Interesting find in my husbands baby book

[CSP]

As with our family 3 gen. of TS. I'll throw this in the mix. My husband's grandmother on his father's side in the 70's was bitten by a mesquito (sp) and I forget the name of what you can get from that. Anyway, my husband remembers her banging her head on the floor and screeming until she died from the bite. Is there a link between her too and some abnormal brain function?

 

C.P.

[faith]

Kelly, I did that EXACT same thing as you described with the breath thing and I remember going to the doctor too. I was about 10 or 11. I also remember bending my leg back at the knee every so often when I was walking...no one wanted to be behind me when going up the stairs!

 

What I think about all this is this,

yes, I have often had the gut feeling that PANDAS is not necessarily this totally separate thing. I wonder if not for the vaccines and strep antibodies, etc., symptoms would be mild or totally under the radar? But, I think there has to be some genetics involved, for then this would affect the vast majority of people the same way. So wether tics, tourettes, or pandas, or whatever, I suppose it is just the way one's immune system handles the insults.

I mean, the only way PANDAS has been brought to the forefront is because the symptoms are usually quite pronounced, and also involve more than just tics, it is also ocd behaviors (you are correct cheri, some autistics can have pandas and just present with exacerbated ocd, it is not only a tic thing), along with many other emotional behaviors that some here can certainly attest to. And that is what brings those parents to the docs searching for answers. Those of us with milder symptoms are told "it's just tics" and are sent on our way. I find it very interesting C.P. what you described about your husband in the first post....he probably was affected in some way by that vaccine. So think about our generation of kids and all the more vaccines THEY get, along with all the other insults of this modern world that Kelly mentions. .... I mean, it used to be thought that tourettes was rare, but it sure doesn't seem that way to me, just judging from this little group. We are sharing all this info because of the technology we have now with the internet, but back in the day, where else would you find all this info?

 

So maybe the pandas are really the more severe or pronounced cases because they are brought out by the strep antibodies -- but they are maybe fortunate in the sense that they are recognized because they're symptoms are pronounced enough with a pattern that has been documented enough to put a name on it because of it being recognized as similar to sydnems chorea (that is how the research got started), and hence, the antibiotic being a treatment? Sort of "the squeaky wheel gets the oil" kind of thing. (That is why I have asked this question many times of new posters who are asking about pandas and tell about a "sudden onset" -- I ask if they have ever noticed any tics before or anything that could have been a tic in the past, and many, many times, the answer is usually a yes.) Others whose symptoms do not necessarily follow the same patterns and don't have strep or high strep titers, may have just as severe tics and such (and also wax and wane) but it is not mainstream to believe that the insults like vaccines could be responsible for any of it... And so, here WE are......

 

Faith

 

 

 

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[Chemar]

welp

 

I just saw this on the health news headlines forum at NeuroTalk so scooted over here to link it for everyone.........

deals with depression, but the overall topic is relevant to this discussion too!

 

 

http://psychcentral.com/news/2008/03/13/th...rders/2038.html

[ruby23]

I read an interesting article and I probably have it saved somewhere that discusses that the damage being done can actually alter the genetic makeup/DNA of an individual causing it Tics/Tourettes to appear to be a genetic disposition. Only a theorey but an interesting one. I think I'm extremely focused on what is the root of the problem, what is causing the disorder. How do we attribute such an explosion in cases as opposed to 20 years ago. The theorey of genetics does not explain the explosion of cases. If it did we should have had parallel numbers before the vaccinations were increased. I totally respect your position. I however feel that a majority of the current cases are caused by the basal ganglia being damaged by an external factor that was introduced in the past 20 years. Now perhaps if you have an individual who is born and for whatever reason, the basal ganglia is not wired as it should be perhaps they are passing that genetic code onto their offspring. Totally feasible.

 

 

 

Hi Ruby

 

I am not sure I fully understand what you are disagreeing with? In my family we are now pretty sure of 3rd generation Tourette Syndrome.....possibly more as I gather anecdotal information deeeper in ancestry....but my youngest son, husband and his father in turn all exhibit Tourette Syndrome Spectrum Disorder

 

My oldest son had the same vaccines and was exposed to the same environment as my younger, yet oldest son does NOT have TS etc (oldest is 21yo and youngest is 18yo and hubby is mid sixties, grandpa was in his 80s when he died)

 

it seems pretty clear to me that we are looking at genetically inherited TS in our family, albeit that the manifestation of the syndrome has no doubt been affected by many things

 

just the difference between my two sons, both exposed to the same stuff all these years, is pretty clear evidence to me on the genetic predisposition issue.

