Fixit

LaurenK, do you still feel the same about namenda today? if so what dose? is it based on weight? i don't know the dose in this survey http://www.ehealthme.com/ds/namenda/tic

Glad to hear you are having some successes! Regarding homeopathy...Stephanie2 is extremely well versed in it. She is also having great success with that path. She may have a couple of sites to investigate. Thanks for the update.

AMEN!!!!

I dont know if this is related. I was searching some other things and found this. I don't know if it's a scam. I also don't know if this has been posted before. A glutathione product. http://www.healthdiscoveries.net/parkinsons-disease.html same company as above…just a different page. But at the bottom it states the italicized http://www.healthdiscoveries.net/neurological-disease.html ASK US to send you reports from others who have been helped and have improved or recovered from: Progressive Multiple Sclerosis, Alzheimers,a Brain tumor, Epilepsy, Parkinsons Disease, Tourette syndrome, Guillain Barré syndrome, Lyme disease, Myasthenia gravis, Shingles and Post-Polio syndrome by using this protective protein.

just thought of this..duh... maybe his yeast is also a little better since he's not on abx anymore. no step, no need for abx, maybe helping to slow recovrey of gut...even though i cant get him to listen about diet, beer, and the need to conitnue probiotics!!!!

Hey ALex...thanks for the links. I was just about to post about the TA that my dh who has tics. AS you may recall and he has had chronic/active strep infections all his life.(i always thought it weird that he always had strep and i never have)(yes had my titers checked, but will redo just to be sure i didn't misunderstand my findings)(i believe my immune system is obviously way better) whenever he was on abx he always seemed better and i would tell him so. We finally had his tonsils out a 1 1/2 years ago. He was not on abx for more than 2 weeks post surgery...i should have asked one of my pandas dr to get him a script for a month or 2. But i will say that he is better than 6 months ago and better than 6 months before that. I think, as mentioned before, that he has a massive yeast infection that he has had forever do to decades of abx w/o probiotics. I am trying to get him to address it. The little i get him to do may be helping. he forgets, gets busy and travels out of state most weeks. it is difficult to stay on a regiement. I don't know about ivig only. I have greater hopes than that. It is probaby true, depending on what the trigger or dysbiosis is, that it will take longer in adulthood, as with most recoveries. (ps if anybody has lymes, its him, as he has had countless tics pulled out of his skin while liveing in the Reston, herndon, leesburg area of VA many years ago, prior to its development)

I have not read all or fully read the replies. Not trying to start a fight, and I’m not looking for anyone else to agree with me..as I am secure in my position. I NEED to put this out there. AND a heads up that this reads VERY BITTER…BECAUSE I AM!!!!!! I do not know what DR you saw, BUT as mother of 3 ticcers who have gone into complete remission with abx, YOU DO NOT NEED ANY OTHER SYMPTOM TO HAVE PANDAS/PANS/possible lymes. (THIS IS MY OBSERAVATION and i don't care if the top DR or the POPE says I am wrong)(I do love that even if the top pandas dr’s disagree with me…they will at least listen and not roll their eyes(I do have 2 neuro’s and other Dr’s dx my kids with pandas….but before that,(not that it would have changed my mind, it just makes my struggles a little easier) MANY DRs told me there is no understanding for TS and that I could not possibly have such strep/tic incidents occur) Ds12 who is not in remission currently(myco p was the new trigger), only showed ocd in the form of Trichotillomania that comes and goes about once a year with this last onset 3 years ago. All prior episodes were just tics. Same for my other 2 ticcers(5 and 9). You are the parent and need to do what you feel best. May the roads rise to meet you on whatever path to decide to take. But please do not be bullied or shamed by the "PHD" attached to their names nor the fact that you went to "YALE". They are all just people who are only allowed to look at certain parameters and are not here on the ground with our kids. Nor do they have the observational skills that I have as parent with a vested interest in my child’s wellbeing and health. (Nor will they listen to me because since I could not possibly postulate or correlate cause and effect without a PHD)(Can you tell I have a high distain for most DRs?) I have had many CLEAR CUT onsets of strep/tic scenarios, so for me it is easy to stand firm and fight the fight for my children. And the 2 times we have done steroids for my oldest have been small miracles that brings tears to my eyes as I type this, since they were short lived. I believe it was Socrates, (looking for reference and I will not be nearly as clear and concise as I should be) (this was in a recent documentary) how even though one person in a group of many, may be the only nay sawyer, does not make them wrong. It is difficult to stand and continue to go against what the"educated", or the "specialists" in a particular field, as you may truly respect their intelligence, you wonder how can you be right in your opposing view. What am I not seeing that they see? But that is what makes you smarter, as you question yourself, but come back to the same answers. Most will not question themselves, especially as others might start to agree with them. You will get ridiculed, abandoned, fired and you may doubt yourself, since group mentality is powerful and it herds the masses and the comfort that the masses feel in that in group mentallity. There needs to be contrarians to open the window to get outside the box that these DR's can't seem to get out of on their own, or out of the way of their own ego, or political affiliations with drug companies, the government or the boss. TS is just a particular child/person body’s way of telling you that something is in dysbiosis, an immune system gone wrong or into overdrive. As a mom of ticcers, please look into vitamin, mineral, amino acid deficiencies, food/environmental allergies, chrones, parasites, other infections and teeth, teeth, teeth!!!!! The list is long. It takes time. It may takes longer time to heal with multiple onsets, multiple triggers and age. You can definitely gleen great information from the other boards, ie lymes, ts, ocd, etc on this site. I AM NOT a Doctor.

