Fixit

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. Let’s 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 didn’t 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…don’t 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 can’t 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? I’ve been trying to maintain BBB with turmeric and garlic. He had pex late summer after back to back salivary infections (don’t 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 can’t 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. I’m 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.

Not to hijack. is miniocycline a little better for the summer?

I agree and will go with ALL. And I don't get hung up on "PANDAS"...think immune problem. There are other DR's who believe this, but refrain from telling everyone, you know...politics!

You should post in which state you live. Get to a Pandas dr asap. Be it a working DAN PA NEURO or other DR, not the ones(that is mostly all DRs) who will not look or treat outside the information they are spoon fed. also known as transient tic My theory is that for some their immune system will finally quiet, or the infection will clear and then the symptoms will go away. For alot of patients that will take years or never. While young, like your child, i'd been very fortunate to get complete remission with standard courses of abx. If it works, i would suggest trying to get a longer course to make sure it is good and gone.

I agree with you completely in regards to use of steriod. We too had GREAT results with it, but the symptoms do return. And we too are following a lyme thing. LLM I did not know your boy was in remission !!!!!! that is so good to hear. At least you were able to reattain the position...you will do it again !!! Also keep in mind it is allergy season and i see alot of people coming back. DS has really ramped up. I am torn between allergies, though he has been receiving shots for a year and a half, weekly, still a month or more to go before maintanence...(no "allergy" symptoms....first time in his Life!!!!) but i stil wonder if it is causing inflammation in the brain non-the-less. yesterdays count 209 and will get into the 3000s Then there are the 12 year molars....1st one is in...Noticed second one about 2-3 weeks ago and seems to have come to a stand-still, with only 1 of the 4 buds to the molar that have popped through.

Yes ticcers. oldest ds only ticce first 9 years of life and completed remitted with standard course of abx each and every time. That is until last onset 4/6/09 of tics, woke up that way as usual....then remembered, he did pull hair for a month prior and that would come and go with allergy seasons, said it felt like bugs crawling under his skin....terrible disgraphia ... a couple of bedwetting incidents... Dialated eyes for the last 2 months and that goes off and on.....other that...just extreme ticcing we are still fighting the fight for him....we get to 90-95% at times unfortunately we are only about 50% right now....12 year molars and allergy?? he has been getting allergy shots for 1 1/2 years. ds 9 ticcer only...but he has always been concrete/rigid in his thinking. was exosed to strep in december and does remit with abx, but i've noticed that everytime he is off abx for 3-4 weeks they come back. ds 4 ticcer always had some sock and tag issues ....in tic remission 1 1/2 years.

I am sorry you are going through this. there is always hope. if you cant' get to one of the more known docs, maybe someone can pm you(private message) you a local doc. There are also some DAN docs who treat pandas. i don't know of any in minossota...there is a DAN we use in NJ and one in FL. Some of the DANS also have access to ivig if it comes to that. my ds12 got to the point where he would tic prior to ANY strep symptoms or cultures. went to get swabbed and came up neg...then i went back a few days later forced the doc to swab again and he then came up pos. i was very lucky during the early years, that ds would go into full remission on a standard course of either amox or azith. as of the last couple of years, ds also flares with tooth loss. Spoke with my dan today and we discussed the amount of bacteria in the mouth and flares. it may not be "strep" specifically and you may need to look for other triggers like mycoplasma pneumonia. Read as much as you can here and get to a doc who will work with you as soon as you can find one. when you get a doc they will probably also check for other things including vitamins and minerals and yeast. you have found a great site with alot of helpful parents. you and your family will be in my prayers tonight.

Cute

Corinthdad, thanks for sharing your thoughts. I like your theory alot. It is nice to have some fresh eyes on this and see it from a different perspective. At the same time i'm sorry your child is in need. This is a great site with alot of great parents.

I have not read the posts, but i am sure everyone is very helpful. this is a great site. Just from personal experience my dh has always had a minor tics and was also told it was chronic tic. I was more worried when my child started with "transient tics". But before we even had kids, i noticed that my dh ticced less, very very mild while on abx. My dh used to get strep 3 times a year for the 20 years i have known him.(i'm only 25 ) I do think he might have lymes as well, but he is not my focus right now. dh's tics did get better on long term abx. we had his tonsils out a year ago and he has not had strep in a year plus that we know of. Though he may be pandas from a purest point of view and would undoubtedly be an autoimmune condition at this point. I have not checked him for "lyme". He did grow up in the DC suburbs and says he can't even begin to count the number tics he has pulled out of his skin. Hopefully i will begin to focus a little on him this year. I believe Michael Tampa (an adult male) is recovered or almost recovered and is a great source of hope and information. I have hope that my boys will recover and that i possibley recover my hubby or at least improve him by a good margin.(he's not a good patient) I am sure you will be able to help your dh, but it might be a long road no matter what the final "cause" may be.

yeah...I think stuttering can be a tic My dd repeated words during one of her exacerbations. A dr. doing eye tests on her at the time noticed and said it could be a tic. She didn't do it on previous visits b-4 the exacerbation. I'm not sure but i think it can be brain fog too. Ds 4 had recent bout, maybe more of a stammer??? repeating the first part of the sentence, couldn't complete his thought and was stuck. We treated him for yeast and it stopped.

