[2-year homeopathy update and announcement]

For those who don't know me, I have been a member of this group since 2009 when my boys were first diagnosed. I have not been as active in recent years b/c we have finally gained control over this beast of an illness. But I like to come back from time to time to give an update, and our 2-year mark seems like a good time to do so.
First, I'd like to make a quick announcement...I am now studying to become a homeopath and plan to specialize in autism and pandas/pans. I am already working for a new asd/pandas holistic group as a Holistic Healthcare Consultant (guiding moms to the proper avenues within alternative medicine, which includes discussing dietary/supplement interventions and many other avenues).

So our quick history is that both of my boys had severe pandas (psychotic rages and all the typical pandas symptoms, even additional strep-related symptoms such as chiari malformation and opsoclonus-myoclonus). We tried for a couple years to treat with abx/steroids/ivig and many many supplements and experimental meds (spironolactone, LDN). My boys kept getting worse as the abx were causing severe gastrointestinal infections, despite the use of very high dose probiotics. Also, the abx eventually stopped treating strep altogether. During the last month of mainstream treatment I had to put my oldest son on Risperdal, which was my darkest hour really.

In Feb 2011 I switched over to homeopathy, our first homeopath was A Lemke and we have added on J Slater lately, I now work for both of these homeopaths. Right away when I started my older son's remedy his rages ceased and his pandas became very manageable. My younger son took a couple months to get on top of, he had a severe and chronic and treatment-resistant strep infection (and staph) when we started, plus Angelica was new to this illness. To make a very long story short, two years later my boys keep doing better and better and all symptoms are either completely gone or are entirely manageable with homeopathy and a handful of supplements. My youngest son is the real miracle story, as he had chiari malformation, seizure tendencies, speech apraxia, social anxiety/asd, severe eczema, asthma and many chronic infections. The only symptoms left with him are mild asthma (no meds required except the occasional albuterol in nebulizer) and mild speech apraxia, and both conditions continue to improve each month. My older son also had asthma and chronic gut infections which are fully under control at this time (asthma is totally gone, mine is too). To give you an idea of where they are now, they both laugh and smile each day, they are both at the top of their classes (oldest has the highest grades in his class, straight A's), they have hobbies and friends and have no anxiety whatsoever. To be honest I look around some days and can't believe this is my life, after years and years of dysfunction.

Usually when I blanket the message boards with these updates I get a lot of emails that take me some time to get to. For what it's worth, I will answer some of the "frequently asked questions" here but you are also welcome to email me.

*I suggest reading the book Impossible Cure, by Amy Lansky, if you'd like to learn more about homeopathic remedies and how they work. This book also helps to prepare moms how to dose the remedies once they are prescribed.
*If you are going to get a local homeopath, I'd suggest asking him/her some questions about how he would treat pandas first. My experience with a local homeopath was not a good one and it wasted a bit of time (I used her for myself and my husband, turns out I have pandas too and she was not able to manage it, in fact she was just scratching her head and didn't know what to do when I went into a pandas episode and the remedy she prescribed was no longer working). For most cases I have been following, the strep nosode is an absolute necessity, in addition to a constitutional remedy. And the remedies need to be dosed very frequently and aggressively, especially at first. Many homeopaths who are not aware of pandas/asd will not be willing to treat so aggressively or will really not know how to do it. In addition to the homeopaths I work for, there are moms reporting success with a handful of other homeopaths, most will do skype appts and travel is not necessary.
*Homeopathy is very successful for Lyme patients. I never had my boys tested but I highly suspect lyme for all three of us. There are actually a handful of lyme nosodes that some parents have used, but very likely will not even be necessary to get on top of it.
*I often get asked which remedies we were prescribed. There are about 5000 homeopathic remedies available and it takes 2-3 hours during the initial consult to narrow down which ones will be best for each particular child. My homeopath says that about 50% of cases respond to ignatia or carcinosin, and the other 50% respond to one of about 10 other common remedies, while some respond to very unusual remedies. Almost all of them have also had to take various different strep nosodes, or strep pneumonia nosodes, or candida albicans nosodes, or others. As for myself and my boys, we were initially prescribed ignatia (myself and my older son) and thuja (younger son). Over time the constitutional remedies will change as the case improves, we have moved on to other remedies such as: sulphur, carcinosin, oxygenium, meddhorinum, arsenicum. All three of us have used and "cleared" very high potency and various strep nosodes. We are all back to just taking one or two remedies each right now.
*homeopathic remedies are not supplements or herbs, they are diluted down substances with are highly potentized with the energy of the original substance. This is considered "energy medicine", the same way acupuncture and reiki are considered energy medicine. Homeopathic remedies are very powerful and should only be used (for chronic cases) under the guidance of an experienced homeopath.
*in the successful cases that I have followed, the child went off all meds. if you read Impossible Cure and learn how homeopathy works, you will see why remedies do not work very well in the presence of regular medications, including steroids and antibiotics. This is the hardest hurdle for moms to get over when trying to decide whether or not to go with homeopathy. It requires a leap of faith, so to speak, at some point. I always think of the saying: you can never cross the ocean unless you have the courage to lose sight of the shore. I remember the feeling when I took my kids off abx and sent them to school. It was scary to say the least.

