keeptrying
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Posts posted by keeptrying
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I appreciate the response. Sorry it did not help your son. The only reason we are going to continue to try is because I know it has helped some. Maybe this time we might catch a break.
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Been one week since acupuncture and my dd's tics are still increased. Has this happened to anyone? Worried if I should do our next appointment. Some say the reactions get less and less with each appointment. Anyone agree??
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Has anyone experienced a herx reaction after having acupuncture. My dd's tics increased after her first appointment along with developed new tics too. It has been 3 days and no relief yet. Anyone have an experience to share?
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Thanks - I am going to post and see who has experienced a herx. If you know of who I may ask, I would appreciate it. I have done a lot research looking for someone - found a neuro clinic but even they didn't have too much experience with TS or tics. I decided my best bet was with a pediatric acupuncturist. It seems like a TS doc is rare unfortunately.
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No I don't think too much. Not TS but tics. Why should that matter? Help!!
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So my dd had her first acupuncture appointment this Saturday and her tics have been increased ever since. What does this mean? Is it too soon to expect any change? I know everyone will react differently and possibly not at all - but I didn't expect this. Any advise??
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Thank you for the help.
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Chemar and crazy - did you find the acupuncture helped with all over tics or just facial? I have read it being most effective for facial tics . My dd has neck tics too - they are the most bothersome at the moment for her. Sorry if that is a dumb question - just reading too much I suppose.
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Thanks for this. We have our first appointment on Saturday. I am hoping for the best. We have tried many things without much success so I am keeping my fingers crossed.
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Thanks Crazy (feel kinda bad calling you that..) for your response. I have read about tics getting worse after and that is making me a little nervous but sounds like it doesn't last too long.? Would you mind telling me how long until you noticed it making a difference? Just want to be realistic. Thanks!
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I have seen some old threads on acupuncture, can anyone share any recent experiences with it and if it has been successful? my dd13 has just said she would like to try it. Any advise is appreciated. Helped or hurt the situation??
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Can you tell us what tests were run and how the infection was found? I have tried a lot of testing for my dd but fear we may have missed some. Thanks.
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now that tdap is required, I can no longer slide under the radar at school. I know there are exemptions but also know our doctor doesn't agree with me (her own child has TS) and probably won't write letter. We are just now trying HRT and trying to get a handle on the tics and I am terrified of what could happen. Has anyone given tdap to there child and had any or no problems?
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thanks for the replies. This really helps.
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my dd 12 has mainly tics. Can anyone tell me if they have had success lowering tics by using intuniv? I know it is mainly used for adhd but how has it worked for lowering tics? I have read many past posts but most have used intuniv with other meds and my dd is not taking anything. Any info is appreciated.
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My apologies - It is Comprehensive Behavioral Intervention for Tics. I wrote it wrong! Look up Sabine Wilhelm and CBIT and you find studies done on it. I have been communicating with one person who says it has been helpful.
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Has anyone tried Comprehensive Behavior Integration Therapy - CBIT? I am looking into this for my dd11. No other treatments or methods have worked for us. I have been reading about this and it has some medical studies to back it. I would be interested if anyone has any information on this. Only a few have taken the training in Northern California and won't even be available for sessions for a few months. Thanks.
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My ds took Alinia toward the beginning of Lyme treatment, and we also were able to get it in the U.S., but our insurance covered it. He never had any problems/herxing on this medication. The only time we've seen obvious, troublesome herxing is with Cipro and then with Babesia treatment. We never saw a huge positive change, only slow change in small increments over a long period, so I could never point to one medicine or another as being responsible.
I'm sorry to hear you're feeling discouraged. How long has your dd been in treatment for Lyme/coinfections? You haven't seen any changes whatsoever?
Thanks so much for the response. I am glad to hear that Alinia did not cause any problems with your ds. I am very discouraged but also know that we are only 6 months into treatment so need to be realistic. We started biaxin and mepron in December. We stopped mepron a month ago and switched to septra at that point along with the biaxxin. Now we are staying on septra and dropping biaxin for alinia - confused yet - me too. Anyway. There have been no real changes at all in these past months. There have been times when my dd's tics have gotten lower but they always seem to creep back up. This is her pattern and always has been. We had an IND babesia test and recently it went to NEG but still no significant change in tics. Yes, I am deeply discouraged. I worry that this is not the right treatment. I read of kids starting an abx and within days see a difference - that has never been us. I read a lot of things that have never been us. I suppose I have no other choice but to continue on. I hope your ds is doing well.
