Vicki Posted August 22, 2014 Report Share Posted August 22, 2014 Hi, my name is Vicki and my nine year old son was diagnosed with ts the beginning of 1st grade. He started overnight with this. One day he was a smily, happy little boy to the next day full of fear that I was going to die or someone was going to break in the house and kill the whole family. He continued on with these fears and then one night he went to sleep and woke up the next morning with uncontrollable movements of the head, arms and neck. Anywhere from flapping his arms to snapping his neck. I had no clue what was going on and it scared me a lot. Made an appt with ped and then from there to neuro. The neuro diagnosed him with ts after a full exam of questions, etc. I have cut gluten out of his diet after meeting with a nutrionist. His tics decreased dramatically for a while. I am at a loss of what to think...some docs say its neuro and some say its immune. So believe its dental even. We are true believers that God is in this all, but my heart breaks for my little boy who has sooo much fear and embarassed by his tics. If anyone has any feedback for me on what I should do. I just feel like there is something more to this then just medicating him, which we are not right now. Thanks!! Link to comment Share on other sites More sharing options...
Pilbara Posted August 23, 2014 Report Share Posted August 23, 2014 Vicki, I know it's heart breaking to see our kids go through this. I'm more comfortable with my son's (also 9) tics now than in the beginning. I believe my son's tics are triggered by environmental factors, so we aim for a toxic free environment as possible. This also includes food as well as chemical exposure. You may like to go over to the PANDA thread's and have a read there as well, because I feel it may have some relevance for you with the sudden onset. You need to explore all possible triggers and learn about all possible causes for tics. There is so much information in the threads on this forum and you will find that a lot of us have experienced improvements through using natural methods. Definitely read Sheila Rogers book before you medicate, because it will certainly give you hope on what can be done if your willing to spend the time looking. I've put my journey into my profile if you want to see what I do. My son still has tics, but they are very minimal now and have no impact on his life. I also try and focus on the positive's of what TS has brought to our lives. We certainly live a healthier and cleaner lifestyle. My son struggles academically, but excels in sports, then I read articles like this one http://abcnews.go.com/Health/tourette-syndrome-make-superior-athlete/story?id=24977715 and I think there is always an upside. Your in the right place to start your journey. There is a lot to learn and a lot to explore, but it is so worth it in the end. Improvement really is possible. Good luck Link to comment Share on other sites More sharing options...
Chemar Posted August 23, 2014 Report Share Posted August 23, 2014 (edited) Hi Vicki I do agree you should also post on our PANDAS/PANS forum as whenever there is that dramatic and sudden onset, and especially with the fear/phobia or OCD aspect, an infection connection should be investigated ASAP http://latitudes.org/forums/index.php?showforum=17 Here is additional info on it http://www.pandasnetwork.org Just an FYI that sadly many neuros and other conventional doctors give a TS diagnosis before fully investigating the other possible causes. In many cases they are either also ignorant or obstinate about the potential for other things to cause these symptoms. Our Helpful Threads link may also be beneficial http://latitudes.org/forums/index.php?showtopic=2459 Edited August 23, 2014 by chemar corrected spelling error Link to comment Share on other sites More sharing options...
Vicki Posted August 23, 2014 Author Report Share Posted August 23, 2014 Vicki, I know it's heart breaking to see our kids go through this. I'm more comfortable with my son's (also 9) tics now than in the beginning. I believe my son's tics are triggered by environmental factors, so we aim for a toxic free environment as possible. This also includes food as well as chemical exposure. You may like to go over to the PANDA thread's and have a read there as well, because I feel it may have some relevance for you with the sudden onset. You need to explore all possible triggers and learn about all possible causes for tics. There is so much information in the threads on this forum and you will find that a lot of us have experienced improvements through using natural methods. Definitely read Sheila Rogers book before you medicate, because it will certainly give you hope on what can be done if your willing to spend the time looking. I've put my journey into my profile if you want to see what I do. My son still has tics, but they are very minimal now and have no impact on his life. I also try and focus on the positive's of what TS has brought to our lives. We certainly live a healthier and cleaner lifestyle. My son struggles academically, but excels in sports, then I read articles like this one http://abcnews.go.com/Health/tourette-syndrome-make-superior-athlete/story?id=24977715 and I think there is always an upside. Your in the right place to start your journey. There is a lot to learn and a lot to explore, but it is so worth it in the end. Improvement really is possible. Good luck Thank you for replying back! I am going to order her book. It really stuck out to me when I first clicked on this website. I was reading forums on the Pandas site and thought it was very interesting to hear all that. It crossed my mind several times thinking this may be illness related. My son got strep throat in K and before 1st grade started with ts. His immune system is not good. He gets impetigo and herpes zolster near his eye and in his nose a lot. He has allergies and asthma as well. The neuro swears that gluten has nothing to do with ts, but I experimented with this. I took him off gluten 2 years ago and his tics decreased. I put him back on after 6 months and he started right back up again. So, I took him off and he's staying off regardless of what the neuro says. His ped just wants to drug him and that's not going to happen. They try to tell me it's sleep related so give him melatonin. It's so confusing to hear all this stuff when deep down inside I know something is wrong. Adult fears and anxiety should not be common of a nine year old. Thank you so much for your feedback! I need a support group. Around here it's uncommon and I feel lost. Link to comment Share on other sites More sharing options...
