myrose

First and foremost....THANK YOU to all of you for your constant advice, suggestions and guidance through it all! I just finished reading all the responses I had to my last few post and WOW. I do reply to each one but I am not sure if I am doing it correctly so that you see it? I am still trying to figgure out the navigation in here... Anyhow for those of you NOT familiar with my last few posts or so my daughter was ticing pretty badly a bit back and was put on nasonex for a two week period for a stuffed up nose that would not go away. I noticed almost complete absence of the tics just the next day after she started the spray. They remained gone and only a foot stomp appeared, nothing more. (Harldy noticeable) I was waiting to see the outcome after we were off the nasonex and it seemed okay but then I had to take her in again shortly after for what I believed to be was just a cold. She had no symptoms but was diagnosed with strep. We started amoxicllin that day and I saw nothing of tics at all. COMPLETELY GONE! Then...I saw the first one the other day (foot stomp). Just one time but it sure had me more confused than ever. Well I may have found out what was going on! She came out with a rash today. Little red dots all over, almost like measles or a better word would be hives. I immediately called her doctor and she instructed us to come in. When we arrived she looked at my daughter and said it was a reaction to the amoxicillin. (This was our first time ever on antibitocs) I said okay but what puzzled me is that she has been on the antibiotic since last Wednesday and a reaction (if any) should of taken place within a few days or so. Then it HIT me! She was taking her medicine 2x a day mixed in yogurt (the pharmicist by the way told me that it was okay to do this) But for the last 3 days she was taking it in homemade applesauce. Apparently what I understood and thought I knew was that yogurt is good to take when on antibiotics because it helps build back up those good cultures that the antibiotics kill being that they kill them all...good and bad. But the doctor said today that by mixing it in yogurt and taking it all at the same time would make the medicine less potent and she would not get the full effect from it. The last 2 days taking it with applesause allowed the full dosage and effect so that is why it took her until now to react to it. Almost like she just started her full dosage just two days ago (Make sense to anyone?) Is this true?? Would explain alot right now for me if its true. So please if anyone is mixing their antibitoics with yogurt...please look into it. She took her off from the amoxicillin, told me to give her benedryl tonight and then tomorrow she starts on Azithromycin for 3 days. I soaked her in aveno oatmeal tonight and then the benedryl kicked in. Her nickname is polka-dots for a few days... Please let me know if anyone can verify the info from the Doc. and if I am understanding it right. Thanks in advance to Everyone!

lurker...what is the ICG you mention? we have so far been through MRI, EEG and then bloodwork. I have not gone down the allergy road yet. Because the nasonex had such a positive effect I told myself it was the best next step to take. (sure I have many more steps after this as well) Anyhow I know nothing of an allergy test and have no idea what they will even do. I only heard of skin scaping?

Okay so now day 7 on amoxicillin and for the first time I noticed a small foot stomp today. The only thing different from the last 7 days from today was that the nasonex spray ended yesterday. Today she only had amoxicillin and no nasonex. I also noticed she started to pick the skin on the sides of her fingers. It was pretty bad. Does this have anything to do with the tics?? I was happy when she was completely tic free but I also felt I knew they would probably come back. Its okay though the last 7 tic free days gave my mind a needed rest! I was so overwhelmed from all the info on these boards that I was about to explode! I am refreshed and ready to stick with our plans. She hasn't mentioned the foot stomp to me at all even though I saw it so I am hoping it will not bother her like it was before. This whole experience has got to be the most draining of my life. (emotionally anyhow) And then there is the fighter and the determinationer (is that a word) that comes out of me that I never knew exsisted. Any comments on the skin picking would be helpful even though I am secretly scared to death to ask....just am afraid as to what you all will tell me. But please do... I am going to just see what happens after Sunday. This is the day the antibiotics are done. If things pick up real bad I will start Bonnies Supplements until we get in to the allergist. Thank you all for all your support and help. I am not sure if the ones who reply to my (and many other) posts realize that their words, comments and suggestions have made all the difference in the "tic world". I am embarrassed to admit that the "strength" that is supposed to come from inside...sometimes comes from here for me.

tracey, Can you tell me what kind of liquid magnesium, where to purchase and how much to give for a 5 year old, 40 lbs. Also do you have to give another supplement with it in order for the body to get the best absorsion? or will any others break it down to nothing?

