Chemar

[kim]

Cheri,

 

I think you have been doing research on autoimmunity lately?

 

I'm getting the feeling that we might be a little btwn a rock and a hard place here. On one hand, we're trying to support the immune system and remove sources of irritation like allergies and food sensitivities, control yeast etc. But immune system boosting supplements could possibly make conditions our kids might be dealing with worse in some instances, it would seem.

 

If you suspect that your child is having an hyper immune respone to an illness, of even a normal response, but it's attacking body tissue, as in the suspected cases of PANDAS, and type 1 diabetes, might we need to think about not using supplements that would boost the immune system?

 

Second question, in regards to genetically inhereted TS, say Dad was exposed to high levels of mercury, or another toxin, at some point. Maybe Grandpa drank well water that was loaded with copper or something else. Can this alter a gene, that could be passed on? Do you have any knowledge in this area?

 

Any thoughts you have would be appreciated. I'm about "researched" out

 

Kim

[Chemar]

Hi Kim

 

re the immunity...yes! sadly where immuno boosting is so good for overall health and also for people with tic and tourette disorders, yet by supercharging the immune system and not knowing there are autoimmune issues going on, one makes things worse

A key issue that I am beginning to look at is hypersensitivity to medications etc as to whether that could be a clue as to an overactive immune system

My son always reacted (and still does) so dramatically to meds, and even with supps, we always give the most miniscule amount first and move up as he frequently cant tolerate even the RDA

 

It is strongly believed by one of his physicians and by me that my son's aquisition of Crohn's Disease is related to the toxic stew of drugs he was put on during that first year after the TS diagnosis There were side effects that were obvious to us and that is why we withdrew him from the meds...but the deeper and more insiduous damage to his system only became evident years later

 

Thankfully, because of his special nutritional program for TS, along with all the other good stuff we had done in eliminating the candida, metals etc, it is proving easier to keep his Crohn's symptoms down and the flare ups are way less than we had been prepared for...........again using a good diet and optimal supplements is making all the difference here.

 

But as I mentioned in another thread...all the immune boosting supps have had to go now because Crohn's is an autoimmune disease, and so this makes him so much more susceptible to colds etc.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

re the genetics....well, something has to make genes go out of whack in the first place tho whether it is as specific as a finite generational thing.....hmmmm, I havent seen any reference to that.

 

But certainly I do think that, where the gene is inherited, something happens, either internally or externally or perhaps both, to make it switch on and result in the manifestations of the TS symptoms

 

I have no idea whether my older son inherited the gene too. He is 20 and has never shown any sign of TS, whereas the younger likely ticced from a very young age, although we didnt get a dx till he was 10

However, looking back on his infancy, I honestly feel that the tics were there but we did not recognise them as tics

 

My husband remembers ticcing from the time he can remember........and unfortunately it isnt possible to get info from his mom as she refuses to acknowledge the link! It is very evident to us, now that we know about TS, that my husband's dad had TS quite severely, especially vocal tics

 

I dont know if it has any significance but I had a very rough pregnancy with the younger. nauseous continuously.........whereas with my firstborn, it was a very easy pregnancy.

 

So many other factors to consider too.............

[kim]

Cheri,

 

Any clue here?

 

http://www.emedicine.com/NEURO/topic680.htm

 

 

The signs and symptoms of acute intermittent porphyria probably result from the accumulation of 2 neurotoxic metabolites in the pathway of porphyrin synthesis, delta-amino levulinic acid and porphobilinogen (see Porphyrias). The clinical disease may be associated with attacks of sensory neuropathy, ataxia, psychosis, and even coma, and occurs when a patient with the polymorphism or genetic predisposition ingests a drug or eats food that precipitously increases the synthesis of porphyrins. These precipitants include phenytoin, strawberries, or any one of the long list of potentially harmful substances outlined in the article on porphyrias. With a sudden demand on this metabolic pathway and up-regulation of enzymes to synthesize porphyrins combined with the inherited partial deficiency of uroporphyrinogen I synthetase, the toxic metabolites accumulate and cause damage to neural tissues, resulting in clinical symptoms.

[Chemar]

wow! lots to take in there Kim and I may need mrsD to translate

 

thanks, I will spend some time looking at that info

 

my son was relatively med free as a child and did not even have antibiotics. His first real exposure to meds was at age 10, with the dreaded brain drugs for his TS/OCD (tho of course he did have those childhood vaccinations )

[kim]

Cheri,

 

This was interesting, but it referrs to Mom passing down the gunk.

 

http://www.organicconsumers.org/Politics/toxins060605.cfm

 

What Washington State University researchers discovered -- and report this week in the journal Science -- is that such changes can be passed from generation to generation. This, suffice it to say, flies in the face of some fairly central assumptions in biology.

 

The reference to vit D is kind of interesting here.

 

When good cells go bad

The origins of autoimmune disease: a role for vitamin D?

http://www.naturalfoodsmerchandiser.com/AS...amp;Screen=HOME

[Chemar]

that is very interesting stuff Kim

 

My son has been on extra VitD since we got the Crohn's dx as my research then kept showing vitD as important in IBS

 

and yes, I have long believed that toxins impact our bodies in ways we havent even begun to understand!

and that the generations that follow can be severely impacted

 

 

Thank goodness the malathione poisoning I suffered when sprayed by a plane during an early morning walk on the beach on Captiva Island ocurred after I had kids, as who knows what that has truly done to me

[kim]

Removing link that doesn't work

[jacobsmom]

Chemar,

I am so confused! Regarding your post....that says...

