P_Mom

Hello All! Well, my older son has just begun orthodontic owrk. He got spacers put in yesterday. He will have the works....spacers, palate expander, bands, braces. Yikes! I am a bit nervous because of reports of an increse in tics with such stuff (he is a ticcer when he gets symptoms) He is 10 years old and has lost all of his teeth.....doc says he is about 2 years ahead of the "normal" rate of tooth loss. He has never had a reaction to losing a tooth, or to dental cleanings. I am a bit concerned with sensory stuff because he has had some sensory related neck tics. So far, so good, but, we only have the spacers. Are there any PANDAS kids out there who have/had braces? Did you encounter any PANDAS problems because of it? I am aware of the risk of bacteria related increase like in dental cleanings...he gets a bit extra antibiotic when he gets work done...just like the dentist. I am also aware of some on the TS board who have increase in tics with braces, etc. But, I am wondering about PANDAS. Anyone have any experience? Also, can a tic be sustained?? I know they are supposed to be brif and repetitive, but, my younger son has been scrunching up one side of his face. It is a sustained action....his face will remain scrunched for like 10 seconds or so...then he will relax it and that will be it for a few hours. I see it maybe 3 times a day. Can it be a tic?? Very odd...I have never seen this before. THANKS!!! Kelly

I won't ask, but it must be something good! I'll keep you in my prayers. We saw a resolution of the few remaining tics for my older son after t&a when he was 7. (he is now almost 11) Scheduling t&a for younger son to be done this Nov. TAKE CARE! Update when you feel comfortable!

Don't know, but, my husband has taken Clindamycin a couple of times....never had to wean off it. Call your pharmacist and ask...they will know! How is your son doing post t&a?

Fixit....your son just had his tonsils out this morning?? How is he doing so fr? Hard to tell on day one! so, the ENT said they looked fine, but, when removed, they weren't??

Emerson, We talk about PANDAS/PITANDS to Jaylen's Mom because this is a PANDAS forum she posted on....it is to be expected. Also....we are crazy!! PANDAS does that to us!

Jaylen's Mom, I just wanted to say that I watched the show (even though I said I wouldn't ) ..and the end with your son saying how things are going to get better and "backfire".......and to "trust him" with a big smile absolutely brought tears to my eyes. That was such a strong, encouraging statement from a brave, adorable little boy! I did also read your post and I must say that one thing jumped out at me pretty quickly as a red flag. Now, PLEASE, I am NOT saying your child has PANDAS......I am just presenting something. I have no doubt you have done and looked into everything you can possibly come up with...however, the members on this forum are also right....PANDAS is not well known and many docs can give you wrong info. and dismiss PANDAS on findings that are not diagnostic of PANDAS (strep titers, etc). So many kids get overlooked that have PANDAS based on absent strep titers...it is a shame! We have to knock down doors and search under every crack for help/answers to PANDAS. Unfortunately! Anyway, when you said your son is "NEVER" sick...well, it is when a parent of a child with TS/tics says this that, in my mind, a red flag appears. It is impossible for a child to never get sick ( and, I am sure you were exaggerating a bit) but, if he is out and about in the world, he does indeed get sick and exposed to all kinds of stuff daily. What we are finding out is that a child's symptoms of illness with this disorder can be tics and behavior changes...that is it...no typical physical signs what-so-ever. As Dr. k stated....."look for the tics, behavior changes...that is your child saying they are sick." A great immune system can also mean an over-reactive system. There have been numerous times my sons presented with an increase in tics/behaviors when kids around them were ill....sometimes it took a bit for us to find the culprit, but, there was always one found somehwere. My sons would usually NOT show any signs of illness...EXCEPT for the tics/behaviors. I could say my kids "never" get sick, too...but they do....their response is just different. Also, interesting you say your child's tics increase dramatically with strep/exposure. (definition of PANDAS) Just something to think about. You never know! This is a PANDAS forum so you are gonna get a lot of feedback regarding PANDAS! It is engrained in our DNA now! We can't help it! Has your son ever had any immune-modulating treatments? I am assuming he has had an immune work-up? Anyway...thanks for sharing your story....you got one brave boy! Kelly

Personal opinion...a bigger, once a year event. Scattered about the country, like you mentioned. If we do it regional and smaller...we still have to travel, arrange for sitting, etc. Some folks can spend the day, a night, or the weekend. All East responders so far.......let's see who else may chime in. Just my opinion...if everyone wants to do smaller, etc....that is also great.

