Stephanie2

My boys wet the bed when they get yeast, which they get from antibiotics and/or steroids. Others have also confirmed bedwetting with yeast. For some reason we do not get bed wetting with strep.

Our progress with classical homeopathy: www.thelight-stephanie.blogspot.com

My 6yo was more of a classic pandas kid (all symptoms) but he did suffer from tics, which at times were absolutely debilitating for our whole house b/c he directed them at family members (I think it bordered on "tourettic OCD")...poking, pushing, etc. BUT we got the most severe of those under control with one infusion of IVIG. All that was left when we started homeopathy was a cough/throat-clearing tic. I would say I noticed a dramatic reduction immediately, however, we have had strep in the house for 5 weeks so every once in a while I hear a throat-clearing noise but it is barely audible, probably would not even pass as a tic, but I know it is a "remnant". I certainly can't say what homeopathy would do for tics. I do have a friend who is just now starting homeopathy for her son's tics, so if you check back with me in a month or so I can tell you what the response has been. You could actually get Ignatia Amara 30c at Whole Foods and probably any healthfood store that carries homeopathic products. BUT ignatia was prescribed to us based on the emotional lability, OCD, anxiety aspect of his pandas. It DOES have an indication for tics, but I don't know that it would work for a child who doesn't have all the "drama" with it. There are many remedies out there for specifically tics, but I don't know much about that.

That's perfect Stephanie thanks. I've noticed there is a Homeopathic group in Texas that has experience treating PANDAS children. Is that who is treating your son? I too would feel more comfortable going to a homeopath who is familiar with PANDAS. The only issue I have is the fear of taking him off his current antibiotics that are sort of working, to try something new. I'd hate to see him slip back to the point he was at last fall. I'm also enjoying the sanity break I am currently experiencing. ;-) Having said that though, I still want to continue to educate myself about ALL of our treatment options. Thanks again! Vicky I think the group you are referring to in Texas is Homeopathy Center of Houston (or something like that, I have a link on my blog). I decided not to go with them b/c it costs about $500-1000 per month. Also, they are not classical homeopaths. The do sequential homeopathy. I went with Pierre's group b/c they do classical homeopathy which is easier, cheaper (much) and is supposed to heal more deeply. I have no regrets for my 6yo, but if I don't see more progress with my 3yo soon, I may switch him and one of the options will be Houston Homeopathy Center. Either way, he is still responding to DAN but quite frankly it is expensive and exhausting and I would like to cut back on DAN and go full-force homeopathy. I don't blame you for not wanting to rock the boat. You can still start a remedy even if he is on antibiotics, though.

As long as it helps 51 kids and only hurts 49 kids, they can continue to say that the benefits outweigh the risks. Sick, really.

That is great about the rages going away in your son! That has been the biggest plus so far for my 6yo as well. He has had rages (hours long, as well, despite medication) for 14 months. To have this 5+ week reprieve has just been amazing for us. He is a totally different kid. Anyway, he was treated with his constitutional remedy, ignatia, which covers most of his pandas symptoms (emotional lability, OCD, anxiety, even tics). BTW, ignatia has been very useful for one of my friend's 2 pandas boys, as well. She did not see a homeopath, she just gave it a try one day. My younger son's remedy (the one who has had pandas for the past 5 weeks) was not cutting it so we did several other remedies but none of them so far have "stuck". This is a big possibility that I did not stick it out long enough with a few of them, at times I was desperate to resolve things so I jumped around alot. I am hoping that his constitutional remedy will help in the future to prevent strep infections to begin with (he had an infection when we started it). It seems like when a kid gets the correct remedy prescribed to him, he is better able to not get strep to begin with. Then if he does get strep, then you dose the constitutional remedy frequently until he is better. If that doesn't work then the homeopath "takes the case" and prescribes another remedy that fits the pandas profile of symptoms better. If THAT doesn't work then you go to the strep nosode. That seems to be the general pattern from staying in touch with many pandas moms who are seeing the same practitioner. I am not sure that it matters who the homeopath is, although i am more comfortable with one who has experience with pandas so they understand the urgency and they also have had experimented with several acute remedies with other kids. The unusual thing about my kids is that one of them has had a more complete and immediate resolution of symptoms than is normal (and he had many diagnoses, including being close to or on the autistic spectrum), and the other one is taking much longer to resolve a pandas episode than is normal. Hope that helped.

Aye yi yi, I didn't even think about the fact that maybe they could try to use it to force vaccines. I am sorry, that sounds extreme, but so is one in six kids with a mental disorder. I don't trust that "they" will know when to stop. As I always say, the minute someone tries to force a vaccine on my children, I will be the first one on a plane heading out of the country with my boys.

