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justkeeptrying

Our experience with Repreeve

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I have been lurking around these forums for about 10 months now. I just signed up now because I wanted to report our experience using Repreeve. I guess my story is no different from anybody else's here. To summarize it is a story of misery, desperation, helplessness, worry, but also determination and perseverance, driven by the deepest love for my DD (who just turned 10). She started having very mild tics when she was in kindergarten. I was sent home multiple times by many, many doctors. She started getting worse in April (2015) when she was 9. She had different tics that continually changed from one to another (head bobbing, abdominal contractions, eye blinking and rolling, neck stretching, and seizure-like tics that were very scary, etc.). We tried diet intervention according to what she tested sensitive to, heavy supplementation, and almost everything else in between, which could be material for a whole book! In November, her tics had changed from motor to vocal ones. She could no longer be under the radar at school. They were constant and SUPER loud. We were so desperate. She had to be kept home from school for an entire month, and she was starting to feel very sad and isolated. Since I have been on "research mode" for the past 10 months, I came across Sheila Rogers' post on those new patches (thank you so, so much Sheila!), and out of desperation I decided to order a sample (which by the way was free). I am very happy to report that even though my daughter's tics are not 100% gone, she is finally doing much better, and has been able to return to school.

 

I am sharing this story to encourage you guys to ask for, and use their sample. Who knows? It might bring some relief for your child, and you have absolutely nothing to lose.I really didn't expect the patches to work for my daughter because she is a PANDAS/PANS child (by the way 9 mos. on antibiotics never made the tics go away either). I also started DD on the Feingold diet on Dec 31 which I know is also helping, but the tics started to diminish while wearing the sample of the patches (5 days before starting the diet). Since she is a PANDAS/PANS kid, the patches are not obviously the only thing we are using around here. So, I do not know if the tics were meant to diminish on their own, but for me, it is too much of a coincidence the almost immediate relief my daughter enjoyed after 9 months of being completely annoyed by her tics. She says the patches are diminishing her urges to tic.

 

I just hope this post can at least help one child and his/her family out there. Good luck everyone!

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Note: Links below have been updated to the current website

Thank you very much for posting about your daughter's improvement with Repreeve patches. As you indicate, these were sent to you on request, free of charge.

I know that the founders of Repreeve have wanted nothing more than to learn who is most likely to benefit from this approach. (They sell a larger supply for a modest amount.) All they asked from their free users was to give them feedback as to whether it helped or not.

They have some positive testimonials on their website, and it's nice to also have a report here. (We had let Forum members know about Repreeve in a previous post.) 

They certainly do not help everyone, and that is why a free trial is sent by the company.

Justkeeptrying, I hope you will keep us posted on how things go.You have really been through a lot as a family in dealing with so many very distressing tic symptoms. And as your display name tells us, you weren't going to give up in looking for answers,

Please know that we all join you in celebrating the major reduction in your daughter's vocal tics.

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I have been lurking around these forums for about 10 months now. I just signed up now because I wanted to report our experience using Repreeve. I guess my story is no different from anybody else's here. To summarize it is a story of misery, desperation, helplessness, worry, but also determination and perseverance, driven by the deepest love for my DD (who just turned 10). She started having very mild tics when she was in kindergarten. I was sent home multiple times by many, many doctors. She started getting worse in April (2015) when she was 9. She had different tics that continually changed from one to another (head bobbing, abdominal contractions, eye blinking and rolling, neck stretching, and seizure-like tics that were very scary, etc.). We tried diet intervention according to what she tested sensitive to, heavy supplementation, and almost everything else in between, which could be material for a whole book! In November, her tics had changed from motor to vocal ones. She could no longer be under the radar at school. They were constant and SUPER loud. We were so desperate. She had to be kept home from school for an entire month, and she was starting to feel very sad and isolated. Since I have been on "research mode" for the past 10 months, I came across Sheila Rogers' post on those new patches (thank you so, so much Sheila!), and out of desperation I decided to order a sample (which by the way was free). I am very happy to report that even though my daughter's tics are not 100% gone, she is finally doing much better, and has been able to return to school.

