amy1

Can anyone out there shed light on what i can do about our daughter's extreme mood swings and tantrums? She's 8 years old, recent diagnosis of TS....she was on prozac for anxiety and mood swings and it helped a lot...but then i tapered her off and we decided to push the supplements. her tics are much improved but the attitude problems, extreme frustration, and mood swings are back and in full force. she does well in school with her teachers so it's more of an issue with us at home. She also has ADHD so it all contributes---any books out there to help me or advice? Weekends can be so long and frustrating for all of us! Ideas??

My daughter is 8 years old with a recent diagnosis. I just ordered and read the book by sheila rodgers---what a great resource and really gives you hope....hope to find out what is causing it, how to treat it, etc....i am no where near a total understanding but i am trying hard to find answers. stay strong and go with your instincts. we went from a traditional neurologist telling us to "suck it up and know it's going to be a long road and there's nothing to do about it" to finding a more holistic approach with doctors---there are good doctors out there who are open minded...it may take a while but investigate it. hang in there!

where do you get kids calm? healthfood store?

Frazer: "I will not leave you comfortless, I wil come to you"-John 14:18 It sounds as though you are in alot of pain and you are feeling so alone. Unfortunately we can't pick our parents or any other members of our family! We all have issues in our lives. This can make you be stronger. You can rise above it. I would urge you to find a church of your choice. Find one and ask about some groups. Many churches are there to offer you support. This may be a group or just talking to a minister or priest. I was raised in a family of alcoholics and was left alone during my childhood. Without going to a church and getting help i would've felt so alone and scared. God loves you and wants to help you. Ask Him---have faith even though you have questions. I have met so many friends at my church. I rely on church to keep me going. Try it...and remember you are not alone. I am praying for you today.

i was re-reading your post this am and a few things came to me---we had about 3-4 months of intense tics...now we are at a mild stage. i know how stressful and scary that intense time is...are you doing magnesium and omega 3's? during the summer my child had so many tics during bible school. she came home and told me she was sick of kids asking her what was wrong with her...first she told them she had tourettes, then they want details, etc...so finally i told her it was ok to say it was allergies during that week...BUT i would suggest getting with your son's teacher and i think educating the class on what tics are is great...you can go in for 10 minutes or so and explain to the kids that tics/tourettes is not contagious, doesn't mean they are not smart, etc...and that it's like a sneeze that has to come out...etc. i really believe that education is power and that the kids will love him and feel more comfortable if they understand it...it's scary when you don't understand it. your son may feel comfortable talking to the class about it or having you do it---we aren't at that point as school just started and my daugther is mild right now but her teacher (my daugher is in 3rd grade) is aware that if things increase and it is appropriate that i can come talk to the class, etc. you also, if you haven't already, do a quick printout for your son's teacher on what TS is----nothing overwhelming, but just a page on it. that way they are aware. so many teachers aren't familiar with it. it's funny you mention video games, etc. my daughter is in a "laptop" class in the 3rd grade public school. it's fabulous. i think the computer actually helps her with the tics and helps her channel her energy with learning...just works for us. hang in there!!!

yes, keep calling and try to get a live person if you can, not sure the hours they answer. i am sure by now you are very persistent at this stage of the game! keep calling and once you get the appt they will send you paperwork, etc.

the reason it takes so long to get an appt is that she only does clinic on fridays --- and treats half a day i think, so that is what the delay is. we don't know if our daughter has a strep link, waiting on blood tests, etc. Our daughter has a history of a lot of strep and ear infections, etc... [

PS, i give my 8 year old one packet of the coromega (it's just like one packet of ketchup--) i put it on a spoon and stick a little popsicle piece on top and she takes it fine---of course she complains but that's what kids do! i also bought fish oil capsules for myself so we take the dose together.

check coromega.com i found it at the pharmacy. it's a pudding like consistency, natural orange flavor----no sugar, starch, gluten, etc. i think i paid $18 for a 30 day supply. your grocery store probably carries it--that's the one dr murphy told me to get.

Michele: We live only 2 hours away from gainesville and i went to college there so i am familiar with the area...we had that 8:30 appt as well. we left in the morning so we didn't get a hotel room...there are a few hotels right across from shands that are really convenient and you can easily walk over...not sure of their names but they are on archer road, right near dr. murphy's office. we met first with a dr named dr. segurra, super nice lady --- took our history. the office is really nice and there's a playroom so the kids can go play while you give a history. she then talked to my daughter (not murphy but the fellow dr) for about 30 mins. then they returned and segurra went to meet with dr murphy for about 45 mins---i sat wondering what the heck was taking so long---they were literally reading all of the records from the pediatrician, neurologist, etc. they both returned...i met dr murphy. she was amazed by alex's history of strep infection, allergies, skin allergies, ear infections. right now my daughter's tics are mild, they were bad this summer. she ordered a lot of blood tests so we haven't heard back on the results but she is checking immunity, etc. she suggested magnesium and coromega. and a better diet. but really i have to wait and see what the test results say...they also did a quick strep swab. i can't say exactly how they treat b/c we aren't on any meds and we don't have any test results back. we have seen two pediatricians, one neurologist, a psychiatrist and dr. murphy. so far i got more info from dr murphy-----the director of neurology for a hospital in jax told me to "avoid support groups and realize it will be a long road---and to realize that diet, supplements, etc have nothing to do with ts, it's purely genetic". the pediatricians said it was only allergies and habit. dr murphy and her fellow were the only ones i have talked to that didn't think i was a nut case---and they are open minded and take the WHOLE history and want to find the CAUSE of the ts in the child, not just treat the symptoms. i do not debate that there is a genetic link, but i believe there is a pre-disposition and that environment/infection/etc plays a role. it didn't take me long to get an appt, but they do not take our insurance which is a bummer! but you know, it's your child and i think God will provide and will take care of us---i think you are doing the right thing by taking your son there. my husband thought i was overly worried, affected, etc...but after we met with the gainesville docs he said "finally, someone wants to look at her blood, check what is going on, etc" it took a long time for my husband to just acknowledge it was TS---he thought it was allergies or visual problems. i was a speech pathologist and have been around kids with ts although i only worked with adults---i knew what it was and it made me so frustrated that i couldn't get anyone to verify what we saw. i finally took a secret video of my child watching tv --- tons of tics...took the video in to the neurologist and pediatrician---that finally confirmed the diagnosis, as alex didn't present with those symptoms at her visit. let me know how the visit goes....i think it is worth the travel and money---you will have more hope i believe....let me know if you have anymore ?s---

