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Cristo-Krista

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Posts posted by Cristo-Krista

  1. 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 ?

  2. 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. 

  3. 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. 

  4. 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? 

  5. 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. 

  6. 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.  

     

  7. 1 hour ago, MAMA3 said:

    The vetiver seems to help our sons tics the most. We’re not really sure what it does other than possibly slow down the nerve sensory overload to the brain some. We apply it in the morning on his big toe when he’s getting dressed for school.

    Which brand do you use? Can we buy it at whole foods for example ?

  8. The thing is that his started at 14.  Sudden onset.  Severe.  Had tics when young.  Small.  Barely noticeable.  But after taking antibiotics ...tics happened.  Eating is a challenge now since he has entered the teen years.  I don’t think he believes there is a connection w food and tics or environment and tics.  Teens just want to be able to do things and not be different even though tics make them different.  

    The hospital you are going to with your daughter, what do you think they will or can do? 

  9. On 5/26/2019 at 2:25 PM, MAMA3 said:

    recent post on social media & they are also seeing positive results with changing diet & applying essential oils. I spend much more time at the grocery store checking labels on anything that is processed foods. I buy mostly fresh fruits, vegetables & all natural meats. We can always tell if our son eats something that is not within his diet. His tics are almost instantly much more visible & it takes a few days to get him back to normal. We are so thankful everyday to have our happy go lucky son back. We know that he may always have tics, but it’s so reassuring to know that it is controllable with something as simple as diet changes & his daily half tablet of  Guanfacine

    Which social media account do you post info?

    what is the guanfacine tablet? Any side effects?

  10. On 7/17/2019 at 9:20 PM, MAMA3 said:

    The oils helped so much with his emotions & also helped him relax more at night. I recommend the lavender & peace and calming at night. The valor promotes courage & strength & along with stress away helps to relax him at school without making him sleepy. The vetiver helps to relax their brain/mind, again without making them tired.

    The oils helped him relax and helped reduce tics?

    lavender 

    peace and calming 

    valor 

    stress away 

  11. On 7/17/2019 at 9:20 PM, MAMA3 said:

    recommend the lavender & peace and calming at night. The valor promotes courage & strength & along with stress away helps to relax him at school without making him sleepy. The vetiver helps to relax

    Where do you put the lavender and peace 

    where do you put the valor 

    where do you put hj stress away 

    its young living oils or du terra?

  12. On 1/27/2011 at 1:13 PM, evol said:

    My situation is probably unique. Yes, I have undiagnosed ts. Well, I saw a doctor once at age 21 and he prescribed clonidine. I took it for a while but it made me soooo tired that I just quit. Started ticcing around 7 and turned into full-blown ts around 14. It was never really addressed growing up other than my parents telling me to stop. I think they were just too embarrassed by the whole thing. They would threaten me by saying "if you don't stop by the end of this year, we are taking you to the doctor". I didn't want to be labeled as different or come to terms with the fact that there was something really wrong with me, so that scared me. I don't think that's all bad, however. I was very social and fine with my peers and am sort of glad I didn't have that "label". My late teen years and college were the worse, probably from stress. Sharing a dorm room was very difficult without having any privacy. I tried my hardest to control it and don't think I would have so much if it was out in the open and I think my symptoms would have been more rampid. I think it's an aweful and bizarre disorder to have in that you appear normal but have to contort you body in ways so you "feel" normal. It's been personally a difficult journey but in all actuality, I get along fine, aside from a small social anxiety issue. Nothing a glass of wine can't fix. My husband's mom has a chronic tic that comes and goes and his brother has chronic tic/OCD issues and my husband has some compulsive issues. None of them ever talk about it either. My husband's point of view is that everybody has something and no big deal. I don't think he knows how bad it can get and that's where I feel like I'm carrying all the stress, anxiety and burden. Even though he was with me since high school and has seen me for who I am, I've never talked about it with him so he has no idea what I've really gone through. I've gone on so long without talking about it that is seems like I have this huge secret. This forum is the only place I've ever talked about it and it feels so good knowing there is support out there. I keep waiting for the day that I have to have the "big talk" and I have no idea how he'll react. I think that is why, for me, the stress is doubled because I not only have to deal with my children's issues but the role I play in all of it. At this point, I don't even care about myself, I just want my kids to be healthy. I would take on symtoms a million times worse if it could spare them. I haven't ever mentioned the ticcing to my dd. I don't want to make her self-conscious about it and right now it's managable. It it worsens, then I'll deal with it then. Since my symptoms didn't worsen until I was 14, I'll be hanging on for a while. I struggle every day with the question of was it right to have children knowing I could pass this on to them. It's a gamble and 20 years from now I can better answer that.