 

I am sharing this story to encourage you guys to ask for, and use their sample. Who knows? It might bring some relief for your child, and you have absolutely nothing to lose.I really didn't expect the patches to work for my daughter because she is a PANDAS/PANS child (by the way 9 mos. on antibiotics never made the tics go away either). I also started DD on the Feingold diet on Dec 31 which I know is also helping, but the tics started to diminish while wearing the sample of the patches (5 days before starting the diet). Since she is a PANDAS/PANS kid, the patches are not obviously the only thing we are using around here. So, I do not know if the tics were meant to diminish on their own, but for me, it is too much of a coincidence the almost immediate relief my daughter enjoyed after 9 months of being completely annoyed by her tics. She says the patches are diminishing her urges to tic.

 

I just hope this post can at least help one child and his/her family out there. Good luck everyone!

 

 

 

How long did your daughter wear the patches before noticing her tics start to diminish?

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The company sent me a 3 day sample. During those 3 days, the difference we noticed in her tics was dramatic and more than enough to move me to place an order. Since it was around Christmas time, there was a delay in the shipment, so her usage was interrupted for a few days, and we did see the tics increasing during those days. On December 31st, we received the order, and by December 3rd we were able to go out with her again after being stuck in the house for over a month due to her loud tics.

 

To be honest, we have noticed some head jerking coming back (starting Tuesday). DD is allergic to dust/dust mite and she was exposed to it on Monday. There are other viruses going on at school as well. I am not sure but that might be the reason some tics are coming back. It is worth noting that they are less intense than they were before wearing the patches. All in all, we are very happy with the results we have seen with the patches, but still keeping our fingers crossed around here.

 

Hope this helps!

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The company sent me a 3 day sample. During those 3 days, the difference we noticed in her tics was dramatic and more than enough to move me to place an order. Since it was around Christmas time, there was a delay in the shipment, so her usage was interrupted for a few days, and we did see the tics increasing during those days. On December 31st, we received the order, and by December 3rd we were able to go out with her again after being stuck in the house for over a month due to her loud tics.

 

To be honest, we have noticed some head jerking coming back (starting Tuesday). DD is allergic to dust/dust mite and she was exposed to it on Monday. There are other viruses going on at school as well. I am not sure but that might be the reason some tics are coming back. It is worth noting that they are less intense than they were before wearing the patches. All in all, we are very happy with the results we have seen with the patches, but still keeping our fingers crossed around here.

 

Hope this helps!

Great info and thanks for sharing. Our 7 year old son has developed motor tics and our neuro prescribed him 1mg of Gaunfacine daily. Our son has been on it for about 5 days now and we haven't seen much improvement. Would Repreeve be safe to try as well? Any advise would be much appreciated. Thanks.

Edited by mge_1

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mge_1,

 

When we took DD to the neuro, she didn't want to prescribe anything unless the tics were to a point of disrupting DD's normal life (which by they way, they were back in December). The dr. was very clear with us. She said, "medication may or may not help. We will have to try and find the "right one" at the "right dose" to see if there is any improvement on her tics". I didn't want to go that route at the moment because there was a lot of trial and error involved. So, I am sorry I can't be of any help regarding medication and tics.

 

What I do know is that DD's naturopathic dr. contacted Mater Technologies to find out more information about the patches because he wanted to make sure the patches were safe for my daughter, and he is on board! There are no side effects other than a little skin irritation on the area, but you can move them around a little bit (they will explain everything to you). DD's tics were so bad that she rather have a little irritation on her skin than tics. Our ND said it was okay to keep her on the herbs and supplements plus the patches at the same time. You can contact them and ask them if they have had an experience with a kid wearing patches while taking medication. I am not a doctor, but I don't see why you should not at least try them. You will know fairly quickly if they will help your son.

 

Just to update: The minor head jerking my daughter was presenting went away after her classroom was clear from the virus that was going around. I was expecting another tic to emerge after the head jerking, as it was usually the case with her. So far, so good. She is still doing very well (knocking on wood!).

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mge_1,

 

When we took DD to the neuro, she didn't want to prescribe anything unless the tics were to a point of disrupting DD's normal life (which by they way, they were back in December). The dr. was very clear with us. She said, "medication may or may not help. We will have to try and find the "right one" at the "right dose" to see if there is any improvement on her tics". I didn't want to go that route at the moment because there was a lot of trial and error involved. So, I am sorry I can't be of any help regarding medication and tics.

