ladyd
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Posts posted by ladyd
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Hi. So my 11 year old son had the full set of dpt vaccines, the last one was in 2007. This past Friday evening (it's Sunday night now) he stepped on a rusty nail. It didn't break the skin, didnt bleed (although I've read that bleeding is good with tetanus) but it did seen to go under the first layer of thick heel skin and it almost looks stained by rust, almost like a rust splinter...but very small, maybe the size of a pinky nail clipping. I've read that as long as he's had a tetanus shot within the last ten years, he should be fine, but other research says five years...and now I'm worried and feel I must take him to the doctor Monday morning while we're still within the 72 hour post injury window. Thing is, my son has motor tics and add inattentive type, and I know they're going to give him a vaccine and I'm scared. He needs another one for middle school anyway. I was going to do titers but I don't have time for that now. Thoughts?
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hi. i don't *think* my son has PANDAS, but I've spent a lot of time on the tics and tourettes board because he does have a motor tic disorder. i came by here today though because I just got a strange phone call from our pediatrician. DS came home on Friday with a mild sore throat, quick strep test was negative at the doctor's. He still has bags under his eyes (a sign of illness in him) but he said he felt better and he never developed a fever or got sicker. He said he thinks he feels better, but his throat hurts in the morning then just feels "weird." the doctor (she's really a nurse but functions like a doctor in the office) just called to say that his longer strep test came back positive for a type of strep that they don't usually treat but if he gets sicker/not better he should go back in, then maybe they'll put him on antibiotics. she said it's a kind of strep that can just exist in healthy people and the body usually takes care of it? I've never in all my years of parenting heard that one before. any thoughts? of course, i immediately want to get him put on antibiotics because of his motor tic history. not sure what to do. or think.
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Just wanted to day, regarding screens, that our son tics more during television watching, but he doesn't watch tv too much to begin with. Flat screens are more problematic that our older not flat tv. His tics also worsened after playing too much wii over the holiday break. So screen time is monitored and reduced but not totally eliminated.
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Michael... The connection between dental issues and tics makes a lot if sense. My sons dentist laughed when he told me how big my sons adult teeth looked on the x-ray, and my son had kept getting headaches in first grade. Doc thought they were from sinuses, but then we discovered all his seven year molars had come in that year.... Ouch. Now this gives me something else to consider, although i doubt I'll find a dentist around here that's knowledgeable about tics. Thanks for the food for thought.
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Have you tried reducing screen time?
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Could you have developed an allergy to something in the environment or a food? It seems that some people with allergies or intolerances react with tics, rather than hives or wheezing or other more typical symptoms. I myself developed an allergy to zithromax at age 34; never had a problem with it before. Many if us have found that food elimination diets and certain vitamins/ supplements have been incredibly useful. My own son has benefitted greatly from a gluten free low dairy diet. Many of us use naturopaths to guide us on this non traditional path; the tics may be your body's way of telling you that something needs an adjustment. I wish you luck on your journey.
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i know it, ozimum. as it is, i have to travel 20 minutes to get to whole foods, where i know i will find the foods we need.
as for that television show -- it's brilliant! we should put together a plan and propose it to the food network. do you get that channel in australia?
i'm sort of not even kidding. a GFCF cooking show. best idea i've heard in ages.
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megan -
you said it! we really do need to be our own doctors and advocates. as much as i want to invest in the whole naturopath path, and i do, i get really frustrated with their legal limitations (as in, not being able to order a blood test), the way the costs add up, and the fact that we have to take so much time out of our days to get to these places. i just wish wish wish there was an integrative wellness clinic nearby, one that was well respected, experienced in ASD, where all tests could be done under one roof with all of the products to purchase there, too. *sigh* again.
also, i never even considered that tomato could be an allergen for DS. he only eats it on pizza. we just found a great gluten free pizza crust, but i guess we do need to find out if tomato is an allergy. IF we ever get the blood test ordered, then done.
the chirping tic seems to have reduced with the absence of gluten again. i would like that one to stay away, thank you very much.
thanks, as always, for your words of support and food for thought:)
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so yesterday DS had a pizza party at school, where he ate pizza. then he went to grandma's, who had run out of gluten free foods (but didn't mention this before i came over), so he had pasta with butter for dinner. today, he's doing a closed mouth high-pitched chirping tic, which would be pretty disrupting if it happens at school. hoping a few days of gluten free again will make this one go away, and fast.
also -- can i complain about our naturopath?
we went a month ago. she made a few recommendations (nothing that I haven't found on this board already), and now we can't move forward until we get some blood testing done. but here's the problem: $300 to go to a naturopath, and she's not legally allowed to prescribe a blood test, so she wants to send us to an integrative-friendly pediatrician (who's at least 45 minutes away) just to meet with her to get a blood test prescription. then we have to go elsewhere for teh actual blood test. i sort of wish i had known this would be an issue before we went, or i would have made a point of going to a very well-known, expensive, and always-booked integrative pediatrician who does the naturopath stuff in addition to having a regular pediatrician's license. she even suggested that I go to him and we work together (only an additional $400 for the same services, plus the blood test prescription). I'm a little frustrated that it has to be so difficult. (My own pediatrician was not amenable to prescribing the blood tests herself since she couldn't see a 'medical reason' for them. The naturopath said that would happen.)
