myrose

After not wanting to use the melatonin anymore with my daughter I tried one of those products. I forgot the name but it was supposed to do the same thing as the melatonin. I never saw a difference nor did it come close in comparing to the melatonin (actually had no effect) but I also only used it a short time. Maybe if I continued longer I would have saw some benefits with it. Luckily now we take nothing for sleep and her schedule is right on!!!! I love it when things go smooth like that. Goodluck if you try and please keep us posted.....Curious to know the outcome.

By chance does anyone have a safe dose for a 6 year old, about 45 or so pounds? I will try to search now....

Chemar, I will check those sights out now. AS far as the honey goes...not sure on that either. Can't think of anything she has had with honey...???? Probably just brain fry from the holidays....Thanks again!

CHeri, Okay guess I will skip the royal jelly until I know if she will be okay with it. After reading on the B5 though (very interesting) I would like to try B5 (p.acid) with her. Any recommendations on a good one for a 6 year old? Thanks

Hello, Its been a bit since visiting the boards for me. Hope you had a nice holiday. Just was thinking of your daughter and wanted to know how things are now?

Chemar....is there anyway to know/tell if someone couldn't tolerate the bee products? Other than finding out the hard way? No one in the family has an issue with bee products but my daughter apparently had a reaction to penicillin and they will no longer prescirbe for her. CSP....what kind of tests did you do that gave you all that info?

Hope everyone had a wonderful Christmas and a Happy New Year Day! I am just getting back to these boards now after a break. Daughter is still tic free (still on topamax) So I am pretty sure that something in the supplements caused the few jerks that started. Anyhow this post has me intersted! Cheri...my daughter grinds her teeth everynight!!!!! I was always a grinder myself (REALLY BAD) She is 6 now and about 45 pounds. Do you think the royal jelly might help with her grinding??? Is this associated with TS or tics? As stated I always grinded and still do but just not as bad as I used to. My poor little girl has her second tooth loose now and I fear her grinding may be causing it or may damage the new coming in. I took her to the dentist on the Monday before Christmas and all was good. I did mention the grinding to him but not much of a reply. Thanks.....I know I used to see the royal jelly on QVC or the home Shop Channel a bit back. I might have even tried it way back then but not for tooth grinding.

As most of you know.....My daughter has been tic free after starting seizure med...topamax. She was on a six week program with supplements to rid her of a few things including a heavy metal load. She was fine for the first 4 weeks but the last two weeks of the program required me to add a few different supplements (fish oil and some others to extract metal) She started to have a few body jerks and I was debating whether or not to ride it out. I decided to stop all supplements.....the tics went away 100% within two days. She still is tic free (still on topamax) and for now I am not doing anything. Want to enjoy the holiday! Lastly.......I HOPE EVERYONE HAS A CALM, HAPPY AND SAFE HOLIDAY SEASON. MAY THERE BE MIRACLES FOR ALL OF US. MERRY CHRISTMAS EVERYONE AND HAPPY NEW YEAR! SEE YOU ALL NEXT YEAR! PUTTING THE COMPUTER AWAY FOR NOW!

This is the second FULL day I stopped all supplements. No jerks or anything today. We are back to where we were. THANK GOD IN HEAVEN!!!!!!! I did suspect the fish oil as some of you recommended but being that she took it before with no issues I was not concerned. It is different and stronger though.....Hmmm I am going to continue with her probiotics, enzymes and multi for now. The doctor wants her to come in and do the blood now for the 2nd dry analysis and apparently we will go from there. I still did not get to talk to the doctor.....that makes me mad. But I think we are going to ride this out if everything stays the way it is and just enjoy the holidays for now. I don't want to do anything right now.......I want to have a good holiday and make up for last year. I will do the blood after Christmas holiday.....just need a break I guess and I do not want to get more out of the spirit if I see those things come back AGAIN! Thanks for all your help and replies....and I sure do hope everyone has a wonderful HAPPY holiday......... I will update if anything changes....I am just very happy right now

airbucket.....gee I feel so badly for the way you feel. You just about made me tear all up . Unfortunately I think many, including myself feel like you do. I was left after our first neurology appointment with the same....see you in 3 months! In the meantime my daughter continued the tics in which then turned violent. It was unbearable to see this and hear her crying to me for help to make it stop. I felt even after all the doctors we had been to....I was STILL alone. No one to talk to it about, no one to understand just what this whole ordeal is and was like. I live in Florida as well, you never mentioned where but I will say in here that I am in East Orlando. I am planning to head to a place in Melbourne....this is my next step. I think you should check it out.....you need to check it out. One of the posters Pmoreno can help with more info in regards to the place...... Please don't give up. I did this at the end of my rope and it just made me angry....so angry inside that I could not concentrate and just layed in bed for weeks.....its not good.... If you are close, maybe we can go together to this place...how old is your son? Check this place out now..... I know you will get some answers and not just meds......I will add you in my prayers....just know you are not alone...but I will say that I know it feels like that most of the time. http://www.creationsown.com/

