beeskneesmommy

Deedee - curious - did you see an immediate change in the PANDAS symptoms after tonsillectomy? My son had one last Aug., which is in part what brought his acute episode fourth (because he had active Strep during the surgery and the ENT did not give him abx prior). My son's titers stayed very high well after the tonsillectomy, despite starting on Augmentin last Sept. His titers are finally down, as we started a new abx in Jan. 2011. It is my hope that he will be one of the lucky ones who shakes this after a tonsillectomy. However, he recently had a surge of PANDAS symptoms (despite low titers now) and we don't know what to make of it. Interestingly enough, we seem to have knocked those symptoms clear out with a typical 5 day run of Azith. on top of the Cefdinir. It's like night and day now, compared to last Sunday. I am wondering if you had some bumps in the road or if your kiddo just became asymptomatic during the recovery from the surgery...? Thanks, Kath

I do not think that any of us wants to pump our children with abx, or any other meds for that matter! However, I am thankful that we have something that actually works for some of our kids. My son is a classic Strep:PANDAS kiddo. No other health concerns prior to the onset of this disorder. When he had his acute episode last Sept. (which, FYI, was brought on in a speedier and more disastrous manner after a tonsillectomy while infected with active Strep) I am thankful that I was able to turn to something for help. I got him on Augmentin thru his Ped. even prior to getting him to the specialist 5 days later. If we had gotten him on an abx regime at the start of his PANDAS symptoms (almost 2 years earlier) perhaps we could have circumvented the roller coaster that is our lives now. Lynne, I wish you well and I am rooting for you guys!!

Well, if we did not have abx, my son would be lost to us. I truly know in my heart of hearts that this is what has saved him and is continuing to save him. I does hurt the flora, but this can be regulated and one has to choose which is the more important piece to treat.

Looks good - wish my son's doc had been so thorough. Hang in there! I know how hard it is. There isn't anything that we all wouldn't do for our beautiful babies and, you know, you are doing it!

Vickie - I have been thinking sinus infection for months, especially with the response to Azith. x 3. It always comes back after a while, however. Makes me wonder if there isn't some sort of chronic bacterial illness that is causing these sinus probs. NO pediatrician will even consider anything but allergies (that seems to be their answer to everything). So, do we need to seek out an MRI? We are seeing Dr. Bouboulis in late July, specifically for his expertise in PANDAS and related allergy issues, as my son's blood and scratch allergy tests came back inconsistent and, well, looking crazy with no response to the histamine control (scratch). Thank you, everyone, for your ideas. Sometimes I feel like I am in my own little manic state because my brain never stops trying to figure it all out! Anyone for up for a day at the beach with pina coladas? ...Hah.

We went thru 10 docs, including a neuropsych at Duke children's, NC. NONE of them understood the PANDAS mechanism. Rather, they kept treating the Strep Throat with 10 day runs on abx, noting that that the Strep and neuropsychiatric symptoms disappeared after each run of abx, CONFIRMING that it was PANDAS, and sending us away!! LUDICROUS!! As a result of negligence and arrogance combined, my little boy, just after his 4th birthday, had a massive acute episode last September. His little body and brain had simply had enough after 10 documented cases of Strep + PANDAS in 1.5 years. Now, (I believe) because we did not get the help that we needed, we are battling a long, scary, hard recovery. Thank GOD I was finally able to get help for him with a PANDAS specialist. That is the only route to go with this because most pediatricians just don't get it! Good luck and rush to a specialist! Kath

My 4 yr. old son has had significantly elevated Strep titers thru several blood draws starting 6/10, then 9/10, then 1/11, despite having his tonsils out last 8/10 and having no Strep + cultures thereafter. He started Cefdinir 1/11 in place of the Augmentin that he had been taking daily since last Fall, and did very well for almost 3 months, with extreme reduction or, most of the time absence of PANDAS symptomology. In May, his PANDAS symptoms returned with the typical roller coaster, but the symptoms were more acute than I have seen them in many months - reminiscent of last Fall when he had his acute episode. I felt sure that his titers would be elevated when we drew blood 2 weeks ago, but they are WAY down; ASO normal and Anti-Dnase only slightly elevated. Hmmmm. So, last Fri. we went into his doc at CHOP and asked for Azith. She won't give it to him as a prophylaxis, but was willing to give him a typical 5 day dose. I made sure that the 1st (Sun. night) was a loading dose (double) and have been giving it to him since. He is getting this on top of his Cefdinir. He has dramatically improved, from being an absolute mess over the weekend to being completely normal with full absence of PANDAS symptoms today. Now, my kiddos titers are normal, but the abx is successful, leading me to believe that the PANDAS response was a reaction to A.) another bacteria or virus or B.) hidden Strep. BUT, the titers are a measurement to the body's reaction to the presence of Strep. Therefor, if the titers are normal, the body is not having an adverse reaction to Strep, so even if it is hidden in there, it may not be the cause of the current PANDAS response....????right???? In addition, the "allergies" that he has been suffering with round the clock have disappeared. This pattern also happened the last time he took Azith. last Nov. Any ideas? Can someone help me wrap my head around all of this?