Curious to know that if the magnesium everyone has had success with also helps with Hyperness, OCD etc.... I am trying to prepare myself to fight this thing if and when it comes back.

For those of you that have read my previous posts you know that my daughter is on her 5th day of amoxicillin for a strep throat and her tics are still 100% gone. That almost disapeared entirely a few weeks prior to this when she was prescribed nasonex. I am working on all this now and am currenty waiting to pick up her blood work from August 07 to have someone else look at the levels for Pandas and then it will be off for some allergy testing. Right now....I am not sure what is going on but I am not doing anything at this time. I guess I am just waiting for them to come back. Until they do, I am not changing anything we are doing right now. My post is to ask about the wax and wane period. Right before she was prescribed her nasonex her ticing was on fulll blast. I thought this was due to the wax and wane? It lasted quite a long time though. So my question to anyone who can help is how often does the wax and wane period come about and when it does come...how long does it last??? Could my daughter be possibly in this stage now? I never really understood this wax and wane thing and so now I am asking the BEST doctors around and those doctors (in my opinion) are all you wonderful people ON THIS BOARD!

Gee my heart is with you. I kow alot of the Moms here mention that maybe sometimes we as the parents pay more attention to the tics then our children do. But I must say as like you....it broke my heart when my happy little 5 year old girl did not want to go to a birthday party because her tics were bad and she was wfraid someone would notice. Other kids can be SO cruel sometimes. She cried so hard and all I can say is that is the day it all started for me. We are tic free at the moment....I am just waiting though and scared. Kindergarden will start for her soon and its a frightening thought. I added a hepa filter in her room and she was put on nasonex for two woeeks (all stemmed from a plugged nose that would not go away) the tics were reduced greatly at this point. I would say 98%. Then she went last week for cold symptoms and a stuffed up nose again and we were told she had strep throat. (I insisted on this test) she did not have a sore throat at all or any white spots in her mouth. It came out Positive and she was put on amoxicillin twice a day (first time on antibiotics in her life) well the tics went away the next day and have been gone since she has been on the antibiotic. It has been recommended to me on these boards to get the levels of the Pandas (titers) testing already done. Also that you DO NOT have to have high levels and they came be normal yet still have pandas. We are antibiotics until next Saturday....if the tics return after we are done with the antibiotics....I know what my next step will be and from what I have heard on these boards...its not going to be easy convincing these Doctors to listen and prescribe antibitocs but I am ready to fight the fight............Everytime I feel like giving up and drowning in my grief all I have to do is remember that day she cried so hard...... use your child for strength.....you will and can help her.....I am not sure what steps you have already taken to help her but do not get overwhelmed. Start out slow, one thing at a time. You can do it and you can do it TOGETHER! You will come out stronger and closer than ever before....

with acceptance comes peace Two words Chemar..... "Thank You".... oh, and three more words.... GOD BLESS YOU!

I have not started the supplements yet. My daughter is going through a tic fee stage right now and so I am trying to figure it all out. If and when I look to start giving her the supplements i will bring them in to her Doctors first and make sure they are okay for her. I had planned to do that since day one....just have not started them yet. Could you possibly bring them in to his pediatrician and ask? If so can you let me know what you are told. If I need to start them and get advice from our pediatrician I will let you know as well what I am told. Have a nice night and I hope your son is doing good.

Hello, I received Bonnies supplements over two weeks ago and have not started them. My daughter right now is also going through a GREAT period of tic free in which like you...I am scared to rock the boat. I am just waiting it seems for them to come back. I keep watching. Today I thought I have spent so much time watching and waiting that I forget about what is really important and that is spending time with her. I guess its so easy to get caught up in all this. All you want to do is make everything okay for them. Anyhow I wish your son continued success and have just a few questions if you would not mind answering... If my daughters tics come back I am going for testing of allergens and then on to Dr. Murphy. In the meantime I will start Bonnies supplements.... How old is your son and how did his system first take to the vitamins? Was it easy going or a ruff start with the supplements. Also do you give him a multivitamin on top of Bonnies supplements or just Bonnies supplements? Thank you so much and I will pray here just in a few minutes after I sign off for both of our children and everyone else's on here as well.

