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laurena82

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Posts posted by laurena82

  1. My 6 yr old daughter started having slight involuntary movement, jerking head side to side but now one week later she does it mult times an hour. She jerks head side to side very hard and quick, she nods head forward and backwards and both arms and legs jerk. None of the movements are in a rhythm or in a sequence. Her EEG was neg for seizures but her sleep study showed obstructive sleep apnea due to enlarged tonsils. We see a neurologist for our first visit 7/16/12......the sudden onset of all these moments have us worried sick. Obviously it looks likes Tics to me, they onset in the morning but get worse as the day goes on and its terrible in afternoon and at night then disappears in her sleep. She doesn't really do anything noticeable until she is with family at home, in other words anxiety doesn't bring it on. She sniffs alot to.....so vocal and motor tics right? Why all of a sudden the explosion of tics when a few weeks ago she was fine without any problems. Could a virus last week followed by ear infection start this?

     

    The infection so near to onset would definitely be a red flag to checking out strep/etc.

     

    Re: the exertion increasing them--is this exertion something like running outside? Reason I ask--my sons tics would explode expodentially when certain grasses/trees were in season---and, of course, worse when outside in it. (Something to keep in back of mind, anyhow, esp if symptoms get worse during similar months each year)

     

    BEST WISHES!

  2. I'm sorry I havent been reading boards much-----

     

    I've been through allergy/food elimination diets---

     

     

    1. Generally you should allow 7 days for foods to clear your system when eliminated---they claim longer--10 days to2 weeks for dairy.

     

    If 26 days into it no improvement with those eliminated---I dont think youre gonna see it.

     

    However:

    2. (this is big)---

    When you reintroduce foods----generally second meal of it (same day) you'll see reaction already---although some foods are up to 48 hours-------------SO ONLY INTRODUCE ONE AT A TIME,so you know which causes reaction,...but here's the (this is big!) part-----THE REACTION YOU GET WILL BE THE SAME SYMPTOMS----- ONLY GREATLY MAGNIFIED--- (and, from my experience----I mean GREATLY magnified!! ---> there will be NO DOUBT IN YOUR MIND that you are having symptoms.....

     

     

     

    Food allergies are VERY frustrating to figure out/deal with...........((hugs)) &BEST WISHES!

  3. Hi Trinnie--

    About 15-20 years ago I took my son to a chiropractor who did applied kiniseology for food allergy testing----------

     

    we logged what he ate for 1-2 weeks,...then anything he ate more than 2-3 times/week we brought food sample and Dr did AK testing when that food was on his tongue. It identified ?? 6- 8 things probably--------we then eliminated all of those---> and he had DRAMATICALLY lowered motor tics. (unfortunately he still had some vocal tics. It cost $90 as I recall.

     

    He also tested via putting vitamin supplements on his tongue along with the "allergic" food to "neutralize" it----we gave him those vitamins for awhile,........but in our case, anyhow, the food avoidance was much more noticeable difference than any supplements at helping.

     

     

    BEST WISHES!

  4. setscret

    wood can be full of yuck chemicals that are added when they process it, so this is what may be triggering the tics...also tearing up the old carpet may have released mold spores, formaldehyde and just lots of dustmite into the air....

     

    you may want to get a HEPA filter at least for his bedroom so that he can sleep in more purified air!

     

    (off topic, ....well, somewhat :))....

     

    I just noticed this in your signature line:

     

    **" the microbe is nothing; the terrain is everything."** Louis Pasteur

     

    How cool is that! (I never heard that quote from him before!) :)

  5. Hi Trinnie---

     

    Yes, the waxing and waning of symptoms makes it SOOOOO hard to figure out if something helps....or is just waning then....!!

     

    Plus, as others mention----what's great for some seems to do next to nothing (or make worse!) for another! augghhh!!!

     

    I also have heard that chiropractic docs can help too, but not sure what they would do and don't want to be in a place with treatment that would require us to be under constant therapy or visits. I'd prefer to find what it is that helps him and go from there on our own.

     

    For my son, ....food allergies was huge trigger---and what helped me identify major ones was finding a chiropractor who did "applied kineseology" to identify food triggers-----I kept food diary of what he ate for one or two weeks----then anything he ate more than a few times/week, I brought samples in, and one by one, he put on his tongue with muscle testing. With foods that decreased muscle strength, the chiropractor then put supplements on his tongue to see if strength increased with these, and those that did we started giving, as well as eliminating the food triggers.

