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  1. Today
  2. Starting new topic from below linked thread, since IVIg is the variable in our case. -DS19 has had six HD IVIg sessions (2 in 2018, 4 in 2019) and since January 2019 his vision cannot be corrected with glasses to 20/20. Has gone from 20/40 to 20/200 WITH GLASSES since January. I suspect it fluctuates because he's not complaining all the time, nor stumbling around, which one would at true 20/200 vision. -Has had 5 optometry and 1 ophthalmology appt. with 2 dilation medical exams. Eye structure itself is fine. -Waiting for a Neuro-Ophthalmology evaluation but since IVIg is the only thing that's changed, wondering if it's related. -Have call into PANS NP to discuss.
  3. Yesterday
  4. I'm sorry my answer was so short. I was trying to put my baby to sleep. I can't believe antibiotics gave your baby tics! Isn't it a horrible feeling, we both thought we were doing something right by our kids and it possibly hurt them. There is a lot of speculation on gut health tic connection out there, it's worth looking into. I just want my boy to be back to his self😭😭😭
  5. Last week
  6. I meant herxing ...not herding some ppl say that kids need to detox their liver or kidneys if they are herxing from the thing that caused the tics. I don’t know
  7. Hi sunflower Magnesium supplements Did he say what kind of magnesium? There are so many types it seems I think that certain things bring out tics in some ppl. In your son I agree w your thoughts that it could have been the vaccines that brought them out. In my son it was antbiotics that brought them out. I know because every time he had them he had tics then two weeks later they mostly subsided to the point of not being noticeable. Every time on abx. The stupid thing is that I gave abx again double the duration and the last time and suddenly after the dose and injury there were sudden explosive tics. Non stop. They never went away. Never. Not in over one year now. He holds them when we go to specialists but otherwise they are non stop. I’m devastated. Ive done so much reading. I’m just exhausted. I know that Antibiotics brought out tics in him. Abx also caused his face to look puffy and he had pallor. I’ve asked around. Abx doesnr help w ts or tics generally. Other people find abx helps w pandas or pans. Others say if someone has mycoplasma or Lyme or COinfections (pans) then the antibiotics should help but if they get symptoms like this then it means that they are herding and the bugs are killed off and the dead stuff circulates around and csuses problems. Cytokines or something. I don’t know. But bottom line when something (vaccines, abx, msg) brings out tics in a child ...it means something. It doesn’t bring them out in everyone. Some people. I don’t know why though. When a parent notices a sudden change then that must mean something. Right ?
  8. Soo. I don't know what to think. I guess it was positive. The doctor we saw is a director of movement disorders at neurology department of National Children's hospital in DC and has 41 years of experience. I guess he's seen it all. He did neuro exam, said my baby is perfectly healthy. Said his tics are a 2 out of 10. He sees this every day all day. Said the next few weeks will be most interesting as they could start winding down and taper off. Said he didn't have a crystal ball and every child is different. But 15 percent of kids have tics. Said transient can definitely be both vocal and motor. Also mentioned they could go away and then rear it's ugly head in puberty. But at the end said 80 percent of kids with tics do not have them at age 18, which should be encouraging. I have a blood order for chemistry, cbc, thyroid and some other stuff. He said wait and watch approach is a way to go and would not medicate my baby( good) unless tics are very bothersome to HIM Said magnesium supplements are a good idea.
  9. More Q&A from elsewhere: Some of you have looked at or downloaded the report for the previous pilot study at https://osf.io/pf7q2/ (there have been 174 downloads to date). Recently, I did an important update to that report. It was unfortunately a disappointing update to do, because it was to include statements (and corresponding analysis) about a Turkish genetic association study (the one presented at the Common Threads conference last year) that didn't replicate amongst our kids. It could be the case that genetics among Turkish P/P kids are not the same as among the mostly European kids of our study, so this doesn't mean that one or the other study is wrong. But even that scenario is disappointing, if P/P genetics is that complex. This lack of replication also does not mean that mannose-binding lectin (the gene implicated in that Turkish study) is not important among our P/P kids - there are very very many other SNPs in the MBL2 gene; this was just one. Q: please forgive me ... but can you clarify your comments in more simplified terms? A: Sure, and I can go just a little further, too. Someone else (in Turkey) says that there is a genetic variation they showed was related to PANDAS. Anyone with genetic data from lots of P/P kids can check that. We have some (collected back in January), but it doesn't show that genetic variation to be associated with PANS and PANDAS. This doesn't mean their study is wrong, or ours is wrong. It could be that the genetic variation they found was associated with PANDAS in Turkish kids, but not the (mostly) European kids we had in our data. This is disappointing. But we still do also have a result from our pilot study, that we are trying to show is true with a 2nd independent batch of data - that is one of the goals of this post requesting participation. It is a good idea to check a result by replicating (doing it again).
  10. It has been a while since I used it, and I don't fully remember. I don't recall struggling, though. I also used Promethease, and that was more difficult, but with much more results. I recently had recommended to me SelfDecode (www.selfdecode.com), but I haven't used it.
  11. Sunflower...When are your appointments w the neurologists? I feel like there needs to be a mix of alternative medicine, eastern and western medicine to help with our kids But w people who are well versed in this topic. Diet, oils, chiro, testing etc I too feel helpless Chemar...thanks for the info on thimersol. We passed on the vaccines so far. If wants to work or volunteer in a certain work setting, they make the volunteers and workers get vaccinated. In some settings or careers it’s mandatory. There are so many places that demand vaccines. He is now questioning things and believing that vaccines are fine. So as they become adults they make diff decisions. I will inform him about the info you shared.
