Stephanie2

http://thelight-stephanie.blogspot.com/2011/04/apologies.html

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

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...

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

Good luck, Wilma!!

Yes, Echinacea is one of those that will "overstimulate" the immune system. Some other immune-boosting supplements: methyl B12, Vit D (should get checked and get levels above 50 even if doc is happy with 30), very high doses of vitamin c (this should be buffered vitamin c - I use kirkman brand about 4000mg per day, there are some on here that go up to 10,000mg per day), Vit A (good for viruses), Zinc (should have this tested). When I started my oldest on his Methyl B12 shots he no longer got ear infections (and he had been getting them even with tubes in his ears), they stopped immediately.

My husband mistakenly took my phone to work today, missed your call! I don't think there are a lot on here who have done PEX...

Forgot to ask you on the phone, what did Latimer think about this (shots with PEX)?

Well as you know my boys have (had) autism, and I feel that PANDAS is my oldest child's main feature (although I think he was kind of a border kid either way). But with my 3yo, well he sounds a little like your son. In my best estimation, he had autism before his first onset of pandas (which was 15 months of age) but then who's to say for sure? He was definitely sick a lot his first year with ear infections, sinus, respiratory, you name it. I can't imagine that any doctor could look me in the eye and say that there is no way that any of those earlier infections was strep. With that being said, could he have had strep his first year and that's what made him look autistic? But really, even now when i clear strep, he still has speech apraxia, so there is no way that pandas is his only problem (also has mito dys, and the list goes on). By the way, has he ever had an MRI? I ask because that ataxia you talk about happened (happens) to my 3yo who has chiari. I have always attributed it to chiari, but then I later found a correlation btwn his pandas episodes and his chiari exacerbations. So maybe the ataxia/pandas/chiari all happens at once due to the excessive inflammation/herniation of the cerebellar (sp?) tonsills. My son also has the very low tone which I guess one could say is the mito dys but I have also been told it could be the chiari. My son has photosensitivity as well as sound sensitivity (I think the photo is chiari and sound is pandas). Maybe something to rule out but then again why put him through MRI if you don't intend to have surgery. Oh, grabbing the back of the head in pain is another chiari symptoms. I'm not sure why I am talking so much to you about chiari (as if you need the added stress!), I guess it's the ataxia that sounds a little strange.

I will read it, but does it have something to do with technology and emf's opening up the BBB and/or perpetuating microbes? I got rid of my cordless phone, but having a hard time with the iphone and wireless modem. Hard habits to break. I try to unplug at night...

I don't know where i have been kimballot (I took a few weeks off the board there for awhile), but I didn't know and I am sorry you are going through this. I will pray for your son.

Nancy, you make me want to go back to B12 shots! After 18 months I stopped them b/c we got, what I thought was, all we could out of them. They are a pain in the rear (we were doing them nightly while ds6 is asleep). No pun intended :-) Hmmm....

Yes my boys present differently. one gets adhd and tics, where the other does not. One is VIOLENT, where the other just has emotional meltdowns. One has hallucinations where the other does not. The one feature that they both get strongly is the OCD. the rest really varies. Also, one has recurrent strep issues where the other does not. One remits within 24 hours of abx, where the other takes 5-10 days. They both do not respond to steroid bursts, only to steroid tapers. One has miraculously remitted with homeopathy, one has not (yet...I'm working on it). Oh, and yes this sounds like pandas. And be forewarned, when i brought my second son's pandas issues up with the ped, she did not buy it that they could both have it. She thought my younger son was imitating my older (but from the above description, it is clear that that is impossible). I tried to explain to her that a 15 month old (that's how old my younger was at first exacerbation) cannot possibly imitate this many pandas symptoms and get them so darn accurate! Either that or I have a budding actor on my hands!

So you cleared yours with your own constitutional? Well, like I said, as long as they are both doing well, it would make sense to just pull the plug and see what happens. And then again you don't want to give up this beautiful recovery you are seeing so far... It is SO HARD TO MAKE DECISIONS! Yes, my constitutional has cleared my chronic sore throat. On an unrelated note, it is doing wonders for PMS, menstrual cramps, depression, restless legs and my neck injury from a car accident (I had tingling and numbness, occassional pain, going down my right arm)! Well, I don't think the beautiful recovery has anything to do with the antibiotics! My 6yo has not been on them in almost 3 months, and my 3yo's last two rounds of abx have done nothing as far as I can tell. The only hard part of the decision is that MAYBE omnicef has the potential to finally get him over the strep but maybe not and then I have more gut issues to contend with (although his remedy seems to be keeping him steady there). :-)

Thanks Nancy! I have used herbs in the past with success, and maybe I should add it to his daily supps right now, but I am trying not to do anything that will prevent the remedy from doing what it is supposed to do. Sometimes this stuff works against each other.

