Fixit

i just reread the opening post and wanted missmom to know i still expect to recover my child from tics...though being human it is normal to get down. my other 2 are in remission. and even though i was on it before. i have stuff at the ready and team of drs to work with to keep them that way.

i'm not sure, as none of us are, what is happening with tics. though i can testify to complete remission from them numberous times. so..did each onset dig a new trench a little farther and deeper? for ds12 it was an eye blink from 3-5yrs of age remitting until next strep. on my own i put the connection together. then i got scared at age 5, when the tic was no longer a blink but a shoulder shrug...and that's when i found this site. but i didn't really need or know more than this site anyway...though i read quite a bit....abx was given and life was great! so the first was simple tic the second i guess is more complex. but they were the sole and only tic that presented with infection. did the trench get deeper or longer? and so it went with complete remission. Until all H(*&^^** broke loose 4/6/09...I hate April...and in my notes ds always had an episode in late March...every year! now his tics are vocal, complex, and can be self injuring. does that mean the trench cut a new path entirely and it depends on overflow of enzymes, cytickoes, t cells, what ever, and information is just flowing through his body? Now, can i damn up, fill in, that trench, until time erases it and make everything flow back down the main river... Sorry just thinking this out loud. oh ps...when ds does get to close to 90%, they sometimes look like a habit and may just be that and we were actully 95% at times...idk pss...no eye blink since 5yrs of age no shoulder shrug since 9..if he does something with his shoulders it's quite different

Not to speak for P.Mom, but the distinction I see is that "permanent damage" means tissue has been destroyed, the nerve cells are dead. An analogy would be like the tissue damage in type1 diabetes, where the insulin producing cells are destroyed, so the body can no longer make insulin. But "pathways permanently altered" means that there is a stimulus-automatic response developed (learned). But, new pathways can be built and strengthened through practice. So, its like your 1st language is an automatic pathway that has been developed in your brain. But you can learn a new language- it doesn't replace the other pathway (1st language acquisition), but it can also become automatic. So, OCD behaviors can forge permanent pathways and become automatic, but you can still form other pathways that can be strengthened and also become automatic. Very nice peglem. i believe the same is true for tics. now i need to quiet that path enough so the "normal" dominant path can reestablish itself. I just think that the path on tics may be more complex or wider or deeper or any other analagy.

List of questions….if you can answer any of them or have thoughts about it, please let me know. I like to post on pandas and lymes sites as ds12 would have been poster child for pandas with strep and complete remission prior to this long episode. Plus the fact that my 2 younger boys still respond to traditional abx treatment for pandas. Trying to figure out at what point, when and why TICS go rogue! 1. I have recently heard the nystatin also kills probiotics. Should ds take nystatin separate from his probiotics? 2. Serrapeptase. I started ds on serrapeptase a couple days ago, 1 capsule 40k units ½ hour before meals….Sat or sun..i also started him on samento…2 drops in am with his thyroid pill a day before . Ds was worse yesterday(Monday), could this be a herx or..stress at coming back from spring break and crct testing here in GA? Today he woke up completely congested. Even though pollen has been outrageous here 9000+…he has not been congested this spring. It’s the first spring since he was 3yrs old he has not had “allergy” symptoms other than itchy eyes only the 2 days its was 8000 and 9000. I credit this to the allergy shots, singulair(which we stopped)but transitioned to quercitine/vit c and zyrtec. I didn’t give quercitin yesterday as I couldn’t fit it in schedule. Also I am now concerned as Q raises dopamine. I asked ds if he has been this congested at all this yr..no Was he congested all night, last night…no w/o prompting him..he said it happened after the second set of pills(serrap just by itself) so to recap…samento and thyroid 7:30…back to sleep 8 am serrapeptase. 8:30 down to eat and take abx and is completely congested Could the serrap make him more congested at first as its thinning out the mucus? Problem, like in the past and this was certain the baking ground for strep and a few panda onsets…..ds doesn’t drain. Will the serrap eventually help him drain too? I wonder if I can get this in him 2x a day Also am I killing his gut by thinning out mucus within the body and all the abx he is on? Not sure how his tics are today, but thinking they will not be great 3. Samento…could ds be herxing after 3 days of just 2 drops in the am???? We are supposed to do it 2x a day and work up to 5 drops 2x day. But again, I need about another 10 hours in the day to get everything in, you know a 34 hour day. We had tried it before but maybe I wasn’t taking good enough notes. Any thoughts…anyone 4. Has anyone taken time off from lymes treatment? Not as long as we had, but maybe a week or 10 days just to give the body(and us) a rest and not have to consider that as starting treatment all over again as in this is now day 1…again. How long can you take a break?

