logismum
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Posts posted by logismum
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My son has mainly been a vocal ticcer and we have found the kids to be really understanding, The teachers had a talk to the class about what tics are etc. The only time i've kept my son at home was when he had the full high pitched screaming tic, There was just no way i could send him with that one.
Once people have knowledge and understanding we've found that they are really accepting and i hope you and your son find the same.
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Cara if it works better for you and your son to take it slow then theres nothing wrong with that. At the begining i just completely freaked out and removed everything except the dairy as my son had milk and yogurt everyday, I did the swap over/removal of that much slower.
In The past My sons eating was so bad i literally had nothing to feed him for dinner most nights except bread and tacos . We even went to numerous eating groups for kids at our local community health centre, he was really that poor of an eater i'd have to take foods he did eat everywhere we went because there was nothing he liked when we were our and about. He ate the same things everyday every year with only small changes here and there. Now it's completely different it just takes time
I just started googling for recipes and found so many blogs and websites of families with allergies or who just chose to eat clean. It really helped as i was struggling to find anything at the supermarket that didn't contain crap!
I have no knowledge of NAC either sorry so i can't help with that one.
Just take it one day at a time
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Thanks Chemar
I wish i could get my son to take the Candida clear but he won't swallow capsules and he won't take them opened either
I've just got him on a maintenance dose of the product we did a course of before. I'm hoping when i have a phone appt with the Enviro Dr he will want to look into some proper testing for Candida/Leaky gut. Waiting on results for Pyroluria, Strep tilters and other levels as well as heavy metal results first. He has coconut oil, raw garlic and raw honey every day so i'm hoping thats all helping.Was your son able to eat foods that he initially avoided for clearing the candida and if so about how long after?
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Cara I also had to remove myself from one of the fb groups thats i was on. I couldn't read the posts anymore. I coudn't relate to many on it as they were jumping from one med to another and not interested in any other idea's which is fine if thats what they choose but it wasn't/isnt the path we are on. Also my son doesn't have any co-morbids that most of their children had so i coudn't relate to posts about 'rages' and behavioural issues etc. Don't feel bad about it, You have to keep positive energy and thoughts and do whats best for you and your son.
I think i've mentioned before my son was also one of the fussiest kids ever! He didn't even like things that other kids usually did like party pies, sausage rolls, lollies etc but after we started the diet changes and healing his gut it's like he is a different kid. He is so willing to try new foods, He eats all meats for the first time in 6years and i actually have some meal options that i can at least hide vegies in! My son did initially drop some weight when we first changed his eating and it worried me as he was/is small for his age but he quickly put it back on when his eating improved.
One thing my son loves is garlic bread so we do our own version on gluten/yeast/dairy free bread every morning. I rub lots of raw garlic on the toast and then smother it with coconut oil.
I also slowly took my son of dairy by first changing to lactose free milk then doing half/half with rice milk and now he fully has rice milk and i intend to do start making almond milk for better nutrition. I had always thought dairy was a big no no for ridding candida?
Stay strong and keep going
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If you search Nystatin in the search function there should be a heap of posts on it. With everything i've read on it i decided not to use it but then again i didn't have a Dr helping us that i could get it from anyway. I chose to use a natural/herbal product for my son, I would have liked to try the candida clear by NOW but couldn't get him to take it. We also did and still do pretty much follow a anti candida diet.
My sons worst was really just vocally, The high pitched screaming and very loud "Ah" also yelling "Yes" and "no" and using words out of context etc. Motor wise he never had any complex body movements. We had some light head shaking, reaching out his arm or raising it above his head, Feeling like he had to lick things plus more but none very severe. I really started changing things though within 2 weeks of his tics being very present so i imagine they could of gotten a lot worse. So thankful i found these forums in my searching
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I've read a lot about PANDAS but thats as far as my knowledge goes as my son doesn't really fit any of the symptoms/behaviours etc and i'm not sure if he has ever had strep before but our enviro dr is doing tests to rule it out.
If your son has had strep before i guess it's a possibility but best to post over in the PANDAS section as those ladies know there stuff
Good luck and let us know how you go
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Hi Cara sorry to hear your son is having a rough time at the moment with his tics. Has anything changed in his diet, or new vitamin addition or is he unwell etc that could have bought on some new tics? We didn't have instant or even constant inprovement until just recently. We had days were there was really such little ticcing that it was like he never had them and then the next day it was back to multiple. It really only starting to even out the more we worked out what some of the issues/triggers were for my son. I don't think you could really predict what his tics will be down the track, I thought my son was only going to get worse or at least stay the same but now 6months on i'm feeling better about it all.
What are you currently trying atm?
