Stephanie2

I wonder why she is taking on so much if she can't handle it? I mean, she is stringing people along, people who desperately need help ASAP. I have been waiting for a month to see her...if I knew that she was not going to come through, I would have made an appt with someone else. Now I may have to get on another waiting list elsewhere! I have 2-3 more days of zithromax, time is sooo running out and I know he will fall apart when we run out. And ya know what kills me? All these docs that have cut us off from abx, if I were out there trying to get him an antidepressant, they would be writing it like crazy! I would have more than enough of that!! Just blows my mind. Well, I have an appt with a new DAN doc who I have researched. He usually does zithromax long term and he cultures the whole family, etc... But that's next week, and who knows if HE is going to come through b/c our titiers are low and maybe he will think that means it is not strep! Maybe when my child starts raging, I should carry him into the ped's office and say, "FIX HIM"! But then again, I'll walk out w an antidepressant....very deep sigh. Thanks for reading my angry rant!!!!!!!!!!! Stephanie

As of right now 8:45 pm, she still hasn't called. I have been stood up 2 nights in a row...is this a common occurance with Dr. L? Also, I need to get my hands on a good antibiotic...do you think she will do this over the phone? I got one reply that she probably will not. I am wondering if maybe I should just cancel this phone consult altogether... I have an appt with a new DAN doctor next week...maybe I can stick it out until then...ugh, so aggravating! Stephanie

Michele, Why wouldn't they (Dr. L and K) give you an antibiotic? So, is your child now on Pen VK? Is it working? Stephanie

Faith, yes when I stop the zithromax he goes into terrible pandas symptoms...I just can't get an MD to keep him on it. I do know that he had strep (positive rapid test) and we have tried to take him off several times and he goes terribly backwards. My only guess is that someone in the house has strep (we have yet to be cultured)... No, we have never been to see Dr. Latimer. This is our first consult, and as of now, 6:15 she has not called and I am very discouraged. I have tried twice to call her cell phone. Stephanie

OK, this is a vent with a question... We had a phone consult scheduled with Latimer yesterday at 4:00, I had my MIL here to watch the kids and the office called and said that Dr. Latimer would call me at 5:15. So, I had to let my MIL go home and my husband had to leave work early to come watch the kids. Then the office called and said that Dr. Latimer was cancelling our appt and that she wants to reschedule for tonight at 5:00. So, once again I had to have my husband come home early and when I called the office at 5:03 the phone had already been shut off for the day...So now I am left hanging and I have no idea what time she is going to call (assuming she IS going to call) and my husband needs to go back to work! And to top it off I have PMS and this is really annoying me!!! So my question is, what time does she usually call at night? AND do you think she will come through with an antibiotic over the phone? We have 3 days of zithromax left and if she doesn't give me one I will have to order some from Canada or something (since we have already tapped out the pediatrician, the DAN doctor and the walk-in clinic). I guess I am panicking - just a little! Stephanie

In my experience, here are our signs of yeast: silliness (so much so that he cannot follow directions, eat his lunch, etc...), bedwetting, and crashing into and jumping off of the couch ("bouncing off the walls type of behavior"). I think also "spaciness" can be a yeast thing. I have gotten so good at detecting yeast by his behavior that I can predict on what nights he will wet the bed and I put a diaper on him... With that said, I think that if the laughter seems more genuine, rather than manic and out of control, then he is probably just learning to enjoy life again (he probably feels so free without his ocd anxiety). I would really caution you to consider putting him back on probiotics (keeping in mind that yeasty behaviors will get worse for a few days before they get better). Maybe you just need to try a different strain/brand. Saccharomyces Boulardii is really good b/c the antibiotic cannot kill it (it is a "good yeast" that you would have to dose away from the nystatin). And I agree with peglem, I would take yeast over pandas ANY DAY! Stephanie