     

    FWIW--in my son's case---eliminating food allergans was WAAAYYYYYY more successful at noticeably decreasing tics than adding any supplements------------BUT, as you can see from others posts--------others have had different experiences!

     

     

    ANYHOW--re: the chiropractor, it cost me $90....but that was about 15 years ago. At that time, anyhow, most insurances didnt cover chiropractic---so they were pretty reasonable with charging rates people could afford out of pocket............but not all chiropractors are as wholistic as others-----

     

    sigh....you have to shop around with all of these things................(((((((((((((HUGS!!!!!))))))))))))

     

     

    (PS: as another posted on here recently----pollens, etc might be a consideration if you noticed symptoms worse this time of year usually: in summer/fall on annual basis?? ??)

  6. Hi Miss X--

    Welcome :)

     

    I'm not any expert, but just wanted to say "hi" and "welcome" to you also---as I just looked in to see what was new here, and the board doesnt look very busy so you havent gotten many responses yet.

     

    Chemar has and will give you good advice----when you read here, you'll see so many have had experiences of degrees of success with so many different things----it IS hard to know where to begin.

     

    From your history, the PANDAS connection seems relevent, perhaps. Another thought---since so many things to try include diet modifications and dietary supplements---eating a "healthier" diet of more basic natural foods never hurt anyone---that might be a simple place to start. (If/when you want to avoid certain food allergans, you pretty well have to be eating basic foods,as commercial foods have so many additives/other allergans in them---eg food starches/corn syrup/whey/colorings/flavorings etc---you cant really tell what youre getting/avoiding until on more basic natural foods diet anyhow) And then while you're doing that--start reading up on other things.

     

    Also--it is intriguing re: the lack of symptoms ages 11-15----------any thoughts you have on that? Changes in enviroment/living situation? (all I can think of is hormone related?)

     

    Consider also time of year--------are your symptoms worse one season vs another?

     

     

    ((((((((((hugs))))))))))))) and best wishes......!!

  7. "I...I...I, I don't, I don't, I...I don't like broccoli."

     

    That is exactly how it was with my son.

     

     

    "Hey...hey.......hey mom,.... hey mom...hey mom....hey mom I.....hey mom I went outside and did this, that and the other thing etc etc etc (completely fluent..)......".

     

     

    Also,...when he was really excited....he would have complete blocks, ..where he couldnt get ANY sound out at first.

     

     

     

     

    The technic they taught him that actually worked had him deliberately saying the first words VERRRRYYYYYYYYYY slowly and dragged out....and I think even starting with saying the first PART of the word even slower.................and then as the sentence went on, he could pick up the pace.

     

    But the first few weeks of this therapy he was only saying one word at a time he read VERY slowly and drug out......then I think it progressed to two...then a phrase....a sentence.....

     

     

    He was about 9 or 10 at the time.

  8. Hi KD--

     

    ((((hugs))))) to you!

     

    I saw your post, and :

     

    (Our little guy has articulation problems, by the way, as well, and has seen a speech therapist for over a year.)

    grabbed my eye---

     

    I'm not sure what type of problems these are, but I went and dug up an old post of mine for you (re: stuttering at TS).

     

     

     

    My son's speech problems showed up as blocks primarily when he would start a word or sentence.

     

     

    Not sure if similar to yours at all, but my (frustrating) experience was that the speech therapist wanted to "blame" the speech problem onto the TS, as being *nothing* she could do about the TS---I should put him on meds----and, as a result, he went 4-5 years with severe speech problems, til I took him to a different speech therapist---and he learned some techniques that actually helped him become fluent.

     

    He's 26 yo now, and has been completely fluent since a year or so after he started with that other therapist.........

     

    ((((more hugs!)))) and best wishes!!

     

    (A FWIW story for you, anyhow.......)

  9. (Preamble :);) : "stuttering" is listed on all of the TS symptom lists as a "vocal tic"...my son had diagnosed TS as well as stuttering for many years)....

     

    Hi everyone,

     

    I just found this site the other day...

     

    My oldest son (age 24 1/2 now) suffered (alot, IMO!) with tourettes as a child. In retrospect, the hugest struggle was with speech.......and there are some things I WISH I had known sooner....(ALOT sooner!)

     

    1. "stuttering" is not just "p-p-p-p-p-please"......

