P_Mom

Mistreated PANDAS is tragic!! Making a newcomer afraid of steroids because of "lyme" is tragic! I have NO DOUBT your story is one of MANY. I have been there, done that...and it IS really tragic...you are right. LLMD's office's full of people who are suffering from something and any LLMD I know of (not all , I know) will say LYME and pump you full of Lyme treatments. yes, the stories are abundant, but, there is nothing to prove these negative people have Lyme. Clinical symptoms? Ok....is Lyme the only reason for these symptoms??? COULD the possibilty exist that PANDAS kids cross react with Lyme tests??? Crazy thought...huh? Could the possibility exist that not all PANDAS kids will see 100% remission of symptoms WITHOUT it then being Lyme?? Possible? Have you ever supported a strictly PANDAS diagnosis? (without it then being worms, etc) I really don't expect a response.

Sounds familiar. My son had one done because of "reflux" (which turned out not be be reflux....he would have reflux symptoms...regurgitating food in his mouth, etc...classic reflux stuff). He also had intermittent stomach pains, nausea,lump in throat, occasional constipation and some food sensitivities. A wonderful GI doc (I couldn't believe I found a mainstream doc at CHP that thinks outside the box...they are notorious for "not believing in PANDAS") ....was really interested in his PANDAS!(WOW) But, he wanted to rule out more serious things first. H.Pylori, EE, celiac, GERD, bacterias, etc...more stuff than I can think of right now. If anything was found...we would treat accordingly.....if he found general inflammation of the esophagus (indicating GERD)...we would treat with regular GERD meds. I was expecting some kind of allergic thing to be found...some Eosinophilic cells for sure...I thought. And, maybe some inflammation from the "GERD" Well...nothing. No inflammation (no GERD)....no EE, no H.pylori...no celiac (he did several biopsies looking for "stuff"..bacterias, etc.)...nothing. So, he is on no meds for his weird GI stuff. Why treat for GERD when it is not there? His stomach pains are gas, which I knew beforehand becaue I told the doc he would have brief pains and then pass gas or go to the bathroom right afterwards, and, viola...no pains anymore. So, this doc, and I, are convinced it is related to PANDAS......some kind of sensory phenomenon happening with his esophagus/stomach muscles that contract and push food up. An internal tic. It does wax and wane. Very strange, but, it makes sense now. So, no GERD...pains due to gas..nothing allergic (EE)...no h. pylori....regurgitation considered a tic and PANDAS related.....nausea (infrequent and not severe) ...may happen when he is hungry, anxious/nervous. So, even though we found nothing...I was glad we did it because we now know there is nothing that needs to be addressed and I can relax about it. I would have never been able to relax about it if we didn't have it done. Several PANDAS docs have stated that general, unspecified GI complaints are another common PANDAS symptom. (I think Dr. K states it on his site) I don't know how common it is...but, I have heard from several PANDAS Moms that have children with weird GI stuff.

Denise.... For what would the endoscopy be prescribed for? What are her symptoms? I ask because my son had an endoscopy done about a month ago.

2 PANDAS boys here who are negative for Lyme and coinfections. But, what does it matter anyway? If you get a negative IGENEX result....your kid will still be positive because of the Lyme "specific" ind or positive bands. So, be prepared for a "positive" IGENEX result even if it states negative. "The disease has morphed, modified the child's DNA and gone into hiding. NOT dormant, but hiding to regain full strength."....quote from Sf Mom's post. I read soooo many blanket statements such as this about Lyme.......seemingly to come up with something, some kind of explanation to explain the unexplainable. Like the above statement...and, the statement that a positive IGM and negative IGG after being ill for a long time means chronic infection. What I can't find is ANY research studies, actual hard evidence that any of these kinds of statements are true. Nothing. Did they find actual spirochettes in the blood/bodily fluids of a chronic IGM patient??? (with a negative IGG) If so...I would love to see some kind of evidence like that. All the actual research studies that I have read report findings quite the contrary to these kinds of statements. How in the world did the doc referenced to in the above quote come to the conclusion that the disease morphed...changed the child's DNA..etc? (I am assuming a doc made these statements...or, was it a parent) What kind of testing was done to come to that conclusion? Did anyone look at her actual DNA (very detailed and expensive test...can almost guarantee that no Lyme doc can run this sort of test) and find where it morphed and changed?? How does anyone know they are hiding....cause..how could they find them then to know they are hiding?? Where are the research studies to back this stuff up....no, I don't want explanations on what "this leading doc said....", ...or, "this video says...." etc. I want actual scientific evidence to back it up. Like how Cunningham injected mice with strep antibodies and the mice developed obsessive and repetitive bahaviors....I want that kind of proof.

Yes.....my older PANDAS son (was mainly a ticcer with ADHD in the mix when he first manifest).....anyway, he had a bout with restless legs once while recovering from the initial onset. He couldn't stay still to sleep...had to keep moving his legs all around. I get bouts of restless legs from time to time (infrequent)..but, I have gotten bouts of it since waaaay back.

