beeskneesmommy

My son has frequest urination only just before, during and after a flare. This is one of the ways I can tell a bug is on its way, even before any other PANDAS or illness symptoms arrive. I can tell when things are truly winding down because this symptom subsides. The constancy that yours experiences make me wonder - have you had your kiddo checked out for UTI or any other causes of the concern?

I found this to be disturbing, to say the least. I had not, in my many years of practice, heard of the connection between psychosis later in life and RF and SC. I question the viability of this research, but I appreciate all of the responses. My colleague is most interested in debunking the Schizophrenia dx of this particular client, who had sudden onset psychosis. I suspect that, since the client has reached adulthood, Schizophrenia may be correct. However, since it was sudden onset (over night) with seemingly no preceeding symptomology that would lead into psychosis, there is valid reason for suspicion that it mat be related to infectioin. Thank you for your relpies and ideas.

I think it's extremely important to take into account which articles you post here. This article is 6 years old! Medicine changes drastically in 6 years and so do the tools available to treat the illnesses. Every disease is a combination of genetic, environmental and infectious triggers. There will always be inflammation. Examples are quoted here from the 1940s!! Clearly the outcome will not be as good as it is now.

It was strange to see my post in this thread from last May. DS5 still sees Dr. Elia in addition to Dr. Bouboulis. DS is recovering fully and most days is at 100%. He has been in pretty good shape since about mid August after he started a new abx protocol at the end of July. Dr. Elia is a compassionate, kind doc. However, it is my suspicion that her hands are tied in many areas re: treatment of PANDAS d/t CHOP politics. She tends to treat the most acute cases. She is conservative, however, she treats with both PEX and IVig now. She is willing to provide ongoing abx, but not ongoing Azithromycin. I added Dr. B to our team because I felt that DS needed more aggressive treatment with abx. DS got this and I was correct. DS has made exceptional progress over the last 6 months due in part to the mega abx and, I suspect, the passage of time since he had a T&A. Dr. Elia has no problem with the fact that he is seeing another doc in addition to her. I feel that Dr. Elia has a great deal to offer, including a place to receive PEX or IVig safely, should DS ever need it in the future. I appreciate her understanding of PANDAS and will continue to keep her on our team. If you live in the Philly area, I would recommend starting with Dr. Elia at CHOP, to get the ball rolling with dx and get some abx on board. I made a point of creating a paper trail that would work in our favor and I am glad that I did! I would also recommend creating a team of docs for treatment.

1. It was a very long road recovering from the T&A as it was the proverbial last straw that caused the extremely acute onset. DS then age 4 was dx ar ate age 2.5, and T&A was recommended d/t multiple and practically constant Strep Throat accompanied by PANDAS symptomology. DS was infected with Strep at the time of the T&A. I asked x 3 for abx prior to the surgery and was told it was not necessary. All you know what broke loose after the surgery and within 24 hours I knew we were in very big trouble. Within 10 days my son was so symptomatic that I lost him to major PANDAS symptoms and he became almost non-verbal for several days. It took the better part of a year on various abx to get him back, and he only came back last July when he began a more aggressive abx combo. Fast forward - I DO think that he has improved in part d/t the T&A because he has not had active Strep in his throat and we did get his titers to normal for several months. I would do it again, but very differently, insisting upon a big sterilizing daily dose of abx, perhaps even Azith, for at least 4, if not more weeks pre-surgery. 2. Symptoms prior to surgery were very difficult, particularly the bx problems that arose from the OCD. DS had facial grimaces, tics and hyperactivity, but nothing compared to what happened post surgery d/t active Strep and no preceeding abx. 3. Pediatrician and ENT both recommended that DS have a T&A, mostly justified by the multiple Strep. I was told by the arrogant, idiot ENT "No tonsils, no Strep, no PANDAS". Clearly a poor man for the job. Good luck - I think it has made a huge difference in recovery, but precautions are very necessary! -Kath

Hi - I have recently read in some posts (can't remember which forum) that d/t PANDAS, a door is opening to consideration/research regarding onset of Schizophrenia possibly being infection/imflammation based. I have a friend/colleague requesting info on this and since I have been out of the MH community professionally for several years now, wondered if perhaps any of you know of any links to info/research on this topic?

