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Deanit

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Deanit last won the day on July 27 2021

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  1. Ok, that is interesting...I didn't know that PANDA/PANS could present with no other issues. Will definitely persist in getting that blood test. Yes, I suppose anything is possible with this neck cracking. We will be getting an MRI on his neck to see if there is anything physical going on there. He says he does it because he needs to release it and it makes him feel better. The second neurologist asked him if he could control it then she put a timer on and asked him to not do it for a minute. He didn't do it. That was her test, I suppose...for what, exactly, I don't know because I know tics can be suppressed...so he could have just been suppressing it. I looked into NUCCA and it sounds very interesting. I even emailed several chiropractors in the area to see if they were familiar, but I heard nothing back. The pediatrician will try to recommend a kinesteologist...which is similar to a chiropractor here and we may try that route. Due to the lack of other tics or other issues, it just seems more and more to be to be a habit that he formed...which I suppose is a tic...but I just have not found the origin. My wife and I are, of course, prepared to ride it out regardless, but it is just so frustrating to visit so-called experts and no one seeming to really know what is going on. My pediatrician keeps saying that it's not Tourettes because he would have all these other symptoms...and it would be explosive, but just from my own research, I know Tourettes can present with no comorbid conditions. Any continued advice and suggestions would be greatly appreciated. Thanks! Nadine
  2. Hello, again, Chemar! Yep, we are doing all the things you mentioned except for the nucca massage…I haven’t had any luck one here; however our pediatrician will ask around for a rec for kids. She also gave is a script for an mri on his neck to make sure there is not anything physically wrong there. (Can u imagine a 6 year with a neck tic old sitting still for 20 minutes?) We also have the big scratch allergy test coming up. Things we have done: Daily vitamins: mag fish oil b complex multi Vitamin d and k spray we are now gluten free cut wayyyyyyyyyyyyy down on sugar drastically cut tv time… we have air cleaners in the living room and his bedroom we have dehumidifiers in the living room and bed room we got rid of old couches and rugs —he is allergic to dust mites got new mattress and pillow for him with dust mite covers been working on yoga and meditation he’s a physical guy, so we get him out each day for lots of exercise…soon he will be in soccer, tae kwon do, gymnastic, and swimming magnesium baths every night… I olay super zen sleepy music to relax him and will often drape a warm towel around his neck duri g his bath we also apply magnesium lotion after the bath earlier bed time…he sleeps really well…that has never been an issue, really recently got some essential oils, but haven’t had enough time to try them; although I usually add a few drops of lavender to his bath as well. we’ve been to a tic neurologist specialist, a pediatrician, and a second neurologist. All 3 doctors now have all called this a “transient” tic even with the reported persistent cough which is now gone. I have not noticed any other motor or vocal tics aside from the neck cracking. Strangely, the neurologists both independently mentioned PANDAS or PANS, but I have not noticed ANY personality changes; however, we will get that checked next. As you mentioned, I am actively trying to find the origin of his neck cracking whether it be diet or anxiety, but I have not had any luck finding the source. We are now at about 2.5 months of this motor tic. So, the reason I keep stressing on “finding” another tic is because I am am still trying to figure out if this is, indeed, a transient tic, with a coincidental persistent cough or if this is tourettes. From what I understand in my limited research, is that the “cause” of a transient tic is different than that of Tourettes. Meaning that Tourettes is a neurological disorder in the brain that is causing uncontrollable (although may be suppressed for some time) twitches. Whereas, a transient tic may just be a glitch in a growing brain or the body’s way of releasing energy. I know both can be similar, but there seems to be more of a genetic disorder if we ate talking true Tourettes. Please correct me if I am wrong. Therefore, although, the approaches to addressing both have many similarities…there are also some physicality's that would make them also different and might, thus, change some of the treatments? Anyhow, I’m in that year limbo stage where I’m still just trying to figure out what I am dealing with, and all the medical experts I turn to seem to have no real idea. So, I guess my question is, is there a difference between a transient tic and Tourettes. I’m basing a lot of my knowledge, perhaps falsely on dr. Wikipedia. Thank you again for all of the continued wisdom…
  3. Ok, so I’m still here trying to figure this all out. My son had a persistent cough and then started a couple months later to crack his neck. Pediatrician says she thinks the cough is an allergy and gives is a medicine protocol for a month. During the month the cough continues and the neck cracking ramps up. Until the second to last day of the medicine protocol, and the cough goes away. Now we are left with neck cracking. It’s been about ten days… I have mot noticed any other vocal tics. Is the neck cracking considered one motor tic or two? The neurologist specialist that we met with (for five minutes) said both were tics. So, now am I just waiting to see if another motor tic develops to qualify under tourettes criteria? Or am I now also searching for a new vocal tic since the cough went away with medicine? Or maybe the neck tic will go away…it’s pretty frequent in the evenings. This is such a roller coaster nightmare. Thoughts?
