myrose

Okay I got weak......I went back to the site and hit the "CONTACT US" button and BOY did I give them a piece of my mind. Couldn't hold back, that's for sure. After submitting I got a pop-up message thanking me and that someone would be contacting soon! Do you think someone will be contacting me soon LMAO!!!!!!!!!!

I know for sure that MSG was a definite trigger for my daughters eye blinking....there is NO doubt in my mind. I would surely like to invite these people into my home and give them a piece of my MIND! UGH I am truly disgusted that its actually lawful to state that POOP!!!!!!!!!!!!!!!!UNBELIEVEABLE!!!!!!!!!!!!!!!!!!!!!!!!!!

So Sorry to here of all this Melanie. I know how it all tugs at your heart strings. The roller coaster of emotions is unbearable to say the least. Especially when you feel you as a Mom that you can't help. My daughter is on Topamax....it really needs to build up in the system to get the full effect. My daughter was mostly motor tics but right before we resorted to Topamax I remembered a humming and sniffing noise that I now realize was a vocal. She had this reaction and same tic everytime she ingested MSG. It took me a long time to find that missing puzzle but MSG turned to be a BIG trigger for her. Her eye blinking tic was the last to go and when it finally stopped I looked back over my food journals and the only change was she stopped wanting the Chick-fil-a offered at her school once a week. Her eye blinking stopped completely about a week or so after she stopped getting the lunch. I researched and wouldn't you know.....IT HAS MSG!!!!!!! I know its fast food but always felt it was a healthier alternative to the others so I allowed it. Never would I have imagined that this little MSG once a week would have contributed to her eye tic. After that I learned the names of MSG....It comes hidden in other names and the labels can be VERY misleading! I am not sure if you are aware so forgive me if you are, but a reading on a label that says- "Natural Flavoring or "Vegetable Protein Extract" is actually 78% MSG!! Its so tricky to have a name like "Vegatable Protein"!!! We have stayed away from MSG ever since I made the connection! FAR AWAY. I am not a doctor but I have to say that when I got upset and frustrated (not to mention crying 24 hours a day) my daughter must have sensed this and it brought her more anxiety which of course meant more tics. Give him a nice long Bath in epsom salts, let him soak. Then maybe give him some die free benedryl before bed and see if they have calmed down a bit by morning. (some have a positive result from benedryl and some do not) Is there something that is bothering him emotionally at all?? Lastly Chlorine seems to be a BIG trigger for some as well. Does he swim or if you have given epsom salts bath....could your water be high in chlorine?? I bought shower filters and put them on her shower (that take the chlorine out) It also seems from your post to me that maybe its getting worse??? Have you been keeping a daily log so you can look back to a day where he is not so bad and then look to the day when he is real bad and see what is different. You would be surprised on how many things we really do forget about when we try to keep this daily log in our heads. We have a small electric hepa filter in her room as well and keep the door closed at all times. It could be worse when allergens effect him? I am not sure what testing you have had done or what medicines you have tried but PLEASE do not end up medicating him without having a clear head about it. Its hard to think straught when you are as desparate as this thing can make some of us. I would not want you to end up with unreversible side effects and then not ever be able to forgive yourself. You as his Mom know whats best so I will pray for the strength you need to make it through this. I have been where you are Melanie and its almost like someone sticking a knife in your gut!!!!! How long has he been on the topamax? My daughter takes the sprinkle cap form and when we tried the tablet form (free samples) she had a negative reaction and started body jerks. We stopped them immediately and went back to the sprinkle caps and she was back to normal. My reason for mentioning this is because a few of the dyes (inactive ingredients) are different in the caps so something as simple as that set her off!! Just like that. So think ingredients!!!!!!!!! Ingredients and Ingredients in everything that goes in his mouth. I know its overwhelming Melanie but if I myself can make homemade mayonaise (Thanks to Cheri) than ANYONE can do simple food changes that can make a world of difference. Maybe its something right under your nose like it was mine that you have not put your finger on yet. I believe right now that the both of oyu would benefit IMMEDIATELY from doing the deep breathing exercises in a few posts up. It will calm the both of you. If you need someone to talk to you can PM me and I will get your number or give you mine. I hate that you are feeling like this.....I know what its like and I am so sorry. This got way too long I know but my heart truly goes out to you Melanie...it really does. I would have let them cut my arm off back then if it meant my daughter was cured of this.

