Stephanie2

Dawn, while I may have had a component of pandas which started in college (shortly after 3 Hep B shots...sigh), it hit me really hard at the age of 32 shorly after my oldest exacerbated for the first time. I think it was a lovely alignment of the stars: a bad strep strain, my BBB broken down from the stress of a pandas toddler, and constant exposure to strep. Anyway, she could probably see any of the pandas docs really, but in the end after trying everything else with my boys (and lots of antibiotics, natural and standard, with me), we ended up getting fabulous results with homeopathy. Angelica Lemke is our practitioner and she is located in NYC and does skype appts (dont' have to travel at all, plus she mails the remedies to you). I highly recommend! I was very debilitated and am now thriving, as are my boys for the most part. And none of us need antibitoics anymore. We have been with her for 15 months. www.asdhomeopathy.com

strep nosode tends to be the most important one (there are several different types which I order from overseas), but each child is prescribed a constitutional remedy which is based on his/her unique symptom picture. There are sooo many for pandas, that's why I usually don't mention which ones we use, it's kind of pointless (and can be dangerous if someone self-prescribes really). BUT, my oldest and I take ignatia and my youngest takes thuja (never never give this one without the consent of a homeopath please...it tends to target vaccine injury). I wish I could help further. It's not like taking supplements where we can all share which ones, how much, etc. Homeopathic remedies are very deep acting...

Thank you kimballot! I just hope my story can serve to inspire moms to persevere, no matter which healing modality they are using. I honestly believe that God heals these kids when the time is right, regardless of modality. I also think moms have to provide lots of positive healing energy, prayers, love to these kids. That's probably the biggest aspect of all. Took me awhile to put it all together like that. PANDAS is such a challenge cuz it takes soooo much out of mom:( My own remedy has made me pretty unshakable, has allowed me to be more positive and stable with my boys. It's like we are all spiraling upward together... simply amazing! strangely, my husband is only getting about half the benefit of his remedy. but he is intolerably non-compliant about things...sigh.

tpotter, I guess you know that hpathy is an "energy" medicine like accupuncture. The thing about hpathy and accup is that you have to have a really good practitioner for it to work. I had accupuncture done once and it sent me into a tailspin. I think the doc overdid it and I had an "aggravation" of sx, but he failed to mention that to me, plus he had just been certified in accup. Anyway, I think both are very effective if done right. I know what you mean about the chronic infections. My youngest had chronic impetigo for over a year, we tried all the topicals and oral abx, natural and standard, it was a horrible nightmare! His impetigo cleared up within a week with his remedy, I kid you not!! this stuff is for real!!!! That's not to say the road is always easy. There is a lot of "detox" involved as you move up the potency scale. You have to go back through the history of illnesses as you go, but they come back more mild and with much less mental symptoms. But this is the body healing itself. Many people don't understand that and when they overdo it (like I did when my son developed pneumonia...that was a detox rxn) they ditch the whole thing cuz they get scared. I may have done that if I felt there were other options, but I knew there were none (we had tried it all!!). My hpath was convinced that I was going to quit when my son went into the ICU with pneumonia. She didn't know who she was dealing with LOL Anyway, best of luck! and I know about the husband...mine shook his head right before I have the first dose of remedy and he said, "there's no way this is gonna work". But my son woke up a different child the next day and my husband's eyes popped out of his head! He said "THAT KID JUST DID A 180!!". Coming from a man who is not easily excited about anything LOL

For those that don't know our past history, my two boys had very severe pandas and also very severe reactions to the antibiotics/steroids after awhile (plus they stopped working). And the effect from IVIG was temporary and not covered by ins. We were in a catch 22 and turned to homeopathy after about 3 years of all the other standard interventions which were just not enough (abx, steroids, ivig, spironolactone, LDN, many supplements, dietary interventions). Within the past 15 months my boys have only had to each take one course of antibiotics and that was b/c one was admitted to ICU with pneumonia/febrile seizure (it was still a homeopathic remedy in the end that pulled him out of respiratory distress when the abx were not working), and the other had a ruptured ear drum and was at home with my husband while I was in the hospital with the other one. My husband didn't know what to do and put him on abx. Other than this instance, my boys have had plenty of strep infections in the last 15 months (some confirmed by rapid and/or culture) and we have not had to use abx and we have not had to go through more than a few hours at a time at the most of wild pandas symptoms (if any). In fact, with some of the infections, my one son barely exacerbated and we were delayed in getting the strep nosode on board b/c I assumed he didnt' have strep due to lack of pandas symptoms. And actually, being able to manage strep/pandas is one of many many success stories in our house. I, too, was on chronic abx in the end for chronic, resistant sore throat. Since starting hpathy 15 months ago, I have not needed one abx or even herbal antimicrobial. And I have several other health issues that have fully cleared up (including pandas). For my youngest, who also had autism, I am planning to start CEASE therapy which involves "clearing" vaccine reactions and any meds that may have contributed to the ill health. You can also clear microbes which have been a problem in the past. The reason I am going down this path for my youngest is b/c when he does get strep/pandas, his initial onset is still pretty severe (even if I can get on top of it within 30 minutes - literally! I would still like to see him trending toward a CURE of this illness like my other son is, meaning not reacting to strep as severely or not reacting at all). Also, he seems to have some learning issues, which may or may not be ADD-related. He also has speech apraxia which makes it difficult for him to interact with his peers (although hpathy has increased his vocabulary a ton). I just want to see MORE gains and hope to get them by clearing DTaP vaccine and also the Lexapro I took while I was pregnant with him, in addition to a clostridia nosode. Here is the link to the homeopath that we use, she has a lot of pandas patients and has become very good at managing it in the past year. www.asdhomeopathy.com The initial consult is expensive but this includes follow-up emails and phone calls btwn appts. Often times when I post my updates, out of desperation people want to know more and jump into it quickly. I really advise doing your research, starting by reading Impossible Cure by Amy Lansky and talking to other hpathy moms. Please PM me with any questions, i will get notification faster in my email box. Thanks