    "stuttering" can also be "blocks" where you cant get any sound out to even start a word....

     

    (so he struggles and struggles to get the first word out....but once done, the entire sentence is completely fluent...he had this for years before I had a clue what it was)

     

    2. (and this is even more important,....or was in my son's case):

     

    Not all "speech therapists" are the same!

     

    Stuttering etc is known as a "dysfluency" (latin= "difficulty" with "fluency")....and speech therapists can take ADDITIONAL TRAINING in that field........apparently (OBVIOUSLY>>>>>Because it happened to my son)....some speech therapists become a speech therapist WITHOUT this additional training in methods that are SPECIFICALLY GEARED to "dysfluencies".

     

     

    Short history:

    (OK..it's not really short...it's long and painful B) ...sigh...):

     

    He started talking at a young age. HE was talking in full sentences before age 2. FOlks would remark how CLEARLY he spoke for such a young tyke. (not sure if this is relevent at all?)

     

    At age 2 1/2 (at end of summer....if that means anything....later, allergies had such a role in TS tics, I wonder....?...and his allergies always flare at end of summer....pollens then.......hmmm...??.....)...anyhow, he started with *typical* stuttering..."p p p p p p lease"..."MMMMMMMMMom" etc.

     

    This lasted ? til the winter it pretty well subsided.....I consulted a speech therapist acquaintance, who suggested reading nursery rhymes slowly with him, and modeling my own speech to him slowly......it helped (or else went away on its own)

     

    HOWEVER.....

    he did develop these "blocks" where when he tried to talk...no sound would come out......(I Had no idea that was "stuttering" still). As the years went on , this becaome more pronounced....definitely by kindergarten age....but I still didnt know it would be "stuttering" or something a speech therapist helped with....(? call me dense? LOL..). Kindergarten teacher didnt even notice it....large class....he's quiet (cant get any sound out) until he talks....then, he's fluent when he DOES talk.

     

    Then I happened across a book at library re: stuttering....and realized this WAS a form....it's just the vocal "block" was occuring BEFORE the word...rather than after he started saying word(as more familiar 'stuttering" is)......

     

    So, I contacted school and asked for speech evaluation.......hah!

     

    I got a phone call from the speech teacher, who said she got my request, and kindergarten teacher said child had no speech problem, and I got a whole long song and dance re: parents can read books and that's dangerous because you "imagine" your child to have such things, yada yada...but, she'd talk with son and see anyhow.....

     

    HAH!

     

    Yes, ...so, the NEXT phone call from her she's telling me how she talked with him, and in x many minutes he had Y many "blocks"....and that is VERY SERIOUS amount of stuttering blocks, and she will make up IEP and start him in speech therapy so many times a week, etc etc etc.

     

    geesh.

     

    sigh.

     

    But, at least he was now going to get "help".

     

    hahdhahahahahahahahaha....

     

    Well, 5 years later, ...at the end of 4th grade....he was no better....those were terrible/painful years watching him suffer.....(and why I want to be able to offer any help or support to others here going through all of this stuff now!)

     

     

    OK....of interest perhaps...? (I havent read much on TS etc since he was mid teen years and it started subsiding...YES! things finally got GREATLY improved! :) )

     

    ANYHOW...of interest, perhaps, ...both he and his brother (my middle son) got a full blown case of B strep (they had the whole "scarlet fever" deal....the strawberry tongue, desquamation of fingertips, etc....heck, this poor kid even had desquamation of his penis/scrotum! ) at age 5 also

     

    By first grade....he had these noticeable motor tics...facial movements, etc.....

    The speech teacher assured me these were "secondary speech characteristics"...that kids who stuttered would do some funny little movement...and ..voila! they were fluent that time! So, ...they'd start doing that movement everytime they tried to speak.....but, ....alas...stutter again...so, then they'd try another movement...voila! it worked....add THAT movement....and, ..pretty soon, they are doing this whole facial movement/foot stomping thing everytime they try to speak.

     

    So...OK, ...this made sense.

     

    But...eventually I started noticing....huh......HE"S MAKING THESE MOVEMENTS WHEN HE HAS ABSOLUTELY NO INTENTION OF SPEAKING!

     

    hmmmmm...strange.....

     

     

    eventually...one couple we knew saw him doing that , and said, "that looks like TS".....and I, of course, said, "oh, no, no, no...those are SECONDARY SPEECH CHARACTERISTICS" and went into the speech therapists drill........

