starlygirl
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Posts posted by starlygirl
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My Dad is an engineer. My husband works in the civil engineering field.
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Hi
I am not speaking of strep in your son's case
In your first post you said
our son who is 13 has just finished with a very long virus (started 2nd week of January),A virus can cause PANS which is different from PANDAS. PANS can be triggered by any microbe whereas PANDAS is from strep. You said your child had a virus and since then has had that cough tic. That could be a manifestation of PANS
Gotcha..I will definately ask our dr about that - as it currently stands other than the cough/throat clear there is nothing different about his behaviour other than feeling self conscious about making this noise and not being able to chat about sports, school and the usual things we talk about.
Def. look into PANS. My son presented w/ this same cough tic (no other symptoms) after what was most likely a viral infection. He has PANDAS/PANS.
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Lilly - Ask a doctor to do a nasal culture (they'll swab the sinuses similar to how they swab the throat for a throat culture). My son had a fungal sinus infection for months & his old doctor kept prescribing different allergy medications. We switched to a new ped who took a culture and low and behold, it was a fungal infection all along. He was prescribed diflucan.
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I would also agree you can not rely on out word signs of yeast as we had none other than some periodic hyperness or AD/HD type symptoms in younger DD and dime size eczema patch on DS. They were on Nystatin so I thought we were covered. My kids have been on long term "multiple" antibiotics plus we were doing a ton of detox with them. Its turns out our kids also have heavy metals issue so the combo of antibiotics and pulling of heavy metals made it extremely difficult to get ahead of yeast even with regular dosage of Nystatin. We anticipate the yeast to be a continuing problem as we go through chelation and continued antibiotic treatment. Its one of those things that no matter how you are able to test, its important to monitor if you are on long term antibiotics. If it is unrelenting, like it was in our situation then I'd also be checking for heavy metals.
SF Mom - What test would you recommend to test for heavy metals?
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This happened to my son once. He was scratching furiously all over for a few minutes. A couple other times, he has suddenly felt like ants were biting him. I didn't see these as tics, but did see them as something going haywire in his nervous system. It's only happened a few isolated times & very briefly, so I haven't asked any doctors about it.
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I have considered it, but my son can't swallow capsules and I understand the NAC powder tastes really bad. I'm keeping it in mind for the future for sure. Will be interesting to see the study results.
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Here is the website for the lab: http://www.moleculera.com/
It says the lab should be open for business around the end of February.
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The manifestation of waxing and waning is as variable as the manifestation of tics! For example, when my son was younger, waxing and waning simply meant a change in the frequency and severity in the tics...but he still ticced to a greater or lesser degree every day.
Now, as a young adult, his tics are minimal and he will go through long periods in waning mode, then something may trigger waxing tics for a bit. But there may still be occasional tics even when in waning...so again very relative.
When a child goes through long periods of no tics at all and then they suddenly start up again....I would strongly consider investigating something other than TS as the possible cause for the tics eg PANDAS/PANS, food or environmental allergies, toxin exposure, etc
Thanks, Chemar. Our pediatrician does suspect PANDAS, so we are currently giving a longer course of Augmentin. We are also doing a gluten-free/dairy-free/soy-free diet as well as no artificial colors/flavors/etc. And we are addressing yeast overgrowth, methylation issues and giving several supplements/vitamins/minerals based on testing that was done by this pediatrician who uses an integrative approach. We've been doing all of the above for 2 months and he has been *almost* completely tic free for the last month, so I'm really hoping to maintain the good results. Just nervous that the improvement might have nothing to do with any of the stuff we're doing & may simply be attributed to waxing/waning.
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Can anyone describe what waxing & waning looks like in yourself/your child? I'm trying to understand what level of fluctuation is normal or if there is no "normal". For instance, does waxing/waning mean that symptoms are always there, but sometimes milder than others? Or does it mean symptoms can disappear completely for periods of time (weeks/months) and then become very severe for a while, only to disappear again. Just curious. My son fits the latter description - over the last year, he has fluctuated wildly between severe, almost continuous tics and little to no tics at all - each stage lasted for approximately 3 months.
