs which could indicate (among other things) fatty acid metabolism. Crazy. -Tammy To: mb12valtrex Sent: Friday, December 30, 2011 11:31 AM Subject: Re: Re: carmitine and siezures

I personally think this is somehow linked to not processing fatty acids correctly. My older son has this symptom too and it's always worse during cold months. He has a lot of disruptions in his acylcarnitine profile suggesting disruption in processing of long chain fats. He's had the genetic testing for vlcad, very long chain fatty acid oxidation defect, but it was "normal"/negative. And he goes wild on some supplemental oils... Mct oil seems to be best for him.Peace and improved health in the new year!Alyssa

From:

Duciaome ;

To:

mb12valtrex <mb12valtrex >;

Subject:

Re: carmitine and siezures

Sent:

Fri, Dec 30, 2011 4:09:03 PM

One more concern is which just started is: cracked lips, deep and bloody?

Also, wanted to add, he had a mouth swab at St s through a research program that determined his extreme deficiency in complex 4. I have another son with DS that they used as a control. Very interesting stuff that I so wish I was not a part of!

Sent from my iPad

[Guest guest]

Beth,

I know some ASD kids are being tested for Angelman Syndrome when they have their genetic work up.

Some kids with OXPHOS disorders have disruptions in calcium homeostasis, at a cellular level. However, getting confirmation from any MD, right now, about whether this is truly an issue in your child or not, would be extremely challenging. In the case of my older son, I have wondered if this is why he was a dramatic responder to the removal of dairy. He was in a fog prior to removing dairy and he had self-limitied to an ALL dairy diet... so when we removed it, he was in a RAGE... it completely changed his personality. WHY... ? Maybe extracellular calcium accumulation? Calcium signaling problems? Clearly, some issue...

Milk issues for our son were; "fogged out, opiate effect", red ears, red cheeks, eczema, skin rashes, adverse behavior after eating... could also be diarrhea and/or constipation.

My younger son had a dramatic response to LC... HUGE gains in receptive language in just 6 weeks. BUT, my older son, who had many ASD features, could not tolerate LC... It made him wildly hyperactive and his hair started to thin. It wasn't a good choice for him but he still needed folate.

So he takes Metagenics B12/folate with intrinsic factor and folopro.

http://www.metagenics.com/products/a-z-products-list/Intrinsi-B12-Folate

http://www.metagenics.com/products/a-z-products-list/FolaPro

To give you a perspective of dosing comparables, a 5 mg (starting dose) Leucovorin pill is 5,000 mcg.

Our older son has been the tougher nut to crack interestingly... and when we started biomed, and the mito cocktail with him, we also had times that we would pull back supplements and start anew... or we would go back to a baseline cocktail where we felt he was doing well, and build from there. This same son does not do well on coconut milk either. I tried it again recently, without success.

When my son gets "off" we have had luck using Nystatin... for a short course, 5-7 days. He has "seasonal attentional/behavioral regressions". Where he will get very hyper when the seasons change, from spring to summer and fall to winter. The mito MD's think it's due to dysautonomia, and the body having trouble regulating temperature. The mechanism of action, why Nystatin really helps him during these "off" periods, I do not think we fully understand. Our biomed MD says it's "yeast"... but I think it's much much more complex than that.

I found these about amphotericin B... sounds concerning. Please discuss with MD, before you start.

Antimicrob Agents Chemother. 2009 Apr;53(4):1420-6. Epub 2009 Jan 12.

Amphotericin B-induced renal tubular cell injury is mediated by Na+ Influx through ion-permeable pores and subsequent activation of mitogen-activated protein kinases and elevation of intracellular Ca2+ concentration.

Yano T, Itoh Y, Kawamura E, Maeda A, Egashira N, Nishida M, Kurose H, Oishi

R.

Source

Department of Pharmacy, Kyushu University Hospital, Fukuoka, Japan. tyano@...