Thank You SO MUCH for your reply! I am heading to her soon hopefully. Just want to make a call ahead of time to see what might benefit us to bring along...such as test results, diairies etc.... Did you make an appointment? Are you headed to see her?? What is OT???

I am not sure about the insurance part of it all but could you at least state what area you are from. That would help a great deal. Or are you willing to travel? I can only answer from my own experiences and from reading the boards...

It all started around 3 years of age. First with adominal tensing, toe scrunching and then the eye blinking. After her eye test came out okay it stopped. Then she started with shoulder shrugs and sort of a body jerk. She was brought to see a neurolgist but all tests (MRI, EEG, and Blood work) came out all normal. Including the ones done for Pandas. This was in August 07. Thank You so much for your reply, I truly appreciate it.

Hello Chemar and Thank You so much for your reply and advice. Her neurologist did check for Pandas through bloodwork. He checked TSH, antistreptolysin O Ab, Anti-DNase B Strep Antibodies, Venipuncture. He said it was all normal. This was in August 07 (our first neurology visit) also he did the MRI, EEG as well. Everything normal according to him. So I am truly confused to say the least......

First of all Thak You to everyone who has answered and helped me. There were so many replies and I am not through reading them all therefor have not replied to all of them yet. The responses on these boards are wonderful and so AGAIN THANK YOU TO ALL who have helped and answered my posts with suggestions, answers and advice.... My daughter was prescribed amoxicillin (liquid form 1 1/2 teaspoon per day). She was prescribed this for strep throat. This is our first time having strep and also her very first time on any kind of antibiotic. She will be 6 years old in September. Started with eye blinking, abdominal tensing, toe scrunching in Nov-Dec 06 than progressed to shoulder shrugging and body jerking. The latest was a foot stomping that slowly went away while she was precribed nasonex. Now on day 4 of antibitoic the foot stomping has gone and nothing has come in its place. We have always ate a very good natural diet, no preservitives and sweets except at birthdays parties. I also have never used toxic cleaners in the home including laundry detergent and fabric softner. We did install a hep filter in her room though a bit back. So now I am completely confused to say the least. Do tics go away and then come back??? She even had Valentines Day sweets at school and at home and still nothing! What is going on now????????????????????? I am going completely CRAZY trying to figure it all out. I was in the process of trying to get to gainsville to see Dr. Murphy but I would not want to go now without symptoms???????? I truly wish this WHOLE thing would just go away for EVERYONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am getting so exhausted and overwhelmed on the reading and trying to figure out the next best steps for us and now this! Can someone relate to this experience at all???????????? Again THANK YOU to everyone who has been so helpful with all the advice, suggections etc... God Bless everyone of you and I wish Gods Speed for all of us.

Thank You SO MUCH for your reply! I am heading to her soon hopefully. Just want to make a call ahead of time to see what might benefit us to bring along...such as test results, diairies etc.... Did you make an appointment? Are you headed to see her??

