Jump to content
ACN Latitudes Forums

laurena82

Members
  • Posts

    92
  • Joined

  • Last visited

Everything posted by laurena82

  1. Well, it sounds as if he's willing to walk around "sexually frustrated" most of the time.....he could be tic free most of the time as well.... (but, yeah, not a technique most would chose....certainly not for kids, and,...hah....even most adults would want to weigh the pros and cons before signing up for this as long term therapy ...lol!) I have always found it interesting how so many afflictions "abate" during sex, though....I always figured that was do to a "mind body" thing....your mind was very focused NOT on the other afflictions....so you didnt notice them then.....but maybe it does have something to do with neurotransmitters, etc....?
  2. HI Carolyn, My first guesses would be either the egg or cocoa. From my experience, dairy and egg allergies frequently go hand in hand... Generally if you can completely avoid the offending food for a week, then eat that food numerous times in the same day (e.g. day 8)...you will get the "reaction" and big time....within a day or two ....and there will be no doubt you are reacting to whatever the food tried was. You could try avoiding the donuts for a week, then have a few of them spaced throughout one day(important to eat more than once that day)........if that gives you the reaction, ....well, you know to avoid the donuts......then could start trying the individual ingredients. BEST WISHES!!
  3. Hi Chemar, I agree that "traditional" medicine has tons of "down" sides to it.....and I didnt mean to imply alternative therapies wouldnt be good !! I guess I was responding primarily to her concern RE: The "down" side to most of the alternative therapies is primarily the energy expenditure in doing so....and, at age 18, it's going to fall hugely onto the son himself to "do" most of these things, and hence to "buy in" to it all.....WANTING to do all of the food elimination/supplements/etc .....(eg: " just glares at me when I tell him that we need to try not eating some of these things..")..... ....and so as long as he's thinking that the tics are the "only way he can control the intrusive thoughts" he is clearly not going to be "on board" with making changes to eliminate them.....KWIM? ....I didnt mean to imply that the tics actually WERE helping him control his thoughts.....just that HE thinks they are his primary "coping mechanism" for dealing with the thoughts.....so.....eh....why would would he chose to eliminate his only "coping mechanism" right now? (not that it IS his coping mechanism)....(am I making any more sense?) ANyway, hopefully she can convince son that diet changes, etc can help relieve the intrusive thoughts, so he will be motivated to change....... I was fortunate when trying all the diet changes etc with my son...he was a young school age, and, as mother, I was basically "in charge" of all that he ate......but, sigh.....at age 18,....(and with a poor attitude towards diet change, as it sounds from her post...)....sigh......she's got her hands full right there......(((((((hugs!)))))))) I also think you're right in that diagnosis is so important....to be sure that there's not another reason for the thoughts...(although the right diet and nutritional supplements chould really help any condition....) I (well, we all, I'm sure!) can empathize with her.....it is SOOOOO overwhelming to know where to begin.....the trial and error of it all....the lack of support from medical folks (hopefully that is alot better than it used to be ....I think it is, somewhat anyhow)...... ......but then to have to deal with an "adult" son who's not motivated to make changes......... ......very difficult place to be...... {{{{{{{{{{{{{{{[[more hugs!!}}}}}}}}}}}}}}}} BEST WISHES!!......