If you want more info you can PM me.
Stephanie

[Nystatin and abx]

Nystatin will not help c diff, in fact I would argue that it could "almost" be a contributing factor toward the development of c diff. The gut microbes have a limited amount of space in which to "live". When you kill one microbe off (nystatin kills yeast), you make room for another to move in it's place (such as c diff, klebsiella or even strains of gut-related strep). We were on the same merry-go-round of abx mentioned above (and antifungals, etc.), high dose probiotics, etc. In the end it all got out of control and we stopped all abx and now only give homeopathic remedies for all infections, which has been very successful.

 

My advice about nystatin is to use lots and lots of probiotics when you choose to go after gut microbes. At one point my boys were taking 1.25 trillion cfu's of probiotics, although I don't think most kids would require such a high amount.

 

By the way, if you go with sacc b as your probiotic, you should give it away from nystatin b/c nystatin could potentially kill sacc b (which is a "good" yeast).

[Strep pneumonia IgG antibody results]

I'm not sure if what I am about to tell you is at all related to what you are asking, but your daughter sounds like my youngest pandas son (I have two pandas boys). My youngest (4.5 years old) has had strep (group A) and pneumonia too many times to count in the past year. I had him muscle tested a month ago and (even tho it didn't come up in the labs when he was in the ped ICU) he tested positive for strep pneumonia. We do strictly homeopathic remedies for all illnesses (with the exception of the first round of pnuemonia b/c I panicked and took him to ER before calling homeopath, and of course they admitted him and drugged him up pretty damn good and he ended up with steroid induced psychosis and a severe bowel infection from all the antibitoics, but that's another story). The part I am tryin to get at is that we started a "strep pneumonia nosode" (also referred to as pneumococcinum), which is a homeopathic remedy made from strep pneumonia. He will be taking it for quite awhile. Within 3 days I found that it took care of some low level pandas symptoms that he had been having recently. It is definitely doing somehting and I also feel that it might be strengthening his immune system. He has been in school for over a month with no antibiotics and no infections, no days off school. A lifetime record for him

 

For the record, we treat strep infections with a nosode called strep pyogenes nosode. Very effective and fast.

[Scarlet Fever C Diff]

also there is a c diff nosode that I have used with success for one of my boys. he only required 2 doses and it worked immediately...

[Scarlet Fever C Diff]

did this happen after the tuberculinum was administered? talk to homeopath. it is common for kids to get rashes after remedies as a form of detox or "die-off", although it could be strep and she could need a strep nosode asap...