  12. Yes, all the info I could find is on thimerosal. I always declined flu shots . He never had one. He had a good day today, fishing and playing. I'm still a mess, but at least I sleep better now. Our neuro appointment is on Thursday. I agree, from what I read on here, many neurologists are not so good and push meds right away. I made appointments with 3 different pedi neuros at 3 different places.( husband thinks overkill, but at least I feel like I am doing all I can to find the best one). I will let you guys know, what he says. Thank you so much for checking on us!!! ❤
  13. Sunflower, there is info re vaccines and tics on the Latitudes homepage, but it's primarily related to the thimerosal containing vaccines https://latitudes.org/vaccine-research-thimerosal-tics/ I hope things are a bit better there. Have you seen the neurologist yet? Hopefully they will be an open minded one, which sadly is the exception not the norm. But there are some really clued up excellent ones, so I hope that will be your experience! 🙂
  14. OK I have put these on your own thread for you, which should make it easier to follow, and for you to get more responses too.
  15. Neat = undiluted "Many drops" is way too much imo My son has never had a problem talking about his TS. We didn't realize that my husband, and his own father had it till my son was diagnosed. That was when the tics that ran in their family became understandable. They had been told they had "nervous habits" all their lives. Cristo-Krista, it's fine to keep discussing essential oils on this thread if you still have questions about those. That keeps this thread on topic.🙂 However, for any other questions, it would be best to ask on the thread now dedicated to your questions where I moved those other posts too as requested. Here's the link to it: https://latitudes.org/forums/topic/25718-tics-after-neck-injury-antibiotics/
  16. The company just want to learn from people’s data. I get it. Maybe cures can come out of it. That’s good. But there is another side too. People just want to know about their lives. Some want to find people genetically linked to them. That’s a whole other deal. That is good if that’s what they want. But not everyone does. Some just want to know about their genetics but want to just know themselves.
  17. That makes good sense. Or maybe those throw away credit cards perhaps like gift cards.
  18. We bought a few brands from the health store. We stopped when we saw his explosive tics. She said she did many drops on his pants, feet, back, neck and spine and saw that after school he wasn’t well. Could not stop in another post you said your husband and son have ts so I’m guessing that makes it easier for your son to talk about it . My son won’t talk and gets very upset when I mention the tics or take him to someone to treat them. He hadn’t met anyone who had sudden tics What is neat?
  19. If he is reactive to probiotics, best just stay away from them or maybe try them in fermented foods if he likes that? It really sounds like perhaps the antibiotics have done a number on his system and left him hypersensitive. I would consult the physician who has been treating his neck injury regarding the NUCCA or Atlas Orthagonal as it depends on what was injured in his neck as to what treatment is most beneficial. I am wondering if perhaps you would mind if I split your posts off here onto a separate thread, so that we can keep this thread for Sunflower's questions ?
  20. Just do remember that Essential Oils are concentrated and not all brands can be applied to the skin without use of a carrier oil. When used neat, one drop is totally enough! and even then it depends on the individual. Some people cannot tolerate all oils. ie they will react ok with one and very negatively with another. My son has always been that way. Just because something is natural doesn't always mean it doesn't have a potential for reactivity. We learned that the hard way and with much trial and error. It's the same with supplements....they are excellent and beneficial - but different people have different reactions.
  21. We usually only diffuse one to two drops of lavender in his room at night. We only apply a drop of peace & calming on neck, or feet if he is having trouble sleeping. We only use one drop of all oils we apply. Our sons tics come & go. I refer to it as a revolving door. He has days, or weeks that he is great & then they start all over again. They also move throughout his body too. The tics change constantly. We’ve found the diet has the most impact on our son & his guanfacine helps also. They all keep our sons tics at a minimum. We never really know when they may be more or less. We’ve done a lot of research & have found what works best for our son. Again, all kids are different. Have you been to a neurologist?
  22. During school time my wife put a little drop of lavender on his feet night plus jasmine and camomile and massaged it into his feet at night. Put a little lavender and camomile into a diffuser. He went to sleep so quickly. The next day the same. He seemed calm. Then the following day she put a few drops on his neck and back and spine and put lavender oil on his school pants in the spine area. Well that day he came home and wouldn’t stop ticcing. She stopped w the oils. The whole week his tics were out of control. I read that oils can cause a herx. Not sure if that’s what happened but it was horrible. He couldn’t contain the tics at all.
  23. He did probiotics boulardii and started having a snorting tic right after taking it. Like within half an hour. He doesn’t have snorting tics so this was new. I stopped the probiotic the next day and he didn’t snort. I put him on it later on and he did it within half an hour. So I stopped. Bio k seems ok as long as it’s just a little but otherwise his head tics increase. Kefir also brings them out more. Bifobactetium lactis is in a cereal that I give my twin babies and I give it to him sometimes and it seems to help him too but he doesn’t want it because it’s for the little ones.
  24. Which one would you recommend? around here... There is a chiro who isn’t NUCCA trained but has the atlas orthgonal machine. There is a NUCCA around here w but does not use an atlas Orthgonal
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