

Stephanie2
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Am I being too conservative with natural things?
Stephanie2 replied to Christianmom's topic in PANS / PANDAS (Lyme included)
From my interactions on the homeopathy message boards, I would say that everything he says in this quote really is true, even down to the "although not in every case". Most of the time, the moms report the above therapies interacting, but once in a while we come across someone who's remedy was not affected. I will say that my boys were on 25 meds/supplements when we started and there was a definite improvement when starting their remedies, so a few supplements will not interfere. My boys are now on 4 supplements each, but I am considering adding a couple back in. Oh, he left out antiviral therapy as being a possible antidote. -
6-month Classical Homeopathy update
Stephanie2 replied to Stephanie2's topic in PANS / PANDAS (Lyme included)
The author is on FB if you want to friend her, she can let you know how he is now. He is still taking his remedy as needed, I think he recently had strep and overcame it with his remedy. The way our homeopath put it is this...something made these kids "fall off the cliff" (in my opinion, genetics plus environmental toxins). She said that just because we fix the problem now doesn't mean they can't fall off the cliff again in the future. We are all born with susceptibilities to disease. The remedy lowers your level of susceptibility significantly, but it does not make us immortal, we still have to care for ourselves, expecially in this toxic world we now live in. In my opinion, in order to stay healthy one needs to clean up the water we drink, the food we eat (eat whole, raw foods, etc.), the products we use, the people we spend time with, the stressful lifestyles we lead, etc. If we do all that we lower our susceptibility, but who does all that 100%? That's where homeopathy comes in, cleaning up the messes we make of our health. With that said, some kids will not need the remedy after their bodies are healed. But here's the thing. Once you've experienced ultimate health, you don't ever want to experience anything less, so I tend to think that most people will go back to their constitutional remedy even if they do not have major chronic illness. A little depression and fatigue is all I need to want another "hit" of my remedy (of course it can be overdone, which is why it is good to keep a homeopath in your backpocket). I guess what I am describing here is hard for anyone to understand if you have never experienced homeopathy. -
"Let's Roll"----it's time to start digging, b/c pandas
Stephanie2 replied to eljomom's topic in PANS / PANDAS (Lyme included)
I have been down every last road you mention above. We used Scott Smith and Dan Rossignol for all of it and they will not "snub" any of it. While it did help pandas, we did end up with gut infections that made my boys unmanagable in the end. After a couple years the strep and the gut bugs were not doing a good job anymore at responding to their respective antibiotics...sigh. We went the route of classical homeopathy which addresses all of it with one remedy at a time and no need for testing. I dont' know who your pandas doc is, but it sounds like his answers pertain to the "purely pandas" kid, meaning the kid who ONLY reacts to strep and nothing else. It's just my 2cents but I think those are few and far between. If you are not ready for the homeopathy route, I say go with Scott Smith or Dan Rossignol. They will do all the testing you want and then some, and they know what to do with the results. -
Is that why down here in Fl it seems to be year round? Although I have to say I can ALWAYS ALWAYS ALWAYS rely on the middle of August strep and the end of January strep. Could set my calendar by it for the last 5 years. Just getting over our August bout now...sigh.
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OMG! Is this from the probiotics?
Stephanie2 replied to beeskneesmommy's topic in PANS / PANDAS (Lyme included)
I used to give my little ones diflucan starting at the age of 18 months, although you would be hard-pressed to find a GP to prescribe it. We got it from the DAN doctors. In retrospect, though, I don't recommend it cuz it's just going to create room in the gut for more pathogenic things to move in such as clostridia (not a pretty one at all). Also, what you are seeing with the probiotic most likely is a herx or die-off reaction. The urinary frequency might be part of the yeast die-off. Die-off symptoms should last 3-5 days, any longer and you might just be looking at a negative side-effect that is not going to go away (or an increase in pandas symptoms, in general, that may or may not be related to the probiotics). Hope that helps! -
I don't want anyone to think I forgot. I think we all got hit with our annual august strep infection in the last 24 hours here. I had been sitting here waiting for it...sigh. I'm nursing everyone back to health (including the wee hours of the morning...ugh). I really want to take time to thoroughly answer, so hopefully before the weekend is out. Plus I can then tell you if once again we survived strep/pandas without abx, which it is looking good...