A big flair like that would lead me to think strep. If I were you, I would take him to get swabbed, cultured and also a blood test to look at strep titers. Also, I would immediately switch him off the azith and get him on Augmentin or Keflex. (regardless of results) There are too many resistant strains of strep to Azith......I have seen it fail in my region for strep over and over again...even in my own home.

Oh my gosh Nancy. Could you have found a cuter, more convicting picture?

Dang phone..... Sorry. I know you are Eljomom. I also wanted to say that you yourself have said your daughter is happy. You should be grateful for that.... Many on here have raging , depressed, suicidial, amxiety ridden, homebound kids. But they don't give up! No... We fight like ###### for oír kids.look at your daughter and imagine telling her you are ready to give up on her! And we all wish we did not haveto play doctor... We all wish thinhs were different. Wishing gets you nowhere.....like i said.....time to step up to the plate!

sorry...double post.

I would attribute the increase to nothing more than decreasing the abx and switching to Azith 2x a week.(or strep exposure) Since she has regressed after removal of full strenght abx, it is clear she needs to be on them longer. In my opinion, PANDAS kids should be on full dose abx until they can decrease to prophylactic dose without a return of PANDAS symptoms. She is clearly not there yet.....the PANDAS is very recent and if her blood work fits typical PANDAS...then she porbably has high titers still. Also, there are many strains of strep resistant to Azith. Resistant strain were found in the 90's in the NE and I am sure by now the resistance has grown to include more strains and more parts of the country. Around here...(PA)...I have seen Azith fail way to many times for strep. Happened in my own home. If I were you I would get her back on full dose abx asap. (not Azith....or Biaxin) If you are working with Dr. T...ask for Augmentin or Keflex.

The above several posts are great advice....starting with nevergiveup. Please don't feel like you have it figured out.....you may think we are crazy but we are the ones who had lived it! The docs haven't. We know what works...what doesn't ....and what you need to do to save your child...now. The docs...except the few PANDAS experts...do not!! Time is key and we are tring to help you. "If you knew what could be in store for you, you would lie like a sociopath to get those antibiotic".......no truer words could be spoken...thanks Philly!

Eclairuse... I am also going to be blunt. (it is what you need right now and TRUST me when I say to listen to the advice of the PANDAS parents) Do WHATEVER it takes to get your son on antibiotics, full strength, for as long as possible RIGHT NOW! Preferrably Keflex or Augmentin. I don't care what the docs say, (you are going to get the run around while wasting precious time) GO to a minute clinic and tell them your sons ears hurt or something....and if they see nothing...tell them you would feel better if he were given an antibiotic anyway "just in case." It is what I had to do for one of my sons in the beginning and it literally saved him from developing a more severe PANDAS case. (my older son) My younger son presented much like your son. It was nothing short of terrifying. Do it.....do it today! Quick treatment often brings about dramatic (overnight) improvement and the best chance at getting through PANDAS without stronger treatments. If all you can get is ten days...well, then get ten days worth. Advil can help now, too. This is the step you need to take right now.....the rest will come. By the way...they do get better with PROPER treatment...especially rapid treatment. Both my boys, 5 years later.....are doing absolutely great! No psychiatrist, or psychologist, ever involved. Just antibiotics, quickly and prophylactically..as well as two steroid bursts for younger son. I can't stress it enough to get the abs now! You know what just occured to me.....I know a doc who is really good in times like these when you need help. You can call him and tell him you are new onset and in middle of crisis and need his help ASAP. So, if I were you, I would call him today and make sure if you get his voice mail you make it clear that your child is in episode. I will pm you his number. He is great for initial onset...gets things done quickly.....may need to seek out a different PANDAS doc later....maybe....you'll decide.

The HHV titers are decreasing. Personally, I would leave it alone as it has decreased.

Philamom....sorry this is not related but I have been meaning to ask you. Has your daughter's RMSF resolved? (I hope I am remembering correctly and got the right person)

That is why we quit seeing Dr. K....because of his views on antibiotics. I wonder what he has to say about all the IVIG "failure".......since so many relapse afterwards? Yep...Vickie said it...get them somewhere.

There are not two different types of Epstein Barr virus. Those are different types of antibodies that show up at different times in the infection....used to determine past, current, initial or reactivated infection. (there are actually more of them) Being positive to Epstein barr virus occurs in almost the entire population at some point in time.

Have you taken him to a gastroenterologist?

I am wondering if the anti-neuronal antibodies may be giving a hint of the bigger picture more than we think. Both my sons tested in PANDAS range for Cam K...one high end...one, low end. But, they both had normal anti-neuronal antibodies. They are both doing really well and responded well to standard PANDAS treatments. (antibiotics and steroids (5 day bursts) I wonder if the kids with higher end ana's have a harder time recovering? Don't know....just a thought. Perhaps others will chime in. I would be curious to know, for those that had the Cunningham test done.....what their ANA numbers were, and how they are doing/responding to treatment. yes, me again...Eljomom! Leaving you be now.....