Please join us! Link: http://www.facebook.com/#!/groups/196042083811437/

Carolina Parents' P.A.N.D.A.S. Support Group for parents residding in NC and SC is staring to gain a little momentum. For those that are in these states, please feel free to join. Link follows: http://www.facebook.com/#!/groups/196042083811437/

I get 3 bottles at a time that equal 27 days worth (doc writes it for 30 but this is the way it breaks down). I mix it myself when I run out so as not to waste and to keep the potency at optimum levels. On the 1oth day, the potency begins its degradation. This med, along with Augmentin, daily, has restored my beautiful son to me. As of mid August, we ceased being a family in crisis after so, so long. My son continues to looke better and better as time goes on. Thank God for Azith.

MMWG, I have no doubt! After dealing with this for over half of my little boy's life, I know that his antibodies react to other, outside illnesses. I watch it happen sometimes. Indeed, it may sound crazy, but I will testify that each time over the latter part of the summer and early Fall that I saw a change in my son, I would ask the mother of the playmate that he was with and inevitably, the playmate had received the live Flu mist within 2-3 days of my son being exposed to him/her. THIS is why we are opting out of vax at this point, at least until his BBB and the rest of his body become more mature and able to handle them! colleen donny, hang in there. Dr B has taken us very far with his protocol and he knows what he is doing. My son is far enough along that I can rate him at 85-100% most fo the time now. When he catches a virus or is exposed to Strep, he takes a dip, but nothing like he was experiencing before. I belive that we are on our way to full recovery. After starting w/ Dr. B last July, our lives rapidly changed from awful, constant crisis, to something pretty close to normal a great part of the time. Kath

My son is so sensitive to Strep that, while on daily abx, if he is exposed to someone else, although he does not get infected, he REACTS to the point that his titers actually elevate significantly. Strep presents with "atypical symptoms" in some kids - my son NEVER complained of a sore throat - all he presented with was a fever most times. It would be a great idea to get your sick kiddo swabbed...The abx combo and protocol sound like you may be under the care of Dr. B?

I have learned to be thankful for what I have each and every minute because we all know - we can awaken on any given morning and our children can be "gone" again, with no rhyme or reason. Thank you for this post that I have been reading while my son watches "Chicken Run" on my bed. He says his feet are cold. I will go now, and warm them up and hold him close, all night - yes - another thing I am thankful for - not really giving a flying fig anymore what people think and not following the advice of pediatricians regarding separation with a 5 year old. He can sleep with me if it makes him feel safe. Love and blessings and many, many good things for you all! 2012 will be our year. Keep fighting the good fight! Thank you Arial. Kath

Thenmama - very well spoken. From my perspective as a psychotherapist with a history of working with adolescents in acute care, the public behavior of Mechtler as a medical professional is shocking. Far beyond their recovery, these kiddos will be dealing with emotional scars formed by public ridicule as well as significant confidence, self-esteem and trust issues d/t being labeled as they have. Conversion d/o en masse is very rare and I simply do not buy it. In addition, I have been informed during my relationship with well known PANDAS specialists that, although much less common, onset in adolescence is a viable occurrence as well as (although apparently much more rare) in adulthood. I find myself seething at Mechtler's arrogance - perhaps it hits a sour note for me as it took more than 10 doctors to finally treat my toddler, although they blaringly all agreed that he had PANDAS! I am so disturbed by what these kids and their families are dealing with. Thank you for your concise statements and thinking process! -Kath

We have our specialist write a letter of exemption and that seems to be satisfactory to all (schools, peds., etc.) The religious exemption is handy for schools - I know several PANDAS parents who ust don't feel like dealing with the red tape so they go this route.

Just noticed it on Pandasnetwork.org and remembered a PM from someone asking for help. I looked and looked in order to assist this gal - even have a colleague in Phoenix (psychotherapist) whom I asked for help with references. She is pretty learned and she was unable to provide any. Thought I would at least pass this on, Will continue to do so... If you can give me any more info, please PM me as my colleague will then have more opportunity to assist PANDAS parents in her AZ community...

