Fixit

Hello to all, I have been reading on this for several years as my son had an eye blink starting around 2 1/2-3. I’m concerned I let a doc give a vaccine a couple of days after a high fever. I did tell the doc about the high temp. I wonder if that lowered his immune system, then allowing him to get strep at the drop of a hat???? Also blinked with alleregy season.. I don’t have allergies so I treated for a cold. Could have been strep from day care. I also wonder since I still have never had strep or knew anything about it, did I let the first time or 2 he had strep go on too long before getting antibiotics?. Sometimes I hate myself.. But now I knew to check for strep as soon as he got sick and if he ticked. (would clear rite up) Then he had a bad bought w/ step for about 3 weeks over Christmas when he was 5? First meds weren’t working I could tell. Doc added another week and still no better. but by the 10-14 day his joints ached so badly we couldn’t even touch him. We went to the ER and they said it was from the penicillin. But I now I know it could have been from the strep, rheumatic fever. Can we test him now to see if its penicillin? It’s a good drug to have in your arsenal if you need, but we haven’t because of this episode. This is when the shoulder shrug replaced the blink and I got scared… Doctors say no correlation but tell that to the parents who can pin point to the day. That’s when I found Pandas I don’t face some of the challenges you are facing!? My son’s tics go used to go away after 3-4 weeks after the we started the antibiotics And the last couple of years it’s about (8+9) maybe this would happen 2 times a year for about 4 weeks... Didn’t necessarily test positive to strep but it was at the peek of allergy mid-Marchish each time. Eyes looked like they were punched, throat sore and swollen and even when the docs look at it were surprised it didn’t test positive for strep He would get strep at least 3-4 times a year. But this doc worked with me to still put him antibiotics incase it was some other bacteria. The role was gone in 2-3 weeks But I started to wonder if other things could trigger this. I didn’t know about pitands then. Through holidays till now, we have had many vomiting sessions and diarrhea run through the house and not 1 tic. I have a 2, 6, and (the 9 year who exhibits tics). So now we’ve had nothing for 5 months. I’m thinking we’ve passed it. He’s system is good and we’re done. PS tests high allergic to all pollen, grass, weeds, cats some to mites and dogs. Both dogs died a year ago…do you think that help reduce his bodies constant battle, you tell me? But on 4/5/09 we drove to Disney. The baby kept hitting his ear, so I figured I’d get a doctor as soon as we got there, to not ruin the whole trip. My oldest the 9er says “ mom my neck hurts and there’s a lump and my throat hurts”. So I had the doc check him also. Did short test, neg. Glands were swollen, nasal passages swollen. Could be nasal drip? He does have Terrible spring seasonal allergies! Woke up 4/6/09 go to Disney and he starts jumping and kicking his feet to his behind. 700xs or more during the day and I’m not kidding. I know what that is!!! Heaven help me!!! My heart is going to literally break!!! My sweet boy!! Being the mom I’m the only one who sees it! It’s not excitement!! It’s too much for that! He would have stopped by now!(ps crankiest ever..but when you don’t feel good you’re cranky) I was able to convince the visiting doc to put him on an antibiotic 4/7 as I’m crying on the phone. I make appoint for ped visit as soon as we get home and neuro 5/21/09.. Rest of the week was horrible. 4/9 we’re walking and I ask if he is alright and his eyes started to well up, and he said “mom it’s my stupid legs….they just won’t stop”. He was just tired having to constantly jump. He just wanted to stay in. He can be a coach potato too.. Vacation for him can be doing nothing. My husband and I gave him piggy backs some and offered to get him a wheel chair but he’s a trooper and just wanted to get going. Fast forward..Now his tics are morphing every day and here are some notes On 10/5 in car though I saw him make face…a smirk, flare nostrils and eye roll. Did it next day only in car 10/06/06 Wednesday and tried to hold face to make stop, long ride back from allergist 10/7 notice at kitchen table 10/8 noticed it milder and seemed more like a reaction …finger snapping and an occasional jump now and then. .10/9/09 good in morning…bad after school…got in trouble today at school… snippy with us…. Face smirk, with nostril flare really bad a lot of ticking….i feel sick…. 10/10/09 a ton of tics today smirk w/nose flare/snaps/flaps(maybe to end snaps)jumps (I think he tries to hold his face so it won’t move….i think I noticed this before)my heart is breaking 10/11/09 woke up a lot of jumps / a serious eye frow/move, eye roll, turning away I think he’s getting very aware because its a lot. Puts head down with eyes closed for several seconds playing football outside…says it feel like there is something in his eye. That stops…go to football practice…of course we are still jumping…..a serious eye frow with nostril flare. Now notice he can’t talk when doing that one and takes a second to regroup. Coaches at football gave him a lot of attention(in a good constructive way) so maybe that felt like it was only adding to discomfort…I notice he’s a little meloncoly today, not talkatitve… I think he realizes why we are on this gfcf diet even he test neg food to allergies, I THINK HE THINKS I AM GOING TO FIND THE ANSWER so he puts up with all we are doing, but he’s getting very defiante this week, without out telling me in words, I KNOW this is NOW finally gotten to him. I'm sorry i've look but i'm an idiot ,please give me the address and number for the cunningham test, someone....i found the phone number for the doctor in DC and i am calling tomorrow also in sammy's story -how long was he on anti', what kind/dose and some said about slow release??? is that an optional treatment as opposed to pex/ivig

first let me say thanks for all you do 1but have you ever tried an elimination diet 2 does your family get to eat everything w/o concern 3are you staying on an elimination after the ivig 4 anyone who's done either procedure ...are you staying on your diets or are you looking to open up your diet? 5 my son always had remission for 3-5 months...now nine, tics been sticking around in some form for the last 6 months...i'm scared 6 lately the tics seem to morph over the course of a week for the past several weeks and having 3 he rotates within a given day...anyone else ever had this happen 7 even when this last episode started april 6, 2009 it was out of no where. both streps tests came back neg but the doc did let me have anti's for 10 days because he is so suseptible to strep but i couldn't convince anyone to give me more. and it would usually go away in 4-5 weeks completely 8 anyone know of pandas doc in Georgia please anyone if you could answer any part of this