This is so very interesting. The good thing is, your kids are doing BETTER right now, so I would say you can try and see. From my own experience, after trying Augmentin (possitive rapid after a week on it), Biaxin (negative but tonsils still red and swollen), and Cefuroxime (on month, no much improvement), I got my tonsils out. I insisted on a culture and there was strep AND pseudomonas in there. Pseudomonas is resistant to nearly every antibiotic out there, so they had to give me Cipro for that. Anyway, all I am saying is maybe your son is not clearing the strep because there might be some other bug in there. Can you ask for an "upper respiratory" culture, to broaden the spectrum? That being said, I would NOT try Cipro on a 3-yo. I made the mistake of letting them prescribe it for my 7-yo, and he broke out in a rash from head to toe. Follow your mommy gut. Are you taking the strep nosode yourself? Amazingly, my own remedy has cleared my own sore throat in the last week. My homeopath told me it would take a couple weeks and it seems to finally be gone after 2.5 weeks, so no I am not taking the strep nosode, nor am I giving it to either of my kids. They are both getting ignatia, buy my strep-positive son is getting a very high dose that I had to order from a pharmacy in london.

I find 5HTP to be a tremendous help with depression/anxiety/ocd when in exacerbation. You need a quality product and about 50 mg twice a day is good. You may even be able to go a little higher depending on weight. I found that with my 50 lb 6yo that he can only tolerate 75 mg per day total or else he gets leg cramps (??). Hope that helps!

I'm sure there is some truth to that. If you think about the movie "awakening", that was a virulent strain of strep that put people to SLEEP permanently! You just never know what strep can do...scary.

Well, I had a "revelation" of sorts last night. Another pandas mom who is also pursuing homeopathy asked me if, aside from the positive culture, the pandas symptoms are better. Well, yes they are. But I actually attached a percentage to that last night and I kind of blew myself away when I realized that I think he is actually about 40% better than he was 8 weeks ago. 8 weeks ago I had to hold him down to get him dressed, change diaper, give meds/supplements, give a bath, couldn't leave the room, etc. He was turning over furniture, throwing tantrums/rages, throwing things at me, lots of hitting, lots of OCD. Now, I would say that his OCD is cut in half, the tantrums are cut in half, the chronic fussies are gone, he is more compliant about meds/bath (back to LOVING his bath which is unheard of with strep infection due to sensory stuff)etc. 8 weeks ago he was positive for strep, and today he is positive for strep and every strep test in between has been positive. What does that mean? Shouldn't his behavior be getting worse as the infection continues? Shouldn't the antibodies and resultant inflammation be so over-the-top by now that he would be totally psycho? But what I am seeing is that he is 40% better than he was. Is that b/c augmentin, even though it did not clear the strep, reduced the infection level to some degree to the point where now his body can recover on it's own with the help of his homeopathic remedy (whose potency I dramatically increased the day of the positive culture)? Is it that, like my 6yo, the actual autoimmune reaction to strep has changed/diminished? I was thinking today that if you look at my 6yo, his autoimmune response MUST be different if he can withstand this chronic exposure with no exacerbation. I mean, I have been impressed thus far that he has not actually CONTRACTED strep, but really it is more impressive that he can be around it without the exorcist reaction of the past (last time he was exposed to strep without actually getting the infection he literally had hallucinations and severe meltdowns; before homeopathy). So are things better than I thought they were? No, maybe I have not been able to clear strep, but has the response to strep changed in both of my kids? Isnt' that what we all NEED to happen anyway? Let's face it, we're not getting away from this beast anytime soon, it's everywhere. The antibiotics don't always work. No way to avoid it. Oh, and peglem up until last week his rapids have been positive, with positive culture. But last week his rapid was negative with positive culture. With all that said, I guess he could go exorcist on me at any moment. We will see.

