P_Mom

This was on Fox News this morning! So, it is getting national coverage....oh, what an opportunity it could be! I know "they" have been made aware...atleast people "involved" and it seems like they are blowing the possibility off...BUT, not sure that the parents have been made aware. Besides having a direct line to one of them....how can we be sure they are informed. How I wish I could speak to one of them....any ideas?? My mother-in-law even called me first thing this morning to tell me about the news coverage on Fox about the kids in NY with the tics. She said someone needs to tell them what is going on. I told her we are already trying! And just a thought...why just the tic manifestation?? Or are they leaving out the "other stuff?"

forget it....sorry...already posted.

It doesn't have to be a true allergy. A sensitivity/intolerance can cause it......to an actual food or a chemical in the food. My son also shows no allergies when tested for traditional allergies via skin prick. There is no way to test for salicylate sensitivity other than an elimination diet.

Smarty....Yes.....I found out by just tracking what he ate when he got the flaming ears. We then tested it by purposely giving him spaghetti (with tomatoe sauce) and BAM..red ears in about half hour/hour. We did this "test" about 3 times and were 99.9% convinced....then after the enzymes worked...it was a done deal. We began with the Feingold diet....but he was only reactive to a handful of things and that diet was much more intensive than he needed..but, it taught us a lot about what to look out for. Yes...he would also get moody and irritable with the ears...not always...but often. With the enzymes he was perfectly fine. I tell you I was shocked at how well those things worked. I was very skeptical but thought it was worth a try. They totally took his reaction away and he could eat anything. The enzymes also a yeast killer,(some people use it for just yeast issues) and, although my son has no issues with yeast...I thought that was good considering the antibiotics. (bonus #2) Also, they help soften/loosen stools and that was good because my son tended to run on the slower/constipated side of things. (which has improved over the years..but..bonus #3) No he did not take them regularly...just when eating offending foods...we had it down pretty good as to what caused reactions in him. He started out with grape chewables and he would chew a tablet right when he sat down to eat. We later switched to powder/capsules. "No-Fenol was developed by Dr. Devin Houston in response to parents' request for a product that would allow their children to eat fruits and vegetables without the problems thought to be associated with polyphenolic compounds. Initial response from many parents indicate that for many, No-Fenol does allow the addition of these foods to the diet without complications. All plants contain some degree of phenolic compounds. The phenol structure itself is ubiquitous in nature, and is actually essential to many of life's processes. Current thinking by many is that some subset of children on the PDD spectrum have difficulty in the processing of phenolic compounds, which may present as behavioral problems and physical symptoms such as red ears and cheeks, and dark circles under the eyes. While the basic mechanism behind this phenomenon is not well defined, it is thought that perhaps the phenolic compounds become "trapped" in some part of a metabolic cycle, presumbably involved with various detoxification pathways."....from the Houston Enzymes site Kimballot.....food dyes are in the Feingold diet and some contain salicylates. Not sayin' that is what your son was reacting to....just sayin'.

Tourettes triggered by strep = PANDAS That neurologist is a believer and doesn't even know it. Dcmom gave you good advice.

Oh My...YES! Bright red ears...yep...I have seen that in my younger son quite often. It was so sporadic that I swore it was something he was eating. Well....after keeping a food journal for a week or so and noting when he got the red ears....I would look back at to what he ate that day. There was always something tomatoe based, spices, peppers, juices, etc. We found he had a sensitivity to salicylates. After taking enzymes when eating offending foods...he no longer got the red ears. They worked great. It was much easier, for us, to give him the enzymes instead of having him avoid particular foods (like pizza at a birthday party...that would be a bummer) Anyway...it did wax and wane with PANDAS and he is much less reactive now...but I still have the enzymes on hand in the freezer. I gave him some last night when we had ravioli (tomatoe sauce) because there is a nasty cold running in our house and if he would be sensitive...it would be now. (we use No-Phenol by Houston Enzymes) http://www.salicylatesensitivity.com

Well, I won't put my two cents in on the whole CANS/Singer/paper thing because I am pretty sure most of you know where I stand and how I feel on the subject. But Bill.....I was moved to post and just tell you that your particular post sent chills up my spine. Oh how I understand and your words were just ....ummm......perfect. Also, Cunningham showed my a very detailed slide show she had put together comparing the two studies. She is so unbiased and genuine and is just simply looking for the truth. Her findings were very clear and obvious, even to me, that his controls were so way out of whack! You are right on about that....his study/findings disputing Swedo are truely worthless.