List of questions….if you can answer any of them or have thoughts about it, please let me know. I like to post on pandas and lymes sites as ds12 would have been poster child for pandas with strep and complete remission prior to this long episode. Plus the fact that my 2 younger boys still respond to traditional abx treatment for pandas. Trying to figure out at what point, when and why TICS go rogue! 1. I have recently heard the nystatin also kills probiotics. Should ds take nystatin separate from his probiotics? 2. Serrapeptase. I started ds on serrapeptase a couple days ago, 1 capsule 40k units ½ hour before meals….Sat or sun..i also started him on samento…2 drops in am with his thyroid pill a day before . Ds was worse yesterday(Monday), could this be a herx or..stress at coming back from spring break and crct testing here in GA? Today he woke up completely congested. Even though pollen has been outrageous here 9000+…he has not been congested this spring. It’s the first spring since he was 3yrs old he has not had “allergy” symptoms other than itchy eyes only the 2 days its was 8000 and 9000. I credit this to the allergy shots, singulair(which we stopped)but transitioned to quercitine/vit c and zyrtec. I didn’t give quercitin yesterday as I couldn’t fit it in schedule. Also I am now concerned as Q raises dopamine. I asked ds if he has been this congested at all this yr..no Was he congested all night, last night…no w/o prompting him..he said it happened after the second set of pills(serrap just by itself) so to recap…samento and thyroid 7:30…back to sleep 8 am serrapeptase. 8:30 down to eat and take abx and is completely congested Could the serrap make him more congested at first as its thinning out the mucus? The problem, like in the past, and this was certain the baking ground for strep and a few panda onsets…..ds doesn’t drain. Will the serrap eventually help him drain too? I wonder if I can get this in him 2x a day Also am I killing his gut by thinning out mucus within the body and all the abx he is on? Not sure how his tics are today, but thinking they will not be great 3. Samento…could ds be herxing after 3 days of just 2 drops in the am???? We are supposed to do it 2x a day and work up to 5 drops 2x day. But again, I need about another 10 hours in the day to get everything in, you know a 34 hour day. We had tried it before but maybe I wasn’t taking good enough notes. Any thoughts…anyone 4. Has anyone taken time off from lymes treatment? Not as long as we had, but maybe a week or 10 days just to give the body(and us) a rest and not have to consider that as starting treatment all over again as in this is now day 1…again. How long can you take a break?

You are in very good hands with Dr L!!!!!!! We use most of the main Drs and she pulls alot of weight. I know it is very difficult, but it will take some time. You just had the ivig a couple of days ago, so i am not surprised that you are currently flaring. TRY to find a peaceful place in your head. Or try to get distracted from it with some other activity or tv or music, if that helps. Right now its a patience game.

