beeskneesmommy

Thank you. It is not that I am intimidated as much as I feel deeply disturbed over my new perception that there must be some sort of "purist" position re: Strep:PANDAS and that somehow if co-infections are discovered, it knocks us out of the PANDAS ring. My son DOES have Strep:PANDAS, but sadly, life threw in walking pneumonia and, apparently, a nasty little tick. This dumnfounds me, but that's what the labs say, and he is recovering with the extra abx protocol. When we defeat the Myco and the tick infections, he will STILL have Strep:PANDAS because that is the underlying genetic big one. The co-infections have just complicated the recovery. This is how his specialist sees it and how I do as well. I am unhappy that there seems to be such a dicotomy between the PANDAS & Lyme victims, as it seems that the 2 often go hand in hand. I am leaving this forum tonight with an icky feeling whereas I used to leave with feelings of accomplishment as I learned something helpful, or helped another, or found comfort. I wish warm, positive things to you all and, ultimately, recovery for your loved ones. -Kath

In response to the recent firestorm: My son clearly has PANDAS. He was dx at 2.5 and had many, many + Strep tests with the usual rapid onset that subsided w/abx. Then he got really sick after a T&A d/t it being performed while he was Strep infected. His Strep titers were very high and stayed that way for a long time. Couldn't get him back to himself and fought for a long time. He also had walking pneumonia last year and later tested + for Myco. He most recently tested + for Bart and Lyme thru IgeneX. I am not totally sold on the Bart & Lyme dx, however, but it doesn't really matter because he is almost symptom free with the abx treatment that is often used for all of the above. Dr. Bouboulis explains that he DOES have PANDAS but that he also has co-infections. Sounds plausible to me since the less complex abx treatment helped to improve his condition, but we couldn't get him all of the way until we started treating for the Myco (prior to getting the IgeneX results back, but it's the same treatment anyway). SO, because of these recent dx, are we no longer welcome on this forum? I identify with the PANDAS dx much more than Lyme, but I have an open mind when it comes to getting my kid back. Is this now a purist forum, only for those that are attached to PANDAS only, with no co-infections? Please help me to understand, as I find myself feeling really negative and pushed aside as a result of my perception of the recent thread "Has anyone tested neg. thru Igenex?" Kath :>

Well put, PANDAS16!

Gosh, I hope that this was not directed toward my post in part! This thread is getting pretty heated. My point is that my kid absolutely started with pure Strep:PANDAS as evidenced by huge hx of Strep + and PANDAS symptomology, then symptoms subsiding with abx, many times over. I was trying to get the point across that although much more recently my kiddo tested + for Lyme and Bart, the treatment with abx at least, is the same and we have covered all bases. I do not doubt that IgeneX tested accurately, but I do question the interpretation to some extent. In addition, there is significant concern by some researchers that those who test + for Bart may be testing with a false + for Lyme. If anything, I do not wholly buy the Lyme + results. HOWEVER, MY SON IS CONSISTENTLY NORMAL AND HEALTHY FOR THE FIRST TIME IN 2 YEARS!! This stands alone. PS: I AM a part of the PANDAS community on this forum, first and foremost. Please don't send me packing because I shared my son's IgeneX results!

Here's a tidbit of our experience: Preschool son dx with classic Srep:PANDAS at age 2. Relatively managable until he has T&A just before 4th birthday. 2 wks after T&A MAJOR acute episode 9/2010. High titers ASO & Anti-Dnase. Starts treatment with Augmentin, BID. 6 wks. after acute episode gets Myco walking pneumonia. These titers have never decreased (the "old" have stayed high, the "new" are within normal range). 1/2011 discontinues Augmentin and starts on Omnicef, BID, as he plateaued. Significant decrease in symptoms lasts until April 2011, when he starts to demonstrate bigger "valleys" with more sigfnificant symptoms. Interestingly, Myco titers are still high at this point, but after testing every 4 months for over a year, his Strep titers plummet to normal. July 2011 tested for Lyme and Bart thru IgeneX. PRIOR to results, starts Augmentin, BID and Azith 1 x D to treat the Myco. Tests come back + for both Bart and Lyme. No change in treatment as the abx utilized are an appropriate treatment for all of the above. Within 2 weeks after starting this abx protocol, by mid August, my son is practically symptom free and continues to do very well. So, I guess I just wanted to share simple facts from my kiddo's story. Every child is different, but this worked for us. IgeneX is a quality, regulated lab. I do not think that Dr. B would utilize it if it wasn't. More information is good, isn't it? There seem to be variances of interpretation of what constitutes Lyme + between different doctors as well as the CDC. For us, regardless of the outcome of testing, the treatment remained the same and it's working.

I questioned my son's PANDAS specialist about the seeming plethora of Lyme + tests from IgeneX. He stated that he has multiple patients who have been Lyme - from IgeneX. On an interesting piece, I have spoken with one of the leading researchers of Bart in the country. He stated that he believes that when both show up together, especially when the Lyme is "old" (can never remember if tat's igg or igm), he belives that the Bart is true and that the Lyme is a false +.