*sigh*
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hey.
i'm glad you told me this. i wish traditional doctors knew more about tics and how to manage them. when DS first started having tics at age 3, it was a heavy sniffing tic. first my pediatrician then an ENT said it was either a tic, or sinuses, and gave us flonase, which we used on him for months. now i wonder if that made the tics worse for the long run. but i'm glad i know now, and will avoid them like the plague.
i need a pediatrician who won't do the shoulder-shrug-it's-a-tic-boys-get-tics thing when i ask about them. as though it's no big deal. when they're really bad, he can barely walk straight. ugh.
and my naturopath, while helpful, is far away and not great about responding to my questions. i wish i knew the best person to go to around here, and who and where that person is. *sigh.*
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Ok, I am somewhat new to the forum myself, but this is a great and supportive place to be, with people who are full of knowledge and experience. Keep in mind that with tics, you will have progress and setbacks, but if stay diligent and vigilant you will start to put some pieces of the puzzle together and get a better idea of what works for you.
For us, we've had a lot of success with big changes in diet and reducing screen usage, but the tic triggers are different for everyone; and sometimes they are just completely unpredictable.But the others on thisboard are right... Find a likeminded doctor who preferably has worked with tic issues before.
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thanks for these cooking ideas! the porcupines sound particularly interesting. i love getting aussie cooking tips from you here on the forum. so amazing. i have been telling DS that gluten-free is his anti-tic medicine. i think dairy is less of an issue, from what i'm seeing with the elimination diet, still trying to keep everything more protein oriented. it's incredible. he is already filling out a little bit, not quite so scarecrow skinny, the bags under his eyes look better, and he has so much more energy.
the other day a friend of mine, who works with ASD kids, said she's seen so many parents try this diet, with initial positive results, but then the diet stops working. i felt so depressed when she said that. but from what i see, if you really keep with it, your child just benefits so much, continually. and having no screens has been nothing but beneficial for our family -- and DS just finished the fourth harry potter book (take THAT ADD inattentive!)
another question -- is there a benefit to using coconut oil over, say, olive oil?
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I'm going to have to try. Should I explain to him that the gluten free is necessary for the tics to go away? My husband let him have regular bagels two days in a row and the tics have worsened, which further convinces me that it's gluten related. Also, he said he felt like he had a knife in his stomach one time after eating regular pizza, and another time after having a bagel.... This is a child whose never had stomache aches... It's hard to avoid what with pizza parties and whatnot at school, but I need him to understand that gluten free is his "anti tic medicine." one more question... Is rissole like a casserole? I love learning Aussie speak!
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Ozimum-- is spag bol spaghetti with bolognese sauce? He won't eat soups, stews or pasta with sauce, either. He gives us limited options on what we can prepare for him. It's exhausting brainstorming meals for him. .
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When you refer to environmental allergies, is that like an allergy to dust or pollen, or something else entirely? DS got his official ADD inattentive diagnosis today, btw. The tics were worse today, but have been all over the place, mostly better, though. He has a new one where he flares his nostrils rapidly, which I can't even do if I try! But he has been a bit sniffly. The pediatrician gave us nasonex and said to give him zyryec, but I'm afraid to give him anything that might increase the tics, although drying up his sinuses could possibly help the tics ? I'm all over the place myself.
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Thanks so much Megan. You are right, going gluten and dairy free has been more challenging than I thought it would be. We are also trying to do less eggs, which has been challenging, because for so long his healthy non carb breakfast was an egg omelette. We haven't really substituted much dairy, he just doesn't eat it. He didn't like almond milk and hasn't tried rice milk yet. Meals are a challenge, and he's getting bored of gluten free pancakes, chicken nuggets, fish sticks, rolled up ham-- that's his lunch-- French fries and sunflower seeds. Still can't get him to eat any veggies or fruits, or other meats. He'll occasionally eat shrimp. We did let him have a slice of regular pizza last Friday with no I'll effects. Were also screen free but we let him watch a movie on Saturday. He's been much better the last few days; the clean diet is totally helping.