 

What I do know is that DD's naturopathic dr. contacted Mater Technologies to find out more information about the patches because he wanted to make sure the patches were safe for my daughter, and he is on board! There are no side effects other than a little skin irritation on the area, but you can move them around a little bit (they will explain everything to you). DD's tics were so bad that she rather have a little irritation on her skin than tics. Our ND said it was okay to keep her on the herbs and supplements plus the patches at the same time. You can contact them and ask them if they have had an experience with a kid wearing patches while taking medication. I am not a doctor, but I don't see why you should not at least try them. You will know fairly quickly if they will help your son.

 

Just to update: The minor head jerking my daughter was presenting went away after her classroom was clear from the virus that was going around. I was expecting another tic to emerge after the head jerking, as it was usually the case with her. So far, so good. She is still doing very well (knocking on wood!).

Thank you for your reply I really appreciate it. We have an appointment with the neuro this coming Wednesday (17th) and they are in my notes to ask. Glad to hear things are working out for you and your family. Regards.

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I have a 10 year old son who developed tics at age 7. I just wanted to share my experience with Repreeve, in hopes that it might help someone as well. My son sleeps better, is calmer and does not tic as much while wearing the Repreeve patches. The most noticeable tic that disappears is the constant lip licking! I could not believe it, but even my son wants to wear them so that he does not lick his lips. He often asks me to give him new patches at night so that he can sleep better. I would encourage people to give them a try in hopes that they could help you too.

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Thank you, Tam, and others who have shared their experience with Repreeve. These are encouraging and I hope others try this approach and report their experiences so the developers can determine who it helps and who it doesn't. I'm happy for all who saw improvement!

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Hi, I am based in the UK and I have recently received a free sample of Repreeve. I tried them in my daughter today and hoping that over the next couple of days that we notice a difference.

 

Can I please ask how important is the location, I have placed them on the wrist and front and back of my earlobe but do they need to be in an exact position

 

I am really grateful to mater technologies for posting to the UK so I can try them

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Hi Everyone

 

We are on the second day of trying out repreeve for our son.I did notice that it brought down on of his tic (sticking his tongue out) on the first day.I just wanted to find out how many days does it take to notice a good change in the condition before I order a month supply ? I am keeping my fingers crossed on this one ! as we have tried so many treatment options already and nothing seems to be helping our son !

 

Best

vIK

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The Repreeve website that Sheila linked to now returns a 404 Error.

 

What I did find is this, on the Latitudes website.

http://latitudes.org/can-repreeve-help-nystagmus-tics/

 

Which links to the company that makes Repreeve.

 

http://matertechnologies.com/

I have no personal experience; our PANS kid doesn't have tics.

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Thanks for pointing out the link problems, Wisdom_seeker. I just updated them.

Note: Links below have been updated to the current website

Thank you very much for posting about your daughter's improvement with Repreeve patches. As you indicate, these were sent to you on request, free of charge.

I know that the founders of Repreeve have wanted nothing more than to learn who is most likely to benefit from this approach. (They sell a larger supply for a modest amount.) All they asked from their free users was to give them feedback as to whether it helped or not.

They have some positive testimonials on their website, and it's nice to also have a report here. (We had let Forum members know about Repreeve in a previous post.) 

Note: The patches do not help everyone.

 

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Hi Everybody,

I read with interest about the Repreeve patch. I am just wondering whether anyone has managed to get a sample recently? I registered for a sample and is still waiting for someone to get in touch with me. I tried to call them, but it went into a voicemail.

I am ordering the sample for my 17-year old son. My son was diagnosed with TS when he was 6 years old. At that time we put him on gluten free diet and gave him small dosage of haloperidol and some supplements. His tics was under control and was hardly noticeable till about one year ago. Now he is making very loud vocal tic (shouting) at the frequency of every 2 to 3 minutes. There are days where he has to skip school. Haloperidol and diet does not seem to work on him anymore.

We are quite desperate, we hoping the Repreeve patch can help to a certain extent.

We stay in Singapore.

Thank you

Sutjipto

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