Lena_Dmom

Yes! Epsom salt bathes are great! Even my never-stopping 3.5 year old boy sits there as long as we let him. If you can find one with Lavender (it also has extra minerals like Zinc in it) - it can do wonders! I also read that yeast (which tends to flare up like crazy when one is taking abx) can cause quite an insult on the body. I am not sure if your daughter on any anti-yeast or probiotics but perhaps that is something you could consider? You don't need Rx for probiotics (just watch out for those that have strep strands in them - don't get those). I wish I could be more helpful! Take care of yourself, please, and be safe! For her benefit as well!!!

Colleen, he is on 200 mg/ 5 ml of Arithromycin once a day for 2 weeks... We then need to return to the Dr.'s office for a re-evaluation and further discussion in terms of next steps. By then he would have been on 4 weeks of Amoxicillin (250 mg/ 5 ml x 2 day for 4 weeks) with pretty minimal results. And 2 weeks of Arithromycin. Yikes! He is a little guy (3.5 years old) so I am sick to my stomach that I'm pumping him with all this junk... but he is so miserable! To you second question - no, we have not discussed prophylactic abx. Are they the same abx but smaller dose? How much smaller? And for how long? At this point it feels like we're getting hooked on abx almost like on narcotics. Like when can one try and NOT give them? Yeah... I read about toothbrushes and toys here... I also scheduled a visit to PCP for my husband and I to get tested (in case we're carriers). And we need to get our dog tested too (so I read)... Somehow at first I thought, ok, no big deal. This is treatable. You take abx and it all becomes distant albeit scary memory... CLEARLY I had no clue what I was thinking at the moment! Thank you all for your suggestions! Lena

Well, moms, you were right. If we did not see any improvements by day 11, we saw nothing more promising by 14 days. In fact, his tics are worse now. His moodiness is too - in fact he even told me yesterday (after a bite incident at daycare when he bit a kid) - "mommy, I am a bad guy today." So finally I got our doctor to call in an Rx for azithromycin. I know that there are various abx for PANDAS. We have never tried this one before. So we'll give it a try (keeping my fingers crossed). He's also on Nystatin 200,000 IU x 2 day to help with yeast. So we'll see. I am being all cautious - washed his toys that he sleeps with, got him a new toothbrush... and off we go with the new abx (starting tonight). Gosh, have I told you lately how much I HATE this PANDAS thing?! Thank you for your advices! Keep 'em coming! Lena

Our nutritionist, Kelly Dorfman, who many of you know suspected PANDAS. I had strep last Christmas but we never tested our son... Then in early Spring the "classical" both-eyes blinking started. We took him to see his at-that-time traditional pediatrician who said "Seasonal allergy." After every allergy drug failed... we were not sure... but then tics went away and we thought "phew... bad dream." Then in June tics came back... along with sensory sensitivity... An appointment with our dev. pediatrician came up - she examined and said "You're thinking Tourett's, aren't you? It is not. Just seasonal allergies." I emailed Kelly who we have been seeing for a year and she immediately said "Check him for strep NOW". Luckily we have already switched to a DAN! pediatrician who did not put any fight and immediately ordered blood work. Fortunately or unfortunately, depending on how you want to look at it, his titers came in very high. So he was put on abx. We're VERY early in the game and the abx that we're on isn't working for us (in fact we're seeing some worsening of symptoms after being on it for almost 2 weeks) but we feel fortunate to have the dx. Even though our kid does not match every symptom (yet! I have to say because in the last couple of days it is like he got a hold of a check list for PANDAS and started going through it developing and checking off every darn symptom!) I emailed dr. K and he confirmed - that given all that I've described to him - he couldn't think of any other dx that would explain our son's situation - PANDAS it is.