  4. I guess it depends on what additives/etc you are trying to avoid in the med? My youngest son(no TS involved) (at age 18 last year) had huge problems with hives, and was on massive amounts of antihistimines until we figured it out (e.g. allegra in am, zyrtec in pm, ...and benedryl as "extra" on bad days! geesh! and, he still had some hives on him....) Anyhow , in his case , it was corn...and MOST tablets use a corn product to make those pressed tablets (zyrtec and allegra did as I recall). He could take CHILDRENS LIQUID zyrtec that didnt have any corn in it..... (but all of this info isnt pertainent if your son doesnt have a problem with corn ... ) Biggest downside of benedryl is sleepiness (that's the ingredient they put in "tylenol PM" to make you sleepy!...honest!), plus it only works 6 hours. But, it does work, and is inexpensive. Yes, liquid dye free benedryl should be pretty free of additives, I'd think. I want to say the zyrtec had a dye free version of kids liquid also....but I might be wrong. Zyrtec he would only need to take once a day, and can be given at bedtime so most of the "sleepy" side effect (less sleepy than benedryl) is negated. Dee...I'm sorry I"m not familiar with any of your story....have you done some allergy testing with your son? In general, "traditional" allergy testing/desensitization shots IS effective for seasonal allergies. I know I drug my feet for a long time on that when my kids were young....but eventually did it,...and...in retrospect, if I had it to do over,...that's one thing I probably WOULD do, and do sooner.....because it WAS helpful with the allergies that it treated (doesnt work on food allergies, though). FWIW, my son with the TS did take benedryl at times over the years sometimes, and I never noticed any increased tics from it. (but, again, that was him...who' to say how someone else reacts? .....sigh....ah yes......the frustration of it all.... )
  5. HI eyes on god mom, wow. {{{{{{{{{{{{hugs}}}}}}}}}}to you ! How are things going now? I dont have much time to write here now.....but some thoughts: 1. Do you have a family dr you feel you can easily talk with? If so...that's the starting point for right now. I dont know much about OCD/schizophrenia/etc....but I think you need to get a good diagnosis of what issues you're facing beyond tics. 2. right now your son feels tics are his COPING MECHANISM against the intrusive thoughts...... so, IMO......getting a handle on what to do RE obtrusive thougths is primary right now. (E.G: He's NOT going to buy into eliminating his tics....as long as he sees that as his only "defense" against the intrusive thoughts!...KWIM?) All of the "alternative" treatments are great.....but take "buy in' from the person who has to do them (your son).....and no "silver bullet " quick cure.... If I were in your shoes....I think I"d start out first by finding MD's who : 1. can diagnose the intrusive thought component for you, and put out "traditional" medicine remedy recommendations for you. I'm really thinking it's in your best interest to just bite the bullet and start with medicines for that because it is so distressing for son and your best chance for some quick relief (hopefully). SIMULTANEOUSLY........as you seek "traditional" MD advice/treatment......you need to be finding a MD that you feel COMFORTABLE talking wiht, and who will be ACCEPTING and UNDERSTANDING of your desire for natural treatments 2. Research and begin alternative treatments...... however, ....you have to keep in mind, ....he **is*** an adult...and, honestly, he's the one who has to "do" the stuff......so, you are his "resouce" person helping him......but you really cant "force" alot ...... ....sigh....(I have boys ages 19, 21, 24...so am familiar....) Lots of "nutritional" stuff takes time to work...."allergy" treatment can be VERY useful....but again, takes time and energy and COMMITTMENT by the patient....sigh.......... IMO...the whole situation is all HUGELY distressful to you/son right now.... my thought: find a traditional MD you can TALK well with, and explore traditional treatments first, and then start slowly with alternative ones along with them.....you can always reduce/end the "traditional" ones as alternative ones start helping..... more later.... PS: Back in early 1970's...there was something called "orthomolecular" psychiatry......had to do with nutrition as basis for treatment of mental illness..... not sure what that's morphed into these days.....but would be worth looking into as time allows you....... {{{{{{{{{{more hugs!!}}}}}}}}}}}}}
  6. tried to remove this post, because I "replied" instead of "edited" original !!
  7. Dee, that sounds so familiar! FWIW....I found that the REMOVAL of allergans, etc was more successful in decreaseing tics than the ADDITION of nutritional supplements . (let me also say we ate a pretty 'natural" diet before trying, though...e.g. whole grains, minimal sweets/processed/refined....so that might make a difference). (also: disclaimer: that was only MY experience..others DO report success with other things) ALSO:, nutritional supplements can take months to show results...as your body is using the supplements to build new cell walls/nerve sheaths, etc etc. So, ...while good to do...probably not as dramatic an improvement usually?---however, magnesium is used in nerve transmisison process, etc, so WOULD show results more immediately and it's important to have enough and most modern diets dont...have a higher calcium to mg ratio than it should. whereas removal of offending substances can show up sooner...as they clear his system (and when re introduced...symptoms return pronto!....sigh....) Have you heard of either APPLIED KINESIOLOGY (spell?)---muscle testing of energy meridians in your body? And/ or "Electro Dermal Screening"? (also tests energy meridians in your body?) Either of those can help identify things that increase or decrease energy flow in body......THEN, you eliminate what it's shown as detrimental to energy flow, and add (supplements) what it shows is posiitive. WHAT I DID: Went to a chiropractor who was skilled in this (NOT ALL ARE!! !! !!) He had me keep a log of everything my son ate for a week.... THEN.... anything he ate more than two or three times....bring a sample with me.....and he tested him for it (put on son's tongue...and tested his muscle strength) YOU CAN ACTUALLY DO THIS YOURSELF, too ! Google around....there's probably instructions of it on the internet these days! THEN, we eliminated what that test showed as not being good......the more we identified and eliminated, ...he did get better.......and then, hah....the litmus test....re introduce them....(not the FIRST time you eat it....but the SECOND time that day.....BINGO!....it will trigger whatever symptom it is causing....and trigger it big time) There are alot of books on food allergies that will tell you about this..... SIGH>>>> SKIN and BLOOD tests for food allergies generally DONT show these things..... case in point, my youngest son (no TS involved)....at age 18 developed hives all the time..........blood and skin test said corn was "fine".......hah...did the allergy elimintation diet.....hives gone....added back in corn....bingo! itching, swelling hives....... sigh..... But, back to your initial post....yes, magnesium would be a good one to start with.
