Stephanie2

Thanks for the compliment about the kiddos! Biocidin is available only through a doctor (usually an alternative med type doctor). You can google it...I think it is called Advanced Biocidin. It is supposed to be antiviral, antibacterial and antifungal. Yes, my son gets very silly (uncontrollable laughing) and hyper with yeast. He also wets the bed, wakes up at night and likes to jump all over the couch. They are different from strep which is: ocd, tics, rage and just plain angry at the world. It is so hard to find the right balance (killing strep without increasing yeast). There must be a way but we haven't found it quite yet! Stephanie

Hi Jenn, Again, thanks for the OT offer! I have a great SPD certified OT. I just wanted to comment that you probably DID have pandas patients and the parents didn't know it. PANDAS is very difficult to dx. No one dx'd my son, I did 9 months of research to come up with it myself... Stephanie http://thelight-stephanie.blogspot.com

I just posted this into a different thread (stomach flu). As I was typing it, I realized that maybe it would help someone who may be dealing with many of the same issues that my son used to have. I am copy/pasting that post into this new thread: We hired a DAN (Defeat Autism Now) doctor in March, this is similar to a naturopathic doctor, but ours is an actual MD. By the way, my son does not have autism, but is close at times. The MD first had us eliminate dairy and gluten. We then had the igg food sensitivity test done and he was also very sensitive to eggs, wheat, soy, etc... So we have eliminated all of this. Then I took it upon myself to do the feingold diet, which really helped. When we eliminated dairy, his allergies and severe croup/asthma went away completely! We have not used the nebulizer, steroids, etc... since Jan. Amazing! When we eliminated wheat, we noticed that his chronic hives drastically reduced and his daily stomach aches went away (however they come back during acute pandas). We also noticed his constipation reduced dramatically (later eliminated by very high dose and specific probiotics). With all this said, there is a chance that he has celiac (my 19 month old is also off wheat and many of his autistic-like characteristics disappeared), but we can't test for it unless we put him back on wheat. We also added many supplements which helped his immune system (you can see the list on my blog: http://thelight-stephanie.blogspot.com). We finally got the pandas dx recently and that has been our last battle to fight. My son's DAN really really wants me to fight it with Biocidin, a natural botanical broad-spectrum antimicrobial product. I tried and it did work at first, but then his symptoms came back (I believe that someone in the house is a carrier and I really believe it is me! we are all going to be cultured next week) so I caved and went to the antibiotics (which is now creating a yeast issue...ugh!). Stephanie

smartyjones, I could have written that entire post (we even started the elimination in Feb.!). We hired a DAN (Defeat Autism Now) doctor in March and we eliminated dairy and gluten first. We then had the igg food sensitivity test done and he was also very sensitive to eggs, wheat, soy, etc... So we have eliminated all of this. When we eliminated dairy, his allergies and severe croup/asthma went away completely! We have not used the nebulizer, steroids, etc... since Jan. Amazing! When we eliminated wheat, we noticed that his chronic hives drastically reduced and his daily stomach aches went away (however they come back during acute pandas). We also noticed his constipation reduced dramatically (later eliminated by very high dose and specific probiotics). With all this said, there is a chance that he has celiac (my 19 month old is also off wheat and many of his autistic-like characteristics disappeared), but we can't test for it unless we put him back on wheat. We also added many supplements which helped his immune system (you can see the list on my blog: http://thelight-stephanie.blogspot.com). We finally got the pandas dx recently and that has been our last battle to fight. My son's DAN really really wants me to fight it with Biocidin, a natural botanical broad-spectrum antimicrobial product. I tried and it did work at first, but then his symptoms came back (I believe that someone in the house is a carrier and I really believe it is me! we are all going to be cultured next week) so I caved and went to the antibiotics (which is now creating a yeast issue...ugh!). I think I am going to copy and paste this into a new thread. I have noticed that many women on here have children with allergy/asthma issues. Smaryjones, maybe you could copy and paste your previous response, too... Stephanie

Wow, I never thought about the fact that the probiotic could lessen the effect of the antibiotic (I DID know that the antibiotic kills the probiotics, unless it is s. boulardii, like florastor). Very good point! Stephanie