 

that is not discounting the effect of the heavy metals etc etc etc.......but nothing other than genetics explains our family history of Tourette Syndrome Spectrum Disorder

 

that does not mean I feel ALL tics are genetic. But in our case, genetics is core...of that I have absolutely no doubt

[kim]

CP,

 

As with our family 3 gen. of TS. I'll throw this in the mix. My husband's grandmother on his father's side in the 70's was bitten by a mesquito (sp) and I forget the name of what you can get from that. Anyway, my husband remembers her banging her head on the floor and screeming until she died from the bite. Is there a link between her too and some abnormal brain function?

 

 

I think it's a great probability that she was exhibiting the defect in the way this side of the family's immune system handles virus. Increased brain permeability, for what ever reason?

 

Was the virus West Nile?

 

CP, i remember that your son turned yellow after the varicella vax. This would suggest his liver was not functioning properly, i believe. Did a Dr. ever see him during that time?

[CSP]

Kim,

 

Back then they called it encephalitis (I looked that one up in the dictionary ) So I'm not sure if that would be now what you would call West Nile? She did live in FL.

 

Funny thing about my son looking yellow, you could not notice it looking at him. It was only in a photo that I noticed it, and how his color was so different then his sisters, who were in the same photo. He did go to the Dr. but not for that at the time, because I was freaking out about the tics. I was so overwhelmed with it all I never thought about it again until I mentioned it here.

 

I did tell the intragrative Dr. and she did not seem to think he was yellow anymore, but that was a year after the vaccines.

 

C.P.

[P_Mom]

Ruby,

I agree about the vaccines....there are so many more "required" these days as opposed to years ago and I do believe that these vaccines are a big part of the surge in these neurological disorders. However, I believe these kids who have these reactions are born with a genetic predisposition to develope these disorders, and then they are brought out by the many assualts from vaccines...years ago these kids with the genetic predisposition may have been able to have their symptoms remain so mild they weren't noticed or kept at bay because the vaccine requirements were so much less.

 

Kelly

[kim]

Kelly/Ruby,

 

I couldn't agree more. I'm especially am down on the vax program right now, because I think it is totally out of control due to $$$$. However, what do you guys make of CP's families history? Her husbands grandmother was not overloaded with mercury or alum (or was she) anyway, what is the implication of natural virus on people who catch the things that some may be deciding not to vax for.

 

If there is a big incidence of people deciding to stop vaccinating for MMR, varicella, etc. what will happen, especially as people get an illness that was normally caught in childhood?

 

We are so busy fending off disease (and some are relatively benign) that we have created some monsters.

 

My Ped told me that amox was like water on fire. Now, i read it's about 70% effective? Then, i read that's it's invading the cells in our body that are meant to protect us? These bacteria/virus have a real desire to survive, as do we!

 

Just wonder your thoughts

[CSP]

Kim, and everyone,

 

His grandmother died in the 70's in her 60's so what could she have had as far as vaccines go? (Polio maybe?) And his father is in his 70's now, all he does is blink, and clear his throat. Could that be from the food he eats now in these times. ie: diet soda.

 

So... in what year was the first autsim DX? My girlfriend down the street, both her boys have aspergers. They would get the flu shot every year, (14yo and 11yo) until this year I begged her not to. Her husband has aspergers too. (43yo)

 

Before I start to cry again I'm going to start another post.

C.P.

[Chemar]

I think the real important thing to always recognise here is that we are very much a diverse group...

 

some of us are families where the gentic ancestry is so clearly visible to us in our children, spouses, ourselves in many cases, and our relatives, yet we know too that other factors, from candida and strep and other microbes all the way to allergies and intolerances and deficiencies and sensitivities, and the vaccines in their concentrations and variations over the years ...all these things play a *major* role in onset or aggravation of neurological conditions like tics and Tourettes

 

so to me there really isnt anything to "disagree" with. ...

 

we are a very diverse group brought together by a number of common denominators, primarily tics.

 

For some of us there is a genetic predisosition already passed along, initiated by who knows what way back when.

 

For others , they are seeing immediate results of something causing harm, whether the vaccines or the strep or candida or gluten or whatever. For some of those, hey, there might be gene stuff involved as well, and for others, maybe initially "perfectly healthy" and then harmed by something.

 

By discussing the genetic factors I sure am not trying to discount the many other reasons for the high numbers of kids who seem to be having neurological problems.

 

More just drawing from what we are learning in our own familial histories, and how that may have impacted our relatives.

 

anyway...just wanted to be sure I wasnt being misunderstood for my chatting about our strong genetic "evidence" for my family's Tourette Syndrome Spectrum of disorders.