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6-month Classical Homeopathy update
Stephanie2 replied to Stephanie2's topic in PANS / PANDAS (Lyme included)
I guess Ziva is going to give you the "deets", but just to give you an idea (and this is not really the norm) but for Eli I had the initial consult on Feb. 11 and TODAY was my one and only follow-up so far! For Bradley, I have had to have about 3 follow-ups since Feb. Angelica is very forgiving about follow-ups, etc. If you have multiple children with her she will try to manage them both at each follow-up appt if she possibly can. She also will recommend a remedy for the mom at most initial consults. I have learned the hard way that I should have taken her recommendation that I take Eli's remedy. I went off and got my own homeopath who prescribed a different remedy all together, but after a few months it has lost it's efficacy. Guess which remedy she is now suggesting that I take? Yup, Eli's remedy (not knowing that it's Eli's remedy). I learn some things the hard way... -
6-month Classical Homeopathy update
Stephanie2 replied to Stephanie2's topic in PANS / PANDAS (Lyme included)
Did you send me your update recently? someone did, I can't remember who and I can't find the email. It is hard to throw them in school "uncovered" but it does get easier with time, the trust part. Plus it is a little trial and error, the whole sip-dosing when they get pandas, etc. And sometimes people need to call Angelica/Pierre for an acute remedy when the constitutional is not cutting it with an active strep infection. I have been fortunate in that my boys' remedies always seem to pull them right out of illnesses. Hang in there and feel free to contact me in a crisis... -
6-month Classical Homeopathy update
Stephanie2 replied to Stephanie2's topic in PANS / PANDAS (Lyme included)
tpotter, I can put you in touch with some moms who use hpathy for pandas, most are not on this forum. PM me, I can get you in touch via FB. -
6-month Classical Homeopathy update
Stephanie2 replied to Stephanie2's topic in PANS / PANDAS (Lyme included)
Mary, is he a classical homeopath? If you are eager to move up the date, Angelica would be able to see you within the month and she has gotten a ton of pandas experience under her belt and is becoming very aggressive about treating pandas (we were one of her first guinea pigs). She can do the appt via skype, no need to travel. BTW, you mention more positive comments from me in the future! No kidding, as we enter strep/flu season, right? Yikes! -
First part is an update on my 6yo, second part is an update on my 3 yo. They have been without antibiotics and meds for 6 and 4 months, respectively. We have had life-changing results! There is a link to my blog at the end. Warning: very long!! Eli Eli is 6.5 years old with a history of autistic features (never officially diagnosed) and severe PANDAS, starting from the age of 20 months. Eli’s PANDAS became more persistent and more resistant to treatment when his baby brother was born because they were continually passing it back and forth. For those familiar with pandas symptoms, Eli had them ALL (including hallucinations). When we started treating pandas, a bad situation became worse when he reacted poorly to all interventions including antibiotics, steroids and psych meds. Eli became violently psychotic on these meds (having to physically restrain him for up to an hour at a time), but when we took him off of them, he couldn’t function due to the return of pandas full force (most likely due to chronic strep exposure in the house). With the meds not working and making things worse, and with insurance denying coverage for IVIG, I was forced to attempt to manage pandas with classical homeopathy. We consulted with Dr. Angelica Lemke (an associate of Pierre Fontaine’s, a homeopath in NYC who specializes in autism). For those not familiar with classical homeopathy, it is the practice of taking one constitutional remedy, prescribed by a professional homeopath, which stimulates the body to heal itself. The constitutional remedy is chosen from 5000 available remedies based on the patient’s unique constitution or “symptom picture”. On Feb. 11, after one of his violent episodes I gave Eli the first dose of his homeopathic constitutional remedy, Ignatia, after he fell asleep. That was the last night (after dealing with these episodes for 14 months) that I have had to restrain my son. When he woke up the next morning, he came to my bedside and announced that “we have a lot to accomplish today, mommy, please get up so we can start the valentine’s day cards”. A few minutes later I came out of my room to find Eli sitting at the kitchen table already working on his valentines. I wasn’t ready to admit it to myself yet, but I knew at that moment that we had found a miracle