One Week Post-"Jumping Ship"

[Stephanie2]

I am going to have our doc monitor liver and kidney function every few months for both of my kids...

 

Is that something that needs to be done w/ OLE?

 

No, that is not something that needs to be done but my kids are on so many supplements and now adding an herb (where the dose has come from anecdotes from other moms) I feel like it is something that would help me sleep at night. OLE has been tested and has shown to be non-toxic, but my kids are so little (30 and 50 lbs.).

 

 

Stephanie, who do you see for Pandas? I see Dr R for asd stuff. thanks, Pam

 

I also see Rossignol. He did not suggest the OLE, though. However, I don't think he would be against it...

 

 

I ordered some, I will give it a try when this supply abx done. We are getting IVIG (2 left, 1 is this weekend) Has anyone heard any contraindication with ivig? I did see on wikipedia that it can cause low blood pressure and low blood sugar(real concern for young children), anyone have any experience like that?

 

Did they say it can cause low blood pressure or that it helps high blood pressure? Same with blood sugar? I'm just wondering b/c tenex is also a blood pressure lowering medication, but I am under the impression that it only lowers blood pressure IF it was high to begin with. I am assuming that it is the same with OLE. I will have to make sure that is also something that we monitor...

 

 

Stephanie, I found it without alchol at the vitamin shoppe in the vitamin shoppe brand. Is that not a good brand? I'd really like a liquid so I can sneak it in their juice. How's the verbal language today?

 

I would not mess around with a vitamin shoppe brand. Whatever you get, make sure it is 500mg per capsule (or dose) and it is standardized to 20% oleuropeins. Anything less will probably be a waste of money (and a real gamble with getting strep). Whatever you get, it is probably going to be potent and you may not be able to hide it. I mix their capsules in a couple tsp of apple juice and add some stevia to sweeten it. They complain, but I say "do you want to get strep" LOL! Then it goes down...

[Stephanie2]

I honestly can say as of today that my kids are 100% pandas free (major knock on wood here, right?)!! They are the best I have seen them in a very long time!! My 2yo is unbelievably happy and "with it" and picking up language like CRAZY!! He is also being affectionate!! Yesterday, my very speech delayed 2yo muttered to me, "love you" with a big smile on his face!!! One of those things you put in a baby book if you had the time to keep one!! LOL!

 

And my 5yo has lost the following lingering symptoms in the last few days: throat clearing tic, fears, mild separation anxiety (actually stopped coming in our bed, first time in a month or so), mild to moderate OCD. I don't think he has an ounce of OCD, cuz I'm really looking for it and I can't find it!!!!!

 

With all that said, we are battling yeast, though. It started when he (5yo) was on the abx a couple weeks ago. So yesterday I started some grapefruit seed extract and he is having some major yeast die-off (hyper, acting drunk and silly). I don't quite understand it, but "they" say that OLE will cause yeast in some kids, just like abx, so you still have to do probiotics and even some natural or RX antifungals from time to time.

 

Hoping to come back in a few days to say that EVERYTHING is gone!! OK...aren't we all...

[Fixit]

I honestly can say as of today that my kids are 100% pandas free (major knock on wood here, right?)!! They are the best I have seen them in a very long time!! My 2yo is unbelievably happy and "with it" and picking up language like CRAZY!! He is also being affectionate!! Yesterday, my very speech delayed 2yo muttered to me, "love you" with a big smile on his face!!! One of those things you put in a baby book if you had the time to keep one!! LOL!

 

And my 5yo has lost the following lingering symptoms in the last few days: throat clearing tic, fears, mild separation anxiety (actually stopped coming in our bed, first time in a month or so), mild to moderate OCD. I don't think he has an ounce of OCD, cuz I'm really looking for it and I can't find it!!!!!

 

With all that said, we are battling yeast, though. It started when he (5yo) was on the abx a couple weeks ago. So yesterday I started some grapefruit seed extract and he is having some major yeast die-off (hyper, acting drunk and silly). I don't quite understand it, but "they" say that OLE will cause yeast in some kids, just like abx, so you still have to do probiotics and even some natural or RX antifungals from time to time.

 

Hoping to come back in a few days to say that EVERYTHING is gone!! OK...aren't we all...

 

STEPH!!!!!! I am so happy for you!!!!!!

and the time frame was quick too!!!!!!

 

I would not mess around with a vitamin shoppe brand. Whatever you get, make sure it is 500mg per capsule (or dose) and it is standardized to 20% oleuropeins. Anything less will probably be a waste of money (and a real gamble with getting strep). Whatever you get, it is probably going to be potent and you may not be able to hide it. I mix their capsules in a couple tsp of apple juice and add some stevia to sweeten it. They complain, but I say "do you want to get strep" LOL! Then it goes down...

 

that is quite high...i just looked at the ole i gave ds for a long while..

it is 500mg but only 6% oleurop???

i was only giving 1x a day too....

so your dosage is quite a lot higher

have you thought about tea tree oil for yeast..lady at traders said to use when brushing teeath

and i thought that GSE was supposed to be good at treating yeast....???

[Stephanie2]

I honestly can say as of today that my kids are 100% pandas free (major knock on wood here, right?)!! They are the best I have seen them in a very long time!! My 2yo is unbelievably happy and "with it" and picking up language like CRAZY!! He is also being affectionate!! Yesterday, my very speech delayed 2yo muttered to me, "love you" with a big smile on his face!!! One of those things you put in a baby book if you had the time to keep one!! LOL!