Abstract

Amphotericin B (AMB) is one of the most effective antifungal agents; however, its use is often limited by the occurrence of adverse events, especially nephrotoxicity. The present study was designed to determine the possible mechanisms underlying the nephrotoxic action of AMB. The exposure of a porcine proximal renal tubular cell line (LLC-PK1 cells) to AMB caused cell injury, as assessed by mitochondrial enzyme activity, the leakage of lactate dehydrogenase, and tissue ATP depletion. Propidium iodide uptake was enhanced, while terminal deoxynucleotidyl transferase-mediated dUTP nick end labeling was not affected by AMB, suggesting a lack of involvement of apoptosis in AMB-induced cell injury. The cell injury was inhibited by the depletion of membrane cholesterol with methyl-beta-cyclodextrin, which lowered the extracellular Na(+) concentration or the chelation of intracellular Ca(2+). The rise in the intracellular Ca(2+)

concentration may be mediated through the activation of the ryanodine receptor (RyR) on the endoplasmic reticulum and the mitochondrial Na(+)-Ca(2+) exchanger, since cell injury was attenuated by dantrolene (an RyR antagonist) and CGP37157 (an Na(+)-Ca(2+) exchanger inhibitor). Moreover, AMB-induced cell injury was reversed by PD169316 (a p38 mitogen-activated protein [MAP] kinase inhibitor), c-Jun N-terminal kinase inhibitor II, and PD98059 (a MEK1/2 inhibitor). The phosphorylations of these MAP kinases were enhanced by AMB in a calcium-independent manner, suggesting the involvement of MAP kinases in AMB-induced cell injury. These findings suggest that Na(+) entry through membrane pores formed by the association of AMB with membrane cholesterol leads to the activation of MAP kinases and the elevation of the intracellular Ca(2+) concentration, leading to renal tubular cell injury.

PMID:19139282

Glia. 2001 Sep;35(3):180-8.

Amphotericin B potentiates the activation of inducible nitric oxide synthase and causes nitric oxide-dependent mitochondrial dysfunction in cytokine-treated rodent astrocytes.

Trajkovic V, Markovic M, Samardzic T, Miljkovic DJ, Popadic D, Mostarica Stojkovic M.

Source

Institute of Microbiology and Immunology, School of Medicine, University of Belgrade, Belgrade, Yugoslavia. vladtr@...

Abstract

Because the neurotoxic effects of the antifungal drug amphotericin B (AMB) closely resemble those ascribed to the highly reactive gaseous free radical nitric oxide (NO), we investigated the effect of AMB on NO production in rodent astrocytes. AMB caused a dose-dependent increase of NO generation in interferon-gamma (IFN-gamma)-stimulated rat and mouse astrocytes, as well as in IFN-gamma + tumor necrosis factor-alpha (TNF-alpha)-activated rat astrocytoma cell line C6. Treatment of rat astrocytes with AMB markedly potentiated IFN-gamma-triggered expression of mRNA for iNOS, but not for its transcription factor IRF-1. The activation of transcription factor NF-kappaB was apparently required for AMB-induced iNOS mRNA expression, as the latter was abolished by NF-kappaB inhibitors: pyrrolidine dithiocarbamate and MG132. AMB-mediated enhancement of astrocyte NO production was partly

dependent on endogenous IL-1, as shown by partial inhibition of AMB effect with IL-1 receptor antagonist. IFN-gamma + AMB treatment led to reduction of astrocyte mitochondrial respiration (measured by MTT assay) that has been completely reverted by selective iNOS inhibitor aminoguanidine. AMB toxicity toward IFN-gamma-stimulated astrocytes was dependent on both AMB and NO action, since AMB and NO-releasing substance SNP synergized in inducing astrocyte mitochondrial dysfunction. These results suggest that the enhancement of cytokine-induced iNOS activation in astrocytes and the subsequent release of high amounts of NO might be at least partly responsible for AMB neurotoxicity.

Copyright 2001 Wiley-Liss, Inc.