The reason I am asking this is b/c my son tested at a 29 on the CARS evaluation (an autism scale, where 30 and above is considered "on the spectrum"). We have had several psychs/therapists tell us that our son has a "different affect" like an asperger or pdd-nos child, but that he is not quite on the spectrum. I would say that I agree with them. So we have been with a DAN doctor since March who has done many interventions and with the exception of pandas, I feel that my son is very far from the spectrum now. But here is what I am wondering... We have done so many supplements/diets that all really seemed to show an improvement, but as we were adding these things, my son was in and out of pandas episodes (looking back). So now I am left to wonder which of these interventions really worked and if maybe 90% of his issues all along have been pandas related. So if he didn't have pandas, would he not have ever tested close to the spectrum? I wonder this all the time, b/c I am wondering if I can take him off the gluten/casein/soy free diet, but the other day we tested soy and he seemed to become immediately hyper and started flapping his hands. So maybe his issues were really a conglomerate of things...? I have to say that these days, when he is pandas free, he appears to be 100% normal. Wondering if anyone has any insight... Stephanie

Hi, I will try to answer all of your questions! I used to frequent the autism yahoo groups b/c my 5 year old son tested close to the spectrum but not quite on the spectrum (also my 20 month old showed signs of autism early on but we did not have him tested, just jumped in with interventions which have been very successful). Both of my children are recovered from all signs of autism with the exception of my 5 yo's pandas issues (and the baby's mild speech delay). With that said, the autism groups is where I learned to rotate antifungals...something about if you use any particular antifungal for more than 4 days, the yeast begins to become resistant to it. I did not do any type of antifungal rotation until we began daily use of antibiotics for pandas. I am still developing my system, so I can't give you too many specifics. My son is 44 lbs. For the antifungal herbs, I basically do 1/4 to 1/2 the recommended dose for adults on the label: Grapefruit Extract: 1-3 drops per day (you have to be careful with this one b/c it has the potential for liver issues, just like regular antifungals). Pau D'arco: 30 drops per day Biocidin: 5 drops per day (not sure if this is enough...?) Oregon Grape: haven't figured this one out yet. Biocidin is only available through a physician. Maybe you could contact the company to ask which physicians sell it...? I get it from Andrew Levinson, our DAN doctor in Miami. But maybe you could just use Oil of Oregano in place of Biocidin (in my opinion, OoO is stronger anyway). Not to further complicate matters, but some of these herbs are high in phenols which can cause some hyperactivity. Sometimes I give a digestive enzyme with it called Phenol Assist by Kirkman Labs. I also put 2 cups of Epsom Salt in the bath every night to help process/eliminate the phenols. You can learn all about this on the autism boards which discuss biomedical interventions, if you are interested. There are many moms on there who's children do not have autism but only have pandas, adhd, etc...very educational. I do not go on those boards anymore b/c I am focused on tackling pandas... Stephanie

Also, it seems to me that if you have a completely dysfunctional child (like my 5 year old when he is in acute pandas), the age of the child really matters. I mean, when my 5 year old hits me and says mean things, they don't hurt as much as I would imagine if he were 12, 13, 14. And, on days when he cannot help himself, at least I can carry him to the bathroom and pull down his pants for him, or I can spoon feed him his dinner, I can 'force' him to take a bath and I can get him dressed and he can sleep in my bed when he is too scared, etc...I can't imagine trying to deal with a dysfunctional, helpless 12 year old. With that said, I'm not saying that having a 5 year old pandas child is easy - he has been pandas since 20 months old, so he has missed out on some real developmental opportunities along the way and once we tackle this thing we have a lot of work to do b/c I don't think he has the "life skills" that a 5 year old should have. I have not been able to teach him these things consistantly b/c we have been too busy just trying to survive... Stephanie