They will use this to come up with "solid evidence" that vaccines do not cause autism. Watch. You will see. The study will be flawed but the peds will latch onto it b/c it is the only way they can justify what they do and the only way they can sleep at night. I'd like to know who the external panel is, what their ties are. In my opinion, there is NO WAY they will conduct such a study if they know that there is even the slightest risk that the data will show a link. They KNOW that the vaccination program will fall off the map if that were to happen and then we will have big problems with an unvaccinated population. They will do everything they can to make sure the data will come out the way they want it to come out. Just like big pharma does. I used to be a drug rep, the "inside" is very ugly.

He was sudden onset at the age of 20 months (my younger one at the age of 15 months). We got the diagnosis at the age of 4.5 and have been seeking resolution since then. We did manage to get pandas under control with mainstream meds (antibiotics, IVIG, steroids, spironolactone, LDN) but he still got strep infections several times per year (like 5), then would suffer the antibiotic side-effects in between (severe rages, yeasty behavior, etc.). It was a vicious cycle that we couldn't seem to escape.

Thought I would pop in and give an update on my boys. After having all treatment options shut down on us (severe side-effects from antibiotics, psychotic rages from steroids, and uncovered IVIG) I was forced to seek alternative treatment - homeopathy. I sought out several other moms who were able to get their severe pandas kids off antibiotics with the help of a specific homeopath in NY, Pierre Fontaine (who specializes in Autism, speakes at Autism One, etc.). We are now 5 weeks into treatment and the response from my 6yo has been nothing short of miraculous! He no longer suffers from pandas symptoms or the infections that were caused by antibiotics and were causing rages. More importantly, he was repeatedly and directly exposed to strep within our home for about 3 weeks during this time and did not suffer an exacerbation (he is off all antibiotics and herbs). I will say that at one point during the 3 weeks of exposure, he started getting stomach aches, exhibited mild fears at bedtime and did some mild, transient baby talk. None of this would warrent a pandas diagnosis, there was none of the OCD or severe emotional lability that is his classic presentation. I treated him with what they call a "strep nosode" in homeopathy and these symptoms went away within 24 hours. I then took him to the ped for a rapid and 40-hour culture, just to be sure he did not have an infection, they both came back negative (his brother, who repeatedly sneezed on him, shared cups, etc, tested positive on the same day. I have never had one child get strep and the other not at least become infected or have a severe microbial exposure and exacerbation). I will also mention that the typical heat and exercise intolerance that he used to suffer from are completely gone. His left-over autism symptoms are gone. He has gone from 25-30 meds/supps per day to 13. We used to dose meds 5 times per day, now only twice. In short, his life (and therefore our lives) are completely different! Now onto ds3. He developed a strep infection 3 days after my older one started his homeopathic remedy. However, he himself had not yet started his remedy so we were behind the 8 ball on that one. Looking back, I should have started a course of zithromax right away but I was so excited about my older son's success that I "held out" for a few days until his initial consult. Bad idea! We tried remedy after remedy over the course of several weeks, each only offering 2 days at a time of relief. I will say, however, the remedies did obliterate an ear infection, bronchitis and a persistent asthmatic cough that would have required the use of a steroid. The underlying strep infection, however, persisted. We would get rid of it (as evidenced by negative rapids) and then it would come back (as evidenced by positive rapids). After 3 weeks of this, I did 5 days of high-dose zithromax. I am waiting on the culture results, but I will say that zithromax, at that point, hardly made a dent in his pandas symptoms. The DAN doc is suspecting that the infection is gone but the inflammation is out of control b/c we waited so long to start the abx. He may be right. One of my friends (fellow pandas mom) tried my older son's remedy on her son and got instant results (within 20 minutes, which is what we experienced), so I decided to try my older son's remedy on my younger son. I saw an immediate improvement. We are now 48 hours into it, so I am not sure if it is going to hold, but I am confident that if I persist, I will be able to help my younger son, as well. Things are tolerable, and he is off antibiotics, so I can't complain. I hope this helps someone, who like me tried it all and either did not get success or experienced intolerable side effects. If you look on my blog, last week I posted several other pandas success stories, as told by a couple other moms. There are also several interesting pandas/homeopathy links. The Light - Stephanie

Let's think about this, though. If the justices were to allow justice to prevail, how hypocritical would that make them and all the other crooks in washington look? They have to keep "scratching" the backs of the good ole' boys or the whole screwed-up system will falter. Follow me? I don't think anyone intended to hurt children in the process, but now that they have no one wants to point blame. Sickening. Absolutely sickening.