and that things were about to radically change in our lives. He also began coming home from school and telling me stories about his day! For the next nine weeks, Eli went on to be chronically exposed to strep by his brother and the most we saw of pandas symptoms from Eli was a transient fear that was expressed before bedtime, a cough tic, or a couple of non-debilitating OCD symptoms. Gone was his normal reaction to having strep in the house: vivid hallucinations, severe and prolonged meltdowns and debilitating separation anxiety (having to be pressed up against my body, couldn’t be separated an inch from me or he would have a severe panic attack – try peeing in that situation! LOL) About 4 months into homeopathy, I’m pretty sure we had strep move through the house again, but this time 4 of us had sore throats and Eli appeared to have an actual strep infection. Not only did he express fears, have a moderate level of OCD, experience sound sensitivity and a cough tic, but he also had 10 minute meltdowns. He also had stomach aches and nasal congestion and a sore throat. Compared to the strep infections of the past, all of these were manageable enough, but they all pointed to an actual infection. I did not have a throat culture done b/c I didn’t want to see the positive test staring back at me, intimidating me into turning to antibiotics. I just did what I always do…increased the frequency of dosing his homeopathic remedy. Within 5 days his pandas symptoms were permanently and completely gone (those with a pandas child can appreciate days, instead of months!). As far as the klebsiella, clostridia and yeast infections/behaviors which developed as a result of past chronic antibiotic use, they all come back from time to time, but they stay for a shorter duration, are much less in severity and remit with increased dosing as well. Not once have I had to turn to antifungals, antibiotics or steroids in the last 6 months to manage these infections/behaviors. Eli has lost all of his sensory issues completely (getting hair washed, loud noises, etc.). He no longer has separation anxiety or severe OCD. Eli’s bowel movements have become normal and formed, his dark circles under his eyes are completely gone but he still gets leg cramps from time to time (once every other week) and stomach aches (once every 5 weeks or so). He is also still dependant on high doses of magnesium and vitamin c to maintain regular bowel movements. His social interaction with his peers is as normal as can be (except for the occasional need to “control the situation”). Any “stimming” left over from his autistic features is now confined to the home. In terms of biomedical interventions, most of his meds/supps have dropped off over the last 6 months. When we started homeopathy, Eli was taking 25-30 supplements and prescription meds every day. As of right now, this is the list of supplements that Eli receives: Magnesium, Vitamin C, Calcium, Juice Plus, Culturelle, Melatonin. I have recently allowed some gluten infractions with seemingly no regression in gains or behaviors. I do suspect, however, that dairy infractions bring on asperger features still. Eli has taken up Tae Kwon Do this summer and has already acquired his yellow belt! Eli spends 3 hours a week with his instructors who know nothing about any of his health issues. He has also taken up tennis this summer and he, for the first time in his life, was able to take swimming lessons and is able to swim laps across the pool. None of these sports were possible in the past due to his emotional nature, his exercise and heat intolerance, his fears, separation anxiety and sensory sensitivities. Bradley Bradley is 3.5 years old with a history of early-onset autistic features after his 4 month DTaP vaccination. He is developmentally delayed, especially in speech (diagnosed moderate-severe speech apraxia and mild-moderate expressive language delay). He has history of low-muscle tone, torticollis, Chiari Malformation type 1, severe PANDAS since 15 months, chronic strep and impetigo, chronic alternating diarrhea and constipation since 4 months old, distended abdomen, enlarged head, severe eczema. Bradley had all the same symptoms of pandas that Eli did, and he had all the same reactions to the medical interventions, including the violent episodes, although his episodes would only last 5-10 minutes (sweet mercy!). Bradley’s autistic features were significantly impacted by biomedical interventions (literally came out of the corner and joined the family within a couple weeks of initiation of diet and supplementation). His PANDAS symptoms were barely managed, though, and it was becoming obvious that he was a chronic strep carrier, unaffected by antibiotics. He was starting to get more and more violent. Due to feeding issues (related to intestinal issues and swallowing