Jaco..Love and Blessing to you too! My children have different presentaions than you, tics are our main issue. I am sure others will be here shortly with some info and words of wisdom. We have not done ivig, so i cannot comment. I know that there is some thought process into the ig defecencies and hd vs ld. Again i'm sure someone will let you know the information they have. I do know ALOT/most people see flares with HD too. Sometimes the flare comes on quick, sometimes comes later and i think they can last a while for some patients, unfortunately. Again, that is just from what i remember reading. How long ago did you have your first ivig? Can you clarify the dates of your strep and probable onset? Has it only been a couple months of pandas symptoms? it is good that you were able to get help quickly. I wanted to let you know, that it is strong people like yourself, that also help the parents out here. It is good you are asking questions. Knowledge is power. I am glad that you have found a DR who will listen to you! That is a HUGE step for you and your future care too! Good work on your parents part too!

Laura, did you eventually try this? what where your results? have you come in contact with other parents that had benefitted from this? my DAN has mentioned it a couple times...thinking of adding it. it also says it can be found in peppermint. i was researching and ordered some peppermint recently as ds says he feels calmer and has less of a feeling to tic for a period after comsuming peppermint. peppermint is frequently used for digestion. i hope this can be a major key to ds' recovery...though i hope others might benefit too, i would like it to be our turn thanks

Dut ..is that 1st and 2nd generation? i think 2nd is ok???? i hope you can find link. thanks for the heads up

YAY...and THANK YOU for reporting to us!!!!

Sorry to hear about your Dad. I will say an extra prayer today.

on that note, just to add another self curing process, i'm sure you have heard about people drinking their own urine. the idea, if i remember correct, that you are actually illiminating what your body needs in combination of putting back the things you used that are good...i'm sure i got that right. drinking it has cured everything from ms to allergies to what ever. this was something i read a couple years ago and there was also something on tv around the same time, i think i'm pretty sure it wasn't tinkatured

i also forgot to mention that we just back from a 2 day mini trip. ds was worse. i wonder if it has something to do with the hotel room. when ds started this current 3 yr journey, he woke up from the first night in our hotel ticcing. mind you it was the perfect storm..all 3 said they didn't feel good on the trip down to disney, pollen count was the highest it had been in years...ds4 was getting over myco p from the month before and then this musty room, probalby dirty(how clean do you think they actually get these places, and how many really smoke in the room and sneak in pets). so we are home and ds might be a little better. I think i might need to get a infar thing for when we travel,,,which isn't often. we usually stay with family or friends. and weird thing is...even DH said.."lets not stay at dh's frinds house" as they have animals and are not nearly as clean about it as when we had animals. i felt like dh is finally not thinking i'm crazy with all of these things that other people get to take for granted.

I'm not sure if you are asking...but the shots are once a week. But because my ds is so allergice and pandas, i decided to use dr b in Ct as he is familiar panda kids and would be gentle going with his immune system. And i have heard of people getting a flare when starting the shots and have discontinued. Dr B start ds on uber low dose and i think that helped alot. it took ds 1yr 7 1/2 months to get to maintainence..that is every week folks. i think we only skipped 2 becuse of thanksgiving and once as a b-day gift because ds is just over it. we now get to skip next week (wha hoo).... and will be at every 3 weeks soon. now other kids might ok going right to maintainence at 4 week intervals...but we decided we have come too far and ds is too seneitive to jump that far into treatment. I am looking forward to saving $45 a month in co-pays just for that!!!! oh...as far as continuing...i think we will have 3 years at once a month to go. i have heard of people who need to do them again after they have stopped for a couple of years...ie my dh's brother. I was originally going to try sublinguals. i have heard good things about those and are becoming more available. you do those at home, every morning. but i have heard that the success rate is just a bit less than traditional shots. I just need to help ds the best i could to get a good result. you might want to look at those if your child is not as bad as mine. they cost a little more for the allergens, but you don't have to drive anywhere and there is no co-pay.....so you actually come out ahead.

