P_Mom

Does anyone know anything about him? His web-site says he deals with PANDAS. (asking for a friend) thanks!

....and Sammy (of Saving Sammy) had to step over beams he "saw." Hallucinations are far from rare in PANDAS. Don't let any doc tell you it must not be PANDAS if hallucinations are involved....at this point, such statements can't be made by anyone...any doc. There are too many unknowns.

My son also had auditory and visual hallucinations after onset of PANDAS from documented strep in 2007. I believe it is more common than most think....I have heard it discussed here many times since then.

Great news!! So happy for you all! My son also experienced a "flipped switch" recovery so I know exactly what you are saying. Prayers for lasting healing!

Not to speak for P.Mom, but the distinction I see is that "permanent damage" means tissue has been destroyed, the nerve cells are dead. An analogy would be like the tissue damage in type1 diabetes, where the insulin producing cells are destroyed, so the body can no longer make insulin. But "pathways permanently altered" means that there is a stimulus-automatic response developed (learned). But, new pathways can be built and strengthened through practice. So, its like your 1st language is an automatic pathway that has been developed in your brain. But you can learn a new language- it doesn't replace the other pathway (1st language acquisition), but it can also become automatic. So, OCD behaviors can forge permanent pathways and become automatic, but you can still form other pathways that can be strengthened and also become automatic. Thanks Peg....couldn't have explained it better myself. Elijomom.....yes, I know many are not dealing with "classic" strep PANDAS. The original poster was looking for success stories....stories of encouragement and reassurance. She did not clarify a strep case, a myco case, etc. So, I felt my story was precisely what she was looking for ......a story of hope. Oh...I am not sure that the treatment for strep induced vs. myco induced, as examples, would be any different. Make sure the infection is treated (abx)....treat the autoimmune response (IVIG, PEX, steroids)....prevent future infections as best you can. ( proph. abx, tonsil/adenoid removal, etc...atleast that is as far as science has gotten us)

Missmom..... I am one who is not on so much anymore, but, I tell you I lived on the internet and this forum for years. I really wanted to respond to your post because I totally get what you are saying and feeling. I scoured the internet looking for success stories. Please....just let me find someone who has a child that is okay now. Man, back in 2007 when this started for us....there was basically nothing out there about PANDAS. But, there was just enough that I just knew it HAD to be what happened to my sons as they had both contracted strep in the summer of 2007 and they both presented after that strep. My younger son was "gone." A severe presentation. He was only 4 years old. My perfectly healthy, normal child was hallucinating, had debilitating OCD, was homebound, severe anxiety and vocal tics straight out of "The Exorcist." It was unreal and I too lost 15 pounds in one month. I felt hopeless. What happened to my son? He became mentally ill overnight and riddled with severe vocal tics. I envisioned a "life" of him being homebound...maybe even institutionalized. He was put on antibiotics for the strep.....he slowly started to come around. Just as he was making gains, my older son woke up with multiple motor tics and ADHD type behavior. I thought I would die. For him I envisioned a life of Tourettes. So, my two boys had just morphed....just like that. I took my older son in for more antibiotics and he went from a 10 in tics to a 1 or 2 in 24 hours. It was remarkable. My younger son slowly improved. It is now 5 years later. My boys were 4 and 7 when PANDAS hit. They are now 9 and 12 and both are thriving. Not just making it....I mean thriving. Doing great in school, have lots of friends....they are just normal, happy boys. It is hard to believe that they were ever that ill, especailly my younger son. I was really worried he would have lasting problems...but, he doesn't. I will say proper PANDAS treatment is critical. My sons were treated fairly rapidly and both have had tonsils and adenoids removed.....something I feel greatly benefited them. We see Dr. Latimer and still go for yearly check-ups. Both are still on proph. antibiotics. I personally feel keeping them strep free is a must....and Dr. L agrees and says they will be on abx for quite some time even though they are doing great. We don't want to lose all the gains we made. So, I wanted to share our success as I remember the very dark place we were and these success stories are beacons of light. Oh...to address the permanent damage. I don't believe there is any permanent brain damage... but, it was explained to me that the "pathways" can become permanently altered. I do believe what Dr. K said......"Tourettes is just untreated or undertreated PANDAS." I would assume it could be the same for OCD, anorexia, etc.

dcmom....I am right there with you! Your post reflects how things roll in our house and what I want for my boys. We make no fuss about anything except avoiding sharing when someone else is known to be ill. Other than that....we share the soda, the ice cream, 5 second rule is fine here....drink out of water fountains, etc. My son who had the OCD germ stuff pretty severly has non of that left. I am overjoyed to see him share food, not wash his hands, etc. But, it broke my heart when he would not even eat a thing I merely touched with my clean hands. My boys are no worse for it....they are better and have not gotten strep despite it all in almost 5 years.