 

And my 5yo has lost the following lingering symptoms in the last few days: throat clearing tic, fears, mild separation anxiety (actually stopped coming in our bed, first time in a month or so), mild to moderate OCD. I don't think he has an ounce of OCD, cuz I'm really looking for it and I can't find it!!!!!

 

With all that said, we are battling yeast, though. It started when he (5yo) was on the abx a couple weeks ago. So yesterday I started some grapefruit seed extract and he is having some major yeast die-off (hyper, acting drunk and silly). I don't quite understand it, but "they" say that OLE will cause yeast in some kids, just like abx, so you still have to do probiotics and even some natural or RX antifungals from time to time.

 

Hoping to come back in a few days to say that EVERYTHING is gone!! OK...aren't we all...

 

STEPH!!!!!! I am so happy for you!!!!!!

and the time frame was quick too!!!!!!

 

I would not mess around with a vitamin shoppe brand. Whatever you get, make sure it is 500mg per capsule (or dose) and it is standardized to 20% oleuropeins. Anything less will probably be a waste of money (and a real gamble with getting strep). Whatever you get, it is probably going to be potent and you may not be able to hide it. I mix their capsules in a couple tsp of apple juice and add some stevia to sweeten it. They complain, but I say "do you want to get strep" LOL! Then it goes down...

 

that is quite high...i just looked at the ole i gave ds for a long while..

it is 500mg but only 6% oleurop???

i was only giving 1x a day too....

so your dosage is quite a lot higher

have you thought about tea tree oil for yeast..lady at traders said to use when brushing teeath

and i thought that GSE was supposed to be good at treating yeast....???

 

Thanks! Like you, I am so scared of talking about it and jinxing myself. DH feels the same way! But we have been amazed this week.

 

The OLE dose I chose due to anecdotes from many autism moms with pandas kids. That's what they all found successful, so I'm going with it...

 

As far as yeast, well I don't think you can ingest Tea Tree Oil, can you?? Also, yes GSE is good for yeast - it seems to be doing something b/c they both got major herx reactions in the last couple days (meaning yeast symptoms got much worse - I kept saying to DH, tell me this means that the yeast is dying and it will be over soon!!! we're talking rashes, diarrhea, drunken silliness, hyperactivity...both kids - ugh!)...but like I always say, i will take yeast behavior over pandas behavior ANY day!!

[lynn2]

I actually used a higher dose for DS, who is 180 pounds (I used 2 of the 20% 500mg pills twice a day.) It cleared up one PANDAS exacerbation, but ultimately it couldn't handle a sinus infection that developed. It did ramp up the yeast, and GSE did take care of that, although I worry about using GSE for too long?

 

I'm so glad to hear that things are getting better.

[Stephanie2]

I actually used a higher dose for DS, who is 180 pounds (I used 2 of the 20% 500mg pills twice a day.) It cleared up one PANDAS exacerbation, but ultimately it couldn't handle a sinus infection that developed. It did ramp up the yeast, and GSE did take care of that, although I worry about using GSE for too long?

 

I'm so glad to hear that things are getting better.

 

I worry about GSE too. DS2 came back with slightly elevated liver enzymes shortly after doing some GSE with him. Could have been coincidence, could have been b/c he had been on diflucan for awhile. But I am rotating it and as soon as we get on top of the yeast I am going to minimize the dose.

 

That stinks to hear that the OLE did not clear up a sinus infection. But I have to say that for a child that big, I would think you would need a much higher dose for an active infection (like 2 pills, 3 times a day) and maybe even add in some colloidal silver or something for a couple weeks... The dose you were using is only one more pill than my 30 lb. 2yo gets just for maintenance! It's not easy with herbs b/c the dose is such a guessing game

[lynn2]

I didn't actually mean to say that the sinus infection was resistant to OLE (although I see that I did say that!) What happened was that I was unaware that he had a sinus infection, things were generally bad and I discovered that potential PANDAS diagnosis, so I never went back and upped the dose for OLE, just jumped ship the other way and went to abx.

 

I have tried cycling grapefruit seed extract with other things, but so far the other things don't work nearly as well. So I just go on and off. It's sure not perfect.

[Fixit]

Can you ladies explain the problem with GSE...???

Ds was doing relatively well..if you remember....we were sliding between 90-80% improved from doing taper....

then the moring i added 3 drops of GSE to his drink 9/7/10...he came home from school screeching and jumping???

could have been pollen count jumped from 13 to 90 ....we were outside bike riding the day before???

[mom love]

That's great Stephanie! Praying is lasts and keeps getting better!

 

I thought I'd add a link to an OLE nose spray that I thought was interesting

 

http://www.seagateproducts.com/olive-leaf-nasal-spray.html

[LaraM]

I am thinking of jumping with you Stephanie...we have two more weeks on Flagyl to control Clostridia, then I'm done. I am sooooo happy things are going well with DS5 and DS2!! :)

Edited September 28, 2010 by LaraM

[Stephanie2]

Can you ladies explain the problem with GSE...???

Ds was doing relatively well..if you remember....we were sliding between 90-80% improved from doing taper....

then the moring i added 3 drops of GSE to his drink 9/7/10...he came home from school screeching and jumping???

could have been pollen count jumped from 13 to 90 ....we were outside bike riding the day before???

 

 

That was surely die-off of some sort. Wouldn't you say it was a bacteria die-off since he does the screeching with bacteria? Doesn't the same thing happen when you start vanco?

 

Also, I think GSE is high in phenols (I think, not sure, you have to google). Phenols/salycilates can increase tics and other neurological issues. I have dealt with that by doing epsom salt baths. Some people give a digestive enzyme with phenols called No Phenol (kirkman, i think). I have not had to do that...