SS and iowa, my heart goes to you both and i will say an extra prayer for your children this Easter Eve. I think i caught most all the posts. i was going to mention what micheal did about worms..i dont know that ds had them, but knowing how often ds would chew and ramdom things he found on the ground, i would almost doubt he didn't have some ohter internal parasite. over a year ago i put my ds on healthforce internal parasite formula...it did wonders for my ds as far as "panda" symptoms and his tood was a bit better. though we do not have what you ladies are going through. so besides hitting the parasites it is anti candida with die off control, so detoxes gently at the same time. i might do another round of this since i mentioned it here. i think you can do 3 rounds of this taking a couple weeks off before next round..idk. i really liked this product so much i have bought other by them. i have, when i have time, trhying to figure out what was so good in this product for ds..i think it was the wasabi..and was in search of other supps with this in it for cleansing and anti-inflam http://www.iherb.com/HealthForce-Nutritionals-Internal-Parasite-Formula-150-VeganCaps/19273 ALso, have you tried LDN. when ds was on this a year ago, i dont know if it helped his pandas, but w/i a couple days, he had a blue bird on his shoulder.."good morning mother, how are you today!"..whaaaatt...."isn't today a glorious day"....whaat?. where is my typical spoiled kid.... again ds does not have the"rages" your family is dealing with. anyway i have heard that alot of people get the same response to ldn for their kids. our dr just asked us to restart to see if we get something from it this time in regards to his "sot".. as you know it is difficult to know if it is working when you are throwing a thimbal of water on a fire

We just had our first full round of maintenance shots today...i am hesitant with his c vial to go a full 4 weeks. So i am going to do c again in 2 weeks...do another round of full maintenance 2 weeks after that... Then try to go 3 weeks between full maintenance for a few rounds and then into the 4 week interval. in answer to your question..... for my ds...he NEEDED allergy shots. It was a very difficult decision, but based on dh family history of what i have observed with them, it was the next logical step. ds allergies are just too bad. We had tried every med in the book and it was like using a dixie cup on a fire. So..i carefully started with singulair. Ds did not have any adverse reaction that i was aware of...i watched vigilantly for signs of ocd or depresstion... However, i did not correlate singulair to ds' tics. i felt like the allergy shots may have even decensitezed him from being so hyper allergic to everything he touched...he seemed to take the edge off the first few shots. Lately i was wondering if the shots getting to the highest concentration were now making him worse. So, what i did, after posting to the board and getting some good responses was. Continue the shots...we were to close to maintenance to stop now...and kept in mind how he was at the start. Slowly, over the course of about a week stop the singulair.....i would say that was one of the things that helped ds get better recently. I noticed he had more of his "allergy" symptoms appear, though not as bad as prior years by far. After reading the threads on h1 and h2 blockers i decided to give zyrtec anouther try. Ds is already on tagament, so that would cover h2,,,you can try pepcid to cover h2, the two of them also work alittle different. if ds wasnt' on tag already, i would try the pepicd.... anyway the zyrtec did just what we needed it to do. And it seemed, since it does work different than singulair that his arms reacted a little better once we started the zyrtec...the dr even asked if we did something different with this round of shots. i told him i just started zyrtec that morning about 30 minutes before the shot..ds c vial was always brutal on him.. in summary..if i were you...jmo...i would start zyrtec and pepcid 3 days to a week prior to starting the shots to go give his system a little prep time.(i had started sing about aweek prior to shots...but now that i think it can also effect tics i would not suggest singulair...unless all else fails, then try) for us, i am glad i have done the allergy shots. it took ds more than 1 1/2 years to finally get to maintenance...i am praying that we are on the home stretch with his recovery

Again i have not read everything. But i am happy, though it was short lived, about your few days of bliss. NOw you have a goal you can shoot for. i agree with the ibf for a few days....i recently did this with 2 of my children and it did help. even though i am an old timer, you can forget some of the basics, and my family here helped to remind me. we are not 100% but ibf with a few other things took it down a notch or 2 ..and really helped my middle ds. i too have a good dh...but there is so much with this thing, that it is draining. you need to find couple of the good articles, and/or threads and force dh to read them. my dh has said, well cant' you just tell me what is in them. NO, i have summarized alot. I NEED YOU TO READ THESE YOURSELF. So they don't get the info from you and can seperate the info from you, from your son and into the condition. YOu're doing great. Just hold on

Good to know... i wonder as part of my conspiracy theory...just like coconut oil got the bum wrap..if natural statins are good for you. same as avacodos have alot of fat, but the good fat. idk just saying... cant say we've been consistant on the ry rice, but with dh job he travels, so sitting on planes, eating out...i hope it's helping.