Hi Fixit! personally, I would stop the allergy shots. I am not sure what your doc, or any doc says, but, the jury is still out on all factors at play in PANDAS. You have seen improvement with abx...you have seen improvement with steroids....these are anti-inflammatory and immune modulators. Allergy shots are constantly stimulating his immune system, regardless of the low dose......immune stimulation is what we need to avoid. My ticcer son is 12 also. He is a major allergy kid. His blood allergy tests revealed he was allergic to EVERYTHING they tested for.....save one strain of mold. I mean everything....I think there must have been 50 or more things on that test. We control his allergies with Claritin ....or sometimes zyrtec...and nasonex. He does fine on these and it controls his stuffiness...especially the nasonex.....that has been great for him. I, personally, would be way, way too afraid to do allergy shots on him....no matter what the doc said. No immune stimulation thank you....and I am sure you know that allergies are essentially an autoimmune disorder.......so why shoot these kids up with allergens and stimulate/provoke their immune dysfunction? I know, I know....it is supposed to be helpful for them in the long run....however, our kids are not the norm and should be treated differently. Just my opinion. Best wishes!

Starlygirl.... Regardless of what you may read or here....the answer is an absolute YES! I have a ticcer only PANDAS child. He develpoed sudden onset multiple motor tics and stuttering after documented strep (the same strep that set my younger son off, too. But younger son had the works! ) Anyway, my older ticcer may have slipped through the cracks because he was only tics, but, because of my younger sons presentation, he was thankfully given the correct treatment and diagnosis within days of onset. His tics went from 10 to 1 in 24 hours with antibiotic treatment. He had a very dramatic response to antibiotics. He NEVER developed any kind of OCD, behavior issues, etc., however, he was kept on proph. antibiotics and had tonsils and adeniods removed. I feel his treatment halted him from progressing. Would he have developed OCD eventually? No way of ever telling. He did wax and wane with tics (mildly...never like with strep)for over 4 years after onset with exposure,illness and allergies.... but, he has become symptom free for the past two years, even with illness! (which I attribute to staying strep free, TIME, and puberty) He is doing fantastic!

Benefit to help fight difficult pediatric disorder PANDAS | wkyc.com www.wkyc.com SOLON -- A Solon 7th Grader is hosting a unique benefit concert to promote awareness and new treatments to fight PANDAS. WKYC.com | Cleveland, OH | WKYC-TV -- News & Information for northeast Ohio from Channel 3 News www.wkyc.com News, weather, radar from Channel 3 News in Cleveland, Ohio. Channel 3 News. Report the Facts. Respect the Truth Anyone going??

I believe she was referring to "regular" OCD...for which there is no known cause and is the most common. PANDAS may be responsible for a larger percentage of (OCD) cases because the ratio of boys to girls (with OCD) is 3:1 before age 10, and then it switches at puberty so that (OCD) becomes more common in girls than boys.[/i]

Thanks for the replys everyone. I knew you would all pick up on the few, yet important, truths his rant contained! Anyway...I am over it. Ya know.....okay so he is Pi88ed about some things......he'll get over it. It is all really coming out of ignorance on his part. He does not have the insight into the disorder that the more severe children have. He never got bad. 2 days after onset of multiple motor tics, he got antibiotics and tics went from 10 to 2 in 48 hours. He never had OCD...none of the mind stuff...he just doesn't get it. So, since he has always felt normal...then he probably is ticked he has to go to the docs and wonders what the big deal is. I guess I can't blame him. His younger brother is so different about it....he gets it...he says..."oh I definitely had that." But, he was bad...had the OCD, etc. I guess it is all relative. I do agree that it is very important for them both to be well informed. We have talked about it numerous times...they know. We spend our 4 hour trips to our PANDAS doc talking about it. My older son would not relate at all to Saving Sammy.....my younger would. I have it and will encourage them to read it....someday. A school speech about PANDAS? Him? Never! So while you guys have kids that aspire to be neurologists to help other kids.....while others make blogs and put on benefits....mine will just be pi88ed off! But I'll take it and not complain.....I am just glad he is well. So, he will get over it...he will deal with it...he doesn't know how fortunate he is.

