dee45 Posted June 28, 2009 Report Share Posted June 28, 2009 Hello, I have to agree with Chemar good time to do a strept culture if negative you could rule out that trigger, I know you have mentioned a minute clinic you have gone to before might be a good idea. Deanna Link to comment Share on other sites More sharing options...
san70 Posted June 29, 2009 Report Share Posted June 29, 2009 Myrose, I am so sorry for all that you are going through. My heart goes out to your and your little girl. You are right, this thing is a monster and it is just not fair. Without this board and everyone here, I am not sure how I would have or continue to be able to handle what this monster throws my way for my son. I hope you find relief soon. I am so glad her best friend came over and your daughter was happy. That's really what it's all about...their happiness. You mentioned to confessing and reporting. Then, Chemar mentioned doing a strep culture? What is the relationship between these things? San Link to comment Share on other sites More sharing options...
Chemar Posted June 29, 2009 Report Share Posted June 29, 2009 San some kids have tics because of chronic strep infection, a condition known as PANDAS Severe OCD is characteristic and one of the symptoms many parents note is confessing/reporting things repetitively here is our PANDAS forum where there are other posts about this http://www.latitudes.org/forums/index.php?showforum=17 however confessing/reporting is also something that can occur after a trauma or other trigger so it isnt unique to PANDAS my son had it real intensely after he was hospitalized for a severely injurious tic and they had pumped him full of haldol and luvox. Link to comment Share on other sites More sharing options...
faith Posted June 29, 2009 Report Share Posted June 29, 2009 myrose, Had you ever tried antibiotics in the past with your daughter, I can't remember now. If so, how did that go? Also, one thing was on my mind when I see how you are feeling about all this. Just try to remember, that you have not seen any tics in a long while, so any new tic that might come on is probably going to seem bigger than it might be to some of us, simply because of the comparison of having no tics as opposed to what you are seeing now. I know you were hoping that things would be under control once you went off the topomax, so anything more than what you were "used to" is going to set off some panic. again, I kind of thought you were not adhering strictly to dietary while she was on the topomax, I do recall in the beginning you were happy to let her relax on that for a while. How long had you been avoiding triggers, especially the important ones, like artificals, colors and the like before coming off the med? see, you may have to start all over with what things set her off. I do believe that certain things are definite triggers, altho not a one size fits all, so I don't know if you were already versed on what set your daughter off in the past. I know for my son, salicylates in fruits are something that I've pretty much figured out does have an effect on his tics, and right now I am noticing that it seems tomato and tomato products are seeming to set his vocal off more, because he is at a low level now, so waxes are easier to spot. Like I say, you may just have to kind of start from scratch. While she was on the med, I don't think I recall any real setbacks, correct? Link to comment Share on other sites More sharing options...
melanie Posted June 29, 2009 Report Share Posted June 29, 2009 myrose,Had you ever tried antibiotics in the past with your daughter, I can't remember now. If so, how did that go? Also, one thing was on my mind when I see how you are feeling about all this. Just try to remember, that you have not seen any tics in a long while, so any new tic that might come on is probably going to seem bigger than it might be to some of us, simply because of the comparison of having no tics as opposed to what you are seeing now. I know you were hoping that things would be under control once you went off the topomax, so anything more than what you were "used to" is going to set off some panic. again, I kind of thought you were not adhering strictly to dietary while she was on the topomax, I do recall in the beginning you were happy to let her relax on that for a while. How long had you been avoiding triggers, especially the important ones, like artificals, colors and the like before coming off the med? see, you may have to start all over with what things set her off. I do believe that certain things are definite triggers, altho not a one size fits all, so I don't know if you were already versed on what set your daughter off in the past. I know for my son, salicylates in fruits are something that I've pretty much figured out does have an effect on his tics, and right now I am noticing that it seems tomato and tomato products are seeming to set his vocal off more, because he is at a low level now, so waxes are easier to spot. Like I say, you may just have to kind of start from scratch. While she was on the med, I don't think I recall any real setbacks, correct? Myrose Ive been following your story and Im sorry this is happining to your daughter I know how hard the medication choice is to make.I hope you figure this out so she can enjoy the summer without the tics.We have chosen the medication route for now things were just toooo bad here for him and for us .He went to a large party yesterday without any incedent hung out with the other kids his sister even enjoyed his company.For us and him its a huge I mean huge deal.I hate that he has to take medication to control his body Its so not fair but the fact is he does for now.He has food sensitivities hes had every test ,the best mds the best DAN drs all of the therapys money can buy .Not that all of that didnt help but he has been held hostage for the past 1 1/2 years to ntourettes pandas and all of the mood anger crap that comes along with the "monster".I pray now that we can manage this and hopefully come out of it someday and I dont know when that will be.But for now this is the path we will take and I dont know what tomorrow will bring >I do know that He said thank you for the wonderful time he had yesterday and he is smileing all (well not all) hes 15 the time .And so are me and my husband . Best of luck and Ill pray that everything works out for your family. Melanie Link to comment Share on other sites More sharing options...
