beeskneesmommy

It is my understanding that there are a decent number of kids who out grow it. However, it depends upon whether they have other diagnosis or if their PANDAS stands alone. It also depends upon whether they get treatment throughout the course of PANDAS in childhood as well as the severity and how well they respond to treatment. There are cases in which girls have their 1st period and the PANDAS completely disappears. As kids get older, their blood brain barriers tighten up, making it more difficult fot the anibodies to cross and attack. When they are little, their blood brain barriers are much more leaky. I am 47 now but as a child, I had high fevers (no rapid Strep tests back then) chronic tonsilitis and severe anxiety and OCD symptoms. Between age 12-14 I outgrew it to a great extent. I did not have tics. I think it is imperative that we treat our kids as if they may not outgrow it; very aggressively with PANDAS specialists on board throughout.

Thank you for your relpies - 'cognitive fog' is the phrase that I have been looking for for over a year!

By bad reactions, do you mean PANDAS symptoms?

OK, now I feel like I sound pretty crazy. However, I have noticed that each time we go swimming, my son seems to take a little (or a bigger)dive the following day. There have been 3 incidents with 3 different pools, one of which was his swim instructor's so I know she keeps the levels safe from germs. This has happened over the last 2 weeks since he started his new aggressive abx protocol from Dr. B. I would hope that any bacteria would be unable to cross into him with that much Augmentin and Azith daily! Could he be reacting to the chlorine iteself? I vaguely remembered reading something about this on this forum. Anyone want to justify my thought process or call me a nut?? -Kath

Interesting. My "classic" Stre:PANDAS son was just given a new abx protocol by Dr. B for 30 days that includes Augmentin and Azith, daily. I also just was informed that his labs came back with high Igg for myco, although we know that he had pneumonia last Oct., apparently they are of interest d/t their levels at this point. Yesterday and today I have noticed that he is coughing a little, even though he has been on the new abx protocol for a couple of weeks now. He doesn't seem to be sick and says he feels OK. Even at age 4, he is a pretty reliable reporter. Maybe I am grasping at straws when I feel like some puzzle pieces might be coming together....

I keep seeing this and it's not in the abbreviations. Please forgive my lack of knowledge of the terms used, but....

Thank you Kay's daughter! SO glad to know that you are well! My son, almost age 5 has been on Augmentin and then Omnicef for a year. Seems like his abx treatment has run a parallel to yours. I will definitely talk to his PANDAS docs about Biaxin. Thank you and enjoy your OCD-free life, dear girl! -Kath:)

Thank you Kay's daughter! SO glad to know that you are well! My son, almost age 5 has been on Augmentin and then Omnicef for a year. Seems like his abx treatment has run a parallel to yours. I will definitely talk to his PANDAS docs about Biaxin. Thank you and enjoy your OCD-free life, dear girl! -Kath:)

What is this and does it really work like IVig? I read about this on another forum. Anyone know the scoop?

Kay - am I understanding that your daughter is recovered? My son is currently on a new protocol from Dr. B in CT: Augmentin and Azith for 30 days. he prescribed this d/t my son's history prior to getting blodwork back. I just found out about the Myco because my son's other PANDAS doc from CHOP called and left a message with the info. Is Biaxin bactrim and is it more specific than Azith for the treatemtn of Myco? Thanks!

My son just had labs that say that Myco igg is quite elevated. He had pneumonia last Oct., after his acute PANDAS episode. He originally had classic Strep:PANDAS. He had been getting better steadily intil last May when he had a fever but Strep titers did not elevate. After this, his symptoms although intermittent, were more severe, remeniscent of last Fall during his most acute time. It makes sense that Myco is playing a role at this point. Anyone know what the treatment is of different from Azith and what the prognosis is as well? Thanks!

I talked to my son's PANDAS doc a few months ago about it - we were trying to have another baby when he got sick last Fall and we abandoned our mission for a 2nd kiddo d/t his PANDAS. However, the same thought had occurred to us after my son had been sick for a while. I was told that nothing is happenig in that area for PANDAS kids and that banking cord blood from a sibling now, will likely not help my son who is turning 5 in Sept. In other words, by the time research gets to that, if it does, my son wil be much older.

I can only say that in exhausting many efforts, we have IVig on the table for our particular situation. I want to be careful not to mislead anyone and that is why I did not mention the doc's name in this post. I think the fact that my son has no other diagnosis and is otherwise clear and healthy in all levels of functioning allows for less difficult judgement calls/choices. My son has also been observed in person multiple times over the past year as we have made trips there every couple of months at my insistence. Therfor, he has been observed looking healthy and "normal" as well as presenting with PANDAS symptoms on many different occasions for each. I cannot speak for CHOP's position regarding IVig for anyone other than ourselves....

Thanks Kim. I made a promise to myself and to the powers that be when my son was stricken so dramatically with his acute episode last Fall. I vowed that when we got thru it all I would make it my life's work to educate others and to help as many families as I can in the fight against PANDAS. I do what I can now, while still on the battle lines daily with my sweet little boy. When it is over, and it WILL be over, I will draw more organized and strategic lines of war on this illness. I also have always maintained that my son will be cured - not improved to what others decide that he and we can live with - but cured. This is what I belive for all of our children. Peace and hope and goodness to you and yours!