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No worries
Also keep in mind that even though some foods etc may not show up on allergy/intolerance testing they still may be a tic trigger for your child. So keeping a bit of a food diary as well or notes on the day and if there was something different eaten can really help identify other things. Yes antibiotics will kill almost all of the good bacteria and unbalance the gut so an anti-fungul may be helpful.Also have you read up on PANS/PANDAS to see if that may be a factor for you son?
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Also maybe come over to the TS section and re post there so more people can see your post
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I'm no expert at all this as we are only 6 months into the investigating journey for my son but just wanted to say hi and it sounds like you are on the right path with looking at allegies, diet etc. We also do all this and are waiting on heavy metal testing results as well as others.
Glad there's been a 50% reduction for your son so far, My son had slow improvement over 5 months but his tics really lessened going into the 6th month. Gut issues take time i think to heal especially if Candida/leaky gut is an issue. Just wondering does he avoid corn? ( As i noticed you mentioned popcorn) Corn seems to be an issue for a lot of people.
Hopefully someone who has been on the journey longer will be able to help out
Take care
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Crunchfly that is really really interesting!
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For us gluten is an issue because of candida/leaky gut and milk and food colours seem to be the triggers for vocal tics in my son, Ds was a huge carb eater along with processed sugars and milk! Since eliminating all and more it he has had much improvement. He surprisingly dealt with all the changes well and he is 6, He also eats so much better now than he ever has, almost like his body suddenly craves totally different foods.
Good luck
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Well i thought anxiety was/is/would be a trigger for ds but i'm not sure now as it was his first flight ever and at first he wanted us to drive as he wasn't keen but ended up loving it.
Also just got back from taking him for a blood test, We had crying and screaming just before they drew blood then he was all good and nope no extra tics before or after. He can also fight or be annoyed with his 4yr old sister or get in trouble which isn't often and be put in time out and it doesn't bring anything on tic wise either. Very interesting.
I'm glad it's getting easier to identify triggers now instead of thinking it's everything!
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Ok so i've been thinking (too much as usual
)When all of my sons tics started snow balling at the start of the year and when i was trying to work out triggers etc i felt like almost everything that was increasing his tics.
However now that things have been steady for around a month with minimal to mild tics i have noticed that -
Watching tv does not make him tic more
computers or ipads, ipods do not make him tic more
Even being extremely tired doesn't make him tic more. For example our trip to the neurologist we woke around 4:30am took a plane flight, Walked around the entire day, took cab rides, went to appts, waited around at the airport and finally flew back home at 7:30pm and he didn't fall asleep until 8:30pm and that entire day there were no extra tics! I know i was dead tired and you could see he was utterly pooped too.
Talking about tics doesn't make him tic more either.
But being hungry appears to make him more vocal - Could this be due to gut issues?
Colours/preservatives and milk def make him more vocal - learnt this again after a birthday party the other day and he had cake with bright red fondant icing!!
It's making me start to think more and more that his tics are a result of allergies, intolerances, gut issues etc so how do we ever know if the dx of TS is correct or not and i guess does it really matter as long as we find out what works for him in minimizing the tics and getting him overall good health?
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i have his book feast without yeast and the other one with recipes and use the recipes from them
and yes we have pretty much been on stage 4 since before i even got the booksI don't have candida/leaky gut diagnosed though for my son through any tests so i can't use Nystatin but i personally wouldn't anyway given what i've read about it. We use a natural product though.
Glad someone else found his books interesting
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Hi hopeful2
I never ended up giving it to my son as my gut feeling was not too and thanks to researching the product and answers on here. I ended up going with a multi from thorne research as well as an anti fungul for candida and a probiotic. My son is doing really good atm and has been steady with minimal tics for about 4 weeks. We have been gluten, colour, preservative, yeast free since January and he has also been dairy free for the last couple of months and egg free for a few weeks now.
We have also since seen and evironmental dr who is doing some heavy metal testing, blood tests to check important levels and check strep tilters as well as a test for Pyroluria.
Getting there slowly i think, Thank you for your advice
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Will def do the search and read up more thanks, I'm getting hubby to read about pyroluria atm from a google search as so much of the symptoms etc sound like him! and he also has low B6 so we recently found out and he has anxiety/panic attacks/depression as does his mother and aunty. So will be interesting to see what the test results say for our son and would like him to look into it for himself also.
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Thanks Chemar
Fortunately i was recommended the Neuro we seen by others who were very happy with him and he was really lovely. He said he doesn't believe in giving medication soley for tics but if other factors like ADD OR OCD are the biggest issue then he is happy to trial medications if the family wants to. As i already thought my son has mild anxiety and the Dr does want me to keep an eye on it and watch out for any OCD or intrusive thoughts that may creep in down the track. I didn't bother mentioning much about what we are currently doing etc as i knew we were going to the Enviro Dr for that. We don't have to go back and see the Neurologist and he did give us a TS diagnosis based on the last 2 years of tic documenting. We got what we went for but it doesn't change anything!
