beeskneesmommy

Thank you KaraM. He just tested + for dog and dustmite allergies, and a a lower level of cat (we have all of those pets :>. Also, he tested with "old" Mycoplasm. After his acute episode of PANDAS last Sept., he had walking pneumonia the following Oct. He took Azith in addition to the Augmentin and the PANDAS cleared better than I had seen it in months. Of course, it was up/down and continues to be, however, overall, in the big pic, he seems to be improving slowly over time. He has been tested for Lyme x 2, but never Bartonella. Thank you for the suggestions! I will have more on my list when we go to CHOP. Incidentally, we are traveling to see Dr. Bouboulis in late July. I think that's who you refer to as Dr. B? Would you recommend him? Is he extremely conservative, or seemingly willing to roll with more aggressive TX (IVig/PEX) even if Strep titers are low now? Thanks for you help -Kath

Thank you Buster. My son was dx with PANDAS at age 2.5, in May, 2009. It is my belief that he had multiple undiagnosed incidents of Strep and PANDAS responses prior to that time. Betw. May 2009 and last Aug., 2010, he had 7 documented pos. Strep cultures, followed by 10 day runs of abx. The Strep was never that evident as the fever and sore throat were often not really bad. However, the sudden onset of bx changes and classic PANDAS symptoms would lead me to the Ped. for the Strep cultures. He was on Ammoxil for 4 of the Strep infections. It was effective for the 1st 2 but did not work well for the 3rd and 4th, as the Strep and symptoms came back within 10-20 days of the the end of the Ammoxil run. Next 2 Strep infections were followed by Cephelexin. This was effective for the first but not as effective for the 2nd, and it came back within 10 days of the end of that run (same as before). Augmentin was used in between the 1st and 3rd documented Strep, mostly due to my request because it came in chewable tablets. This was the antibiotic that seemed to work the best. In Aug. 2010, he had his tonsils and adenoids removed, while infected with Strep, despite my verbalized concerns and request for an antibiotic pre-surgery (doc wouldn't give him one). He was on Cefdinir for 10 days post surgery and then a low dose of Ammoxil daily thereafter, until his acute episode. Within 2 days post surgery, it was evident that more severe PANDAS symptoms were emerging. After 3 weeks he had an overnight acute episode in which he fell apart and was highly symptomatic. I requested Augmentin from his Ped., 600 BID. We got to a specialist at CHOP within another 5 days and she chose to keep him on the Augmentin. He recovered very slowly. All relative but it took about 2 months of roller coaster riding to improve the severe symptoms, then he kind of coasted on a smaller roller coaster with less severe symptoms and occasional runs of days with very little symptomology until Jan. 2011. At that time, his titers showed that the DNASE was higher than it had ever been. We switched to Cefdinir which acted as a magic bullet for about 2.5 months. He was practically asymptomatic, with some slightly difficult days sprinkled in. Starting last April, 2011, he had increased incidents of PANDAS symptoms again, although he was in preschool at the worst time and exposed to multiple viral infections. He recently got sick May 7th, after being exposed to another kiddo for 2 days who was infected with Strep. Culture came back neg., but was done 8 days after the onset due to us being out of town during his illness. Of course, now the titers are way down from last Jan. However, the PANDAS response that he had with this illness was eerily reminiscent of last Fall during his acute episode, although not as severe and now he has bounced back again. Some current hyperactivity and intermittent manageable OCD. It is important to note that about 3 weeks ago I D/Cd the Cefdinir for 2.5 days due to severe stomach problems and that is when the worst of the PANDAS response occurred. After starting again, the symptoms gradually got better. We are going back to CHOP in a week. I am thinking maybe we should try a new antibiotic. The doc will not give us Azithromax. Any suggestions? We are also seeing Dr. Bouboulis in CT in late July for a 2nd opinion. Sorry for the incredibly lengthy note - I guess I feel somewhat "compelled" to make sure I am an accurate reporter and to provide all necessary info in case something jumps out at you, or someone else, and an opportunity for new info may be provided. Nutshell: Ammoxil, Ammoxil, Augmentin, Ammoxil, Ammoxil, Cephelexen, Cephelexen, Cefdinir (post surgery), Low dose Ammoxil, Augmentin (BID 9/10-1/11), Cefdinir (BID 1/11-present). Thank you, Kath