[C Diff getting Better]

I dont' know which homeopath she used but my boys have had fabulous succes with homeopathy for over 18 months now and we usse a homeopath located in NYC who specializes in pandas and autism. Her name is Angelica Lemke and she does skype appts for almost all her patients and the child doesnt' even need to be present. It's expensive but sooo worth it. www.asdhomeopathy.com

 

I so identify with what you just went through. We are going through a really tough time too. So glad you found some help with homeopathic doc. Wondering if you would be willing to let me know (pm me?) where that doc is? Name and town. Thx. Also, how old is your DD? Mine is 12.

[Is it true that nothing short of IVIg ever helps adults?]

My sons and I have pandas. I tried SSRIs at first with great success and then I bottomed out and became suicidal and had to discontinue them. Abx helped but I had to be on treatment dose constantly and it was tearing up my stomach. Then I got all of us to a homeopath in NYC (via skype) who specializes in autim/pandas and she got us straightened out very quickly. This was 18 months ago and our pandas is still very much under control without abx or psych meds. I know many of ther kids/moms who are being treated by her with great success, so I would say Dr. K is absolutely wrong about the necessity for IVIG.

 

our homeopath (angelica lemke...she see patients internationally over skype, you do not need to leave your home)

www.asdhomeopathy.com

 

 

I've gone on firing letters and e-mails at everyone I can think of, in hopes of finding a doctor with some knowledge of PANDAS within reach of where I live. I've just had a reply from one of them (Dr. Kovacevic, some of you have mentioned him) which says that "at the age of 22 the ONLY treatment that has a decent chance of success is the IVIG treatment. Anything else, SSRIs, antibiotics, psychological counseling etc. essentially has NOT shown any success and may give you a temporary relief (if any) at best."

 

Is this true, or have any of you (or your grown-up children) had any success with just antibiotics?

If not a lasting result, does it at least work temporarily? Because in my current state I'm not entirely sure I could cope with IVIg (or rather, that any doctor could cope with giving it me!)

And anyway, is IVIg even available in the UK? I don't expect so on the NHS, but can it be got privately if I could find a doctor to order it?

 

Thanks very much.

[Positive for C Diff]

My boys have a history of c. diff (from too many abx). We used to use vancomycin (must be oral, not IV) or flagyl, but be careful: if you are going to go chasing gut bugs, have lots of probiotics on board (twice a day) and you may even see the need for diflucan or an herbal yeast fighter if you see yeast start to flare from the abx. And just FYI, we switched over to homeopathy 18 months ago and we had clostridia flare once since then and it was taken care of by a remedy called Clostridia Difficile nosode. My son only needed two doses. But this approach should be overseen by a homeopath.

[Low Copper level?]

Does your child receive a zinc supplement? That would reduce copper. If so, maybe you need to reduce the dosage. If you are supplementing copper, watch out, it you go too high you might to see more mental symptoms...

[Can you be too old for it to help?]

I don't think anyone is too old to get help. I am 38 and myself and my boys are being successfully treated.

[18 month Classical Homeopathy update]

So I glanced at the date on the computer this morning and noticed that it has been 18 months today since we switched from standard pandas tx to classical homeopathy. My boys continue to do well with their constitutional remedies and strep nosodes when strep comes around. In fact, we have strep in the house right now and all 4 of us are taking a sip of the strep nosode a few times a day. PANDAS sx (theirs and mine) and sore throats are very much under control.

 

For those who don't know our story (and because I know I will be asked), my boys are 4 and 7 and they have had pandas since they were 15 and 20 months. They had all the severe textbook symptoms and my youngest had a few more sx that would flare with strep (opsoclonus/myoclonus movements, chiari malformation, loss of appetite, chronic impetigo). My youngest (although never officially tested/diagnosed) probably fell somewhere in the moderate classic autism range. We tried IVIG, steroids, multiple abx, spironolactone, LDN and tons and tons of supplements. While we had the best possible pandas doctors around, they continued to be challenging cases and in some ways, they continued to get worse. Also, the antibiotics just stopped working over time. I also have some of the textbook pandas sx when I get strep (mostly emotional lability, some ocd).