Wow, I watched it this morning, seems like classic pandas to me. Both of my boys have it but only my 3yo gets violent like that with strep. The child was sitting there ticcing as he was speaking to Oprah. Please go on the website and leave a comment for this family! If enough of us mention pandas, not only will this child get help (and get out of the group home) but maybe Oprah will bring light to this illness.

I have been told that this may be a pandas child. http://www.oprah.com/showinfo/Exclusive-The-7-Year-Old-Who-Tried-to-Kill-His-Mother?FB=fb_tows_021811_1

I'm thinking...print this out and show to your ped. But then again it will probably just tick him/her off and he/she will just say we are all just a bunch of wackos. (well, I guess that's not so far from the truth ! Ha! )

If my child is very yeasty, i get a die off reaction w/ diflucan. Its pretty quick- w/in an hour of dosing so I usually give it when she's starting to fall asleep so she sleeps through that time. I have taken the same approach. It works well as far as getting them to sleep, but sometimes backfires b/c they then wet the bed from the die-off and/or they wake up for several hours during the night. Mainly I give during the day at a time that I can easily follow it up with charcoal one hour later to alleviate the die-off. Die off's a *&^%$

My ped thought I was nuts, too, when ds3 developed pandas, and it didn't help that he was only 15 months at the time. How do I know it was pandas? sudden onset eye tics and ragey tantrums during fever, at the same time that ds6 had pos strep test. No doubt, even the local neuro suggested it without me bringing it up. Anyway, after getting over my own denial and devastation (he had also been recently dx'd with chiari malformation and we were looking at some strong features of autism at the time - it was all so over the top for me), I took him to a DAN doctor who also has 2 boys with pandas and didn't bat an eye at the fact that both of my boys have it. Personally, I would not waste one more minute with a doc who doesnt' fully "get it", it's just going to frustrate and exhaust you. I have a couple docs you could get established with (in person) and then you could do it all over the phone. PM me if you want more info.

Yes, it makes sense. BUT, I still think there is something about a mom being "in tune" with her child. Also, I think that most moms possess this "mama bear" instinct that if someone (something) hurts her child she will growl and maybe even attack. I learned early on that I have this very strong mama bear instinct toward my children. Intense, and it's not something I decided to have, it's just there and I just pounce when those buttons are pushed. I honestly don't think most men are programmed that way. I can't understand it, not having that protective instinct. And I don't blame them, they just don't have it. With all that said, my husband is a very attentive dad, more than most, but he doesn't come close to me when it comes to the well-being of my children. Sometimes I wish I didn't feel this way toward my boys...it's exhausting when they have health issues b/c I am constantly on alert, so hard to relax and put it out of my mind. Sometimes I wish I was that mom that puts her kids on psych meds and when that doesn't work put them in an institution or let them fend for themselves in this life. Would be easier for me. But that's not what I'm made of. I think most of us on this board are the same way, that's why we are fighting our husbands, our doctors, our in-laws, our relatives and friends, the teachers...and a rare disorder that has no path laid out before us. (OK, I'm really getting going here). We are the strong ones, even though we feel week. Most moms would have thrown up their hands by now. Am I right? Oh, and he's still not talking to me...

Just thought I would add that dh is still not talking to me. OK, so maybe I didn't exactly step in so tactfully, but COME ON! Can't he see I am stressed out? Do I have to handle ever situation so perfectly? Ugh! Exhausting... Oh well, I guess if he's not talking to me at least that means we are not fighting at the moment. One less battle!

I have two DAN doctors, one is in Edison, NJ (not far from NYC, I suppose). He has two pandas sons and is very well-versed and knowledgable in pandas. He has also helped my youngest tremendously with "spectrum" issues outside of pandas. He is not on the DAN list, but one of the best. contact info: Scott Smith www.drneubrander.com (he has not yet been added to the website, but you can use the phone number listed. he used to be with rossignol and bradstreet in florida)

Oh, I'm with you! Sometimes I feel like saying, "we are on the same team, remember?" That's exactly what I told him last night! I used to bring dh to all appts but have found that he usually ends up having to leave the room with my out of control child/children. So it is a wasted day off. Also considered bringing a family member to watch the kids in the waiting room while dh and I sit with doctor, but that wastes precious babysitting time we need elsewhere. I don't know...personally I don't think my young children care. They do see that he is highly involved in all aspects of their lives, hopefully that is what they remember. I just have the "disapprovel" that my children get when they are not "good enough". Tough one.