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Hi - I wouldn't be too scared of the amox. I'd think if it were to have a negative impact on tics, you'd notice pretty quickly. For a positive impact (in the event of PANDAS), it could help right away or it could take longer. My child just turned 5 and has been taking Augmentin (which is Amox + another antibiotic) for 2 months now for suspected PANDAS. It wasn't until the 5th week that we noticed a huge improvement, and I'm still not sure if the improvement can be attributed to the Augmentin or to natural waxing/waning or to other things we are also doing (vitamins, supplements, diet, etc.). Anyway, good luck & keep us posted on how everything goes.
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I've had the same frustration. I just assumed it's because Tourette's must be so rare that there are hardly any people reading these forums. Which then makes me feel even more isolated than I already do in real life. I can't believe there's not a more active forum online to discuss these issues unless there really are only a tiny handful of people in the world dealing with this. I notice the Pandas board is more active, so I read that as well since my son seems to have some kind of unlucky combination of underlying Tourette's as well as Pandas symptoms (tics greatly exacerbated after illnesses). I will try to post more often. Maybe people are just shy about posting in the first place since hardly anyone does.
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Thanks for the help! I discontinued everything except Augmentin today. The rashes look better. However, he ran a fever today, was lethargic & a little congested, so I think he's coming down with a cold virus now. Hopefully fever, etc. is not a reaction to the Augmentin. Will continue to watch closely tomorrow & have Benadryl on hand if needed. Will eventually add the other things back one at a time very gradually & probably start at lower doses & work up to full dose.
LLM, thanks for the info about the folate. Looks like the Kirkman multi we're using has 400mcg folic acid in it. The B6 & B12 lozenge also has 800mcg folate as "calcium folinate". Should that form be avoided as well? Dr. had wanted us to start out with 1g of the 5-MTHF, but after reading your story, I think we'll start at a fraction of that & slowly work up. My son has 2 copies of the C677T mutation.
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We finally found a local pediatrician to treat PANDAS. She takes an integrative approach & has suggested many vitamins/supplements in addition to antibiotic based on various tests she ran. We started everything at once 2 weeks ago, which was clearly a bad idea, because DS keeps getting rashes. They are itchy/burny feeling red bumps that have cropped up first on his back, then legs, now face. At first I was thinking it was from detox/dieoff, but now I'm worrying he's allergic or having a bad reaction to something. I think I'll have to discontinue everything & reintroduce one at a time. Any ideas on which of these items is more likely to be causing rashes?:
Augmentin for PANDAS
Diflucan for yeast & fungal infection in sinuses
Kirkman chewable multivitamin
5-MTHF for MTHFR mutation
Vitamin B6 & B12 lozenge
Vitamin D
Fish Oil
Probiotic
I'm just really hoping he doesn't have an allergy to Augmentin. He's taken it before, but I suppose he could suddenly be allergic?
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Starly girl- who is your PANDAS DOC? Dr T has sugessted Valtex to us as well. I did not see any improvement though.
We don't actually have a PANDAS specialist. This is an open-minded local pediatrician who apparently sees a fair amount of PANDAS cases in her practice.
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We have recently started a 3 week trial of Augmentin for my son. If that does not help his symptoms, his ped will prescribe a 3 week trial of Valtrex. She has found that the Valtrex helps some of her PANDAS/PANS patients if Augmentin does not. Has anyone had any experience w/ using Valtrex for PANDAS/PANS?
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Has anyone ever considered homeschooling to reduce the amount of bacteria/viruses your child is exposed to at school? I know many wouldn't have this option, but if it were possible, would you do it?
Just something I'm pondering. My son starts Kindergarten next year. He reacts to everything (basically any illness that begins with a fever sets him off with severe vocal & motor tics). I never intended to homeschool, but I could and would if I thought it would make a big difference to his health situation.
On the other hand, depending on the kid's personality, they might really miss out if they didn't get to attend school & it could be worth the risk of exposure to send them. Thoughts?