On another note...I have to wonder if the Cam Kinase dies out with puberty/age...just like PANDAS is supposed to die out or dramaticall improve??!! As well as the other antibodies she tests for....so, if I send in my sample......would it still show high levels?? (If I ever had them) If not... it could just mean they "disappeared" with age......right? I don't know... any thoughts? thats what i think also for probably all spectrum cases.....on a note...my husband's blink/twitch trully subside by the end of a round of antibiotics..probably needs them long term......i would like to test him as well....he and the son i am worried about had a couple of years where they caught strep by looking at them....now i think my boy's bbb is so pourous it's suseptible to anything

looked at videos again..the short one shows the cancer thing and they aren't using blood extracts Also i never mean to offend anyone here....the people on these boards are the best!

Has anyone foud relief for their tics from allergy shots.....i'm looking into sublingual for my son. did blood work no allergies to any food, skin tested very allergic to all trees,pollens, weeds, grasses/again 6 foods tested...Got to go ouside to school and get in car(question could you still react even though didn't show up on test) Found this http://www.foxnews.com/video/index.html?pl...45012f3ad000096 these are more along the line of allergy shots but with less fillers/just the allergen ANY THOUGHTS guy....i don't know your history 1 is blinking your ony tic 2 you said it started with shots....did you stop the shots 3 what age were you 4 you said alternative things didn't work right? 5 do you feel socially hindered by it 6 on side...i think all ocds/ts/spectrums/etc.triggered by pandas/pitands/allergies/toxins. people/parents not observant enough to notice correlation. (they don't see someone standing next to them in grocery store trying to get their attention to get by.)..and stem cell reset/exchange a good answer/maybe swedo and such need to call on VIACORD Sot to pass on some interesting info on Epigenetics...in 1st one..in treating cancer, curios if its ivig or stem cells to reset... 1and 2 are best 1 TeleCourse - PBS Hawaii Epigenetics NOVA Episode It’s about 56 minutes or so!!!!! Your DNA is not your destiny!!! http://www.archive.org/details/epigenetics 2 a very good 10 minute snippet from nova ****** http://www.pbs.org/wgbh/nova/sciencenow/3411/02.html 3 Here is other nova’s site with all kinds of thing with epigenetics http://www.pbs.org/search/search_results.h...=0&btnG.y=0 4 Gene Switches http://www.pbs.org/wgbh/nova/genes/fate.html

I think many may assume that those who "believe" in PANDAS are trying to say that all OCD and Tourettes is caused by strep. We all know that is not true. I hope I’m not putting words in your mouth by what you are trying to say…(I’ll tell you my whole history some other time as I’ve watched this board off and on for years)(maybe in a couple of weeks I'll let it all out) No. I don’t know that it’s not true that all ocd/tics/ts aren’t caused by strep(pandas)and or pitands(allergies, virus) Most people aren’t observant enough to notice a correlation!!! People are oblivious to a physical person standing next to them in a grocery store as you stand there trying to get their attention to move. And as I read on this board, I believe that at least a few of people here say that they or some relative they know exhibits some spectrumish disorder. So if it where the case to be genetic, why are you saying it’s not for your kid? You must be assuming something is triggering this reaction, to be researching it and not just saying it’s a chromosome defect like down syndrome and let it go.? These kids are canaries in the coal mine! That new vaccine for cervical cancer is being w/d in Europe, as side effects show up months later. Also ( wish I could find it) it used to be accepted pre “modern medicine” that neurological problems followed an illness. Welcome to the 21st century! The world was once flat, smoking used to be safe, after that secondhand smoke was still ok. One particle of peanuts is safe for some but not another and what triggers your spectrum may not trigger someone else or in a different way, maybe in a way never heard of before or not as severly. There is always that first person. Here are a couple of things on something called Epigenetics. Has the switch been turned off or on and can you reverse it! TeleCourse - PBS Hawaii Epigenetics NOVA Episode It’s about 56 minutes or so!!!!! Your DNA is not your destiny!!! http://www.archive.org/details/epigenetics a very good 10 minute snippet from nova ****** http://www.pbs.org/wgbh/nova/sciencenow/3411/02.html Here is other nova’s site with all kinds of thing with epigenetics http://www.pbs.org/search/search_results.h...=0&btnG.y=0 Gene Switches http://www.pbs.org/wgbh/nova/genes/fate.html Why do some people develop these condtions later in life>>>hasn’t been tripped yet…immune system still developing while young, so very subseptible, but yet more resilliant to heal….overdose or body worn down by life and toxins as you get older…can’t fight anymore..there is a tipping point…I could go on and on I pray and cry with all of you here! Sorry if duplicate info here and not trying to offend…. All parents on this board are doing their best!!!!