Hi: I need some help understanding this. Since last June, my son (4) has had ASO of 400+ and DNASE in high 900's. He had Strep titers tested June 2010, Sept. 2010, Jan. 2011 and last week, May 2011. He started BID antibiotics last Sept. 2010, which did not seem to make a dent in the titers, in fact, his last DNASE, last Jan., actually went up. Sooo, now, about 4.5 months later, his titers are ASO 105 and DNASE 159. I am not looking a gift horse in the mouth. It is true that his PANDAS symptoms were almost non-existent from last Jan - the end of last March, likely due to starting a diff. ABX called Cefdinir. However, recently I have noticed that some of the symptoms, especially during an illness in the beginning of May, were returning. The most recent symptoms were accompanied by a fever and sore throat and I felt sure from my observation of his behavior that he had Strep. Throat culture was neg., and apparently correct if you go my the titers. Can anyone shed some light upon PANDAS symptoms seeming to return even thought titers have decreased significantly?

Hi: I have thought about testing our dog - do you just ask the vet to test for Strep or are there other specific key words I should use in addressing this with the vet? I know they will be OK about it because my son's 1st acute episode kicked off at the vets. I have often made the observation that whenever we go to the vet, my son's PANDAS response is exacerbated and lasts for the rest of the day (at the very least). I have never been able to wrap my brain around this. Any thoughts? I wondered if it could be environmental chemicals, etc. However, he just tested as allergic to dogs. Maybe the concentration of animals in 1 place sets off allergies, thus setting off PANDAS symptoms? Is it possible that Strep is higher at the vets d/t the dog population? Hope I don't sound like a nut - just trying to figure it out...

It was blood test that the doc added when we drew last Tues. for Strep titers. There is no doubt that he is allergic to something - has been for a long time - but our last dog dies when he was 12 months and we got the new dog when he turned 4. He has always presented with waxing and waning congestion, itchy nose and sneezing. I assume he has seasonal pollen allergies, but he also has periods of time in which he has symptoms (Jan.) when that doesn't make sense, and then he has periods symptom free for several weeks (despite living with the dog). He also came up allergic to dust mites (what he heck do I do about that)? and cats (we have a Siamese, but the allergy is quite low on the scale in comparison to the dog results. I am at a loss and I really don't want to get rid of any pets until we are sure this will have a serious impact upon his PANDAS recovery. In addition, he cannot take ANY meds because he tends to have a PANDAS response, even to low doses of Allegra, which apparently is not supposed top cross the blood brain barrier...

I believe that there is always hope and that there will never be a time to give up. When my son was dx at 2.5, I plugged along, trying to get help. Many, many medical professionals let us down. When my son had a major acute episode 4 days after his 4th birthday, I kicked into high gear, using all that I had, to get help for him. I made a promise to the world, to God, to my son, that he would be cured. I insist that there is simply no other option. I tell this to his specialist at CHOP and she hears me. I get discouraged, I cry, I feel terribly isolated at times. But my son, overall, in 8 months is getting better on antibiotics alone. 2 steps forward and 1 step back, but definitely better. In order to have complete recovery, we may have to have IVig or PEX, However, he is making it. Each week I uncover another layer of what may be inhibiting full recovery. Yesterday, it was the discovery that he has a strong allergy to the family dog, who arrived 2 days prior to the acute episode, but many months after many Strep/PANDAS episodes. I had a consult a couple of months ago with Dr. Kovacevic (Dr. K, Il.) who said: I FEEL THAT THIS IS ABSOLUTELY PANDAS, BECAUSE NO OTHER DISEASE BEHAVES LIKE THIS. Please, don't give up. Please remember that there will be naysayers and doctors who will inadvertently betray your sense of what is, but there will never be a time to give up.

