beeskneesmommy

Throughout our PANDAS journey of wild roller coaster rides, I have become less sensitized to the stories of pain, loss, fear. This is because they are also my own stories and I have had to toughen up to help us survive. It is the stories of triumph that make me cry the hardest. As you know, all thoughout our PANDAS travels I have maintained that my son, OUR kids, have the potential to recover...and to make it through whole...perhaps not unscathed, but successful. We have come a very, very long way as well. Your post has left me dripping with tears and smiling. Here is to you and yours and the most wonderful, sweet, family-filled years ahead. -Kath

For my son, then just turned 4,cough, typical kid fever (not terribly high but in the low 100's for a day or 2), chest that got tighter sounding. Took him in and he was dx w/walking pneumonia. Titers showed Myco was elevated whereas 6 weeks prior to the pneumonia when titers were taken, Myco was normal.

New labs for Brooks: Neg on Lyme whereas it was + last July and titers are down to close to normal range for the 1st time since last Nov.! New labs on me: ASO spiked to almost double from labs in mid-April. Brooks is doing extremely well since about 1 week after I started a 30 day Augmentin protocol. Things that make ya go Hmmm...

Thanks. I needed this. I was really upset w/my son today for some pretty bad behavior (pretty sure it was a choice, not involuntary d/t PANDAS). His behavior made me so upset as I think it may have cost me my friendship (for fair and good reasons) with one of my only good friends here in NC. I was pretty hard on him. However, no matter how badly behaved he was, I would sell my soul for him. If I ever lost him, it would be the end of my life as well. I hope that family finds their way thru this terrible tragedy.

Thanks all. Dr. B will do it in late Aug. but it works against our timeline. I had planned on it earlier, rather than later in the summer. DS5 is starting kindergarten at the end of Aug. and I had hoped to do the 1st IVig and then take some time away from other kiddos and germs/Strep, isolating, so that I could protect his immune system optimally. Wouldn't you know he is on an upswing right now, really close to 100% for several days, so it does not feel as urgent on this day. However, the roller coaster has increased over the past few months and I have to assume that he will continue to have PANDAS responses when he mixes with other kids and the public in general. I see IVig as a possible way to stop this freight train.

Anyone know of any docs that will provide IVig in these states? We are in NC and we are considering it because our son continues to have flares. We can get it from our doc up north, but not until the end of the summer, just before our son enters kindergarten. We had planned on doing it early in the summer so we could isolate him from Strep and other germs afterward.

Well, this is what really got me - Those many cases that supposedly weren't really PANDAS - well. at least some of them probably WERE PANDAS and then were not treated correctly because of these crazy doc's "correct" dx, leaving the parents and kids out to dry! I was so angry when I got off of the phone that I was shaking for 5 minutes. @minimaxwell: are you being treated by Dr. Gellar (sp?) at Mass General?

I have a FB group called Carolina Parents P.A.N.D.A.S. Support for parents in the N and S Carolina. Afriend of mine runs a support group every 1st Mon. of each month at a Sarbucks near Raleigh...PM me if you need a link

This makes me so mad. I recently called Duke Childrens Hosp. in Durham NC, and was transferred to Neurology by the referral staff member there. I was given the names of 2 docs who "treat PANDAS". When I asked the receptionist for an appt. and inquired as to the experience of the docs, she put me on hold. She returned several minutes later and said, and I quote "They are all tlaking right now and trying to decide which doctor will see your son, because they really don't believe in that diagnosis". OK, well then why are they wasting my time and money? I asked this very question and she said "Well, a lot of kids come here with a PANDAS diagnosis and then the doctors find out that the diagnosis is wrong and it is really something else". Really?? The lack of professionalsm and the attitude of this hospital floored me. This, after they were in part responsible for my son's lack of care when he was 1st diagnosed at age 2.5. I took him to a Neuropsych there who stated: "It could be Tourette's and it could be PANDAS. The symptoms following Strep seem to point toward PANDAS...come back in 6 months". 6 months later we were in serious trouble and the train had already left the station. Thank you so much for throwing my son to the wolves. I will stick with our long journeys to the North, thank you!

Hi - what are thoughts about consistently high igg myco titers (w/normal level igm) for a very long period of time. My son had normal levels for both igg/igm Sept. 2010, then had walking pneumonia Oct. 2010, and his igg has been betw. 130-140 on every blood draw since. Would we expect it to decrease over time? St6rep titers fluctuate between normal range and high throughout time, depending upon exposure, but the Myco never really changes...

DS5 has increased PANDAS symptomology and neg. response to Allegra, Benedryl, Zyrtek. Stopped giving anything because his reponses were so acute. Recently, the PANDAS doc suggested Singulair and I said no. I have since discovered that many parents are reporting probs with Singulair and one parent stated that Dr. Tanya Murphy publicly advised against it at a recent conference (do not know details, just that a parent reported this). That's enugh for me - what HAS worked very well to control my kiddo's awful pollen is daily Nasonex. Changed our lives as he has had constant icky congestion since he was a newborn.