Retin A is a derivative of Vitamin A. I am not sure that A or too much a is good for tics. Also, i'm not sure of your whole story but since this is the lymes section(i think crossing information is very relavant), if she is on doxy, she may be herxing to some unknown infection. Herx is commanlly talked about in lymes. Finally, being very familiar with PANS, she may have been exposed to some infectious agent at school. Even teachers could be carriers and not know it. There is also the concern of what the school building contains. So many possibilities.

i don't have an answer on most of your question... But i don't like the idea of milk of magnesia especially long term http://www.webmd.com/drugs/drug-326-milk+of+magnesia+oral.aspx?drugid=326&drugname=milk+of+magnesia+oral and check out the side effects tab too also takes away vital minerals http://www.livestrong.com/milk-of-magnesia-side-effects/ i also thought m of M contains aluminum here is what i found real quick http://www.webmd.com/drugs/drug-326-milk+of+magnesia+oral.aspx?drugid=326&drugname=milk+of+magnesia+oral&dmid=1207&dmtitle=ALUMINUM;%20MAGNESIUM-CONTAINING%20COMPOUNDS/GABAPENTIN&intrtype=DRUG&pagenumber=9 in relation to that med for epilepsy/ it mentions seizures. so if i conteracts that med..who's to say long term it would not do the same in depleteing what the body needs to make it effective. not trying to make you worry...just need to think long term here is more http://health.nytimes.com/health/guides/symptoms/heartburn/medications.html works as deoderant because of aluminum http://www.peoplespharmacy.com/2011/06/09/hot-enough-for-you-and-your-deodorant/ here is one that says there may not be a link....but my aunt used to drink MoM everyday for many years...and...well...the last part of her life was trying.... http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=99

I was going to mention about arthirits and viruses. I either read it, heard it, maybe my mom who used to read alot mentiond this, or maybe it was a theory we came up with. My Aunt(alive and in bad shape)and Uncle(passed about 30yrs ago from this)(we believe it was the drugs they tried to treat it with) on my father's side, have CRIPPLing arthritis. And when i think of other people we know in that area(when cities had different cultrual neighborhoods)(also a time, as i was raised, to live at home untill you saved enough money to buy your own house) there were ALot of people with terrible Arhtiris. My aunt and uncle always lived in the same house till he passed. My dad and other aunt had moved out prior to the onset of arthitis. Interesting huh!?!?!?! Nicklemma, will you have to stay on abx forever, or will there be a trial period in the future where you will come off them?

WELL...THERE YOU HAVE IT!!!! Thanks Eamom for bringing this to our attention over here. It might possibly make more parents aware of how we have stay strong in our own conviction of what we are seeing on the ground, and fight to find the REAL doctors who will listen to their patients and their observations... thank you. And Thank you PANDASNetwork for posting this on their website!!!! I am a Mom of 3 strep(infection) induced ticcers!!!!

I agree with LLM!!! I think people take yeast too lightly. This is an analogy of my DAN's; when treating the gut, or perhaps the whole immune system, think of it like wet sand. If you are scooping,(killing something) out, other things slosh in to fill the space or take advantage of that space. So if your abx is killing something, yeast will take that opportunity to fill in or grow more. You then wonder why he isn't better or why is he worse. Well you have created a new infection/problem. Some things need to be treated simultaneiously. I would probably try the diet at the same time. Fighting yeast isn't just about antifungals. Its what you are eating and it's convertion. Even if you don't go cold turkey, try limiting carbs and sugars to give the things you are doing a fighting chance. It just might take a little longer. People with simple candida problems, if you can call it that(meaning non-pans), treat for years sometimes to get it under control with a combination of herbals, abx's and diet.