 

I certainly am by no means trying to suggest that it is "all in the genes"....and those who know our story, know that so many of the things that we discuss here, including vaccines, are things that I firmly believe played a huge part in my sons dramatic onset of his spectrum of disorders, even tho we have known since birth that he had developmental and neurological things going on, something not seen in his older brother.

 

 

I fully agree and always have, that there is an alarming rise in kids who are exhibiting neurological problems and I do believe that food and nutritional deficiences, and vaccines and bacteria and viruses and fungi etc, and environmental toxins, and a whole heap more things are at the root of this explosion in tics, autism and other childhood disorders. I also think they are responsible for many adult illnesses.............but that is a whole new topic( and one of my pet peeves re docs who discount Candida )

 

ok

off my soapbox

[kim]

CP

 

Something occured to me. I had to leave yesterday right after I read your last post here. All of a sudden it hit me like a ton of bricks that I might have scared you, by mentioning your son looking yellow. CP, everything i have read says that people with TS and even Autism have a normal life expectancy. I didn't mean to imply that there was anything wrong with your son!

 

Since I have decided not to give the boys that 2nd dose of varicella vax, I've been keeping an eye out for things that can be done naturally to help them get thru it ok, if they do get it. I read that you should not give fatty foods of any kind, and I believe, lite on protein, so the liver isn't working on digestion and can work to clear the virus. I was just curious if a Dr. had mentioned anything during that time. CP, as parents i think we are all doing our best to keep our kids healthy and gather info to help us make future decisions regarding their health. The rest we will have to leave up to the one that our children truly belong to. I think he is the only one with all of the answers here. Research is fine, but my boys lives are ultimately in his hands. We can't lose site of that faith.

Big hug CP, i'm so sorry if I upset you!

[CSP]

((((KIM))))))))

 

OH... NO... you were not the reason I was feeling bad.

 

I was just sad because TS and PANDAS being so close in symptoms that I don't know about anyone else, but I wonder if my son needs antibiotics, and because his titers are so low a Dr would not give it to him. I started the other post so I could show how the men in my life were/are very successful. So even if they were not dx with the correct dx they still turned out doing very well in life.

 

Just a little tiny bit of what my husband has to remind me of, OH... only... every other day

 

BTW... Kim, would love to here about your sons, have a little bragging you would like to get off your chest.

 

C.P.

[Chemar]

 

 

 

btw CP, I am not sure if you read on Judy's thread where we were talking re natural antibiotics, but I do know for sure that my son does better overall with various "natural" antibiotics, I guess "prophylactically" as we do on/off periods with various ones.... and when he keeps his immune system well *modulated* rather than just boosted, he seems to do best. (for my son, because he has an autoimmune disorder, Crohn's Disease,...as PANDAS also is....... we do *not* want to boost his immunity beyond what his autoimmune illness can handle, while at the same time needing to have a healthy immune system) He was on a series of 3 antibodies, including zithromax, for the first 3 mths after his Crohn's dx and honestly, apart from that first Z pac, all the others made him feel yuck digestively and in his opinion it made his tics wax. He was in severe pain too and fatiqued from the Crohn's at that time and so that obviously played a part. But since cycling him through monolaurin, olive leaf extract and the Candida Clear (which has as one of its ingredients, oregano oil, reputed to be a powerful herbal microbiocidal and anti-parasitic) he is really doing well

These, along with the essential nutritional modifications to his diet, and using more garlic, turmeric, ginger etc in cooking seem to be a very big plus in his overall wellbeing, which in turn always seems to keep his tics at minimal level. Now whether these "natural antibiotics" are actually *directly* helping something neurologically for him too.....very probable, just as they are likely also helping his immune system somehow. He really is overall healthy, doesnt get colds/flu etc, which is always a risk with some of the standard immuno suppresive drugs used for autoimmune illnesses.

he is 18yo now and very much in charge of his own supplement plan, which he has worked out from what I first put together for him for the TS/OCD/ADD and mood stuff, and now has his own plan to balance the fact that he also has Crohn's

 

anyway, I am rambling again..........

this really is such an interesting thread! thanks for starting it CP

[kim]

I'm so relieved to read that CP.

 

I will add to the brag thread as soon as I have a chance. I'm staying signed on, but am away from the ole laptop most of the time. Little one has that stomach flu that Tx was talking about, I'm afraid. Was up most of the nite (nothing new there!) but was pretty worried as he kept complaining about his stomach feeling so acidy and burning. I thought he was having a major acid reflux thing going on, but as time goes on it looks more like a flu. Aching, fever, and both ends are very active. Aghhh.