amy1

My daughter gets more tics with anticipation, anxious events. she tics SO much at the zoo, amusement parks, etc. anything new and sort of exciting i notice her tics get worse.

It's scary to read your post as it sounds like we have the same child! i wrote you earlier, but dr murphy's extensive bloodwork looked at things like toxins, liver function, etc. i do believe that DAN doctors do that other testing but am not sure. i do know that dr murphy and her partners combed my child's peds records and found every infection she had, lots of ear infections, strep, eczema, constipation, etc. They diagnose her with most likely pandas, ts, ocd and adhd although right now i think she's pretty mild and doesn't present with significant tics. our issue is mostly the sep anxiety and the attention disorder. the tics i can live with, it's the disorders that come with it! check out that book i suggested. also, sheila rodgers' book is most helpful!

Yes, my family is in total denial and still to this day thinks my daughter is fine and that PANDAS, etc is in my head. I had my eval report from UF (over 6 pages) and showed my sister. i am trying to be better and not caring what they think. they can think i'm nuts i guess. our parents generation didn't talk about anything and didn't question much and didn't go out and search for answers...keep on keeping on and try not to let them get to you!!!! [

YES, our daughter has a lot of rage that comes on suddenly and she gets really angry. I mentioned this to our specialist in gainesville and she was explaining to me that these kids have a lot to bear and take on all day long. it is very frustrating to them. our daughter has a lot of separation anxiety and the dr's were saying if that is your world that is so much to hold in yourself when you have fear like that. she was on prozac for a while and i must say it helped, but we did take her off of it. look at what the rage is---is it due to lack of attention/unable to concentrate, etc...another great thing to do is find a qualified counselor to talk to yoru son. it's not always feasible with the out of pocket costs and finding a qualified therapist who can relate to your son and understand all of the issues that these kids have. i spent months trying to find a counselor who understood ts, ocd, anxiety and none were qualified. the ones that were qualified were so far from our house and/or were too expensive. alot of my daugther's rage is due to the anxiety and the distractibility she has---she gets so mad when she does homework and she gives up and has a fit and is so mean to me that i die inside! know you aren't alone!!!!

I just wanted everyone to know that we went for our follow up visit/evaluation results meeting at dr. murphy's office at UF in Gainesville. They recommend a book called "Talking Back to OCD" by John Marsh. I have ordered it so i don't know if it's good, but i wanted you all to know it comes highly recommended.

get magnesium citrate. and have him take Omega-3 supplements as well as a vitamin with added minerals. read labels, get trusted vitamins. nordic naturals is a good brand. go to a health food store and read the labels as there are additives in some vitamins. clean up his diet---try to cook fresh, avoid boxed foods. also, cook with flax seed and sunflower oil. just a few things to try, but of course read all labels and keep a log of what you try and what seems to help your boyfriend. [

we saw dr murphy at UF as well. we have been for my daughter's evaluation and we go back in two weeks. i will learn more then. they took four vials of blood from my daughter---when i looked at the lab sheet i saw that dr murphy ordered MANY tests/screens with her blood---not sure what they all are but i know some were lead/mercury testing, etc. we saw a neurologist and were very unhappy with the lack of a treatment plan for our daughter and their disregard for supplements/diet--and we saw a top neurologist at a highly regarded children's hospital. I will know more about the blood tests on Nov 2nd when we go back to dr murphy to get results, etc. i can share that with you as well when i know more---ALSO, i asked the neurologist to test her blood and she looked at me and said "what would i be looking for? TS doesn't show up in blood"---they just don't get it, alot of them. and they want to treat the symptom and not get to the cause of it---

We were on prozac for my daughter's extreme anxiety. the tics continued (were weren't on a med for the tics) but the anxiety was SO much better. we were on the prozac and i wasn't aware of any supplements at that time. Then, when i started her on the magnesium citrate, coromega and a vitamin with minerals (and cleaned up her diet, although it's not that clean) we saw the tics decrease significantly. We went to NYC on vacation for a week and i got to the airport and realized i forgot the prozac. i called her psychiatrist and they said it wouldn't be a big deal if she misses a week. when we got back i weaned her off the prozac as i really felt like i wanted to try the supplements only. honestly, the prozac helped her separation anxiety/mood swings---BUT, i'm persisting and will check with my doctor at UF when we meet in a couple of weeks. i agree, it's so expensive for the DAN dr., etc. there's a great osteopath nearby but the eval alone could be $2000. i'm not convinced that i need to be more than i'm doing right now...keep researching and researching. hang in there!!!!!!

