Fixit

i have not read your other posts. and i'm not sure how often it is mentioned... but make sure the zithe is white. there weird thing for my son...(back during times of full remission, when thing were very clear cut).. ds would seem better tic wise within 24hrs, untill full remission w/i 2-4 weeks. however, w/i the same 24 hours, untill i stopped the zith, it seemed as though someone had let 3 trapiez artists into my house,(he was the only kid during the first few onsets),running, spring boarding off of anything, upsidedown, litterally bouncing off the wall. i would notice w/i day of stopping the zith, though a couple tics day might occur till they stopped, the circus act stopped w/i about 2 days. after some research i realized the dye was effecting him. (the dyes seem to be worse when in liquid form..i guess they hit the system faster/) note that when ds is not in episode, i see no correlation with any food items. i do know better and as a house we do zero artificial, colors, sweetners, and are about 50% orgainic $$$$$$$. i think once the barrier is closed it cant effect his brain or so much less. but again i know better now, in general, and i try to do better.

this is an older link that has come through the posts i think there are a couple more,,,i try to find them later http://www.pedneur.com/article/S0887-8994(04'>http://www.pedneur.com/article/S0887-8994(04)00034-7/abstract http://www.pedneur.com /article/S0887-8994(04)00034-7/abstract for some reason it will not post again... put the 2 parts together in the url

Julia...i'm curious, and i've tried to read your past posts...and trying to peice your journey together.. but are you treating your whole family.... for lymes???? for chronic illnesses?????? i understand that you think mold may have been the trigger. how long did you live with mold before you discovered it? and i find my memory is getting annoyingly bad what state are you in and i dont mean confused, crazy or other finally would you pm me your dr that you are using for lymes?????

i will knock for you a couple times too!!! i wonder/hope this is your magic key...it sounds interesting...

Thanks Phas, SOOOO Happy for you!!!

I do believe it helped a lot, and believe it was synergistic with the serrapeptase & detoxamin (helped a lot by its own, but combination was better than sum of its parts). serrapeptase i had bought this maybe a year ago and can't remember who had recommended it or why. i think a DAN..but i forget the why. I see it might be good for inflammation..but with my Dan he always has a secret double ninja reason for it..i guess i could email....i hope it was him anyway...do you still use it? is it only a short term usage. are you using it as a anti infammatory, to thin mucus i guess, or for digestion? If i use it at this piont in my sons treatment..is it too early.. i did give ds a digestive enzyme today as i am reading an enzyme book and his vocals are coming in strong. could that have increased them? i guess he could herx from that right? is it ever too early to treat biofilms?

Yah that too.. I know we are all praying together. I constantly tell my friends about the wonderful community this site creates. The knowlege, the quick responses, the support, brain stroming and even the disagreements, that make us think more and become more innovative. If we all thought alike we wouldn't be challenged to think of other things and look outside the box or our box. It's all good....really this place is a God Send!!!!

I have some space cleared. Sorry..i sometimes walk away from the computer and leave everything open... so i wasn't actually here. But wouldn't be suprised if something was down on my side

For some reason the vitamin d disgussion seems familiar now, maybe lymes board..i can't remember..***&& any more... but here is an article that is a couple of years older than the other one..and says D may worsen autoimmune.. http://news.oneindia.in/2009/04/09/vitamind-supplementation-may-worsen-autoimmunedisease.html and when this article says: "Vitamin D is currently being recommended at historically unprecedented doses. Yet at the same time, the rate of nearly every autoimmune disease continues to escalate," points out Amy Proal, one of the paper's co-authors i think the reality needs to be inverted to what the 1st article i linked says.. something like, we are dosing more d because we need more d as we sit inside all day and don't eat well. so yes we are prescibing more d...but the autoimmune is there before we realize the D levels are so low. i hope my statement comes out clear. Melanie..i still can't view the article you posted