PMID: 11494409

Protein (rice) shakes have worked well for us... I like this product. Although it's $$$, it's great. Sunwarrior Protein

http://www.opentip.com/Health-Beauty/Sunwarrior-Protein-Powder-p-2149627.html

Hang in there, I know the challenges are great... and many! ...Your children are lucky to have you! ;0)

Alyssa

To: "mb12valtrex " <mb12valtrex > Sent: Friday, December 30, 2011 10:50 AMSubject: Re: carmitine and siezures

Alyssa,I read info on the folinic acid or folate issue and asked out DAN to test him if possible, she said she would just prefer to start him on the leucovarin. So, while i was waiting for the RX, I started him on folinic acid at high doses, and kept increasing so I would gear him up for the leucovarin. I was seeing nice results with attention and some energy, however 3 days into the leucovarjn , I lost him into his world again, stopped the RX, he came back. So, I think it was too high and now afraid to start any of it again. I will read all of your post and think of more questions, but I just feel so damned if you do/damned if you don't! I feel like we are running out of foods and drink choices. Feel like I can no longer tell what supplements work or not.He has been GFCF for 2 years, strict Spectrum Protocol diet for about 6 months, then this Thanksgiving, it became evident he has phenols and oxalate issues, so, I have

removed the foods. Except for rice milk, I felt it was the lesser of 2 evils with regards to oxalates. He refuses coconut milk. I even tried to give him cow's milk- gasp- because I feared dehydration. He refused that as well. However, he did drink some and I saw no negative reaction to it. I have given him a spoonful of greek yogurt each day this last week, no issues with that either. So, wondering, if dairy is not an issue for him and I can let him small amounts?He has come a long way, last year, I could not even get off the floor, he zero energy.My current issues are: what to give him to drink minus diluted cherry juice with coconut water?What are yeast symptoms? He did horrible on Diflucan, now he is going to get amphotericin B, which i am scared to even give to him.He swallows so hard and constantly, pushing tons of air in his belly? Sticks his whole hand down his throat- though that has improved some with removal of sweet

potatoes-odd?He is waking up at very early hours-way before the sun.He giggles and runs around flapping- could he have Angelmans as well?He pushes his thumbs in his eyes?And since starting no phenols, oxalates, salicylates diet, his urine stinks so bad and his poop is like sludge? What am I looking for with milk issues?This consumes me!BethSent from my iPad

[Guest guest]

i dont remember if someone mentioned this or not but what comes to my mind is vitamin A and B complex..in particular B2

To: "mb12valtrex " <mb12valtrex > Sent: Friday, December 30, 2011 11:09 AMSubject: Re: carmitine and siezures

One more concern is which just started is: cracked lips, deep and bloody?Also, wanted to add, he had a mouth swab at St s through a research program that determined his extreme deficiency in complex 4. I have another son with DS that they used as a control. Very interesting stuff that I so wish I was not a part of! Sent from my iPad

[Guest guest]

Channa,I am sure the cracked lips is a B vitamin deficiency, I just never remember which one. ;-)I am avoiding looking it up b/c I am trying not to spend too much time online this week!

 

i dont remember if someone mentioned this or not but what comes to my mind is vitamin A and B complex..in particular B2

To: " mb12valtrex " <mb12valtrex >

Sent: Friday, December 30, 2011 11:09 AMSubject: Re: carmitine and siezures

 

One more concern is which just started is: cracked lips, deep and bloody?Also, wanted to add, he had a mouth swab at St s through a research program that determined his extreme deficiency in complex 4. I have another son with DS that they used as a control. Very interesting stuff that I so wish I was not a part of!

Sent from my iPad

-- --------------------------------------------------------------------------------------------Click to find info about Vitamins and Minerals:http://www.facebook.com/note.php?note_id=10150543521682565

--------------------------------------------------------------------------------------------Click to find links to info about the Low Oxalate Diet :http://www.facebook.com/note.php?note_id=10150543495292565

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

[Guest guest]

Deficiency in either vitamin B6, vitamin D, or vitamin A are possibilities.

Vitamin A toxicity can produce the same symptom. I have also heard viral

die-off can cause it. Clear as mud, right?

Cathy

>

> > **

> >

> >

> > i dont remember if someone mentioned this or not but what comes to my mind

> > is vitamin A and B complex..in particular B2

> >

> > *From:* Duciaome

> > *To:* " mb12valtrex " <mb12valtrex >

> > *Sent:* Friday, December 30, 2011 11:09 AM

> >

> > *Subject:* Re: carmitine and siezures

> >

> >

> > One more concern is which just started is: cracked lips, deep and bloody?

> >