Fixit

i just posted on another thread..for those with tics, maybe this may be more important..

Momaine...thank you for taking the time to fill in the details... I AM SO HAPPY YOUR DD IS DOING BETTER...AND MAY THE ROADS RISE TO MEET YOU ON THE REST OF THE JOURNEY!!!

i'm sorry to go old school on you...but.. i remember being a little upset...not too much though, about not having a boyfriend my dad said go.to school ,get a dergree, get a house and then worry about boys...(we were very poor). believe it or not ...that did help...and i didn't have a bow until college...and like my dad said boys are like buses and they always come along.... if his pandas are under control..focus on that...and life will happen and the girls will be there...tell him to enjoy just being young and healthy!!!

so you are not back sliding...you are just trying to get thelast little bit gone!?!?! how many weeks since last(or your first)ivig thanks

I dont know if you are reading this...but quickly.... just before may trip...mentioned not wanting to be around a sick kid...i said ...i don't know if you've ever heard of it but my kid has pandas.... she said ...MINE TOO!!!!!! all this time wondering alone(other than you guys) i found another family to be quick...her youngest if freind of my middle... her 2 older kids have it..one ocd-girl....one tics-boy she was supposed to be in the study...not sure if/why she didn't...but she went to nih to meet....but maybe because she lives in ga both are doing great...the daughter did just have an anxiety attac...but i think she is ok...both are in HS... pm me i will try to connect you makes me wonder why 10 years ago there was more of an open mind and then a couple of years later it all shut down????

i haven't read all here...but see if you can get the steroid and do a taper..don't have to worry about reboudn so much and maybe that wiill set you back on right track

brandy ...how long has it been since ivig for ds???? love hearing this!!!! Suzan...how long ago was your other ivig... is she any better than before 1st treatment or just as bad..or no change.... sorry i don't remember..(espcially not being here for a few days and stories are mixing again)

i don't know if doc k changed his protocal on this but he told me origanlly up to 4 weeks...i would love to know luckily because i'm not sure i saw much at first and thing may have even gotten worse as that is when the vocals came in.... but days 21, 22,23 24 were like a miracle....(note..i don't think he was on abx long enough before starting pred and i believe yeast was a huge problem between starting biazin and pred at same time and many years of multiple abx and no probitoics)

Hi mom...i never caught your response on this...so you have heard of these sublinguals... there is an ent /allergy locatoin here in ga that offers them...so for me they are very accessible... do you know why the approval may take a while????... hate to be conspiracy theory gal...but...too inexpense and affordable how is your ds...what are/will you do for his allergies???? my ds are terrible.. did the ivig take care of his allergies???. is he still holding strong in general..i hope!!!!!!!!!!!!!!!!

Hey there Phasmid..out of pocket for the next week...on to Doc L next week..wish me luck everyone!!!!! how did you get your doc to go 5 mg...i mentioned it to Scott to do a fifth week at 5 mg and he said that the 4 week taper was enough.. today is 2nd day post taper..... to everyone...my general question/statement is...doc b doesn't think allergens cause the pandas reaction..its that everything is already inflamed and cant drain out something if it gets into the sinuses..... and for ds, he looks like he's been in a bad car accident every moring...starting slowing in feb..building in march and by the end or early april we would get an onsett be it from strep...(no pos strep culturees in past 2 years)or some other infection...so that would hold with his theory...(and maybe that is where ds got the myco p..as my 3year old was just tested and he had a myco igg also)so maybe that was what they had in april of 09...but sometimes i still wonder if it's not just purely the allergen once it reaches a tipping point thanks for everyones thoughts.....

He is as wonderful as the stories...i hugged him a couple of times been driving from ga to va to nj then..... to ct for the day... he was patient and kind..my sister went with into visit..my brother watched other kids in the car with a movie... my sis liked him so much...and we are tuff cookies from nj... anyway...DS has been doing !!!!!!!!!! on the taper...please pray it sticks and continues to actual healing.... so, ds almost presented with nothing in the office ....of course.... one thing he is pretty sure about and he almost has me convinced...is doing allergy shots????? ds came up with his 4 standard indoor allergies...cat dog dust mite and 1 other but the arm with the outdoor allergens was pretty much all highly inflammed except for about 4....(thats about 20 or more) so....doc says...it's not the allergens crating the pan/pits...its that his body so worn out from fight the allegens it can't fight the infection..and/or its that the infection gets stuck in the sinuses as they are not draining and triggers the episode... i pretty much buy it as ds did not start the tics until 4/6/09 well into the allergy season..though the highest count of the year...and everytime we did get an episode in the spring it was late march early apirll..... he said there is nothing in the shots but the allergens...no mercury, or thermiasal.... anyone have thoughts....

i have a few thoughts...i hope they are encourageing i am so glad for you...and if that is what is left, you will be fine... i am not saying this is true..but you may be compansating for his age difference....treat him like you would an adult and expect great things from him...and more... i feel like i was born old...i think partially true but aslo the youngest of much older parents and siblings and cousins.... second..i know it is hard..but he is 13..he will grow...and if he gets sad...let him know this is only a small blip in his life and better things are coming..... again back to me...i was outcast some because i wouldn't be childish and play child like games..or do mean things that children do..so in turn i became a target.... tell him to hold on and he will flourish..he can handle it..and like my parents told me...if they are picking on you then they are leaving someone else alone...you are strong and can handle it(this may not be really true for your son...but give him the confidence he can) and with that confidence things will just come to him and it may not be in high school...but watch out college!!!!!!