Thank you! We are in NC, but we travel to Philly and in July will be traveling to CT to see Dr. Bouboulis. Any recommendations across those grounds?

How cool! Is this something a chiropractor usually addresses or is this something I should bring to an allergy Dr.? Is it considered alternative medicine and do you know what the "red light" was? Thank you!

Hi: My son has pretty classic PANDAS in that he had Strep in conjunction with PANDAS symptoms many, many times prior to getting his tonsils removed last Aug. When we first went for help at CHOP last Sept., his Strep titers were very high but he tested neg. for Mycoplasma and Lyme. About 1 month after these tests, he had a tight chest and difficulty breathing. The Ped. gave him a nebulizer and said that he looked like he had "a touch of walking pneumonia". This week, he had titers taken again and I requested that they test for Mycoplasma/Lyme again. The report from the nurse was that he tested pos. for Mycoplasma "but it looked like it was a long time ago". SO, would this be impactful upon his PANDAS at this point in addition to the Strep still circulating in his system? He has had steady but 2 steps forward/1 step back improvement since being on antibiotics BID since last Sept. He is currently on Cefdinir. I took him off for 2.5 days last week because he had a really bad stomach bug. I could see a major PANDAS response pretty quickly, remeniscent of some of the acute symptoms from last Sept. He is improving once more now that the abx are back on board. What is the front line abx for micoplasma? I appreciate any ideas/suggestions. I am a little shocked at the idea of yet another addition to the brew! Thanks!

Well, we got a new puppy last Fall with the feeling that a collie would be a great companion for our 4 year old son. I just got word from the doc that my son is allergic to his beloved pet (among others, less, but still allergic to the cat and to dust mites). I have heard that PANDAS can be greatly exacerbated by allergies. Any input on this? He has been getting better for months (2 steps forward 1 step back)on antibiotics, and he is unable to take allergy meds because they seem to exacerbate PANDAS symptoms. Help! It pains me to take yet another thing away from this little boy! -Kath

Interesting!

Thanks, and yes, it will. Luckily, although he had been dx at 2.5 years old, he has only experienced one acute episode, I knew what it was and got Augmentin on board immediately. It took several roller coaster months, but we got the symptoms under control. He is currently on Cefdinir which is working very well. I believe that although the docs were remiss in treating the PANDAS, and only treated the Strep from age 2.5-4, we might have lessened the PANDAS impact because each time he had Strep I could tell immediately from some behaviors and tics, and I would rush him in for a Strep test and he would at least get the 10 day run of antibiotics. He had his tonsils out last Aug., which was heinous and likely brought on the acute episode, but we went after the PANDAS immediately. For many months, he has been steady to a point in which no one would be able to tell there was anything wrong unless I told them. I am hoping that he will be one of the lucky ones who "grows out of it". Perhaps I sound naive, but I am not. Only extremely hopeful and unwilling to allow this enemy to take my son. So, although realistically there will be challenges with an infant, I am hoping that they will not be hurdles that I cannot jump. Best to you and yours, Kath

Yes, I figured as much. We were thinking of banking our son's cord blood but practically every doc I spoke to told me not to bother - "waste of $$". Their thought process was that the odds of having any problems and needing it were slim. A little over 2 yrs. ago, when my son was 1st diagnosed, I was much more concerned than any of his pediatricians - was even blown off by a nueropsychiatrist at Duke, NC. At that time, I was unable to find much on the Net at all. 6 months later, the links grew and now 2 years later, it's all over and most pediatricians have at least heard of PANDAS. My hope is, that if,(God forbid) this is still an issue for my son 10 years from now, there will be a great deal of new research. I believe that there are many, many misdiagnosed kids out there and that PANDAS may be just as prevalent at Rheumatic Fever was, prior to the introduction of antibiotics. So, maybe 10 years from now, they will be doing something with cord blood - I wish we had banked my son's blood because now I kind of live my life waiting for the other shoe to drop. Despite the lack of research, I think, if we are able to manage another one, we will go ahead with banking it. Thank you for your responses.

