ilovedogs

ARRGGHH! My son has just started ticcing like crazy. We are traveling for a tennis tournament for him and he just started adding some new tics. He was already doing some eye winking and a breathing tic where he breathes out(kinda like he's giving a quick laugh exhalation and it makes his body jerk a bit). But, now he's added in eyebrow raising, eye movements, and a bit of a facial grimace. I'm wondering if it's the hotel room or something? We travel all the time and he's never increased ticcing like this before. The only supplements I have with me are his glycine and PS100(phosphaditylserene) and his Kavinace(from Neuroscience) for his OCD. I guess I could go out and get some B6 or magnesium but I've never seen quick results from either one of these supps. I just hope the tics don't get in the way of his tournament tennis playing! Oh, and he's sniffing his fingers like crazy. He's always done this on and off but it's really increased since we got here! OI! I can't wait to find out how everyone does with Dr Simms. If some of you have success that lasts, I will make the trip to MD and find a doc/dentist here who will work with us and with Dr Simms! Bonnie

This is what I think causes my son's headaches. He has been sneezing and congested and has been complaining of a mild headache. In other words, it's a bit bothersome but not enough to make him want to take pain meds for it. I need to take him back for NEAT and get him back on the quercetin(which I think helped with his allergies a bit). I also think he gets sun headaches and headaches possibly from dehydration. He played 4 hours of tennis yesterday in temps over 100 degrees and said a headache started last night. As long as he's not whining about it, I don't treat it except with having him drink lots of water! B

Let us know how it goes, Faith. Since I live in AZ, I'm waiting to see what everyone else finds out before I go calling this doctor myself! Also, my ds already has permanent space maintainers in on his upper teeth and runs along the arch of his mouth so I doubt we'd be able to use Dr Simms device anyway. If I see a major increase in tics, I know I'll be looking further into this dental device. Does anyone know if Dr Simms will work with an ortho or dentist long distance with this device? If my son would need adjustments done or braces eventually we definitely couldn't keep traveling to MD. Of course, my in laws would be ecstatic b/c they're in Baltimore and my mother would try to convince me to move in with her in Virginia!! LOL!

Also, I was doing a lot of throat clearing and had a hoarse voice for a few months and my doctor suggested it was reflux. Sure enough, once I treated the reflux my raspy voice and throat clearing went away. Just wanted to throw another suggestion at you. My son also had a throat clearing tic but it was only during allergy season and then seemed to clear up.

Yep, I don't stop hoping either! We still don't have a diagnosis either. You know, did you all know that Dan Ackroyd was diagnosed with Tourettes when he was a child. He said that the tics stopped when he was around 14 but that his Aspie like behavior and obsessions are still with him today. I have another friend in CO who's son had tics from age 8-14 and she said they just stopped when he hit a growth spurt. These stories are the ones that give me hope, but I also have to remind myself that they may never go away! My mom plays accordion with a man who has pretty major tics as an adult. He doesn't tic while he's playing but when he's waiting for his section to play in the orchestra, he will tic like crazy. He's a very successful engineer and has 5 grandchildren. So, it's people like this that I try to think of when I get discouraged b/c tics truly aren't life threatening. They're an inconvenience and they may be irritating and annoying but they aren't the worst thing that can happen, as Cheri pointed out! Thank you, Cheri, for your post from Lara. It was a nice reminder! B

Faith, this is why I posted this thread. I wanted those who are frustrated to know that they are not alone. You know, I have tried all different diet modifications with him over the past 2 years and nothing, good or bad has made an impact on his tics. I have always stayed away from MSG, though, even before the tics and stuff started. I have been totally lax about his diet these past few months and I've seen NO waxing or increase in tics. But, just the past few days he's been doing a new tic where he blows air out his nose, kinda like a backwards sniff. He also just lost a tooth the day it started, so again I'm back to thinking that tooth stuff definitely is one of our triggers but that doesn't explain why he tics everyday anyway! We did the NEAT, too, last summer. I think it helped b/c his allergies this spring were far less severe than the past 5 years, but it did nothing for the tics. I didn't have to give him allergy meds to get him sleeping through the night, etc. And, I know that the intensity of his tics increases when he's being reprimanded or when he's taking a test, or when he's sick. So, those are the things that I KNOW. Everything else is a mystery! Bonnie

