I SERIOUSLY think I have PANDAS!

[norcalmom]

Yes-I think something like 5 percent of adults immune systems are never able to build response to strep. And what about adult carriers, and mycop and Lyme, and other stuff that researchers now say can initiate this disfinctioal immune response?

I don't think it is any coincidence that 70(?) percent of touretts kids stop ticking when they pass thru puberty.

No one said that only kids could get or have it, it just happens that swedo only studied kids because she needs to make closest link to initial episode and the strep infection.

I do believe that many of our kids would just get better, but also that a significant amount would get worse as adults. Treatment is all about getting our kids into the group that will get better, and about getting some quality of life until they are there.

I too see pandas everywhere. I Just got my nephew-who was diagnosed with touettes 3 years ago by leading touettes expert) a camk test. 181, not in exacerbation. Huge history of strep- can't believe this kid never got tonsils out. I have to meet my SIL tomorrow to advise them.

Next on the list is a family down the street... My very dear friend, who's husband cannot work any longer he is so dysfunctional, and one son who also fits the profile. Her husband has a personal research scientist a Stanford, no one can figure out what is wrong, he had elecro shock therapy- that's how desperate they are. I'm going to sponsor a camk test for the son.

I do think it's everywhere, but I also think it is possible to have a mild case(as I think I did) that required no treatment...my sons best friend has lip and eye tic, but no other symptoms. I'm not freaked out about it, his mom knows all about pandas, but for some reason I just feel like it's a transient tic. I might have her get his titers checked just in case if doesn't resolve in couple weeks. It's hard not to see it everywhere. Dr k says that's why he doesn't deal with adults-he feels he doesn't know adults as well and might mistakenly jump to pandas conclusion because he doesn't believe there are " menta"l illnesses- just physical illnesses that involve the brain. So he's a bit biased by his experience, as are we.

[Rowens1214]

omg i just had this same thought just the other day. I too had chronic strep as a child and teen. never had tonsils taken out. Also had a lot of upper and lower respitory infections. I was a very anxious child and teenager and talk about rage. oh i have always blamed it on PMS.

 

I saw a post where a MoM who had Lyme passed it on to her children during pregnancy. Do u think its possible to pass strep into your child while pregnant. i know this sounds crazy but some days i think i am ( my husband would agree) Or do we seem to pass down a poor immune system.

 

Robin

[KaraM]

Do u think its possible to pass strep into your child while pregnant.

 

Robin

 

I don't know about when you are pregnant, but I think you can if you have strep during delivery...I think Beth Maloney may have said she had strep when she gave birth to Sammy in Saving Sammy...

[Stephanie2]

Well since posting this yesterday, i have been toying with the idea of putting our whole family on Olive Leaf Extract. My kids are just doing terribly on the abx (keep getting clostridia, which causes symptoms worse than strep for ds5). Many in the autism community SWEAR by the efficacy of using OLE 3 times a day to prevent/treat strep. Plus it would treat clostridia, without killing too many good bacteria. It is also anti-inflammatory. It sounds great on paper, right?? We are very close to "jumping ship" and trying it. After all, ds2 got strep this past week while on prophylactic azith. I know another family whose 2 boys got it on prophylactic azith as well. So what do I have to lose?

 

My point is, I am also going to have my husband and I take it to prevent us from getting strep and giving it to the kids. I will be curious if it changes my own mental state...

 

BTW, I have also always blamed my depression on PMS (and I do think that has been a problem) but out of my 4 rages in the last 4 years, at least 2 of them occured in my best time of month, not PMS. OK, like I said the kids where a mess, but they and I had strep!!

Edited September 14, 2010 by Stephanie2

[matis_mom]

I don't know...I just don't know how far to take it. Do I go on abx and risk the whole yeast/bacteria issue for myself? Maybe staying on abx would eradicate my need for lexapro, which would be nice, but then maybe my gut would be screwed up. I just don't want to feel and act so out of control everytime one of the kids gets strep...which is twice a year around here, prophylactic azith or not...

 

DS5 was really impacted by my last "episode". He acts like he wants to protect me all the time now and he gets scared of my reactions. How sad that he now has to worry about mommy's mental health when he has his own mental health issues to deal with.

Hi Stephanie,

I'm on antibiotics again because my throat is still red and my right tonsil will not go down. Even though I wasn't "sick" before starting abxs, I feel better while on them! I've had lots of emotional ups and downs, and some days I feel I'm going to loose it! I think in my case it may be Lyme related (I got tested on Friday, I hope and pray if it's there it will turn up!).

As far as gut issues, I've tried cutting out all forms of sugar, and try to be as "grain free" as possible. Also avoid potatoes/sweet potatoes. If I stay on that diet, there are no issues whatsoever, even though I always forget the probiotics for myself. If I cheat one day, my nursing baby gets a rash on her bottom right away! So if you do go on antibiotics, try to stay sugar free. BTW, ds has been on this diet for a week now and seems to be doing really well. PM me if you want more info on that.