My son usually has both ASO @ Anti-DNASE elevated when he has a flare, but I am not sure why I have higher ASO. Prior to having his T&A 8/2010, I got Strep x 2 from him although I had not had it in 30 years that I knew of, since I had my T&A at age 17. Rapid came up + w/no tonsils and my doc was amazed. My son reacts to people who have Strep around him, although he shows no signs of infection other than elevated titers (and PANDAS symptoms). I think he may have had his 1st Strep infection at 14 WEEKS. It was afterward that I started to get sick w/ this familiar respiratory "cold" that sometimes would last and last, producing a dry cough that went on and on sometimes for weeks, and a loss of voice. I am thinking that I may be a carrier and he is reacting to me?? How do you actually identify a carrier?

Major thumbs up!! Question - did the NIH study do IVig just 1 months apart?

OK, so I had a routine physical a couple of weeks ago and just for the heck of it, threw in my ASO and Anti-DNase. The ASO came back elevated, which would indicate recent Strep infection. I had several "colds" in a row about 6-8 weeks apart, all very familiar, and mostly the same - slightly irritated throat turning to a stuffed up nose and them leaving the system fully after about 5 days. I have been getting these things since my son was born 5 years ago. In the same token, my son has had a really rough time w/PANDAS flares for the past couple of months. Things that make ya go "Hmmmm". Strangely, the Anti-DNase was within normal range...what do you all make of that??

WOW!! You guys sound like you are on to something great here! My little guy is just 5 - wonder what the Pepsid dose is for him, a 45 pounder?? SO exciting when cool, rockin' moms on a mission uncover something like this!

Hi - I am thinking that we should cover all bases before going to the next step of treatment. Although my kid is classic PANDAS, he did also show slightly + on Igenex for Bart and Lyme some time ago. I want to check in w/a reputable LLMD just to make sure, although my son is currently being treated by Dr. B in CT. Can anyone give me the contact info for a reputable LLMD in the Philly area, or Dr. Cameron's info in NY? I also posted on the Lyme board, but you guys are the people whom I usually chat with, d/t obvious Strep:PANDAS diagnosis as well.

Hi - I occasionally hang out on the PANDAS board, but I want to cover all bases before going to the next level of treatment w/my son. I have heard of Dr. Cameron in NY, but I cannot find his contact info, even when I Google. We live in NC but my son is treated by docs in Philly and CT, so clearly taking trips has become the norm. Is anyone aware of a really good LLMD between NC and NJ, and in addition, Dr. Cameron's contaact info? We have done Igenex, so if you know of one who might do a phone consult, this would also work to start. Thanks!

Can someone please enlighten me re: charcoal? This is to rid the body of toxins shed by dying bacteria while on abx? Does this assist w/decreasing herx? Where is it purchased, is it completely safe and what would be the dosage for a 5 yr. old, 45 pounder? Should it be administered spearately from abx/food/ probiotics? Thanks!

We started seeing Dr. B at the end of July 2011 after many months of treatment and desiring more aggressive abx. We went thru the whole Igenex testing also. We did not do steroids, but started on the combo of augmentin and azith. Igenex returned with borderline Lyme and Bart. We knew already that we had classic Strep:PANDAS and "old" mycoplasma on board (from walking pneumonia 10/2010). Aug/Azith are an appropriate treatment for all of the above, so we kept at it. Our son (now 5) has continued to progress extremely well in this treatment option, functioning within or above all "typical" limits for his age. I believe that that this combo of abx has been the reason, as he was a very, very sick child with plenty of acuity on and off for 2 years prior to the start of this abx combo. During those 2 years he was on other abx, but not Azith on an ongoing basis. I never "bought" the Lyme+ results beacuse they were so borderline and Bart may cause false + for Lyme. I can only offer our experience. I will say that through this saga I have learned to distrust most doctors and I have learned to trust Dr. B's judgement. However, he knows me, I make sure of it, we talk every 4 weeks at the very least and I make sure to get my questions answered. I suggest that you write specific questions down, make an appt. for a teleconference and pay out of pocket. Warm wishes to you and your daughter.

Oivay, just wondering where you got this quote - is that an article that you are siting and if so, may I have the link? Thanks

When my son was in the throes of PANDAS, he was extremely controlling, to the point in which I got very irritated with him. Often. OCD is a powerful affliction. It's very hard on you, as the parent. I am sorry for this. Hang in there. Have you tried CBT in conjunction with mediacl treatment? -Kath

I would like the answer to the Epsom Salts also, but as for video games - we disallow Wii or X-box et al, and sparingly allow Ipod videos because our son get extremely involved in them. I cannot imagine that it is good for him for prolonged periods of time to focus upon something that keeps him from typical daily interaction. i think that kids get deep into another place that can feel like reality to them and I discourage that. This being said, I feel that way about all kids playing all video games for any prolonged periods...

I do not think that the tube pushing bacteria downward is such a weird thought process. However, it is also possible that the raw surgical site where the tonsils were taken could still harbour Strep and other bacteria, causing them to "go systemic".

Hi and welcome - so glad you found this helpful and wonderful Suite! I have a 5 year old w/PANDAS and we see both Dr. Elia at CHOP and Dr. Bouboulis in CT. Dr. Elia has mentioned that she has seen aduly and adloescent PANDAS cases, although rare. Dr. Bouboulis is not a pediatrician, rather, an immunologist. He has been instrumental in recovery for my son, who was at one point very, very sick. He is now at 100% a large part of the time. It is very well worth the trip to see him - he is willing to order labs and treat more aggressively than many specialists. Warm wishes to you and your son! -Kath