issues related to chiari), he also appeared quite malnourished. When I initially started homeopathy, I did not trust in the process for Bradley and due to the fact that he was so severely impacted by pandas at the time – with an active strep infection/positive cultures, I continued to give him his constitutional remedy, Thuja Occidentalis 30c, but also tried a couple antibiotics to clear his strep infection. After trying azithromycin and augmentin with no success (rapid and culture STILL positive immediately after stopping antibiotics), I then tried Eli’s remedy, Ignatia, on Bradley. After increasing his potency, we finally got a negative culture and pandas behaviors were 80% gone. After awhile, though, ignatia stopped working for Bradley and I decided to give his remedy, Thuja, a chance again at a much higher potency (LM2). That was 2 months ago and we haven’t looked back! As I mentioned in Eli’s update, we had strep move through the house a couple months ago (myself, the babysitter and the boys all had sore throats, in addition to sudden-onset pandas symptoms). I did what’s called a “sip-dose” with his remedy. Bradley received a sip of his remedy (much more diluted than his normal dose) every 15 minutes for 3 hours. This immediately relieved pandas symptoms. About a week later, they reappeared and I sip-dosed again, this time only for 2 hours. PANDAS symptoms have been gone ever since. Starting Bradley on his own prescribed remedy, Thuja, has been nothing short of heaven sent. I’ve seen miracles happen with Bradley on this journey, but nothing like this! I restarted Bradley on Thuja 2.5 months ago. Immediately we witnessed Bradley do things we have never seen him do, and quite frankly were resigned to the fact that he probably never would. Here is a list of Bradley’s improvements over the last two months: full eradication of pandas symptoms (first time in 2 years), no more rages, responding to and initiating communication with acquaintances, teachers and peers, lost ALL sensory issues (sound, tactile, photosensitivity), potty trained himself, more eye contact, more interest in exploring new food options, impetigo fully cleared up after a year of failed mainstream and alternative interventions, improvement of speech apraxia (increased vocabulary, increased articulation, increased word-finding). The most remarkable thing about Thuja is that it has returned Bradley to his initial temperament when he was a baby and small toddler. Before PANDAS, I always called him “sunshine” b/c of his blond hair, blue eyes, chubby cheeks and infectious, non-stop grin and giggles! Bradley is back to being the happiest child on the block that everyone falls in love with (and boy does he know it!). Like Eli, Bradley was taking 25-30 meds/supplements per day. Bradley is now down to the following: Juice Plus, Magnesium, Vitamin C, Culturelle . Bradley used to be on a very strict gluten and casein free diet. I have recently allowed some gluten infractions with seemingly no backslide, although I am watching him like a hawk (since we suspected celiac disease). I am also happy to report that Bradley’s immune system is so much better that he is now able to attend preschool, where he will be receiving speech and oral-motor therapy. Another gain we have seen with Bradley in the last 4 months is gross motor ability and less “ataxia” from his Chiari Malformation. Due to his hypotonia (low muscle tone), Bradley has always been a little behind in the area of gross motor development and had an abnormal “gait”. Shortly after starting homeopathy, Bradley was able to climb furniture: the couch, the very high bed in the master bedroom, the pantry shelves – yikes, the playground equipment! Also, Bradley has always suffered from ataxia from his Chiari Malformation (he would literally “fall to the floor” out of the blue while he was standing or walking). As far as I can tell, Bradley’s ataxia is completely gone! I have to believe that homeopathy is allowing his brain inflammation to decrease to the point that his cerebellar tonsils are not as herniated as they once were (part of the brain that was/is herniated past the skull into his spinal column). He also does not experience any pain at his chiari site, although this was becoming less and less of an issue in general, even before starting homeopathy, thanks to a last minute steroid taper one of his biomed practitioners did a year ago. For those interested in pursuing homeopathy, I must stress that it is not wise to run out and try Ignatia or Thuja. I always hesitate to even mention my sons’ remedies, b/c inevitably someone emails me asking where they can get them. There are many homeopathic remedies which are helping pandas children, and an even bigger selection of remedies which are helping autism. Each one is selected for each child’s unique