Having been through the DAN approach, I have learned a lot about alternative medicine and a little homeopathy along the way. I am no expert here, but I have to say that we have picked up a few products that have done wonders in my house for our immune systems, ESPECIALLY Oil of Oregano. Whenever someone in our house starts getting sick we start taking our various supplements and within hours it is gone. All four of us have been abx junkies in the past and NONE of us have had to resort to abx since starting the DAN approach (except of course Mr. Pandas, my 4 yo). But even my pandas son has had some success with supplements in combating step, but this last episode has just been too much and I caught it too late. My point is that there are things out there that can boost the immune system if you are interested. Here are some things that we use: Larix Oil of Oregano (need to get a good brand, like Oreganol from whole foods) High dose vitamin c (my kids get 1500-2000 per day, divided up - don't be afraid to really go up on this it's water soluble) Vit. D3 (my 5 yo gets 2000 iu per day) Biocidin - botanical broad spectrum antimicrobial. very potent and only available through a doctor. this one actually put a major dent in pandas symptoms. there is so much more, but thought I'd list a few. My favorite of the above is Oil of Oregano. We have kicked so many things around here with that. Supposed to use like a course of abx, for 10 days or so for cold, sinus infection, etc...it is antiviral, antibacterial and antifungal. Good luck! Stephanie

Yes, my son was dx'd with SPD before we knew about pandas. He has been in OT for 9 months now (with an OT who is certified in sensory integration training). I do feel that it helps but I have no real proof as he has been so streppy since then and we have not been on prophylactic abx. His issues with SPD are: auditory defensiveness (major with pandas episodes), proprioceptive input (crashes into things), vestibular input (spins), and a little tactile defensive (getting hair washed, etc...). I was the one who mentioned the weighted vest and it is wonderful! I mean it is like we gave him a drug...calms right down. I send it to school for him to use, too. We don't go anywhere without it when things are bad...supposed to wear it 30 minutes on/30 min. off, or as needed. Stephanie Shae had sensory issues during her exacerberation but they went away after she had IVIG.

Those have been my exact guesses. Also, I have read about "biofilms" and am wondering if he has strep he carries inside a biofilm in his gut which erupts when he is vomitting? Just some wild theories, but just trying to figure it out, b/c maybe if I can somehow learn how to prevent stomach flu I can prevent strep... Stephanie

I want to add a question to this: has anyone's child ever had hives/urticaria with an acute strep infection?

Has anyone ever seen a correlation with stomach flu and strep? I mean, each time my son has definitively had strep he has had the stomach flu (or something like it) 2-4 weeks before strep throat. I have witnessed this pattern 4 times now. Does anyone know why this would happen? Stephanie

Boy, I have a lot to say in this area, but I will try to keep it short and sweet! For a while we were suspecting that my 5 yo had autism. He was going through the pandas stuff and he was also on singulair and zyrtec which were just putting him over the edge. He tested close to the spectrum, but not quite. Anyway, as you can imagine I have done lots of vaccine research and contemplation. Also, my 19 mo has had times in his short life that I was sure that we were losing him to autism (mutism, very little expressive language, little social interaction, hypotonia, chiari malformation, devel. delay, you get the picture). So at this point we stopped all vaccines and hired a DAN doctor (Defeat Autism Now). The DAN approach has been phenominal for my 19 mo. He no longer has the language/social issues and does not appear autistic at all. In my very strong opinion, if we had continued with vaccines, things would be very different today (I noticed some of the problems emerge after 4 month shots). With all that said, I have to also make the point that my 5 yo went into one of his worst pandas episodes 2 weeks after receiving his very last vaccine - polio. This may be purely coincidental, but I have often wondered. I mean you inject something into their bodies that has an effect on their immune system...could it be causing this autoimmunity with strep? Can anyone really answer that definitively? I am not an antivaccine activist - at all! But I do feel that vaccines should be prescribed on a case by case basis and it is the parent's responsibility to do the research and evaluate his/her particular child's situation... Many autistic children have many different biomedical issues contributing to their dx, pandas being one of them. My child has pandas, gluten sensitivity, phenol sensitivity, sensitivity to certain allergy meds, low vit. d, low zinc, to name a few of his issues that moved him "toward autism". The DAN protocol has significantly moved him away from the spectrum. Pandas is the final key for us... but I will never do anything to move either of my children back toward the spectrum, including vaccines. I realize I am taking a risk, and I respect the parent who is unable to sleep at night having taken the same risk...there is no easy answer. By the way, the flu vaccine still contains mercury, and H1N1 vaccine is to contain squalene and mercury (last I heard, anyway). Stephanie http://thelight-stephanie.blogspot.com

