twobit

Hi. My son got vocal and motor tics right as he turned 4. They were grunting and running fingers down then in his nose. No meds no nothing except for a few trips to the doc who said wait and see for a year before they would diagnose. I tried all diet supplements, but since the docs said they most probably are transient, we didnt want to go overboard. After a few weeks they went away. Now he is almost 8 and the vocal tics have never come back, but the motor ones come back a few times every year (2-4). We thought it had something to do with stress, but we also think it may be allergies. Nobody knows. What does seem to happen is that they come and go in about a week and in that time he eats like a horse and is very emotional. You should try the diet and supplements. I hope they work for you. We also do epsom salt baths which help to slow and calm him down. Rob

Hello - reading of probiotics and was wondering if you've ever tried the Garden of Life supplements? Its tough getting my son to eat any vegetables, so this is my avenue. I make a kefir shake with it and I think it has helped him a lot.

Was speaking to my friend about my torn rotator cuff and he recommended this. When I looked on line, I found out that it dealt more with treating blood impurities.

Hello all, Usually go to the TS side of this site, but I am thinking that maybe my son has PANDAS. Almost an exact year ago, my son had abrupt onset of motor (touching face) and vocal tics (grunts) three days after he got off antibiotics for strep. His strep and anti dnase B were all very low when we took him to a pediatrician and neurologist in the week following. After a few weeks his symptoms went away to almost nothing. In fact, I think the only people who may have noticed were his Mom and I because the vocal tics went completely away. He stayed like this for most of the year and we assumed that any transient flare-ups were due to bad diet. Two weeks ago, he started stuttering a bit which had me concerned, then a week ago while on vacation, I took him to an acute care clinic because he was coughing, sneezing and couldnt breath through his nose at night, so he was getting almost no sleep. Doc put him on anti-biotics because his throat was swollen with pustules. No strep test was ordered because it wasnt a hospital. My daughter and I went on it as well. So here are my questions: Most PANDAS kids seem to improve after their kids go on anti-biotics, but mine doesn't. It seems as if only time helps. Of course I haven't tried anything like a steroid burst, IVIG, etc. Have others found that to be the same with their kids? Also - if there is inflammation of the brain causing this, what type of long term damage can each episode cause? Cumulative? I guess my bottom line is that if these remain purely motor tics with no mood swings, OCD, etc, and decrease to almost nothing in a few weeks, I'm wondering how much I should be willing to put my son through to find out the cause? The long term damage question will steer my course. Thanks for any help.

Football, Clonidine didnt do anything for my son either, but we didnt give it much of a chance. Just spaced my son out and turned him into a zombie, so we stopped after one dose. The effects were awful. Who gave you the scrip? Our son got his from the ER doc. I got the feeling it was a knee jerk reaction. She didnt even tell me to go see my regular ped. Just saw his motor and verbal tics which had just started within the past 72 hours and gave us the scrip, then told us that tics usually go away on their own.

My Rose, How's your daughter doing? Last I read she was doing so much better and that was great to see. Who recommended the dry blood analysis and why? Your pediatrician?

Mary - I cant follow what you looked for at the bottom of his neck ... Rob

Mary, I got an intial ATO from my ped within limits and then, when we went to the neurologist, he looked at him, offerred meds and then said he'd wait to see him again in 2 weeks. When we went back, he didnt offer much except ask why we werent giving my son the clondine that the ped wrote for us. I had to ask him for another ATO test to look for trends, AntiDnase B, and while he was drawing blood, I asked him to check magnesium levels. He told me about a week later that everything came back within limits. I dont really have to worry about health care since I am in the military and I guess they can charge the governement for just about anything, so I didnt have to fight for the tests.? Well - that's at least one less worry. Son is starting to repeat the beginning of his sentences. Somtimes it is the first few words, sometimes just the first, and sometimes nothing. Time to really look at cleaning up his diet ...

Great to read posts like yours. Hope you have continued success with it.