I have not "studied" up on them completely. Yes helmeths do help. But i think all helmeths are not equal. From my understanding it is actually the toxins from the TSO's that are beneficial. Don't quote me on that. Or in reality, is it that the one breed devours the others.??????? And that is why, if TSOs work, you stay on them for life...i believe. Would make sense if they have a food supply,but a short life cycle, and cannot reproduce in our body.???? just a secondary theory i just pulled out of you know where. But i will reitterate, my ds12 has done fantastic on the parasite cleanses!?!?!?!?!?! A few weeks after stopping we loose ground????????

Notice these say "reported." Yes..besides not being reported, those not tested, and those without good testing easily quadroople the number. Now lets add that ticks don't understand boarders. Catching a ride on geese easily spreads it and i believe deer don't check for passports. If you think about statistics, the density of lymes isn't just do to more of it there... There is also a higher population of people, more people per square inch to be diagnosed. Then add that those in cities are more likely to follow through in thier health and not just let things go, they might be more inclined figure out what i wrong with them, not only because of thier thinking and up bringing, but also might be more likely to have insurance that makes it more affordable to at least find out what is wrong, even if insurance wont cover treatments.

Dh is adult pandas. Strep all his life (3-4)times a year till about 18 months ago. Per a known panda dr, was put on 3-4 months of zith untill we were able to get his tonsils out.(that was not fun)Dr insisted on dh doing this as his constant infections were not going to allow our house to heal. Hubby can't believe he hasn't had strep in so long. He feels it's like a miracle. His tics were roughly a 3 maybe 4 during active infection, and i would say they are a 2-3 now. I don't think it wll be overnigt for him. I would think if i were focusing on his health i could get him to a 1 or healed. I really believe that. I am not focused on him as he is has a full life, and a fantastic wife!!!!!!! When i get to focus on him, we will check for further infections. That will help the rest of the household, i know. He will probably have lymes, since he grew up in the DC area with countless inbedded tics. But even if that is not the case...i strongly believe he has a massive yeast overgrowth. Decades of abx for strep without probiotics, steroids and plenty of beer. So until he will take a little care on his own, my efforts will be fruitless. Yeast can cause pans symptoms. He has many signs of a chronic yeast overgrowth. If you do the morning spit test, (we do it as a family), his is the most disgusting thing i have ever seen. Myself and the 2ds's in remission, are fine(if you don't through ours out, you might drink it, as it is so clear). Ds12 who is still in episode..and therefore on abx...also shows yeast in his spit. So we have controls to compare against. Yeast creates inflamation. Besides watching what you eat, trying to kill the yeast, trying to replenish good bacteria, getting inflamation down needs to be part of the protocal(ie detoxing, turmeric, eating berries/cherries).

Well you know me..jmho..no such thing as transient tic. they said that about ds12 but each time we treated strep he went into remssion. No one belived my (a non-phd) could make a correlaton between an illness and a neurological disorder. Myco p was the final trigger for ds12 when he was 9 and we are still fighting for him. That same myco p was the trigger for ds5 (in remssion) but do to the steroids to treat breathing(i believe crated an unnoticed yeast issue) cannot absorb nutrients. ds9, i thought was going to be my non-pandas was trigger not by his 1st strep at age 8,(that is why it thought he was non-pans) but by the mono that came in about 8 weeks later. I guess the strep opened the door, anti bodies still lingering and the mono shoved it open.. The mono and the tics took 3-4 months to resolve for him. Unlike the strep that was treated with 10 day couse of abx, and seeing betterment in 24 hours and comeplete remssion in 3-4 weeks for ds12. I would feel remiss, if i did not tell you to tell your friend to step on it. when tics are the main/only component they can be a &%#%&*()^$!!!! to resolve if left untreated. The younger treated the better.

according to this...rare, but there!! http://www.aldf.com/usmap.shtml here's the cdc's http://www.cdc.gov/lyme/stats/maps/interactiveMaps.html

yes..my younger 2 have more of this. it is not constant. it revolves areound food texture, sensitivey.. not really worth mentioning. if it were another kid, you would just say that was the way he is. Ds12 can down the most disgusting things i give him. he is my hero!!!!! the younger 2 always "think" about what they are eating more. and they think themselves into gagging. but again nothing compared to what some of you have to deal with.

