tiaratoledo

Hi @Swetha, Thank you for your response and for sharing your experience/perspective. We are putting so much efforts and not even seeing the slightest sign of progress is discouraging. If anything today was one of the worse days. My head is spinning. He is not sick or has been sick for a long time, so in his case I don’t see a relation. Today we had a first appointment with naturopath doctor to start the testing, so let’s see how it goes. I am finishing Sheila’s book and the next will be the one you recommended. Thank you, Tiara

Hello, A little update/request for sharing experiences. Today it’s been 20 days since the flare up began and around 10 days since we have diligently: * followed a new diet free from gluten/sugar/diary/eggs/corn/MSG and food dye. Very clean diet, everything organic, home made, lots of fruits and veggies. We are being very strict following the diet. * changed house chemicals from toothpaste to all cleaning products, including his body soap * Changed all bedding items from cotton organic GOTS certified: pillow, sheets, blanked, mattress cover * absolutely no screen time and lots of time outside * epsom baths every night + Omega3 + B12 * NAET 2x week * He is in a great mood, playing and not stressed at all I feel we are doing everything correctly, but unfortunately we had 3 better days (that’s when I wrote) and then it got worse again. Maybe not to the severity of the first 5 peak days after he went swimming in the chlorine pool, but we are definitely not seeing ANY improvements with all those changes. The intensity can vary without any reason throughout the day. Afternoons overall are a little better than Mornings and Evenings. I’m keeping a journal and trying to make connections but I don’t see anything. No logic for the daily fluctuations. It is hard to be hopeful and positive when there is no sign of improvements. When you have gone through the same changes, how long it took for you to notice improvements? Sometimes I read in some posts of the forum that I should have noticed changes “immediately” or “within days” after changing diets. I know the forum is also about proving support and hope, but I want to be realistic. Am I expecting results to soon? Thank you!

Atex, Thank you for this post. It fuels me with hope. Tiara

Thank you @Swetha. I needed to hear that. It’s not linear. Because my son previous tic came and then completely vanished, deep inside I was in the hope it would also happen this time. But being realistic this time feels very different. He is now having many sorts of motor tics, so it might take longer to have this body detoxified.

Hi @Swetha thank you for adding your recommendations. ☺️ The four of us are vegetarian so we all take B12 vitamins on a weekly basis. Also when I took him to the neurologist they tested to B12 and the levels seemed normal. I’m with you when it comes to adding meat. I’ll eventually do it if I have to, of course, but I want to try all the others before. Let me ask you. Since you have changed his diet, you have noticed a moderate reduction in tics, drastic reduction or even has completely had periods with no tics? I’m trying to adjust expectations. Yesterday he was super fine, one tic every 4 minutes more or less. I feel I did everything right yesterday in terms of diet, but today he is much worse. I’m frustrated since if anything I would expect him to not get worse.

@Atex I was not considering restringing MSG and Natural Flavors, but I think you are right. If we want to test what is triggering him, I should also include those two in the list. Anything else you would recommend to also avoid in his diet for this period of intense restrictions? To recap: gluten free, diary free, sugar free, MSG and natural flavors. Natural Flavors is hard. Basically anything we buy at a supermarket has natural flavors. 🤯

Thank you @Atex for the suggestion. I like the approach to start with a very restrictive diet for a month or more, observe how he reacts and then reintroduce things little by little. I’ll follow this path, since it seems it’s the only way to really observed the causality of each potential trigger. We have started yesterday with a diet free of gluten, diary and sugar. I’ll wait a few weeks to see how he reacts. What puzzles me is that even before we used to eat pretty well in our house. Like we buy everything organic since ever, we prep our own food, we are vegetarians so everything that the boys eat at school are the foods we prepared at home. Thus, it should be something very specific that might be worsening his symptoms. I’ve changed their toothpaste for “Tom’s”, bath soap to “Dr Brownner’s”, house cleaning products to “Attitude”, dishwasher pods to “Molly’s Suds” and laundry detergent to “TrulyFree”. I can’t think of any other chemical that he might be in contacts with. Even the stuffed toys in his bed, I’m trying to remove them one by one without him noticing.

Hi @klypciwhdhdo thank you for sharing your history with your son. Indeed very similar experiences, since my sons tic is also rolling both of his eyes to the left but he also moves his head and shoulders in a combined movement. Some days he also bends his head to the back, and I have also seen him rotating his head 360 in a really bad day. I am starting this path, so I have no credibility to send recommendations, but I have changed his diet, have started epsom baths and have changed his water. Oh and I forgot to say, no screen time. Like really zero, since I noticed screen would make it worse. I am not sure what is affecting him, but what I can say is that the tics have reduced in frequency. Tell me more about what you are trying. Let’s keep sharing our experiences and learning together. One thing I got from this community is that there is hope and there is support from each other.