symptom picture and should not be used without the guidance of a homeopath (preferably one who has experience with children with special needs, especially pandas if the child has pandas). For example, one thing that thuja is good for is vaccine reaction, specifically reaction to DTaP. Personally, I would not want to give this to a child who has not had a DTaP reaction, b/c it could actually create the symptoms of a vaccine reaction in a child who has not had one. Would not be pretty! And one of the things that Ignatia treats is hysterical meltdowns. If your child does not suffer from these, giving Ignatia could cause these meltdowns. I also want to stress that classical homeopathy is not easy and it is not always immediate. One of the goals in homeopathy is complete and permanent “cure” of the illness. But this can take time and there will be days when the children backslide. I find one of the hardest things about implementing it is getting the timing of the dosing right (usually once every 5 days on average, but there are occasions where it needs to be dosed as often as every day or as little as once every 3 weeks). It requires constant observation of behaviors and skills. If you dose too soon, you could make the child feel worse. If you dose too late, you risk the child having a setback. Finding that perfect dosing time is stressful and requires you to rely a lot on your instincts about your child (which can take a few months to hone). Also, the transition of managing symptoms with traditional or natural medicine to a homeopathic remedy is a lot of hard work, too, and requires guts (the first month off antibiotics was one of the hardest things I’ve ever done around here), observation and plenty of judgement calls. Sometimes in severe situations, it also requires that each family member be treated because over time autism and/or pandas becomes a family “disease”, where each member of the family can be permanently affected and you all rub off on each other’s ability to heal from the situation. This couldn’t be any truer in our home. After 5 years of struggling, each of us has been severely emotionally, mentally and physically impacted, even my husband who is out of the home the majority of the time. If you are interested in pursuing classical homeopathy and you have questions, feel free to contact me, but please read this page in my blog first which may answer any questions you have quicker than I can reply to your email: http://thelight-stephanie.blogspot.com/p/getting-started-with-homeopathy.html
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Post-traumatic Stress Disorder
Stephanie2 replied to Stephanie2's topic in PANS / PANDAS (Lyme included)
Smartyjones, my mom takes sepia and it has helped her so much with her panic-y issues! She does nothing but smile these days! Amazing! Anyway, I have an appt this week so we'll see what the homeopath thinks. In the last week I "snuck" a dose of my oldest son's remedy and it has helped so much but I'm still right on the edge of the next meltdown. Yesterday the boys were fighting (verbally) in the back seat and after 5 minutes my physical and mental response was over the top. I literally felt like I was going to pass out, became very fatigued, and it took everything I had not to literally slam on my brakes and kick my little ones out of the car! LOL! Not good. I used to have amazing patience. Gone. I guess the good news is that I did NOT slam on my brakes and make them walk home! For what it's worth, I'm just ducky when not in their presence! Ugh... It has also helped me to realize exactly what is happening and that I DO have control over this response. I took my boys to the playground the other morning and started having trouble breathing thinking about the possibility that one or both of them will have a major tantrum when they are told it's time to leave. I just mentally tried to control my breathing, recognized that my fear is mostly irrational and luckily they were quite compliant getting back in the car. I have a feeling it is going to take a long time for me to realize that I can "trust" my boys' new behavior again. Until then, these outings and experiences are almost just as exhausting for me as the old dysfunctional outings were. It takes a lot out of me to face my fears. Ladies, while I'm glad to see I'm not in this boat alone, it truly makes me sad to see so many of you respond that you are going through the same thing. I thought for sure that I would just go back to work and move on with my life, and I quickly realized that I am not the same person I was before this thing hit our home. -
Post-traumatic Stress Disorder
Stephanie2 replied to Stephanie2's topic in PANS / PANDAS (Lyme included)
