Posts posted by Sheila
Hi JRog, Welcome to the forums. I'm so sorry you are dealing with tics that also are accompanied by obsessions and related anxiety.
It does seem like you have symptoms of Tourette's since you've had the vocal and muscle/motor tics over an extended period of time.
Some people have tics and OCD that are triggered or made worse by an infection. Often it is a bacterial infection, but it can be viral as well.
Does the anxiety go away as soon as the cold disappears--like within two weeks? Or, does it linger on?
Have you noticed anything else, besides a cold, that can affect your symptoms? I look forward to reading your reply.
Hi Jacke, Welcome to the forums.
I'm sorry your son has dealt with tics. I hope he is has been improving? As for vaccines, there has not been much research on it. We have a summary in this article. https://latitudes.org/vaccine-research-thimerosal-tics/ It primarily connects thimerosal with an increased incidence of tics for some people. Relatively recently, the preservative has been removed from most (although not all) vaccines. We do not have information on a specific vaccine that might be related to tics.
I hope this is of some help to you.
Hi Katreya, and welcome to the Forums. So sorry you and your family are dealing with this. Your son sounds like a wonderful boy. I'm sure it's very hard for him to feel like his body is out of control.
Does he have a history of allergies - or have you noticed chemical sensitivities? Does he have a history of any digestive complaints?
It sounds like you have made some good efforts. You may need some professional support as well. Are you in the UK?
Your boy could be triggered by chemicals, in a swimming pool and/or elsewhere. It's not easy to focus on a single environmental aspect, if indeed those factors are playing a roll.
I don't know if you have been communicating with him about his tics, but sometimes it is helpful to refer to them as allergies and you could ask what seems to bother him, using this chart http://latitudes.org/downloads/triggers/kids/what-makes-me-tic.pdf You would know if you think that might be helpful.
Sometimes it is a relief for kids to know that it is something causing his body to do things he doesn't like -- and then you can work to make changes to help.
This would be an environmental approach, not that it is the answer for everyone. But since you have seen triggers already, it could be that this is moving in the right direction.
I would suggest you please keep a log. You can find one here, if you are interested.
I hope this helps. . . best wishes to you, Sheila
Thank you for posting both those books, MaryAW I hope your mold detox goes well.
Here are links for the two books on Amazon
Break the Mold by Dr Jill Crista
Toxic by Dr Meil Nathan
Hi AlwaysWorriedMom, I'm so sorry that you haven't had the responses you need to your questions. I don't know if the reason is that they don't have the specific answers, or that folks are not on the Forum right now. A lot of people have joined Facebook for PANDAS/PANS. Did you ever join a group that you can connect with?
I know it feels discouraging to not see responses coming in, but it's not personal! I would give advice but it's outside my area of expertise. I wish I could help.
Do you live in Ontario?
I'll watch for a response. All the best, Sheila
Hi ab1988.Welcome to the forums. It's encouraging to read in your post that the facial tics have diminished, though it's hard for you to know why.
You said you've read a lot on the forums. I'm not sure if you have seen the website articles also. Have you tried any other interventions yet? It an take a multi-faceted approach to subdue tics. Here's an example of what one parent did, It represents a number of different concept that parents have used. Not everyone does all of them, of course.
It's interesting that the facial tics are coming on in the evening when he's wearing glasses. Why is that the time he wears glasses? What is he doing at the time?
Just for you to be aware -- and there are certainly no simple answers for everyone -- exposure to toxic chemicals, from pesticides to formaldehyde to scented products--are known to cause vocal tics in some individuals. Allergies can do the same, including mold.
There are approaches that may be helpful without your boy feeling like you are dragging him to different doctors when he is not very aware of his tics. That said, it doesn't sound like he's been to a lot of docs so far--but it does seem you may want to change your pediatrician!
Please let us know what you think of the linked article above and whether you see any aspect of it that resonates with your situation, okay?
Also, you might want to post in the PANDAS/PANS forum for feedback.
Those are really good insights, MLee. If you have time, please let us know how your doctor has you addressing the gut issues.
FraggleRed, it's wonderful you had good results after your significant efforts. It's so great the nightmares, joint pains and stomach pains are gone also! It does take perseverance, as you say. Thank you for sharing your encouraging message.
Kuma --I'm glad you have a referral to an allergy clinic. (And don't forget to check for milk, after the milkshake reaction --if that was indeed the actual trigger at the time and not just a coincidence). It can be so helpful to have some professional help in sorting things out. And remember that if needed, approaches can go beyond diet. I hope you'll keep us posted!
Hi Kuma, welcome to the forums. I'm glad you wrote. I know it's really hard to watch your child go through so much. 🙁
It seems you've seen some connections with foods at times, and have tried different adjustments.
Could you please let us know what diet he is currently following?
Also, do you have a family history of allergies? Or of sensitivity to chemicals, like perfumes or gasoline smells--more than typical?
I'll look forward to hearing back from you.
Hi Emmars26, welcome to the forums. I'm glad you seem to have zeroed in on likely some key underlying causes of your daughter's difficult symptoms. I hope you can let us know what testing shows.