 

~~"re the immunity...yes! sadly where immuno boosting is so good for overall health and also for people with tic and tourette disorders, yet by supercharging the immune system and not knowing there are autoimmune issues going on, one makes things worse"~~

 

This is the first time I have ever heard of this! However, it makes sense.

 

He has PANDAS and is on penecilin VK 250 mg twice a day and I want to get him off of them soon. I do think that PANDAS has to do with autoimmune problems and I am at a total loss!! I have been giving my son all kinds of things to boost his immune system such as

 

Omegas

Calcium Magnesium

Probiotics

L Glutamine

Amino Acids

Vitamin Shake

 

All of these should be good for a healthy immune system. But am I harming him? Who do we go to who works with autoimmune issues? What type of doctor? We have a chiropractor, accupuncturist, neurologist, naturopath, pediatrician, environmental physician, and an ENT. I have never been told this although no one knows that much about PANDAS but I have mentioned that I believe it is an autoimmune type of disorder. Has it been proven to be autoimmune? Thank you so much for answering!

[Chemar]

Hi jacobsmom

 

By it's very name PANDAS is an autoimmune illness.........an autoimmune response to streptococcus

 

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infection

 

I dont know about the protocol in PANDAS treatment, but I do know that with all other autoimmune illnesses one tried to calm the immune system, not boost it.

 

I dont like the way the std medications for most autoimmune illnesses focus on totally suppressing the immune system as I just know instinctively that is wrong.........and so many people who are treated with the corticosteroids etc for autoimmunity end up getting other illnesses because of the immuno-suppression

 

Instead, I feel one should just try not to provide foods or supplements that are potent immuno-boosters, while still recognising that the immune system IS the bodies first line of defense

 

My advice to you would be to do some research re the specific type of automimmunity issues associated with PANDAS and then look into the supps that way

 

My son still gets his daily multivitamin/mineral (in liquid form for easier absorption) plus his probiotic and enzymes, along with most of the supps we found beneficial for his tics (magnesium/calcium/zinc/taurine/inositol/extraVit B6/flaxseed oil) and, when needed, 5HTP for his OCD (hardly ever a problem anymore)

 

Essentially the only supps we have discontinued are the omega 6&9 essential fatty acids (omega 3 reduces inflammation while the 6&9 promote it) as well as the super potent immuno boosters like grapeseed extract/pycnogenol, bilberry, and the extra vit E,C, beta carotene etc

 

I must emphatically stress that immune boosters are GOOD for people with TS/tics and that the ONLY reason we have discontinued them is because of my son having autoimmune issues with the Crohn's

 

so, jacobsmom, looking at what your son is getting..............

firstly, I need to stress that I really dont know enough about the underlying biochemistry of people with PANDAS to comment other than from my personal opinion here.

 

I dont know what is in your vitamin shake, but is it is just the RDA of vitamins and minerals that should be fine

Although some of the vitamins (especially C & E) are immune supportive, still you should not totally stop them because their other functions are too important

 

The L-glutamine is such a good supp, but, yes, it is known to support the sells of the immune system and so perhaps that one should be discontinued until your son is in remission (but do first discuss this with your doctor)

 

The probiotics are essential always and especially so when a person is or has been on antibitoics

 

The EFAs are also good for overall health and, provided that inflammation isnt a problem, 3,6&9 in a good balance with the 3 predominating is fine...if there is inflammation, only Omega 3 should be supplemented

 

As to amino acids per se, there one does have to be careful. With tic disorders, including TS, some amino acids stimulate dopamine and that increases tics.

We were advised years ago not to give my son a general amino acid supp, but only the ones specifically required for tic reduction(eg taurine) and even then, with caution as some people react to amino acids differently than others (eg L-carnitine helps many with tics, my son gets edgy and disorientated from it)

I honestly dont know which amino acids are contraindicated in PANDAS

 

sorry I cant be more helpful than this, but, never having personally dealt with PANDAS, my knowledge is scanty there, and the whole research into autoimmunity is still fairly new to me as my son was only dx with Crohn's this past summer

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

BTW for anyone interested, to treat the Crohn's Disease, my son takes, in addition to careful diet, boswellin/curcumin(turmeric), ginger, garlic and white willow bark as anti-inflammatory supplements as well as slippery elm, L-Glutamine & Marshmallow root which are excellent for the mucosal lining of the gut, and DGL Licorice root which promotes healing of inflamed and ulcerated tissue, and he also has cramp bark on hand in case of spasms, plus chamomille supps for generally calming the system and monolaurin to keep microbes under control. Extra Vit D has also been added

Although L-glutamine helps the cells of the immune system, yet its function in digestive healing far outweighs this and our physicians agree that it is important for my son to take it

[quan_daniel]

Cheri,

How does he take all this supplement...at once on spread through out the day...

They sound overwhelming..

I am just curious...Management on taking supplement given to kids is very difficult..

I hope I can learn more..

Thanks