     

    but, somehow, it must have made me question it all....

     

    somehow (there was no interet...and I live in VERY rural area) I got info onTS.....GOSH! those symptoms fit him to a T! I also got a video tape from somewhere (I think it was tourette syndrome foundation or something? ) that showed kids with TS and went over the diagnosing criteria...I think it was a training tape for MDs, actually....to help family MD's identify it and diagnose it....

     

    anyhow....I knew/believed it then.

     

    I read up on it, got newsletter from that TS foundation.....and they had a kind of sidegroup forming on "alternative treatments" for TS....with its own newsletter...which was very helpful.....(this later morphed into Latitudes)

     

    I brought him to pediatrician, who agreed with diagnosis...and suggested she was familiar with clonidine (catapres) cause she used that with ADHD patients, and it was a drug for TS, ...she could start him on that then refer me to neurologist for follow up...

     

    I was real hesitatnt on drugs......

     

    tried every "alternative" thing I could....because, you'd see some relief......but, never the stuttering relieved.

     

    AND....hah!....once the TS was diagnosed, and I "educated" the speech therapist on it....she basically washed her hands of expecting him to improve, "well, the stuttering is caused by the TS...and I cant do anything about that "......

     

    By 3rd grade...we had done all of this food allergy stuff.....he had almost full relief from MOTOR TICS by (completely) eliminating offending foods (VERY difficult in real life.....VERY DIFFICULT!!)...but he still had the vocal tics/stuttering

     

    So, ...finally decided we needed to try to meds....if it would help his vocal tics...it would be worth it.....

     

    Tried both Clonidine (catpres) and Haldol (haloperidol) ....both worked on motor tics, but not vocal tics. (NOTE: I would NOT recommend Haldol to anyone...because risk of Tardive DYskinesias..."permanent side effects".....IMO< you need to SERIOUSLY weight benefits vs. risks there)

     

    EVENTUALLY....went to using catapres for motor tics, because food avoidance was SOOOOOOO difficult (FWIW: we did try the allergy neutralization drops....didnt see results with that)

     

    He REALLY strugged during 4th grade....sigh....long story, but at end of school year, I started paying out of pocket to take him to speech therapy at local hospital where a speech theraprist TRAINED IN DYSFLUENCY TREATMENT worked....this started in May....by september.....he could speak with out the "blocks".....he just needed addtional practice in remembering how to do it.......and within a year.....he wasnt "stuttering" at all anymore.....[in fact, his new teacher at school wasnt aware he had ever had a problem !

     

    He continued on the catapres until about ? age 14...the neurologist one time said, "you know, he's on such a small dose, he probably doesnt even need it"...and so as a trial we took him off...and he's been off since. He had told me that quite often kids "outgrow" TS....and I thought it was pie in the sky to believe this....

     

    but, apparently it CAN happen....because it did..... (yea!)

     

     

    In retrospect...

     

    I just wish EVERYONE/ANYONE involved with "speech" problems as a vocal tic (or not) could know that ALL SPEECH THERAPISTS are NOT created equally....and, hah...IMO, my son certainly had a disservice to him by the school ST not recognizing that she wasnt adequately trained to handle him and recommending treatment elsewhere.

     

    {{{{{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}}}}}}}}to all of you moms who are doing all you can to help your wonderful children right now....

     

     

    If I can help just one mom get relief sooner for her child...it is certainly worth it....

     

    it is SOOOOOO painful to sit by and watch your wonderful child suffer like this......

     

    BEST WISHES to all....

     

     

     

    Feel free to reply here or PM me if there's anything I can help you with or (?) direct you to.....

     

    again..."latitudes" was a (new) monthly newsletter back then....and SOOO helpful.....I"m SOOOOOO glad to see it has evolved to thiday!!s level of support too

     

     

    PS:

    IN RETROSPECT....

    I wish I could remember more about his OTHER vocal tics.

     

    He most definitely DID have this high pitched "hee" "hee" sound he'd make. I cant remember others? Obviously I was calling the stuttering a vocal tic, and so when I say the catapres and/or allergy elimination almost completely elimintated the MOTOR TICs, but not the VOCAL TICS....the BIG issue in my mind was always the STUTTERING........as when he couldnt get any speech out....wow....was that difficult....