Dr. Dennis Bouboulis is located in CT and has offices in Darien and Stamford. He is a specialist in Asthma and Immunology. By "too late", he meant that the autoimmune system may be already rolling on its own like a little freight train - unable to turn itself around with abx alone. He confirmed what I already know - if just one of the 12 docs who saw my son during the first 6 months when he was diagnosed at age 2.5 had been on the ball and prescribed ongoing abx, we may have nailed this thing in its tracks. Amazingly, they all diagnosed my son with PANDAS but would not listen when I attempted to discuss the idea of treating the PANDAS rather than just the Strep each time he had a Strep:PANDAS flare-up. Thus the multiple docs - I kept going from one to the next in hope that someone would treat my kiddo!! Anyway, I digress with the anger that I cannot seem to let go of. Dr. B said that we would try the abx for 30 days. If we can't knock the PANDAS out this way, he will go for a steroid taper and ultimately to IVig. We are already prepared for IVig and my son's doc at CHOP has offered it to us. Re: tests - tons of tests for Lyme, Myco, Bartonella and more. Some were thru Quest (insurance will likely cover in part) and some were out of pocket and I sent the blood myself to Igenex. I will continue to share info as it comes in. Positive thoughts your way, all!!

My son (just turn 4 at the time) was put on Augmentin last Sept. This helped in his symptoms improve a lot but he plateaued around Christmas. He was then put on Cefdinir last Jan. which pushed him even further forward. However, starting last April, he had a series of viruses presumably caught at preschool. Last May he bagan tp have flare ups of symptomology remeniscent of his acute episode last Fall. Dr. B warned that it may be too late and that he should have had the med mix sooner, but we are trying a 30 day protocol of Augmentin ES, BID, as well as a dose of Azith daily. I think the suspicion is that my son has another "bug" such as Myco going on now, although he is classic PANDAS:Strep historiclly, with no co-diagnopsis. I am very pleased also with the deep digging for other underlying illness that Dr. ordered thru blood work. Although my son has been treated by solid docs, this has always been a concern for me and I am glad that it is being addressed.

The man has something going on here. My little boy is vastly improved with the abx protocol that he has prescribed. Could this possibly be the beginning of the end of this nightmare? After a whole year of abx, after an acute episode last fall...after 1.5 years of known PANDAS with no protocol prior to the acute episode, my kiddo is doing very well. We started the new med mix less than a week ago after seeing Dr. B on the 25th. My son has already had days that brought me joy and tears - bittersweet in seeing the emerging person that I have missed so much during these most important developmental years. Lots of tests and digging - cannot wait to get the results and worth every penny for the peace of mind of "knowing" that the Igenex results may yield. I will never stop maintaining that my son will be cured. We are getting closer every day to health, and we are so much further away from the severity of last Fall.... Love to you all and your beautiful children. I'll be damned if I ever lose hope for any one of them!! K

PS: It may be worth it to see Dr. B in CT. We are traveling there from NC later this month for our 1st appt. because he is so highly recommended. Some docs seem reluctant to treat PANDAS aggressively and although caution is important in dealing with our kids, sometimes there is just no time to lose!! Take care, Kath

Dr. Gellar at Mass General is apparently one of the pioneers in treating PANDAS, as per Beth's book "Saving Sammy". I do not know anything more about him. Here is what I have for Mass. If they can't take you, perhaps they can point you in the right direction. Good luck and positive thoughts to you and your family! MASSACHUSETTS Dr. Daniel Geller Director, Pediatric OCD Program Massachusetts General Hospital Child and Adolescent Psychiatry, Yawkey 6A 55 Fruit Street Boston, Massachusetts 02114 (617) 724-6300 x133-1056 (617) 503-1436 Peggy Chapman (Psychiatric Nurse) 62 Derby Street #11 Hingham, MA 02043 781.740.8300

My son was 3, almost 4. It was an o/p T & A procedure and he was home within hours. The 1st 2-3 days were tough w/ lots of pain and poor sleeping at night, then he seemed better. But at the 1 wk. mark he had a couple more rough days which I have heard is common. He took the pain meds that they gave him for 3 days then I nixed it and replaced with Tylenol. These are his physical symptoms, minus the total upheaval of PANDAS symptoms (since your daughter is not a PANDAS diagnosed kiddo).

jdude, agreed - my son is the same - prior to this weekend when he had a flare-up, you would never know he was ill unless I told you and he has no other diagnosis than PANDAS. His PANDAS doc told me that kids with Autism tend to be more susceptible to PANDAS, thus confusing diagnosis. She thinks that it has something to with Autistic kiddos having a more leaky blood brain barrier. She seems to think that they are 2 separate entities as well.