i was not able to open the article. But it is weird that i saw this article posted on Dr t's site.. vit D...gut flora and autoimmune conditions!!!! ok..this his having problems to this link too... try combining the 2 parts together http://www.jacionline.org/ article/S0091-6749(11)00350-2/fulltext yes, that works besides ds haveing horrible allergies.. When he throws up, 2 times during this 3 yr episisode... DS stops ticcing...i want to say completely...maybe like 3 times the whole day or 2..if that. I jsut don't know where that leads me. I sometimes think it was a fluke...or too tired to tick...but if you count how much he tics a minute...then it would be impossible to not tic for hours even if he were tired.. not trying to hijack your post...but seemed silly to make another vit D post

I litterally just read on dr t's site that doc k treated a 25yr old successfully... idk know how acurate the info is... idk what that means exactly, but if improvement was made or full recovery then that is wonderful news!!!!

these are not my findings just thought i would post them http://www2.ub.edu/farmac/recerca/articles%20historic%20pdfs/FelixJunyent.pdf http://www.ncbi.nlm.nih.gov/pubmed/7530878

Congratulations peg!!!!! I know it is difficult to not worry after all you have been through. For today, while things are good, just try to enjoy, we never know our path. Of course i have a difficult time applying the same information to myself.

trust me... I WANT To Lean with LLM TOO!!!! I WANT TO BE SO WRONG...and all of you can make fun of me and say .."nani nani nooh nooh" and call me a stupid head but you can't come back in 40years, then i would be right... i don't want to give you any time, because thats time i have to travel and fight for treatment for my boys...but if there is a change in philosophy in 2 years...i would love to get inundated with knuckle head messages I will pray that i am wrong tonight

I read this article as soon as it was posted. I thought, I must be reading this wrong. I thought, I will come back and look at it later and someone will point out that I am missing something. And/or, let someone else post what I think I am NOT reading I AM SO MAD. WHY ARE THEY FORFETTING MY CHILDREN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Is this Sophies Choice?????????????????????? Sorry LLM and no disrespect to you or all that you do for the children and the parents on this board…… I disagree…I think if we stand together, and dont back off with what we KNOW, pans can look like and waited 6 more months to put the proper white paper out, all the possibilities would be included, then fine tune the treatment plan from there. The fact is the experts are still learning. Now my family has officially slipped in the proverbial crack. It will be harder for even pandas doc to justify treating my children. And some here may feel better, since you are a mom of a ticcer, that you have the grace to see this path. I do not currently have that grace. My child, unlike yours, is not in remission. So I think you are currently in a better position to make your statement. It will now be another 10-20yrs, if its that short, that the ticcers come into the diagnosis. Now the &*&^% TS community has just added fuel the fire of how right they are and now we have to try to knock down even bigger egos. I think( I am not sure) that the problem with tics, is if they are the main symptom, is that they may not respond to treatment as well once it becomes chronic or autoimmune and it may take longer to heal. Thats why, even though it thought I was doing well with treating ds12 the minute I saw something and was able to get abx the 15 times of overnight onset( sorry to repeat myself, but I need to be heard)..I think that is