 

My boys now only take fiber, probiotics and vit c. Every other day I "juice" for them and on the other days they take "Juice Plus". One of my sons takes Quinton Isotonic Minerals. They have each only needed one round of abx in the last 18 months, and that was only b/c I did not realize that they had strep (thought it was the flu b/c they had no pandas sx for that particular strep infection) until the illness got out of control, landing them both in the ER with super high fevers and a ruptured ear drum where abx were started immediately. Now I start the strep nosode for each illness.

 

I'm not gonna sugar coat this. Our lives are much easier than they were, but we are not cured yet and my boys still have physical illnesses which take up much of my time. While 99% of the mental issues are under control (in fact, I could go on and on all day about the gains they have made, they would make your head spin), it is common for homeopathy to push the issues off the "mental plane" and onto the "physical plane". So when my boys get sick they get asthma/bronchitis or severe ear infections/perforations or profuse vomitting (sometimes dehydration) sometimes with high fevers which keep me up all night trying to control. Part of this is a "detox" reaction which occurs whenever I make a change (change their remedy, increase the potency of their remedy, or start "juicing" again after a long break) and part of it is me waiting too long to start the strep nosode. And "in theory", over time these physical illnesses should die down as their bodies continue to heal. Also, we are considering "clearing" some issues with vaccine nosodes, but I am not in a hurry at this point. This is called "CEASE therapy", which you could google if you wish. My oldest son may need to clear the MMR vaccine and my youngest may need to clear the DTaP vaccine. Our homeopath feels that some of the immune issues may have started with these vaccines.

 

Also, my youngest had autism and still has some speech apraxia (wouldn't look at or speak to anyone when we would go out in public, and often wouldn't look at anyone he knew outside the home). He now initiates communication and looks and waves at people when we are out. He recently gave my brother a hug for the first time (one week after starting his new remedy which has been the best one for him yet...carcinosin). In the past he wouldn't even LOOK at my brother, now he runs up to him and throws his arms around him! Simply amazing:). My husband and I had multiple health issues which are all gone or are very much managed.

 

A few other questions I always get asked when I update on my boys :

 

My boys were not tested for lyme disease but I have multiple reasons to believe that we all had/have it.

Our remedies...Eli takes Ignatia, I take Ignatia, Bradley takes Carcinosin (formerly Thuja) and my husband takes Thuja. We all take a strep nosode when illness enters the picture, usually strep pyogenes. There are many many remedies which are good for pandas and i don't recommend self-prescribing.

Here is the website of the homeopath that we use (she can consult via skype, you don't have to travel to NYC):

www.asdhomeopathy.com

 

I hope this helps or gives hope

[Developmentally Delayed]

I have two sons with pandas, the youngest has developmental delay and speech apraxia. I have seen a definite correlation with pandas/strep, all gains go out the window and he turns "inward" (if I were to get an eval on a pandas day, he would be classic autism). My son's pandas is now under control and many of the delays are improving, with speech apraxia being the slowest to come along. We do classical homeopathy.

DD (almost 4) was recently diagnosed with Pragmatic Speech & Processing Delay. She's also immature emotionally. She's in ST/OT and seeing a counselor who also thinks she has PTSD from her past medical history. We didn't put 2 & 2 together until she got a UTI and was put on antibiotics- she seemed to "wake up" and her issues went from 90% to 50% so there's a reason why antibiotics help!

 

Would PANDAS/PANS cause developmental delays? Before the abx we were starting to think she might have high functioning autism, but it's not consistent. Some days she's sharp as a knife and other days she's foggy brained. It's confusing!

 

We're on the waiting list for a Developmental Ped.

[Homeopathic tx for yeast?]

