eljomom

Just read in some notes i printed a while ago (dont have source) that the EM rash is a spreading red rash that SOMETIMES has a white border like a bullseye. I thought it WAS a bullseye. can anyone tell me more about this. my kids often get a large (size of silver dollar) red spot surrounding the location of a tic bite that itches for up to a couple weeks. Thanks.

I have been on pandas forum for dd7 for over a year. She still has tics, and some ocd, after a year of sudden onset, which was preceeded by minor symptoms. On low dose zith. for 7 months. Had only w.blot igenex. was "negative" but still had some + bands. pandas doc said "move on. not lyme" last week another of my kids, who has had some off and on throat clearing, sep anx and ocd over the years, started with major eye blinking, stretching, scrunching tics last thursday. she had been doing some evening up/touching stuff for a few months. and my son is doing the touching too. all 3 of them get tick bites over the years. my oldest has had less tick bites...she is kid #4, who had a year of one major tic that resolved. the latest child with issues has also complained of headaches off and on for over 3 years, and occasionally her chest hurts, throat, etc. finally convinced ped. to run w.blot, and only IgM Band 23 was positive (Labcorp). I am NOT one to be on the extreme end of treating Lyme without some sort of positive testing. I know, I know, it's clinical. But I do feel that some kids are being treated/overtreated with major drugs without ONLY a clinical diagnosis. And with Lyme symptoms mirroring so many other things, I hate to say, I'm not comfortable with that. I also know that there may be times when a kid was bitten years ago an untreated, and that regular Infectious Disease docs ONLY follow CDC guidelines, and don't believe in Igenex. So I am looking for any recommendations for a ped. Lyme specialist who is middle-of-the-road. I have only heard of Dr. Levin in Falls church, VA and Dr. Beals/Debbie McCabe in D.C., and I am not totally comfortable with either of those options. Are there any other docs who are medically based (not over the top integravite/holisitic) anyone can recommend? I live in Warrenton, VA, so VA/MD/DC is within drive for us. Thanks.

Hi Jennifer- Can you tell me who did your Lyme testing/co-infections? Also curious who Dr. B sends patients to for Lyme treatment. Thanks! quote name='eljay1' timestamp='1310658670' post='117000'] Just thought I would give a brief update on my son post ivig. He had an infusion with Dr. B. on June 22-23. A couple of weeks before the infusion, we got the results that he tested postive for a lyme-coinfection. We decided to continue with the ivig and are seeing a lyme specialist at the end of this month. My son has major yeast issues and seems to be allergic to almost all foods. We did pretreat with steroids and motrin/benedryl (I am very aware of all the risks with the steroid usage, but chose to use them anyway). DS did great with the ivig-- a little headache during the infusion, but overall uneventful. Post ivig, he continued to get headaches for a couple of weeks. He also seemed to catch a bug at the 2-3 week mark. His allergies are just as bad (if not worse--maybe because of the yeast/steroid use). He seemed to really improve with behavior adn energy level from the very start. We have had a lot of ups and downs since then, and with all of the health issues involved, I am not too sure how clear the picture will be for awhile. We are planning to continue to fight each infection, repeat ivigs, and tackle the lyme/co-infections as they unfold. Thanks to everyone who posts--I have found such helpful info on this forum! Continue to press on! Jennifer

Hi all, I am usually on this forum for my dd7. However, we just had my dd9 tested (through LabCorp) because she has had off and on headaches for over three years, along with occasionally saying her chest hurts. She also almost always has a temperature of 99.3, which I'm told just may be her normal. This has been for years. She does have some ocd-type stuff (evening up), etc., but so do all 4 of my kids. I did post on the Lyme forum, but wanted to post here, as there are many here dealing also with Lyme, and quite honestly, I am looking for a "voice of reason" here. Don't mean to offend anyone, but I'm just not a sold-out believer that every little thing is Lyme, and I DO believe (please don't take personally) that there are some kids being treated/overtreated for Lyme when it may NOT be Lyme. My question is whether IgM would mean recent infection, in which case, I would think you couldn't link the test with the symptoms, as they have been going on for so long. I am NOT one to go Lyme-crazy. I am one of the people who feel that band 41 alone is NOT indicative of Lyme, and that some other bands cross react, etc. So I would appreciate any input that doesn't lump everything into "It's LYme for sure!" just based on one band positive. Just trying to make sense of this test. I know many will say to test with Igenex next, and once we win the lottery, I may do that. We are tapped out right now with other medical expenses putting us over the edge, with a high deductible insurance plan, etc... Thanks in advance.

Hi all, I am usually on the pandas forum for my dd7. However, we just had my dd9 tested (through LabCorp) because she has had off and on headaches for over three years, along with occasionally saying her chest hurts. She also almost always has a temperature of 99.3, which I'm told just may be her normal. This has been for years. She does have some ocd-type stuff (evening up), etc., but so do all 4 of my kids. My question is whether IgM would mean recent infection, in which case, I would think you couldn't link the test with the symptoms, as they have been going on for so long. I am NOT one to go Lyme-crazy. I am one of the people who feel that band 41 alone is NOT indicative of Lyme, and that some other bands cross react, etc. So I would appreciate any input that doesn't lump everything into "It's LYme for sure!" just based on one band positive. Just trying to make sense of this test. I know many will say to test with Igenex next, and once we win the lottery, I may do that. We are tapped out right now with other medical expenses putting us over the edge, with a high deductible insurance plan, etc... Thanks in advance.

Deedee---I am so sorry and can imagine the frustration you are feeling. Wish I could offer some help, but bottom line here is that until they change the stinkin' name to PANS, many of our kids are not going to get help.