     

    IN RETROSPECT....I wish I could remember if I felt the "hee" "hee" and other "vocal tics" were reduced/eliminated with catapres. I know the stuttering WASNT affected at all, and I know the neurologist confirmed that vocal tics are MUCH harder to eliminate than motor tics.

     

    BUT NOW...(again...15 plus years later retrospect)....I wonder if the catapres/etc DID suppress more of the "non stuttering" vocal tics than I recall? (I was just so focused on the stuttering aspect, that elimination of the "OTHER" vocal tics would be positive.......but not the solution I was trying to get to,....KWIM?)

     

     

    Thanks for this post. My daughter has stuttered for about 2 years now and has developed motor tics over the past 6 months and vocal tics in the past month. I always thought that there was something a little different about her stuttering, but the speech therapist said it was just run of the mill stuttering. We did the Lidcombe program for about 6 months with very little improvement. The most improvement I ever saw in her stuttering was when we started her on GABA for anxiety. It almost completely eliminated the stuttering for a couple of months, but then it came back full force. Strangely, it seems that the stuttering has improved in the past month since the other vocal tics started. I'm really pretty sure that the stutter is a tic. The speech therapist wants me to get a neurologist to confirm that the stutter is a tic, but I seriously have doubts that a neurologist can do that.

     

    Do you remember the type of therapy that finally worked for your son's stutter? The speech therapist (who specializes in stuttering) is willing to try something different and I'd love to know what helped your son.

     

    Thanks so much.

     

    Sue

     

    Hi Sue--

     

    I'm sorry I didnt see your reply to this until now. I havent been on the board much, but I checked in and saw someone else wrote re: stuttering, and I went back to try to find an old post to link to her (although I dont know how to "link" posts, either!)---at least this way I can *bump* it up on the posting list--------

     

    RE: what type of speech therapy----

     

    I dont know the name of it, but it involved teaching him to start his word/phrase R-----e------a-------l------l----y slow----------he had to deliberately drone (was that what he called it? ) the first few words out REALLY slowly and drawn out.......then, as he got into the sentence, he could pick up the pace. My son's "blocks" were primarily at beginning of sentence.

     

    What I DO know is that the speech therapist who helped him had additional training in "dysfluencies"----that the therapist at school didnt have---nor did she seem to know she didnt have the right training-----------once she learned of "TS" diagnosis---it was like she washed her hands of being able to help him .."oh, he has TS---I cant do anything about that"-----so, nothing happpened for abour 4 plus years.........

     

    I'm glad your therapist is willing to look into other things. I'm sorry I didnt see your post sooner.

     

     

    As I recall, at first he had simply a list of words that (I think?) he had to say while looking in the mirror at how he said them SLOWLY....

     

    I will PM you also........

  10. Very interesting!!

     

    We live surrounded by corn and other crops. And my son's ticcing symptoms have been more noticeable in recent weeks, just as they were most noticeable this time last year. I never made the connection.

     

    Thanks!

    Chris

     

    Yup--corn starts tassling around now....well, or sooner, depending on your location I guess.

     

    BEST WISHES!

  11. I have been on 0.025mg of Clonidine nightly for about two years and it has greatly reduced my tic.

     

    Please note this is a very small dosage; it is 1/4 of a 0.1mg pill.

     

    I started on 0.05mg (1/2 of a 0.1mg pill) but I was having some strong side-effects.

     

    I weigh around 160 for reference.

     

    Seriously, 1/2 a pill put me to sleep. I have no idea how people can take multiple Clonidine pills per day, although maybe if your blood pressure is high to begin with it might not have such strong side effects (since Clonidine is a high blood pressure medicine).

     

    I know this is entirely anecdotal, but I swear that when I eat pomegranates (or rather, their seeds), it also helps reduce my tic. Unfortunately, pomegranates are sometimes expensive and not always in season or available.

     

    It is hard to find information about medication to control tics, but I spent a great deal of time reading studies and journals and other sources and have compiled everything I found here into one page for reference. Sorry the website design is kind of ugly. I know I need to clean it up a bit:

     

    Tourettes treatments

     

    That link will take you to the page. Everything is arranged by drug type. Hopefully it will help you if you're looking for more information (and so you don't just blindly take Haldol if the doctor suggests it as a first line of treatment).