Kayenne, My thoughts on antibiotics: the more they are prescribed, the more yeast and clostridia develop in the gut so the child ends up with chronic diarrhea and/or constipation and all of this can lead to "leaky gut" which leads to multiple food intolerances which leads to developmental disorders (autism, adhd, etc.). With that said, when antibiotics are not prescribed, yes we have the issue of ongoing strep, lyme and a bunch of other things that can also lead to developmental disorders. That's why I like working with the DAN doctors b/c they are really educated about all of this and they weigh risks vs. benefits with antibiotics and if they need to prescribe one, they attack yeast/clostridia hard with antifungals and high-dose probiotics. They also do their best to boost the immune system so that the child can fight off the strep while on antibiotics. I happen to have streppy guy who gets a lot of side-effects from antibiotics (meaning, he ends up with yeast/diarrhea/constipation) so we will always use a DAN doctor even while consulting with Latimer. Stephanie Ya know, it really has only been about 20-25 years that the drs have gotten a lot more careful about antibiotics, so there was about 1 1/2 generations where antibiotics were given aggressivly for sore throats...RF has practically disappeared...so I bet there are a lot of people with a genetic weakness (maybe an immune deficiency?) who don't know it because the previous generation's strep was treated more aggressively...sombody please tell me that I'm off the wall in my thinking...sometimes I feel like I just draw too broad of conclusions about things...I am convinced that the squimishness of drs. to prescribe antibiotics has contributed to a lot of rising disorders.

I posted this in another thread but thought I would pull it out and start a new topic. I am cutting/pasting the following paragraph from tonight's blog post. Keep in mind that my 20 month old has an ear infection (hmmm...strep?) and my 5 yo had moderate pandas symptoms today...should have stayed home: Chaos with the Mayor: Today DH received an award by the police department, which was awarded in front of the West Palm Beach City Commission Meeting (which, by the way, is televised locally). DH thought it would be nice if we could be there...yes, we...all of us...including the kiddos. So we gave it a shot. First, B (20 month old) started screaming while we were waiting (and waiting...and waiting) for DH to be called up. Then E started playing with the seats and getting restless. I knew it was all going downhill when he loudly announced to me that "your stinky breath is going into my nose" (in my defense, I was sucking on a peppermint, I guess he doesn't like the smell of peppermint? Oh yeah, he has Sensory Processing Disorder. And...well...smelling is a "sense" that he cannot process...I guess?). Finally, DH looked at me and said "take the kids home and put them to BED"! So we got out of there, but not before E attempted to go talk to the police chief who was giving the commission her crime report (which included one more murder than last year...that much I got!). I guess we were a sight to see! I didn't put THIS in my blog, but he started to have a meltdown on the way out of the meeting b/c "I want to see daddy get his award", but we made it out before the real battle ensued...phew! Stephanie http://thelight-stephanie.blogspot.com

Hi Isabel, We have quite a protocol set up with my son to control the yeast while he is on an antibiotic and it really seems to be helping. But before i get to that, I have learned the different symptoms of strep vs. yeast in my son: strep: anger, negative attitude, defiant, ocd behaviors, tics (motor and verbal) yeast: silliness, laughing uncontrollably at nothing, wetting the bed, crashing into or jumping off of the couch. We are still working on the strep protocol (we have a phone consult with Latimer tomorrow...yeah), but I think I have a good yeast protocol going: 1st we used 10 days of diflucan (rx antifungal) to get the yeast under control, which really worked. He calmed down and stopped the bedwetting. Then I started a 4-day antifungal rotation: 4 days of Biocidin, 4 days of Oregon Grape, 4 days of Pau D'arco, 4 days of Grapefruit Seed Extract. Then we start over again with biocidin. We also give a lot of probiotics including and especially Saccharomyces Boulardii. There is a list of my son's supplement regimine on my blog (although I havent' updated it to include the antifungal rotation). By the way, my 20 month old son (the "supposedly" non-pandas son) also tested positive for strep in a comprehensive stool analysis and I am thinking that is where my pandas son keeps getting strep from...??? I am going to run this theory by Dr. Latimer tomorrow. Hope this helps! Stephanie http://thelight-stephanie.blogspot.com