Yes I only have a week 1/2 left to go, these last three that seemed to cause things only were to be taken for 2 weeks. I am STILL waiting for the doctor to call. I believe they are calling the company (person) who did the actual blood analysis and precribed the program. I did not give them to her this morning or tonight (she takes them in the am and pm) I saw a few body jerks today....if I see nothing tomorrow I will assume it was indeed from the the last three supplements we added and will not continue. The program was only 6 weeks to rid her of some heavy metal and a virus or fungus that was feeding off from the carbohydrates she was eating (and begging for) This is really starting to bother me. I remember how it all started so slowly like this in the beginning. We have to re-check the blood after the program and see what her body has been able to do with the nutrients and such she has been given. I am assuming they may add something different or hopefully everything did its job and we will be fine and can then start to wean off from topamax (scary) but know with this happening and I stopping the program...I am not sure know what..... I am going to call yet again tomorrow to the doctor...very frustrating when you wait...feels like forever. She has not mentioned her little jerks to me so I am just keeping my fingers crossed. I also asked her teacher today if she saw anything and she saaid no but didn't commit a whole day to studying her (ya know what I mean) I am trying to find something to read about symptoms of heavy metal detox....but haven't found anything yet. You would think she would have some kind of reaction in regards to the metal extraction but I just don't know.... Hope I answered all your questions and thanks so much for all your replies and help. I really want to finish this program and get the blood analysied again to see if the metals are gone...I want them out...this I know. I really am curious to see how it effects her EEG next time around (being that the metal is where the discharges were also from) Thanks again everyone...guess I just have to wait now.....UGH!!!!!!!!!!!

My daughter was on a 6 week program recommended after a dry blood analysis was done on her. The program consisted of daily probiotics, enzymes, and a nutirent plant based multivitamin. There were a few other things added every 2nd week but we are now on the last two weeks which still consists the first three things I already mentioned but 3 others were added to these final two weeks and I do not like what I am seeing. Let me also say that before adding these three things she was doing wonderfully! The changes I noticed were her complexion, the whites of her eyes were brighter and her appetite was WONDERFUL and still is. (she has been 40 pounds forever so I am LOVING this part) Anyhow let me remind everyone that my daughter started on topamax in late May (early June) and has not had a tic movement since. Just a few eye blinks that eventually dissapeared a long with the other tics. The main reason for the topamax at first was because of a somewhat mildly abnormal EEG that showed some spike and wave patterns on the right side of the brain. Turns out this had nothing to do with her tics but we made a decision to continue with a low dose of topamax because it took her tics completely away (I am sure I do not have to remind everyone how bad she was) But now all of a sudden and out of nowhere right after adding the three extra supplements she has become wired!!! I swear I also noticed a few body jerks that sent a KNIFE stabbing in my chest. Also noticed some eye blinking when I brushed her teeth! We have had none of this since summer and the only different things were the three following supplements: I put their purpose afterwards, I copied it all from her program sheet. 1 cracked Cell Chlorella (to extract metals) (www.mercola.com) 1 Super Omego 3 EPA (to bind with metals as they are extracted) It states: VERY IMPORTANT after this one 1 Burdock ( for liver strenghtening and blood cleansing) She only has to take these for another week but I am getting concerned and do not want anything to start again and NOT go away. I know sometimes things have to get worse before they get better but I am scrared and unsure what to do or which one if not all 3 of the added supplements could be causing this. She showed a high heavy metal concentration on the right side of her brain (same spot where the EEG was reading abnormal from) so that is why she is ont he 6 week program. We were doing GREAT on everything else and then BAM!!!!!! Do you think one of the supplements are pushing some tics through even while on topamax???? I really want to continue with the program so we can re-check the blood but I may just stop tomorrow now. Any comments??? advice (I did call the doctor) waiting call back.... If we stop now we will have stopped almost a week 1/2 short of the final to weeks. This last two weeks dealt specifically with the metal extraction....could that be causing something???? If we ever go back to the way things were....I am just not sure anyone here especially my daughter will come out of it all again....sane anyhow.

Please copy and paste the link.....this is one of the first things I read that I really understood everything in it!!! It also confirms my belief that a tourette gene can come out with just one having OCD and no tics. I have OCD. My Father is the one who carried the gene. My daughter seemed to show with tics and sensory but not as much OCD. I wish I was the one who displyed the tics instead of her.... Very good read in my opinion and worth going to it http://www.ocdchicago.org/images/uploads/p...te_Syndrome.pdf

Does anyone know if any of these stores carry those hot dogs? (all natural, no nitrate) Publix, Winn Dixie, Albertsons The usual grocery shops in Orlando Florida (East Orlando) Publix has alot of stuff that I like that doesn't have all the YUCK! Even no wheat etc...