Oh...I get your sentence now! Takes us blondes a bit longer!

Okay...so I am not sure what is up with your first sentence ...but even when younger son was really very not well.....he had normal fever responses. Anyway....IDK. ....BUT, he did not get a fever to the strep that started it all! I wonder if he would get a fever to strep now? Don't really wanna find out though!

Hi Jill! Both of my boys have run normal fevers throughout their lives. My younger son just had one last week with a headache and runny nose. My older son's incidence of fever is indeed decreasing, but, that is normal with age as far as I understand. I can't remember the last time my husband or I had a fever....gosh..could even be a decade or more. So, that comment from Dr. T...IF he meant that there is a lack of fever response, doesn not seem to ring true here.

This is very interesting to me as my younger PANDAS son does the exact same thing, but, to a lesser degree.(his is not constant, the food is not actually projected and he has suffered no weight loss or dehydration) I have posted about it before because if was baffling. We would call it his "spit ups." It waxes and wanes...still does it from time to time. He will eat and then food will just involuntarily regurgitate up into his mouth. I can actually see his stomach just contract and up it comes. It is clearly not voluntary. It never burned. First, it was thought to be GERD...but, it didn't seem to fit and GERD meds didn't help so we opted for an endoscopy to see if we could find the cause. No inflammation in the esophagus (No GERD)...no bacteria/parasites...he was biopsied for just about everything...celiac, H.pylori, etc. Absolutely nothing. Rumination disorder was also ruled out. We came to the "throw our hand up in the air" conclusion that it is indeed linked to his PANDAS.....which is what I felt all along because of the way it behaved...and the fact that it would surface when exposed to illness, etc. WE don't think it is OCD related (he was mostly OCD but also a ticcer...the works)...we feel it is an internal tic. When the food hits his stomach (or wherever it needs to hit to cause the "spit up" ), it causes a sensory reaction that is implicated in tics, the stomach muscles or whatever muscles affected in there spasm...or tic, causing the food to be pushed up. Any muscle can be involved in tics. He has "bouts" of these spit ups. It can be once after eating or up to 5 or 6 times in a row. Sounds familiar..."bouts of tics." Could we be wrong?? Yep, but, there has been no other explanation found. He also had a barium swallow because of this. They just could not find anything...so, we all feel confident about this. For us, it is not a stressor because it is minor and not causing any damage or inflammation...no problems with growth...he is on no meds for it. However, I can surely see how it could take a turn for the worse as in your sons case. It may be extremely difficult for your son to control if in fact it is some kind of tic. Perhaps you can run this by the docs...who knows...just maybe. Either way I hope your son finds relief soon!

Hey Philly...... You're cute and all...but, I think I'll pass!

I stand by my post 100 percent! It was made without an ounce of sarcasm, etc. Those comments where I referenced "running to the hills....and the mininmal posts" ......well I referenced them because I thought they were FUNNY in the context of this thread and Danddd ending up being a man. You obviously don't see the humor in it like I do. You got this one WAY wrong! So, let's keep our comments about someone's misperceived intentions to ourselves before we tear down someone's post that was made in a purely humorous way......cause you may just miss the point! Peace OUT!