Thank you so much for starting this thread. I always feel so alone when my son becomes oppositional and aggressive. I feel like everyone around me gets to have peace (including my husband who loves his job and is currently out of the house except for one hour of the kids' waking hours) and it makes me feel so angry that I have to go to battle with my son (I posted yesterday that he is doing well, but after missing a couple doses of abx, we had a rough day today). I am so "war-torn" and it just takes so much out of me! I just want some peace and to stop walking on eggshells. I said to my husband the other day that if my ds was my boss, I would quit. If he were my boyfriend/husband I would get a divorce, etc. My dh thought it was a terrible thing to say, but did any of us ask to deal with dysfunction on such an intense level? It is so hard some days...And then I feel terrible for not thinking more about the nightmare that ds is going through. Oh, the myriad of emotions...sigh. Oh, well...if anyone wants a good laugh, I wrote a blog post tonight about our experience at the West Palm Beach City Commission Meeting tonight. I attempted to bring my 18 month old who has an ear infection and my pandas son to this meeting and it ended in embarrassment and disaster! What was I thinking?? Trying to be normal I guess...silly me. :-) Stephanie http://thelight-stephanie.blogspot.com

Last week I posted that I thought that I was the one in the family who keeps reinfecting my son. I came to this conclusion b/c twice in the past 6 weeks I have been away from my son for 5-6 days at a time, and during those times he ran out of zithromax (long story...problem with local docs) but he didn't backslide like he does with me when he is off zithro. So, my husband and ds came back on friday and he did great until today (we missed a dose of his antibiotic and we missed a dose of my antibiotic, which is why I believe he went a little backwards today). BUT, even though some symptoms came back today (vocal tics and some crying over stupid stuff), it wasn't that bad and I immediately increased his antibiotic and I could see him getting better afterwards. I am finally feeling like I have some contol over this illness. I know that we may still have some backsliding in the future, but for the first time in over 3 years I have the proper tools and knowledge I need to manage my son and keep him healthy (and keep some sanity in the house). What a good feeling! We have our first appt (phone consult) with Latimer on Tuesday, I will post more then... Stephanie http://thelight-stephanie.blogspot.com

When my son was on zyrtec and singulair, he was an animal, and not the cute and fuzzy kind! Also, as soon as we started seeing a DAN doctor my son's allergies/asthma/croup disappeared. I'm not 100% sure what did it but I suspect it is because we went gluten and casein free (assuming the casein was the most importatnt part in terms of allergies) and also some immune-boosting supplements. You can see the list of the supplements on my blog: http://thelight-stephanie.blogspot.com Stephanie

My son has had a positive throat swab when he didn't have a sore throat (but he did have a swollen lymph node in his neck and a fever). Also, the throat swab could come back negative and then you would need to ask the doctor to do a throat culture (72 hour culture). BTW, my son gets a stomach flu 2-4 weeks before getting strep throat - EVERY TIME! I have never understood it! Anyway, he is usually great during the time of the flu/fever and then his symptoms act up for a few days...then they go away until he gets the full-blown strep. Very weird pattern... Stephanie

The doctors are lead to believe that PANDAS is 1 in 2000 so it is not at the top of their list of things to rule out. Plus, I have to say that I didnt' know that the strange things that my child was doing fell into OCD rituals and compulsions (until my son's OT brought it up to me). So, if the parents are not bringing up OCD/Tourettes to the doctors... That's why we need to start with the parents. If the parents are educated, then they can diagnose the disorder in their own child and then go to the doctor and demand treatment. THAT is when the docs will get on board, when the parents demand that they do... It sucks that we have to be in charge of our own health care, but that's just the way it is... I remember a year ago...my son happen to NOT be in a pandas exacerbation but he was acting crazy (rages, tics, etc...). After being told that my son is bi-polar, I did some research and found out that Singulair and Zyrtec cause these symptoms. My son was on BOTH. When we removed them, it all went away (until his next pandas episode...sigh). The docs were ready to put my kid on a mood-stabilizing drug, when all he needed was to stop the singulair/zyrtec. The docs are just misinformed... We have been screwed by mainstream medicine countless times in my house (don't get me started on how a local ped neuro tried to do needless brain surgery on my 18 month old, or how a gastroenterologist tried to do surgery on my stomach when I was 22 when all I needed to do was quit my BIRTH CONTROL PILL!). Stephanie