just too many times. I now keep a supply of abx here; until I can get to a dr, if something breaks out on Friday night….and dosing ds9 with Advil has really just helped his current abx program. Again, I am not mad at you. I dont think I can be mad at any of the parents here. You have brought up a point of view that I think a few might be thinking…well at least we got some kids acknowledged. I just wanted to freely post for the other parents who want to say…well I am not okay with it. I hope you are right, and swedo or whoever, put out an addendum to the white paper and I just waisted all this energy for nothing. But the reality is that I think your hopeful analysis is wrong. I think shame on the drs who backed off of information we already have and know, and shame on the DRS and their egos for putting their pride in front of the health of people. And lets face it, just because someone has a PhD or DR in front of their name, doesnt make them smarter than a lot of the parents here, or a thinker and able to analyze conditions. In most cases, it means they can regurgitate information better than the next guy or gal!!!! Just to clarify my position..DS 12 did not have other symptoms with earlier onsets. There was some hyperactivity, ..I think it might have to do with red dye in the abxs. We are dye free now He had a couple outbursts or oppositional behavior with a couple episodes. But again I can attribute that to, if you dont feel good, i.e. strep, you might be cranky. Occasional dysgraphia with some onsets...again, not all (and I think I thought he was just being lazy and cranky, not realising he couldnt do it right…it would take a long time do some writing homework) Since the onset 3yrs ago, he has had other secondary symptoms come and go, over a period of months. ( examples: feeling of bugs crawling under scalp with trichotelanima, bed wetting, oppositional, hyper activity, neck pain not related to tics, eyes balls shaking/vibrating, self stimulating, blah , blah) I think you would have to be a detective to notice or correlate these..and I still question how much I can include these as they are not chronic. His perpetual secondary issues with this onset tend to be dysgraphia (as well as he says he cant draw anymore and he used to be a good artist), sleep issues and dilated pupils. But tic tic tic tic tic tic tic tic tic like a fiend. I apologize to any I might offend and sorry for the long windedness OH..ps..and sorry, because this is not going to be a popular thought... Cunningham test….as I appreciate that she is at least willing to do something, find some correlation, but…and this is just my opinion….. It is only showing that an infection is going on…thats it. And if it is to be used…the number dont correlate to whos pandas, ocd, ts whatever… So if you are above normal…ie 86 for instance, then you have an infection/inflamation, and should not be serperated in to ocd/pans/ts..it seems illogical even when i read the information before the 1st draw.... And I think if you are presenting with ANY of the pansSOT symptoms and are above normal,then you have pans and are fighting something....that would be a better reading of the test. This is from my personal observations DS first draw was 106…he was still in episode but better than he had been. He had JUST come off of taurine which has been noted to possibly decrease camk….. So ……of course ds could have well just fallen into the "ts" category…..what ever.... But as a tiger/panda mom, why was it not in normal range???...... not in range is not in range.... He second draw about 3 months later and he was flaring pretty good was above 160…well into "pandas" range That means he is just fighting more infection or has more inflamation ( just my 2 cents)