He could have Strep elsewhere (nose, perianal) ot they may not be swabbing aggressively. My son was DX with PANDAS at age 2.5. he had few Strep symptoms, althoug he had Strep throat about 10 times prior to getting his tonsild removed. Makr sure the Nurse is really scraping his throat. If he doesn't gag, it's not good enough (I say). It's a bummer to do it to them, but this was an issue for us at times because he was so little - they were hesitant to get a good swab sometimes. Fot he 1st year and a half after dx, my son was given abx for each Strep infection: Amox., Cephelexen, Augmentin. After his tonsil removal just before he turned 4, we had to see a specialist as he had an acute episode (wish we had seen her in the beginning but the Peds kept just treating the Strep and not the PANDAS). Anyway, he had turn 4 only a couple of days prior to this. I knew what was going on and convinced his Ped to start a therapeutic does of Augmentin, which the specialist at CHOP continued him on for a long period of time. This history leads me to belive that ongoing abx would be the appropriate treatment for a kiddo age 2.5. At age 2.5, my son was on/off of them often, at the end about every 2 weeks d/t recurrence of Strep. So sorry that this is happening, but it's good that you are on top of it at such an early age. He may be one of those who can completely recover with a long run of abx alone, as it is being caught very early....

Pow wow - I am sorry - hang in there! My son is living proof that kids CAN get better for long (as in 3 months so far) periods of time....

Thanks. I do not plan to do anything right now as there is really nothing to treat. My son has been doing amazingly well for quite a while on the abx protocol that he is currently on. however, I am a plan ahead kind of gal. Hopefully, we will not need it, but there have been so many times in which we thought we were out of the woods, only to awaken one morning heartbroken. I am a firm believer in utilizing the lowest level of intervention possible, and if problems arise, steroids would be the next consideration. I am resistant to IVig and less resistant to PEX, but I consider them both to be viable options as a last resort.

My son is currently doing very well. However, I try to be prepared for crisis because, as we all know, when it comes, it comes fast. I was advised against a steroid burst by a PANDAS specialist because it apparently can cause psychosis and severe tics in small children. However, this was at one time on the table from another specialist that we see and I would like to have viable options in my bag of tricks should I need them in the future. Has anyone with preschool age kids heard of, or experienced these adverse affects from steroid bursts?

I would give the Biaxin a month. When we put our son on Augmentin and Azith, he herxed for a few weeks before settling down and beginning what has been an amazing response to treatment (this, after 2 years of illness and the past year extreme and at times debilitating illness). Definitely do NOT give up after only a couple of weeks - it may just be his body reacting to the toxins released by the abx killing the bad stuff (to put it simply). Hang in there!

Over the past several months I have been experiencing prickly pain and wild, severe itching on the inside of my elbows, shoulder and for a short time, an area of my scalp. It would wake me up at night and I had never experienced anything like it! Cool water followed by very hypoallergenic lotion (dermatalogic, like Cetaphil) helped, but did not eradicate the symptoms. I have discovered since (we think) that it is a form of Excema brought on by stress! Not only are we under great stress as parents, but I am sure our kids feel it pretty strongly as well. This is just a thought - I may be completely off base but I thought it was worth sharing...

More and more moms I know with very little kids (preschool) are reporting that their Peds are giving them FluMist. This is live and I am convinced that it sheds and affects PANDAS kiddos. Obviously, 'tis the season for Strep and other bugs, but I think this may be a contributing factor at school and preschool.

The last time I allowed my son to have the flu vaccine was over 2 years ago, when they were giving the flu and the H1N1 separately, but you could get them both. I allowed him to have the regular flu shot but disallowed him to have the H1N1. He still had a PANDAS response, although I did not recognize it at the time. Keep in mind that my son also is (was?) very sensitive to meds - could not even take OTC allergy meds without a PANDAS exacerbation I steer clear of absolutely anything that can cause a problem, much to my nervousness, given that he is now open and available to the flu/H1N1. For us, however, it is the right choice to take the risk.

I know that docs will offer at age 4. However, it has been my recent understanding from docs that the Flu mist is not recommended for kids who are younger, like my 5 year old. I was always leary of vaccines to begin with because I was so protective of my baby. however, he did get the baby shots and the boosters at 1.5. At the time, the big worry was Thimeresol, and out West (Denver) they offered Thimeresol-free vaccines. he got a plain flu shot a couple of years ago when they were separated, but I wouldn't let him have the H1N1 at the time. He DID get a PANDAS reaction to the regular flu shot. i guess I cannot protect him from mixing with kids that have had the Flu-mist, but it helps, i think, that he is still in preschool 3 x wk and not kindergarten yet. Thank you for you feedback!