Vicki Posted August 23, 2014 Author Report Share Posted August 23, 2014 Hi Vicki I do agree you should also post on our PANDAS/PANS forum as whenever there is that dramatic and sudden onset, and especially with the fear/phobia or OCD aspect, an infection connection should be investigated ASAP http://latitudes.org/forums/index.php?showforum=17 Here is additional info on it http://www.pandasnetwork.org Just an FYI that sadly many neuros and other conventional doctors give a TS diagnosis before fully investigating the other possible causes. In many cases they are either also ignorant or obstinate about the potential for other things to cause these symptoms. Our Helpful Threads link may also be beneficial http://latitudes.org/forums/index.php?showtopic=2459 I will post on the Pandas page. Thanks! I don't know where to turn right now. He had strep when he was in K and in 1st grade started with ts. His neuro believes its all neuro related and just threw out the idea of food allergies being a trigger, even after he said "wow, Vincent seems to be improving this time, what's different?" I responded, "I cut gluten out." He says, "gluten has nothing to do with ts, so he can eat that again." WHAT?? Even after making a comment of him improving he still replies back with that. I'm not taking his advice because I know my son gets so much worse after eating gluten, even throwing it all up as well. The "fill in" ped I took him to yesterday, who has never seen my son before, acted like she knew his whole history just by skimming down his chart. I made him an appt to rule out any sicknesses he may have because its hard discerning his fears of everything hurting to him really hurting. He has a lot of fears right now. He thinks everything on his body is dying. He is constantly checking himself. She did a full exam and told him he's healthy and he relief yesterday til this morning its all back again. She told me to give him melatonin because its probably sleep related because he is checking on the whole family several times before bed to make sure we are ok. Then I talked to her about strep and she says, "looking back on the chart I see he only had it one time." Isn't that all it takes? So, right now, I'm exhausted.... what is my next step? He is on medical assistance and we can't afford to travel to top docs. Link to comment Share on other sites More sharing options...
Chemar Posted August 23, 2014 Report Share Posted August 23, 2014 So sorry to hear that the neuro is not giving you totally correct info Vicki. Food allergies and other allergies and sensitivities most definitely can be triggers for tics, with or without underlying TS and yes, one strep attack could trigger a PANDAS situation and with the herpes and impetigo etc PANS is definitely worth investigating. I sure do understand the financial limitations and perhaps the members on the PANDAS forum might know of the best way to go about having correct testing done to at least be sure about whether this may be PANS Link to comment Share on other sites More sharing options...
Vicki Posted September 3, 2014 Author Report Share Posted September 3, 2014 His strep culture came back positive. We meet with the doctor tomorrow morning to set up an action plan. They are still waiting for more blood work to come back. They are leaning towards PANDAS with him. Link to comment Share on other sites More sharing options...
Pilbara Posted September 5, 2014 Report Share Posted September 5, 2014 That's excellent Vicki, it's wonderful to be getting some answers. Link to comment Share on other sites More sharing options...
Chemar Posted September 5, 2014 Report Share Posted September 5, 2014 Hoping your doctor gets him started on most eefective treatments asap Vicki It is a tough diagnosis but at least you know what is happening and can now move forward Link to comment Share on other sites More sharing options...
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