Hello Faith, My daughters bloodwork was done on 8/31/07. I do not know the levels it came out. I do not know anything about them so even if I knew what they were I am afraid it would make no sense to me. she always complained of a sore throat for a period of time. I took her for a strep test a few years ago when I was informed that a girl at a birthday we attended had it. It came out negative but the doctor had a hard time trying to swap her throat, she really would not allow it. I always wondered about that test in the back of my mind only because that was the time she continued to complain of the sore throat. That test was done in Feb 06 and her her first tic (eye blinking) started in October/Novemeber of 06. Around this time she had also toe curling and some adomen tensing. These went away and she then continued with the shoulder shrugs and a sort of a body jerk. These were always very mild but very obvious at the same time. (In other words it was noticed by others) The Doctor finally agreed to send her to a neuroligist this past year in August 07. He ordered EEG, MRI and the bloodwork. He said it was just a "Habit". We went back this past December and he diagnosed her as having a tic-disorder. She continued to tic but mildly since then. Then in January it seemed to be getting worse. Her body jerked a few times so hard that it produced a grunting sound out of her. Then she got a stuffed nose that would not go away (kept coming and going) so I took her in to see the Doctor adn she was prescribed Nasonex. The day after she started this all her tics went away. Slowly a stomping of the foot started but that is the only thing she has going on now. Its very mild but she is definately stomping her foot down when walking. She is stomping it very hard. Her teachers noticed a disapearing of all the tics that were noticeable as well. Weird huh? So now today we go in for a cold (cough and stuffed nose again) and we get a diagnose of strep and we were also put back on the nasonex along with the amoxicillin. This is the first time my daughter has ever taken an antibiotic in her life. (She will be 6 in September) The more I read about all these things on the board the more I see of her in all the posts. But its so confusing as to the tourettes, the pandas, OCD, ADHA.....she could have a symptom of them all in my opinion. She TOO was very hyper at a party but seems now to be hyper all the time. Just overwhelmed I guess with all the reading and the late hous I have kept over the past months. I am her Mom and I am supposed to be able to help her and I can't. The tics bother her...she does not like them and feels as though people will make fun of her. I have Bonnies Vitamins ready to go but after the reduction with the nasonex I was trying to find a good envirnomentalist for her. Then tonight I read about Dr. Murphy and being that she is only in Gainesveille (2 hours or so from us) I thought that might be a good place to start??????????????? sorry this turned to be such a long reply. Guess I am in venting mode again....

Thanks so much for your help. I was getting confused as to if her tics should increase or get worse with the antibiotics.... I think I just have been reading TOO much and my brain is just overloaded with so much that I just cannot make sense of it anymore. Thanks again and I am praying to see if maybe this will give us a diagnosis. I have already accepted that there is indeed something wrong but I just want to know WHAT IT IS! I am sick of hearing....well I will see you in 5-6 months, it could get worse or maybe even go away! FRUSTRATED TO SAY THE LEAST!!!!!!!!!!!!!!!!!!!!!!!!! By the way the doctor who diagnosed the strep today...NEVER heard of pandas. I don't get it!

Can someone give me the number on Dr. Murphy. The one in Gainesville?? I think that is where she is. I live in Orlando and have heard nothing but GOOD about her. The only BAD thing I read on these boards is the wait to get in to see her. Does anyone know if she is still seeing patients. If our insurance does not cover this..can someone also give me an idea as to how much a visit like this would cost and what she would do to start in a chronic tic disorder??

My daughter came down with a cold. It went on for two days and I deceided to take her in for a check. (I am not sure why I did for I truly believed that it was just a cold.) Other than COMPLETE congestion in her nose and a cough that started on Tuesday, she has no other symptoms at all. She is also acting her usual self as far as energy etc.. I asked the doctor to check her for strep. My daughter did not have a sore throat at all but I was just curious as to this PANDAS thing. Well...it came out positive. I can't believe it really! I was in shock. I asked my daughter again if she had a sore throat and she said no again. We were prescribed Amoxicillin (liquid form, 1- 1/2 teaspoons, 2x a day for 10 days. My question is if her symptoms disappear while on antibiotics (tics) could this then maybe have something to do with Pandas? She was diagnosed with a tic-disorder by her neurolgist who sees her every 6 months. He did order the blood work in the beginning when we first saw him. His orders were for: TSH, Antistreptolysin O Ab, Anti-DNASE B STREP Antibodies, Venipuncture. It was all okay according to his nurse when I called to check on the results. She has never had strep throat before (well now I am thinking that maybe she did and we did not know) I am confused now...... Any advice....

Carolyn Thansk so much for your replies and help. You are a true blessing to say the least! My computer line was down for a bit and I was going NUTS not being able to access these boards. My daughter was weaned off from clonidine completely last Wednesday and she also stopped her 2 week course of nasonex the following day on Thursday. I was waiting for an explosion of tics to hit full blast. I was so scared! And had Bonnies supplements ready to go! Strangely she has hardly had any tics at all. I keep waiting everyday...but nothing. I am in the process of scheduling now for an allergist. Trying to find an environmental one. Seems to be the best and first step to take from here? Would you agree? Thanks so much again for all your help. I also wanted to tell you that I did give her a bath in the epsom salts even though her tics were absent and I have to say that she slept like a baby that night and was SO CALM the next day!!! I am not sure if that was a coincidence or not?? Strange thoguh on her calm adn quiet mood. I also made the cream to have that ready as well but its on the watery side. Maybe I should add more cream to make it thicker?? Lastly...the only epsom salts I could find were scented with spearamint and euculiptis (or somethng like that) I am asking if thats okay to use when her tics come back or does it defeat the whole purpose with them being scented?? Thanks again and have a wonderful night! I hope Daniel is doing great as well!