Hug coming across the net.. Obviously you know i can relate. And sometimes it is nice to put out in the univierse that you feel like pooh and that you don't want to be a grown up anymore. i thougth my middle ds was heading down the hill too with the 3rd round abx not taking hold...looks like someone who posted to my prior message about my oldest ds, gave me the idea to treat with advil for my middle guy and we (knock, knock, knock on wood) are coming out of it for him. So 2 of them back under control. My main panda kid, ds12, is my greatest challenge so far. he also just said he has another tooth loose,and remember he has 2 molars that dont' want to seem to come all the way out.... Plus all the other stuff i've been mentioning. You, like all the parents here, are doing the best you can, and sometimes better than the docs. it is hard, but try to find some time to not think about all of this, it will not make you any less of a good parent, and will rejuvinate you so you can fight some more. I know that is easier said than done!!!!!

Hey P.MoM.. I am so glad things are still going so well and under control for you. I'm not sure if you had been around as i took a long break from the site. I needed to step away. And luckily we had some really great times, some downward spirals, some pretty good times again and more spirals. Yah...idk know about the shots. heres the thing...he is about 4-6 weeks(i hope) from maintainence. it would almost seem like not taking the last class to graduate from college. I can't say i've ever noticed a flare from the shots. Trust me i was Freaking out at actually thinking i might do this to him. I spoke with momMD(not mdmom, 2 different people) about her child's terrible reaction to them. She too consulted with some of the top panda drs before doing it.(as did i). He had be tested 2 seperate times a couple years apart by 2 different drs. the 1st one was not aware of pandas. Anyway, both upon doing the skin pricks did not wait longer than couple minutes(as opposed the standard 15-20 minutes) to give some type of benedryl to ease his instant swelling, and reactions. the drs were shocked at his system Ds was in an ok state at time of first shots and i might almost say, but can't promise, that he almost seemed a smidge better 24 hrs after getting the 1st couple shots. NOw as the doses are getting higher, i wonder if you could be right. That the concentration is too much, we have to split a particular shot into 2, so that is 4 shots all together because of the swelling. even though we back down a dose sometimes because of his reaction.. the last couple of days he does seem a little better.???? Could that be from backng down the singulair and then coming off it completely, dr said it will take a week to leave his system, as it takes a week to build up. maybe i'm not getting the full bang out of coming off, as we had another breaking day for pollen of 9000plus. I am also doing some advil with him for a couple days to get as much as i can out of this betterment. We go for another shot tomorrow..i wonder if the weekend will be worse? Or as the count comes down, better? I also added in the last week, the busy brain formula, with gaba and theanine..i tried it first as usual, and it does take the edge off w/o sleepiness, and i actually feel more clear, as i am not worried that i am not worrying enough Oh and ds just said he has another loose tooth,,so that, plus 2 molars that don't want to seem to completely come out. So after that long dissertation...,sorry...how are your sons allergies doing? Is he symptom free. Or at least he is not having a "flare" from the pollen? This is the first year DS can see, breath, not choke, stay upright and walk, during allergy season...really so great..only the last 3 days, with the unpresidented pollen counts, did he have itchy eyes one day, and 2 days of a little snot. Last couple of days i did have him do a nasal rinse with distilled water and a rinse i got from the herbal store