faith Posted June 29, 2009 Report Share Posted June 29, 2009 melanie, what med are you referring to that seems to be helping right now? have things gotten better than it was a few weeks ago? Faith Link to comment Share on other sites More sharing options...
melanie Posted June 29, 2009 Report Share Posted June 29, 2009 melanie,what med are you referring to that seems to be helping right now? have things gotten better than it was a few weeks ago? Faith Hi first we tried the topamax up to 50 mg hes 140lbs then it got so bad we tried the rispedal and we had such great results initally but not for long but now its working again so were on 25mg topamax and risperadal .5mg 2x per day and things are going well very well I dont know how long this will last but its the best hes been in 2 years Melanie Link to comment Share on other sites More sharing options...
colleenrn Posted June 29, 2009 Report Share Posted June 29, 2009 MyRose, I am so sorry about your daughter. My suggestion would be to do a 72 hour throat culture asap to rule that out. Colleen Link to comment Share on other sites More sharing options...
dee45 Posted June 30, 2009 Report Share Posted June 30, 2009 HEllo, Just wanted to check in to see how things are going with your daughter. Hope things are settling down a bit. Deanna Link to comment Share on other sites More sharing options...
Chemar Posted July 1, 2009 Report Share Posted July 1, 2009 just checking on you myrose and hoping things are getting better Link to comment Share on other sites More sharing options...
mommyof2 Posted July 3, 2009 Report Share Posted July 3, 2009 Wendy just hinking of you...hope things are getting better. mary Link to comment Share on other sites More sharing options...
patty Posted July 4, 2009 Report Share Posted July 4, 2009 myrose, so sorry to hear about the waxing. hope things are settling. may i ask why you decided to take your daughter off the med? i know many of us here are seeking natural remedy but if it is working w/o side effects there is nothing wrong w/taking med to have quality of life. pat Link to comment Share on other sites More sharing options...
abbe Posted July 6, 2009 Report Share Posted July 6, 2009 [quote Hey Wendy, It's Abbe, Nicholas mom.. I FEEL your pain. One of the things that I did with Nick was to keep him on the 15 mg of topamax until I can figure this puzzle out. It really has enabled me to see what still causes him to tic but not so badly that he or I stress. We have been tic free since the mold drops. Funny thing is one combo caused him to tic really badly and this one stopped it. If you need to vent I am here.............. Link to comment Share on other sites More sharing options...
faith Posted July 6, 2009 Report Share Posted July 6, 2009 abbe, please, what are mold drops? is that from native remedies? Faith Link to comment Share on other sites More sharing options...
abbe Posted July 7, 2009 Report Share Posted July 7, 2009 Faith, Got them from my doctor called Toxic Fungi-Mold Nosode product code N18 company address on label Professional complementary health formulas P>O> Box 80085 Portland Oregan 97280 there was no phone number on bottle Is this something you want to try??? Link to comment Share on other sites More sharing options...
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