I was not familiar with DNRS for neural retraining https://retrainingthebrain.com/ The testimonials are impressive and it would be good to learn more. I did a search on our forums and didn't see specific reference to it. It would be interesting to know what your doctor's experience has been with patients referred for DNRS.
We are glad you wrote, and wish you and your family all the best in healing your daughter.
Nursemom21, its definitely good that you are seeing a PANDAS neuropsychiatrist for these types of symptoms. Please let us know what you find out. I know everyone will be interested to know. It's too bad you had to wait so long, but hopefully new answers will be coming. Sheila
Hi NurseMom21 I hear your major concerns about your daughter and realize it must be very hard to deal with. You have my sympathies.
Meanwhile, I would not focus on the 12 months for TS, or various tic criteria in general. Even researchers admit that the delineation between different categories of tics is pretty arbitrary, and there is ongoing discussion to change that approach.
I saw your recent post that said you are seeing a PANDAS neuropsychiatrist this coming week. That should be very helpful. As I mentioned on that thread, please do let us know what you learn. All the best, Sheila
Hi OutoftheFryingPan -- First, my sympathies for the major symptoms you have been dealing with. But also a big pat on the back for your dedicated efforts that have revealed some key food reactions in your son. As you say, it's not easy to track details but it can be very valuable. (Loved the comment on neat handwriting!)
It's also great that your son admitted to the toffee and gummy bears! Otherwise, the mystery can make us moms and dads so disheartened and worried. I used to feel sick to my stomach when I couldn't figure out what was going on, and so relieved when the answer was revealed. It's also a chance for children to learn from their experience, though no one would wish those severe reactions on anyone. Your milk observation is excellent also.
One note-- in addition to the sugar connection you saw with his "sneak" foods, please also keep an eye on the colourings and preservatives as mentioned with the the gummy bears. It sounds like you are already doing an amazing job with monitoring and preparing food, so he may not encounter them often. But a little food coloring or preservative in even non-sugary snacks like in chips/crisps can cause similar extreme behavior in hyper-sensitive kids. It would seem your son falls into the category of "exquisitely sensitive." That does not preclude his healing.
I just looked the black pudding up on the computer. As a vegetarian I was not familiar with it. (No comment! Ha. I know it is popular in the UK and many other areas).
I hope your session with the homeopath goes well. One area to target is the health of the gut in general, to hopefully reduce food reactions.
We will watch for more news when you get a chance. Thank you again for your posting -- and for your love, which we return to you! 💗
Hi Ourofthefryingpan--Welcome to the forums. I'm sorry to read about the very difficult time you are having with your son. I can only imagine how distressing this major increase in tic severity has been. Is your current doctor going to consider PANS soon? That is something that is best caught as soon as possible, if it is the case.
Has your son had an infection of any kind that you are aware of?
In addition to whatever underlying imbalances may be occurring that the doctor could uncover, it might be useful to think through what else might be going on. Please drop me a note through our contact page if you would like to brainstorm. https://latitudes.org/contact-us/
Wishing you all the best! Sheila
Hi to NurseMom21, I'm so sorry to read all that you and your family are going through. Yes, others have experienced rapid development of tics, and there can be different causes. What you have described does not sound like a typical transient tic.
When major tics (and/or behavioral or emotional change) start up quickly, it it can often be due to an infection or a significant environmental exposure that is causing inflammation in the brain.
When you mention testing that was done, did they indicate if results ruled out PANDAS or another type of infection?
I would suggest looking further for the cause(s) as soon as possible. I would like you to please contact me through the Latitudes.org website which is https://latitudes.org/contact-us/ so I can learn more and we can discuss options. (I'm not a doctor, just to brainstorm with you for next steps.)
Wishing you all the very best, Sheila
Hi -- we really appreciate this detailed report and it's heartening to know that you've found some answers for your daughter. I especially appreciated knowing what Environmental Health Center of Dallas. I wasn't sure how things were proceeding after their founder. Dr. Rea (who was on our advisory board) passed away. They were always excellent for mold issues plus so many other environmental issues. I applaud you on moving out of your home to get here way from mold, and you've seen an improvement. I can imagine a rotation diet would be too much to try in someone else's home without a functioning kitchen!
I imagine your doctor would have warned you about renovations where you are staying -- hopefully they will be nontoxic, with non-VOC finishes etc.
Please do keep in touch. We can all learn from your experience, in addition to being able to celebrate any successes.
Hi Always Worried Mom -- I hope you have a response soon. You have a complex post (as many PANS ones are!) and we know a lot of parents are maxed out trying to deal with virtual learning.
If you would like to explore approaches that we often recommend for tics, please drop me a note through our contact page on the website https://latitudes.org/contact-us/ Let's hope you find some good answers soon, Sheila
Hi usernamecat, I know it's so hard to limit screen time these days! Schooling often revolves around it.