Swetha, Sheila and Atex, thank you for your tips and encouragement. I’ve been devouring this forum, taking notes of everything and I have already started applying some things I’ve learned here: * Started with magnesium and Epson baths (I’m adding just a cup of the salt since he is little) * Had two sections of NAET: one for chlorine and other for neurotransmitters. Also had him NAET tested for food allergies and he reacted to many things, so I’ll continue this path for many other months until we treat it all. * Have started him on a diary free, gluten free, no sugar diet. It’s been only 3 days, but I want to follow it for a month to help his body to detox * Have changed his drinking water to bottled water instead of giving him the water from my Brita filter (we are considering a whole house filtering system to eliminate chlorine even from bath) I am not sure what exactly is working or if it is the combination of all of that, but it’s been 3 days that his tics have significantly reduced. I can’t express how happy I am. He is not free from tics. He is still doing the same one (rolling eyes and head to the left) but much less frequent. Today was the best day. One tic in every 3 minutes, on average. Chemar, thank you so much for sharing your son history. it’s reassuring to know that there is hope. I read the thread you shared and there is so much valuable information. At this point I feel I need help to define a protocol. Of course I’m beyond happy for having the his tics reduced, but I feel I need to be more precise in identifying the cause and effect of each treatment, so I can have a clearer view of what works. Also, I have not done any tests on him. The thread mention several tests, from allergy, virus to genetics, that could be done to define a protocol. Is there a thread that summarizes a path in terms of testing? If not, I would greatly appreciate any tips from this group. _______ Atex, to your comment about pesticides, very good point. We normally spray with a company that claims they use natural ingredients, but I never checked. Will do. Great call out.

Hi Atex, I’m facing a similar situation with my almost 5yo son. We are also at the beginning of the journey, trying to understand more about this condition, triggers and natural treatments. We had a neurologist appointment today and it was disappointing to say the least. He basically said there is nothing to do unless I want to put him on meds. This forum has been very important for me as well. I hope the 6 months protocol can help your daughter and that soon your new update will be that she is totally tic free 🙌🏻 Tiara

Thank you so much for replying Sheila and Swetha! I’m feeling so overwhelmed those days that just by the fact that someone has replied makes me feel less lonely in this path. I am not normally an emotional person, but this tic issue has got me like nothing before. Specially during the evenings when the tics get worse, I find myself avoiding to look at him and wanting him to desperately go to bed so it will finally stop. I feel guilty and hopeless all together. Sheila, we do have insurance. I took him to the neurologist and the result was the same other moms have anticipated. The doctor basically said it was a tic disorder and that there was not much to do other than medication. I was left with nothing. I would love to hear your suggestions for professionals that use an integrative approach. By the way I bought your book, it arrives today. We need help and a starting point. I live in Miami, Florida, but we could go anywhere really. I truly appreciate your offering to connect with us. What is the best way for you? Over the phone? Swetha, the relations you made between chlorine and glutathione is very interesting. All the recommendations are very useful. I will start them today. One thing that I would like to understand more is about the frequency of the tics and if they change. My main concern is the current severity of my son’s tics, specially because it’s very noticeable and he is already self aware at age 4yo. Yesterday I took him to a playground and he said he did not want to go because other kids would “see him”. It destroyed me from the inside to see him ashamed of himself at 4yo. How it was for your son? Is he doing better with the tics now? Again, thank you both!!

Has anyone had a son that started very early with complex non stop severe tics? I’m very worried about how early he is presenting symptoms and that those symptoms are so severe at his age. I guess I’m looking for someone else who had a similar experience that I can relate. I’m looking for reassurance and so hope. My son is 4yo and has started ticking when he was 3yo. It started very mild with blinking that turned into excessive blinking for a few weeks. Then it disappeared. At the time the pediatrician said it was a natural development tic that would most likely go away as he grows. About 6 months later, we went on a family trip where he spent most days in the pool. The day we returned the blinking returned, more severe. Now I know it was most likely triggered by chlorine. This time the blinking took about a month to go away, and disappeared completely. After three months, a new tic appeared. This time much more severe. He started eye rolling to the left side in a movement with eyes, shoulders and head all together. It took a few days then got better. Out of the blue, this week he is in a major tic crisis. The eye rolling with shoulders intensified to a NON STOP tic, that led to other weird movements with his head and shoulders. Sometimes he rotates his head 360. it’s very scary to watch. He really does not stop. It’s not that he does that every few seconds. He is actually doing the movement repeatedly. I would greatly appreciate the sharing of relatable experiences. I’m so worried. Thank you, Tiara