Stacy
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Am I wrong in thinking his learning disability is due to Tourettes or is it just one of those 'possibly ailments' that may accompany Tourettes?
Without knowing all the details, it's hard to say, but I'm wondering if the learning disability might be more connected to the ADHD? I don't think learning disabilities automatically go hand-in-hand with Tourette's, but at the same time, it wouldn't be surprising that a child might have both Tourette's and learning disabilities as well.
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We've been told by our new pediatrician no more vaccines period. She was particularly against flu mist, but I assume flu shot is off limits as well. My son fits the diagnostic criteria for Tourette's, but the ped thinks he is PANS, so take that for what it's worth.
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Thank you all so much for the replies. Seems Lyme may be worth looking into further, although we don't have any LLMDs nearby, so it will involve traveling. Do any LLMDs work with people remotely? I assume you have to go in person for the first visit at least. On the Quest western blot, my stepdad (a psychiatrist) ordered that for me along with a bunch of other bloodwork I'd wanted to check, so I actually have the original copy of the report that was sent to him by Quest. It doesn't say anything about any bands at all, it just says "negative", but no more details beyond that. I wonder if he could call Quest to get a more detailed report.
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My 4 year old son has had a wide variety of motor tics & a couple of vocal tics. It would appear that he has Tourette Syndrome, but I'm wondering if I need to rule out Lyme. He's had a couple of isolated incidents where he got really upset & said it felt like ants were biting his skin (lasted only about a minute). Yesterday, he had something similar but instead of ant bites, he suddenly started itching all over his stomach & back. There is no visible rash. The intense itchy feeling went away after a couple of minutes. Nonetheless, I'm wondering if these odd itching/burning skin sensations could be related to Lyme or coinfections and maybe that's contributing to the tics as well.
He was bit by a tick at the age of 2, but I dislodged it within an hour. He did not have any flu-like symptoms afterwards & I did not notice a bullseye rash. He was tested for Lyme by Quest Western Blot a while back & it came back negative, but now I'm reading that this could have been a false result.
I'm only just now considering the possibility of Lyme & wondered if anyone else had a child who presented as if they had Tourette's, but it turned out to be Lyme? Did your child have any other symptoms? Did they have a wide variety of tics, both motor and vocal? Was the onset sudden or gradual? Did the tics wax & wane in severity? Thanks!
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I realize Natural Calm is what he has...was just wondering if he'd tried it out yet.
Looks like the recommended dosage for a 6 year old would be 120mg (source: http://www.mayoclinic.com/health/drug-information/DR602371)
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Is this the same thing as "habit reversal training"? I've thought about it as a possibility for the future (I think my 4-year-old would be too young to do it right now & his tics are really mild at the moment anyway). But then I wonder if it's really a good thing to do or not, since the advice is normally to ignore/accept the tics, but this therapy aims to teach them how to stop tics, so it feels like a mixed message in a way.
I'd imagine it could be helpful for someone who has a specific tic they want to learn to stop or redirect or maybe for an older person who wanted to try the therapy instead of or in conjunction with a medication. But for a kid, I don't know if I'd do it unless the child really wanted to.
Stacy
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Have you tried the Natural Calm yet? I don't think it would mix well with milk as it has a very tart flavor. I'd suggest orange juice, although my son won't even drink it mixed into the juice. Or maybe something like lemonade? I believe a child's dosage would be about half of the adult dosage listed on the bottle.
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You probably already know this, but make sure you vacuum & dust the house really well after the cat goes to your Mom's, since the cat dander will still be floating around even though the cat won't actually be there.
Vocal Tics & School
in Tourette Syndrome and Tics
Posted
Just wondering if anyone else has/had a child with severe vocal tics who attends school. What was your experience with school/teachers/classmates. My son is literally ticcing every second or two all day long with various loud throat-clearing & hacking sounds. It never lets up. It's so awful, I don't think I can send him to school like this. He's supposed to start Kindergarten in August.