So, last night I allowed my boys to stay up and watch Dr. Drew. We had talked about what was going on in Le Roy a bit prior and I thought they could see some coverage first hand. Younger son was pretty much disinterested...he did glance at the t.v. from time to time, but, pretty much kept silent. Just as the show was about to end, my older, very laid back son just let loose. This is soooooo unlike him. (it wasn't a PANDAS rage....just pent up anger I didn't know he had) So, it goes like this (out of the blue)...... "Dr. Drew is stupid. I hate that guy. Look at the guy with the bowtie. He is stupid, too. I would never wear a stupid bowtie. This whole show is stupid like everyone on there. I don't even have that stupid disease. The whole thing is stupid. I hate that stupid doc we have to see and those stupid tests we do. Dah...hold out your arms."........me, after I picked my jaw up off the floor. "I know you don't fully understand but this is anything but stupid. It is important and these teens need help. It could mean a lot in the grand scheme of things. By the way, we are going to see that doc next month. It is important and you need to trust me. Don't you remember when you had all the tics?" ......."yeah, when I was like 2." (he was almost 8 and he had bouts of tics on and off for 3 plus years) "Well, you are doing so well because I fought so hard for you to get the right treatment. I don't expect you to fully understand but there was a lot involved in getting you treated quickly and properly." ......"Oh, what. Here, take this pill and you are all better." At that point I fell silent. Ended the conversation (if you can call it that). Oh if he could only grasp what it took.(and no I won't beat him over the head about all that it took) UGH! This is the first I heard such a rant from him about PANDAS. And DcMom, I revisit taking him off the proph. abx because he is obviously angry about the whole thing. But, I just can't do it. Today he was his usual happy self. Took the pill no problem. But, I wonder how this all is impacting him....any long term consequences...I mean emotionally. I have tried soooo hard to keep them as normal as possible. We don't obsess on PANDAS....(well, I do but I keep it hidden from them). I just don't know but I did shed a few tears about it in bed last night.

DcMom... Another thing I thought of that you may want to consider. I remember reading in Swedo's publication of the first 50 cases of PANDAS that the kids who did get breakthrough strep while on proph. antibiotics showed a "blunting of titers." (if I remember correctly) So, I am thinking the abx, although did not prevent strep, helped keep the immune response down. Could the reason your girls recovered so well after strep while on multiple abx be because they were on the abx? I know......never a solid answer with this stuff.

DcMom... It really boils down to what you are willing to risk. Possible ill effects from abx or A bad PANDAS flair? You and I are in the same boat....2 PANDAS kids the same age and both doing well. I think often of taking my older son off, but, it would be against docs advice and when I think about it.......neither son has had any ill effects from the abx BUT the PANDAS was AWFUL!!!...particularly for younger son. We are almost 5 years out and both boys are doing better than ever...it took us this long post strep to get here. I don't ever want either son to go back to that "place." I also know that my younger son is very well aware of what happened...and HE doesn't ever want to go there again. I think if I took him off and subject him to the possibility of going there again(and I know abx are not 100% protective...but, they have worked for 5 years) ....he would be very upset! He would surely want to swallow a pill every morning as oppossed to becoming mentally ill....he understands why he takes it...and has never once complained about it. He is young and is dependent on me to protect him from that as best I can........so, for us, they will both stay on. They will stay on until I am convinced, as well as their doc, that they will be okay. Will that ever happen? I hope so. I also think they should have a say in it...right now they are too young to choose wisely.....when they are older, they will have a better understanding. Think of what you went through with PANDAS...the treatments, etc. Now, think of the trials you have had with abx...that is what I, personally, would base my decision on. (I have also noticed that the kids that fair the best are the ones that had stayed on proph. abx until they were much older than our kids...also, symptom severity is something to consider, however, if each episode is supposed to be worse than the last... is that really a good indicator?)

For what it is worth regarding particular strains casuing particular symptoms.....this is just my experience but both my boys presented with PANDAS after the same strep infection....one presented with tics (zero OCD..... just motor tics,no vocals...some ADHDish symptoms) and the other presented with primarily OCD, debilitating OCD, but also had vocal tics....BAD vocal tics, no motor tics. So, for them,the strain produced dramatically different symptoms and severity of symptoms.

Yes....."should not be unexplored."

Nancy again... I can just see you making those statements with the fingers and eyes going on those key words! Perfect!

Nancy..... Sorry.....didn't mean to make you rant, although, I must say I do agree with everything you said! I guess I figured people were on to me by now...but, just in case, I put "conversion disorder" in parentheses. I guess in my mind that makes it not real! You know....when you are talking to someone and they quote something with their fingers.....it is usually something they are rolling their eyes about along with the fingers going.

Hey....I was being sarcastic! I do not believe stress can cause this either!

Thanks Coco! That is a great song! No man or boy wants to be considered the coward of the county! It makes me think of "A Christmas Story" when Ralphie finally lets loose on the bully that had been picking on him for so long....boy did that kid change his tune! Yep....sometimes ya gotta fight when you're man.

I think I may actually buy the "conversion disorder" diagnosis in her case. Does anyone know if she is affiliated with the school at all? I do agree, EAMom, the toxic thing doesn't add up with me, either. It wouldn't just suddenly appear out of nowhere. Just my opinion...

Watch sun exposure!!! Seriously, I was told to when I was on it....told to use high SPF sunscreen everyday (even in winter) and stay out of the sun...and to wear wrap around sunglasses to protect my eyes. I guess I had to learn my lesson the hard way and did not listen......boy did I pay. I got blisters all over my arms (on a dreary cloudy morning...they just popped out suddenly).....my skin, although it was not red...felt like it was on fire. It took weeks after discontinuation of the antibiotic for my skin to return to normal and not have a reaction to the sun. (I am fair skinned, so, that didn't help)