I couldn't agree with you more - whatever OBJECTIVE data you can collect to demonstrate changes in your child's behavior before/after vs. during PANDAS episode is priceless. For example, I took daycare daily reports from last week and read them to my Dr. over the phone, pleading to switch us to a stronger abx. There were statements in those reports such as: "D required a lot more redirection this week than normal." "D bit a child, completely not his usual behavior." "D did not follow classroom rules, had frequent meltdowns and cried every 15-20 min, sometimes over very minor issues..." Having these comments come from everyday strangers, figuratively speaking, who don't even know how to spell PANDAS - was a great back up for my "mommy stories"... ... Now if he would just CALL IN that darn Rx already!!! I also think that a routine use of abx is a scary thought in our society today. My own mother did a double-over when she saw a bottle of abx in our fridge for a 30 day supply (little that she knew that it was second of 3!) I was even criticized on another forum for giving my child abx rather than natural alternatives, like Olive Leaf Extract... I guess one needs to live through a PANDAS episode before recommending to try something that might take a year to lessen symptoms... Perhaps some parents are lucky and their kids are great responders. Mine is not. But controversial or not - I am SO thrilled and consider my boy to be so blessed that we found out a root cause of his gazillion symptoms that his own very well-known developmental pediatrician called "just corky behavior that is falling through the cracks of DSM IV" - LOVE IT!

Happy Birthday, Josh! Great job, little one! Hats off to mom Vickie!!! There is no bigger hero in the world than a loving mother! It is a beautiful post... made me cry but gave so much hope!

First of all - thank you ALL for finding the time to reply to my questions. You're the best! Vickie - I think we have seen a plateau perhaps 5 days into taking Amoxicillin... and then it seemed to start going downhill... He has pee accidents, VERY whiny, very needy (mommy, get this and mommy, get that while in the past he'd be perfectly self-sufficient). Kelly - he's 3.5 years old and weighs 40 lbs. I too wonder if 250 mg x 2 day might not be strong enough. In fact, my husband said from the day one "why play around and waste time and his GI health? Put him on something strong and potent and kick this bug once and for all..." Now I wonder if he had a point... ShaesMom - this is his first episode that we're treating as a PANDAS episode but he had tics on and off for about a year, etc. However, to your point about developing resistance to Amoxicillin - he was on it probably monthly from about 4-5 month of age until about 1.5 years of age for recurrent ear infections (the usual 10 day course). When we first started this time around (in August) - he had an ear infection, an inflamed lymph node and PANDAS galore all at the same time. So he was put on 10 days of Amoxicillin and seemed to respond well. We even though his tics went away... Then he was off Amoxicillin for perhaps a week until we got a hold of his Dr, all agreed that he has PANDAS and got our next Rx for Amoxicillin for 2 month course... Smartyjones - our DS is on Nystatin too. That is to try and battle his yeast that flares up every time he's on abx. He's also on 2 probiotics and activated charcoal to wipe up die off effects of yeast... EA Mom - great suggestion about checking for strep both my hubby and me. We'll do that! So, the consensus is... give it another day or two (to get to the famous 14 days) and if nothing changes - call the Dr. and ask for either a higher dose or rather a stronger abx (seems to be the preferred option)? Thank you, again! Lena

Morning! Wow, I lasted like what... a week without you?! Here I come again - need to tap into your knowledge. DS has been taken Amoxicillin (250 mg/ 5 ml x 2 day) for 11 days now. He is also on Nystatin (100 000 UI/ 2.5 ml x 2 day) for 4 days and I plan to get him up to 200 000 in a day or so. So question - should we have started seeing a difference in his PANDAS symptoms by now or is this too soon? His emotional liability is through the roof. He clings to me in the morning during daycare drop offs, cries a lot at daycare, gets irritated at a drop of a needle (we have a luxury of a behavioral specialist observing him the last two weeks in prep for assigning him therapeutic support staff (TSS) who'll be providing 1:1 assistance 3-4 hours a day at the daycare). So she has been filling me in. He is also aggressive towards other kids (even bit a kid) which is quite out of his character... He also had several potty accidents this week. So at first I thought that perhaps it is his yeast flaring up. But his motor tics (right shoulder and right arm) are still present... Should we stick with Amoxicillin for another week or two?... Or should I call Dr. and ask for something stronger to start DS on? Like Zithromax (azithromycin)? Also, his Nystatin prescription says (on the bottle) - 100 000 UI x 2 day. Should it be given more frequently? I thought to have a luxury of x 2 day it needs to be something stronger like Duflican? As always, thank you a million in advance for your help. He's been quite miserable lately, even daycare teachers noticed that he needed a whole lot more redirection this week and has been an emotional mess. I just cringe at the thought of giving him Amoxicillin for another month or so if it does not do the job for him... Lena