    Thanks for sharing.  Our teen son won’t about it.  He gets upset when I start to talk about it.  Diet or vitamin talk in connection w talking about tics bothers him. 

    Did you used to hold them in throughout your life or not ?

  13. On 10/21/2018 at 9:58 PM, evemac said:

    I know it's hard not to despair, but my son who is now 14 was diagnosed when you was 5.  We did so much for him: diet/vitamin protocol, Occupational therapy, chiropractic work, meds, CBIT, and I would say to some extent, all of these interventions helped.  He feels pretty comfortable talking about having Tourettes and while he did have some difficulty with peers on occasion and I had to actually request a 504 by 8th grade to deal with the dysgraphia, I also give his teachers a well written article on disinhibition and what that could look like in class.

    I think advocacy and self-advocacy is important to our children with TS.  Unfortunately, people still don't really understand it but the best news is is my son has gone through this and is a strong academic and athlete and what's even more important than that is that he likes who he is!

    Keep up the good fight.  I remember crying at night with him when he was ticcing so hard he couldn't sleep.  I have been there! You are not alone!
    Eve

    All the things helped a bit ? Chiro? You did Cbit w him ? You tried meds ? Vitamin led and diets and OT?  

     

    What vitamins ? Which diet? What did OT do? Chiro ? 

     

    My son suddenly developed non stop head tics at 14 1/2 Sudden.  Explosive.  Non stop.   All of a sudden.  Normal one day and not the next.  Not sure how he feels   He hates talking about them and won’t.   

    I feel helpless.  Didn’t want Cbit.  Was embarrassed.  Went twice.  Held the tics in. The counsellor didn’t see any tics yet I said he tics every four seconds. She made him show her his tics after having me leave the room.  He hated being there. Didn’t want to go again. Went for physio a few times but held in the tics while there.  Went for acu but held the tics in while there.  The practitioner thought he didn’t have anything. Son held in tics while there.  Pediatrician felt the same way.  Then I took video footage and showed all of them.  They were shocked at how extreme it is.  I don’t know how hard it is to suppress  because he won’t talk about it.  It must be shocking to him because it is suddenly there.   Before he went went aware of little ones when younger.    

    Before when he was young I knew that food dye would have him blink.   Video games too.  Paint and renovations made his jaw move a bit   Before.   Now it’s just so intense and the extra triggers are everywhere as a teenager.  

    He doesn’t want meds.  He doesn’t want acu.  He doesn’t want cbit.  He went to massage.   Considering a naturopath.  Maybe he will be receptive.  The people stare at him when we are somewhere and he’s not around us (parents).  Like at the store.  Like in the mall.  Like at the park.  We see that. We give vitamins.  It’s very hard.  He had little tics before that weren’t so noticeable to anyone.  But suddenly at 14 1/2 they are because of an explosive onset.  

    Haven’t gone to OT.  Havent home to naturopath. Haven’t gone to Chiropractor.  

    They started after abx and an injury to the head and neck.  The abx made the tics explosive. 

     

    Dont know what to do

    does anyone have a similar experience ?

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