Thank You so much Caryn for your reply. I did write an email to Bontech and they responded/advised that I use nothing else at all while on the supplements. Your comments on the calcium and zinc are concerning me now. My daughter has been perfectly calm and pretty much tic free after a 2 week course of nasonex. I also added a hepa filter in her room at the start of the nasonex. I thought it was all strange and believed and still do believe there may be a connection....hopeful anyhow. So our next step is the allergy testing. So as far as Bonnies supplements, I am waiting to see if her tics come back and pick up before I try them. I am just giving her a multivitiamin for now. I am not sure how we would get through 10 of those things when and if it does come time to try! Thanks again so much for your reply, I truly appreciate it.

I have not started Bonnies Vitamins yet...planning to do so soon (after an allergist sees her) My question is if I should give her, her daily multivitamin along with the supplements or stop the daily mutivitamin when I start the supplements. Also can anyone recommend a GOOD multivitamin for a 5 year old (trying to find one with everything in it but the dyes and such) Thank You so much in advance for all your help. My computer internet connection is down at home right now and I am going CRAZY not being able to access the boards here! Hopefully it will be fixed SOON!

Carlyn, You made me smile after I read your post, I then linked back to some of your other posts and you gave me hope! Thank You so much from the bottom of my heart. I see your so very determined to get to the bottom of all this...I feel the exact same way. I laughed when I thought of how many hours and how many nights I too was up until 2am. I still am now! I ordered a few books just now and I am going to first start with some of your advice. I agree with the comments you made on the nasonex....I forgot to also add that the day before the nasonex I added a hepa filter in her room. Anyhow let me know how this sounds okay.....(All the help and advice I can get would be much appreciated) As I mentioned Gianna is weaning off from clonidine. Her last 1/2 pill was tonight (kinda scary) She also stops the Nasonex today as well. (Her Doctor told me to use it for two weeks) I was going to start the Bonnies vitamins tomorrow but I am STILL not seeing hardly any tics at all so I am not going to go ahead with the vitamins just yet. I want to wait to see what happens while off the clonidine and Nasonex first. If and when I see her tics come back I would like to try the benedryl for one night and see how this goes. if I do see a difference and reduction I am going to go from there. If not I will start the viatmins as planned. I just am afraid of doing too many things at once like I always seem to do and then I never know what really helped. I have already made adjustments in most areas such as the diet, all natural cleaners in the home (including laundry detergent and fabric softner) You name it...I have changed it. Can you tell me how your son is doing today? Also some tips in how to get the allergy testing started?? Thank You so much again....I can honestly say that as I go to bed tonight....its almost at a decent hour and I actually have some hope that I did not have yesterday... Thank You. e name='Carolyn.N' date='Feb 6 2008, 02:55 AM' post='20316'] Hi Wendy, Boy I feel for you! I know how hard it is when you are trying to figure out how to get these tics under control. But you have HUGE CLUE her tics went down when using the Nasonex. Nasonex has a direct impact on lowering histamine levels http://www.spfiles.com/pinasonex.pdf (read I believe it was five paragraphs down). Histamine levels have a big impact dopamine levels. Elevated dopamine is the main reason for the tics occuring. So my point is if you can figure out what allergy is triggering her I think you will make major leaps. Don't just think it was a coincidence her tics subsided when using an allergy product. I don't know if you read but I found that giving my son Benadryl decreased his tics. Here is my post regarding this http://www.latitudes.org/forums/index.php?showtopic=2946 . Have you considered giving her Benadryl, at night time since it makes people sleepy, to see if she has a reduction in tics? If you are concerned about any possible drug interaction, with the Benardyl, I am sure you could check with a pharmacist. It would be interesting to know if her tics decreased using it. I know I am not the only one of the forum who noticed a decrease in tics with Benadryl. You will read about that in the above mentioned post. Also please note a few people, like Chemar's son, have reactions to anti-histamines. So be aware to observe her for any increase tics, if you decide to try it, just in case she is one of the few who would react negatively. Have you checked into NAET treatments for allergies? You can do a search on the forum and read the success stories with NAET helping reduce allergy symptoms with no medicine at all. We use Bonnie's Grimaldi's TS-Plus and have had great success. However, if my son is exposed to those things that effect him Yellow 5 and 6, Red 40, MSG (major trigger), caramel color, vanillin, or high fructose corn syrup he still will have tics but not at the same intensity. So my point is it needs to be a combination of vitamins and diet change. Here is a link that explains the other vitamins we give my son http://www.latitudes.org/forums/index.php?showtopic=3010 . We started out the TS-Plus slowly and worked our way up to 10 a day. I would say I noticed an impact for him about a month after taking them but I know for some it is sooner and some later. I really believe the magnesium taurate in the product and the B-vitamins are very helpful! I believe the reason some people react to Bonnie's TS-Plus is because of one of the B vitamins in it that some people do not tolerate well, I don't remember which one it is but perhaps someone can post this information if they know the answer. Hang in there. Keep a log of what you think might be triggering her and make some observations. I really think once you can figure out her allergy/allergies you will make a massive leap forward in helping her. By getting those histamine levels down which will lower her dopamine. By the way vitamin C is a natural anti-histamine. So giving her additional vitamin C would be great. The only side effect is taking too much can give you diarrhea. God Bless, Carolyn N.