Same happened with my son - about 10 documented Strep infections followed by abx, resulting in absence of PANDAS symptoms that had appeared with the Strep. Started with Amox., which then became ineffective. Augmentin worked when Amox. failed. However, if Amox. has not failed you, not sure why he is starting Augmentin. Question: what are the blood tests? 10 days after abx & Strep infection is too soon to see a significant titer decrease. There are no blood tests for PANDAS. What is he looking for specifically in his choice to do a blood draw after a 10 days of Augmentin ...or am I reading this incorrectly?

Philamom, are you speaking of our doctor when you say this?

Peglem - doc is concerned about causing liver damage, although my son is (aside from PANDAS) very physically healthy with no other concerns and the PANDAS is classic Strep related...

I think that's the theory, as reg. Augmentin has a shorter half life. I was leaning toward asking for the XR as well. I think it's fair to say that my son "plateaud", rather than "backslid" by last Christmas, because there was extreme improvement from the acute episode in Sept. on Augmentin - he was very, very symptomatic at the start and up and down for 8 weeks following the acute episode. I wish that we could get Azith because he took it for pneumonia last Oct. on top of the Augmentin (just the 5 day run) and I am sure that is what pushed him forward. When he had trouble again, we did it again about 1 month later, justifying it with a sinus infection. The same excellent result occurred, but did not last as it was just the typical 5 day run. The doc is concerned about liver damage. She is excellent, but conservative. We are seeing another doc (Bouboulis) at the end of July, but I don't want my son to "backslide" tremendously in the meantime, putting us back to square 1. I think his CHOP doc would agree to XR or another ABX, but not Azith. Perhaps it is against current protocol at CHOP. Your experience of 2 years of success with your kiddo is impressive and exciting! Do you mind my asking how old he/she is? I am trying to match age with choice of ABX and I want to have all of my ducks in a row when I meet with the doc. Thank you!

Hi: My 4 year old son had an acute episode last Sept. He responded to Augmentin, looked pretty good (after the initial 1st 8 wks) for a couple of months, then went down hill around Dec. Mid Jan., we started Cefdinir and it was like magic - he responded very well and had a long period of normalcy from about the end of Jan. to mid March. He was exposed to tons of bugs at preschool and unfortunately had bouts of PANDAS symptoms with various viruses. However, he bounced back pretty quickly after each one. But, at the start of May, he was exposed to Strep and although his titers do not show that he had it and they are, in fact down significantly, the whole month of May and up to the present has been pretty bad since he had a fever and sore throat on 5/6. He had an unusual sudden onset of PANDAS symptoms at the end of a great day last Sat. (literally came on in a matter of an hour), and he can't seem to recover. This looks more like a mini version of the acute episode that he had last Sept. Anyway, we will be going to CHOP and I feel strongly that we need to switch up the ABX....to what? I have heard that Augmentin XR works better than the regular Augmentin, but the regular Augmentin clearly lost its effectiveness last Dec. His doc will not prescribe Azith. Please give me suggestions of what has worked for you, especially if you have a kiddo close to age 4-5. He is too young for a steroid burst, I think, and ABX may give us longer run of health. Thank you! -Kath