Thanks bulldog..i didn't mean to leave anyone out.... I will try to keep better notes on any cycles...i havent been able really find a pattern, yet, ....but honestly, after 3 years of hard core, research, notes 3 to 4 times a day etc and still ney saying docs, traveling the country with 1 to 3 kids to have docs i can work with....and then the younger ones coming into panda dx...i'm just burnt....i am trying to reorganize and get ready for the battle again, no matter what i am fighting or searching for. I do have an herbal blend of parsely and garlic combined. i may have to research why i bought that... I have so many supplements, i let other parents try what i have to see if they might find benefit for themselves or their kids(stress, add, allergies) i'm alsmot ready to open my own herbal store 5 YEARS!!!!!! If that is what it takes...as long as i can continue to see improvement. I would like to pick your brain some time. On a good note..today is an o.k. day...so that is a little relieving.

Thanks dc and philamom, I never say never to anything. After all the Drs that said what i had seen was coincidental 15 times, i can't dismiss any possible thoughts for the future. With the burst we had a rebound He does respond beautifull to tapers, to 95% for a few weeks...but things did come back slowly. I know 1 time when ds was 5 he received a steroid for strep wouldn't go away. We had to carry him to the er as his body was in such pain. BUt his tics and pain stopped when with the steroid and a higher, new abx If DS did climb to above an 8 for more than a week, i think i would have thrown a steroid at him, just out of the humanity of it and so i wouldn't go insane. I did cut the singulair to 1/2 for the last 2 days and i didn't give him any today. So...i thought things seemed a little better. But as some of you may know, you see one thing, the child feels another. And that can be in either direction. I just asked him if he had a number for me....he said yah..6, no 5, no really maybe 4-4 1/2. I thought things did have a pretty good betterment. i asked him again, are you sure. Do you want to stick with a 5 to be safe...he said no mom, 4!!!!!! He said things feel weird at school????????????????????????????????????????????????????????????????? WHAT do i do with THAT peice of information??????? Do you think they don't keep the pollen out as well as i do? THey don't clean as well as i do ? MOld, other kids with illnesses, cleaning supplies? What? Do you think it could just be that the singulair is coming out of his system and he is just correlating it to when he was in school? Do you think it is peer presure? 12yr old stresses? He says things are just better at home.(but he loves school!!!) I am not happy with 4,(i would say 5 1/2-6 at least) but it is better than 8. We have seen in the last 12 months 1 and 2s for periods of time. I don't think i can home school...i can't even pretend i can think about that....OMG...but what a waist of possible recovery if i could possibly do that!!! I just started some advil to see if i can get a little more out of what ever is happening. i gave a 100lb kid 2-200mg tabs....i think you can do this for 3 days????? But if back to lyme thinking...we stopped bactrim on sat and started back to flaygl on Sunday..rotating the 2 every other week....idk THey were off from school today. So i guess we will see what tomorrow and the rest of the week brings.. i guess i should also call the school to see if any strep, mono, myco p kids were out of school. on another note, Not sure if anyone saw the news....Atlanta hit a record breaking high pollen count of 8164!!!!!!!crazy!!!!