Shannon, i think your psychologist is absolutely right and believe it or not my sons' homeopath said the same thing and this is something that I am trying to convey to my husband: these kids really can only get as well as the weakest link in the house. My boys are absolutely not going to be 100% until I am 100% and I know that. Part of the remainder of their healing is going to depend on my now dealing with this PTSD with the same intensity that I dealt with their pandas. AND to add to that, i also think that my husband and I need to then go back and work on the collateral damage to our marriage. There is no way a child can feel whole when a husband and wife can hardly recognize each other anymore. Honestly, I thought that managing pandas would be the end of this journey and it so is not. Living down here in Florida, i always liken it to hurricane season. You can "hunker down" for the hurricane and you can jump for joy that you survived when it's over, but that's just the beginning. There is cleanup to do in the aftermath - and while the hurricane only lasts a few hours, the cleanup can last weeks. And when you've dealt with hurricane after hurricane for 5 years with no time in between to clean up, well you get the picture. What a mess! -
Post-traumatic Stress Disorder
Stephanie2 replied to Stephanie2's topic in PANS / PANDAS (Lyme included)
I am using a classical homeopath who is very successful within the autism community, so my boys each get their own constitutional remedy. I also have them on several supplements from our biomed days: vit c, magnesium, calcium, culturelle, Juice Plus and a tiny bit of melatonin for one of my boys to make bedtime easier. Before homeopathy they were each on 25-30 meds/supps. I am astonished by how I have been able to DC these and still acheive better results than before with their one remedy. My oldest has not needed any antibiotics in over 6 months (no prophylactic either) and my youngest has not been on antibiotics for over 4 months. And they have both had strep during that time, their remedies got rid of it (I have before and after cultures!). Amazing, really. Life changing for us. -
Post-traumatic Stress Disorder
Stephanie2 replied to Stephanie2's topic in PANS / PANDAS (Lyme included)
Michael, i dont' know if i'm sensitive to flourescent/wireless, but i certainly minimize these exposures for all of us around here. Also, i think we talked about the PTSD/lyme connection before and i would assume is a factor in my case (I have several reasons to believe lyme is a factor for myself and my boys). I will say, though, that antibiotics/herbs are a no no in my house right now due to the problems we have had in the past with them. With that said, it is a good reminder that really this probably has to be approached medically as well as psychologically, and unfortunately with time (i'm just not all that patient!). -
Also, I wanted to pass along that on one particularly bad night during the steroid, I gave my son Ativan to calm him down but it had the opposite effect. He violently raged for 4 hours that night. I don't suggest ativan, I think there was some kind of interaction with the steroid cuz in the past he did not respond to ativan like that. In the end, Risperdal really helped while we were waiting for the psychosis to drop off (but wasn't risperdal pulled from the market since then? I don't know...).
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My 6yo experienced SEVERE steroid induced psychosis back in January. I wasn't thinking psychosis in your case until you mentioned the "break from reality" part with him hearing voices, that could be a little concerning. For my son, he was obsessed for days on end with me calling the cops to send his brother to jail for spilling water on the tile floor. Yes, obsessed that I need to call the cops on his 3 year old brother. He would tantrum and rage if I didn't either pretend to be calling the cops or somehow convince him that I was going to call the cops later (to which there would be constant reminders, leaading to another rage, etc.). At one point, when my husband had my 3yo out, I told my 6yo that his brother was in jail just so I could get an hour off from the constant rages. So he proceeded to run out into the street in his PJ's to tell all the neighbors with the most serious of expressions that his brother was in jail. Needless to say, the neighbors were very confused and looked at me for an explanation but I couldn't tell them the situation cuz that would risk my son going into a massive rage in the street. Nightmare. Now that I hijacked your thread with my own sob story (sorry!), I would suggest calling your doctor and possibly arranging speeding up the taper to get him off of it. And for what it's worth, the above scenario is what lead me to break from the antibiotics/steroids completely. We are now doing classical homeopathy with Pierre Fontaine with tremendous success for both boys.