I would have to say that I would be SCARED to give any shots but after coming to reality I would say that there is some I would do but I would not give ANY until 12 months of age. Also I would have them all broken up and I would try my best to find the most natural ones (if any exssist). I would do one at a time spread out. I wouldn't care if it took me 20 trips to the Doctor. I would let the body heal before doing the next. Also....I never knew this until after the fact but you can check the anti-bodies in their blood before having another MMR. Finding this out made me SO MAD!!!!!!!!! Why don't they just tell you this stuff. Most children don't need another one!!!!!!!!!! I had chicken pox when I was little and I had the shot. I would skip that one for sure..... Lastly...never knew you could ask for the thirmesol free flu shot. Thank God we never did them! I can only believe after experience with the last round of shots that she would be worse than she already is. As I have stated, no one in my family has displayed tics at all. I found out my Father may have had them, in which puzzled me more as to why only my daughter showing symptoms and no one else out of a ton of kids (lots of boys too) and even grandchildren. Here are the only differences I found: Everyone was younger than I when they conceived. I am the only one who needed a C-section (I will always believe he left her in too long before doing it) Lastly......NO ONE had as many shots as my daughter had (vaccinations). I really can not believe the difference in how it used to be. With all the increases with the shots you would think some deadly disease blew through the United States without anyone knowing. In conclusion I do think certain shots are important at the right time, but surely NOT ALL of them. In some cases like the chicken pox I believe the body should be let yo do what it was made for..... Just my opinion.....I wish you the best and if only I could start over.....The blinking tic started at 4 years old after 9 shots. It all progressed for the worse after that. It is now believed that she may have had a genetic pre-dispostion for tics and the SHOCK to the immune brought them out. And DON'T use TYLENOL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

What about the Hebew International ones???? (Hot dogs) What brand are at Trader Joes? Wish they would come to Florida!

The insurance company started an investigation on her after charges from her bloodwork showed up and some neurology charges. I tried to fight it but they rescinded her. Their reason was that she has/had a pre-exsisiting condition. Their was a question on the intial form that had asked if she had any abnormal testing in the past five years. I stated no on the application but then we later found out that her eeg showed mild abnormacy. They eventually collected all her records...(we had been paying out of pocket for EVERYTHING anyhow because of the hugh deductible) and made the decision to cancel her. I am not reall sure why. The only thing they ever paid for was a yearly health exam and that was always stated as normal for my daughter. We were sent a refund of all prior monthly payments made to them on her behalf and all the bills they have had on hold (since January) are now all coming to us. We get one everyday! I still make payments on the EEG's and the MRI and such but we are now overwhelmed and there is just no way to catch up. I am in the process of trying to get her on a program called CMS (Child Medial Services). This would be great but unfortunatley you have to go to just a small group of doctors. This means just the tradional ones who would just want to medicate. Further more its not going to help with the debt we are in now over the whole ordeal. The really sad part of this is that you would think that we would be having troubles due to the poor economy but in reality right now it will be because of medical bills. We had a private health Insurance policy. It was about $500 a month. My husbands employer offers it but they do not pay anything towards it so the cost for a family plan would have been $1300 a month. So for now all her doctor, dentist, etc...will be all out of pocket. A few weeks ago I had to take her in for a sore throat (seems I run to the doctor now for a sore throat) and the cost of the visit was $99.00 and the culture was $160.00. This was urine and throat. She has a dentist appointment on Tuesday as well so I am scrared about that. She is due for a cleaning and she just lost her first tooth not to long ago and the one coming in is loose (in other words I need to have it checked now). This whole thing can really take a toll on your financial position. Like anyone...I want the best doctors for my daughter and the ones that believe in natural healing and try to find the cause of the problem and not just want to bandaid it.....this sadly apparently is the problem. I think I am going to try the vaccine injury thing. The worst they can say is NO. All I know is that my daughter at 4 years old was never the same after those shots that day. The doctor who is suggesting I do this is her nre pediatrician, not the one who administered the shots. I did call them about all the reactions she had a week or so later and when I took her in they just said come back in 6 months...I do not believe they reported anything...I never went back there. I really love t=our new Ped....just not sure now how long I can afford it. I am so very angry right now.....