Thank you for all of your suggestions. We are going to see Dr. B in CT on the 25th of this month and I will bring all of this up with him. I hear he is amazing and we are really hopeful that we will start moving forward again. My son's current doc will not consider ongoing Azith, but is willing to judiciously allow for the 5 day run occasionally. He continues to be on Cefdinir. I was very suspicious that he had Strep at the start of May (fever, sore throat) but we were out of town at the time and he was not tested until 8 days after the onset (he was mostly better by that time). Test was neg. Titers in late May were way down from the usual over the previous year, which was always quite high. Myco showed up but was "old" and apparently of no concern (he had pneumonia last october). Lyme was neg. No new stuff in the house and he has always battled this stuffy "allergy" nose. It comes and goes with no rhyme or reason, but recently has been pretty bad. Actually, ever since that sore throat and fever in May he has had trouble. None of us have been tested for Strep/Myco, although I mentioned it to his current PANDAS specialist, she did not seem to feel that it was necessary. He has not had a nose swab, just throat. I do not know what C3d, C3a and C4a are, but will bring it up with Dr. B. I am concerned about steroids because he is only 4 and I was told that they can axacerbate tics and cause psychotic symptoms sometimes in little ones? As for buffered Vit C, does it come in a kids form? He cannot swallow pills yet. Also, he cannot take Benedryl as well as several other OTC meds because they seem to cause PANDAS symptoms to worsen. He only take abx, Ibuprfen (which I am careful about because his PANDAS doc says she is worried about liver damage if used a lot in conjunction with abx), and a cold remedies from Whole Foods. Sorry about the hodge podge of answers - just trying to address it all! Thank you - you have helped me to start my engines again (stalled out last night for a bit and rev up for further battle! Bless you all and your beautiful children!

Thank you so much! When he had his acute episode last Sept., just after his 4th b'day, I maintained and I still maintain, that he will fully recover. He has classic Strep PANDAS that went untreated for a long time, but no codiagnosis and is a healthy normal child in between flare-ups. I will never give up but it is hard not to waver and lose hope during these times. I also call it the emotional roller coaster and it is very hard not to get my hopes up (I do it every time) despite my knowledge that it may not stick. Your kind words have bolstered me into action again and I will look forward to seeing him in the morning a little more refreshed and solid. Positive thoughts to you and yours!

WHAT I WROTE JUNE 18TH: We love our children. We would do anything for them. I make bargains all of the time with the powers that be. No rhyme or reason, Brooks just started hitting the skids again and the Cefdinir that was so successful (low levels or absence of PANDAS symptomology for almost 2 months) seemed to have stopped working. We were seeing OCD, vocal/facial tics, adventitious upper body movements, excessive irritability, extreme separation anxiety, regression, hyperactivity, etc. He just went down hill fast starting in May - we had not seen these symptoms quite so extreme since his acute episode last Fall. Last Sun., he was a mess and I was frantic. I started a loading dose of Azith on top of the Cefdinir that evening. By the next morning, hyperactivity was almost gone and this is always the first to go. over the next 2 days he looked better, but was a little up and down in OCD symptoms and some others. By Wed. he was completely normal, healthy and all PANDAS symptoms were gone. The run of Azith ended Thurs. Still looking great and when I give him direction, he says "OK Mommy". That's it. No arguments, screaming, etc. Just "OK Mommy", and he smiles. Sadly, I have a hard time remembering what my healthy child looks like after a tough run like we have had....but I will take it. Now, to make it stick. I send all of my thoughts and prayers to you and your children. AND NOW: My son was doing so well - he was completely normal with total absence of PANDAS symptoms from 6/15 through 7/1. He awakened on 7/2 and I could see that he was less solid. He started to get hyperactive throughout the day. By 7/2 he was starting to have vocal tics and involuntary movement, as well as some regression and that familiar "spaced out" ot "out there" behavior. he has wavered but held his own until tonight. Starting this resurgence a week ago, he also started a cold with a stuffy and sometimes snotty, sneezy nose, but no other symptoms. I assumed that it was a resurgence of allergies. Whatever it is, has tamed a little but not left him, and seems to be causing all of this. He has been very active with Little Gym Camp and school all week, rarely stopping for the day except for lunch. I thought it was good for him and he seemed so happy. I picked him up from camp this afternoon and he was OK, tired. He fell asleep for 20 mins around 5PM and I woke him up because I didn't want him to go to bed too early, thus missing his meds. Within a 1/2 hour he was thru the roof, hyper, tics, chorea form, inability to concentrate or even hold a conversation as his listening skills were nil. I had to lay my leg over his little ones to get him to be still enough to finally sleep. he was clearly exhausted but couldn't be still enough to fall asleep. I couldn't help crying as I held him in my arms after he went to sleep. I am so bitterly disappointed! He had been improving so much since the start of this year with months of health and normalcy from Jan - April. I had hoped that the downhill stuff in May/June was a bump in the road. It is so clear that the Azith simply knocks it out and does the trick, but it doesn't last! I am thinking that we should just cut to the chase and go for IVig as soon as he turns 5 in the Fall. I am afraid, however, that he doesn't present as sick enough for a doc to give it to him. I have entertained the thought of taking him off of his daily Cefdinir when the time comes and presenting him to a doc 1 week later, so he CAN be seen as baseline. This kid really responds to meds but it never sticks. Sorry for venting. Any suggestions? SO sad; another of many broken hearts for me...