rossina Posted July 7, 2008 Report Share Posted July 7, 2008 Hi all- I posted yesterday about my son blinking since seeing fireworks on 4th of July. He has been blinking ever since and I now officially feel my anxiety at an all time high!!! This winter I dedicated my life to helping find answers for my son- allergy tests, strep tests, food changes, nystatin, weekly NAET treatments(dragging my 4 kids 2 hours each week), probiotics, digestive enzymes every time he eats, bonnie's, nothing artificial, no sugar. We have modified our life more ways than I can even articulate- no movies, tv, flashing video games, etc,etc,etc, as I am sure you can all relate!! NOw he is doing this hard blink , chewing his fingers and I feel like SCREAMING!!!!!!!!! AAAAAGGGGGHHHHHH!!! Could you hear that? ha ha He was doing GREAT-And now, because I wasn't even thinking fireworks would be a trigger (he started ticcing last August) we are right back at square one & I have to watch my son do this again. I think I need help, as I actually did the unthinkable and raised my voice at him to stop blinking as today we have done a nap, herbs & an epsom salts bath. I hate the way I feel inside right now & I feel like I am failing him miserably!! It feels like no matter what I do it isn't enough... I really thought we were in a good place & just like that he is blinking harder than ever. In the past triggers have sent him into 3 days spells- so perhaps he will come out of this? Does anyone have ANY hope at all to offer a pretty hopeless mom right now(which by the way is not the norm for me) Thanks you guys, Jeanne Link to comment Share on other sites More sharing options...
Chemar Posted July 7, 2008 Report Share Posted July 7, 2008 ((((Jeanne))))) so sorry to hear it has intensified. it does sound like the flashing of the fireworks has been a trigger. hopefully he will stabilize quickly. Have you done some searches here on Claire's past posts on photosensitive induced tics? she has a lot of good info best you can do is to take a deep breath and remember "this too shall pass" and try to keep the stress level down for all of you, as the more you focus on the tics likely the worse it gets. Your lil guy is likely very confused by it all too. just keep doing the stuff that has helped in the past and hopefully this waxing phase will be over quickly Link to comment Share on other sites More sharing options...
momof4boys Posted July 7, 2008 Report Share Posted July 7, 2008 ((((((Jeanne)))))) I'm brand new here...I'm a mom of 4 boys and I can totally relate to how your anxiety kicks in when you watch your son with his eye tic. I am going thru the same thing with my almost 5 year old. We're awaiting blood results which should be available tomorrow. Hang in there. I have found a lot of great ideas and encouragement reading thru the different threads. It is so hard to watch our kids go thru this when we can't make it stop for them. Keep us posted and let us know how he is doing!!! Link to comment Share on other sites More sharing options...
lurker Posted July 7, 2008 Report Share Posted July 7, 2008 Jeanne, Have you ever considered airborne allergens? I only mention this because it looks like this may be his time of year to wax (you mentioned it started last August.) There is a website called "pollen.com" or something like that where you can see national maps of certain pollens and other allergens. You can even contrast these same patterns to previous years. You may want to see what is active in mid to late summer in your region. Having said that, its still probably the darn light flashes. My kid is light sensitive, and he has had blinking spells after lake activities, days at the beach, movie theaters, and exceeding his tv quota. Mom of 4 boys, What tests did you have done? Link to comment Share on other sites More sharing options...
MARYANN Posted July 7, 2008 Report Share Posted July 7, 2008 Hi, I can relate , especially when it goes away and everything fine and something sets it off. I think it's more upsetting for the parents, My daughter always knows when im upset about the tics or im looking at her. It's not the tic that gets her upset it's me. Then I feel guilty for making her upset. I understand what your going threw and like Chemar said it will pass. Try to take it easy. Easier said then done, I 'm going to have to take my own advise, My daughter has been away since Tuesday and coming back this Friday (11Days). I have not asked yet how she is doing tic wise. If I do I know I will upset her. We parents are learning , do not be to hard on your self! I'm talking to both of us, you know. Hope all is well real soon and have a good night! Link to comment Share on other sites More sharing options...
momof4boys Posted July 7, 2008 Report Share Posted July 7, 2008 As far as blood test, OMG we did a whole bunch. Our pediatrician was wonderful. I posted a thread about 2 weeks ago asking what type of bloodwork to run and some of the moms gave me good ideas. They took 5 viles and honestly, I can't even rememer what half of them were. Of course there was the cbc/diff and metabolic panels. They did the strep test for PANDAS. He ran the lyme and EBV test. Something called an ASO? My son also has mastocytomas on his skin (mast cells) and they are checking for mastocytosis in the blood... I think the test was serum tryptase. I should get the full report tomorrow and I always request copies for my personal file at home so I'll be able to read thru them and post more of the tests if anyone wants to know. We are scheduled for an MRI on August 5th and then another visit to the neurologist on August 11th. ~Jody~ BTW my boys are: Danny (almost 6) Kenny (almost 5) the kid with tics Johnny (2 1/2) Tommy (10 weeks) Link to comment Share on other sites More sharing options...