ON MY GOSH! You are a man! HAHA That strikes me as hilarious. The thought never crossed my mind. No wonder we hadn't heard from you in a day or so. Someone mentioned you probably went running for the hills or something like that after seeing the responses....also mentioning you "only" had ninety something posts. Well...nope...You posted...then checked in a day or so later. Just doing the man thing. In the meantime.....we Moms were checking the forum every hour since you posted...maybe even more. (you all know it is true) Also, no wonder you didn't read the whole thread!

I can tell you what I was told. Steroids are not be be used in Lyme patients because, if used long enough, they surpress the immune system and allow Lyme to "flourish." Don't know if this is fact or not. Post in Lyme and see what they say, Kath...PERSONALLY, with your Lyme results you posted, I would throw Lyme and Bart in the trash, never look back, and not lose a single z over it! But now, that is just me...what do I know.

"Also, if your child is CDC positive for Lyme and or anything else, I would not doubt the results. Especially, if two different labs have confirmed those results" This depends. Are they CDC positive for IGM or IGG? Big difference here. CHildren who have been sick longer than 2 months should have an IGG response to Lyme if their illness is due to Lyme...period. I know you get folks saying that chronic positive IGM and No IGG is chronic Lyme....body keeps recognizing it as a new infection etc. But, these are complete speculations. To me it seems they are thrying to figure out why someone with symptoms is only, consistently IGM positive even after being ill for quite some time. So, they come up with that answer. There is NO scientific evidence or research studies to back it up.....it is a complete guess. So, please be very careful and get second opinions if you are treating a CDC positive (or IGENEX) IGM only. Contact infectious disease docs...not just LLMD's....give Cunningham a holler...she has studied/researched Lyme and strep. Gather research, then make a very educated decision. Please do not rely on blanket, unproven statements. I, myself, am a chronic positive IGM (CDC standards) person. I was told I had Lyme by a LLMD. IV antibiotics (picc line)...years of orals for nothing. I am still, and will likely always be ...IGM positive for Lyme. After years of treatment...still IGM positive and IGG negative. It really means nothing in the event of long standing symptoms. All subsequent opinions I sought out from researchers on Lyme and infectious disease docs said I never had Lyme and should have never undergone the heavy duty abs and the risks of the picc line. Only the LLMD I saw said I had Lyme. IGM is so very cross-reactive with so much "stuff".....yeilds a high rate of false posiitves in patients ill longer than a couple months. It even says so on the testing. Don't ignore that. Please...if you are treating an IGM....please get educated , take a step back and start seeking out other opinions.

PANDAS16.....sorry to everyone...but, that make me laugh. "Frankly my dear...I don't give a damn." SFMom...I am truely sorry, but, I, for one, will not jump on board with your beliefs. Sorry. And of course, you don't have to jump in my boat. I feel I will be doing more harm then good if I do "get on board." "This could easily be congenital Lyme. They will be "LUCKY" if Igenex provides any indication of LD. There are equally tragic co-infections with LD that can be passed congenitally. A child with congenital Lyme often does not make antibodies to the bacteria because the body does not recognize the bacteria's as foreign. Sometimes, these individuals may need to pursue alternative testing to determine if Lyme et al is involved. I should know. This is a serious illness with serious consequences if treated improperly." These are the blanket statements made by LLMD's, and subsequently Lyme parents, that I was referring to in my earlier post. If you pay attention...these sweeping statements are made all the time in the Lyme community. Where is the research to back this up???? There is NONE. No research studies or good hard evidence that the above is even true...just a lot of "my LLMD said"......"this book said"...etc. Again, I believe it is an attempt to come up with something to explain the unexplainable.