Coromega is the brand i use...i got it at the grocery store near the pharmacist---it's the omega 3 you need...you can also go to coromega.com Hang in there, my daughter is like your son. she can be so wonderful and loving and then will rage. My daughter was on prozac which helped a great deal but we recently took her off and are doing only supplements. i don't want to use the prozac unless i really have to, i will bring it up at my next dr's appt. You're a great mom, try to be patient...easy for me to say...it's so difficult sometimes and the swings are incredible. none of us are perfect so try to go easy on yourself---and try to get the breaks you need and take care of yourself. I find that if i run or exercise it's my way of "checking out" and feel better able to deal with everything.

hey itsme- yes i have a question. what do probiotics do? also, where do you get the nystatin? is that a pill? is that for yeast overgrowth? these may be obvious questions but i am curious as this may help us.

the OCD part is the hardest part, which in our case is of course due or goes alongside the TS. Our daughter is highly anxious and worries ALTHOUGH she is horribly disorganized and falls apart easily at home. getting her to do anything is so hard for me. math is extremely difficult. i had a tutor this summer and it went well but it was very expensive. i do think that kids with tics are very sensitive and have great senses of humor. Our eight year old has such an "aware" sense. she's also very funny...but i do find that i have to remind her. two steps are hard for her. she does well at school but at home she has a hard time. i have to say "go do this and come back"--then she comes back and i have to give her the next thing. she gets very overwhelmed. i asked dr murphy at UF why it is so hard and why she is so stubborn and emotional and hard to deal with. the other doctor said "it's so hard for her. her OCD and worries have her so occupied that she can't focus on much more, it's a lot on her emotionally."---so the question is how hard to be on them? i don't know, wish i had all the answers. I do think that the disorganization and anxiety is my hardest thing right now. and of course that affects academics. You are right, gentle reminders. that's hard sometimes as it is so obvious to me that she has to clean out her planner and put her things in her backpack the night before. but to her it's a challenge. it's hard to know how much to help and how she will learn. again, wish i had the answer for that one. i just work on doing it with love instead of in anger or impatience. some days are easier than others!

dr murphy at UF recommended "Nordic Naturals"--they are called "nordic berries" it's a multi with minerals and doesn't have all the added dyes/colors, etc that some use. nordic is a great brand. i also have a multi that my other child takes that is made by nature's plus and it's a gummy called Animal Parade. again, they are natural flavors. one child likes the taste of one and the other likes the other! but i do know that nordic naturals has a great reputation.

from our experience my daughter tics more at home---i think she is just more comfortable and she can "let her hair down" and be herself---when we have gone to disney or universal her tics seem especially high, maybe it's the excitement your son feels with the video games and he is at home and can let it out--- on the anxiety bedtime issue my daughter is so anxious at night, she asks me where i'm going when i leave the room, am i going to go outside, where will i be when she wakes up, etc. i get tired of reassuring her all the time as it doesn't seem to help. we go to church and one time i brought home some "holy oil". i had told our priest that we were struggling and he gave me some to use with her. sometimes we put it on each other's heads and pray for each other. that seems to help and reassure her.

my daughter, looking back (she's now 8), was always so sensitive to clothing and didn't want to wear certain things as she said they were "itchy" or "scratchy" or the tags were bothering her. Of course i was impatient and had no idea what was going on. she also had/has excema. i wouldn't panic or anything, she may just have sensitive skin---our tics didn't surface until she was over 5. i do wish i could go back in time and not be so insistent that she wear certain things! try not to worry and be understanding if she doesn't like a certain collar, tag, etc. try not to worry, it may be a normal toddler/girl thing!

you make an excellent point---all of our children are so different as are our families, schools, etc. I agree with you totally. The public school inclusive classroom is where we at at this point in time as well and I am determined to stay involved. Who knows what tomorrow holds and we'll adjust as needed. I admire your determination and support!

Yes, get a second opinion!!! The neurologist we saw said the same thing and told me there's nothing you can do about it--NONSENSE. if you can get an appt with an environmental doctor that's a start....in our case we went to a neuropsychiatrist at UF in Gainesville. Try, try, try and ask around, become a detective. Check into UGA and see, if not UF has a great doctor. Get the Sheila Rogers book --- it is great and is a huge help to new people like me! If i were you i would immediately go to the health food store and get magnesium (i have the chelated kind with calcium made by bluebonnet, in liquid) and the coromega (you can get this at your grocery store). i give my child one tablespoon (she's 8) of the magnesium and the whole coromega pkt daily AND a good multivitamin with minerals. at least you can do that to start....we are only on that right now and she has gone from severe to mild. If i can help i am happy to do so, we are new at this too but UF was great. PS, look at food allergies, etc too!

