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Everything posted by Chemar
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Impact of anesthesia on kids with tics
Chemar replied to Lwei66's topic in Tourette Syndrome and Tics
Hi LW My son was reactive with increased tics to both dental work and anaesthesia (local, as well s general). That doesn't mean yours will be though, but that was our experience. It's tough because sometimes procedures are necessary and so we just have to cope the best we can. -
Hi Yes, Tourettic OCD was always one of the most problematic aspects for my son. The way it was explained by our physician was tics morphing into OCD and vice versa. My son did benefit from Cognitive Behavioral Therapy for this, along with his overall supplemental/nutritional/environmental protocol. Specific acupuncture and resonance biofeedback really helped as well
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Hello Our Integrative doctor recommended very low dose melatonin 300 MICROgrams after dinner. It really helped and we only needed short term use as my son's sleep pattern improved. But he was already 10yo so I am really not sure for a child of 5. If you used a higher dose, that may have been the problem? Our doctor warned us against Valerian for a young child although said ok for adults. Passiflora (from Passion Flower plant) is also used by some people, but again I have no idea re a very young child like yours. There are also soothing essential oils that can be diffused or in some cases applied (check first re application as not all essential oils can be used topically, some should only be diffused or inhaled. They can sometimes have a very soothing effect and promote good sleep. My son has always found an Epsom Salts warm bath very helpful for sleeping soundly. Chamomille tea is great for relaxing and sleep, and can even be used in infants from what we were told. I'm sure there are a lot of other natural sleep remedies, but those are some we found helpful. PS When there was agitation etc resulting from not being able to sleep, we used a few drops of Bach's Rescue Remedy (Flower Remedy) under the tongue, which is an instant calming agent, but again do check re age before use.
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Hi Chris and welcome. I am sure Sheila will respond as soon as she is available, but just wanted to mention that my son (now in his late 20s) did find tremendous relief for his OCD and related Tourettic tics from Jasmine Oil. My son was diagnosed 20 years ago with severe TS, had horrid reactions to assorted medications, but was greatly helped by nutritional supplements and dietary/environmental modifications along with acupuncture etc. Very interesting that you are seeing positive results with Essential Oils! I look forward to your future updates and hope things continue to improve
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Hi I found another that may be of help If you use the search function top right of the main page, you will find more threads as well
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Hi Pug There are also some threads on our TS/Tics forum that discuss this: Here is one of the more recent ones that may be of help to you.
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11 Year Old Daughter Has Had Vocal Tics.
Chemar replied to Wonderfulmom's topic in Tourette Syndrome and Tics
Hi wonderfulmom I am on my way out so can't post much, but did want to welcome you to the forum, tho sorry to hear of the reason that brings you here. If I can encourage you....persevere! If you find things that are helping, follow the clues. Same for things making tics worse. Keeping a journal, and noting these potential tic triggers was very beneficial for us. Do take a look at the pinned posts at the top of the forum as lots of helpful info there to. -
Hi Martin I don't know if it was the smoke or the fragrance in it, but my son has never been able to tolerate incense He is very sensitive to perfumes etc and has a MCS (Multiple Chemical Sensitivity) diagnosis
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You are very welcome Sarah. I know it doesn't solve the very real issues you are dealing with, but it certainly helped me have support from other parents who understood. I also wanted to point you to our "Useful Threads" pinned at the top of the forum, as you had mentioned wanting to gather some info when you see the neurologist. You may find some helpful ideas there. Our personal experience with conventional docs was sadly only prescriptions, and that really didn't benefit my son in the long run. It wasn't till I found ACN/Latitudes and started a different type of approach that we saw relief and improvement. Also do be sure to check the excellent resources on the main website here http://www.latitudes.org
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Useful Threads & Info for Tourette Syndrome & Tics
Chemar replied to Chemar's topic in Tourette Syndrome and Tics
There are also numerous other resources on the Main ACN Latitudes website https://latitudes.org/ -
Useful Threads & Info for Tourette Syndrome & Tics
Chemar replied to Chemar's topic in Tourette Syndrome and Tics
Sheila Rogers has written another excellent resource book: Tourette Syndrome: Stop Your Tics by Learning What Triggers Them https://latitudes.org/store/tourette-syndrome-triggers-book/ -