I came acrosee this site while doing some studying on MSG.... I couldn't believe what I was reading!!!!!!!!! Is this for real??????????? Check it out..... This can't be right, can it??? http://www.msgfacts.com/Index.asp

I figured it was a drug.....still seems so strange that I have read a trillion pages on all treatments for tics including meds and natural ways, but I NEVER heard about this drug or read about it.... Thanks everyone and have a nice night

I am running SO LATE here!!!!!!! Its my middle name. Interesting I just ran into someone who has a daughter with tics and anxiety. Her older brother goes to my daughters school so I was in shock to hear this. For I have NEVER seen this girl have any movement nor would I have ever guessed in a million years that she has tics. Strangly again....only one kids out of 4 show signs. She said she tried meds with her daughter and the side effects were worse than the tics. I told her of us coming off from Topamax soon and she said she never heard of Topamax and that her daughter is treated with Baclofen with no side effects. We were supposed to be keeping quiet during a chapel so really could not talk in depth like I wanted to and want to. Anyone ever hear of this stuff......I am guessing it is a drug as well?? I have to get back down to the school, I am late now so I will research when I return.....but just wanted to know if anyone heard of it. Strange.... PS) She is from New Zealand and so I am guessing that is where she was treated??? But not sure.... I am not meaning to push a med here.....but am curious if it is one and if so why I have never heard of it in all my reaearch and reading. She also mentioned John Hopkins doing studies on this and something about it controlling more of the anxiety than tics...but with less anxiety....less tics???? I wish I had time here....got to GO!!!!!!!!!!!!!!!!!

If I remember correctly you said you purchased it at iherb?? Every vitamin I need I can usually find at publix or Walgreens but the B5 alone is no where! I wonder why that is. Thanks for the clarification...my brain is just running slow these days. TOO much reading at once I guess.

Cheri, Did it help alone??? without other B's

Colleen, We had x-rays on the abnoids when this all started, and they also put her on Nasonex (the nasonex was before the xrays) We thought her abnoids would have been enlarged but I guess they were not. I posted our outcome on my other started post by mistake.... Thank You for taking the time to also read my old posts and understand my concern about Pandas. It seems though that all symptoms are basically the same for Pandas and Tics disorders.....is there any one thing that stood out for you? as far as symptoms?? Just curious If you do not have time to get to our outcome from today....a quick re-cap...I tested negative (must have been the brush fire smoke as I thought) They could not get he swab in correctly on my daughter although we tried really hard! It was negative but without swabbing the correct way we could not be sure if it was an accurate negative. It was noted that her throat was indeed red, no temp, but she felt a sinus infection is there after looking at her nose and ears. To be safe, I guess she prescribed the azithromax. 3 tabs, taken 1x a day. 250 mg. Because of the sinus infection I cannot save the azithromax for when we go off from topamax and not to mention it would not have been enough. She wouldn't treat me with anything LOL TOO bad Azithromax wasn't also prescribed for crazy people....maybe then I would have been put on some LOL Thanks again and have a nice night.

Well I guess that answers the question. The only reason I asked is because her titers were low but her blood analysis we did with Dr. Franz (her old pediatrician) showed a virus. I guess you can see where I was trying to go. Thought I had maybe and possibly a fighting tool with the doctors that would maybe sway them to look into the whole Pandas thing. Anyhow I did go to Walgreens today (care clinic). I got a throat swab...rapid was negative. She also feels that my sore throat was a result of all the brush fires that were a little too close to us. My eyes still somewhat burn! My daughter was refusing the swab and they wanted to actually hold her down but this was going to cause severe stress and I just could not do it. I tried everything from bribery to a trip to the store to buy whatever she wanted LOL Some of you may feel I am weak but the first time we ever did a swab was awful ! The guy was just not kid friendly at all. This ruined my daughters trust. Same thing with the blood....they poked her almost 6 times before they got in on her first bloodwork! The nurse practioner ended up being able to stick the swab in but not for long and not quite good enough. We tested it anyhow and it came back negative. She then looked at her throat and stated that it looked red and being that I pay out of pocket she said there would be no need to do the culture and just prescribed the azithromax. Her stuffed nose also warranted the antibiotic- she feels she may have a sinus infection going on after she looked in her nose and ears. Either way she said the antibiotic would cover it all. She gave me 3 tabs, I think they are 250mg and she is to take one per day. I guess I am glad I went in, her nasal congestion has really been hanging around. Mabe she will get some relief. I grabbed the probiotics from the back of the fridge when we returned home. I will give them in the morning being that she takes the antibiotic after school. Is this good? I will continue to read and plan my next move as these last few weeks pass by. Thanks again for all your advice everyone PS) I forgot who stated that a strep infection would not clear on its own.....I wanted to tell them it does but takes longer without antibiotics. My doctor confirmed this. (Of course I am just speaking of a normal healthy adult situation)

This may sound to some of you like a weird off the wall question but be patient with me......I have to ask. Strep throat is considered a bacteria infection...correct??? Could it or would it also be labeled or somehow seen as a virus??? Thanks I will explain why I asked this if the answer is yes....if not than just forget I even asked the question.