Hello: We had been trying to have another baby when all H broke loose with my 4 yr. old son having an acute episode last Sept. For obvious reasons, we put it all on hold. Our son has his ups and downs, but seems to be somewhat stabilized re: the really frightening symptomology. It has been 8 months since that episode and although we have had some scares, and he is not consistently behaving "normally", he is managing mainstream and doing OK. Here's the clincher and please do not judge us - rather, please give us your understanding and knowledge when I ask: does anyone know anything about cord blood from a sibling, being used to assist the recovery of another sibling, specifically targeting PANDAS? If we choose to go ahead with another child, we are are wondering if cord blood might help our son with PANDAS diagnosis. Thank you, K

I just made an appt. with Dr. Bouboulis today. He is seeing us in late July. I am so glad for this forum and to find so many others that have information to pass along. Thank you.

Stephanie - thank you - this is the type of info that I have been looking for as I want to integrate traditional & alt. medicine. Testing D levels and the addition of Oscillium and Omega gummy bears has been recommended in his treatment thus far, but that is it. I know there is more out there but I have not known where to start and I do not feel safe walking into Whole Foods for advice! Clearly, I need to get more aggressive in seeking a team, rather than a primary with occasional other consults. Wish I knew about this forum a long time ago. My son has had PANDAS for over 2 years and I just found ACN!

Since I wrote about Dr. Elia, I have read posts from parents who have not been happy with her care. I advocate that you educate yourself re: diff. docs, as they have diff. schools of thought re: treatment. I certainly do not have tunnel vision and I have sought other docs for other ideas as well, in conjunction with Dr. Elia being primary specialist at this time. I will continue to do so, although for the stage in which we are currently. Dr. Elia is working with us well. Good luck!

It seems to me that the worse of the 2 scenarios would be to have the PANDAS symptoms persist and debilitate my child. If my son has to stay back for a school year, so be it, as long as he is healthy and happy. Re: Dr. K, I have had a 1/2 hour teleconference that was extremely informative. My son is "classic" PANDAS (multiple cases of confirmed Strep over the 2nd half of his little life - age 4 now). Dr. K was conservative in that he does not want to do the IVig until my son turns 5 (poss. for stats as well, but that's OK), but he does feel that my son has to have IVig. I specifically questioned him re: "cure" vs. treatment with temporary results. He was very insistent that IVig was a "cure", and his stats suggest that younger patients benefit more effectively than older ones, making my son a great candidate. He did say that 12% of patients have to return for a second run of IVig. I think it is important to note that the populous sample that he uses for his stats are ALL his own patients, and that the data may be somewhat skewed by this. However, there is no question in my mind that there is extremely strong anecdotal evidence of Dr. K's success in PANDAS treatment. Incidentally, we see a very conservative doc at CHOP, Josephine Elia. She advocates PEX, for which my son is not a good candidate due to an "exit" vein that is too small. She advised me to contact Dr. K and have a teleconference with him, as she stated that he is the "expert" on IVig. Good luck and thank you for all of your posts. We will not be seeking the NIMH study because I don't want to risk a placebo on the first try. Many, many positive thoughts to you and your family!