I am soooooooo in!!!! Been daydreaming of this for a long time....getting to meet all (well, some, I know not all can/will attend) of you and just chill! We so very much need and deserve it! I will not feel guilty about it....I have put soooo much time and energy into my kids, and, continue to do so...that I feel is will be justified and "theraputic." Please....let's not let this go. I say we pick the place/date NOW and begin planning! What about the Dad's???? So far we got Fla., CT and PA.

Fixit....a spike that bad in a PANDAS kid.....well..school is in...strep is around......there are strains of strep known to be resistant to Zith. Zith SHOULD handle the myco.....if I were you...I would try a different antibiotic, like a regular dose (or higher) of Augmentin or Keflex. Hope he starts to settle....I know how it feels.....I was a mess when my kid was grunting LOUDLY with a babbling low "voice" and hiss added on to it.

p.mom -- how did you treat the EBV? My doc put me on high doses of Olive Leaf Extract and also Valtrex.

Myself, and a girl I go to Church with, both tested positive for "lyme" 2 years ago.....we also both tested negative for all co-infections. (we both also had sky high EBV titers at the time)

Scratch the above about the allergies... they're baaaaaaaack! I was hoping they "magically" disappeared...no such luck.

Bmom....have you ever tried a macrolide? I can't remember. But, even if it didn't work in the past, perhaps he is dealing with an infection now that the Augmentin doesn't take care of. Just a thought.......also, how did the steroid bursts go? I have been tracking you for years because our boys are the same age and ticcers....no behavioral stuff...and they have similar presentation and low titers. That is why I am so interested in you guys! Have you seen Dr. T?

Are they actual sexual thought regarding sexual actions? Or, are the thought about men's "privates"..Is he finding himself "looking?" If so, I don't know how old he is...but, it is POSSIBLE he is curious as to what "men" look like.......if he is at that age........this is different than actually thinking of doing sexual acts with men. The curiosity of what they look like could be perfectly normal and just a phase. Just noticed he is 9...so, could just be curiosity...perhaps explore the thoughts further with him. (if you can)

BMom...my heart sank when I saw this post from you....how is your son...how bad are the tics? My heart goes out to everyone, actually!

Thanks! Does Bartonella have the whip-like tail?

Okay...so the co-infections of Lyme occur with Lyme? Hence the co....as in co-worker...someone who works with you?? So, how can you be positive for a Lyme co-infection and be negative for Lyme? Confused! THanks!

HLC high potency capsules by Pharmax (haven't seen it anywhere except the internet) 8 billion viable cells per capsule......one capsule every other day. You can take as capsule, or, easily open and mix in liquid....it dissolves completely with no residue or taste. They actually sell a powder that is apricot flavored. I have to buy capsules because one son takes the capsule, and, the other prefers me to open and dissolve it....they always have to disagree! http://www.rockwellnutrition.com 75 (8) and 105 (almost 11) pound boys....no yeast issues....3 years on antibiotics. (Augmentin 250 mg in am...probiotic in evening after dinner) We also have done Florastor on occasion. Interesting thing I noticed on the label this time I ordered it (I swear it wasn't on there before)....under risk information, it says if you have an immune-compromised condition, do not use. Anyone have any thought on why that might be a risk? My boys are both mildly IGG immune deficient...and PANDAS.....is that us? Anyone have any thought on why that might be a risk? I wonder...but, they have been taking it for years so I don't think it is harming them....just an interesting thing I read.

