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7 years old boy has TS, Mom is heart broken


lele

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hi Lele

 

bed wetting can be a sign of PANDAS

 

what strep tests did they do that came back negative?

Really? Maybe I should get ds' strep titers tested, too. He has episodes of bedwetting but he usually just says that he wakes up too late to catch it or doesn't catch the body signaling him that he needs to get out of bed. Some nights he does, some nights he doesn't. And, most times it's not even enough to warrant changing the sheets b/c it's a small amount and then he wakes up. I just keep thinking that we're not really dealing with PANDAs with him, though. Hmmm, something to think about anyway.

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Bonnie,

my son does exactly what you describe, in the morning right before he wakes up or as he's waking up. he did wet for some years until a year or two ago, I started night waking him to go, and that helped, eventually I didn't have to wake him anymore. but he still starts to go before he wakes up, I always know because he usually wakes me up to get him a new underwear. I don't think bedwetting is all that uncommon, if you start mentioning it, you'll see other mothers fess up too. and may I proudly announce i was a bedwtter til about 10 years old myself..... :) ...... :)

 

 

Faith

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hi Lele

 

bed wetting can be a sign of PANDAS

 

what strep tests did they do that came back negative?

 

the step tests we did are 72h culture, ASO and Anti-DNase-B Titers, they are all negative, and he never shown any OCD and ADHD,he is as sweet as before.

 

This makes me so hopeless, since PANDAS is easy to treat.

 

I am so frustrating now, my son just has TS for 6 months, and he developed several different motal tics together, today he even shows some upper back tis alone with neck jerking and lifting arms, eye rolling.... I don't know what I can do to help him

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PANDAS is not necessarily so easy to treat. many of the kids that have this have symptoms that can be pretty severe and it is not an easy fix. repeated episodes of strep exposure or illness can set them back and antibiotics are not a quick cure. some need way more invasive treatments to keep this under control and their symptoms and struggles are more than just tics. just wanted to say that.

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PANDAS is not necessarily so easy to treat. many of the kids that have this have symptoms that can be pretty severe and it is not an easy fix. repeated episodes of strep exposure or illness can set them back and antibiotics are not a quick cure. some need way more invasive treatments to keep this under control and their symptoms and struggles are more than just tics. just wanted to say that.

Thanks for helping me, that makes me feel better, Faith

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lele,

 

i understand your frustration. if your son's tics are triggered by food/airborne/chemical allergies, then look into NAET for allergy desentization. it has been very helpful for us. also, look into craniosacral therapy. it has helped a great deal w/my son's neck tic. both modalities i mention is noninvasive and has helped my son tremendously.

 

in the meantime, clean up the diet, do the epsom bath & creme, and practice tummy breathing 3-5x a day, about 3 repetition each time. the breathing helps to relax & reset the nervous system. this is not a quick result technique. for us, it took about 3 weeks for us to see some results.

 

before you try any supplements, it may be worth the while to work w/a practitioner who does muscle testing to see if the body is strong or weak to the substance ( if your child is super sensitive) to avoid aggravation.

 

if you think allergies is the route you want to take, then i would start w/food, then move on to environmental issues later.

 

i hope this info helps.

 

pat

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Patty,

 

 

i noticed you had success with NAET. I took Nick to a NAET person in our area but I really didn't like her (neither did he) she was cold, abrasive etc. Their is o one else close by!! Can you tell me in what ways it helped your child?? Also the cranio sacral work . did you do through a chiro.???

 

thanks

 

abbe

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Abbe,

 

NAET has helped w/my son's food & environmental allergies, asthma & tics, along w/ a comprehensive approach (clean diet, excercise....) and craniosacral therapy.

 

I did not see an immediate tic reduction, it was a gradual process over the course of about a year then i start to see some moderate changes.

 

As for CST, i start to see result after the 2nd OV for his neck tic. I started w/ a chirop who did CST and did not see much tic improvemt for about 7 mos (maybe a slight improvement).

 

Then i went to a ND who teaches CST and she made a difference. So what i learned is that the therapy can only be helpful if one is good at it. Our first CST was a massage therapist and we did it for 4 mos and made absolutely no difference.

 

Pat

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Pat,

 

My chiro. does cranial work . He puts gloves on then adjusts the jaw manually. I haven't taken Nick for awhile because I neer knew it could be helpful for tics. although the very first time Nick had a neck tic (the turtle one) I took him there cuz I thought he had a sore neck. I didn't even know what a tic was (those were the days lol) I might consider going back though. The only naet provider in nj I went to and I didn't like her at all. She was so nasty . I just don't want to take Nick to a new dr and drive to phila. if I don't have to. So I am going to ask Dr. Chung his doctor maybe to do it. He said he learned the technique but stopped doing it because he didn't see the effectiveness. I think maybe I should learn how to do it myself

 

 

 

abbe

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Abbe,

 

you & i are on the same page. i found NAET so helpful, i looked into taking their classes. on their website, it says you have to be a medical professional. i was bummed but will call to confirm that.

 

hope you find someone in your area. have you tried logging on the NAET website for referral? i believe is www.NAET.com

 

pat

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Pat,

 

Just spoke with Dr. Chung. You do have to be a licensed dr., nurse, pt etc. to get the schooling. He told me the reason he doesn't do more of it is because he was overly impressed with the results but he could do it with Nick. He said it takes about 5 minutes to learn and told me how . He also told me that another Dr. in his office does the cranial work. I think I will try it. Hey it' s only money.................

 

 

abbe

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abby,

 

the process of NAET is very easy. My practitioner just have my son hold the vial and go thru the pressure points so the body doesn't produce antibodies next time the body comes in contact w/ the allergens.

 

the skill comes in muscle testing and protocol in treatment procedures. we have been doing this about 31/2 yrs off & on and have learned alot based on my son's results. things are not always what it seems. i read 2 of the founders books to have an understanding of what NAET is about and its capability. there were times things were treated and my son was still having problems. now, the practitioner would not know this because once the treated item test strong, she just assumed it is fine. you need to be a good observer and lead your practitioner. it is very much a partnership, esp in my son's case because he is not your typical population that respond to treatment. Luckily, my practitioner is very easy to work with and does not have a big ego. it is such a learning and think outside of the box processs.

 

the success i get from NAET is largely attributed to detail record keeping and an keen eye for observation. doing one thing at a time is also very helpful. Also, it is important how you collect the sample and those are the things i learned from our own experience.

 

good luck! is your dr. willing to teach you to do NAET?

 

pat

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abby,

 

the process of NAET is very easy. My practitioner just have my son hold the vial and go thru the pressure points so the body doesn't produce antibodies next time the body comes in contact w/ the allergens.

 

the skill comes in muscle testing and protocol in treatment procedures. we have been doing this about 31/2 yrs off & on and have learned alot based on my son's results. things are not always what it seems. i read 2 of the founders books to have an understanding of what NAET is about and its capability. there were times things were treated and my son was still having problems. now, the practitioner would not know this because once the treated item test strong, she just assumed it is fine. you need to be a good observer and lead your practitioner. it is very much a partnership, esp in my son's case because he is not your typical population that respond to treatment. Luckily, my practitioner is very easy to work with and does not have a big ego. it is such a learning and think outside of the box processs.

 

the success i get from NAET is largely attributed to detail record keeping and an keen eye for observation. doing one thing at a time is also very helpful. Also, it is important how you collect the sample and those are the things i learned from our own experience.

 

good luck! is your dr. willing to teach you to do NAET?

 

pat

Thanks everyone for helping me, I got a lot useful information from here, is any one heard about biofeedback therapy for tics?

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