THis is something i have heard too and wonder how do you know what the order is? Last thing you want to do is start from scratch and to it longer.

Ok thanks. I did not know. It is a front loader i bought last year that has special allergy cycles. I just took apart the soap area. I did not know to look in the other areas. I usually leave the door open between loads. I will look for the special detergent.... what if i ran a couple empty loads with bleach???? Thanks for all your great info. Looking to do blood work next week and will look into some of the other things you mentioned

Thanks that is a good thought and may i should go back to individual supplements...the thought of that makes me more comfortable. I am trying not to worry about the singulair, and i very much appreciate you and others bringing to my attention.

Thanks for all the replies. Thanks for saying Im a good mom. I know it sounds silly but those kind words do reach across the internet. I am not fishing for a compliment right now, but in truth, I feel like a failure. I hear of others getting their kids to recovery and I am still trying to find my kids locker combination. And now I feel like a complete moron after reading about singulair. I did look up the side effects and neuropathy didnt come up. I keep an eye out for depression and rages. One of my DANS was the first to suggest singulair, followed by my immunos advise, both of my neuros know about it. Can someone please come here and kick me!!!!! If it is from the singulair, will it resolve……being hes 12???? I do believe there can be side effects not listed. My thyroid gets affected by drugs that say they do not affect thyroid. Ds has been on singulair for more than a year as his allergies are so bad, and we had tried everything. I do think the allergy shots have helped, since he would be almost non-functional by now. I was only giving him ½ a pill for a while, but since allergy season is here I was giving him the whole thing, 5 mg. Do I have to wean him off…1/2 pill for a week or so…I WANT to stop singulair today. I will up the allermax and add more quercitin…as I think the allergy shots have us in an ok place. We need to check his liver enzymes soon and will be checking the MTHFR gene. He is on a multi…I used to do separately…but after seeing lyme dr in md…he suggested 1 multi vitamin so he can cut down from 30 pills or more a day to 25ish???? I wonder since its one multi if I should supplement with more b6 b5 b1 again….. I have ds taking idebedone/ubiquinol, and D3. After reading the great article someone posted about GABA, I thought we should give it a try. I found this product and thought it had a good combo of things and the Bs that ds would normally take. http://www.iherb.com/Rainbow-Light-Busy-Brain-Release-60-Mini-Tabs/29974?at=0 my dan thought it looked pretty good I tried it first, Wednesdayish. It is nice. So I started ds on it Thursday….I dont think this has anything to do with anything…as his tics have been increasing like I said and I started to write my post prior to ds coming home. When I can fit it in during the school week (ds is gone from 8 am to 5pm with just school, no activities) I give burbur, or thistle (I know it is a ragweed, but wonder if it helps like a sublingual would, cant say things are worse when I do give) On the weekends I try to get either activated charcoal, bentonite clay or a drawing formula in for detox. After a big argument I can get him into a mag/baking soda/apple cider (for the last 10 minutes) bath once a week. I just looked my washer and the soap dispenser does need to be cleaned which I thought of before Christmas but never did. And in our bathroom I see a weird line of mildew way up high, in a small vaulted area. Thanks for letting me know that Im probably a juvenile on the lymes path, and need patience. But now I am so worried about the singulair. Does anyone know if I am seeing something from it, if, when it clears out of his system????? I guess I will never know if singulair was ever a culprit, as he has so many other triggers going on. Found this on singulair…read the last of the set of 3 under this heading…it sounds like DS. One of his tics is always head involved. Would you recommend a doctor for tic disorder? Oct 2010 http://parents.berkeley.edu/advice/worries/tic.html Does anyone have personal experience with singulair and tics and the tics getting better once stopping singulair? If it is neuropathic, what can be done about that? Anyone have thoughts? Sptcmom, do you have anything or suggestions that would help with neuropathy? Also thanks for the confirmation on Bradstreet. I went to FL to his office years ago. Now that he is very close to me in GA, I have an appointment for the end of next month. Regarding DS4….someone mentioned lack of growth due to lymes? I guess that could be. I was contributing lack of growth to the steroids he was on that then affected him somehow and maybe gave him yeast. Now DH has had so many tic bites as kid he cant remember. I wonder if he passed it to me and I gave it to the kids. DH has not been checked for lymes. He does tic, but since long term abx, and tonsils out last year, he has been strep free for over a year!!!!! He cant remember not having strep at least 3-4 times a year, all his life. On a side note…dh went to doc last week for bronchial infection…dr said dont take abx script Im giving you,,,only if you feel you really need to fill it…but here is cortisol shot???? I wasnt there when it happened…on good note…he is almost tic free, if any…..!!!!!!! I dont have high hopes and expecting a rebound.(dh are tics fairly mild) Sorry if I ramble…once my mind settles down on one kid, it jumps to what I need to do for the next. I love this board and all of our healthy discussions!!!