Yes, we currently use Dr. Rossignol and I highly recommend him. While we don't have all issues resolved (well, we did and then...bam...strep), he is very good at managing pandas. He is very thorough and he can do IVIG right there in the office. He is open to steroids as a treatment modality as well. He also has some other safe meds and/or supplements that he can use for inflammation/immune modulation, which I think has kept us from having to pursue IVIG with ds3. We did one round of IVIG with ds6 and it did help, but I think if he had been on the other meds he may not have needed it, in fact I am sure he wouldn't have needed it. He will also test the gut to make sure the she is not developing infections from the antibiotics. He will test immune function, mycoplasma, inflammation markers, and he can order Cam Kinase test. He is an expert in probioic use, etc. Highly recommend. BTW, I know there are several others on here that use him. If you dont' get any other responses in the next day or so, keep bumping this up until they see it. Also, I can get you in touch with them if you PM me. I like to talk to at least 3 people before hiring a doctor...

Breathe in, breathe out... I've read other posts in which you mention your dh, and I got the impression he was "on board" with this whole thing? Maybe I'm mixing dads up here... BUT, I have to say, in defense of the men, I wonder how they feel when their wives turn into pill-pumping machines, making special meals, going to a million appointments, spending COUNTLESS hours on the computer...being consummed by PANDAS. I am pointing fingers, just trying to say that it's hard, hard for dads to accept the children's illness, hard to accept the financial stress, hard to accept the "loss" of their wife. I have spent so much time and energy "researching" PANDAS, I've become so consummed by this thing, I have neglected my relationship a bit. When things get tough, and I get the "really?" kind of look from dh, I simply let HIM handle it, let HIM see how impossible it is to "reason" with OCD. Maybe you can take a couple of days off... let him be with the boys 24/7, and he'll see what you are talking about. My dh was, at some point, totally NOT getting this, and giving me a hard time in many ways. I had to put my foot down and spell it out for him, and let him know in no uncertain terms that I was NOT going to be treated that way, that I was just trying to do what was best for my son, and how his treating me (us) badly was just making the whole thing worse. I think all PANDAS moms need a break every now and then. My husband has suggested I go away somewhere, but I have not taken him up on it because I much rather use that money towards treatment. But, I do take little breaks here and there I'm probably not being very helpful here, just kind of thinking aloud. Just try to reconnect with your DH, he is probably just as stressed out as you are, just showing it in a different way. I completely agree with you. It is not easy on them either. Sometimes it is like he doesn't have a wife. When the kids have pandas (and all the other issues/infections) so do I. Nothing easy about this situation. I just think his expectations are unrealistic, for myself or my boys to meet. He wants to support me. He usually does. I just think his frustrations get in his way sometimes and he blames it on everyone around him. I had to remind him tonight that he is not the only one who didn't sign up for this. There are 4 people here who did not sign up for this. Join the club, ya know?

Thank you PANDAS 16, I will show it to him (but then he will know I blasted him on ACN!!). Still worth it. I am very concerned about how my boys will perceive themselves knowing that their father blames them for things that are out of their control. A pandas mom has battles on all fronts. Regarding the doctor thing. Just to pick your brain, why do you wish that your dad was there, exactly? So that he coudl hear first hand what the doc said? I don't get the feeling my boys care. But they are very young.

Phasmid, I am sorry it has come to that for you. But in a way, I wish I had the option to do the same sometimes. I don't have anyone I could go to when I need to "get out of here". My mom fights me tooth and nail on their dx's, tx's and diet (she thinks they are malnourished without gluten!!??). Sometimes I think the very thing that drives us apart is the very thing that keeps us together. I can't do this without him... Sarah, that was a good move to have him read Dr. K's site. We are veteran's at this, he gets it about as much as any husband can. But he will never get it like I do, so I find myself continually having to tell him to back off! Leave the poor kids alone, they are going through enough, ya know? I know it is this way in almost all of our houses. This was an especially hard month and today was an especially hard day...enough so that I am venting on a public forum...sigh.

So, I had to reduce ds6's azith this week b/c it was causing his gut bacteria to come back (with all it's lovely aggression). He is due for a dose tonight and I can tell, he started baby talking today. We all got in the car and he was trying to tell me a story (which is rare these days) and my husband harshly admonished him for baby talking. I tried to tell him that it's b/c he is due for azith, leave him alone I want to hear what he's trying to tell me. So my husband goes off about how he wasn't doing it a minute ago and I should stop spoiling him. He only does it around me, yada yada (which was the same pattern back in sept when he had strep). So he STOPS THE CAR AND TELLS ME TO GET OUT - A HALF MILE DOWN THE STREET FROM OUR HOUSE!!!! Is this what I get for standing up for my child? I hate this disease!!!!!!!!!!!!