     

    I've been doing the alternative route since Oct 2nd. I know the day, because it was the day I had such severe tics that I decided I'd do whatever it takes to solve it. Prior to the alternatives, I was on tenex, clonondine, then finally went to tetrabenazine which is an orphan drug approved by the FDA only for Huntington's disease, but known to help with TS and NOT lead to the possibility of tardive diskinesia (probably misspelled). Note, that I had dropped all meds around June of 2010 as I somehow went from what was mild OCD to somewhat rough OCD and I finally had to start taking OCD meds as well - and for some reason the combo of tetrabenazine with the OCD meds (standard SSRI's) was next to impossible to handle. Taking one or the other -- no problem -- combining them -- horrible!!

     

    today I am at my absolute wits end - I told my wife today that I'm done with the diet - it does not work for me. I don't understand why, but I just can't get it to work. I was pretty upset, and told my wife that everyone on here that is having success with the diet are children who don't have it as severe as I do - so for them it works, for me it does next to nothing. I'm also on the bontech supplements - again, expensive, but worth it if I actually saw results.

     

    I'm 43 years old, and still do not understand why I was unable to shake this TS as it appears most children do when they become adults. It's so baffling to me, and extremely frustrating. I tried finding a support group in my town, but finding one that has any adult member with TS seems to be near impossible - probably because it's just so rare for adults vs. children....

     

    Anyway, long story, but I'm this close to going back to my regular meds. I'm trying to be strong and not do it, but to be honest, I am just not seeing results from the diet and it makes it hard to stick to a diet that is difficult to begin with (especially when on vacation where it's so hard to even find a place to eat) if it appears to do nothing for you.

     

    If nothing else about the diet, I have weened myself off of caffeine, diet soda, high-fructose corn syrup, alcohol, and foods with artificial colors/flavors - things I shouldn't have been consuming anyway.

     

    I have asked for a list of recommended doctors (hopefully for adults) from my local TS support group, and do intend to talk to one of those doctors.

     

    Rick

     

    Other things to consider:

     

    I feel like when I eat pomegranate, there is a slight reduction in tic severity. I was not expecting this at all when I first ate pomegranate, so I don't think there was any placebo there.

     

    Some studies(?) report that quinine may reduce tics. I don't know the dosages, but you can get it in tonic water. IMO, tonic water is disgusting, but I would drink a bottle of it a day if it helped tics.

     

    You may want to try those two things.

     

    Hi Guy 123--

     

    Just wondering if you ever tried going off of the 1/4 tablet of clonidine?

     

    I'm just remembering my son was on one tablet (0.1 mg), then, by early teens, he was fluent plus tic free, and neurologist suggested weaning down, so we went to 1/2 tablet, and he stayed good....so I was going to go to less, and the neurologist said that he thought son would be fine with none---so, we tried it, ...and he was fine. (he probably weighed around 130 then?)

     

    BEST WISHES

    laurie

  12. Just wondering...which meds are better for vocal tics? My son has minor physical tics. He mostly has intense throat clearings, grunting, and lip popping sounds.

     

    Still going taking the natural route. Just purchased Sheila Roger's book and hope to get more insights.

     

    Thanks everyone.

    Hi Nola--

     

    FWIW, I remember the neurologist telling me that motor tics were much easier to clear with meds than vocal tics were.....

     

    My son was only ever on the lowest dose pill of clonidine, but it did reduce the vocal tics as well as motor tics. The environmental and diet/nutritional supplements we did only seemed to have an effect on motor tics.

     

    The reason I finally went ahead with the clonidine, is that it doesnt have the extra pyramidal side effects that many other psychotropics can have, along with the fact that all of the environmental medicine things we did still didnt touch his vocal tics, and his speech was severely impacted by the vocal tics.

     

    He did "outgrow" the need for meds by early high school, and is mid 20's now and without tics. I hope things work out for your son as well.

  13. Has anyone seen any positive changes in tics after trying allergy controls in their home such as adding an air purifier, organic mattress, removing carpeting, etc.? My daughter's tics are definitely worse during the fall allergy season, so I'm wondering if there is any justification in spending the money to do any of the above in our home. Also, she has been using Rhinocort nasal spray for the last few years for allergies. I have seen several posts concerning an increase in tics with oral corticosteroids - has anyone seen any effect on tics using a nasal steroid spray?

    Hi Houstonmom---

     

    You mention the tics being worse in fall allergy season----

     

    FWIW--

    not sure if you live in a rural area or not, but it took a long time for me to learn corn was a huge trigger for him---and even longer to learn that it wasnt only corn products he ate, but also corn pollen in the air at certain times of the year.