patty Posted July 7, 2008 Report Share Posted July 7, 2008 rossina, So sorry that your son's waxing. Since my son started his sudden onset of tics a little over 2 yrs ago, i can tell you that it does get better. My son is practically tic free with very slight & infrequent tics that only i can tell. And don't be so hard on yourself about your frustration. I have been there and felt exactly you do. Just keep doing what has been helpful in the past and this too will pass soon. You posted that you are doing NAET with your son. We have done NAET for about 2 years and now switched to Bioset this summer. NAET has been helpful for my son's asthma, nasal allergies and tics. Other modalities i found helpful is accupuncture, chiropractic and craniosacral therapy. We are also seeing a ND who has been very helpful as well. We have your son been treated via NAET? Do you find it helpful to his tics? Pat Link to comment Share on other sites More sharing options...
faith Posted July 7, 2008 Report Share Posted July 7, 2008 Jeanne, please let us know if the blinking subsides this week. I'd be interested to know if the fireworks did indeed have something to do with it. We have had a good period last couple of weeks and I noticed some eye twitching again yesterday, but we only saw some fireworks in the sky above the houses for about 10-15 minutes. I don't think I noticed anything right there, but did not really think to look. How long did he look at the fireworks? How long do you all think it takes to come down from this type of trigger? Faith Link to comment Share on other sites More sharing options...
rossina Posted July 9, 2008 Author Report Share Posted July 9, 2008 Just thought I would give you an update on my son, who started blinking like crazy & chewing his fingers after watching 4th of July fireworks. Exactly three days to the minute he stopped!! It was amazing!! I was going crazy(thanks for all of your support!) so I am feeling REALLY,REALLY thankful to have him back to"normal". He still does some mild tongue chewing, but that does not drive me up a wall like the hard blinking. I will say during the midst of all of this I started him on L-Carnitine. I know it makes some kids edgy, but I thought I would try it & see- hard to say if he just came out of it or if the L-carnitine helped. We are doing so much, we may never know exactly what helps him & why, but feeling better that he is 95% improved from what we went through this winter. Faith- to answer your questions- he watched for 20 minutes & it was actually two sets on both sides of us, so this back & forth movement may ahve something to do with it, on top of the lights, dark sky & noise. Guess I know what we WON"T be doing next 4th!! Wishing you all peace & health, Jeanne Link to comment Share on other sites More sharing options...
Chemar Posted July 9, 2008 Report Share Posted July 9, 2008 that's great Rossina and yes, I would not be surprised if the L carnitine is what has helped! it helped my son with blinking and with vocals. He cant seem to tolerate it anymore (now 18yo) but back then around 11-13yo we used it whenever his eye or vocal tics waxed Link to comment Share on other sites More sharing options...
rossina Posted July 9, 2008 Author Report Share Posted July 9, 2008 great! is it something you gave everyday or just "as needed"? thanks for your support , chemar!!! jeanne Link to comment Share on other sites More sharing options...
Chemar Posted July 10, 2008 Report Share Posted July 10, 2008 he had it every day for a number of months and then after that we would give it for about 2 weeks whenever needed. He went through a period of very mild tics so hadnt used it in over a year. He had some waxing after we were hit by the hurricanes in 2004(no electric for a week, very hot, lots of stress as house damaged etc) and we tried the l-carnitine again and it made him feel edgy and weird so he refused to ever have it again. could well have been a hyper reaction to it during a stressful time for all I know however, when he needed it before it sure helped VERY MUCH!!! Link to comment Share on other sites More sharing options...
faith Posted July 10, 2008 Report Share Posted July 10, 2008 Jeanne, just to clarify, do you mean you gave him the carnitine a day or two after the 4th of July fireworks, or had been giving it for a little while before that happened? Thanks Faith Link to comment Share on other sites More sharing options...
rossina Posted July 10, 2008 Author Report Share Posted July 10, 2008 hi faith- i gave it to him july 6th, in the midst of his worse blinking spell ever. he stopped on the 7th... jeanne Link to comment Share on other sites More sharing options...
bmom Posted July 10, 2008 Report Share Posted July 10, 2008 Chemar, I know you have posted this many times, but can you tell me exactly what type of L-carnitine it is-even brand, that you used to use? Link to comment Share on other sites More sharing options...
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