After giving azithromycin with no luck, and now a full treatment course of Augmentin, my 3 year old pandas son is still positive for strep (8 weeks now). We have also tried a few homeopathic remedies. The homeopath feels that she may not be able to clear the strep with the antibiotics in the way (they are working against each other). I have been on the fence for several days, really trying to decide what to do next. I have no problem being patient with the homeopathic remedies, but my 6yo pandas son's health is then on the line!! BUT, he has been able to withstand this 8 week exposure without exacerbation (due to his homeopathic remedy). I feel like a bird in the hand is better than 2 in the bush, but when it comes down to it, I JUST CAN'T GIVE THIS POOR KID ONE MORE ANTIBIOTIC!! I just can't do it! I just feel like Omnicef (our next abx) is not going to do it and then he's gonna be left with clostridia, yeast and strep and a hurt belly to deal with! (not to mention, his remedy is making him much more tolerable, it's not like he is the pandas nightmare that he was 2 months ago, or even a few weeks ago). So I guess my mind is made up and I know that maybe disaster could be looming around the corner by leaving ds6 exposed. No question really, just PRAY FOR US!! LOL! Oh, and ped is sending us to ENT for tonsillectomy consult. I JUST CAN'T DO THAT EITHER! Going with "mommy gut" here, it usually steers me in the right direction, but every once in a while....yikes!

Wouldn't let me vote again. I just found out today that we had an augmentin failure in the house another positive strep test). Moving on to either exclusively homeopathy or omnicef to clear this infection.

If it were yeast, he would be touching himself in order to "stimulate" himself, and he may even be touching other people in inappropriate ways. Also with yeast you get very silly behavior, maybe some hyperactivity and sometimes this can tip into aggression. In my opinion this does not sound like yeast, but a "tic" or a compulsion. I had this going on over a year ago with my 6yo. He constantly had his hand down his pants, and it was like you said, more subconscious. We brought him to the ped and she confirmed that is was part of his tourettes/pandas. I also came across some literature about tourettes confirming that "holding the crotch" was considered a tic. Personally, I don't think you should call too much attention to it. I completely ignored it and asked my husband and his teachers to ignore it. Within a few months it went away (actually after we did IVIG to get on top of that current exacerbation).

We are using Dr. Ronald Whitmont - www.homeopathicmd.com H I got his name from the book by Connie Strasheim, Insights into Lyme Disease Treatment - 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies. Since Dr. Whitmont works from symptoms, the consultation can be done by telephone conference. There are no travel costs and the remedies are inexpensive. He really takes time to understand what is going on with each child and sends the homeopathic remedy by mail. He is also board certified in Internal Medicine. I also have lyme and I can definitely see my own positive results with most of my symptoms going away with his treatment. I have seen 95% improvement with one child. My other child is a more difficult case. She had 95 % improvement for about 4 months. Recently she had a little backsliding and Dr. Whitmont just changed her remedy and we are hoping to get back on track with her. I am happy to share my experience in more detail if anyone is interested. Hmom, I'm not sure if you got my PM, I would love to add your story to my blog, on this page: Stories from the trenches I can either use the above paragraph or you can send me a more specific paragraph including details specific to pandas and lyme. Let me know. I may also add your physician's link. How does he handle acute strep infections? Does he do anything outside of the constitutional remedy at that time? Strep nosode? Other acutes?

So happy to hear of ppl going with biomed, it is my firm belief that this is truly the way to go! I say throw in some homeopathy and you will get better results! Isabel, refresh my memory, are you the mom with 8 kids? I know we have had chats in the past :-) With that said, I don't know how you ever get a handle on a strep infection in your house! OMG i will add you to my prayers! The good news is that once you get past the initial consult, homeopathy is literally pennies a week! I think it would provide a good foundation for your family's health. Anyway, check out this link, there is a link to the homeopath that I use and you can do your research. Getting started with homeopathy - pandas

Interesting point about the DAN/biomed movement. They happen to be way ahead of the curve regarding PANDAS in my opinion. I just wish some of the "mainstream" docs would hear them out. I use two DAN docs of my own and their treatment plan for pandas is so much more broad and thorough than any of the other docs I hear about frequently on this board. I have two children whose pandas exacerbations are very severe and we have only needed one moderate-dose IVIG infusion along the way b/c of all the other treatment modalities that they use.