I don't know about some of you, but many times I feel like just when I find an answer or a 'lead' to what's going on to cause the tics, etc. I end up at a dead end or something changes to make me rethink my strategy. For the longest time I would feel sorry for us b/c of the neurological issues we were dealing with and wonder why can't my kid be like all the normal ones out there? I swear I didn't see any kids with tics or TS. Our naturopath keeps speaking to me about the tics implying that they are more OCD tics than they are TS. To me, it doesn't really matter what it is, call it what you want....I just want to find the trigger, try my best to control it, and hopefully my son will progress through puberty smoothly. Adolescence is hard enough, tics I'm sure make it challenging to some degree. Anyway, while I've been sitting here feeling sorry for myself(yes, myself...not my child...he's fine) I finally saw 2 boys with tics this past week while out and about shopping. One boy at the mall had motor tics and a loud vocal(honestly, I've never witnessed a true vocal like that myself) and the other boy had a shoulder shrug and then he'd look up at the ceiling and roll his eyes upward(this was at Whole Foods). So, what I've come to realize is that 1. I'm not alone(I know, I know...you're all on here, but you know what I mean) and 2. I may never find out what really triggers his tics and I need to be OK with that. There's probably a 3 and a 4, but I'm too tired to remember them, LOL! I guess what I'm getting at here is that I need to just accept the fact that I'm on a roller coaster ride or a never ending merry go round, and get over it. Many times I feel like I've failed him b/c the magnesium never seemed to help or b/c the 5-HTP sent him into major OCD waxing that was awful, etc. I know we all wish we had a magic pill that we could give our kids but it just doesn't work like that, does it? So, I guess I just want to encourage you all to keep searching for the right 'formula/s' for your child and to not give up. I know I need to believe that all my work, research, diet restrictions, doctor appointments, etc won't be in vain! I hope you feel the same way, too!

The National Archives is a great one to check out, too. They have the original copies of the Declaration of Independence, the Constitution, and the Bill of Rights.

My son was born in early November and he reacted to my pumpkin pie eating habit!! So, yes, make sure you are keeping a food journal of what you eat and how he seems to be acting/reacting.

Thanks, Michael....I did buy the Barleans flax oil that tasted like cinnamon but I kept forgetting to give it to him. I'll have to look into the Spectrum oils, too! B

Just wanted to ask about your products; do they have fish oils or are they plant based oils? My son seems to react to fish oils but I think the DHA and EPA oils are essential and I just can't find the right product for him. Thanks, Bonnie

This is all very interesting to me and I'm looking forward to hearing what everyone has to say after they speak to Dr Sims. Looking back on my son's tics I know that they started shortly after he had an orthodontic appliance put in his mouth(it's still there). He's had it in for 2 years now. All of his tics are focused around the jaw, muscles of the face and neck. His tics definitely increase when he is losing teeth. He also complains of jaw pain periodically especially around the ear and I'm guessing he does have TMJ since both my mom and I have it on and off through the years. So many questions! If any of you have success, I will be bringing this 'theory' to the attention of our orthodontist and to our naturopath. Good luck to everyone who's taking the time to see this doctor! Bonnie

Obviously, I have no experience with this but I wanted to come on and say, "OH my gosh, he's driving????" How did that happen? BTW: we are probably coming out in September and we'd love to have you guys out to my mom's farm. I'll let you know the dates as we get closer! Bonnie

I'm sorry that things are being set back for you! I know that teeth things actually set my son off with more jaw/neck tics so that's a trigger, too. Chemar is right. Add some magnesium and wait for things to stabilize. I know that I want to get carried away with supplementation when things get out of whack but I have to remind myself that it won't help me in the long run. Praying for you and for your dd, for her tics to subside so you can get back on track! Bonnie

I'm still trying to figure out what triggers my son's tics. He hasn't had a tic free day in 1 1/2 years but I do know what exacerbates them. Stress, allergies, and anything with his teeth or jaw! Anyway, have you thought about environmental allergies or the chlorine itself? I keep my chlorine as low as I can in our pool but if it's higher than 2 PPM I see more tics. Flintstones vitamins have additives that I'd stay away from so you might want to find a more natural vitamin supplement for him. Try www.iherb.com for some kids vitamin/mineral supps. Good luck! Bonnie

You know, what it came down to was him being too hard on himself. He was crying b/c he was totally messing up his forehand over and over again and the coach made him run a lap b/c he had too many miss hits, which all the kids were put under this warning(not just him). It could have been from his loss in the final, but we asked him and he said no. He just said he was mad at himself that he couldn't fix his forehand. He has so much passion but he also has emotional issues and anxiety along with the tics. So, when you combine that altogether you get quite a mess sometimes! So, did you enjoy playing tennis all those years? Do you still play?