  8. I I love dogs, See my reply to AHB re: eye rolling. As I mentioned, ALLERGIES that caused eye irritation were the ONLY time my son had problems with eye-related tics....and, of interest, the end of summer (read: now !) is a common time for environmental allergies that cause people eye related allergy symptoms....and another mom on here mentioned eye tics just the last few weeks... Therefore, I'd think that ANYTHING you can do to decrease allergies that affect your child's eyes would help REDUCE the eye blinking/tics etc in the future. My son went through all of this ? 15 years ago....and I was hesitant to go through "traditional" allergy testing/desensitization shots .....but eventually did....and I think it was a very good thing to do. IN RETROSPECT....I would do that sooner, rather than later, if I were to live through it all again. (((((((((hugs)))))))))) and best wishes! It is so painful to see your child go throught these things.....
  9. Catapres (clonidine). This was ? 15 years ago. I see on here someone mentioned "topamax"...that wasnt available back then. There was catapres, haldol, and maybe something like orapp? Haldol (and others) can have "tardive dyskinesias" as a "side effect". These are funny tongue thrusting/lip smacking movements (involuntary) that these psychotropic drugs CAN cause ...and....the scarey part.....they can CONTINUE even if you discontinue the drug! So, I would be VERY cautious if considering a drug that has that as a potential side effect. Those drugs MIGHT be your only option....but I'd use them as a LAST RESORT.... From what I saw when I googled "topramax" there was no "tardive dyskineseia" mentioned....but you'd want to research all about it better. For the catapres....the main side effect he had was sleepiness.....so we upped the dose as much as we couldwithout putting him to sleep....and, like I said, it still didnt really help the vocal tics. So, eventually , decided to stick with it...the, I DECREASED the dose to the minimal amount that still suppressed the motor tics (one pill at bedtime usually). I remember CAtapres has kind of a cumulative effect...so , the first day you've increased the dose....not too sleepy....but by day three....wow...VERY noticeable. The other useful thing with catapres was that it DID work fairly quickly...e.g, in a couple of days, you'd see results. It's also a pill used by many to control blood pressure (apparently in higher doses)......so I felt pretty comfortable in that it had been around for awhile and used by alot of folks. Plus , it was a drug sometimes used for ADD....and my son did have some of the "distractibiltiy" components of ADD....although I dont know that the catapres did anything to help that at all, really. BEST WISHES!!
  10. Hi AHB, (hugs) to you!...what a frustrating thing to have to live with! I had two thoughts in reading your post: 1. My son had TS tics all while growing up...as you know, they kind of wax and wane...one "type" of tic disappears, as another one starts to take it's place. Regarding EYE ROLLING, etc...there was only ONCE that I recall he had eye rolling tics: And it occured the end of June one year when pollens were REALLY bad that year.....he did have allergies, and he was wheezing etc with the high pollen count, and THAT year, it was so bad that his EYES were red/itchy....the whites of his eyes looked like road maps with so many red lines on them, etc....... ....and THAT was the year he was doing all of the eye rolling tics.... no other time, ever. SOOOOOO...that makes me think that it was the IRRITATION to his eyes that triggered "that" to be his tic that time..... hence, IMO, ANYTHING you can do to DECREASE strain on your eyes would (hopefully!) be a benefit for at least NEXT time your body NOT chosing "eye rolling" to be the "tic du jour" ...KWIM? If I were you, I'd go out and buy light bulbs that are mean to reduce glare, go to eye dr and be sure wearing the best eye glasses for reading you can (if you need them), try to break periods of reading up, etc....whatever you can do to reduce eye strain/stress. (like other posters have discussed) 2. ...and this sounds kinda sad/depressing......but, IMO,....the most important thing for you right now is being able to keep up with your classes, etc.... With ADA (american with disabilities act), etc...generally schools have to allow provisions for folks with physical disabilities........ honestly, if you're having to do the eye rolling thing everytime you read.....that is a serious disablity right now.....simply because it's going to take you more time to get through the reading than if you didnt have to deal with that.....and, clearly, you are doing all you can to NOT have to deal with this...you dont have any control over it happening! I think you should be able to get a note from your MD/neurologist and qualify for some sort of modificaton in classes to help you deal with the situation. STRESS is a huge exacerbator of tics as well....so, feeling the STRESS of needing to get all of this reading done is , most likely, making the tics worse as well....! Try asking at the school what is necessary for provisons for physical disablitites........ I'm guessing someone else here has had some experience with disruption from tics while at colleges? Maybe post a new thread with that in the title? BEST WISHES!!