"You know I've got people contacting me (and other Lyme parents) that have been sitting on positive or boarder line Igenex results paralyzed by information from PANDAS parents. For many of these people the PANDAS treatments have not worked at all (no positive result from hdIVIG), they are told to hang on or do more PANDAS treatments by some of you privately. "Potentially" more time will be wasted for theses children's recovery and that is sad. I am absolutely perplexed by this position. For some, not all it is so much more than just strep. This has happened not just once or twice but many, many, many times and I am not the only one getting these PMs requesting help. There a lot of people that read these forum and do not post." SFMom....just want to clear something up that I believe you may be missing. We have heard numerous times of the pm's you get from people needing help.....confused by PANDAS posts, etc. What I think you are missing is that many of us PANDAS parents get the same kind of pm's. Pm's from people totally exhausted from the Lyme posts.....pm's where they were wrongly led down the Lyme path and their kids did not get well.....some getting worse. PM's thanking us PANDAS parents who continue to post our stance on Lyme and our endeavor to help them keep their sites on PANDAS treatments. Pm's from parents paralyzed by posts from Lyme parents.....sitting on PANDAS treatments that could save their kids life because of posts from Lyme parents. Many, many have had failure with Lyme treatments....they don't all publicly post. And pm's from PANDAS parents who have said once they posted their PANDAS strory....their personal message indicator lit up like a light bulb from LYME parents urging them down the Lyme route and to hold off on life saving treatments such as IVIG and especially steroids. Wasted time for these kids recovery...and, yep...very, very sad. I, too, am perplexed by this position. When people post on the PANDAS board...they are looking for PANDAS advice. When the Lyme folks jump in...that is when they get all confused and hung up. The Lyme forum is a click away if they want Lyme advice. Right? Many, many of us get pm's....you are not the only one, as you stated, so, please don't think that pm's aren't going around to us PANDAS moms that aren't so, um, Lyme freindly. C'mon....neither one of us is naive enough to think otherwise. It goes both ways. So, I ask that you respect the PANDAS forum (yes, you can still send your pm's...nothing we can do about that)....and I, for one, will respect the Lyme forum....which I have been doing. Thank you. (See above in Johnsmom's post. She doesn't want to post here because she knows it will be hijacked by a Lyme parent. That shouldn't be. Lyme and PANDAS were separated to avoid just this. This is what we are talking about!)

yes, please find us anti-lyme moms on the Lyme forum trying to persuade people out of a Lyme diagnosis.

so..Momofgirls...your child does not have PANDAS?

I see the troops have been called out. "Regarding steroids, my daughter had three long tapers and we saw a huge amount of improvement but the improvements never lasted because we did not know she had Lyme" So, the regression was due to Lyme? how do you know? Could it be an autoimmune response? Steroid improvement in PANDAS is considered temporary....so....just because of the regression after "huge improvements" doesn't mean the child has Lyme. Really?? S&S...many do not realize what happened to their kids until it is "too late". Meaning the strep was taken care of by the immune system and the antibodies have subsided. That happens, you know? A positive swab is great..but....your child gets strep and the process has begun....but, you don't know it. Only after weeks, or more, or weird behavior do you do something. By this time, the strep is gone...in some cases...but, the autoimmune process is in full swing. Shouldn't you "herx" with Azith?? Jill...there is no answer for that!

What are these tests? PCR? If you read about it...it is not so great of a test. What other ones? How many on the Lyme forum are treating their kids based on these "other tests?" Not many...I gather. Most are treating on clinical symptoms or a positive (IGM)..or even negative...regular old western blot....regardless IGENEX or not. ( for those that are IGG positive....I am not referring to you)

Danddd....I am sorry this post got crazy. Worried Dad...you know I have the utmost respect for you ...but, I will beg to differ that the clinical symptoms of Lyme and PANDAS are blurry. Suddden onset....a totally different child after documented strep.....predominant OCD, tics, anxiety, etc.....suddenly....very unique to PANDAS...not your "typical" Lyme symptoms. Yep.....I already know about the many that disagree. Perhaps many Lyme folks (kids) are misdiagnosed...and are actually PANDAS??? (even when PANDAS treatments are not 100% effective) Isn't that a crazy thing to think?

I would like to hear of the many kids you know of that have been diagnosed PANDAS but then successfully treated for Lyme. Successfully to me means no symptoms...no meds...no regression when off antibiotics...no reactions to strep...nothing. Now, that is success.