  4. We just got back from the neurological appt specialist that I found in Belgium. He says it is now categorized as chronic tic disorder and will either away or we will meet with him in a year for the TS diagnosis. The whole thing was very disappointing on so many levels. First, I was hoping he would just say (like my pediologist) that this is nothing. Don’t worry. But he didn’t he called it out. Secondly, the meeting was very short…a few questions, then his card and basically a “have a good day.” Very little info…I mean all I know I’ve read on the internet. He was very nonchalant about the whole thing. “I’ve seen thousands of cases…and it will either go away, or it won’t.” Meanwhile my whole world is shattering beneath my feet. I just don’t know how to feel or what to do. Meanwhile, my son’s neck cracking has really ramped up in frequency, and I feel so lost.
  5. Hello, silver77! We have also been on a mostly GF (had a couple of slips during our vacation). It’s been over a month, and I’m not sure I’ve seen any difference. I am also considering going DF, but that will be a very big challenge. We did see a big drop in tics during our vacation, so I hope you have a chance to just het out there and enjoy some fun and sun and not worry!
  6. Thanks fir the reply, Chemar. We have a neurological appt. on Monday and much of how we continue will depend on that…but I have considered chiropractic treatment.
  7. Also, Chemar…I have been reading all the books and doing all the things. We haven’t cut dairy yet, but may fo there next. Thanks for being a mainstay on this site to offer ongoing hope.
  8. So we have been back from our vacation for a couple of days. During our trip the tics (coughing, neck cracking) were very minimal. If you weren’t aware, you wouldn’t have noticed. I was feeling hopeful. We continued with gluten free food on the road for the most part and sugar free and all the vitamins (fish oil, b, multi, and magnesium, and we traveled with his new dust mite free pillow-his blood test came back with dust mite allergy. He had PLENTY os sunshine and lots and fun and running around outside. However, since we have been back home, the neck cracking has become way more pronounced. He stretches his neck back in order to crack it and then sometimes also turns it to the side to crack. The cracking is often loud. Yesterday, he became frustrated and cried because in doing these moves, he said it wouldn’t crack and that was bothering him. I massaged his neck with magnesium lotion which he said made him feel better, but he continued to turn his neck to try to crack it. I put on some “past tense” roll oil on his neck (terra oil which is supposed to relieve tension), he also said that helped. He had a friend over later in the day, so the cracking was minimized, but came back later. This morning when he woke up, we all piled in the big bed together and cuddled. He started rolling his neck again, and he said, “Mommy, the cracks are more quiet today.” I asked of that bothered him and he said it did. I tried to ask him about what he felt before cracking his neck, and he said it made him feel comfortable. I asked if it was tense…but he didn’t really understand what I meant. He said, “Why do you think I crack my neck?” I told him it might just be a little tic and nothing to worry and he will probably outgrow it. Otherwise, we don’t talk about it or mention it. Has anyone else experienced this neck cracking tic? Is it possible it will fo away? What did you find helped with this tic? We see a neurologist Monday. Thanks for continued guidance and information.
