I'm ready to admit it...

[Stephanie2]

Just sayin'...

 

I've tried OLE, which worked great for a few months. When that failed, I tried Oil of Oregano and here we are with strep again (on a rather high dose, too. I have been told that I need to rotate, maybe I am not rotating often enough. But for now I think we are taking a break from naturals...hasn't worked any better than prophylactic azith. Azith is much easier to dose so we're going back!!

 

 

BTW, next stop...homeopathy, but not any time soon.

[Megs_Mom]

I love you. I love that you tried, I love that you are willing to talk honestly about what works and what did not. Thank you. I have followed your posts, as I would love to try something other than abx, but am WAY to scared to rock the wonderous boat around here. I admire your courage & your honesty.

[Stephanie2]

I love you. I love that you tried, I love that you are willing to talk honestly about what works and what did not. Thank you. I have followed your posts, as I would love to try something other than abx, but am WAY to scared to rock the wonderous boat around here. I admire your courage & your honesty.

 

You are too sweet! I'm not sure if it courageous as much as masochistic! But I gave it the ole college try...I know it has worked very well for others.

[AmberM]

We tried all the natural yeast stuff in a rotation. I found it so much harder to get a decent amount down because all the stuff has a horrible taste.

[PANDAS_Denmark]

I love you. I love that you tried, I love that you are willing to talk honestly about what works and what did not. Thank you. I have followed your posts, as I would love to try something other than abx, but am WAY to scared to rock the wonderous boat around here. I admire your courage & your honesty.

 

I couldn´t agree more ! You´re amazing ! Thank you !

[Stephanie2]

We tried all the natural yeast stuff in a rotation. I found it so much harder to get a decent amount down because all the stuff has a horrible taste.

 

Hi Amber, I was referring to naturals for strep, but I know what you mean, especially caprylic acid.

 

 

I love you. I love that you tried, I love that you are willing to talk honestly about what works and what did not. Thank you. I have followed your posts, as I would love to try something other than abx, but am WAY to scared to rock the wonderous boat around here. I admire your courage & your honesty.

 

I couldn´t agree more ! You´re amazing ! Thank you !

 

Ya know what is so awesome about you ladies thinking I am amazing? This is the only place where anyone thinks I am amazing!! Everyone in my life looks at me like I have 10 heads b/c our kids are so "out of control" and I am going down the wrong path, putting my kids health in danger with all the supps/meds, not going to all the right "top neurologists", yada yada. No one around me gets what we are doing and what we are going through and that we can no better control our children during pandas than we can control the sun coming up. I am so tired of being judged and looked at like a failure. I mean I could take the easy route and medicate my kids and maybe even institutionalize them and go on with my life, and the ironic thing is that then everyone would shake their heads and say, "you did all you could, you did all the right things, you tried, poor Stephanie and (husband)". But here I am banging my head against the wall to cure autism and pandas and I get nothing but grief and resistence. Wow! Big vent! Where did that come from? I know I am preaching to the choir....

 

So my point is, THANKS, I needed to hear that!

[swim]

Have to say it was good to read your vent because I am right there with you and it made me feel "normal" for a moment. Can't talk about PANDAS with friends because they look at me like I am crazy - just go to a doc and get things fixed - well, it isn't that easy. Same with family - 8 years ago we were told by grandparents that we did not discipline well enough. Glad we knew our child enough to know that he went to bed one night and woke up a different person the next day and he needed help instead of harder discipline. For every family facing the PANDAS struggle, you are all amazing ... no one understands unless they are living it themseleves ... It is nice to know there is a place where people do understand ...

 

Thank you also for your feedback on the OLE and Oil of Oregano ... we go back and forth on what supplements to try and which ones had what affect - I appreaciate you sharing your experience.

[GraceUnderPressure]

I read a young man's story of what it was like growing up with tics & such when his parents did not understand & thought all he needed was more discipline - it was so sad. That strengthened my resolve to be my son's advocate not his adversary (esp since we had been dealing with his issues in their early stages with firmer discipline because we were utterly clueless about what was happening).

 

It still hurt when family said critical things - esp. things that I learned were being said behind my back. But I kept communicating when it seemed appropriate. I didn't think they would change, but my DH & I decided we could only do what we believe to be right towards our families while first & foremost protecting our ds, & they would have to answer for how they handled it.

 

To our surprise, a number of them have been persuaded by Dr. Cunningham's research & our ds's lab results. It also helped that we explained more about our ds's problems because there was so much that they never saw or had misunderstood & I encouraged the questions though when they were inflammatory I tried to reframe them. I have no doubt whatsoever that we still have skeptics criticizing behind our backs, but at least we won some of our family members over.

 

Still, even within my support group of parents dealing with special needs kids - my friends from there are very sympathetic, but NONE of them understand what it is like to deal with this. That is why this forum has been such a lifeline! I wouldn't wish these struggles on anybody, but I am so grateful that since we on this forum are stuck with it, we can at least lean on each other for empathy as well as information & experience! Know that you are all part of our prayers every night!

[thereishope]

Everyone wants to do what's best for their kids and you never know if something will work unless you try. You're a great Mom and your kids are lucky to have you! Maybe down the road,as they get older and things stay calmer longer (and it will get calmer...believe that), you can always revisit a natural approach. Timing plays a big role in all of this. What worked, or didn't work, one time can be a very different response later on.