Yes I remember you telling me about the royal jelly but I am still not sure how I or my daughter would react to the honey? I can't say for sure if she would be allergic or not. So I was wondering if I took it alone would it still be beneficial? Also I thought I read it would maybe or possibly help with nasal congestion in which my daughter is experiencing now. If I could kill two birds with one stone (nasal/teeth grinding) I would gladly see how she would do on it....

Yes she is symptom free, some slight OCD but nothing different than what I do myself. Her biggest thing here is that she will not use a utensil for two foods. She has to have a new one for each different food. I am not worrying about, it was though worse and involved many other issues beforee we began Topamax. The only real issue that pops in and out is some sensory issues with clothing. She is to start her therapy in June for this again. Its quiet at the moment but I want to stay on top of it. Its weird how it comes and then its like its not there???? She currently has nasal congestion in which we keep under control with benadryl sometimes before bed, but more so with SinuCleasne (the all natural sinus relief) What is interesting this time is that although the nasal congestion usually does hit her in April/May it is usually gone by now. We have had no rain in like forever here in Orlando so this may be a factor but she complained of a sore throat yesterday and today and I believe I am going to pop in to one of those Walgreen clinics today with her to check for strep. She has had a few friends over the past few days in the pool screaming their heads off and so this accompanied with the nasal drip would cause a sore throat but I am just curious. Lastnight when I brushed her teeth her eyes seemed to do a little blinking and I have not seen that isince last year. It was also the last tic to go away completely. It stopped as soon as the brushing was done and I have not seen it again. Although we have a salt filtration for the pool the chlorine is still there in low levels so two days in the pool could have bothered/irritated her eyes as well. She slso complained yesterday that her eyes were burning. I told her to take a break out of the pool for a bit. She never closes her eyes when in the pool even when she jumps in they are wide open so this has always been an issue. TOO MUCH CONFUSION!!!! We are though coming off from Topamx on June 4th (Day after her school lets out) so we will see what happens. And yes I was wanting to try the antibiotics if things came back full blast before I resorted back to topamax...I was going to wait though for tics to return (if they did) wishful thinking here... Lastly...I brought in all Busters posts to my Neuro about the titer levels not having to be elevated....still nothing. I will see what the doc says. I am going to have us both checked for strep. I too had a sore throat here and there over the past week but the brush fire smoke we had was AWFUL and so I figured that was the culprit. We are going to have an issue with her letting them check so I am not sure what the outcome will be. If anything and it is strep....hopefully I will test positive and then they will just give her the anitbiotic without swabbing her. The screaming and crying may sway them as well. Just what I am looking forward to this afternoon. On the bright side WE ARE GETTING RAIN!!! Cheri.....are you getting any over there? It looks like you are. Thank GOD for this! We have too many vacant wooded lots around us and I was starting to worry! Thank everyone for all your input...I will let you know what the doc says!!! PS) Cheri....I tried to get into Dr. Murphy when this all started and they told me she was moving and not seeing any patients. Then our neuro (Dr. Davis) had a nurse practioner who was supposed to call her and see if she could somehow get us in. But...as usual...NOTHING. I even pointed out to the nurse practioner that if she could just chat with her (she apparently knew her) that she could get info on pandas and antibiotic treatment. Guess I got sick of calling every other day to get a voicemail and then no return reply.

Thanks for all your advice. Both the generic and brand name Zith is available on line so I thought maybe that was where some of you get it. I didn't order it because of the exact same things Cheri mentioned. Our old Pediatrician (Dr. Franz) will not do it. Two neuros will not do it either. I have also done exactly what you have mentioned which is go to the clinics inside Walgreens but they only give you a 3-day supply. She cannot take penicilin (had a reactin to it) and so Zith would be great for her. I am stumped for now but will keep trying to somehow figure this out. Its seems I took a break from it all but I have put this long journey aside too long now and I just want a correct diagnosis. This really is just sad that everyone looks at me like I am crazy when I mention "Pandas" Our first pediatrician never even heard of it. What puzzles me the most is why the Doctors are so leary of a trial period of antibiotics but have no problem prescribing drugs???? I will have to think of my next step here soon.....