Hi Sarotchka I just wanted to let you know I doubt there is a parent here who has not experienced the heart wrenching you are experiencing. It is one of the hardest things to feel helpless when we see something is wrong with our child. If I can encourage you...my son was just 10 when his tics, OCD etc exploded with such severity that it was causing him injury, followed by him being put on a medication that made things so much worse that he ended up in hospital. However, things did improve even though yes, it was a long and hard road to walk with him, especially to control my own fears and stresses and just let him BE. But he is almost 30 now, and a wonderful young man who faces life head on, filled with great compassion for others who struggle in any way. To try to answer your questions It's always possible that there might be a PANS connection, but if his bloodwork and symptoms don't match, likely not. However you might also want to ask on the PANS forum to see what the more experienced parents suggest. Yes, low magnesium can play a part in tics. We noticed a remarkable improvement when we began supplementing my son's magnesium, along with the Epsom baths. Do note that magnesium oxide (found most frequently in supplements) is near to useless as it is very poorly absorbed. As far as your own stress goes....phew! As In mentioned above, we all know how hard that is to control. But we also know it is very important for a child with tics not to feel like they are constantly under a microscope as it definitely makes it worse for them when we are focused on their tics. It takes a lot of self control, and sometimes you just need to go for a walk or do something just for you to be able to decompress. I am a person who believes in the power of prayer, so for me that was a major "go to"! Also being able to talk to others who understood, even though their situations might not have been exactly the same. I was part of a Mom's group for kids with special needs and that really helped me a lot. Here is something written by my friend Lara that helped me put things into perspective. I hope it helps a bit for you too. ♥
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Chinese cupping is also used for detox, and there are other detox herbal & juice remedies and treatments available. Drinking warm fresh lemon juice water is one of the simplest (hot water with juice of a small lemon or 1/2 large one) Add a spoon or 2 of honey if needed, but plain is best imo
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Just a quick reminder that antibiotics are not considered a standard treatment for all kids who have tics. They are specifically used for kids who have tics related to PANS/PANDAS
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Hi Shelly I noticed you mentioned the underbite issue and wonder if you have looked into the tics that some kids have caused by TMJ problems. There are some threads on the forum related to a mouthpiece that seems to help some kids who have TMJ related tics. Try doing a forum search for keywords like TMJ mouthpiece tics or transmandibular joint and see if some of those posts sound like what you might be seeing with your child,
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Hi Have you taken him to a doctor to see if there is any physical ailment that could be causing this? eg appendicitis or a possible digestive disorder? Even a food allergy eg to dairy or gluten intolerance or sensitivity reaction to something else could be causing it (environmental allergy?) I would definitely have his doctor check him out as this may be unrelated to the tic disorder and something that may need medical attention If you suspect PANS, here's the forum https://latitudes.org/forums/forum/17-pans-pandas-lyme-included/
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Hi If you may be dealing with PANS where autoimmune issues can be underlying, then things that "boost" the immune system could possibly be causing that reaction? The fact that antimicrobials are reducing your tics might be indicative of an underlying PANS situation. Also, there are the flare ups associated with herxing/die off reactions. You may want to also ask on the PANS forum. https://latitudes.org/forums/forum/17-pans-pandas-lyme-included/
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- tourette’s
- tics
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Hi Patty, Sorry to hear this reaction. I have no personal knowledge on TB skin test triggering something like this. I'll alert Sheila to your post as she may have info for you. It's good to see you again, tho sorry it is under this situation.
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Hi there If the tic increase is linked to this time of year, could it possibly be seasonal allergies? Those don't always necessarily have a "stuffy nose" as symptomatic Has he had any allergy testing done?
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Pandas/Pans literate pediatricians in Boston area?
Chemar replied to Zepplyn22's topic in PANS / PANDAS (Lyme included)
bumping up a new member post in case anyone can help- 2 replies
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- north shore
- south shore
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Alittle question about counter meds
Chemar replied to mrbeanhq's topic in Tourette Syndrome and Tics
Hi We had the same problem as my son has MCS (Multiple Chemical Sensitivity) CVS pharmacy has their own brand ibuprofen in a dye free version. We have always used primarily natural treatments of which some have antimicrobial properties and can help pain relief (eg Oil of Oregano capsules) Also white willow bark instead of aspirin, but be cautious if salicylate sensitive. -
Starting oral steroid for the first time
Chemar replied to _Misty_'s topic in PANS / PANDAS (Lyme included)
Hi I moved it to PANS forum for you. -
Hi We used to rub it into the areas where tics were prominent. He especially benefitted from having it rubbed into back of neck and between shoulders. We used it when there wasn't time or opportunity for an Epsom Salts bath
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Yes, and yes We used Epsom lotion (magnesium sulfate) I think only Kirkman's makes it now. We used to make our own, then used Mortons! So sad they discontinued it.