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kamkoop01

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  1. no it was my grandfather that was on the haldol. he had parkinson's,cancer and alzhemiers (sorry spelling) this made his tongue numb and hung out to one side. i told the dr this and she said not to try it on him if a family member had a reaction. i am very interested in the ts-plus just what all do you give with this. is it just the ts-plus ?
  2. i have seen the bonnies thing but not really much on the empower. i read on a thread on here that the empower can make tics worse. i just am scared to try anything new. my main thing is just tell us he has touretts. we have been to special dr's in highly respected childrens hospitals and they say he isn't adhd or have touretts he just has a tic disorder. well after yesterday it was like watching a kid with tourettes. he was in his room blurting out things like BLAH, BLAH, DA ,DA, and i would ask him what he was doing and he said watching tv . then it sounded like he was saying FA FA FA and i was soooo scared it was going to be a bad word come out . then once he went outside to play it all went away and didn't do it again for the rest of the night. just the head popping off and on and the eye rolling he does from time to time. it comes and goes and this is why they told us he doesn't have touretts because he can totally stop when he is focused on something else. i don't know if it is a nervous tic or something he is eating or what. allergies showed he was not allergic to anything but that doesn't mean it can't be i guess food dyes right? i will look into these supplements and go from there. thank you both for your help. What kind of allergy test did you do? The traditional test (grid in back) showed NOTHING at all for our son, but the Elisa/ACT showed he is hypersensitive to 11 different items. You might want to try that. He also does much better on NATURAL CALM vs. just magnesium citrate. Hope this helps. the allergy test done was done with little plastic ball up and down the arms. it basically test for allergies that could be from pollen,molds,grasses just the basic type but they did test for dairy being when he was little he had milk allergy or that is what we were told being he could not tolorate any fomula other then nuetramagin. he still gets stomach cramps from drinking milk so i think he may be lacto but not actually allergic. i have read alot of things on the natural calm and was wanting to try it. i was scared to purchase it. i am to the point where i may just give in.
  3. yes tried the epsom salt baths but he knew i was putting something in there and would not stay in long. he is a shower taker and hates baths.
  4. i have seen the bonnies thing but not really much on the empower. i read on a thread on here that the empower can make tics worse. i just am scared to try anything new. my main thing is just tell us he has touretts. we have been to special dr's in highly respected childrens hospitals and they say he isn't adhd or have touretts he just has a tic disorder. well after yesterday it was like watching a kid with tourettes. he was in his room blurting out things like BLAH, BLAH, DA ,DA, and i would ask him what he was doing and he said watching tv . then it sounded like he was saying FA FA FA and i was soooo scared it was going to be a bad word come out . then once he went outside to play it all went away and didn't do it again for the rest of the night. just the head popping off and on and the eye rolling he does from time to time. it comes and goes and this is why they told us he doesn't have touretts because he can totally stop when he is focused on something else. i don't know if it is a nervous tic or something he is eating or what. allergies showed he was not allergic to anything but that doesn't mean it can't be i guess food dyes right? i will look into these supplements and go from there. thank you both for your help.
  5. see the thing is i am nervous about giving him anything. i have seen the ts-plus but haven't really checked into it. i will do some research on it. i just want him off the clonidine so last night i gave him 1/2 the dose and he slept all night without waking with a nightmare. so basically he was on .1 and i 1/2 that. i sent his teacher a note today to see how he is doing in class or if this is only going on at home. surely she would have called me on this if he was doing this in class. geeeez being a parent sometimes can be soooo hard but staying strong and knowing there are others out there going threw what you are seems to help me alot.
  6. hello, i haven't posted in a while but since last post had my 9yr allergies tested and he is not allergic to anything. he has a tic disorder that has been really bad since middle of july. we ended up taking him to a dr in our town and she prescribed him clonidine. so we started with 1mg for 1 wk and also paxil. the paxil was for the possible anxiety issues she felt he was having that may be casuing the tics. well we noticed with the clonidine he did go to sleep earlier but at midnight would wake and then go back to sleep to only waken again with horrible dreams. we then added the paxil as dr suggested and he started staying up and walking around at night in his sleep. his dr said this is called activation and we got him off that. we then kept him on clonidine 1mg for a while longer but sleep issues did not imporve. dr then upped clonidine to 2mg and then he went from sleeping off and on throught the night to waking and not going back to sleep at all. right now we are weaning off clonidine but tics are horrible . they never went away or improved since we started clonidine on august 5 and today is now sept 13 and he is now blurting stuff out and i swear resembles tourettes but was not diagnosed with tourettes. he also has had several issues with strep in the past that i have mentioned in other post and we had an immunology work up done and found out he has no immune system . he and his 5yr brother both have IGA. they are both on amoxi/clav antibiotic at the moment for sinus infections and he now has an ulcer in his mouth and is ticing like crazy. i don't know where to turn next. his dr wanted to put him on respidol and it scares me really bad reading about the side effects plus my papa was on halidol the original respidol and lost all feeling in his tongue and arms and dr said we should not give him this med. he doens't have any other issues other then anxiety and tic disorder. i am worried,scared and don't know what to do next. i have a friend that found a dr in our town that is a Naturopathic Doctor and wanted to know if anyone has ever had any good results with a dr that treats with supplements instead of scary meds. please if you have any info share with me. i have also read things about mercury and causing tics and just don't know what all to do next. thanks
  7. this is correct. non PANDAS brother has severe allergies. our pedi said that if anyone in the house had strep then the child with PANDAS could have a reaction. well this after noon my husband come in the door saying his throat is hurting along with mine hurting as well. we did have his allergies tested and he didn't show to be allergic to anything at all. i told them that if he eats alot of ketchup his ears have turned red before. he didn't show any reaction. also we had a pool put in last summer and he didn't do this bad then. we have been in the pool since may and just last month tics have gotten bad. he still hasn't ever been diagnosed with PANDAS so i guess i shouldn't say he has it but he tends to follow that pattern more then TS. he has never been diagnosed with TS either. just a mild tic disorder when he was 6 and we were told more then likely he would outgrow this. well now he is 9 and it has gotten worse.