. I'm sure that i am defensive. Just used to having to fight the battle, up hill, both ways. I want to make sure that i and others can say "what about my kid..it's a little differnt than what your's looks like, but that doesn't make it not so" And i agree, that doc t's second theory sounds more plausible than the other dr's theory. I'm a Doc T fan!!! It's terrible what they are going through and that they are being dismissed with form of pyschosis. It is terrible and a crime. For me, the only thing that is not typicalin this case is the late age and the cluster. Maybe my kids fit doc t's new theory too, but with 4 different drs giving them pandas dx(i wonder if we are delisted now with the new paper out) I'm asuuming this may be part of Dr t's theory i think all panda docs a have to be vvvvveeeerrrrryyyyy careful going forward. Again the white paper, so much publicity coming fast and furious, and people wanting answers yesterday. I'm glad you brought up your observations so we can discuss it. I did not mean to sound accusational. Also,I thought stuttering was a very common presentation in SOT I still feel like we need to keep a wide scope on what the triggers are and how it can present(new name should be Infectious Neurological Disorder IND) or something like it and not get wrapped in the exact infecious trigger. If something out of the norm happens to your kid...don't stop looking for the anwser. You are very right, it could still be do to something released in the enviroment.

NGU, i am sure you are voicing what others might be thinking...but I do not agree! I will not let ticcers only, slip into the abyss. And if there is ANY ocd or skin sensitiviey or dialated eyes, that all might come and go. Or be sooo minimal, it is, or can be written off as quirk, or normal child behaviors. Oh, and espcially being a teen, an outburst would be pure teen behavior. Again, if any of these are occurring. If they are healing on their own, there systems may be healthier than our children's that were triggered at younger ages and they have cleard the infection on their own. That is one of the speculations with SOT. That some may clear this on their own. They just got a strong trigger this time and are a little run down from the long school year. It is still all speculation, and no one knows all the dirty details of this condition and i hope that all docs remember that and keep an open mind going forwad. I just need to stand up. Glad i peeked to see the current topics. Even current panda docs are going to need to cover their behinds with that new white paper out. I wrote a long letter about this that i was going to post but have refrained. It is going to be alot more difficult going forward, unless you really fit the niche, for my kids more than most. I always think i've said enough, but one more thing..... dh side,( where this comes from), dh brother had mild ocd for a short period in childhood and one aunt of his still has mild mild mild ocd. just that dh and his kids present with tics. The panda mom friend of mine, who was going to be orginal panda study..daughter ocd only(she has mild anxiety now in teens), son tic only. OK done.

i like this report alot better than the paper yes and i do agree that at some point it does become chronic and i like the idea that she gives a number but it could be higher maybe something like 3-8 times. I want all reading to know that my ds12 had complete remission 15 times with only a standard 10day course. Now with more info i would have kept him on the abx 2 weeks the first time or 2. After that, do at least a month. Correction ...if it is a neurological reaction i would make the first course at least one month. I just wonder if we ever fully eradicted a couple of the episodes that were 3 months apart. Parents don't let the number 3 scare you, but i would do everything in my power not to let a second episode happen!!! i also like the last statement “You have a treatable and perhaps preventable form of mental illness,” she said. “While we’re debating, these kids could be being treated.”

let me add, that for the kids who may not have received abx and are getting better.... their own system cleared the infection. ie why didn't this happen sooner in their lives....stronger immune systems... why now...infection changed in some way to make it more virulent... and why, as the mom mentioned, are more kids continuing to get sick....does the whole town have conversion disorder...really??? i'm around ticcing people all day..my immune system is fighting with all the stress....and let me say my stress level is a 12 on the rictor scale....

Drew rolled his eyes when he talked about pandas at the end!!!!!!!!!!!!!! Oh and said TS like symptoms…not TS….God knows TS is not triggered by anything. You just wake up with it one day! WHY!!!!!!!!!!!!!! Sharp said placebo, which helps the girls save face during recovery!!!!!!!!!!!! YAH, BY SAYING THAT IT GIVE HIM A WAY OUT AND SAVED HIS FACE!!!!!!!!!!

