logismum

My son had almost 2 years of only a couple of tics, Eye stretching and mouth opening and not continuous. Then in January this year vocals started and rapidly became full on and then more and more motor tics started. Although none were very severe or complex the list definitely grew very long in only a couple of months. We are now back down to very few, mild and infrequent tics. So yes things can move that fast.

Oh gosh lol i didn't even look at when it was first posted.. Thanks Chemar

My son has low zinc but unsure of his copper level, I would assume it was/is high as he was recently diagnosed with Pyroluria so wll most likely be on zinc plus other supps for life. Have you looked into getting tested for that although your sons is the other way around ( but then I think in hair analysis though if copper is low on the hair then too much is being held in the body? I'm sure i read something on that but not 100% sure). My sons ferritin level was boarderline so is on a iron sup. Taking extra zinc depletes iron though so he needs it due to taking higher zinc doses compared to someone who is not Pyrolle.

It won't help for everyone, It helped for my son but thats most likely due to the fact that he had gut issues and people with Pyrolle do better on gluten/dairy/additive free diets.... it's all trial and error i guess. msimon3 did i just read your child ended up having Lymes disease? Which most likely meant no matter how clean the diet was it wouldn't have helped? I def think it's important to rule out any underlying conditions too

I'm agreeing with what the other ladies have said re gut health etc at least this was really important for my son. we did a anti candida diet and anti fungal and now do a daily probiotic. It's good to look into every area of health that you possibly can. My son also has issues with having heavy metals present so we are currently slowly removing them. so i'd say def investigate - Allergies and not just food ones - Intolerances - Gut health - heavy metals - Any other possible health issues ie pandas/lyme (for my son we found out he has Pyroluria) My son is also colour/additive, gluten, Cows milk/butter, egg and corn free as well as some other things. His tics are also 95% improved since they came full on in January this year. His sister just said to me yesterday "Remember when Logi had tics?" I thought that was a good indicator into how much things have improved. Really only i notice the ones he does have as i'm looking/documenting. I highly recommend getting Sheila's book if you haven't already read it. Amazing info on getting the investigating happening and some really inspirational stories! Best of luck

Thanks Chemar he does have almost all of those foods and i didn't realise they help so i might just have to try getting him to have more of them. I was worried because he was looking really thin the last few weeks but i realised and took a photo of him and his sister back to back (he normally is only about an inch taller than her and she is 2 years younger) and he is a full half a head taller than her now so i'm assuming he had a growth spurt hence why he is looking thinner! He weights 18kgs the same as her though....

Anyone at all? Especially looking for one that doesn't contail Maltodextrin from corn!

Hmmm on all my crazy research i haven't read that about almonds/flour?. My son has it on a daily basis as it's a great gluten free substitute as well as good in calcium.

Same for us here to with DS 7 as Cara and my2sons When i looked into bontech i did read that initial worsening can happen. I think bontech suggests not stopping for 3 months? Then evaluate how things are. Hopefully October appt brings lots of answers for your son. My son hasn't had the blinking tic before which i thought was odd giving the list of ones he has had so i can't help with an answer for relief on that one sorry but sounds like you are already implementing some good things like the epsom baths . Hope relief comes soon for him

To be honest i haven't gone to the school principal where my son goes, He started there at easter time and had some vocals still so his teacher (She was and is awesome about it all) knows but i feel very blessed that he has no other issues besides mild anxiety that mostly relates to being in the dark/alone and animals so doesn't affect his schooling, He loves school and is doing very well. I must take the neurologist letter to the pricipal and have a chat with him because i do want to make sure all the teachers know about TS incase my son doesn't have continued improvement. I've been slack! Sorry i can't help out with actual experience wise. Sounds like you have a good plan of attack though, Best of luck and hope your daughter gets the understanding she deserves

The Australian website has a great you tube video link too for teachers to watch and explains how it affects learning, concentration etc Have you seen that one on the TSAA website? You can also order pamphlets, books and other things from them too. I would be raising until they do what they are supposed to be doing, Can you take it higher in the education system to get things moving? Good luck

I have asked some questions in another group i'm a part of but thought i'd ask here too. Does anyone use Digestive Enzymes for their kids? I keep seeing them mentioned when i read about gut issues as well as for Pyroluria. Wondering if they will be benificial for DS 6, I will talk to our bio Dr but next phone consult is not until October. We've done anti candida diet, anti fungal, on probiotics etc, eating much better than he used to but he just doesn't seem to put on weight. I can tell he has finally formed some muscle tone in his legs which i'm guessing is due to him now eating protein etc but i just can't seem to get his weight up....He's always been small. Would they be beneficial and are there any side effects or anything to worry about and what have others used? Thanks

and it would seem that now it's broken through the skin his tics have gone down some, They didn't raise all that much in comparison to when his tics were full on but because he's been almost non existent in vocals for a bit now i probably noticed more. He hasn't lost any teeth yet so i will watch out for changes when that happens!

Ok yep now i understand, Thanks. I worked out why he had a headache and didn't want to eat, He has had a back bottom molar cut through the last few days. He says it hurts to eat not his throat that is sore. He's terrible at telling me when he isn't feeling the best because he never wants to miss out on anything, Kids hey!!

Unfortunately i have no dr locally that could send us to get a strep swab, At least i don't think they would, Our enviro dr is 8hrs+ drive away. Is it all done the same in australia at places where you just go for blood tests etc? When he had his strep tilters done that was part of his blood test, Is that something different? He doesn't have a fever just general cold symptoms. It's our winter here so every second kids is coughing and has a runny nose unfortunately but i do agree sick kids should stay home i shouldn't have let him convince met to go, he just loves school soooo much!