  8. hi again, ok i took my son that is ticcing like crazy to have his allergies test yesterday along with his brother. my oldest that is ticcing now for 4wks following his brothers strep throat issue is as of july 25 stated another tic (head popping and shaking )woke up that sunday morning doing this. he this morning 8/5/10 woke up with yet another tic. he will be sitting here and just blurt out DA BAB DA BLAH BLAH. just like that. i just went to another room and started crying. I yesterday after having allergies test we found out he is allergic to NOTHING AT ALL. they testes food and environmental. his brother on the other hand is allergic to EVERYTHING UNDER THE SUN. he will start allergie shots on august 17th. my question is if i have one that is staying sick due to allergies and this is causing the 5yr to have itchy scratchy throat will this trigger my oldest son that is ticcing to have more tics. i myself woke up yesterday with my throat hurting a little but i know it is just drainage. can a child with PANDAS react to this or is it only strep infections they can tic worse if someone in the house has it. i got him into a Psychiatrist (Child & Adolescent Psychiatry) tomorrow at 11 to try and get a diagnosis. his pediatrician did a throat culture and it was negative. no one has done blood work. we are also waiting on immunology test to be done. this is just something that has been going on since he was 5 and has battled strep over and over (6 times in 1yr) tonsils and adnoids are out. not he just goes through periods out of the blue will wake up and have a tic. just was curious if this was something that may be causing tics to be bad right now. thanks
  9. i just went and purchased two air purifiers to see if that helps. like i said we are getting allergy tested tomorrow and i will bring this up to the dr. i hope these purifiers help a little. it is wierd because today i took both my boys to there pedi because the oldest woke up this am and was saying his throat hurt. so i was like wow ticcing like crazy and now throat hurts so i called the dr. and took both boys. well got there and noticed he did not tic one time. he said it was because he was trying to be good so he could have me buy him a game after we left dr office but we were there for over an hr and he didn't tic one time. her office is all tile. he stayed the night at my mom and dads saturday night and they have older carpet and was ticcing really bad my mom gave him some tylenol and she said he kind of calmed down. we get back home and he is ticcing again. could it start and stop that fast? is this a sign of sensitive allergies or tourettes? the dr swabbed his throat but it was negative for strep so she doesn't feel like now it is pandas. i don't know. lol i am just wanting to pull my hair out. he is very aggitated and is poor pitiful me when he is ticcing like he is right now. i tend to stay on him because the whinning and poor me drives me up the wall. just hoping these allergy test can give me a direction in what we need to change or be doing .
  10. hello, just was wondering if anyone had this happen before to them or to their child. i have recently posted that we don't know if he as pandas or just a tic disorder (was diagnosed by tx childrens hospital with mild tic disorder 2yrs ago) being it comes and goes and it isn't the same tics when it does come back. anyways we recently on july 22-23 had new carpet put in 4 rooms in our house. his room is upstairs and we had all upstairs completely recarpeted 3 rooms and hallway and then masterbed room downstairs. well he woke up on the july 24 and now looking back he seemed real moody,and irratable then on july 25 that sunday my husband woke him up to play golf and he was doing a new tic he had never done. he is head ticcing. popping it like he is saying yes then shaking it side to side. i was curious if this could be carpet releated. my husband also said that when they were playing golf our son could not sit still that day and that when he was making a turn he fell out of the golf cart. he was fine and my husband was not going fast at all. he said it scared him a lil but when they got home i instantly noticed the tic and my husband said he asked him several times why he was doing his head like that and my son didn't really realize he was doing anything. we are doing allergy testing tomorrow so i will be sure to ask and let dr know about new carpet but was wondering if this could affect tics. thanks
  11. if i could find a specialist for PANDAS here where i live i would get him there fast. our pedi did feel he may have it but did a culture and that was it and it was negative so she just didn't go any further. my son goes this up coming tuesday for allergy testing that was referred by our pedi so i am curious to see what the out come will be he is also having the immunology test done but i did look on the work up order yesterday and it is not testing titers like i have seen posted on here before. my next step after doing allergy testing and if no answers there back to pedi to be referred again to a neuologist. the first childrens hospital we went to when he was 6 is supposed to be the best but we didn't get really any answers we didn't already know. my friend took her son last week to that same hospital and when she brought up PANDAS she said the dr just didn't really go with it. they just don't have any information i guess on it being it is rather new to them. she also brought up allergies like i did and they said same to her but her son's has to do with milk products and the dr didn't really buy into it either. well my opinion is if you are making changes at home and see a difference in your child then that is a start to something. i did forget to mention that we had new carpet put in upstairs where his room is on july 22-23 and he woke up on the 25th with this new out of the blue head popping/shaking tic. i really really hope the allergist can find something.