My son has been given an additional probiotic - Multi-Flora by Kirkman's. When I reviewed it closely, it has 1.1 billion Streptococcus thermophilus... I brought it up with the doctor but got "...Usually, it is not a problem. They are obviously related but are not the same. In very sensitive kids we avoid the S. Thermophilus but most kids have been fine. Try it and see. If you are uncomfortable, order the Lactobacillus Duo." What are your thoughts, experienced parents? The probiotic he is on now is "Detox Support" by Klaire Labs and it is strep-free... The Multi-Flora is an additional since he's going to be on abx for 2 months it seems like and has issues with yeast (major!) Thank you Lena

Hi Colleen, we got 250 mg/5 ml x 2 day for 30 days... So I think it is pretty mild... I will follow all of your advice in terms of watching him closely and if I see no difference in let's say 2 weeks - I will ask our doctor to switch to a stronger abx. I have read that most use Zithromax (azithromycin) so I think that's probably what I'll ask for. Thank you! Lena

We're in Allentown, Pennsylvania

Thank you, all! Wow, this is the most responsive forum I have come across! You're absolutely right - the doc's rationale was to start with the most narrow spectrum antibiotic to reserve "heavy artillery" for later if needed. We did see his tics go down a lot on a full strength Amoxicillin so I think that lead him to believe that we should stick with it. So did Kelly Dorfman (I saw from posts that several of you know and trust her). But, I am now puzzled that if his infection is intracellular than keeping him on this wonder-pink-substance will do doodle-squad... and in the meantime we'd be loosing 2 months. So I guess what I will try is to give it a go for 2 weeks and see if tics are gone and if his lymph node's inflammation is down. If not, I will be calling our Dr. to switch to something stronger (that was my husband's reaction, by the way - why play around? Let's just do it - ask for a "real antibiotic!" Men, I'd tell ya!) I also emailed and got a response (wow!) from Dr. Kovacevic (the Chicago doctor). He offered to do a phone consult for us. Have any of you done it? Is it worth it? Will he shine some additional light that our DAN! and Kelly Dorfman might not be aware of? Thank you, again, and I hope that one day I will learn enough to be able to give back to this forum!

We're very new to PANDAS. Well, actually, not new to the illness but have just been diagnosed. We - meaning my 3.5 DS. He just completed 2 weeks of Amoxicillin (5 ml x 2 day). I think his tics have gone down a little but with his yeast getting out of hands - his behavior is still very much off the wall. He has just been prescribed 2 more months (I am in shock - I know, I know... it is what it is but I NEVER thought there is a human who takes antibiotics for longer than 10 days) of Amoxicillin. Has anybody used it and had success with it? To me this medication sounds so baby-like and innocent (isn't it a drug of choice for ear infections among infants?!) Our doctor thinks it is better to start low and slow and if Amoxicillin does not work - then we would move to something more potent. Any thoughts? P.S. He's also been put on Nystatin to control his yeast which is out of this world because of antibiotics, even though he's been on probiotics... Thank you! Lena

Kelly is fabulous. We have been with her for nearly a year now and I can credit her with all the progress that our 3.5 yr old made. She was THE one who suspected PANDAS just based on symptoms I described. She then asked our DAN! to run blood work to check on strep titers and you better believe it - those came back sky high! We have never seen her (we're in different states) but just do phone consults about every other month (just got off the phone with her now!) I would LOVE to see/ hear her if she's ever in our area (Pennsylvania). So - if anybody is looking for a cutting-edge nutritionist (with knowledge above and beyond) - she is it and VERY reasonably priced! P.S. By the way, hello to the group! I'm Lena, mom to a newly diagnosed little Pandas bear ) Our son is 3.5 and has been suffering with "medical mystery" symptoms for about a year. Until the recent diagnosis... *deep sigh*