Hello to everyone and also THANKS to everyone on this board. Although this is my first time posting I have been reading these boards for quite some time now. The boards have helped me through some long long nights of depression and tears. My daughter is 5, and she has tics. Quickly my story.... My daughter used to suck in her abdomen all the time...I think she was around 3 at this time. I first asked her why she did this and she just said I don't know. A trip to the doctors revealed nothing. It stopped and so I guess I just never thought about it again. Next I noticed she was curling her toes...I bought her a new pair of shoes thinking maybe her shoes bothered her and were even too small. This also past and was forgot about as well. Then it was the constant sniffing-- thought it was an allergy (we live in Florida) Lastly the eyes...constant blinking. I cut her bangs, and then off for an eye test. Then again this was forgot about as it just disapeared. The one day while at pre-school her teacher called to say that maybe Gianna was not feeling well and that I should come to the school. This worried me and was very unusual so I rushed to the school. When I got there the teacher had me observe Gianna while she played in the sand (she did not know at this point that I was there) As I watched she was doing a very weird movement...its actaully quite difficult to explain so I will not try. I scheduled her for a doctors appointment the next day and was told to come back in 1 year if nothing changed. Well of course...nothing changed other than maybe things got worse. She had shoulder shrugs and then sort of a full body jump or jerk. Almost like if you stuck your finger in a electric socket. She started pre-K last year and for the first week of school we saw nothing. The second week the teacher noticed her. I then explained the situation and called to make an appointment with a neurologist. I did not realize we could have done this WITHOUT her doctors referral. We finally got in to see him (felt like forever) he ordered a 20 minute EEG in which showed abnormal. He then scheduled a 24 hour EEG and bllod work for Pandas. Orders were for ASO, Dnase-B Antibody strep B, and TSH. Her second EEG was normal and he said her bloodwork was okay. He then asked if I wanted to put her on medication and I refused. He then suggested 1/2 tab of melatolin before bed (she was an acrobat while sleeping)! He diagnosed her as having a tic disorder and that was it. All seemed okay but the tics then started to bother her. She began an arm tic that would make her arm move when she tried to write on paper. She was also crying when she thought someone would notice these things at a birthday party she was invited to. She calls them her "shakes" I felt helpless at this point and called the neurolgist again. I agreed only to clonidine and at the smallest dosage. I was told that this was not an addictive drug and that there were NO side effects. I tried this in a desparate state. I hated not being able to help her and not understanding how this happens to a perfectly healthy little girl. We did okay on the clonidine, it made her tics mild, took the edge off and sometimes were not even there at all. My plan was to take her off this medicine as soon as school ended and try more natural treatments. I continued to do my research over this period of time as well. Then about 3 or so weeks ago she started waking up and kept saying she was having bad dreams. The medicine at this point seemed to not be working at all. (I have read about the wax and wane) but this went on for 2 weeks or so where she would just tic like crazy and everyone started to mention it again to me. I again called the neurologist to ask about the medicine and was informed that nightmares are indeed a side effect of clonidine. It does not happen to everyone but it did effect my daughter. I then told the neurolgists nurse that I wanted her off the medicine immediately. She instructed me to give just 1/2 tab for two weeks and then stop it. I refused other medicines similar to chonidine and made a decision to start