It seems to me that the worse of the 2 scenarios would be to have the PANDAS symptoms persist and debilitate my child. If my son has to stay back for a school year, so be it, as long as he is healthy and happy. Re: Dr. K, I have had a 1/2 hour teleconference that was extremely informative. My son is "classic" PANDAS (multiple cases of confirmed Strep over the 2nd half of his little life - age 4 now). Dr. K was conservative in that he does not want to do the IVig until my son turns 5 (poss. for stats as well, but that's OK), but he does feel that my son has to have IVig. I specifically questioned him re: "cure" vs. treatment with temporary results. He was very insistent that IVig was a "cure", and his stats suggest that younger patients benefit more effectively than older ones, making my son a great candidate. He did say that 12% of patients have to return for a second run of IVig. I think it is important to note that the populous sample that he uses for his stats are ALL his own patients, and that the data may be somewhat skewed by this. However, there is no question in my mind that there is extremely strong anecdotal evidence of Dr. K's success in PANDAS treatment. Incidentally, we see a very conservative doc at CHOP, Josephine Elia. She advocates PEX, for which my son is not a good candidate due to an "exit" vein that is too small. She advised me to contact Dr. K and have a teleconference with him, as she stated that he is the "expert" on IVig. Good luck and thank you for all of your posts. We will not be seeking the NIMH study because I don't want to risk a placebo on the first try. Many, many positive thoughts to you and your family!

I would have to agree that it would likely not make a big diff. if we knew of Strep being present on the tonsils post surgery. However, given our experience, it is now my understanding that the Strep can colonize and hit the blood stream when infected tonsils are removed. We think this is what happened with our son. That is why I advocate strongly for a run of strong antibiotics prior to and post surgery...

My son had a tonsillectomy/adenoidectomy 3 weeks prior to his 4th birthday last Sept. He had been DX with PANDAS since the age of 2.5, but the docs never really took it seriously - rather, they didn't treat the PANDAS, only the recurring Strep with 10 day runs of antibiotics. I did not know last year that PANDAS could look worse that what I had already seen - BX issues, hyperactivity and occasional tics caused by Strep and eradicated by the antibiotics each time. I was told that if his tonsils were removed, the PANDAS would disappear because he would no longer get Strep. I knew that he had Strep prior to the surgery. I asked his ped x 2 for antibiotics to get rid of the Strep, as I was worried about the surgery with active Strep. He referred me to the ENT who told me that it was not necessary. All ###### broke loose. Within 1 day, I could see my son going downhill with PANDAS symptoms. Within 2 days he was worse than I had ever seen and had severe terrors in which he could not "wake up". He recovered from the surgery, but looked very shaky and unnatural for the couple of weeks post surgery. I requested Augmentin as a prophylaxis after the 10 day post surgery Omnicef run, but his ped. refused, giving him only a small dose of Amox. Within 3 weeks after his surgery, he had a severe acute episode, arriving with a vengence over night. This was a healthy, normal kid who functioned quite well when uninfected with Strep. Over night, he turned into a kiddo who looked like he had severe autism, rocking, chorea, vacant staring, bizarre hand and finger movements, inability to communicate well, intrusive thoughts, severe facial and vocal tics, etc. Bottom line: My son has recovered significantly from the PANDAS, but not fully. He no longer has noticeable physical symptoms, but the OCD and intrusive thinking is intermittently present along with intermittent hyperactivity. He has been on antibiotics almost daily since last Sept., when he started treatment with a specialist for PANDAS. She seems to think that the surgery had something to do with the acute episode as well. I am glad that he had the surgery, and although he has had his ups and downs, after his recovery from the severe symptoms he has not had them return. Although he has not had a documented case of Strep Throat (has had a few cultures d/t my running to his ped. every time he gets sick), HIS TITERS HAVE ELEVATED since the surgery. He has been on ABX daily, since last August, so I am not sure what to make of that. Word of BIG caution: Do NOT do the surgery unless his docs are willing to give him the ABX prior, to kill any Strep in there!! Best wishes, good luck - sorry I sound like a zealot - I guess this thread really struck a cord with me