Ongoing, therapeutic dose of abx since Sept. 2010. Augmentin 9/10 - 1/11; Cefdinir 1/11-7/11. Occasional, intermittent z-pack (5 day doses) showed marked improvement in addition to these meds, then symptoms returned within 10 days after z-pack ceased. 7/11 combo of Augmentin and Azith, daily has been incredible. I attribute this treatment, in addition to my son no longer having tonsils, to his recovery. he is currently 100%. No gut problems, although we try to get in at least 1/2 dose of Yum Yum Dopholous per day (we manage to make that happen aroung 50% of the time).

I notice little support for AZ parents and often see requests for help. Found this: http://pandasnetwork.org/2012/01/az-pandas-parent-networking-meeting-02042012/

If it were my tiny 7 month old I would high tail it to the nearest Children's Hospital to see a pediatric neurologist. Sounds like you are concerned and this may be something going on that has nothing to do with PANDAS, just as possibly as it might. Too young to wait and my faith in pediatricians is pretty low, generally.

Go, go, go Dr. T! What a modern day hero!

This has been a nasty cold/flu/Strep season. My 5 year old son is under the care of Dr. B. He started an abx protocol in July that was nothing short of miraculous. Although he began the journey of PANDAS with very high Strep titers, they had been in the norm range for months before seeing Dr. B., and continued to look good. He was practically 100% for a long time since getting the bump from the Augmentin and Azith from Dr. B in July. Anyway, he took a dip in Nov., for no apparent reason. This lasted a few weeks and then he leveled to normal and continues to look really great. During that dip, we drew blood and his titers were elevated significantly. Basically, although he did not become Strep infected, he must have been exposed to a teacher or kiddo on an consistent basis who WAS Strep infected and he reacted. It is quite possible that this scenario may have ocurred with your kiddo as well. They do not have to be infected for their anitbodies to react, if they are very sensitive. My son reacts to other kids who have recently had the live Flu Mist. Hang ion there. Dr. B knows what he is doing. He has been excellent and aggressive with both labwork and treatment in our case. -Kath

When my son was in the earlier, really bad stage of PANDAS, we often saw this. The teachers would say he dis OK but when he would get in the car at pick up, his tics would be shocking to me in their prevalence. After returning home and having some juice, relaxing and just having lower stress for a little while, he would start to look better. I ma firm beliver that stress and poor sleep are big exacerbators of symptoms. Poor babies!

I was a practicing psychotherapist for years in acute hospital setting w/ children and adolescents, prior to becoming a SAHM. I rarely saw a dx of conversion d/o and I felt that it was another bucket dx as well. I do thinlk that there are holes in the vax and the PANDAS dx, as we have not been given the info that all of the kids had a vax or had been exposed to Strep/Myco/Lyme/Bart, etc. My concern w/ the PANDAS dx d/t infection is that they seem to claim that there had never been an issue prior in life, and adolescent onset w/ no prior PANDAS response hx seems unlikely for 12 teens. However, I DO have suspicion that it may have been some type of PANDAS or PANDAS-like autoimmune response to - what? I think that before fighting hard before or against, I need more info. Just like everyone else! The vax seems more likely, if, indeed, they all received it or if it was live and they were in close quarters perhaps?

http://sanevax.org/the-le-roy-twelve-and-dr-bernadine-healy-susceptible-groups-and-increased-risk-of-serious-vaccine-injury/

I am disgusted by the "mass hysteria" dx. Shall they also be dx with "female histrionics", which was Freud's answer to women experiencing depression? Aren't we supposed to be beyond that in the 21st century?

Immediately upon reading your description, The behaviors struck me as compulsive - Just like light swtching, counting, insuring symmetry, etc. These behaviors can be very annoying, and I often have found myself addressing them with irritation and yes, even time outs in the past, until I saw that my little boy was unable to stop himself. Have you done any CBT?