Is this a new summary with details of findings, etc?? Which link was it? I only saw the Autism One link.thanks!

DD7 got a plantars wart in February. It got huge. Finally took to podiatrist 2 weeks ago (was afraid to do anything for fear of worsening pandas). He treated with a topical chemical, and saw two other little ones starting and treated those too. They are all still there, and now there are 8 in all. All on the bottom of the same foot. Any thoughts how in 2 weeks, after treating one big and two little, why there would now be 8 or 9? Anything to do with long term low dose zith doing something to her immune system?

May be a silly question, but what the heck is MarCONS???

kimballot----thanks! I can always count on you to give me exactly what i'm looking for....a very detailed, educated explanation that speaks my language. my only other question then, is whether "once these antibodies cross they attach to nerve cells in the basal ganglia" means they attach and don't leave? Is that why some kids are chronic (like my dd)? That's what I'm really trying to figure out, why my dd doesn't "clear" on abx and have periods of no symptoms between exacerbations. And then, what works best for these chronic kids? Does IVIG work better with kids who clearly exacerbate and remit vs. chronic? Same with steroids? And once you use steroids, I wonder if there wouldn't be a "rebound effect" with the whole thing? Especially in chronic cases?

Okay...I am officially brain-dead. I go to bed thinking about this, wake up thinking about this, and pretty much it intrudes on every breath I take each day. Her Cam K and anti-neuronals were high, so i think that means autoimmune? OR does it mean inflammation? I know I should know this. I thought the pandas issues were from the inflammation IN THE BASAL GANGLIA due to the auto-antibodies. That inflammation in the brain causes the dysregulation of dopamine, etc..so I am wondering how inflammation elsewhere in the body (NOT directly in the b.g./brain) causes symptoms???

Hey kimballot---I keep seeing posts about allergies causing symptoms....could that be the "only" thing involved ever in pandas? I just wonder why my dd has not stopped with symptoms in over a year (well, since tics started....the ocd'ish stuff, etc. has been longer).

I thought I heard someone mention something about Dr. T thinking pandas may have something to do with histamine?? Anyone remember? Sorry, I can't keep it all straight....

Vickie--did you do IVIG or steroids? How soon after onset did you start treating? T.Mom--I should know this, but how long after tics/ocd did you try steroids? Who did 3 weeks? Thanks!

Thanks SarahJane. So is your pandas child currently in remission? Did/does he have tics? Our pandas doc (whom I haven't mentioned this to yet) does not think dd has Tourettes, but pandas, even with tics that don't remit since the biggee. Funny, we had snoring, frequent waking...had adenoids out. Was doing better (this was all pre-pandas sudden decline...even though some ocd was there). Now she's snoring a bit again (been almost 2 yrs since adenoids out). pandas doc said she should have her tonsils out too. Did that help pandas any?

Do titers mean active infection, or even carriage? I thought IgM had a rise 4-6 weeks after infection (but how do you know a "rise" if you don't have a baseline), and IgG was 6-8 weeks. Again....AFTER INFECTION. I just don't understand how people need to be treated for titers? I may be totally off here, but titers rise AFTER infection, right? It could be gone (I have been told that strep will usually clear on its own.....) but titers still be up?

I saw the myoclonic jerks, and my husband gets those whenever he is falling asleep. But this was when she was dead asleep, 3-4-5 in the morning......I wonder if it has something to do with dopamine signaling?

I noticed this before with my pitand dd7 when she was doing a bit worse. She's been a bit clingy again the past few weeks, and last night came into my room and got in bed with me around 2 a.m. She would kick, or flop, or just do some sort of quick, sudden movement--like a twitch or jerk.. it seemed like every few minutes...after a couple hours of this, I got up and left and went to HER bed. Just wondering what this is. Anyone know? Is it like having tics in her sleep?

Holy cow Wilma! Who ran that test? What doc and what lab?

This is precisely my fear of steroids. I have heard that it does help some, but I somewhere read that steroids increase dopamine, and increased dopamine increases tics (and I'm guessing trich would be affected too). Just don't get it all.....

I could have written this post! Same question....anxious for the answers. #3...if a healthy child gets IVIg...meaning "not immunocompromised", right?

Amy--did you ever do IVIG? Also, does your dd have periods of symptom-free (no tics)? We do not and don't know what to do/not do next either. Do you want a second opinion from dr. l or from someone else?

Hi all, Well, I'm doing my pre-Dr. L apt. freak-out. Basically, dd7 is mostly happy, sep. anxiety is much better, although lately starting to hang around a bit more...germ ocd is a bit better, but tics have changed. Now it's CONSTANT twisting her hair/rubbing hair, or picking her teeth. but honestly, i prefer that to the tongue thrust/mouth stretch/finger flick series. But today at allergist for her brother, TV was on (I've tried to secretly limit it b/c tics always seemed worse during TV), and I was of course watching her, and then I saw it. I hadn't seen the tongue one for a month or two. And it made me feel like I just got punched in the stomach. Literally sick. I am freaking b/c I don't know what to do at the apt. Is she severe? Not if you consider that she functions, enjoys life for the most part (with the exceptions of quirky things like I have to put on and tie the cletes because it doesn't feel right otherwise....wears same clothes day after day b/c they feel better....), etc.....but she has not stopped having tics/compulsions (sometimes hard to distinguish) since it all started over a year ago. On low doze zith over 5 months..... afraid it's not bad enough for ivig, afraid of steroids, plus they seem to only be temporary.....ugh. sigh.... I'm afraid of doing nothing, but I"m afraid of doing anything more. Don't even know what to ask for on wednesday..

pandas 16...what is mrt testing?

arial 95 did you ever hear back about what test showed immune response to skin infection? thanks!