Wow - I just read all of these posts. We have been seeing Dr. Elia for 8 months. My son has been on Augmentin (I had our pediatrician put him on a therapeutic dose, even before getting to CHOP). Dr. Elia kept him on that dose. His severe symptoms decreased after his acute episode last Sept., (the one that prompted me to take him to CHOP), but he never fully recovered. When we saw Dr. Elia in Jan., his titers were up a little higher instead of decreasing as expected. She switched him to Cefdinir and it was like a miracle....for a couple of months. However, over that past 2 of months he seems to be having more and more of the wax/wane symptoms, rather than the "miracle" steady health that he had in Feb./March. I assumed that the next step would be IVig, as he is not a good candidate for PEX d/t undersized "exit" vein. I have spoken with Dr. K in Il., who thinks that my son will have another acute episode in the Fall and says that this would be the time to do IVig, as he will be turning 5 then. Last Fall, when my son was really sick, he also had pneumonia. His ped. gave him a 5 day run of Azith in addition to the Augmentin he was on. Not only did it clear the pneumonia, but it significantly made a dent in the PANDAS symptoms for a while. I asked Dr. Elia if she would consider a prophylactic dose of Azith and she did not want to. She is very concerned about liver problems as well as building up resistance, but I keep hearing of many kids on Azith - are their docs not as concerned? I also noticed that when I gave my son Ibuprofen, his symptoms decreased. Dr. Elia told me I had to stop, due to the possibility of liver damage as well. I definitely see that Dr. Elia is conservative and I have mixed feelings about it. We have been let down by the medical community over and over throughout this nightmare (my son was initially DX at age 2.5, but I went from ped to ped and even to a neuropsych at Duke who was grossly negligent in his flagrant lack of medical care with my son). I have been feeling like we have exhausted antibiotics at this point as my son, prior to getting his tonsils removed, did not eradicate Strep Throat with Cephelexin, Amox., Pennicillan. PLEASE help me with all of this - IS it OK to give Azith and who will treat my son with excellent medical care so we can beat this thing? We are in the Raleigh area of NC, but my folks are in the suburbs of Philly and we already travel there every 8 weeks to check in at CHOP. Any great docs for PANDAS who are less conservative but not necessarily mavericks between here and there? I have, from the start, been adamant that my son will be cured of PANDAS. There is absolutely NO alternative other than complete recovery for us. I will do whatever it takes to make it happen.

If you mean Dr. Josephine Elia, we see her. We feel that we are in good hands with her...

Hi: We see a specialist at Children's Hosp. of Phila. When we first went, I asked about steroids because I had heard that they worked well. She was very conservative about it and told me that in small children, steroids can cause psychotic symptoms (my son is 4). She said that she would likely hospitalize him if we did a trial because of this. We chose not to follow thru with that course and keep it for an ace in the hole, so to speak. I am so sorry that your kiddo had an adverse response, although it is my understanding that a course of steroids can have very good results... Best wishes!

My son was DX first at 2.5 years, although I believe in retrospect that he had PANDAS starting around 14-18 months. It's just that no peds ever tested for Strep at that age, even though he presented with fever/sore throat. After he was finally DX, SEVERAL pediatricians in our area (NC) seemed to have no idea how to proceed and although they agreed that he had PANDAS, they minimized it and never treated it! They just kept throwing antibiotics for 10 days at him whenever he tested Strep +, despite my continuous quest for more in depth treatment. I absolutely believe in my heart of hearts, that if they had not let us down with their ignorance and arrogance, that my son would be a healthier kid at this point, at 4.5 years old. That being said, I encourage you strongly to seek out a PANDAS SPECIALIST immediately. Pediatricians are great at what they do, but only a handful seem to have the understanding and medical knowledge necessary to diagnose & treat PANDAS. Your kiddo is young and you may be able to prevent this. A very small percentage of PANDAS patients can be treated with antibiotics alone and do not have further PANDAS symptoms. These kids are ALWAYS diagnosed and treated extremely early. Best wishes!