Mitochondrial dysfunction and PANDAS

[PatAnne]

For all of the parents on this forum with a child anywhere on the ASD spectrum, look as hard as you can in this direction too! I have thirteen year old with a history of PANDAS and regression/stalling out during illness. By regression I mean his speech is backwards, he is too fatiqued to think or do school work, heat intolerence, and frequent illness, mood swings, exercise intolerence.

He also has a C4 deficiency and his lynphocyte panel is pretty poor. I've looked briefly at Camkinase and how this is actually related to mito functioning and cholesterol transport.. Mitochondrial dysfunction also seems to be related to bipolar disorder...So, although this science is ALSO still in it's infancy,and firm diagnosis can take years, a trial of a good CoQ10 (Tischcon Cyto-Q ubiquinol) and Levocarnitine might help many kids. My son STILL needs constant abx's but these vitamins (as well as others) are really helping him. FWIW..

[Chemar]

I know longterm use of antibiotics is a lifesaver for most kids with PANDAS, so this is not in any way suggesting not to use them!

 

This topic just caught my attention as I have been looking into mitochondrial stuff related to something else

 

 

 

Is there any study being done on the effect of the antibiotics on mito function in PANDAS kids or others who have to be on regular antibiotics for their illness.

 

I recall reading some reports a while back from the Autism community on findings of mito dysfunction in autistic kids after long term antibiotics

 

If PANDAS children are already exhibiting mito dysfunction, is there some need for concern re this aspect of potential side effect from long term antibiotic use?

[PatAnne]

Interesting question, but in my case I saw what was probably mito in my Dad, It just did not have a name back then because only the most severe form known of mito "disease" got any notice (a severe neuro/physical decline illness). Mito experts now feel up to 20-50% of ASD's may involve mito dysfuntion. Any history of regression is a red flag.

For my son, I think an underlying mito disoder or vulnerability, caused the adverse vaccine reactions and regressions, and the antibiotics helped to cool the constant immune uproar. Of course so much is "chicken or egg" thinking

!

BTW, Heavy metals can also cause mito dysfunction. Vaccines are still full of aluminum.

 

 

I know longterm use of antibiotics is a lifesaver for most kids with PANDAS, so this is not in any way suggesting not to use them!

 

This topic just caught my attention as I have been looking into mitochondrial stuff related to something else

 

 

 

Is there any study being done on the effect of the antibiotics on mito function in PANDAS kids or others who have to be on regular antibiotics for their illness.

 

I recall reading some reports a while back from the Autism community on findings of mito dysfunction in autistic kids after long term antibiotics

 

If PANDAS children are already exhibiting mito dysfunction, is there some need for concern re this aspect of potential side effect from long term antibiotic use?

[Kayanne]

I know longterm use of antibiotics is a lifesaver for most kids with PANDAS, so this is not in any way suggesting not to use them!

 

This topic just caught my attention as I have been looking into mitochondrial stuff related to something else

 

 

 

Is there any study being done on the effect of the antibiotics on mito function in PANDAS kids or others who have to be on regular antibiotics for their illness.

 

I recall reading some reports a while back from the Autism community on findings of mito dysfunction in autistic kids after long term antibiotics

 

If PANDAS children are already exhibiting mito dysfunction, is there some need for concern re this aspect of potential side effect from long term antibiotic use?

 

Interesting....Chemar, could you recommend a good website to get an overview of "mitochondrial stuff"?

 

I think it is important with any drug or supplement, to be aware of side effects of long term use--PANDAS is certainly one of those cases where the benefits outweight the risks...but as parents we still need to try be aware of vitamin depletion, and digestive issues from long term antibiotics.

 

My daughter takes antibiotics every day so, Chemar, I appreciate the heads up about this.

 

~Karen

[Suzan]

My dd7 had mitocontrial markers when we went through extensive testing starting in 2007 or 2008 while I was trying to figure out what was wrong with her. She took CoQ10 and levocarnitine for a long time. I wonder at times if we should start them up again. They did really help at the time. Once she was on a dose of levocarnitine that was too high and it started making her smell like fish. That was our tell tale sign to reduce the dose. Once she got off all seizure meds, was gluten free and treated for strep, we slowly got her off all her supplements. But I would like to have her mito marker tests re-done to see how she's doing now.

 

susan

[momaine]

For all of the parents on this forum with a child anywhere on the ASD spectrum, look as hard as you can in this direction too! I have thirteen year old with a history of PANDAS and regression/stalling out during illness. By regression I mean his speech is backwards, he is too fatiqued to think or do school work, heat intolerence, and frequent illness, mood swings, exercise intolerence.

He also has a C4 deficiency and his lynphocyte panel is pretty poor. I've looked briefly at Camkinase and how this is actually related to mito functioning and cholesterol transport.. Mitochondrial dysfunction also seems to be related to bipolar disorder...So, although this science is ALSO still in it's infancy,and firm diagnosis can take years, a trial of a good CoQ10 (Tischcon Cyto-Q ubiquinol) and Levocarnitine might help many kids. My son STILL needs constant abx's but these vitamins (as well as others) are really helping him. FWIW..

 

What is ASD spectrum? It would help some of us if you would write the whole name the first time in a post. Thank you. NVM, you are probably taking about Autism Spectrum, right?

Angela

[Chemar]

Interesting....Chemar, could you recommend a good website to get an overview of "mitochondrial stuff"?

 

I think it is important with any drug or supplement, to be aware of side effects of long term use--PANDAS is certainly one of those cases where the benefits outweight the risks...but as parents we still need to try be aware of vitamin depletion, and digestive issues from long term antibiotics.

 

My daughter takes antibiotics every day so, Chemar, I appreciate the heads up about this.

 

~Karen

 

Hi

I have quite a lot of websites I have been looking at , but here are a few relevant to mito function and antibiotics

http://www.mitoaction.org/blog/may-mito-me...ty-mitochondria

 

http://americandrugdiscovery.com/ViewArtic...x?ContentID=758

 

http://www.autism.com/medical/research/adv...antibiotics.htm

 

http://www.thebody.com/content/art1976.html

 

 

I have lots more but that is a start

 

the last one is related to HIV but has a really excellent description of mito function/damage potential of drugs

[MichaelTampa]

According to a book I've read recently, that seems to fit my experience quite a bit, mitochondrial dysfunction is common in chronic diseases like chronic fatigue syndrome, mutiple chemical sensitivity, fibromyalgia, and PTSD--all conditions where nitric oxide levels are too high. The book also makes brief mention of lyme and rheumatoid arthritis/fever, and I really believe PANDAS fits into this category, based on my experience and from what I read on this board. Yes, CoQ10 can help (but have to admit, while I've taken many supplements, I've never tried this one, but not for any significant reason).

 

Michael