Okay...I totally understand your fear, but, let's back up a minute....maybe this can ease your fear...maybe a little. Pale, high blood pressure, and trouble breathing ....sounds like a possible panic attack.....headache as well. (common in PANDAS....anxiety) I do so pray he does not have an enlarged heart. Some people are born with an enlarged heart (dilated cardiomyopathy)........a silent defect that IF by chance he would have this....you are fortunate to find it. Very hard call on a regular chest x-ray, but, definitely needs to be looked into. Congestive heart failure occurs (if steroid induced), generally, with people who are on long term steroids .......I couldn't see it happening with someone on a short taper. (those doses do not sound high to me...just my opinion and experience) You are mentioning sugar spillage but your earlier post said his urine and glucose were tested and normal..so, why do you still feel his blood sugar is raised? I am just trying to help you calm a little bit.....I don't know....it is easier sometimes for people who are not "in it" at the moment to see things differently. So far, besides the weight gain and moon face.....nothing else can be directly linked to the steroids. I think you MAY be reading the side effects and freaking out thinking your son may have them?? Maybe.......I just mention that because I used to do that. Best to stop reading so much....causes anxiety in Mom which is then turned onto child. Been there....done that....still working on it!

Good to hear! Could your son have been exposed to strep......triggering the frequent urination and tics returning?? Maybe it is not the steroids afterall?? Just a thought. I am curious....how do you know that the steroids raise his blood sugar??

HAHA.....Dr. Kovacevis was our first PANDAS doc we saw. Yes, you got it right..onset, remission, and then expolsion 2 years later. (we now look back and realize he would have little bouts of "stuff" during those 2 years of "remission") No, we did not get right on it...we did not know what the heck was happening to him...we had never heard of PANDAS. Took about from August (explosion) until January to really get a diagnosis and it was then he (they) were put on proph. antibiotics. But, in the meantime, I had done research out the wazoo (like we all have) and just knew what we were dealing with, so, until I found a doc to put him (them) on proph. antibiotics, I did everything I could to get my hands on some abs.....so, explosion in August with strep...2 rounds of abs to clear strep....no treatment for 3 months (still mild symptoms that would wax and wane....motor tics developing (previously only had vocals)...various evolving tics)......250 mg a day of Amox. in December.....ran out for a couple weeks before on PEN VK in January. That is just the beginning of it all...the first 6 months...there was lots to come after that.

Well.....my younger son was the one to get the bursts. Before he got the first burst....he had tics (and ocd, etc), for about a year before he got it....not severe tics...not constant tics, but, wax and wane , evolving tics. My ENT pulled my younger sons tonsils out basically on my sheer request. No kidding....my son only had two strep infections (known of)...his last strep was at age 4, and he just got them removed at age 8. No enlargement... no recurrent infections....no reason to do it really other than I explained to him what happens to him when he gets strep.. he said.."well, by all means...let get them out! " He never worked with any PANDAS doc.....so that is a big statement by your ped. Steroids are a non-invasive treatment. Invasive means..well, how do I put it ....that you really got to "invade" your body for the treatment.....like open heart surgery is way more invasive than tonsillectomy. Oral steroids are non-invasive. (You meant to say..."steroids being less invasive than IVIG...right?) Here is a better explanation..... "An invasive procedure is one in which the body is "invaded" or entered by a needle, tube, device, or scope."

I swear this is my last post because I feel like I am hounding you! I remember asking Dr. K this same question....because my son had had PANDAS for 2 years before we found out what it was. First onset occured after strep when he was 3...he developed "quirky" germ OCD like you mentioned, and we too, let it fly right over our heads...just thought it was a phase. Everything resolved (he did get antibiotics for the strep...but we never put it together)....anyway, everything resolved and we never thought a thing of it again until 2 years later when he got strep and the **** hit the fan.....BAD! He did not get his first steroid taper until a year AFTER the "bad one", he was doing MUCH better at the time, but, he still showed improvement. The next burst was another year later when he started ramping up with tics from Pertussis...we quickly nipped that in the bud with a 5 day course. So, as Dr. k says and from what I experienced..with A PANDAS child..if they are symptomatic...you still SHOULD see results regardless of duration of illness. Okay....BYE BYE!!!!

Eljomom.. Actually, I have a PANDAS son who was strictly a ticcer! (and yes...he ticced A LOT at one point with variouus tics.....he had a sniffing tic that was every 5 seconds all day long) My other son had numerous tics (VERY bad vocals at one point...totally frightening)..as well as numerous, evolving motor tics..but, he also had ocd, anxiety etc. ....the works. I think what you MAY be missing is the fact that these are PANDAS tics.....not the tics of Tourettes. PANDAS symptoms respond to treatments differently, and to different treatments, than Tourettes tics do. Are you referencing the dopamine/steroids increase from a tourettes site? So, yes, ticcing was a big symptom here.....and like I said before...a 5 day burst stopped a big tic increase (at that time it was only tics that were increasing) in its tracks. Up to you...... I don't think tonsil removal is an "off the wall" treatment. And I really don't think that a short course of steroids is less invasive than IVIG...not by a long shot. I think I have said all I can say.....I think Kayanne makes a good statement for you......"if you are not comfortable with the risks of treatment.......accepting where you are is important in moving forward with your life."

Ya know...I don't think that any of us know what the other is talking about half of the time or what the intentions of posts are! That is the downfall with cyber communication.