Still has strep, still no abx.

[Stephanie2]

By now some of you may think that my homeopathy updates are getting obnoxious. That's ok :-)

 

I love this video of my son that I took today. This video is so very telling as to where he is at with PANDAS. He displays no sound sensitivity and when he asks me for my iPhone (aka video camera) I tell him no and he just goes back to dancing! No defiance.

 

Those of you who have been around the forum for awhile know the severity of our PANDAS issues (rages, hallucinations, severe ocd, you name it). You also know that we have been around the block and then some trying to manage it all with abx, steroids, supplements, IVIG. DS3's pandas just kept getting harder to manage, and ds6 was having severe reactions to all treatment modalities. So 11 weeks ago we turned to classical homeopathy.

 

This kid has been positive for strep for 10 weeks now. I stopped all antibiotics (no ibuprofen, no steroids, no nothing), he is still positive for strep on the 48 hour culture. But he is surviving and some days even thriving with his homeopathic remedy (pandas is about 60%+ gone at the moment). Something you have to see to believe. Oh, and there is a picture of ds6, my other severe pandas son, who has been exposed to strep for 10 weeks now, no antibiotics, no strep, no pandas - only his homeopathic rememdy to stimulate/modulate his immune system. And as you can see in the picture, I make no attempt to keep them apart.

 

The Light DS6 and DS3

Edited April 28, 2011 by Stephanie2

[Ozimum]

Whoohoo! In no way are your updates obnoxious - rather it's good news and food for thought at that. Whatever works, I say! Enjoy!

Edited April 23, 2011 by Ozimum

[philamom]

y

Edited April 29, 2012 by philamom

[thereishope]

You have beautiful kids! They are so lucky to have a Mommy like you. Keep up the great work!

[matis_mom]

Amazing! Keep the updates coming They are my light at the end of the tunnel!

[MichaelTampa]

How wonderful to hear the continued success you're having with homeopathy!

 

As you know, I also went to Miranda for myself. I have had a few doses here and there. She is being very cautious with me (don't know if it's me or if that's just her way with everybody). In any event, I can tell it has some effect, but I don't think it has been very long lasting at all for me.

[kferricks]

Thanks for the update and I loved watching him dance. He is such a cutie~!

[Stephanie2]

Michael, she is very cautious about dosing the remedies. I wonder if she understands the extent of your underlying condition so as to dose more frequently? I was able to go 5-6 weeks. I think I am due for another dose right now. Amazing that my kids need it every 3-7 days (this week even more frequently b/c I am reducing probiotics), just shows the extent of damage in their little bodies...

 

Keep me posted.

 

And to everyone else, thanks for the compliments of my babies! I am especially so very proud of my 3 year old b/c at one time this kid was close to the severe end of the autistic spectrum. He amazes his mommy every day...

[JAG10]

Stephanie,

 

I followed your above posted link, read your letter addressed to PANDAS Moms and wanted to give you a chance to explain your position. It reads harshly toward a community of parents who are trying to make sound decisions on behalf of their children.

 

If you take every symptom and every diagnosis and every treatment of every individual child/parent partnership and roll them all into one....what you get is a caricature of this community that makes us sound like loons and undermines the legitimacy of the illness(es) we fight to have recognized by those outside our community.

 

As people have posted above, many friends chimed in thrilled for your kids' recent success. Honestly, KUDOS! But as PhillyPA so brilliantly put it weeks ago, we cannot all "hop on one foot" every time one of us experiences some success. May I be so bold as to say most of us have seen the neuro-typical/normal child inside our kids at one point or another and that is what compels us to continue to pursue that state for our kids consistently. We all pursue longevity of neuro-typical health and happiness for whatever remains of each of their childhoods.

 

Collectively, we aren't sure how many different problems we are dealing with here; posed hypotheses will neither be completely wrong nor completely right, that is a certainty!.

 

You are a committed warrior in this PANDAS/PITAND/PANS battle. We MUST all share our stories with humility.

 

JAG10

[Stephanie2]

Stephanie,

 

I followed your above posted link, read your letter addressed to PANDAS Moms and wanted to give you a chance to explain your position. It reads harshly toward a community of parents who are trying to make sound decisions on behalf of their children.

 

If you take every symptom and every diagnosis and every treatment of every individual child/parent partnership and roll them all into one....what you get is a caricature of this community that makes us sound like loons and undermines the legitimacy of the illness(es) we fight to have recognized by those outside our community.

 

As people have posted above, many friends chimed in thrilled for your kids' recent success. Honestly, KUDOS! But as PhillyPA so brilliantly put it weeks ago, we cannot all "hop on one foot" every time one of us experiences some success. May I be so bold as to say most of us have seen the neuro-typical/normal child inside our kids at one point or another and that is what compels us to continue to pursue that state for our kids consistently. We all pursue longevity of neuro-typical health and happiness for whatever remains of each of their childhoods.

 

Collectively, we aren't sure how many different problems we are dealing with here; posed hypotheses will neither be completely wrong nor completely right, that is a certainty!.

 

You are a committed warrior in this PANDAS/PITAND/PANS battle. We MUST all share our stories with humility.

 

JAG10

 

Yes, I would like to publicly apologize to anyone who may have been offended by that post.

 

First, the above link was not intended to go directly to yesterday's post, it was intended to go to the pictures of my boys having fun.

 

Second, sometimes my enthusiasm and passion gets the best of me these days and I am acutely aware of the need to "rein it in". I could comment on each of your comments individually with my intentions, but mainly my point is that as I watch my boys rise up (so far) out of this life, it is very hard for me to look around at the devastation that remains. I may have come across in an entirely different way than I intended. I just have a hard time watching all these kids continue to suffer.

 

Third, I struggled all day with the thought that I probably need to revise or delete that post. In the end I decided to delete it entirely.

 

Steph

[SSS]

Stephanie, I am absolutely thrilled homeopathy is working healing on your boys.

 

Over a year ago, I really, really wanted homeopathy to work healing on my daughter.

I read every book I could on it, drove my dd over 4 hours for an in person, 3 hr. consult w/a famous, excellent homeopath (Amy Lansky's homeopath, author of 'Impossible Cure') worked closely with him, switched to another excellent well known homeopath, and over 3 months and $3,000 later, we had no results, and in fact, a regression.

 

I didn't want to share that, but I do think it makes the point what is so difficult about our journeys for our children is finding out which path is truly 'theirs.'

For us right now, it has been HD-IVIG. My dd6 is in a better place than I've ever seen her (no jinx, please!)

I am very, very happy for you :-)