Bonnies vitamins now instead of waiting until school ends. I just didn't want the tics to start up like crazy and have the other kids bring it to her attention or possibly tease her. I am so very worried about her self esteen right now. Anyhow coming off the clonidine has been crazy for at least us. She was more hyper than ever and had a melt down in school. I thought I might have heard some vocal tics as well. Some loud screetching and a few others. I notice she tried to hide them as well. Not sure why. I told her its okay no matter what she has to do...just do it. We just ignore it all as instructed. Things have settled a bit and Wednesday will be her last day on Clonidine. I also wanted to mention something that was strange to me and that is that almost two weeks ago during her BAD tic time I had to take her into the doctors for a stuffed up nose that kept coming back. She was prescribed Nasonex and the day after spraying the nasonex in her nose her tics disappeared. They went from bad to nothing. I wasn't sure what was going on but I did not see any at all even during the first week of weaning from the clonidine. The only thing she does now is sort of straighten her leg out when she walks. Almost looks as though her leg gives out when she is walking or maybe its that tic that is like a jump???? COMPLETELY CONFUSED! to say thew least. Her neuroligist sees her again in May. He just keeps telling us to come back every 5-6 motnhs. In the meantime we have spent out of pocket close to $10,000 on the tests he ordered. (Thanks GOD for charge cards) Our private insurance at almost $500/month covers nothing on this. I am writing for two reasons....advice on the vitamins and why has she not been diagnosed with Tourettes? I did read a little more on Pandas and was shocked to see the similar symptoms. Especially the clingy thing. She does not let me even go to the grocery store without having a meltdown. She says she will miss me! She also says she feels like she has to go to the bathroom all the time but produces nothing most of the time. I asked her if she knows when she has to go or not and she says it just feels like she does but doesn't. (not a bladder infection) There were a few other sypmtoms I read that desrcibed her perfectly but as I stated her bloodwork was okay????? Should I look into it further? She has never had strep throat that I am aware of but constantly used to complain of a sore throat for a bit. No fever or anything like that. I did take her in once and the check on her throat was okay. They did a culture when she was 3. Funny how right after that this all showed up..... Any advice would be greatly apprecaited on the pandas or tourettes.... As for the vitamins- I just received them two days ago and plan to start them the day after her clonidine stops. She is 5 years old and weighs 39 pounds. It states to take 10 of the TS Plus and then maybe 2-3 of the dph-epa. Also says to split up over the day. my question is that it says to start with 1/4 of the recommended dosage. That wouldn't be 2 or 3 pills......HELP PLEASE on this and also what side effects to look out for with the vitamins as her body adjusts to them. and how long should we wait to see an improvement. I ask this because I am told that they do not work for everyone and I just do not want to put her through a month of an explosion of tics if I do not need to (hopefully this will not happen when she is completely off the medicine) I know this has turned to be a book I have written. I apologize for this. Its such an emotional rollar coaster going through this and not many people I try and talk to can relate or understand it. I would take my little girl without arms or legs...I wouldn't care as long as I had her but my concern is for her now. I don't want her to be ashamed of herself. She starts kindergarden this year and I am just so worried right now that someitmes I feel like I cannot breathe! Thanks again to all of you on this board. I am not sure where else I would have turned if it weren't for all of you. Thank You from the bottom of my heart! Sincerely, Wendy