Thank you. I will print this. brief update DS12 has been doing well, trending slowly better, following a lyme, myco p protocol. Like last spring when we restarted with a doxy protocal at a slow rate, (but had to restop), this 3rd attempt (starting in the fall), took 12-16 weeks to see the first softening of tics. We do have flares with each tooth loss for about 5-7 days. His first 12yr molar started to come in just over 2 weeks ago. When it took more than a week for the ramp in symptons to resolve i started to wonder and worry what to do and what am missing. They started to resolve about 2 days ago, taking 2 weeks for the molar. ONly 3 more to go

when ds not in excab...nothing makes him tic.... when in excab the above items do intensify them I am a mom of ticcers only...for any doctors who might possibly remain open minded to the tic only children.

I just realized 3boysmom, that when i opened my statement I should have said "I am a mom of 3 boys". Just finished reading all the posts. I hope I didn't seem to direct it at you. I don't really have any opinion on Beth. I am glad she at least wrote a book that got published and maybe opened some minds. I am concerned when anyone puts perameters on what illnesses can do neurologically and physically.(Especially drs who i thought would be glad to take note of my documentation of cause and direct effect. But now will sacrifice one group of children because of politics(i'm assuming), in order to possibly save another). It will take ticcers another 10, 20 years to get the recognition that the accepted group will now get, even though they will still meet with resistance. I am glad your younger boys, like mine are well. I am sad for you and your oldest. It sounds exactly my situation. Even though i did know there was a direct connection between strep and tics for my ds, i still couldn't get help quicker because the drs dismmissed my connection each time ds had strep anyway(oh the eye rolling...i could smack someone) and i did not know to look for lyme or mp or other illnesses. Sorry again..it was late when i wrote too and i haven't been on the board at all...i was enjoying some normalcy.

Mom of 3 boys… TICCERS ONLY….and my heart is sooooo concerned and broken by this paper. I have not read all the replies. I hope that someone with closer connections can clarify to me that it is not putting the ticcers directly into TS and do not pass go!!!!!!!!!! Please!!!!!! I will gladly speak to any of these Drs directly if they will take my call. I will bring my kids to them if they like! DS 4 ½ still in remission 1 ½ years DS 9 in remission 1 year with a recent blip a couple months ago because of contact with a close friend that had strep. Luckily the mom let me know the minute she found out. Kept an eye on him and 3 days later he told me his tics were back and they started the day before. Thanks to the mom, I had the information to know what it was and ready to fight. I had zither on hand and dispensed immediately for 2 weeks. And he was fine within a couple days. DS soon to be 12 is still fighting the battle. We are doing well on doxy and combo to treat lime or myco…don’t really care what we are fighting…we were close to 95% again…. But have had a flare with each tooth loss and now his molars are coming in and things are ruff right now. What do these people say to my younger 2 going into remission very quickly still???? What do they say about the 15 times my oldest ds contracted strep and ticced only and completely remitted with standard 10 day course of abx in his young life??????(ps. To beat a dead horse…I was the one who told the dr’s 9 yrs ago ..hey, ds only ticcs when he gets strep…what does that mean doc!!!!!!!!!) Is 15 times too many and then it becomes autoimmune? I couldn’t get anyone to give me abx when ds started this episode at 9yrs old with his 16th or so, overnight onset (literally one day no tics, woke up ticking) It was more than a year later, when he was 10 that we had information it was probably myco p that the toddler brought home at that very time of onset and/ or lymes DS is in advanced math, an A/B student, VVEERRYYYY funny and witty, but he’s currently not doing sports as when his tics are bad like now, it is difficult for him to do regular stuff and he is in a lot of pain from the tics.    Sad…I was going to update a couple weeks ago on how well we were doing and for so long. It’s those darn teeth, 12 yr. molars! I always try to keep in mind that inflammation is probably also in the trigeminal nerve, bedsides the brain.

i hope this wasn't posted already http://healthland.time.com/2011/09/07/a-tick-borne-parasite-threatens-the-blood-supply/

i hope this wasn't posted already http://healthland.time.com/2011/09/07/a-tick-borne-parasite-threatens-the-blood-supply/

i've been mia...but i am mom of ticcers.. yes, imo tics can be caused by any of the above mentioned...once that portal is opened its a job to get it closed again and keep it closed. i will be back in a few days...but i'm sure some will give you ideas for swelling.....i really think tumeric is a great help for inflamation and it may help conteract yeast grow...still researching on that.... i just happend to see your post as i going to post some info i saw...

i've been mia...prayers on the way.

Thanks ladies, this certainly does help me through. Cleaned some space in my box. Very busy right with school starting in 10 days. I hope to catch up with everyones progress soon.