Just wondering if those who had experienced symptoms only after being vaccinated have reported it and made a claim for the vaccine injury compensation? Also your thoughts on it. Our current pediatrician who believes that my daughter may have had a genetic predisposition for tics was harmed by the 9 shots she received and that they indeed caused her issues. Since our insurance has now cancelled my daughter, her pedaitirician asked if I ever reported her reactions or made a claim. She said you only have 3 years to make the claim and suggested I do it now???? Any thoughts??? Any experiences???

Okay I have WHACKED my brain over and over trying to find just ONE thing different from everyone else in my family who has kids with no signs of tics ect... The only difference I can find is that I was the oldest when I had my daughter. Everyone else was alot younger than I when they started having children. Hmmmm....something else to think about now. Also...in regards to the mentioning of epilepsy....my daughter has had two EEG's that read abnormal. Discharges and spikes from the right side of the brain....no one can tell us why and we have been told that the tics are not related at all. Her EEG shows Partial complex seziure activity....the problem is that she has never had a seizure. It was suggested to put her on Topamax in case the EEG reading is a indication of future seizures (precautionary) We did this at a low dose and her tics went away....I wish one day to get to the bottom of it. She is due for another EEG soon. I wonder if I had an EEG if it would read the same??? I used to stare into space alot and sometimes still do.

I get the part about having (carrying) the gene and never showing symptoms...but what confuses me and what makes me think that it was indeed the shots that day is because....she went for 4 years with no signs or symptoms or anything. And then BAM right after the shots all the symtoms came. I guess what I am trying to say is that even if it were not the shots that brought it out...something else had to. Or is there is a reason that this just shows up one day after having no signs for years??? maybe if she did not get the big WHACK to the immune...she would have just continued to be a carrier and never have symptoms????

How many CHicken Pox shots are children supposed to get? The little info paper that youget at the doctors says only one on mine?? Did they change it to two?? Trying to figure out why my daughter got two?

lynsey, Do you think it is or could be possible that someone who has TS can only display OCD as a symptom and nothing else? Or only display ADHD and nothing else?? I hope I am making sense....sometimes I can't find the right words. My brain seems to be fried.

Faith, I was around pretty much around all of the family growing up. I even used to babysit my 1/2 sisters children. My brothers triplets I see only once a year now because we left New York. My brother and I talk almost everyday though and are very open. His wife is even recommending a shot schedule to her Ped that she feels comfortable with (just to be safe I guess) I never noticed anything with my 1/2 sisters growing up nor my brother either. I also have a very close relationship with the brother we just found out we had last year. We talked about tics for quite sometime and for many many days. He was trying to help me figure it all out but we just never could find a connection (meaning a jerk, a twitch, a funny sound, ect.). I guess what really puzzles me is that there are alot of kids (boys I might add) in the family from my Father and no one else showed signs. My Father obviosuly was never diagnosed either so I am mad about that. I would love to pick up the phone and track him down but I just can't. The conversation just would not go well or start well. In other words he would be of no help to me and no he doesn't seem to care about his grandchildren...much less his children. I just don't understand either why my daughter never displayed vocals. Last year and before Topamax I even started tape recording whole nights at home thinking maybe we missed something. I always thought you had to have a vocal and a motor to qualify for tourettes. My Father apparently had a vocal and motor all the time, all day, but my daughter seems to not have vocals at all. Now I really wonder about whats to come when we taper off from Topamax. OH...Lastly...I have ocd tendencies, but everyone I know seems to have a little bit of it going on. We all have our thing I guess. Gianna did some hand washing that lasted about a week and also displayed wanting perfection in her drawings but it never became a problem and went away quickly. I feel I am getting ready to close the book on this whole thing. Its just too much sometimes, it never ends, always something....do you know what I mean? I know I need to be Thankful that my daughter has mild issued compared to some I read about but if only I could understand why, than maybe I would be able to deal with it all better. Think I am rambling now...sorry

Yes that is pretty much what happened at our first appointment. There was some discharge in the EEG, so a 24 hour one was then requested followed by an MRI. Nothing to be worried about. OH! He did order blood work....to check amino acids, titer levels, aso dnase, and I think that was it.... Maybe you will get some answers. But remember there is no "TEST" to confirm Tourettes. Its just based on history, symptoms and how long. So, I guess all neurologists have to think the same in order for all of them to give the same diagnosis.....this is only my opinion...but I don't like that part of it. There are other reasons for tics and all that accompanies it so if something does not make sense to you or you feel uncomfortable with any diagnosis given....I urge you to always get a second opinion. Just don't settle for something you do not understand. Hope I explained that the way I intended to..... Goodluck to you....I did not know your history, but you are at the right place for help in understanding what its all about.

Go to this link and then hit "Mercury Calculator" at the top of the page. Then check all the immunizations given and get the results if it is higher than the EPA reccomends. http://www.nvic.org/Issues/HgCalculator.htm