Thanks for all the response. Smarty Jones...I welcome your experience...that is why I posted this thread....I wanted to hear what others have dealt with regarding their PANDAS kids and the stomach bug since this is the first time we have dealt with such an illness since PANDAS started. Thanks for sharing!! Yeah...I really don't know what to make of it. We all ended up with the bug...just getting over it myself...I was the last to go down. So, my younger son is now 1 week post stomach bug and fever with no symptoms! His behavior is no different at home or school. He is really stable right now. I don't expect anything to come from THIS illness...it has passed. Same for my older son...no symptoms with this illness/fever. He is about 4 days post. He is a ticcer...his behavior has always been good, so, no changes there, but, also, no tics. The last time he was "sick" was in July. Well, he didn't actually physically get sick...we just saw his famous neck tic reappear out of the blue one day. Nobody was sick at home, he wasn't in school...we were perplexed. Well, we overheard the coach from my son's baseball team say that a kid on my son's team was on the bench crying from a sore throat! Viola! We found our culprit and actually breathed a sigh of relief! We did check a couple days later and the parents had the child swabbed and it was not strep. The exposure to the virus (we are assuming it was a virus) was enough to cause my sons neck tic to reappear.....that was his sign of "illness".....the tic disappeared in about a week as quickly as it came. I did up his antibiotic just in case! (and his tic did seem to settle immediately....don't know if that is just coincidence or what) Anyway...back to the stomach bug. Yes...Vickie....doing the "happy dance" that both kids got through their first illness since PANDAS started without symptoms...however, I am EXTREMELY skeptical that this trend will continue. Oh, how I hope and pray...but, we'll see this year......I really think it was just the type of illness they had that didn't cause a vamp. Oh how I'd love to be wrong. Also, weird thing..really weird...my older son has significant seasonal allergies. They are well controlled on Claritin and Nasonex (the nasonex has been great for him) He is allergic to several spring tree pollens, all grasses, and all fall weeds they checked for! (oh, and one strain of mold) He had his usual vamp in allergies in the spring, they die down in the summer, then, USUALLY, vamp back up in fall. I get notices sent to me automatically from the National Allergy bureau place (can't remember name) and the fall weed pollen has been HIGH for a bit now. I have been waiting for his allergies to flair so I can start to give him his meds (I hate to medicate if I don't have to)...I haven't seen a thing....so, this morning I asked him how his allergies were...he looked up at me with a big grin and said..."what allergies?" Now, what is up with that??? Sorry for the long post...been couped up today sick and just kinda bored.

From 2009 transcript of meeting about vaccines... "This is something too that is important for you to hear, because it is the discovery of how autoimmunity develops by antibodies that aren't damaging, they are signaling. They are signaling in the brain and they are causing disease." Dr. Cunningham I encourage everyone to read the post about the 2009 transcript on vaccines....Cunningham starts on 134...very informative.

I understand your concern...I'd be a wreck about it....I hate giving my sons 250 mg of Augmentin a day!

I saw that advertised Monday....I am choosing not to watch....I have enough anxiety in my life!

Okay.... 31 and 83 are Lyme specific...not sure about 93(I think it goes along with 83). But, they are marked as (IND)... which means there MAY have been something, but, they are not confident enough to say those bands are positive. In my opinion, if I got these results, I would consider them negative. You child has been with symptoms for a bit now, and, the IGG should be positive by now with Lyme...the IGG is negative, and, the specific bands are IND. HOWEVER, since you are on the fence about it are and considering a steroid taper...if the doc is not to far away and won't make you go broke....it would probably be best to go get it checked out. Make sure you mention the possibility of PANDAS, also.....Lyme docs have Lyme on the mind and may overlook other causes for your childs symptoms.

PMfry coke....it is negative. And, it is important to make hard and fast decisions when dealing with PANDAS...earlier treatment to bring down brain inflammation...the better. I don't see what difference IGG or IGM would make...either would be negative because both band are not lyme specific....she actually had no specific bands. Or, is there a suggestion that she got the Lyme test drawn during that small time frame where after 4 weeks the IGM can be transitioning to IGG.....or that it was drawn in the small time frame where not all the IGM bands showed up?

Yea! Nice, huh! I would do the taper with a peaceful mind! It may get bumpier the first couple days...MAY...but then, after a bit, a different child can emerge!