  9. Hello Chemar…thank you for checking in. I was on a horse ranch in Croatia with no internet connection, so I was able to get out of my mind a bit. We ate back in a city, so I find myself googling again. I continue to be in great fear…I was hoping that during this vacation that all of these little tics would go away with all the nature and sunshine, but no. The little cough continues…we are on a 30 day protocol for what the pediatrician says may be hay-fever allergy. He now crack his neck with a slight nod…it’s not very noticeable, but I notice it. He also will sometimes do a neck roll…I think to also crack his neck. I asked him today and he said he had to do it to feel comfortable. So, I am so incredibly frustrated because I have had two experts tell me this is not TS, this site seems to indicate that it is (I know you are not diagnosing, but the guidance and advice infers such…and I trust what you all say because you are living it also). Chemar, you asked earlier what I was so afraid of if, indeed, it is TS. Well, EVERYTHING I read online with kids and people with Tourettes is that they have a a way lower quality of life for the kid and the parent. I know you have an exception with your son, but either I’m googling the wrong thing or the people who are living “normal” lives just aren’t sharing their experiences. We are taking the vitamins, we have changed the diet, cut back screen time, magnesium baths, etc., we are pushing full and positive experiences, and offering an abundance of love…bit I still hurt like . Chemar, you also mentioned that thongs, of course, could be worse…my so could have a terminal disease. I, of course respect what you saying and certainly understand the perspective, but it is a hard pill to swallow to hear that the only thing worse than your child having TS is that your child could have a terminal disease. I mean no disrespect. I am just hurting and I am scared. Thanks all for listening and continuing to offer feedback.
  10. Hi, Silver77...thanks for the check-in. I actually went to my GP and got on some anti-anxiety medication, so I hope this will help with my obsessive negative thoughts. We also leave for vacation which I was way concerned about as I don't want to spend my whole day staring at my son (he is 6) looking for tics. I constantly go through this battle of overreacting to hoping that the things I'm seeing are benign and transient. He currently has two tics which are not very noticeable: gentle head shake...I actually think he might be doing this because of the sound--either of popping the neck or the crepitus...it's hard to tell...then is this truly a uncontrollable tic or just a habit? He also has this ongoing cough which has also become very minimal. He tested allergy for dust mites. We removed all pillows and old rugs and old couches...bought new leather couches, and have cleaned the house and gotten rid of possible dust holders as much as possible. We also bought new latex pillows for his room and all the dust mite covers...the are on the way. The pediatrician also said it might be the beginning of a hay fever allergy and we will begin an allergy medicine protocol for 30 days. We'll see. We have more EEG testing and more allergy testing (scratch versus blood) coming but not until September because I live in Belgium and most things shut down for the summer. 😕 We leave for vacation in a few days. A wonderful trip we've had planned for months...a dude ranch in Croatia. We have all been really looking forward to it. We'll drive and stay in some German castles on the way. We will then drive up to Hungary to visit his grandparents (first time since COVID hit). I was/am hoping that this will be a wonderful experience; however, I am also terrified that I will be consumed with watching for tics. I think, in the least that it will be good for all of us to get out of the house and go and have fun...I just pray I can take my mind off of it for a time. My wife (we are in a gay marriage--I am American and she is Hungarian) is way more concerned about how I will handle the trip versus how our son will handle the trip. I am trying really hard to stabilize myself, but it is a daily struggle. I'm hoping the medication will help. On top of all the worry, I feel like a weak parent. I feel like I am not fully present for my son which just adds a layer of guilt to the whole mess. Chemar mentioned how things could be worse...he is not in a terminal ill ward (which of course, I agree); however, the thought of my son having to struggle and deal with possible negativity is almost more than I can bear. Anyhow, thanks again for your communication. Please send tips for vacation relaxation during these next few weeks...I think we could both use some good coping skills! 🙂. Where are you spending your vacation?
  11. Ok, I'm struggling big time again. All I'm doing is obsessively googling information on Tourettes. I'm having a hard time being present for my boy because I watch constantly looking for other tics. My wife is very bothered with me and keeps telling me to get out of the house and go for a walk, but I can't. I've lost 12 pounds, and I'm exhausted. My wife things I am making to big a deal...she doesn't see the tics like I do. She thinks I am overreacting especially since our pediatrician said it is not TS. I do have a psychology appt. tomorrow because I really do feel like I'm going mad. I just don't know how to handle all of this. I so desperately want to believe what the pediatrician said, but I have read too much on the Internet to know that they typically will offer a false sense of security. I'm just so scared. If you read this...thanks for listening. This is the place I turn when feeling the most overwhelmed.