My son is only 4. However, he's a smart and advanced 4 when he is not regressed. Even when he is regressed from neuro symptoms, I think he should still get the message that bad behavior is not OK. I use a token system (poker chips) and give him lots of opportunity throughout the day to earn his chips (getting dressed, teeth brushed, off to school without problems, etc). When he reached 25 chips, he gets to go to the dollar store and pick something out. It makes him feel empowered and he digs shopping. On the other hand, when he behaves badly, oh boy, it's something! I have problems staying calm because I am so burnt out & stressed, but I try. I take away privileges. Usually, this is a toy he loves or TV. I try to make it happen immediately and allow him to earn it back. I think that, due to the nature of PANDAS exacerbation, he responds better to simple, quick punishment and it helps him to turn his behavior around if he can work to earn it back within a day, or even hours. I do not think that it works or is productive to tell him that he will lose a privilege to something happening too far in advance, as the nature of the impulsiveness also effects kids with PANDAS' ability to plan for the future. I feel that these kiddos are going to suffer from self esteem issues simply due to the nature of their illness and having others being irritated with them so often. Giving them a chance to make it up afterward is important for their overall and continued development. That being said, I'm glad my son is in bed because he bit another kid today at a play date, the punishment and discussion is over, but I am exhausted :>

Hi: How about Denver? We lived there for 10 years and it's a relatively close major city and there are PANDAS docs there as well as excellent teaching hospitals (U of CO). Believe me, when all of this hit us hard, we wished we were still there and not in the Raleigh-Durham area! I understand the rages and how incredibly hard they are to deal with...along with the guilt when I didn't deal with them as well as I would have liked. Try to remember that being inside his head right now is very confusing and very difficult. My son is also 4 and has had a diagnosis of PANDAS for 2 years. I cannot vouch for either of these CO docs (below) as I do not know them. They were referrals that came from Beth Maloney (Saving Sammy). I will say that I have had a teleconference with Dr. K and it is very worthwhile. It is important to note that if this IS PANDAS, time is of the essence. Catching it early and getting abx on board is key to increasing chances of recovery. It may very well be worth it to go to Il. ASAP. In the mean time, it's worth the out of pocket expense to get a call scheduled with Dr. K, so you at least have some direction. In addition, how about another Strep culture at the Ped.? My son had Strep living in his tonsils that often recurred 2-3 weeks after finishing the antibiotics from the previous Strep...and on and on. If he is Strep+, ask for Augmentin rather than Ammox. I don't know what you had him on, but Ammox. is the 1st line of treatment for Strep in kids, but it is known to fail in treating for Strep in some kids. In addition, when they take the swab for the rapid Strep test, make sure that you ask them to culture it. My son occasionally would come up neg. on the rapid and then I would get a call call 24 hours later telling me that the culture came back +. COLORADO Kytja K.S. Voeller, M.D. Director Western Institute for Neurodevelopmental Studies and Interventions (WINSi) 2501 Walnut Street Ste 102 Boulder CO 80302 Thomas J. Smith, MD Arapahoe Park Medical Plaza Bldg I Suite 110 Littleton, CO 303) 832-2462

OK, please bear with me. My son's Immunoglobulin E was 185.9. in the blood test. The Ped. did say that because of a high reading (I am thinking this one??), he wanted us to do the scratch test to r/o false responses. So this is why I started this thread - the readings for the scratch rests were mostly extreme opposites, or went from very high (dustmites) in the blood, to very low for the scratch. I am trying to get more succinct info - perhaps there isn't any out there yet. Seems that Dr. T. (Triffeleti??) is thinking that kids with PANDAS can have abnormal levels of histamine, either high or low? Also, this study or lit. re: histamine and Tourette's that someone mentioned - do you have a name or a link for this study so I can refer to it? Thank you!! -Kath

Yay! I have the same - a compassionate Ped. who wants to help but admits he just doesn't know enough to do much. It's really good to have him on board though - he doesn't send me away shaking his head or look at me like I am crazy! Augmentin is a great place to start - it pulled my little boy out of a pretty bad place last Fall. If you have not read "Saving Sammy", by Beth Maloney, you might want to get it. If I had not read that book, I would have been much less prepared for Brooks' acute episode last Fall. As it was, I was able to email Beth, the author, who got back to me very quickly and provided me with tons of referrals around the counry. I was able to get in with CHOP and get initial help from a specialist within 5 days of his onset, which happened just before a weekend. I hope that you are able to find a PANDAS specialist within a relatively decent distance from your home. My thoughts are with you and best on this difficult journey. You are NOT alone! Kath

Does she have tonsils still? It's a good place to start with the "hiding", but not always the only place (as we well know)! When you get the culture, watch and make sure whomever does it does a good strong swipe! Basically, my son had Strep throughout a large part of his life (4 now) and it just kind of receded when he was given abx, only to resurface rapidly because it was never really gone...