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My dd11 has just stopped Biaxin and now starting Alinia. We had to order this from Canada Pharmacy since we can't it here in US (which makes me nervous). My dd is also taking Septra and will continue it while on Alinia. Can anyone share their experience with this abx? Any side effects or problems while taking it? We seem to be going from drug to drug just waiting for something to "work". Not sure of any of this any more. Not even sure there is infection. Any comments would be appreciated. Feeling defeated at the moment.
Thanks.
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I don't have any experience with either of these, so was hoping someone else would chime in. What are you doing for detox? What, if any, additional supplements are you using? Have you ever used magnesium for tics?
I am not giving any additional supplements. I was told we could do daily detox teas, take ibuprofen and/or benedryl, as well as drink lots of water. We are doing all of that and nothing helps. Also, have tried epsom baths on and off for years and it is never lowered her tics. A few years back, I supplemented with magnesium for almost a year and it never helped. I am at a loss. I am not sure why these detox methods work for most people but nothing has really ever helped my dd. I have even tried charcoal tabs and it only caused stomach aches.
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my dd10 is on her 6th day of mepron and biaxin. As expected, her tics have increased along with minor headaches on occasion. Nothing helps to calm it down. I am new to babesia treatment, still not sure of diagnosis even. All I know is I have to try this. Anyone have this problem? Everything I was told to try, I have and nothing has ever helped her. Is this the way it is? Do you just suffer through? Hardest part is how long and how bad? Any help would be appreciated. Only symptoms are v/m tics and anxiety. She has been waking at night on occasion too. That used to happen when she was younger but not much anymore.
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I did an herbal challenge with A Bab and A myco for my dd. She reacted to both with in 48 hrs. Her symptoms remained raised for a week or so but eventually came down when stopped. They are very powerful. My dd actually woke up early in am vomiting with low grade fever after the A Myco. Good news is that it gave our LLMD some very good feedback. Good luck.
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thank you to those that replied and even viewed the post. I appreciate the help and support. Seems like a lot have tics but also some type of bone pain or other typical TBI symptoms. I am not sure my dd has any of the "typical" symptoms. If I was being honest, I would have to say that my dd is very forgetful and "doesn't listen" a lot. I have often wondered if this is a symptom too. I can tell her something and she seems to be paying attention then moments later she proves that she was not at all paying attention. How much of that is just typical 10 yr old behavior though I have to wonder. I was told that a dry cough can be a sign of babesia too which is something my dd does a lot. It is mainly with physical exertion like running or playing around with the dog etc. She has done this for years, wonder if this is a symptom too? Not sure of much anymore.
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Yes we have motor tics along with some typical lyme/bart symptoms. Some symptom lists have it classified as twitching but to me they are tics. My son has specific facial tics which is on the long list of symptoms. Throughout the last 3 years howvever, he's had mild vocal and body tics. I've seen them come, go and change. Right now I've added in grapefruit seed extract again, (I'm pulsing) and each time I see the tics leave and fatigue come. I believe the body reacts the same way it would with PANDAS.
thanks so much for this. Can you tell me why the ge extract? Are you also doing treatment for the lyme/Bart?
Experience with Hypnosis in Tourette's, especially Dr. Lazarus
in Tourette Syndrome and Tics
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Yes, we saw Dr. Lazarus. My ddwas young at the time (6 or 7) and it did not work for us. If your child is very bothered by his tics and truly wants to do something about it then it may work for you. The kids are given things to do at home to practice the technique. If you have to monitor and encourage your child it won't work. The internal motivation is what is needed to be successful. I was also turned off by how expensive the therapy is now IMO. When we started it was half that cost. I'm not sure why Dr. Lazarus has increased his prices so much. It is disheartening for those people that could benefit from the treatment yet can't because of the financial burden. There aren't many that specialize in this field and it is just unfortunate that it is so costly as studies are showing some success.
I wish you much luck should you try. I have been there wondering if I should try something or not. I know how hard it is and I'm sorry for the pain I know it causes.
All the best.