My son is a high achiever in sports. He could care less about school. I'm trying to figure out if his crying and emotions about his sports performance are related to his anxiety and low stress threshold or if it's just his age. For those who don't know, my son has GAD(generalized anxiety disorder, OCD tendencies, and tics...mostly facial). Anyway, he just played in a tennis tournament this weekend and made it to the finals in the boys singles, he won the boys doubles with his friend and I didn't see him stressed out at all. Not even a tear when he lost the final!!!! So, we go to tennis clinic this AM and he comes home and cries for almost 2 hours afterwards b/c he thinks he should have played better and that he played people who were 'not as good as him(in his opinion of course)' and so therefore, he should have been playing better. He was critical of his form and was just ready to quit the sport...OVER CLINIC???? I just don't get it. Is this an age thing, a boy thing, or a combination of many things? I'm used to him getting weepy over stuff like his fear of germs/disease or his separation anxiety, etc but this sports stuff is very new to me. I grew up with all girls so I don't understand boys at all!!! Bonnie

Hi Myrose, There was a lady here in our homeschool group who had scleroderma. I do not know which type, though. But, I know she did some experimental treatment in Illinois that wasn't covered by insurance and she's doing very well now. She had the procedure done almost 1 1/2 years ago. If you'd like to PM me I can try to reach her via email and see if she knows of any support groups. Bonnie

OK, Myrose, I had to laugh! My dh and I constantly talk about leaving the country. We love America but we feel this country's infrastructure is falling apart and that we are keeping the American people unhealthy b/c the FDA refuses to consider a lot of the alternative treatments for diseases and disorders that many European nations have been using successfully for years. My dream is to move to Italy but my dh wants to move to Germany! I doubt it will ever happen, but it's a dream! On the Vitamin D thing. My ds gets outside daily as we live in Arizona and the sun shines here about 300 days a year. I only put sunscreen on him if it's going to be above 90 and if it's at the peak time of day for UV. So, should we think about supplementing with Vitamin D? I am actually thinking of doing it for myself but that's b/c I'm approaching menopause and I have a lot of melanin in my skin, I hardly ever burn. Is natural sunlight enough for children? B

Mostly health food stores sell it and places like Trader Joes. I buy Peach b/c it's the only one the rest of the family will eat! It basically is like liquid yogurt. You can blend it into a homemade smoothie if you don't like the taste. I don't think it will interfere with supplements at all. Also, on the Kombucha thing....I love Kombucha but it's expensive but does have good bacteria for the gut. I've thought about buying my own cultures and making it at home along with making my own yogurt. Since I've been on antibiotics for 2 weeks I've been drinking Kefir and Kombucha and I also use miso. Miso is also a fermented product that has good cultures for the gut. It is made from soy, though, so if you can't have soy that it wouldn't be beneficial. I make miso soup every time I feel a cold coming on or I add it to my homemade chicken noodle soup. It gives it a nice Oriental flavor. B

My naturopath said to try goats milk yogurt instead of cow's milk. Have you tried to keep his diet really simple? Maybe just switch to rice pastas, rice milk, and keep him off of veggies and fruit b/c they really can help feed the 'runs'. I have IBS so I know that when my GI system is going to be stressed that I have to eat small bites throughout the day and I beef up my defenses with applesauce, bananas, kefir smoothies(which I drink just a little bit a day b/c it has sugar), etc. I stay away from ALL sugar. Actually, I've lost 8 pounds since starting the antibiotics b/c of diet changes and b/c they suppress my appetite, too! B

I was just going to add that I have been trying to prevent getting this bacteria overgrowth in my gut b/c I've been on broad spectrum antibiotics for 2 weeks. Basically, I've been taking Primal Defense(a probiotic) and eating lots of kefir and yogurt. I'm also staying away from complex carbohydrates like fruits and veggies. I'm eating very plain foods, bananas, applesauce, etc hoping to avoid the bacterial and yeast overgrowth that can occur when on antibiotics. So, if you are concerned I'd probably just change the diet a bit and up the probiotics. B

Well, this neuro is NOT covered by any insurance and he costs $4000 to do the tests and they would do a full one day workup on him, etc. So, we're in talks with the naturopath to find someone else to do the EEG. My dh pretty much said no to the 4K tests b/c he doesn't want all that, we just want and EEG and will let the naturopath treat him from there. We won't do meds unless it was a last resort, just like for the tics and anxiety.

Carolyn, the first place I called was Dr Proefrock's office. I didn't want to get into a huge to-do with the pediatrician. Dr P. was very calm about the whole thing and he also noticed that Grif has a problem with his left eye pupil not dilating properly(or something like that) which is interesting. He said it's unrelated to the seizure, though. Apparently, he's treated epileptic patients over the years and I was very comfortable with him working with Grif on this. He referred us to a Scottsdale neurologist for an EEG. Dr P. is really interested to see if the tics are related to the seizure in any way. Maybe this neurologist will have some answers for us, as well. Yes, parenting can be very scary sometimes!!! thanks, Bonnie

From what I read, Melanie, many docs treat the first seizure as a one time event. It's when there are repeat occurrences that further action is necessary and warrants medication, etc. We saw our naturopath (who has had epileptic patients before) and he referred us to a highly respected neurologist for the EEG. After researching this neuro. I found out that he's also a psychologist who is well known for treating kids with dyslexia and learning disabilities and that he specializes in children and neurology. So, I'll be calling this AM to make the appointment. Our doctor was not too concerned about ds's issue b/c he checked for other neurological 'problems/signs of a problem' in the office and everything was status quo, so to speak!