  11. (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 ...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?)
  12. Oh...hugs to you! Sounds SOOOO familiar to what I went through with my son....yes...it works...but, sigh..SOOOOO difficult to maintain in the real world. If you havent tested corn/fructose/etc, I'd suggest trying that also....as my son had the eggs, dairy, wheat.....but turned out corn/corn sweeteners were the HUGE triggers.... And corn is in almost EVERYTHING....sometimes it just says "food starch" ....but that is corn based....sigh.... if others are having issues with corn allergies...I do have some links to info on all these "other" names for corn products.... maybe there is a place on this website to post this kind of info? BEST WISHES! PS: Just saw this: Believe me, reading all these posts brings back such feelings..... you know, your kids grow up and move out (mine have now)...yet you still worry about them forever..... I'd sure like to help anyone here any way I can. It IS a long road....((((((more hugs!!)))))))))))
  13. Hi Krista, Here's my 2 cents (free advice...worth what you're paying for it ) "traditional" MD's only really have experience with "traditional" pharmaceuticals. This means....the MD will recommend prescription drugs. I'm assuming youre interested in "natural" treatments instead , if possible...why you are on this website.. therefore , the MD you will be seeing, in my guess, will either be: A. saying "go ahead, try that "natural" stuff (wont hurt)....but here's what will really work": and give you a prescription OR: B. try to make you feel like the most negligent mother on earth if you dont start prescription drugs, and tell you all the natural stuff is "quack"... If you wind up with Dr. B....politely listen....then leave, and search for a Dr. A. Sometimes it takes time. From my experience (I'd like to be wrong on this one ! )....you will need to do most of the leg work yourself RE: "natural" treatments. IN looking at "natural" stuff, consider 2 things: 1. Is it SAFE? ("first, do no harm") (I'm guessing most of the supplements recommended on this site are?) 2. Can I AFFORD it....(we honestly spent HUNDREDS of dollars a month on nutritional supplements...and , quite honestly, I didnt see much positive results from them. HOWEVER, in our case, we DID see results from food/allergan avoidance.....and, to be fair, others DO see results with supplements....but...it is NOT a guarantee....so, you do need to be realisitic, and look practically at your whole situation in deciding how to approach things) IF you can afford the supplements....I'd say, "try it"....if it helps...great! IF not, then , you've already explored one path that you know isnt exceptionally useful in your case. In my case....sigh...I spent about a year "figuring out' what to do....finally did find some success with food avoidance...spent another year or so DOING that....and....sigh...SOOOOOO difficult with a school age child.....one little "treat" from someone...and he's ticing all over the place........finally resorted to meds because they DID work (on motor tics), and it was SOOOOO difficult to manage the other...... ((((((Hugs)))))) and best wishes!
  14. FWIW,... IN retrospect, yes, my son's tics were worse at begining of school years usually.....(and definitely always worse at end of school day as opposed to prior to start of school day)... My son's motor tics were definitely influenced by allergies (primarily food allergies)....but environmental allergies can/did play a role as well. This time of year is especially bad for folks with pollen/ragweed/whatever allergies....quite possibly has something to do with worsening right now. Also, stress does play a role as well, I'm sure you've noticed. So , between fall pollen etc allergies and "stress" of new school year....there's a bit of an explanation right there. sigh....BEST WISHES.... (we need a "hug" icon ! ) PS: This wasnt on the market (that I"m aware of) when my son was that age....I just googled it....looks relatively begign, as far as pharmaceuticals goes.... what always concerned me were the ones that had TARDIVE DYSKINESIAS as "side effects"......because those can be "permanent"....e.g, even after going OFF of the meds....the tongue/mouth movements continue......it doesnt look like Topomax has that as a side effect... Ditto here,...although it was MY side...my dad and brother have always had some throat clearing type of stuff...always attributed to "allergies'...... but, as you say...nothing "extreme"....but once you become aware of tics....you notice it actually IS that , not simply throat clearing/etc stuff.... interesting....