Just trying to get a guage on results seen with CEASE. Please PM me if you are doing this approach (I will get your response much faster).

I doubt it's herxing b/c I believe you would see that WHILE on abx. My guess is that the abx delayed the onset of pandas symptoms, OR he is developing a gut bug (bacteria or yeast) which is causing the tics. Yeast would be my guess.

I'm not sure what type of homeopathy you have been using. She uses classical homeopathy, however, she and Pierre just became certified CEASE practitioners as well. They plan to combine the two approaches. She is heavy with the strep nosode which I have found to be essential in keeping pandas in check around here.

Angelica Lemke, ND. She uses homeopathy primarily. She got my severe kids off of antibiotics and in a functional state. It's been 15 months without antibiotics now! She has TONS of pandas pts. www.asdhomeopathy.com

Oh, ok good luck

Oh and I'm right there with you in terms of the "unbelievers" ugh! My mom finally became a believer when she watched me go into a sudden onset pandas episode myself. Her jaw was on the floor...haha! Luckily it was my very last one, Angelica put me on Eli's remedy. Woot!

It's a marathon having two with pandas, but with your tenacity (and OCD heehee) you will find the right path. Keep on pluggin and you can always call me. I want to get another meeting together one of these days...

I think you would get similar success with both but I think many moms really like Angelica's bedside manner and also she is not one bit afraid to be aggressive with pandas when it hits. I have to be honest, I'm not really sure what Pierre's approach is these days with it. Also Angelica is much less expensive and probably has less of a wait, although I'm not sure about that either. They are both wonderful people, truly. I'll send you a PM with info about joining some homeopathy groups so you can chat with other moms...

I tried OLE with zithromax once and the results were pretty good. Actually I rotated them every other day. I also gave OLE alone for about 6 weeks with great results for both of my boys, and even got some cognitive improvement with my younger son who still struggled with autistic features at the time. After 6 weeks, both of my boys came down with strep throat. It was shortly after that when I ditched all of that for classical homeopathy and my boys are well-controlled without any meds or herbs (14 months ago now). it has been great b/c I no longer have to give supplements all day long (I was giving OLE 3x/day and probiotics away from that 2x/day, so 5x/day my boys were taking supps, it was absolute maddness!). www.asdhomeopaty.com

Abbe, that is so fascinating about making the remedy from the saliva. I have wanted to try that at times when I am lost and am not sure what to give my kids LOL! Also, some other moms are toying with the idea of making remedies out of the kids'...wait for it...feces! Many kids suffer from intestinal infections as a result of the overuse of antibiotics killing off the good bacteria. Many of us use "bowel nosodes" to target the bacteria which show up in stool samples, but we are all wondering if it would be a much better fit to just use the actual bacteria coming out of their guts. I know this is sounding really gross to anyone reading this, but I have heard of success stories from this. By the time it is diluted down enough, there is not any bacteria left, only the "energy" which acts to treat the infections... Please let me know how things work out with Angelica. I have people contacting me out of the blue all the time and thanking me for helping them find angelica, but there are a few who give up pretty quickly and never get the benefit...for some kids it takes persistance. Also, some of the strep strains that come through are absolute BEASTS to conquer, while others are a breeze. But even the difficult strains are doable when you know what you're doing. Best of luck to you!!

I have a feeling I know the DAN from FL you are referring to...south florida? Anyway, I have to go up to very high potencies of strep nosode to clear out strep here, I doubt what he sent you even comes close. As far as Immunivir, I have no experience with it. I HAVE used spironolactone and LDN which helped but not nearly as well as what we are doing now. Our homeopath is Angelica Lemke, ND (she is a natural doctor as well as a certified classical homeopath). www.asdhomeopathy.com She works with Pierre Fontaine

kind of sounds gut-related. my sons did poorly on azith at times and it turned out to be gut infections (yeast, klebsiella, etc.).