we saw dr. murphy last week---for my 8 year old she told me to go to the local pharmacy and get "coromega". i found it at our grocery store, it's a 30 day supply and they are like ketchup packets, liquid type. go to coromega.com. so far my daughter takes it and i mix it with a popsicle and she eats it fine---hope that helps. PS dr murphy is great

OH MY! we just had our first appt with dr murphy last friday! i finally have hope for our child!!!!!!!!!!

it's hard to get my child to settle. this is part of it all, hard to calm them and get them to that state of relaxation for sleep. i feel i have tried so much too---right now (she is 8) i have her read to herself or i read and we talk a little in bed, then we do our little prayers. sometimes i play some calm music starting around 6pm. there's a great cd that's calming. the cd is by the artist snatum kaur...super relaxing for everyone in the house.

can someone shed light on the epsom salts? what is that used for with TS? i am confused

Hang in there. We had a 3 month span of constant tics. I thought it would never end and found myself afraid of the next day. The great dr i went to calls them "flare ups". My daughter is mid right now. You really need the magnesium citrate (it comes in liquid) and the omega-3s. i bought the omega-3's called "coromega" at our Publix grocery store...looks like a ketchup packet you can mix it with something. Watch the trans-fats. Also food coloring in foods. In our house instead of making my daughter feel like she had this horrible illness and restrictions i simply told her we were all going to clean up our diets and we are all taking vitamins. I know you are having restless nights as i do. When the sun goes down i start worrying...it's hard to fight. I am new at all of this stuff too. another great site for energy and well nutrition and positive thinking is jongordon.com. he had written some books, not TS related, but just good advice on living more healthfully.

Thank you so much for the link. I am very open to using supplements but feel overwhelmed at it all---how much to administer, if i can get it in liquid (she's too little to swollow pills). As i said, we are doing calcium and zinc and omega-3s currently as well as a general vitamin. It's funny---since she was a toddler she has always had "itchy" tags in her clothes, trouble with socks feeling "right", etc. Back then i think i forced her to wear it and thought she was just being difficult---hindsight, huh? thanks a million for your advice. was it difficult to get your son to take so many supplements at first? i feel like i have to do a lot of coaxing to get her to take them and we are only doing 3....

Thanks so much. You really have to learn to take matters into your own hands! After two years of being told my daughter had a post nasal drip i finally smartened up and acted on my instincts. I will look at old postings for nutritional info. I don't know if B vits come in liquid or chewable---my daughter can't swollow pills. i found a great mag citrate liquid and a omega 3 pudding like packet.

I have just posted some questions on nutrition. i do think there is an allergy and/or strep link. Also, my daughter asks each night where i'll be in the morning...she also fixates on when i'm going to pick her up somewhere and has some irrational fears, major separation which she has never really had. my neuro is open minded and is doing alot of testing with her blood. the OCD came on right when she had significant tics this spring. the spring prior we had noticed the tics. it's all new to me and i live with the fear of tomorrow...what if it goes back to the way it was, etc. her triggers i think are caffeine, stressful situations, crowds/new things, group events. i never believed it before but i think that supplements are the way to go as well as providing a secure environment at home. i used to get mad at her for being so anxious and now i have to be a little firm but loving. the neuropsych i saw said that the fears are almost worse than the tics!

Hey all...i am new to this discussion board. My daughter is 8 and in the 3rd grade. She began mild tics in first grade and things exacerbated in April of this year. We saw a neurologist who diagnosed her and told us it would be a "long road" and that there is nothing out there cutting edge. I had a PANDAS article at the appt and they said "WHERE DID YOU GET THAT?" "IT IS NONSENSE". we saw an amazing specialist last week at Univ of Fla. They looked at my daughter's records that are marked with strep throat, ear infections, antibiotics, eczema. They are doing various blood testing. They recommended Omega-3s and Magnesium which we have started. Can anyone give a rundown of any other minerals i need to incorporate? ALSO, what about diet. Do you all avoid yeast? This is new and i am trying to do all i can. Thanks for your support.

I am new to this discussion board but find it all so interesting. my daughter is 8 and was diagnosed (after i fought and convinced her pediatrician that it was not allergies!) in april. a trip to universal studios brought on a TS flare (as i call it)---we saw a specialist at UF and we are now on omega-3s, magnesium...too early to tell but can't hurt. what is the epsom bath for? any other diet/nutrition help from anyone????