Thanks for all the replies. Thanks for saying Im a good mom. I know it sounds silly but those kind words do reach across the internet. I am not fishing for a compliment right now, but in truth, I feel like a failure. I hear of others getting their kids to recovery and I am still trying to find my kids locker combination. And now I feel like a complete moron after reading about singulair. I did look up the side effects and neuropathy didnt come up. I keep an eye out for depression and rages. One of my DANS was the first to suggest singulair, followed by my immunos advise, both of my neuros know about it. Can someone please come here and kick me!!!!! If it is from the singulair, will it resolve……being hes 12???? I do believe there can be side effects not listed. My thyroid gets affected by drugs that say they do not affect thyroid. Ds has been on singulair for more than a year as his allergies are so bad, and we had tried everything. I do think the allergy shots have helped, since he would be almost non-functional by now. I was only giving him ½ a pill for a while, but since allergy season is here I was giving him the whole thing, 5 mg. Do I have to wean him off…1/2 pill for a week or so…I WANT to stop singulair today. I will up the allermax and add more quercitin…as I think the allergy shots have us in an ok place. We need to check his liver enzymes soon and will be checking the MTHFR gene. He is on a multi…I used to do separately…but after seeing lyme dr in md…he suggested 1 multi vitamin so he can cut down from 30 pills or more a day to 25ish???? I wonder since its one multi if I should supplement with more b6 b5 b1 again….. I have ds taking idebedone/ubiquinol, and D3. After reading the great article someone posted about GABA, I thought we should give it a try. I found this product and thought it had a good combo of things and the Bs that ds would normally take. http://www.iherb.com/Rainbow-Light-Busy-Brain-Release-60-Mini-Tabs/29974?at=0 my dan thought it looked pretty good I tried it first, Wednesdayish. It is nice. So I started ds on it Thursday….I dont think this has anything to do with anything…as his tics have been increasing like I said and I started to write my post prior to ds coming home. When I can fit it in during the school week (ds is gone from 8 am to 5pm with just school, no activities) I give burbur, or thistle (I know it is a ragweed, but wonder if it helps like a sublingual would, cant say things are worse when I do give) On the weekends I try to get either activated charcoal, bentonite clay or a drawing formula in for detox. After a big argument I can get him into a mag/baking soda/apple cider (for the last 10 minutes) bath once a week. I just looked my washer and the soap dispenser does need to be cleaned which I thought of before Christmas but never did. And in our bathroom I see a weird line of mildew way up high, in a small vaulted area. Thanks for letting me know that Im probably a juvenile on the lymes path, and need patience. But now I am so worried about the singulair. Does anyone know if I am seeing something from it, if, when it clears out of his system????? I guess I will never know if singulair was ever a culprit, as he has so many other triggers going on. Found this on singulair…read the last of the set of 3 under this heading…it sounds like DS. One of his tics is always head involved. Would you recommend a doctor for tic disorder? Oct 2010 http://parents.berkeley.edu/advice/worries/tic.html Does anyone have personal experience with singulair and tics and the tics getting better once stopping singulair? If it is neuropathic, what can be done about that? Anyone have thoughts? Sptcmom, do you have anything or suggestions that would help with neuropathy? Also thanks for the confirmation on Bradstreet. I went to FL to his office years ago. Now that he is very close to me in GA, I have an appointment for the end of next month. Regarding DS4….someone mentioned lack of growth due to lymes? I guess that could be. I was contributing lack of growth to the steroids he was on that then affected him somehow and maybe gave him yeast. Now DH has had so many tic bites as kid he cant remember. I wonder if he passed it to me and I gave it to the kids. DH has not been checked for lymes. He does tic, but since long term abx, and tonsils out last year, he has been strep free for over a year!!!!! He cant remember not having strep at least 3-4 times a year, all his life. On a side note…dh went to doc last week for bronchial infection…dr said dont take abx script Im giving you,,,only if you feel you really need to fill it…but here is cortisol shot???? I wasnt there when it happened…on good note…he is almost tic free, if any…..!!!!!!! I dont have high hopes and expecting a rebound.(dh are tics fairly mild) Sorry if I ramble…once my mind settles down on one kid, it jumps to what I need to do for the next. I love this board and all of our healthy discussions!!!