I'm sorry, I hadn't noticed your question about the environmental allergens. So much depends on the situation. Some sensitivities can improve with time and avoidance. And some allergies may improve with age especially if the immune system is strengthened. Of course, treatments can also reduce the response. But if someone has a mold allergy, for example, and they continue to live in a moldy home, their symptoms can be expected to be aggravated. The classic approach is "avoidance, avoidance, avoidance."
By limiting exposures to some allergens and aggravating agents (like scented products), you can often lessen the reaction to those you can't avoid.
I'm wondering -- what did the pediatric chiropractor find or suggest? Hope you can find time to reply.
Hi -- How did your follow up session go? I had never heard that a deviation in uvula is connected to neurological issues. This could be a clinical finding that your chiropractor has noticed or something more widespread. I saw a bit online about a possible connection to the vagus nerve. It would be interesting to learn more. Maybe you could ask him for more details on this, if there are any case reports he could share.
Did you do the allergy test? Please give us an update and let us know how things are going if you get a chance.
Hi Kate424, I'm really sorry I missed this. Have you been able to find any help for your son yet ? If not, please write to me through our contact page
https://latitudes.org/contact-us/ We can arrange to connect and hopefully find what you are looking for. All the best, Sheila
Hi SharingSheryl--I loved that: I am totally freaked out by it and my husband is totally not! Hah. That's not unusual, though sometimes the roles are reversed. It must have been a serious bout if you took her to the ER.
I sympathize with all the family stress over work and am glad it sounds like you were able to stabilize things. Meanwhile, so many parents are frustrated with the reliance on screens these days. Great that you have reduced computer and phone time.
Please let us know if you have seen any change with the allergy-free diet you started a few days ago.
When you say you relaxed the diet this last year, was that specifically for gluten -- or for gluten and other foods and maybe additives that you had been avoiding?
We have definitely heard from people who had a child with tics that included breathing issues, and the ones who contacted us were able to resolve the issue. There's not a single approach that worked for everyone. But you seem to already have some food-related clues from when she was an infant--and your daughter says she does not have trouble actually breathing.
You've been to the ER and had her checked out, and the chiropractor suggested a gluten reaction. Unless things worsen, it seems it would make sense to focus on foods (keep a log and you probably know that something like gluten can take time to clear the system). Can you go back to what you were doing a year ago?
Also reduce the allergic load in the home. Has anything changed in the home environment in the last year?
And please make sure that you do not have scented products in the house, from cleansers to deodorizers and personal products. Go natural. Does she have exposure to pesticides or chlorine in swimming pools these days?
To answer your question, all doctors can be expensive if you don't have good insurance, and that includes environmental physicians. Why not do what you can on your own as soon as possible, and watch to see if there is improvement. Then take the next step if needed. We will look forward to hearing back. Good luck with your efforts!
Hi usernamecat, welcome to the forums. I read your account and really sympathize with what you are going through.
Many of us on this site also had the tears and emotional response you are having. The good news is that many of us also found answers. I can't make any promises but the fact that you have allergies in your family is actually encouraging. Both physicians and patients/families have reported that tics can often be more like an allergy of the nervous system than what we would think of as a neurological "disorder."
We have an article that will give you an overview of the new thinking for tic conditions (not necessarily shared by mainstream medicine- -- though it is good you are seeing a neurologist ) https://latitudes.org/conditions/what-is-tourette-syndrome/ Don't be concerned that the title is Tourette syndrome, you have said your daughter may have a different diagnosis. The article addresses tic disorders in general.
Please read it through and see if any of it "clicks"" for you, OK? Also, at the bottom of the article there are several links to reader-friendly articles that you might like. I thnk they would be helpful.
Try not to despair, there is often help for these cases. The goal is to discover any underlying the imbalances, and to learn what may be triggering the symptoms that your young daughter is experiencing. Hang in there--all the best, Sheila
Hi Deb22 -- and welcome to the Forums. I agree LNN had some great suggestions.
Just to let you know, we've received many reports on mold as a trigger for tics, as well as it causing other health issues plus behavior/emotional reactions. We hope you will keep in touch, letting us know how you make out and what new insights you come across as well. Best of luck!
Hi MLee, So sorry to read about your setback. You should be able to get back to where you were soon. I understand food reactions can sometimes take 4 weeks to clear, but no doubt there's no hard and fast rules, so hang in there.
Have you tried giving your son an antihistamine to see if it helps? If you do, please let us know.
Also, some doctors recommend drinking baking soda (or trisalts) in water to help food reactions. Trisalts are on amazon--not expensive. Now that the initial period has passed I'm not sure how much effect it would have, but it is worth a try.
Because he had avoided eggs for so long and then had a significant repeated exposure, the reaction is not unexpected -- though I know it's super discouraging. That said, I don't blame you for trying!! Scrambled eggs are so convenient--plus now you know what the limits are for sure.
Please let us know how you make out. Will be thinking about you both!
NOTE-Product Discontinued! (Our experience with Repreeve)
in Tourette Syndrome and Tics
This approached reportedly helped a small number of people (it functioned as a form of acupressure). Since it was free, we left it up. However, the product has not been available for some time, so we will lock this thread.