  15. Oh....more {{{{{{{hugs}}}}}}}}}} ...sigh.... I dealt with all of this ...eh....? 20 years ago..... ...sigh.... my son is 24 1/2 years old now....and NOT bothered by tourettes anymore...YEA! So....yes....it DOES (can ) get better.... bactk then, ...latitudes was barely a newsletter yet....I think it started out as an "alternative" treatment arm of tourette foundation....then they kinda/sorta didnt want much to do with it...and it became lattitudes newsletter......eventually a website..... after I was no longer involved. but...anyhow...my son had TS at pre school ages....I "realized" it/had it diagnosed at about age 7....spent from age 7 to 9 researching "alternative" treatments..... ages 9 to 11 doing them (supplements and food allergy avoidance) age 11 to 14 doing clonidine (catapres...it worked on motor but not vocal tics) age 11 to ? 13 with speech therapy for vocal tics/stuttering age 14? quit catpres ....and he was OK... TODAY....... age 24....no tics/no stuttering......a great kid/young man YES there is hope....... I'd like to help anyone I can here... It is SOOOOOO painful as a mom to see it all happening to your child....... ((((((((((((((((((((((((((((((HUGS!!)))))))))))))))))))))))))))))))))) to all!! !! !!
  16. Faith, {{{{{{{{hugs to YOU!}}}}}}}}}}}}} ah, yes...sigh.... My son, now in his 20's and doing well (I wrote briefly one other post to lele here) had tics triggered by foods...esp corn/etc. One year, when we were eliminating all and treating only that way (no meds....eventually I relented and used catapres....which worked...because foods were SOOO hard to control in second grader lifestyle...sigh...) anyhow....we went to xmas parade....he got one SMALL candy cane (corn sweetener) from santa.... sigh.... by the time we got home, ....he was tic-ing and bouncing etc all over the place..... oh...and, ...memories....the "hey" sound......ah, yes.....BTDT.... Honestly..... THis was all ? close to 20years ago...... FORTUNATELY, he did "outgrow" most of this in teenage years.......! There was no internet then......but there was a newly formed "LATITUDES" newsletter.....and it helped me SOOOOOOOO Much!!!! I'm SOOOOO glad to see this still exists in some way..... SOOO wonderful you have this level of support today... IT is SOOOOOO difficult and frustrating...... and to try to figure out..... ......sigh....the "waxing/waning" nature of the tics.....one goes away (you think it's something you did)...but...no, it's just that one waning, and another is now waxing....sigh...) {{{{MORE HUGS}}}}}}}}}} and best wishes to all you fellow moms!
  17. {{{{{{{{{{{{{hugs}}}}}}}}}}}}}} to you lele! (or is lele your son's name?) Anyhow...... I was in the same position as you (very similar) ........my son is now 24 yo and doing fine "latitudes" was a newsletter then.....and it helped me alot! I dont have alot of time to write today, but want to send you hugs and support! This was my experience as well: e.g...what I found most useful was not so much what we ADDED (e.g. nutritional supplements, etc) but what we ELIMINATED: food allergans...ESP corn . (corn is in EVERYTHING as "corn fructose" , "high fructose"....and tons of other names.) I took him to a chiropractor who did APPLIED KINESEOLOGY muscle testing for food allergies. That identifed foods that were a problem....then we elimated those. YES....it is DIFFICULT. I had to drive into the next county (back then) to find "health foods" that didnt have things like corn sweeteners/wheat etc. HOWEVER.....when we DID close to 100 % eliminate these allergans.....his MOTOR tics were virtually eliminated as well! His VOCAL tics, however, manifested as stuttering...and was not as easily treated. Avoiding all the foods was SOOOO difficult, we eventually (age 9) resorted to catapres (clonidine)....it DID eliminate the motor tics similar to the food elimination. (I'm not sure why your MD doesnt want to treat it?....have you consulted a neurologist?) Catapres has minimal side effects...mostly sleepiness....so we gave at bedtime. Regarding the stuttering/vocal tics.....a few years later (age ? 11) I learned that not all speech therapists have "dysfluency" training......and took him to one that did.....and in less than a year...he was no longer stuttering. The neurologist told us that he might "outgrow" the tourettes in adolescence......and....he did! We stopped the catapres at about age 14....and he's been fine since! He is a wonderful boy/young man......and yours is as well! When I signed in today, I said other members could contact me through email....so I'm assuming there is a way you can contact me through that if you want... {{{{{{{{{{{{more hugs}}}}}}}}}}}} and best wishes! THINGS WILL WORK OUT (ps: FWIW: most ham has corn products in it)
×
×
  • Create New...