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Thanks for the support. Do you notice that your child seems more pale with bags under the eyes on the days the ticcing is worse? I do. I need to look into the vitamin d levels too. I myself have insufficient levels. Unfortunately the naturopath we see can't order blood tests herself so we have to wait until march 4th appt with a naturopath friendly ped to see if the tests can even be ordered. It's a shame our health care system isn't more natural medicine friendly. We are forced to do so much running around.
Also, if we see no food intolerances in the blood test, then what? Do we keep eating gluten free?
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Well, he's still ticcing today, but it's better again, and he just seems more focused in general. Maybe he subconsciously pulls it together for the schoolweek.
February seems to be a tough month for many of our kids... Or am I overanalyzing everything now?
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thanks for all of the words of encouragement. we're doing gluten free and mostly dairy free, which we thought was doing the trick all week...but then, suddently, the return of the tics...
makes me question refusing my sweet DS his beloved bagels...
we're weeks away from the blood test, which may give us some answers about food intolerance (the scratch test showed nothing).
i did revisit the triggers page, chemar; i think we need to check his chocolate intake (again, wish i knew -- is it dairy? gluten? sugar? eggs? i want to take away the bad foods but know what i can give him that he will enjoy, and he's such a picky eater!)and again, the trigger could be something else entirely; again, like you said chemar, they can be mysterious. i think a few days of sunshine and outside play would be good for us all.
so much guesswork involved. but i won't give up on searching for answers. ever.
it was distressing today, he was so busy ticcing he was practically tripping over himself. ugh.
but i will keep the chin up. it's best for me, and especially for him
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DS was doing great all week, tics almost nonexistent as of friday...then saturday morning he woke up ticcing. has been ticcing ever since. still doing the same diet. no extra stress, although he is out of the school routine on the weekend. this is part of wax and wane? i thought the wax and wane thing happened in longer phases -- when the tic disorder first started, he'd tic for a few weeks, a month or two, then no tics for months....but that doesn't seem to be happening this time. yet. ugh.
ps: he's begging to play a video game (he never played a lot to begin with, except for during christmas break, right before the latest flare up started.) it's been about three weeks with no screens, except for the few they use in school from time to time. i can't expect the child to never watch tv or play a video game again. and if i wait for this flare up to end, i may be waiting forever. what to do?
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What he ate for lunch, because he was doing so well today in math. I wanted to send in a note: he's not eating gluten or dairy! It's what's he's not eating that you should be asking about!
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Thanks for sharing your stories and words of encouragement. Sounds like the pandas adds a new level of stress with the OCD issues thrown in. Did your son have tics, too?
Did your naturopath give you any hemeopathic remedies?
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Hi ozimum, thanks for sharing your experiences and knowledge. I really soak it all up.
So were back to the gluten free, and haven't fully started the supplements (wanted to wait for the wkend to watch it), and even tho the tics are in full swing--quite literally-- Nick already looks healthier. Brighter eyed, you know? Today was a huge day for him. He performed in a live wax museum today in school as Confucius... Gave a speech in full costume and everything.. No tics during the speech, but many before and after; the flashes from the camera didn't help, then they celebrated with donuts and cookies, which he ate. There are many obstacles to being gluten free. Then, tonight, we went to a books and blanket event with this guy whole tells folktales while painting the faces of kids he calls on stage... Well, out of the whole school, guess who got chosen? There he was on stage with four other kids, ticcing away, except when his face was being painted. And now tomorrow at 8 am, he wants to go to his basketball game, another place he tics in front of an audience, but he doesn't care. He's teaching me a lot about courage and not caring what others think, and he's living life to the fullest. It's sort of amazing, to put a positive spin on this thing. He said today was the best day of his life, which makes it one of the best days of mine. I can't let these tics cloud positive experiences.
What's your journey been like, if I may ask?
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Hi everyone,
back from the naturopath and feeling much more hopeful. She thinks he has leaky gut (do they all say that? Feel like I always read about that dx), recommended we continue the gluten and dairy free diet, and put Nick on a vitamin, fish oil (which she feels will reduce, rather than increase, like some on this board have seen), also added a probiotic and a "warm belly" thing involving a Non electric heating pad on his belly at night. She also gave us a homeopathic treatment, and wants to get bloodwork done asap to check levels, especially carnitine. She feels quite confident this will improve slowly but surely. I do feel better. No one really has definitive answers and I have to accept that.
I really appreciate the feedback and support... Sometimes it feels like the world is tic free, except for my kid...
Tetanus booster?
in Tourette Syndrome and Tics
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Thanks Chemar! I knew I could count on you for a speedy reply. I'm taking him in at 10 am; he does need the booster for middle school, anyway. Glad to hear your experience was ok.