  12. Hello! Welcome to the forum. I am sorry that you had to find us, but I hope you have been finding good information here. We all learn from each other every day. It sounds like you've been battling recurring strep infections with tics that increae with infections. I am wondering what the blood test is that the doctor ordered - do you have the name of the test? Also, have you ever kept track of your son's tics (like kept a journal with how bad the tics were each day)? Many families find that keeping a journal helps them to see if the tics are strongly correlated with infections. Is your son having a lot of tics right now? hi, the tics started when he was 5 after putting him on adderall for possible adhd but at that time and during that year he had strep 6 times in 1 yr. we took him off the meds slowly and dr recommended having tonsils and adnoids removed he was 6 1/2 at that time . he is now 9 and tics have just gotten worse but do seem to ease up after a few months. he is went from a happy/hyper/outgoing lil boy to a ticcing/constant worrying/ no confidence lil boy this past year. since tonsils have been removed he doesn't seemt o get strep as much but his brother that is 5 just recently 4wks ago had it and that is when i noticed the tics getting worse again. he had been fine all summer but still may have made a lil humming tic when trying to go to sleep at night. now in the last 4 wks he is rolling his eyes, popping his knuckles, humming and mumbling tics. this past sunday he woke up and was popping his head and as of yesterday he is not shaking and popping his head. i am very worried. we went to a childrens hospital in houston tx and they diagnosed him with a mild tic disorder 2yrs ago and put him on klonipin to help with tics. well that lasted 2 months because the tics go even worse on the klonipin going into the 3 month. slowly got him off that and he has been on nothing since. i haven't ever kept a journal but now seeing this fast onset of all these new tics i am writing it down. we recently 1 wks ago had a throat culture done after talking to his pediatricion about PANDAS but it came back negative. it just seems soooo strange to me that when he or his brother get sick his tics get worse then get better about a month later. i am not sure of what all blood work he is having done but it did say on the paper that he was being tested for 9 diff things. i went ahead and am having my 5yr tested as well to make sure that neither are carriers of strep and maybe tht could be what is causing this. i have been reading on tourettes,tic disorders and pandas and he fits everyone one of those descriptions. being he is shaking his head i can't keep count of how many times he is doing this because it is from about an hour after he wakes up until he goes to bed . there is really not stopping. it is either a pop of the head over and over or shaking. i have cried and cried without him seeing and last night finally got my husband to agree that if we don't get any feed back from this immunology/ allergy test we are going to a tic speacialist. i hate seeing him hurt. i am just sooo confused and wish there was someone local in tx i could call as far as a tic disorder specialist that i could get him into before school starts back up on august 23 thank you for your reply.
  13. hello again, today i took my son who is 9 who was diagnosed 2 yrs ago with mild tic disorder to an allergiest/immunologist. my question is the blood work for immunology test what all does it test for. i explained to the dr that my son had strep 6 times in one yr and had tonsils/adnoids removed 2 summers ago and still from time to time gets strep but his tics seem to be way worse when he has it. she said this test will show if he is a carrier of strep but didn't really go into any details. i was curios if anyone knew what all it would show. does it test strep titers or is that a whole different test itself. thanks
  14. my son was put on klonipin at the end of his 1st grade yr and it was fine for about 2 months then the tics got way worse. he still has trouble going to sleep and what i have noticed is that he is trying his best to not do the eye rolling but can't be still to go to bed. he squirms and makes the humming noises at bed time. i tried melatonin which tx childrens hospital told us to try and it worked for a while as well but recently this past yr (2nd grade) started giving him nite mares.
  15. thank you so much mkur i did have a friend tell me about the ibuprofen but haven't tried it yet. i will do that tonight being he is popping his head like crazy. he is scheduled to see an allergies/immunologist on wednesday and i hope we can get some kind of answers. alot that i talk to dont see a relation with food allergies and tics but i have noticed that if i give him ice cream his verbal tics (humming sounds) come on very quick and don't just go away. as far as food dye's i have noticed he gets very hyper and he doesn't even realize he is ticcing. he does i know for sure have some kind of reaction to red sauce ( ketchup being #1) his ear lobes turn bright red. i know he has food allergies it is just going to be a pain getting him straightened out once we find out but i will do what i can to get him as close to tic free as i can. i will have to try the epsom salt as well. thanks again for your help.
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