Can B5 be taken alone without the other B's and still be beneficial for teeth grinding? My daughter has teeth grinding everyonce in while. Lately she has not been doing it that I know of but the problem is that I have started again. I used to do it all the time and thought I stopped for good but I guess not. My jaw is very sore today.

I understand your point but the symptoms of Pandas are so similar its hard to know and it troubles me wondering about Pandas. I guess understanding that the swelling over long periods of time is unreversible sis what bothers me the most. Its just strange with the sudden onset of the OCD and tics. The frequent urination, the confessing etc.... All confirmed Pandas seemed to have these. In response to the topamax, someone pointed out that maybe the topamax is actually a good symptomatic treatment for PANDAS and somehow stabilizing inflamed neurons??? I am not thinking long term anitbitioics. I would look at all options if she responded well to them. Even IVIG or possibly other supplements. I just do not know but I have to have some validation to fight at the doctors. Its a losing battle right now. ISo I guess maybe I really cannot answer your question but can just say that Pandas scares me more than Tics/TS and I would feel better knowing what I am dealing with. Hope that makes sense. As my daughter gets older and her weight increases I wonder if the low dose of Topamax would still do it. And so the increase in Topamax dose would then bring side effects I am sure. I do not know but again I am just thinking ahead and trying to somewhat prepare myself. I just fell apart when this all started and to be honest I am not sure if I could handle all that again. Not to mention my daughter. The higher doses of Topamax have one side effect in paticular that I worry most about and that is the over heating. We live in Florida so its scary to think about that. I truly guess I am in agony over what might be to come....maybe I am worrying about nothing, but its hard to stay on that positive road of thinking after all we went through here and still do not have a confirmed diagnosis of any kind.

My daughter is due to come off from Topamax on June 4th. If things take a turn for the worse I have deceided to try the antibiotic route just to see if they help. This will help me feel better in knowing I am seeking the proper treatment for her. If I see a change with the antibiotics I will for sure pursue the Pandas route and have the titers re-checked and then find a doctor who is willing to help. (This will surely be a long journey not to mention a frustrating one) If I see no change in antibiotics I will accept her diagnosis as a tic disorder or even possibly TS and pursue a completly different path. My trouble is getting any doctor to try this with me. No one will prescribe antibiotics unless she has a confirmed bacterial infection and her neuro's want elevated titers.... I just now was searching on line and see that the one antibiotic talked about alot here (zithromax) is available on line without prescriptions. There is also a generic one available. There are tons of places offereing this.......has anyone tried this. I feel kind of leary ordering a drug on line not knowiong for sure that it is exactly what it says it is. I am sure alot of you will know what I am talking about. So....anyone order on line and has anyone been using on line zithromax???? Just curious I guess.... The time is coming so quickly for us to ditch the topamax! I am a nervous wreck and I am trying to be fully prepared over here and ready to try other things that we have not done yet before resorting back to Topamax (if we have to anyhow)

Thanks Cheri, I will try to make this tomorrow. I also just found some Tzatziki today (cucumber and garlic flavour) Cedars makes it and it is SO GOOD! I will mix it up a bit for her and let her have the Tzatziki one day and the homemade mayo the next.

My daughter frequently has toasted cucumber sandwiches. All of a sudden she is requesting to have mayonaise on them. Anyone ever had a bad reaction with it??? as far as tics. She is still doing so well that I am still (and always will be) scared to death when we add something different or new to her diet.