Ohh...weird coincidence...just started cooking hubbie some lunch with saurkraut (haven't eaten it in months!). if you 1/4 the cabbage and boil...it is good with a little apple cidar vinegar on it,,or maybe a little salt and pppeer if needed...but salt is counter intuitive i think... her is link from mayo clinic...of course there is a disput with pharmamcutials...they think it is a drug.....they are missing out on $$$$$$$ http://www.mayoclinic.com/health/red-yeast-rice/NS_patient-redyeast

Have not read all the posts. Do to hubbies higher than normal cholesterol levels we are using Red Yeast Rice. mine was also slightly elevated last check. i need to up my saurkraut..cabbage helps too. but in mean time till we get levels checked our dr suggested this and i have read good things about it. it is suggested to take at night, before bed when most of your digestion happens. Gettting levels checked soon..i will try to remember to update.

i wanted to wait to see if the pinkness was from ds.. i checked a couple times today, and there is a small, pink, prick, bite mark? or like if a thorn stabbed you while you were trimming the bushes. we did take a picture of it today. So...do i still wait untill monday to call the md?

Thanks for the posts. ..alternating and pulsing wine as prescribed... per the web site listed...it looks like a lonestar female. and now that i am sure i a know what a nymph looks like...ds12 had one on him, that he said bit him when he was 4ish.....i remember he was buckled in the car at the time and i said noooooo...that's too small to be a tick..... he was aware of ticks as we did tick checks every night after playing...yes he had ticks on him after playing in a mowed yard, w/o a single bush or tree..in a neighborhood with sidewalks on both sides.....i would think.????..how is this possible????...are they just in the mowed grass??????we kept the grass short and kept the kids in buzz cuts because of the ticks...we lived in PA at the time. And i didn't win the mega millions...so i will not be hiring a private team of doctors for all of our medical care, a personal chef to make decisions on what to make that is healthy and kid desirable.... So i will continue to be here at ACN, having to ask questions that i'm sure have been answered a million times that i will forget the answer to.

Susan,,,so happy about your recovery. I'm glad you and your girls were able to enjoy a wonderful day together. A little soreness tomorrow will only add to the details of your story of your great time together! you know...battle wounds.

is it ok to alternate white,red, white, red..i am indecisive right now and i might need a whole bottle....only 1/2 of each color left so monday is ok??? i have to look at that .)*&^ thing in the zip lock all weekend

So...he is 4yrs 9 months...getting ready for a shower(new thing for about 2 weeks or so)..He's a big boy now!!! .he cried " awe..mommy.... that spider just bit me"and started to cry more dh had just come in and said a spider bite isn't good...let me see...dh said that's a tick!!! the back of his leg was a little pink...but i'm not sure if it actually got to fully bite him or if that was from him scratching it....the pinkness looks gone????? What do i do next?...i know i should know...but i am pandased out...no more info will go into the 3 brain cells i have left. We found the tick about 8pm or so...got the shower and put him down. It is Friday night. Do i call my lymes dr and go from there? I have little faith in any traditional dr's or clinics. I'm thinking abx for a couple months??? Do i call now at 9pm on a friday night? PLease let me know what to expect from a llmd in regards to this and a 4yr old. I litterally was watching the news at 6pm today...which i never do(i have enough drama) and they said watch out for tics this year as it will be bad, since we did not have a cold winter or any frosts..i am in GA