While not actually "homeopathic", an herb called Grapefruit Seed Extract would be great but follow it up (an hour or so later) with good probiotics. Oil of Oregano would knock it out but can be hard on the gut. Personally, we use classical homeopathic remedies but you would need a homeopath really to do this. I just got rid of a vaginal yeast infection very easily with my remedy.

[How do you find a DAN?]

Scott Smith in northern NJ is very good. Also we have had fantatic succes with Pierre Fontaine/Angelica Lemke in NYC, they specialize in homeopathy for ASD/pandas.

[Pleo San Strep]

that's a good point. we have had some funky stuff come up on throat cultures before. staph, enterobacteria...

[Pleo San Strep]

Well I see a professional homeopath who specializes in ASD and PANDAS. She has each of my sons (and myself) on a constitutional remedy (a remedy selected based on our own unique expression of the illness). My oldest's constitutional remedy is ignatia (which you could google for more info), which also was mine up until recently. My youngest son and myself are now taking carcinosin (a popular asd/pandas remedy, but there are so many so please don't self-prescribe). Anyway, we take this constitutional remedy whenever symptoms flare (could be every day or could be once every week, just depends on circumstances at hand...stress level, microbial exposure, etc.). If the constitutional remedy is not enough (say, in the case of an acute strep infection), we will then add in the strep pyogenes nosode. We may need it once a day for a few days or we may even need it once every few hours (there have been times when I have had to give it every 10 minutes for an hour...just depends on severity of situation/sx). And there has even been an acute strep infection (with positive culture) where the strep pyogenes nosode was not working and we had to go with a remedy called strep facialis (which targets alpha and gamma hemolytic strep, commonly found in stool cultures). I found this instance to be strange, being that my son tested positive on the rapid and 48 culture for strep PYOGENES. Makes me think that maybe the microbe cross-reacted on the culture and maybe there are other kids who also have other strains of strep found in the throat, but are coming up as pyogenes.

 

Hope that wasn't too confusing, but just goes to show you a professional homeopath can really get you out of a bind...

[Pleo San Strep]

I've never used plea sans strep but I do use a strep pyogenes nosode which is similar. and I don't leave home without it!!

[FIXIT CLEAR YOUR INBOX!]

I have some amazing news about Bradley...

 

clear it soon or I'll stalk your phone...

[pandas son has pos culture for group a strep]

Thanks, ladies! Hey, I figure that for every 99 people who think I'm the kooky homeopathy lady, there is always 1 who responds to my posts and whose life is changed b/c of it. So I keep "putting myself out there" LOL

[For those of us with MTHFR children]

You could just give him some supplements which support methylation and see how he responds. When my son tested positive (hetero) I tried one of his supplements (which contained TMG and several others) and WOW! It was like all the gears in my brain started moving better than they ever had. I had some auditory processing difficulties which vanished immediately! We also never had my other son tested b/c he responded well to the supplements...

[pandas son has pos culture for group a strep]

BTW, people have asked me before if I think that my boys' have become strep carriers since starting homeopathy. I suppose it's a possibility, although I dont' care so much at this point b/c pandas sx always resolve (and faster and faster as we go). However, I WOULD like to see my boys STOP getting strep 4 times per year. That part hasn't changed. BUT I am told by some that this is their bodies resolving old infections that were suppressed. Time will tell and I will feel incredibly blessed if we can get this down to a once or twice a year thing...

[15-month update/Classical Homeopathy]

We have decided to work with a ND and are also starting to use some remedies (just belladonna at this point to help with the rages). More will be added as we get her through the intensive phase with constitutional hydrotherapy. We are experiencing some of that detoxing at the moment, and I appreciate you mentioning it as it is scary to watch.

 

DD is currently showing many skin reactions as we get further into this (something she has not had in this severity ever) - I can see why people stop as I have questioned myself if this is helping, or even making her physically worse! Once explained to me (return of old symptoms), it makes much sense and I am glad I was able to have an upfront discussion with the ND to clarify. It is actually amazing to watch when viewed from the curiousity of healing, tough though as her parent...