Hi: I keep seeing that 1 lab is better than another, that Igenex is the best. etc. We are heading up to CHOP again next week for our 6 week check in. I want to ask for Bartonella testing, and I want to bring up the fact that my son has tested neg. x 2 since Sept. for Lyme. I have been told that with poor testing there can be false negs for Lyme. He also showed an "old" Mycoplasma infection (likely from pneumonia that he had last Oct.). Is this something that should be addressed at this stage with abx or is it benign in that it is just showing that he had Mycoplasm in the past. I also want to ask about a change in abx. He is currently on Cefdinir (Omnicef) and has been on Augmentin. The Cefdinir seems to have pushed him further, faster, toward recovery, but I feel that it is starting to wane in its effectiveness. Throw into the mix that his ASO is 105 and his Anti Dnase is 159 now, after consistently being very high,(both for several test through last Jan). I guess this is good news, but I do not want it to make the doc think he should go off abx. He went off for 2.5 days in May due to diarrhea, and I saw alarming PANDAS symptoms return. Please give me some clear guidance so I can communicate effectively with the CHOP doc. If that doesn't work, we are also seeing Dr. Bouboulis for the first time in late July. However, I do not want to do nothing with treatment during the interim. Thank you for your help! -Kath

Lisa - hang in there! We are likely heading in the direction of IVig, but have not been there yet. I just felt the need to respond because I know the deep worried feeling and despair that comes with your child being ill with PANDAS. Maybe you can get in with the doc and have a discussion about what's going on? I will send positive thoughts your way!

My son, who has PANDAS and had many Strep Throat infections prior to having his tonsils out last Aug., would have this waxing and waning low grade fever often, with few or no other symptoms. It was typical that docs would brush it off, but when I insisted upon a Strep culture, it would almost always return as positive. Are you getting your child cultured or does your kiddo have other infections/illness driving the PANDAS? In addition, it turned out that it may very well have been unresolved Strep infections, as his tonsil apparently had lots of crevices in which the Strep "hid", basically causing him to have constant Strep for years that changed its strength, but never left him.

Hi: My 4 yr. old son had a blood test come back showing extreme allergy to dogs and dustmites, and minor allergy to cats last week. Today, he went in for a scratch test which showed NO allergy to dogs, minor allergy to dustmites and extreme allergy to cats. The really weird part is that he didn't react at all to the CONTROL, which was histamine! The docs and nurses were all scratching their heads on that one. Am I crazy and grasping at straws when I ask: is it possible that, given that his antibodies obviously behave differently to invaders like Strep/virus, that perhaps his antibodies are behaving differently to common allergens? Trying to get to the bottom of the allergies because I think that maybe the allergies are impeding his recovery from the PANDAS. Any ideas or experience like this? Thanks!

Hi again: New info - Dr. Layton does not treat PANDAS. Apparently, he wrote the case study up with the thought in mind, but is not a specialist. Sorry about barking up the wrong tree. However, I will be pursuing the poss. link betw. allergies and PANDAS (I do not believe that it s complete cause for my son, as he is classic Strep - PANDAS, but I am starting to believe that his allergies are impeding his recovery from PANDAS - another "layer".

I found this Site while skimming and PLEASE NOTE: I have no idea about this doc's viability in treating PANDAS. Home page: http://www.allergyconnection.com/laytonaboutfr.html I was wondering if anyone has heard of him because he makes some compelling points in his writing of a case study in the following link: http://www.allergyconnection.com/patients/gp.html If anyone has any feedback, please let me know. My son seems to have some significant allergies and I believe that there is a connection between his slowed recovery of PANDAS and the underlying layer of allergies in addition to his (original) classic Strep/PANDAS connection. Thanks!

Thank you - I know that it can "hide out" in the intestinal tract and rectal area, neither of which we have tested yet - I guess I thought that if it was "hiding out" we would be able to detect it with titers. I guess it's good news that the titers are decreased (dramatically!), but it also feel more confusing to me. Chop doc had suggested that take him off Cefdinir over the summer, but after taking him off for 2.5 days and seeing the dramatic onset, I fear that plan! Since he was doing great and now is a little more up/down, I wonder if we shouldn't try another ABX. I think one of the hardest areas for me is that he has had PANDAS shaping his personality and behavior for over half of his little life. I see occasional glimpses (sometime even a week long) of the laughing, cooperative, happy child that I know he is, in between bouts of OCD, extreme irritability and other difficult symptoms. I sometimes wonder, is this who he is now? What is pathology and what isn't? Am I pathologizing typical behavior for a 4 year old sometimes? It's very hard to sift thru it all!