  12. Hi, Silver77 This is really hard, isn't it. My parter is also much more relaxed...I can't tell if it is denial or she really is ok...maybe for now since nothing has been diagnosed. I went to the Pediatrician yesterday, and she was adamant that it was not Tourettes; although, I am not convinced. She says that she feels there are two different issues happening. Couch--she thinks this is allergies because she saw some drainage in his ears and throat and a little swelling in glands. Two--the neck twitch/roll she thinks might be a nervous twitch. She did set up to have the allergies tested...I had to push for her to include food allergies (she said kids at 6 haven't developed food allergies yet). We do blood test today for allergies. We will also be doing an EEG to rule out epilepsy. After that we will meet with a neurologist. She was so confident that it was not Tourettes that I must admit, I did feel better, but I just don't know. With all I've been reading, he has the signs. Anyhow, she said if it is a nervous twitch that she would send us to a psychiatrist for him to talk with who will begin doing some CBI therapy. Wow. I was happy that she was already looking ahead for solutions...she didn't just tell us to forget it and carry on. We have gone gluten-free, sugar-free (for the most part), and I give him mag, vit b, fish oil, and multi. We have also been doing mag foot baths and baths. I've limited tv to an hour/day. It's hard to tell if anything is having an affect on anything as now I am hyperaware of every move he makes. I feel that we probably have a long road ahead of us. We go on vacation in just over a week, and I am terrified that this might bring on a whole new series of tics, and I just came out of such a dark depression over the last couple of days, it will be hard if anything progresses...and to not be home. Anyhow, thanks for sharing your story. Never in a million years did I think I would be dealing with something like this...I've been worried about so many other things...didn't think about Tourettes. It's hard. Thanks for listening...
  13. Thank you for the welcome Chemar. I have read through this site and know that you have much experience and wisdom for this. I see that this site was once very active; however, it seems to not be so now? I see that many people have read my post, but no one has commented? Is it because there are just not many people here anymore? I could really use some help, so if there is anyone out there willing to mentor me a bit, I would greatly appreciate it. I'm really struggling. I have read through a million websites that basically say the same thing: if it is motor and vocal, it's TS. My son has motor and vocal, so I guess we're talking TS here? I have started a lot of the regimes on the site, but I really don't know what I am doing. It's way better to talk to people who have experience to just read a website, so if anyone out there can help walk me through this, I would be forever thankful.
  14. Hello, My 6 year old son has recently developed a motor tic that has made me concerned, and I found this site after googling like crazy. Over the past year, he did have a sniffle for a few months...seems to have diminished. And some shoulder shrugs...not frequently...maybe every couple weeks? However, about three months ago, he developed chronic cough after a cold. Then a few weeks ago, he started to say his neck hurt and he began to do this tilting the head back...like he was relieving soreness. We thought it was just sore...however, the head tilt did continue. Then last Saturday, he came home after a day out and had this big neck roll, head twitch happening while watching tv. Along with the cough. I knew something was different. The next day, I saw some head shaking...low key...back and fourth. That night, the head twitching was quite bad while he was watching tv. With the cough. We have an appt. to our pediatrist on Friday. I initiated some changes in routine...earlier bed time, Epsom salt bath. And began to change input of sugar. Yesterday, we saw minimal head shake, neck roll in the morning. He did have a little bit of neck roll after school. I gave him popcorn for a snack...and he coughed a lot after that. However, we saw no head roll or head shake last night while watching tv and during our night routine and putting him to sleep. This morning there was just one neck roll that I saw. I tried to give him some new vitamins...B...and fish oil...in capsule form...that didn't work...will get drops. He said, "I know this is for my neck and cough." I said, "Why do you think that?" He said, "Because I do that sometimes." Other than that we do not mention anything to him. Where am I? Where do I go? What do I do? What is happening?
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