Is your child taking Singulair for pandas?? Singulair caused major behavioral issues with my son... Stephanie

Hi, I just posted on another thread about this, but I thought I would pass this along. I purchased a weighted vest long before we got the pandas dx and we use it when he is in rage/meltdown/crisis mode. It really does help within 5 minutes. On those days when he can't even function, I use it and between that and ibuprofen we are able to go on with our day. It is also helpful for when he gets hyperactive and silly when he gets yeast from too many antibiotics (which we are currently using Diflucan for). I puchased mine from the following website, they give instructions on how to use it: www.otvest.com Best $100 I have ever spent (besides the zithromax)! Stephanie http://thelight-stephanie.blogspot.com

For my son the vest is best. We also have a weighted blanket and it just doesn't have the same effect as the vest. We use the one from this site: www.otvest.com Best $100 I have ever spent (well, besides the $$ we have spent on zithro)! It really helps with rages, but also with the silliness and hyperactivitiy he gets with yeast... Stephanie

I have wondered the same thing. My first bout with major depression occured with an acute exacerbation of my son's pandas (this is hindsight b/c we just received the dx). I have always thought that this occured b/c he was so unmanagable, but I am really starting to wonder if I get depressed when he has an exacerbation b/c I also have strep with him...I am going to be tested soon. Stephanie

When my son is at his worst, I use advil and a weighted vest (I have been meaning to start a post about this). The vest brings down the rage and hyperactivity within 5 minutes... Stephanie

Oh, I have felt this way so many times. And yes, these children are so lucky to have us as moms, I can't stand to think of the poor children who never get dx'd and probably have a terrible life b/c no one understands what they are going through. And I know how you feel about family not understanding what is happening in your home. My mom is kind of like this. She thinks that I need to stop bringing my child to the doctor's office all the time and just take him to the park and move on with our lives... Stephanie http://thelight-stephanie.blogspot.com

Hi Linda, I am on the south east coast (miami/broward/palm beach), but am willing to travel...would love some names. Stephanie

My son is in the middle of a pandas episode and he seems overly obsessed with skulls and witches and all things scary (when we go to Target, etc...). It really bothers me b/c I brought him there today so he could pick out a reward for doing "poopy on the potty" (yes, he is about to turn 5 and just got trained for BM!). All he wanted to get was a "bad" thing. He gravitated to all the evil things. I don't understand if that is just a boy thing or what, but we spent an hour in the halloween dept and he would have stayed there all day if I let him. I really try to keep him innocent and I am wondering if it the pandas thing that is making him gravitate to those things. Does anyone else's child do this during a pandas episode? Thanks for putting up with all my questions! I have been mainly lurking for weeks and now that I have learned so much, I have so many questions!! Stephanie

My son punches himself in the head when he is at his worst... Stephanie

I have heard that she will want to do the Cunningham test (we already have several positive throat cultures and we will probably have the whole family cultured by then as well), but what else should I expect? I guess I am specifically wondering if she will set us up with the proper abx (with the proper dose and duration). I mean, I already know that my son is a great responder to abx therapy, but I don't think he has been given the proper dose for a long enough time. EVERY time he goes off, the symptoms come raging back. I am pretty desperate for the proper abx ASAP! Will she come through on the first appt or will she make me wait until Cunningham? Also, what is her usual first-line abx and for how long? Also, I am in Florida and our first appt is by phone. Do I need to go see her in MD at some point? Thanks, Stephanie My Blog

Hi! I have a lot of questions in the last 48 hours it seems! I was wondering if some of you could educate me regarding the strep titers. We had both done a few months back and they both came back "negative", but it was about 4-5 weeks after a positive throat culture. So, when should the titers rise and what does it mean that we got a negative even though he did have strep throat? I will say this, at the time of the blood draw, most of his pandas symptoms were gone b/c we had done 2 rounds of antibiotics that worded remarkably well. Now, again about 4-5 weeks after another positive strep culture I would like to have his titers checked tomorrow. This time his symptoms are not gone after 2 rounds of abx (they come back every time the rx runs out). Do you think I am wasting my time? Also, will Dr. Latimer say that he doesn't have pandas if his titers are negative, or does she believe that that doesn't matter? Thanks!