The environmental Dr was good, He wants to get a blood test done to re check my sons zinc levels as he said the test i showed him that was done a while ago was incorrect and that my son is low in zinc. He sent DS for a urine test for something called pyroluria? due to so many of our family members having anxiety and or depression. He also wants to rule out PANS so is getting strep tilters tested within the blood test, I have read alot about PANS and PANDAS but its all really confusing and didn't feel my son has it but good that the Dr wants to rule it out i guess. We didnt talk much about diet etc as i don't think there is much else i can change in that area lol. We are also doing the hair test for heavy metals as we lived in a extremely mouldy house for 2.5years and also have until recently always lived on very busy streets/highways.
I feel like we are on the right path
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Tomorrow we fly down to our captial city for a Neurologist appt and an appt with a Environmental Dr
For the Neurologist i have all my (messy) diary notes, A list of tics my son has had that i've noticed starting back in 2011 and also 3 recordings on my phone of him ticcing that he didn't know i was taping. Is there anything else i should have with me or anything specific i should be asking?
Now for the Environmental Dr i have filled out the paperwork they wanted and am taking the last blood test results my son had as well as the biomedical hair analysis results. This is the appt that i'm most excited about but i'm not really sure what i should say as to why are we going to see him. Would you just say we are here because my son tics? Of course we are hoping to investigate gut health, allergies and all the other things. I'm a little nervous and the appt isn't cheap , It's actually more expensive than the private neurologist so i want to make sure i get what we need to from the time with the Dr.
Have i missed anything important that i should be doing, asking or taking?
Thanks
Vanessa
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Very glad to hear things are going well with the NAC Cara, Hope it continues for your son. Look forward to more updates
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Thanks for the suggestion cara615 i will take a look at it
I've decided just to let things be for now as he is doing well and FINALLY we fly to both the neurologist and eviro dr appts next week! Hopefully more answers and a clearer plan then.
I also tried the family on some salmon last night and my boy loved it! So hopefully now we can have more fish in his diet on a weekly basis.
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good to know about the multi having good levels, Thanks.
The last time we tried fish oil i thought he reacted to it badly with the screaming tic but now i'm thinking it was possibly the lemon flavour in it seeing as lemon came up as not good for him in the hair analysis test we did. I also had tried flaxseed oil but abandoned that also but then a few weeks ago started using flaxseed meal in cooking and noticed a tic increase. It then came up in the test also that he is not good with flaxseed in any form. Fish oil capsules came up ok for his body.
I'm thinking a pure fish oil in the right epa/dha combination might be worth a try again. Does anyone have a good one they use?
I have been telling myself just to wait so maybe i should!
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I have DS 6 on the childrens multi vitamin from Thornes research (thanks chemar) He also is having a anti fungal and dairy free probiotic to balance out the gut. He is doing good tolerating these. We are still doing all the dietary and environment changes also.
I know he most likely needs other things like other B vitamns, omega's, taurine etc but not sure what to introduce next if anything, any suggestions on what step you would take next?
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Thats ok thanks. I couldn't get him to have the candida clear anyway as he can't swallow a capsule yet and he wouldn't take it opened up and put in water like he does his multi. Will just contiue with the diet and the product i'm using and he seems to be doing well with the non dairy probiotic i have him on.
I use organic coconut oil on and in any baking i do so he is getting a good amount of that i think. he even has raw galic rubbed/crushed onto gluten/dairy/yeast free bread with coconut butter/oil smothered on top every morning lol he loves it!
He is going pretty good atm, I'm just being impatient waiting for the visit with the environmental dr.....Hurry up June 5th
I've just got him on a maintenance dose of the product we did a course of before. I'm hoping when i have a phone appt with the Enviro Dr he will want to look into some proper testing for Candida/Leaky gut. Waiting on results for Pyroluria, Strep tilters and other levels as well as heavy metal results first. He has coconut oil, raw garlic and raw honey every day so i'm hoping thats all helping.
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Question for those that have found relief
in Tourette Syndrome and Tics
Posted
Have been wanting to ask those that have had success in reducing tics for their children or themselves. At what point did you feel like or say you had success, Was it when tics got to a certain level and then stayed there for a period of time and what time period would you class as having success?
While my son is doing quite well and minimally tics compared to where he was at i guess i'm scared that it might not last forever, At what point do i say ok this has been his level for x amount of time and therefor we've successfully found relief for him?