     

     

    BEST WISHES

    laurie

  14. Hi--

     

    I havent been on here for awhile, but came across story in newspaper today, made me think of every parent working so hard to help their kids----

     

    I really know NOTHING of this story, other than what I've read:

     

    http://www.ageofautism.com/2011/03/parental-rights-at-risk-maryanne-godboldo.html

     

    also:

     

    http://www.justice4maryanne.com/

     

     

    This kind of stuff always bothers me-----

    yes, there are 'no account' parents out there who neglect "proper" care for their kids.............but, (sigh) "modern medicine" is not foolproof/does not have all of the answers........and where is the "fine line" between advocating for a child clearly abused/neglected by parents in care----vs. freedom to live your life and raise your child the best way you see fit!

     

    ugh....

     

    anyhow....thought I'd pass this on, FWIW......

  15. We have always been concerned about sugar or candy or perhaps it is the dye's etc in the candy. This has been for about 6 years we have really had to restrict how much she has, for if she eats a packet of skittles etc without much in her tummy, we will really notice a difference behaviour wise - much more spacey, out of it, will get weepy, sometimes a bit more aggressive and often will actually soil her pants. Candy is easier to cut out - but I guess I need to look at cutting out all artificial colours/additives etc.

     

     

    FWIW.....I used to notice significantly increased tic-ing after candy ......turned out my son had allergies to many things in many candies --e.g., chocolate, milk...---but the BIGGEST allergy he had was to CORN---> and Corn SWEETENERS (e.g. "high fructose corn syrup" and similar deritives) etc is used in almost EVERYTHING (except higher priced "natural foods" that deliberately avoid it) because it is less expensive for the company.......

     

    Anyhow...since you've identified candy for sure......my thought would be to consider CORN as well, and do an elimination of all corn products for 5 days at least...you could add dyes to the elimination part if you wanted, but when you add them back to look for symptoms.....only add back one at a time....e.g., give it at least 3 days of returning one of them to the diet before returning the other one, just in case it's only one thing and not the other, you can differentiate....

     

    BEST WISHES :-) !!

  16. FWIW,

     

    One of my sons (not with TS) had allergies to (among other things) milk and EGGS. When he was young, if he had a few bites of eggs or milk, within a few minutes, he'd start getting hives, and his eyes (skin around them) would really swell up. It was clearly an allergy. (dont know about an avocado connection.....we never ate them!)

     

    However, he COULD eat baked goods that had some egg or milk in them, and didnt seem to have a problem with them.

     

    So it probably depends on how severely allergic you are, as to how small amount you can tolerate.

     

     

    The other thought.....the "reaction" might be small enough to not be really noticed , but still be there. For example, with my son and the egg/milk allergy/hives/eyes swelling........as he got older (preschool age)....I noticed he could eat cheese without symptoms, so sometimes he'd have a grilled cheese sandwich, etc. When he got older, say age 8 or 9, he told me that he noticed whenever he had eaten cheese like that, he would notice the palms of his hands and feet start feeling itchy...........no hives or anything, but apparently there still was some sort of "reaction".

     

     

     

    ALSO, re: the "egg beater" question....this is a purchased product (name brand "EggBeaters"...)....to my understanding, they DO contain egg....but just the white of the egg (which is generally got more allergans that the yolk), but has minimal cholesterol, and they do/add something to make it taste like a whole egg instead of just the white. Anyhow, it's a product you can use if you're avoiding eggs because of the cholesterol issue............

     

    ............having spent alot of time trying to bake without eggs....auggh...it's difficult. There are substitutions you can make....but most things arent as good as products with eggs........you can substitute applesauce for eggs in a boxed cake mix and it's not TOO bad.....there's something by "N-R-G" called "egg replacer" that kinda/sorta helps.........you can just add extra baking powder to the recipe (about as useful as the "egg replacer" in my opinion.....which is to say, not real great, ....but better than nothing).......

     

    *******IF ANYONE HAS ANY OTHER GOOD METHODS OF SUBSTITUTING THINGS FOR EGGS IN RECIPES......THIS WOULD BE A GREAT FORUM/THREAD TO SHARE WITH US!!****

  17. he also has a horrible time going to bed
    wa

     

    Do you mean trouble getting to sleep? My son was like that alot, plus tics similar to you're describing. (he's 25 now...this was awhile ago...and, on a hopeful note, he did apparently "outgrow" them during his teen years).

