Chemar

Hello Ashly Sorry you have not yet had any responses, and for the struggles your son is going through. I know you mentioned you had strep titres done, but other microbes can also be implicated in PANS, so it's beneficial that you have also posted on the PANS/PANDAS board There is also a lot of info on our pinned threads both here on the TS/tics forum and on the PANS forum as well as the OCD forum, and lots more articles on the website https://latitudes.org/ We found magnesium very helpful for tics Oral supplements plus transdermal by Epsom Salts baths.I have a thread from years back on what helped my son, but do remember each situation is unique so there may be issues mine had that are different from your son's https://latitudes.org/forums/topic/687-the-treatments-that-have-helped-my-son/ I will try to check back later to post more or answer any questions you may have. My best to you.

Hi My son with TS/Crohn's had abx sensitivity and we found Olive Leaf Extract, Monolaurin (Lauric Acid), Oil Of Oregano (capsules) and other natural antimicrobials very helpful, including dietary garlic, honey etc. I don't have experience with these and PANDAS

Hi samz Sorry to hear of your son's struggles. I know nothing about sertraline so can't really comment re that effect, but thankful you have Sheila's book as a resource. Hopefully she or someone with more info will be able to post to you soon, but I just wanted to let you know you are not alone and that there is always hope in finding solutions.

Just a quick FYI to anyone reading here that Sirena & vvny have children dealing with PANS so responses may be different in kids that have tics for different reasons.

Hi shobo This might be a form of OCD (Obsessive Compulsive Disorder) manifestation? If so, CBT (Cognitive Behavioral Therapy) can be very helpful Whether these are tics or OCD symptoms, do remember that the more attention you draw to either can actually intensify them. I know it can be hard to "ignore" when something is drawing our attention in a negative way, but your wife is being honest when she says she can't stop doing those actions. Tics and OCD are involuntary. So my advice is to try to be understanding and supportive as that will make it a lot better for both of you.

Hi mlee I agree with Sheila's comment, and can add that my son had tremendous benefits from his nightly Epsom Salts baths. and when a full bath wasn't convenient, he would do the Epsom footbaths We always ensured he drank plenty of water, and never noticed any laxative effect from the transdermal uptake, just soothing of tics and muscles, and sound sleep following. Good to hear your child is also responding well to this.

Yes, there are numerous posts here related to screens and tics. Try setting your devices on the night light setting and even using computer glasses (you can get those unmagnified if you don't need glasses) It helps with the glare and flash that can sometimes trigger tics. Also search info on Irlen here. Daylight lamps used at night can also help. We focus mostly on natural treatments for tics and Tourette's here. Do take a look at out "Useful Thread" pinned to the top of this forum as you may get some extra tips to help in general https://latitudes.org/forums/topic/2459-useful-threads-info-for-tourette-syndrome-tics/ Our admin Sheila Rogers also has 2 excellent books that may be of help https://latitudes.org/store/tourette-syndrome-triggers-book and https://latitudes.org/store/natural-treatments-for-tics-and-tourette-syndrome-book/

Just an FYI that if you search under chiropractor or chiropractic here on the forum you will find many threads with positive results. I have not heard chiros called functional "neurologists" but perhaps that requires different training? We have always used NUCCA chiros, and later also discovered how good Atlas Orthagonal is. It was not a "cure" for my son, but gave tremendous benefit in conjunction with the other treatment modalities we followed. It was also helpful in that my son's head/neck tics would frequently put him "out" and cause discomfort.

Hi mudhoney Sorry your post has not had any answers yet. I am bumping it up in case any other members from Australia may be able to help. Based on your descriptions of the separation anxiety and feeling ill, headaches, it honestly would be wise to investigate further to check if any infection connection (ie PANS/PANDAS) as well as allergies (food & environmental) etc If your child has had strep or possible other infections, you may also want to check ou PANS forum https://latitudes.org/forums/forum/17-pans-pandas-lyme-included/ We found using Integrative physicians best as they have a more holistic approach (They are fully qualified conventional MDs who also have training in complementary/alternative/naturopathic medicine. Do also take a look at our pinned post with potential helpful info I hope this gives you some avenues to follow.

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

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.

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

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

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.

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

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

There are also numerous other resources on the Main ACN Latitudes website https://latitudes.org/

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. ♥

I am so thankful to see this policy statement from the AAP on the dangers of not only Food Additives, but the plastics etc that food comes in contact with! http://pediatrics.aappublications.org/content/early/2018/07/19/peds.2018-1408

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

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

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,