I need some hand holding…again. This is a long one if you can take reading all of it. Any thoughts, even if not popular, are welcome. We are all on a journey. Lets start with easy/good stuff. DS4…still in remission?….still has tag and sock issues…but that has been as long as I can remember. He was 75%tile in height until 1 ½, when he brought home myco p from day care and that is the exact time ds12 started this 3 year journey.(ds12 typical panda till that time…tics/abx/remission about 12 times) Ds4 was on abx and steroids at that time for a couple months, that was 3 years ago. We are working on his height since he had dropped below the 25th %; nystatin gave him a good growth spurt and armor for low t3. We are reevaluating another round of nystatin. Ds 9 was exposed to strep, the mom let me know as a heads up, thankfully. 3 days later ds9 says mom my tics are back….started on zith and tics gone in a couple days…ran a full 2 week course of zith. His tic either looks like a guy is going to blow a trumpet, or like a kissy face. 2 weeks post stopping zith tics came back. We started amox and again tics gone in a week, ran the full course as usual. 2 weeks after stopping, tics have now returned. Restarted amox a couple days ago…tics are almost gone again and we will run it for a full month this time. So, on the bright side he is in remission while on abx? Here we Go…..DS12 (b-day Feb 2012). As mentioned we have dealt with pandas since age 3. I was fortune until 9, to get complete remission. DS has horrible allergies and we started shots 9/2010 with dr b in ct, at a super low dose. We hope to be on maintence in about a month. DS prior streps would all be during the school yr, exempt one summer episode. But his allergy symptoms were debilitating by the end of Feb. every year of his life. I think he would always get another infection in March because of the constant head congestion just letting things fester. Though I was aware of my ds strep/tic correlation by the time he was 3, I didnt find pandas until he was 5. Prior to 5 I investigated allergies. I had heard, and I had seen DR Rapp on a TV show…dont remember which one. I knew that my ds could fit into this correlation between allergies and his tics. Dr Bradstreet has a blog and he shows how Rapp correlates allergens very similarly the way that strep reacts in certain kids (pandas like) Here is the link http://drbradstreet.org/2012/03/06/expanding-our-understanding-of-pandas-and-introducing-pans-microbe-influenced-immune-behavior-dysfunction/ Besides the weekly allergy shots..ds is on singulair 5mg. He is 100lbs According to ds, his tics are going up about a ½ every 2-3 days. Pollen count for Atlanta area is as follows, todays 2979 F27th 25 F28th 4 F29th 9 M1st 67 M2 102 M3 64 M4 33 M5 104 M6 40 M7 54 M8 67 M9 115 M10 51 M11 79 M12 142 M13 98 M14 209 M15 552 M16th 2979 I gave him allermax today. Should I up the sing to 10mg I cant keep him in a bubble…or can i. To correct myself his 1st molar is NOT all the way in…another 33-25% to go 2nd molar 20% out. One of my Dans says this is definitely an open source of infection. Here is his current list of meds.. Dan just added AMox and flucozle for one week , as of yesterday, to address mouth bacteria. Azith 250 mg Doxy 200mg Levox 25 mcg Tagament 800mg (secondary use, anti-inflammatory/allergies?) Singulair 5mg Rotating every other week Bactrim ss tab bid Flagly 250 mg Really concerned about ds gut. Though no known issues as of yet. I give a 5 bill pearl in a.m. with abxs And then a pearl and another 50-70 bill of probis at bedtime. Yes at one point band 39 ind Many months later, just trying to rule out lymes, 2 out of 3 dot blots positive Months later he got an 80 on IFA B burgdorferi …… =or > 80 positive…so I guess he is/was pos Cd57 was 16 last year when he was 11 Myco p iggs always in pos range…igm in normal range We started azith 8 weeks ago…he was just on doxy and flag every other week Then added Bactrim the week before last….this is his 2nd bactrim week. What am I not thinking of???????????????????????????? Tagament gave him a nice softening and when we doubled it was even better. We had a nice improvement just on doxy after about 14 weeks…once last summer that lasted about a month(90-95% or better) before he got a salavery glad infection (from fixing a cavity)….and another few weeks in January before molars started(same thing 90%ish). Any thoughts on it being herxing? Any thoughts on controlling allergies?...I mean really what else can I do. Thoughts on the molars? Ive been trying to maintain BBB with turmeric and garlic. He had pex late summer after back to back salivary infections (dont know if a week or 2 post abx was enough time to do pex) pex made things worse. Started doxy about 10 weeks post pex, at the beginning of October 2011. Did not get better till 12-14 weeks of doxy…if pex helped I cant necessarily correlate it. If I am treating lymes/myco p, I am expecting too much at 5 months into it. We did solely doxy till late Nov/ December when we added flagyl every other week. End of Dec added Tag Beginning of Jan added zith Feb upped tag 1st week of March added Bactrim every other week His eyes are mostly always dilated. Cigna covers pex for pandas, not ivig. Should I do at least 1 ivig? He is 12, and thinking I might have to pay out of pocket. I hear ivig is only temporary fix until next exposure? Does ivig help with allergies? I mean if it helps that, allergies are a huge part of ds problems. Im running out of fight. I am tired of being sad and worried. I want to be done. Ds tics were 6 yesterday and his tics are a 6 ½ today.(they might even be worse then that) It pains me so much to see him this way. His tics are like full body convulsions. Kinda start at his hips and roll out to a full head whip, gapeing his jaw. I see people stare at him when we go out. And they wonder what i wrong with him. He is so normal to me and the tics are only something interrupt the moments of him being NORMAL. Of course there is physical pain as well. Thanks for reading this.