We learned that something was going on when my daughter was in 1st grade but she was diagnosed with allergies so we didn't say anything. Then in 2nd grade when she worsened over a week (suddenly!) her teacher called me and told me something wasn't right. Right before this year (3rd grade) we made an appt with our principal and sat down with her to explain the issues...i was very hesitant to use the word tourettes as you know how people react when they hear it...my daughter was mild at the time and i explained that we need her to be with a teacher with experience who is structured and caring...we got a fabulous teacher this year. I told the teacher that if her symptoms worsen and start becoming and issue in the class that i will come in and talk to the kids about TS/Tic Disorders, etc. Right now I am trying not to label her as i have told a few friends...some of them learn the news and then start staring at my daughter to look for the tics. I have had to tell some dance teachers that her tics may come and go---most of them comment that they have never had a child with TS and what does that mean, etc. Most of them assume she will be verbal and disruptive. That's such a hard stereotype to break. Knowledge is power and i believe that with other kids it's important to educate in a matter of fact way---i heard my daughter on the phone the other day. her friend was telling her that she learned she has to get glasses and she was nervous about what the classmates would say. I was so proud of my eight year old, i heard her say "it's okay, everyone is different. I have tics. we're all still special"

Thank you so much Laurie and Patty---those are great ideas. And thanks, Kim. My child does have ADHD and that is helpful to know. What is SO funny is that i found the brand Namaste yesterday and we made the pancakes this morning---they were delicious. I also made the brownies as i wasn't convinced they would even taste like a brownie, but they were delicious! I appreciate the ideas and the brands --- it makes it easier for me. we don't have a whole foods here unfortunately but our native sun store has some nice selection. I don't have ANY idea what my child is allergic to---we got back to dr. murphy on November 2nd for all of our blood test results....alot of you say "if your child is allergic to"---should i also be going to an environmental doctor in addition? i don't know if dr murphy's blood test looks for that stuff---i'm so new at this i am in the weeds!

I am new in this journey with my child and tics/ocd---i've searched the internet, gone to neurologists and have been to see Dr. Murphy at UF. I am amazed at Sheila Rogers' book. I orderd it via amazon and it came---i couldn't put it down. It goes through everything we all talk about and then some! also, it focuses on finding triggers and presents real people with their stories. i related to so much of it. What a great resource---if you haven't read it i encourage you all to get it!

i will have to check into this too---dr murphy at UF told me coromega is her favorite and nordic naturals for daily vitamin and minerals

Caryn & Q's mom: Thanks so much for the link---i will check it out for sure. and thanks for the practical tips and actual examples. It is all overwhelming and seems to require a lot of cooking which i'm not always making time for! i appreciate any recipes, examples, etc----i struggle with the lunch box each morning!!!

Can anyone go through a sample of what they feed their kids in one day? just examples..like what you put in his/her lunches, what is best for breakfast, etc...i need ideas for this casein free, low corn syrup thing! it's so overwhelming and i understand it but would love to hear actual examples of what you feed them in a lunch, etc. thanks!

there's a section in sheila rodgers' book about this---one family found that getting a LCD TV helped dramatically----something about the color tube and the flashing in traditional tv's---

Hi Caryn...i just checked the bottle and one of the last ingredients is absorbic acid. this product is yeast and gluten free as well as no sodium and barley. It's a strawberry flavor (there are other flavors, orange, blueberry, etc) and my daughter takes a tablespoon by itself, no need to mix it. she just drinks water after and chews vitamins. the coromega (omega 3's) she doesn't like so i mix that in applesauce or something like that each time i give it to her. She definitely doesn't like taking any of it BUT i got the magnesium and fish oil capsules for myself and i take them at the same time she is taking them. it's not ever easy and she she is grouchy sometimes about taking the supplements, but what can you do---you have to do it!

I was told to get Magnesium Citrate---found it at Native Sun healthstore---it's made by Bluebonnet and it's liquid and flavored---she takes it fine. she HATES the coromega (omega 3's) but she has to take it