If you don't mind me asking, who is sending you homeopathic strep? If it is not coming from a reputable homeopathy pharmacy (we use Helios in England) then it is probably not any good. Also, any time one is using homeopathy, it really needs to be managed by a reputable homeopath who specializes in pandas. I have never seen that type of reaction from a strep nosode (and there are three pandas people in my house, we use it a lot!). Regarding getting your son back from autism and then losing him to pandas, this is actually a very common occurance. This happened to my youngest son when I first started biomed. It was really horrible. Both of my sons are doing really amazing now with classical homeopathy in terms of autism and pandas. Our lives are so much easier. I hope you are able to get things settled down, it sounds really tough for you right now

Hi Abbe, I understand how you feel about the cost, but I can tell you that they are located in the heart of manhattan and they work out of their offices (not their homes) in order to maintain a professional practice even though most of their work is done via skype. I have been to their office, it is nothing extravegant, but it is manhattan nonetheless. Also, you really do get a lot for your money. Angelica will do follow-up urgent phone calls in between appts, she will do frequent emails at no cost and often times she will prescribe a remedy for the mom and manage her case as well for free, as long as it's not a very complicated case (cancer, MS, stuff like that). The reason she does this is b/c the mom does a much better job managing the kids' cases when her head is in the right place, and I can tell you from experience that this is very true and I am a completely changed individual, mentally and physically, after being managed by angelica. The other thing is if you have multiple children she will often times try to squeeze everyone into the follow-up visits so you are not constantly having appts. My point is that she really does her best to accommodate and get the best results she can. And personally I am spending a fraction of what I used to on medical care for my whole family. We rarely need to see a doctor, and when we do it is for CYA purposes, school notes, etc.

Trish, I would be happy to talk to you again, send me a PM and I'll give you my cell number Sorry it took me so long to get back to this discussion...

Bubbas mom, I will tell you the names of the remedies that we use, but if you learn about classical homeopathy you will see that you can't just use any remedy, it has to be carefully chosen by a good homeopath based on all aspects of the case. There are thousands of remedies that they choose from so 10 pandas kids could potentially need 10 different remedies based on the specific symptoms that are predominant. With that said, these are the remedies that my boys (and I) use: DS7: Ignatia is his constitutional remedy (his overall remedy for the majority of his symptoms); during an acute strep infection or exposure I usually need to add in a strep nosode called "strep pyogenes"; this last infection required a different strep remedy called "strep faecalis"; belladonna for fever/sore throat; we plan to soon add in a nosode called "klebsiella pneumonia" to clear a past kleb infection of the intestines; we also plan to add in an MMR remedy at some point, since this pandas nightmare started right after he had a reaction to the MMR vaccine (this would be in an attempt to "cure" him of his autoimmune reaction to strep). DS4: Thuja is his constitutional remedy; I add in the strep nosodes when he has strep or if his brother has strep; belladonna for fever/sore throat; I started the klebsiella nosode today b/c he has had some strange behaviors lately that were not strep related and his stool culture came up with kleb (he responded immediately to this remedy today...unbelievalbe!); I plan to possibly do a DTaP remedy since he had a reaction to it at the age of 4 months, I also plan to do a "lexapro" remedy since I strongly suspect his autistic features/low muscle tone are a result of my use of lexapro while pregnant with him (this is a remedy made from the actual drug that has the potential to clear out the damage done from the use of the drug in the past). Myself: Ignatia is my constitutional (BTW, Thuja is my husbands'...do you see the pattern? LOL). I, too, have to use the strep nosode when I get strep or my kids get it. It literally clears out my paranoia, depression, etc. within 15-20 minutes...an absolute lifesaver! Some other remedies I have heard of being used for pandas kids: stramonium, carcinosin, belladonna, pulsatilla, anacardium and many more...

I just posted our story on the other discussion regarding bcbs federal...

One of my sons received one ivig tx under bcbs federal 2 years ago. I moved too fast for them to approve or deny so I had to pay upfront. However, my husband talked to a lot of people at bcbs and we sent in a letter of appeal about 9 months later. We ended up winning the appeal one year post ivig and we received full reimbursement, which was shocking since he did not qualify for immune deficiency. However, they later sent us a letter stating that they would not reimburse/approve any further ivig after that one tx. Not sure why. We do classical homeopathy which works much better than ivig for my sons now.

Dr. Bradstreet just relocated to GA. He is a DAN doctor who understands pandas.

That's very interesting about the artery damage. I just read Fork over Knife and it really made me nervous about dairy products (the casein causing breast cancer, etc.). I am pretty comfortable with my decision to do the raw goats milk. I have to drive to timbuktu to get it, but I feel it's worth it. I am also considering the goat's milk cheeses etc but boy are they expensive!!