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Post-traumatic Stress Disorder
Stephanie2 replied to Stephanie2's topic in PANS / PANDAS (Lyme included)
Yes! The way you describe the anger is me! I was never an angry person before. I, too, get so angry with my 6yo over trivial things. He even looks at me and comments, "mommy, stop getting mad!". I get angry with my husband, my mom, my family, the pharmaceutical companies. It's all coming to the surface now that it's (for now) over. I tried Rescue Remedy actually, maybe it was a really bad day but it almost made me feel worse! I will probably give it another chance, though. Am I near a pandas support group? I AM a pandas support group! LOL! Actually, I am currently a group leader in Florida but have completely neglected my "duties" there! I have to get back to holding meetings or pass it on to someone else. I have to say, though, I'm not sure if being around other pandas moms would be a good move for me right now cuz I just relive the experience over and over when I hear their stories and I am horrified for the children who are currently suffering. That's part of the reason I am not on this board much anymore. Emotionally, I just can't take it. You make a fabulous point about therapists, and take it from me don't ever settle for one who doesn't know pandas. The last one I went to (a year ago when we were still knee deep) was very concerned that I was making up this illness, and/or making up the fact that my children had the dx (she didn't say it, but it was ALL OVER her face). She wrote down all the names of their doctors, and was very concerned about the boys' "biomedical doctors" and my insinuation that they were vaccine-injured. She was treating me like a crazy conspiracy theorist. She also told me to "not let myself become so emotionally involved when they are having their tantrums"...OH, REALLY?!) It was all too much and after two visits I never went back. -
As my boys are getting better (and better and better), I am just sinking! I mean I was depressed when they were going through pandas and all the medication side-effects, but now I am really feeling the affects. I panic every time one of the kids has an "age-appropriate" tantrum or discipline issue. I panic when we go places where we have, in the past, had scenes and I have had to carry one of the boys out kicking and screaming. I panic when we are on a playdate. I am panicking that it is august (strep every year in august for the last 5 years). I panic when my son goes to indoor playgrounds. I am panicking b/c my husband's workload is increasing. And when I say panic, I mean I have this fight or flight response (which may or may not be visible to those around me, I have this amazing ability to pull off the "I have it all together look" when I'm really crashing inside)that gets triggered that, on paper, just makes no sense. My boys are the healthiest they have been in years. I can take them anywhere pretty easily, yet I dread going anywhere with them. My husband is baffled by my behavior b/c he was not here for 90% of the violent episodes, etc. He is trying to be understanding, but his attitude toward me right now is not helping the situation. I'm not really sure what to do with this. I have an appt with my sons' homeopath for next week, so I'm hoping she can work a miracle like she did for my boys, but I am also thinking maybe I need to look into some "exposure" therapy or CBT. Anyone know the best course of action? I have been down this road before, and I did come out of it in time (after a traumatic birth experience), but I really don't feel like waiting for the "tincture of time" this time around. I mean pandas could rear it's ugly head again and I need to be ready.
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Oh and sorry to hear about the vaccine viral shedding!!? Are you referring to the flu-mist? Do you have the lovely pleasure of having all the kids in school receive the flu-mist at the same time, right there on campus?? We do...I kept him home for a few days (1. to make sure he didn't receive the vaccine by accident, and 2. to keep him from having kids sneeze on him right after getting the vaccine shot up their noses).
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Sarah, actually I have always hated those places. But here's the difference. Now that we are doing homeopathy, I find that their "tolerance" is much higher when it comes to strep exposure, or any germs in general. In the last 5 months, the only time I have seen my older son become emotional/OCD out-of-the-blue is when he goes to chuck e cheese or some other indoor playground. Other than that he has an immune system of steel (MAJOR KNOCK ON WOOD HERE...MAJOR LOL). Anyway, the update is that my older son came right out of it with a couple doses of his remedy. My younger son required me to "sip-dose" him for 3 hours with his remedy and then he was good to go. We seem to be back on track (again...KNOCK ON WOOD)!
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Many swear by it. I tried it with my boys and it did offer relief for a good 3 months, at which point we had to do a round of antibiotics. At that point I probably should have put them back on it (after abx was done) but I didn't. A couple months later we pursued homeopathy instead (with more lasting success). The dosage we used: 500mg, 3x/day (20% oleuropins), away from probiotics. I believe some websites claim that OLE will not affect probiotics but I didn't trust that claim. Expect some possible die-off (herx) reaction for the first few days. You could start low and titrate up.
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OK, I'm just going to come out of denial right here and now (LOL!), my oldest son just woke up with a bad ear ache and congestion. I've been sitting here thinking about how I had a brief sore throat this week, and our sitter (who comes 2-3 times per week) had a sore throat earlier this week. I'm going to go ahead and assume strep is lurking... I just gave my son another dose of his remedy, hoping I can push this back... As a side note, I am starting to dislike indoor playground facilities, with Chuck E Cheese being at the top of the list...sigh.
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PANDAS starting months after strep inf. ?
Stephanie2 replied to ziva's topic in PANS / PANDAS (Lyme included)
From what I hear, the first onset can happen weeks/months after a strep infection. I believe it happened that way with both of my boys (way back when...). The only other thing I can think of is that he developed a clostridia infection from the double antibiotics (did he receive probiotics?), but since you have two other pandas boys and he did have strep recently, I'm thinking pandas. Mabye the antibiotics didn't clear it, or he is just now reacting with high antibodies...?