For Ds12..who would get roughly 3 episodes a year, he had complete remission between episodes.(strep induced...would have been swedo poster child) Either as he aged, or as more episodes occured, the tics became more severe simple tic..eye blink 3-5yrs old motor tic...shoulder shrug(eye blink gone) 5-9 years old vocals,gross motor, and chaining....9 years till current(and tics rotate, but are constant and varied)

Hashimoto's is hypo-thyroid. I tried Ala because of the benefits it has I felt terrible. sluggsih. Sitting up was an effort. I noticed I felt like something was weighing on me. Much more than my other nagging feelings of dealing with pans/kids. I couldn't put my finger on it(slightly depressed, burdened). I wondered what is happening, then i realized i had taken the ala. In my memory loss, i remembered i thought i read something about the thyroid. And you know, sometimes you buy things they sit there for a few months, then you think, oh yah....i should try that!!!!! I don't know if this is stupid, but just to be sure it was the ala, i tried it again at 1/2 a dose, and sure enough, same thing. So i have a bottle here, if anyone is interested. We should do a supplement swap site of the things we want to try or that worked for us or our kids. Ds12 is also hypo. Not quite sure if it is "hashimoto's". He and i are on levoxyl. ds5 t3 is Low. So maybe ala would benefit a High t3?? We have him on Armor, per my DAN and my thyroid dr, who is an out of the box (OTB) thinker...ie he believes in gf/df and a number of other things that a Dan might perscribe. I just came back from a "traditional"dr to get his thought on ds5 growth...and of course my hairs are on end(you know the smuggnesss). He says armor is bad, bad, BAD!!!!!! Let the t3 go, don't address it!?!?!?!?! But he said, if i got this right, armor might benefit a high t3? Armor, according to him slows or stops your own natural hormone production. I try to gleen info, whether I like or trust the dr's opinion or not. So now i have more research on his statements about armor.

I tried ala on me first. I have hashimots' I felt terrible. It really wacked my thyriod. It took a few days to a week to clear. Ds has thyroid issuues too. so i did not give it too him. Just though i would give you an adults experience who can articulate the effect. Interesting as i've recently read the few links about mom's autoimmune issues and pans. So the pans comes from my hubby's side...and i guess i had the other side of the key.?????

This is in regards to me, not my ds. ubiquinol(coq10) gave me a little clarity..ability to think my thought through. also using Busy brain to lift some depression agitation..and again clarity.(sometimes i only take 1/2 a pill) But, i am middle aged( by that,i mean 29 ), so you loose coq10 as you get older and obvioiusly having small kids, with an illness can bring on depression, and agitation, and constant interruptions, hinder full thought processes. So those might help, but my case is more enviromental, not constitutional(ie if you could fix my kids, i'm pretty sure i would be happier...hard to tell at this point). is your dd sleeping well? i find when i sleep well, my next day is much better in all areas. Ds was given something called Kavinace. He said it was the best sleep he has ever had!!!!!! only second night with this, but SLEEP is so key in good health. This also has some of the elemnts of BUsy brain. So i would be cautious not in double doseing. I do not take Kavinace. DS does not take Busy Brain. Everyone is different and maybe 1/2 of BB and a whole Kav might be ok...DEFINITLY ask a DR. if you think you want to try both. OH PS..the first time i took 1/2 a busy brain, i did get sleepy. it was mid-day.. and lasted a couple hours. Now it does not affect in that way. Kavinance is taken at night.

Scott smith is a very goodd PA (DAN) in NJ very close to DR T. DAN's have other modalities that can be of benefit. THis group also treats pans. and they do ivig in house as well. I believe that might be that case for drT currently as well. Personally like that i have a few specialist as they sometimes have different takes and different ideas. i always let each practitioner know what i am doing or have done even if it is not with that one particularly. THey know you are fighting for your child. "Full potential wellness" is the name of the center. depending on timeing you might be able to see both in the same day.

hey norcal, i have not fully read the replies. my ds9 is more sensitive and worried? than my other 2. So i have concerns and sometime have to deal with talking him down(out of being stuck) and something that he might be fixated on. It's not to the degree you are discussing, but it concerns me as i see it lurking around. I don't know remember the age of your ds. i don't know your financial situation. Can you get him to actively participate in searching for another camp or similar trip? Shifting the expectation to the future and out of the current moment of his sadness, from how things stink right now, which is a continuous struggle in life, and to the hope and excitement of good things to come. He can search the web...look at the different options also knowing that things do end, but other things begin. And sometimes we have to be patient. Maybe you can pose mowing the lawn as income to getting to that point. I may not have the best words to coincide with the process, but you may have ideas of what he responds too. Sorry you are going through this. I recently, w/i the last month or 2, saw a piece on another family where the mom could't swallow and such around her daughter. I wish i could remember where and when.

For some with tics..i have heard of flares with chlorine. Not for All. for ds it varies. obviously trying to live clean, chlorine would be a contrary toxin. per another friend with lymes that has been treated, they said after using bleach with no gloves..the joints in the hands/wrists, started to hurt that day and then the rest of the joints in the body started to hurt over the next couple of days. took about a week to clear. this person wonders if this was some sort of herx that some panda kids might experience from swimming in pools???????