I would highly advise that you attempt abx prior to going straight to IVig. I find it disturbing that this has not been offered or at least recommended. There are kids who DO get better with abx. Further testing would be a good idea as well, to make sure that there are no co-infections. There are several other infections that can cause or exacerbate PANDAS. IVig is a great treatment and many have benefitted from it. However, it is usually not a one time "cure" and many need to return to have further treatments. It seems that, since you have to wait for IVig anyway, trying abx in the mean time would be a smart choice. Below are the only referrals that I have in Ill., and know nothing about them except that they treat PANDAS. Good luck! -Kath Karen Onel, MD Center for Advanced Medicine 5758 S. Maryland Avenue Chicago, IL 60637 http://www.uchicagokidshospital.org/physicians/physician.html?id=6204 Anjum Usman, M.D. 603 East Diehl Road Suite 135 Naperville, IL 60563 Phone: (630) 505-4040 Fax Number: (630) 505-9847

Wow - good work and how wonderful to have a Ped willing to treat! I hope that your kiddo continues to improve!

In addition, my husband and I make sure to get the flu vaccine so that at least we can protect our son within our little family circle...

I was advised by a very well known and reputable PANDAS specialist not to give the flu vaccine now that the H1N1 is in it. This doc told me that there were several cases, both brand new PANDAS as well as exacerbations that resulted from the vaccine last year. We did not get it last year and we will not get it (or any other vaccines this year). Also, a friend of mine with an almost 5 year old allowed him to have the flu mist 4 weeks ago and he had sudden onset of behavioral problems and unusual irritability/mood lability that coincided with the mist.

Good going Maggie - best to you and yours. Kath

Yay!!! Great work! SO glad that he started Augmentin! Don't be alarmed if it takes up to 10 days to see any results. Some kids respond to abx immediately and some take a little while. How wonderful that you have a cooperative doc to give you a hand! Keep us posted and good luck! -Kath

Thanks - I know I cannot protect him from other kids being vaccinated (sounds strange when I put it that way). However, he is the oldest in our play group - just missed the birthday cut-off for kindergarten by 5 days. I had understood by our Peds that 5 years old is the vaccine age. What I can assume, I think, is that no 4 year old would be getting live flu vaccine as it is not recommended for littler guys. I appreciate your response. I find myself worrying about the other shoe dropping all of the time because we have had such good fortune in Dr. B's protocol and our lives have drastically changed for the better over the last few weeks. I can honestly say that I have not had this level of reprieve for 2 years. I find myself letting go and laughing, like really laughing occasionally, and it feels alien to me - had not realized how deep into the abyss I had fallen until things got brighter. I cannot bear the thought of losing him again and I am hypervigilant right now as a result! Best to you, Kath

Hi: My DS5 was exposed to day to another boy who had just come from the Ped's. he had bandaids on and I found out he had just received his vaccines for Flu, DTAP, MMR and Polio. I have heard about vaccine "shedding". What are your thoughts on this and if it occurs, how long after exposure would we see a response in our son? DS is doing extremely well in the PANDAS department right now and I am loathe to see the balance upset (especially since we are going on vacation in a couple of days....

2 things: 1) I quote you: "I know if I go to Dr. B or Dr. K, they will offer IVIG. So I don't go, because I don't want the "one size fits all" treatment protocol". I have had a consult with Dr. K and and we are currently in Dr. B's care. They are very different in their choices and approach, as well as their belief system re: PANDAS. Dr. B at no time jumped directly to, or pushed IVig. To the contrary with us, he immediately ordered thorough testing for my son and his well laid plan was to try an abx combo first, then consider steroids if there was no change, then "discuss" the idea of IVig as a last resort. The testing and the results of the abx protocol says the rest for now. 2) I quote you: "Also wanted to say that, given our family history, what are the chances this would really be Lyme"? I have a huge family hx of Strep, Scarlett, Rheumatic, some OCD as well. It is believed that I also had Strep:PANDAS as a kid. I have to say that I really questioned the idea that Lyme could be present, especially since we moved here from Denver. I was floored when the tests returned as +. However, it is not a question of EITHER Strep:PANDAS OR Lyme, but BOTH. My son clearly has Strep:PANDAS, as evidenced by his obvious history. However, his inability to recover is due to the Bartonella and Lyme thrown into the mix (likely both from the same tick bite). Now that Dr. B has tested and discovered this (rather than starting IVig immediately, which he would not do), my son is recovering beautifully because the right abx are being administered to the presenting infections. I feel really frustrated that we are all trying to provide some ideas and that they are being rejected. I hear you when you say you don't want to make it worse with various treatments, etc. however, TESTING seems to be what you are after. Therefore, GO TO A PANDAS PRACTITIONER THAT WILL ORDER ALL OF THE NECESSARY TESTS. There are some - that is why we made the trip to Dr. B. We knew he would test and that's what he did. Plain and simple. So, if this is what you want, go and get it!