You guys are making me cry!!!!! seroiously..dont give up!!! be as certain as you can that all infections are cleared... and keep a VERY close watch on the gut!!! and this is tricky and complicated...as one goes in balance another goes out.. yeast, bacteria, fungi... check the hippuric acid.. once we got this under control things were a bit better. then....Please try the taper!!!!! Check for LYMES..and if not follow the protocal anyway....it may take longer...but...

as per KaraM notes on this thread http://www.latitudes.org/forums/index.php?showtopic=9047 they tend to be harder to get rid of..and my fear is the tics will be left as "oh well the have ts too" but the reality is they just have more sticking power!!!! maybe its the location in the brain!?!?!

We've done two tapers. In both cases, we started to see improvement within 3 days. Serious (50%?) improvement within 10 days, and 100% improvement by the end of the taper. After the first taper, we could see things ramping up a bit but we did a T&A 2 weeks later and pex a month after that and from there we saw steady healing. After the second taper, we enjoyed complete remission, even the brain fog, for a few months. But then things ramped up from a new exposure. We did IVIg shortly after. I love the effects prednisone have had, but I didn't feel comfortable relying on it multiple times a year. We felt we needed to try to boost the immune system with something stronger. If it weren't for the long term side effects of prednisone, I would've been ok using it as an episodic treatment. And how long from the start of taper till now...6months...9months...1year...i dont remember Can't answer this. Prednisone was part of what brought us full remission (once strep was gone in taper 1). It brought us back to baseline in taper 2 and that did not fade until re-exposure. But we have yet to enjoy 6 months symptom free because we can't seem to keep him away from sick people. (another reason we felt IVIg was our next step, since he is so susceptible). Thank you ....that is my fear too...not only sick people...but we always get an episode end of March begining of April...Height of allergy season.that very last week week when it peeks....he does ok feb, begining of march..and you can see he's fighting it..puffy eyes, conjestion...and then his body just gives.... if we could just make it through that week,2 weeks!!!

THANK YOU, THANK YOU, THANK YOU,...... what a wonderful story can i pick at a couple of details.. 1 was there any gap between taper and the 2 weeks of 5mg... 2 how old was your daughter then and how much did she weigh 3 so she finished taper mid june ish...and you had about 7 months w/o a relapse!!! 4 is/was your daughter on any propholactic abx??? does doc L think the system is in overdrive..and any thing can trigger it..and body on high alert...(as in, until you do pex) or does she think this could do it and eventualy the body will stop reacting this way?? i realize you may not know??? if your daught relapses again...will you do the same...or at some point and age do you need to go for more Thanks Kayanne

i know you've posted this before, but could you tell me again... how long from the time you started taper till you saw 90% or so, or complete remission..not sure if you are 100%??. did healing still continue after taper?? And how long from the start of taper till now...6months...9months...1year...i dont remember PS how many tapers have you done.. do you know how many tapers the speaking parent did?? Thanks

Thank you for getting back to me... Can anyone else fill in any blanks?

1...do you have to treat this stress esasperaton the same as others..abx..ivig?? can a steriod taper bring it down?? 2..we just started to have a little bed wetting, but waking up...but add vanco...we are have a weird coincidne..more later...does anyone know what the other thing was with tics.. 3 VERY CURIOS...again maybe my path is being laid out for my......for ticcers....PEX (solely)may be the only thing needed...is that was doc k was suggesting!!!.. 4...ds is almost 10 1/2..so does that mean he is over 10 or is that like a teeter point? Thank you for the info and thank you to anyone who can help fill in these blanks!!!

Agreed! Agreed!!

I Feel your pain...seriously!!!!! Neuros S)*&()*&^%%%$%%$!!!!!!!!!!! they say the same about my ds.... real quick...we did see a beautifull 4-5 days, 21 days post burst in March... I don't want to say too much now...we are on taper...and Please EVREYONE,, PRAY for my DS, or send GOOD ENERGY that it STICKS... i will fill in some other time... also first camk at 105, second at 160... going to see doc L early august and discuss the 2 very different results and not ruling anyone out, as i canceled my first appoint with her as i was afraid whe wound't believe me... Please try to let it out and get back on the horse!!!!! FIGHT with MOMMY Tiger claws...as someone once told me!!!!!

Since we have a big lymes thing going... we are seeing doc B on 7/29...i have my igenex test...will he address this and follow a lymes protocal... or do i have to still see a lymes specialist?

Thank you peg...for sharing all that you do with your child with us... i am sure your story will/is/are footnotes in alot of parents stories as we go forward in talking with doctors in figuring this thing out... And most of us here know the thing that you said "this may be small"...we actually know how huge they are... So exciting!!! God Bless

yes...for most of us there is pretty direct correlation to teeth, fill ings, loosing teeth, tmj, cleanings and exasperatoins... not completely sure why... bacteria flying everywhere...geting into new openings...??? also during these crucial years..your adlut teeth come in and maybe the trigeminal nerve which runs across your upper and lower jaw..bridge of nose, top of eyebrow and top of ears...and that nerve connects and runs into your vestibular.that goes into your neck/spine might be sending signals???

as you may know my ds main/only presentation is tics...any co issue pales in light of this and are so non improtant to his everyday life they may not even be a co-issue..(i would live with those as no one could would think the others are of any significane) anyway..my ds get by with ..."just can't help it"...so far so good, he is a total boy and things don't seem to bother him there will be times that kids will not understand.....but if you child tells them, that they simply have no control over it, but maybe might say(not sure if i would cause could back to bite them, on a down day)i wish i could stop doing this.... but for me it like blinking my eyes...try not to blink your eyes...and you don't even know you blink your eyes because your body just does it...its the same for me and my tic the teacher needs to have vigilent ears for a while till the kids get used to it and explain everyone is different...someone is tall, someone has brown eyes, you're good at math, that person cant' ride a bike and dd sqeezes hands right now...and tomorrow may be different....because life is always changeing i don't know if that helped any..