Both of my boys see a DAN doctor and there has been a remarkable turnaround with both of them. Also, In my opinion you should pursue the PANDAS diagnosis. If your child has pandas, getting it under control could change his/your life! My son has pandas and we can't function without an antibiotic... Check out the pandas board on this site...tell your story and see what the feedback is. Stephanie http://thelight-stephanie.blogspot.com

Have you been on the pandas discussion board on this site? Have you checked into whether or not he has PANDAS? That's really what it sounds like to me, especially if the symptoms came on abruptly... Stephanie http://thelight-stephanie.blogspot.com

We went gluten and casein free and it is not easy...6 months later I am still trying to find a variety of foods to feed my boys. BUT I really believe that going casein free is what did it for my son. I first eliminated milk, but it wasnt' until I eliminated ALL TRACES of milk/casein that the allergies/croup went away. Good luck! Stephanie

I think that both the parents and the medical community need to be educated. It took me over 3 years and TONS of money and effort and heartache to find out what was wrong with my son. And I was the one who came up with it through months of research on the internet. If only there were an oprah show about it so that I could have had that "ah-ha" moment years earlier, we would not be so tapped out now...financially, emotionally, physically, etc. In my opinion, the more parents that become aware that their child has this disorder (and I don't believe that it is only 1 in 2000) then the more the medical community will be forced to become educated b/c there will be a greater demand for proper medical attention. Right now they don't have to become educated b/c they wouldn't be able to diagnose a pandas child unless he/she were wearing a sign that says "strep" on their forehead and washing their hands over and over in the doctors office. Also, my son's DAN doctor said that his wife makes him watch oprah at night on tivo!! Stephanie

My opinion is that advil would be a better choice. BUT, I am going to keep this one in the back of my mind, just in case. Make sure you use dye-free just in case red dye is a trigger for more aggression. Stephanie

Here is what I know about the cultures. My sons' Dan doctor said that the whole family has to get cultured in the throat, sinuses and anus. So we are supposed to go do that next week and it does not sound like a fun family outing to me (not to mention the doctor himself will be performing the cultures...how will I look him in the eye again...?LOL! OK, I've given birth twice, I can do this...). My husband is trying ot weasel his way out of it, but I told him "sorry, bud!". But I am pretty anxious to see who has what... Stephanie

Colleen, maybe I am a carrier, but we did have a couple of good months over the summer, so I don't know... I am working on getting my whole family cultured. Also, we have an appt with Latimer on Tuesday so I hope she can help us sort this out... Thanks, Stephanie

Wait! This may be a good thing! When you give a probiotic there is usually a 3-5 day period where a "yeast die-off reaction" occurs. What happens is that as you are adding back the good bacteria, the yeast in his gut starts to die and as it is dying it releases toxins that go to the brain and make the kids have all sorts of behavioral problems. In my son, this is what a yeast die-off looks like: uncontrollable laughter, hyperactivity (like crashing into and jumping off of the couch), wetting the bed and night-waking issues and fatigue. I'm not sure, but some kids have tics with yeast as well. There is a definite difference between yeast and strep behaviors with my son. The strep behaviors are more anger/rage/meltdowns, loud vocal tics, ocd stuff. If this is what is happening in your child, you should stick with it because this means that he has a lot of yeast that you need to get rid of and a better child will emerge when it is done. Stephanie http://thelight-stephanie.blogspot.com