I'm just wondering how everyone found out that their child had PANDAS. I have to say that it took 3 years before I figured out by myself that my child has PANDAS. Back in Feb of this year he regressed at the time of a throat infection (no one did a swab, they just said he had a throat infection...????!!!). This episode turned into tics and ocd behavior (which was brought to my attention by his OT). It wasn't until 3 months later that a 'doc in a box' did a random throat swab b/c he had a swollen lymph node on his neck. My son didn't even have a sore throat. It was over the next few weeks that I happen to put it all together (tics, ocd, positive strep culture) and I was only able to do THAT because I happen to have heard about PANDAS and knew what it was! I mean, 99.9% of the population doesn't know what PANDAS is. So it got me thinking. How many more years would my son and our family have had to suffer before a doctor would have put this all together before my son would have been diagnosed? And how many more children are going undiagnosed. The number has to be HUGE! Then to top it off, my SIL has been telling me that both of her girls (aged 5 and 6) are doing strange things out of the blue: separation anxiety, depression, sensory issues, ocd-type stuff. She did not get them cultured and the behaviors finally faded on their own, but we DO know that they were exposed to strep by both of my boys. So there you go, two more girls undiagnosed right in my own family! Then she (my SIL) goes on to tell me that her cousin was extremely violent and emotionally unstable growing up and he had all sorts of ear problems and tonsil problems. Then he grew out of it around puberty and he is now the most calm, loving individual that she knows!!! She said that her whole family has always been baffled by his change in behavior. Point is: when I read your posts it seems clear that most of you got a dx from some type of practitioner and it seems that I am in the minority among those who discovered the dx on her own. It makes me think that we/this group is the TIP OF THE ICEBERG; the lucky few who even know what our children are dealing with!

Peg, I am right there with you. I wouldn't say that my son is as bad as Sammy. He does eat and he can function (unless he is at his very worst), but I would say my son's case is up there. And I agree that when it hits young (I believe it started with my son at the age of 20 months) it is almost impossible to dx. He has received so many dx's along the way: developmental delay, cognitive disorder, Sensory Processing Disorder, Auditory Processing Disorder, Bi-polar Disorder, Oppositional Defiant Disorder. It wasn't until he was 4 and he started having tics and then our OT mentioned that he acts quite OCD and then a few months later we got a positive throat culture than I suspected PANDAS. And even THAT took 9 months of research to come up with. There was no doctor who handed that dx to me. What complicated getting a dx further was the fact that my son was on Singulair and Zyrtec through much of his little life. Those drugs did a number on his behavior, so we were not able to pick up on the extreme difference (waxing and waning) in behavior between strep infections. He went off of Singulair and Zyrtec and became a different child overnight (he must have been non-PANDAS at the time). We couldn't believe it! Then 2 months later he fell apart out of the blue when he developed a throat infection. That's when I was able to pick up on a waxing and waning pattern. I could go on and on, but the point is that a little public awareness really could have saved my family 3 years of trauma. We have spent so much money along the way and my marriage has really suffered. I really pray that this book changes things. I really hope she ends up on Oprah. When the public becomes more aware, the MD's will be forced to follow suit.

I have always thought that it is so controversial because much of the diagnosis depends upon parental feedback. I mean, a child doesn't have PANDAS unless he is "falling apart" which is up to the parents to decide. I have always found (and I have TONS of experience here as both of my children have multiple health problems) that it is very hard to get a physician to respect my observations regarding my childrens' health and their response to certain meds and treatments. Take for example how my allergist responded when I took my son off Singulair and Zyrtec and he did a 180 in terms of behavior. The allergist said, oh he's probably just having a good week. I get this kind of reaction all the time! And recently when I took my son in to see the pediatrician (who BTW accepts the PANDAS dx). After 2 rounds of antibiotics his PANDAS keeps coming back, so I asked her for another abx rx until I can get into see Latimer next month. She said, "oh, I get cranky when I am sick, too. He's probably just cranky because he's not 100% yet". I didn't even bother to explain that "cranky" is an understatement and that he is acting very ticcy and ocd. She gave me the rx, so I was happy. I get so TIRED of being doubted by the dr.'s, but that is what makes me so APPRECIATIVE when I find one who listens to me and works with me (example our DAN doctor in Miami and hopefully, Latimer). It's such a waste of time and aggravation to have a dr that doesn't respect our observations! We must think so much alike....that is what I have been thinking for weeks now...I'm trying to compose my thoughts a little better to start a new tread about it...