HANOVER, Germany, May 11 (UPI) -- German medical scientists say they used a new imaging technology to discover changes in Tourette's syndrome patients' brain structure. The researchers, led by Dr. Kirsten Muller-Vahl of the Hanover Medical School, said Magnetization Transfer Imaging had never been used to study Tourette's patients. The scientists said they also found a correlation between the extent of some of the structural changes they identified and symptom severity. The researchers said they identified alterations in the frontal lobe of the Tourette's patients that might be responsible for the pathology of the syndrome. "Our in vivo findings, using two sensitive and unbiased techniques, support the hypothesis that alterations in frontostriatal circuitries underlie Tourette's pathology," said Muller-Vahl. MTI, the scientists said, is a refinement of the nuclear magnetic resonance technique, allowing detection of changes invisible to conventional MRI scanners. The imaging technology discovered alterations, in comparison to controls, in brain areas involved in the selection, programming, initiation and control of movement. "We suggest that Tourette's is primarily caused by a dysfunction in prefrontal cortex areas, rather than the basal ganglia, as has been previously thought," the scientists said. The study appears in the journal BMC Neuroscience. Background Pathophysiological evidence suggests an involvement of fronto-striatal circuits in Tourette syndrome (TS). To identify TS related abnormalities in gray and white matter we used optimized voxel-based morphometry (VBM) and magnetization transfer imaging (MTI) which are more sensitive to tissue alterations than conventional MRI and provide a quantitative measure of macrostructural integrity. Methods Volumetric high-resolution anatomical T1-weighted MRI and MTI were acquired in 19 adult, unmedicated male TS patients without co-morbidities and 20 age- and sex-matched controls on a 1.5 Tesla neuro-optimized GE scanner. Images were pre-processed and analyzed using an optimized version of VBM in SPM2. Results Using VBM, TS patients showed significant decreases in gray matter volumes in prefrontal areas, the anterior cingulate gyrus, sensorimotor areas, left caudate nucleus and left postcentral gyrus. Decreases in white matter volumes were detected in the right inferior frontal gyrus, the left superior frontal gyrus and the anterior corpus callosum. Increases were found in the left middle frontal gyrus and left sensorimotor areas. In MTI, white matter reductions were seen in the right medial frontal gyrus, the inferior frontal gyrus bilaterally and the right cingulate gyrus. Tic severity was negatively correlated with orbitofrontal structures, the right cingulate gyrus and parts of the parietal-temporal-occipital association cortex bilaterally. Conclusions Our MRI in vivo neuropathological findings using two sensitive and unbiased techniques support the hypothesis that alterations in frontostriatal circuitries underlie TS pathology. We suggest that anomalous frontal lobe association and projection fiber bundles cause disinhibition of the cingulate gyrus and abnormal basal ganglia function. http://www.upi.com/Science_News/2009/05/11...19461242082800/

Oh yes, I forgot about that part....we too had to press a little trigger thing but for us it was everytime she had a tic. The reason for the EEG was to determine if the tics were caused by seizures. In my daughters case the seizures in question were called "Partial complex" It could be a simple 3 or 4 second stare and thats it. The trick is to catch one and to call their name, if they do not respond within that brief 3 or 4 seconds (or more) than its something to worry about. My daughter used to stare alot, almost like getting fixated at something and you cannot stop staring at it. I too do this at times so the only way to tell for sure would be an EEG. My daughters showed just mildly abnormal but then afterwards got a clear one. The EEG ruled out for us that her tics/stares were not related to any seizure activity.

Okay I am confused on this post?? Where does the snoring come in? Did I miss something??

Hello Melanie, Yes we has the 20 minute and then also the 24hour EEG with video as well. I made sure my daughter got up really early the day before. This way I knew she would be tired and wouldn't have issues falling asleep in a strange place etc.... Bring LOTS of things to do like games and puzzles. You really have to stay in bed. The monitoring device can be hung on his shoulders to use the bathroom. It was a long night but we made it. I am the one who just could not fall asleep! My husband and daughter went out like a light! The little electrodes bothered her a bit and the cords from the device wrapped around her neck during the neck. But because of the TV monitoring (which is a part of it) they came in quickly to fix that. Hopefully your experience will be as pleasant as ours seemed to be. I am though puzzled about one thing......If you started on Topamax a few days back (which is also a seizure med) then how can an accurate reading be obtained??? Did he tell you to wean off or stop the topamax before the EEG? Just curious

Isn't citric acid in Juicy Juice?

I have recently began to experience the dreaded "night sweats" UGH!!!!!!!!! I am hitting 41 soon and did not realize I had to worry about or experience this so young (in my opininon LOL) Anyhow I started to take a vitamin E supplement, glass of soy milk before bed and black oshkosh (I know I am not spelling that but I am not home to read the bottle) This is working for me!!!!!! I have had 4 sweat free nights! Does anyone else have any valuable info on the whole menopause thing (as far as what helps) I am worried if what I am doing now will eventually not work after some time????? Thanks for all your help and sorry to go off from subject here but I know there are alot of women on here and all are experienced with natural methods so I figured I would give it a shot....