     

    Anyhow, this board has great info re: *natural* things to do to decrease tics, etc.

     

    If you decide to stay with some pharmaceutical meds....ask about clonidine (catapres = trade name). (note: this is different than klonapen). It works on mild tics, and also makes you kind of sleepy, so giving it at bedtime was great because my son FINALLY could get to sleep easily.

     

    i am sooo lost and don't know where to turn next. he is scheduled to have his allergies tested this wednesday being dr has seen links in tics and some food allergies.

     

    This is good. (FWIW....removal of all allergens did almost as much to help my son as the clonadine.......unfortunately it was very difficult to avoid all of the allergens.....so eventually we resorted to the drug...). Read all you can here, and know that not all food allergies show up on blood or skin tests. I'm glad to hear your physician is at least looking into that.....

     

    {{{{{{{{{hugs}}}}}}}}}} and best wishes!

     

    Much good support will be found here :)

  18. re:

    I need to do some research on allergies, I'm trying to find the trigger for his tics, and till now I can not point to anything in special.

     

    There was a great book by Doris Rapp called "Is this your child?" (Or "Is this my child?" ...or something like that).

     

    It was all about food allergies and children. It had alot to do with ADHD, but it (as I recall) explained ALOT re: food allergies, and testing for them.

     

    The one thing I learned is that blood tests and skin test MAY show a food allergy.....but they can also say you're NOT allergic....when really you are....(e.g. they dont always show up on those tests).

     

    As I recall, the Doris Rapp book went into how to do food elimination diets to determine food allergies. From my experience for myself and my kids, ....the elimination diet is what will "really" show you what's causing what, if it's a food allergy.

     

    When you re-introduce a food that's been eliminated...within 24-48 hours you'll get the SAME symptom that food is causing --->only GREATLY maginified.....so that you will be left with NO DOUBTS that there is a connection between THIS food, and THAT symptom.

     

     

     

    My heart goes out to all of you......I've BTDT........it's heartbreaking/frustrating/and everything else!

     

     

    The "waxing/waning" nature of the tics makes it SOOOOO difficult to problem solve what's "causing" them... ---> you think...yea! the tic is GONE.....that was IT!.....but then you realize....sigh...it's just a DIFFERENT tic coming to take it's place......

     

    (the GOOD NEWS is......my son was fortunate, and somewhat "outgrew" it...he's in his 20's now and fine.....no tics.......and many others have similar situations......I'm wishing all the best for you~~!!!!!!)

     

     

    ((((((((((((((((hugs, hugs, hugs)))))))))))) to all of you......there are alot of great folks here with lots of good advice and experience to share with you............

     

    give your little sweethearts an extra hug from me tonight (said by "empty nest" mom here :):) )

  19. I guess I hadnt seen this thread before.

     

    To add my son's story: (he's in his 20's now)

     

    His tics started around age 5-6, heavily noticeable by age 7.

     

    At age 8, I took him to a chiropractor who did APPLIED KINESEOLOGY and determined a variety of food allergies. (corn/wheat/eggs/dairy/chocolate). When we removed all of these food allergans from his diet, his motor tics were reduced at least 90%.

     

    He also stuttered and had vocal tics. Stuttering itself is considered a vocal tic as well. The food allergy avoidance did NOT help the stuttering, and he still had some of the other vocal tics (high pitched sounds at intervals, etc).

     

    However, at age 10....although he had BEEN seeing a speech therapist through the school weekly since age 6......I took him to a DIFFERENT speech therapist, who had additional training in treating DYSFLUENCIES (of which stuttering is). In less than 6 months,....he was fluent.

     

    Now, a good 15-20 years later....he is still fluent, and doesnt have noticeable tics.

     

     

     

     

     

    (note: the food elimination was VERY difficult to manage to eliminate EVERYTHING....so, there were a few years where we eased off on the diet, then put him on clonadine --Catapres---a low dose, and it was effective as well. )

     

    I would also note that we tried allergy NEUTRALIZATION drops for the food allergies....and , for whatever reason, those DIDNT reduce the motor tics, however completely avoiding those foods did. I know many other people would swear up and down that the neutralization drops worked for them.....but ---for what it's worth--that's not what we found.

     

     

    BEST WISHES to all of you !

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