Thanks for all of the input. We got Zyrtec from his doc becuause he's stuffed up all of the time, but it doesnt seem to help his nose or the tics. When we all moved to Texas, we all were stuffed up most of the time, so I figured Zyrtec would help, but it didnt. I take Claritine or just Loratadine from Sam's and it helps me a lot, but we havent discussed it for him with his doc yet. His doc has told me that she thinks his tics are a reaction to his allergies and since it has only been 5 months since they started, he is very young, and they are not severe, she told me to wait and see what happens. We came here with 2 dogs and 2 cats and are now down to one of each, and they're both old. I have a feeling that before we move again in about a year, we'll be down to one or none, so that may eliminate some potential causes for allergies, too. Dont want to go with the skin tests yet since he only just turned 4. Also - just got new vitamins for the kids - SOLARAY Children's chewables because I took a good look at the Gummies ones that I had been giving them and I realized they were short on nutrition and long on sugar, as well as other junk. I've convinced my son that the black cherry flavor is like candy and he loves them, but my daughter (9) almost spat hers out, but she'd already chewed it and it wasnt going anywhere. Anybody find one thats good and good tasting?

Son got his first bout of tics, motor and vocal, for about a 4-6 week period this past May and by July they were completely gone. At least I never saw them when I was home from work. Now that fall is approaching, he seems to be getting the motor tics again. His appetite is picking up again and he seems to be growing, too. Anybody have issues associated with the seasons or growth spurts?

Please let us know how it goes. How old is your son? How do you know what the dosage should be?

Back on the board! Been out of the country for a bit because of the job, but I'm happy to report that while all of the tics havent stopped, they have decreased to the point where if you dont look for them, you wont see them. He has a tendency to lift his elbow in a circle (like his shirt doesnt fit), rarely he will lean his head forward and shrug, and he sometimes he does a very small clearing of his throat like he has post nasal drip, but only right before he speaks. I guess we are very lucky. One thing my wife and I have noticed is that he has very unsteady hands and we dont know if it is because he is just a bit weak or if it is related. We never really regulated his diet after about 6 weeks because that's when the hyperactivity, huge meals and tics decreased a lot. Now that I'm back, I will try to keep track of his diet and also see if it is relative to the time of day and fatigue. Thanks for all of the posts.

Thanks Faith. I didnt understand the 51 being listed as 51% because on the far right of the page was 100%. Eh? I'll get updated results back next week along with the DNase B. As far as waxing/waning. He started one month ago on Mon and to tell you the truth, I cant figure out if they are tics. Neurologist said they were strange tics. They seem to be soothing because he can sit for a long time with his finger in his mouth or touching his ear while he is doing something and he is fine. Then he does something with both hands and that's the point where he may cough. This cycle is absent during sleep, less frequent when he wakes up, but after about an hour,he is constantly rubbing his ears, nose, corner of his eye, arm, leg or clearing his throat/hyperventilating when he talks. Wonder if it is some OCD via PANDAS vice tics? Clonodine dint stop any of his behaviors, but took away all personality and he seemed like a zombie. We gave him a quarter of a tablet like the doc said, but only gave it once. 2bit

Determined- I agree. More PANDAS on the TS board. I've seen one ER doc, then a pediatrician and a ped neurologist twice and even though my son started a tic or it could be OCD thing with throat clearing/hyperventilating or touching his face, arms, legs, etc. These things dont look like tics (from what I've seen from the internet, but I'm no MD) because he will either touch or cough - whatever part of his body's not in use. When he gets nervous, he just sticks the tips of his fingers in his nose or puts them in his mouth. Anyway - all we can get from every doctor is "Let's wait and see if these tics continue for a year. That's the only way to diagnose TS. Dont worry, most of the time these things just go away. Want some drugs for now?" I had to ask for a second Antistrep O test to check for trends and an Anti-DNaseB test to see if it is PANDAS. Maybe most docs dont think PANDAS is real? Dont know how the psychologist would know it was PANDAS without doing blood tests. Wish I had some PANDAS info for you like -will it go away without damage. I havent been able to find out either, but here's a link that might help. http://intramural.nimh.nih.gov/pdn/web.htm 2bit