 

We are seeing much progress - before working with ND, at the end of march, dd's infection caused three intensive weeks of behaviors. She just had another infection last week, and behaviors were up and then gone in 5 days. Much to celebrate!!!

 

Love Belladonna! I have used it several times along with strep nosode for sudden onset pandas. Works like magic. Also, fabulous for fevers:)

 

Glad to hear of your progress!

[15-month update/Classical Homeopathy]

OK,

 

How do I find a good homeopathic practioner? I live in NYC.

 

Our homeopath is located in NYC. I do my consults via skype but you could also go to her office if you wish.

www.asdhomeopathy.com

Pierre is the main homeopath, his wait is long and consult fee is very high.

Angelica is who we see, shorter wait, lower fees and very very good

 

If I remember right, she is at Lexington and 32nd. haven't been to their office in a year...

[pandas son has pos culture for group a strep]

I kind of hesitated posting this here b/c I just read all the horrible things our kids are going through and I really don't want this to come across as gloating or like I am just being a pain in the rear with all my homeopathy posts. But I find the effective management of my two severe pandas sons' pandas sx to be a miracle (and if you know our hx you probably do too). I am just hoping to reach out to anyone in need of hope or a different path.

 

So here it is: we are 15 months into homeopathy. My son recently got sick with what appeared to be a stomach virus. Vomitted all night and we took him to the ER in the morning for IV of sodium chloride. They happened to notice his throat was red (no sore throat) and while we were there his ear drum perforated (again) and he developed a fever (which I got on top of with some remedies I had with me). Hospital staff decided to do a rapid and 48 hour cx. Rapid came back negative. they still wanted to start rocephin which I talked three doctors out of. Anyway, 5 days later my son was better and the hospital called to tell me that his cx came back positive for strep. We've been through this many times since starting homeopathy, but still it's always amazing to hear one of my kids has strep when I am not seeing any pandas sx. My mouth falls to the floor every time!

 

Coincidentally (or not, I dont' know) both of my sons went into a sudden pandas exacerbation within an hour of that phone call (I swear they must have been reading my mind and felt my stress?). One son pulled himself right out of it within 10 minutes. The other (who tested pos) was having a meltdown in the kitchen so I started dosing strep pyogenes nosode 200c, every 5, then 10, then 20 minutes for an hour. And it was over and has been over ever since! I am still giving him the nosode about twice a day to fully resolve the infection, but seriously (and this is where I will lose some of you b/c no one can believe it can possibly be this simple) we only had to deal with 20 minutes of pandas sx. Now with that said, he is still left with a lip-licking tic which will probably resolve over the next week (from past experience). It's how I will know I can stop giving the strep remedy.

 

As for my other son, he too got sick with vomitting and fever. I got on top of these easily (no ER visit) and he has had maybe 3 ten minute moderate pandas meltdowns which he is able to pull out of himself. I did give him a few doses of strep nosode to "keep him out of the woods" but it was almost not even necessary b/c his constitutional remedy is keeping him strong.

 

HTH someone

[PANDAS in infancy]

I honestly wonder if my oldest son's first exacerbation was when he was 3 months old, I just remember him being a BEAR to deal with during the whole month of feb following his first illness (bronchiolitis). But his definite first really bad textbook exacerbation was at 20 months following his MMR shot:(. Very clingy, crying all the time, meltdowns when things not going exactly his way (wrong cup, wrong bowl, blah blah blah) oh and a facial grimace with head turned to side.

 

My other son's first exacerbation was at 15 months. Sudden-onset eye tics and severe tantrums and instability (among many other things too complex to list, overlapping with his chiari malformation, yada yada).

 

they are 7 and 4 now and doing well but it's been a long journey to find dx and tx plans...