Isabel

[matis_mom]

Well since posting this yesterday, i have been toying with the idea of putting our whole family on Olive Leaf Extract. My kids are just doing terribly on the abx (keep getting clostridia, which causes symptoms worse than strep for ds5). Many in the autism community SWEAR by the efficacy of using OLE 3 times a day to prevent/treat strep. Plus it would treat clostridia, without killing too many good bacteria. It is also anti-inflammatory. It sounds great on paper, right?? We are very close to "jumping ship" and trying it. After all, ds2 got strep this past week while on prophylactic azith. I know another family whose 2 boys got it on prophylactic azith as well. So what do I have to lose?

 

My point is, I am also going to have my husband and I take it to prevent us from getting strep and giving it to the kids. I will be curious if it changes my own mental state...

 

BTW, I have also always blamed my depression on PMS (and I do think that has been a problem) but out of my 4 rages in the last 4 years, at least 2 of them occured in my best time of month, not PMS. OK, like I said the kids where a mess, but they and I had strep!!

Hi again! I was just with a friend whose sons have Lyme. She is doing 15 days of doxycicline (sp?), 15 days of olive leaf extract. So far it seems to be working just fine, whitout any relapse when they switch to OLE. So like you said, what do you have to lose? If they've been having so many antibiotic-related trouble, I would give it a try. But I guess you have to make sure you clear the Clostridia first?

[susie]

Well since posting this yesterday, i have been toying with the idea of putting our whole family on Olive Leaf Extract. My kids are just doing terribly on the abx (keep getting clostridia, which causes symptoms worse than strep for ds5). Many in the autism community SWEAR by the efficacy of using OLE 3 times a day to prevent/treat strep. Plus it would treat clostridia, without killing too many good bacteria. It is also anti-inflammatory. It sounds great on paper, right?? We are very close to "jumping ship" and trying it. After all, ds2 got strep this past week while on prophylactic azith. I know another family whose 2 boys got it on prophylactic azith as well. So what do I have to lose?

 

My point is, I am also going to have my husband and I take it to prevent us from getting strep and giving it to the kids. I will be curious if it changes my own mental state...

 

BTW, I have also always blamed my depression on PMS (and I do think that has been a problem) but out of my 4 rages in the last 4 years, at least 2 of them occured in my best time of month, not PMS. OK, like I said the kids where a mess, but they and I had strep!!

 

Stephanie,

 

What dose of OLE are people using? I've been using it for my daughter for several weeks now. She's also on full strength Augmentin, so I don't really know if it's helping, but I figured it would at least be helpful for gut pathogens. Dr. T. mentioned it to me to stimulate the immune system, but we didn't talk about a dose. I give my daughter

1 cap (gaia brand) twice daily.

 

Susie

[Stephanie2]

Well since posting this yesterday, i have been toying with the idea of putting our whole family on Olive Leaf Extract. My kids are just doing terribly on the abx (keep getting clostridia, which causes symptoms worse than strep for ds5). Many in the autism community SWEAR by the efficacy of using OLE 3 times a day to prevent/treat strep. Plus it would treat clostridia, without killing too many good bacteria. It is also anti-inflammatory. It sounds great on paper, right?? We are very close to "jumping ship" and trying it. After all, ds2 got strep this past week while on prophylactic azith. I know another family whose 2 boys got it on prophylactic azith as well. So what do I have to lose?

 

My point is, I am also going to have my husband and I take it to prevent us from getting strep and giving it to the kids. I will be curious if it changes my own mental state...

 

BTW, I have also always blamed my depression on PMS (and I do think that has been a problem) but out of my 4 rages in the last 4 years, at least 2 of them occured in my best time of month, not PMS. OK, like I said the kids where a mess, but they and I had strep!!

 

Stephanie,

 

What dose of OLE are people using? I've been using it for my daughter for several weeks now. She's also on full strength Augmentin, so I don't really know if it's helping, but I figured it would at least be helpful for gut pathogens. Dr. T. mentioned it to me to stimulate the immune system, but we didn't talk about a dose. I give my daughter

1 cap (gaia brand) twice daily.

 

Susie

 

I also use gaia brand. There is a woman on the yahoo autism boards (Crystal) who uses 500mg 3 times a day of that brand. so that would be 3 capsules a day. There is another woman who gave her child up to 3000 mg a day. I have no idea what is safe. My youngest is only 30 lbs so I don't want to go crazy.

 

There is something to be said for using herbs during abx to keep the gut bugs away. I was doing that for a while but I kept hearing that OLE interferes with the abx's efficacy. So I decided to stop the rotation of herbs that I was doing and now we are a mess. So, if I have to choose one over the other, I am thinking it may be best to go with OLE...? Maybe I should have stuck with both??