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!

Ok so i jinxed us by saying the other day that DS has hardly been sick since January, The last time he had flu like symptoms which was months back was after i started anti fungal so i think that was die off. Yesterday arvo he started with a cough and has a sniffly nose, He says he has a bit of a headache and is a bit off his food. His throat does look a bit red too. Both my kids have huge tonsills. He's got some vocals back now since yesterday afternoon, Not constant just every now and then. A bit of a giggle/laugh the 'AH' one is back and variations of it and some other noises. Would it most likely be because he his feeling a bit off? and do your kids tics usually go back down to their base level once they are feeling better. He insisted on going to school! I wanted him to stay home and rest. It also didn't help that yesterday a child in his class had a birthday so there were cupcakes :/ today i've taken a homemade gluten and dairy free cupcake for him to have as there is another birthday!

Just popping in to say Hi I'm also from Australia and have found these forums so amazingly helpful in investigating my sons health. Feel free to PM me if you want.

Don't feel bad Cara we do the best we can with the knowledge we have at the time. I did the same for my son in fact i was told by our community health to give my son more and more milk and bread to bring his weight up. He has had so many ear/throat infections over the years. Since going dairy free for most of this year not only has he not had any ear infections since end of last year he hasn't been sick at all apart from a bit of a snotty nose because it's our winter at the moment! Every other year he would have been so sick all the time. The clean eating and gluten/dairy/colour and everything else free has just been amazing for us. Keep going

Oh good!! Thank you so much for the info and for the warning Truely appreciate all your help

Chemar is that what glutathione cream is ALA? I'm worried about using it now especially on a 6 year old. The testing was done over 4 weeks ago so do you think his levels would have dropped since then as we have been giving him zinc for the 4 weeks since and continueing with epsom salt baths etc. Is Chlorella chelation something i can do on my own for him first to be safer? I don't know what his usual treatment is either. I def don't want any Mercury going to his brain

Just had a phone consult with our eviro dr that i took DS to on June 5th (8 hours from us so we couldnt travel again) and these are some answers i got Scored 16.6 positive for Pyroluria so he says mild case of this Strep came back negative in the blood testing Blood tests showed low iron, DS has always had low iron so he wants me to get a product called ferro liquid DS has been on this before and didn't have any complications back then that i noticed so i hope it doesn't bring on any new tics.... Heavy metals hair analysis showed: Highly elevated levels of Aluminimum, Lead and Mercury. Dr is most concerned with the lead and mercury as they are highly toxic? Also raised levels of nikel, silver and tin ^^ this all scares me Action plan he has for DS is continue with zinc suppliment, Adding in a childrens multi called 'multi care' its a powder 1 teaspoon a day. I haven't looked up whats actually in this yet so i hope its ok ingredients as they are sending it too me. Adding the ferro liquid for iron Also to start using a glutothione cream? every night on the arch of his foot for ridding the heavy metals. Has anyone used this before? He said his usual treatment for heavy metals is currently unavailable but we can apparently do it using this and other nutriets like the zinc etc. We are to have another phone consult in 3 months to see how DS is going re: anxiety, general heatlh, tics and we will re do the hair analysis then. Any thoughts or opinions appreciated, I'm glad i got some answers about his health but am feeling a little overwhelmed :/ Vanessa

I may be wrong but i'm sure Chemar has mentioned before in one of my posts that magnesium oxide is the most poorly absorbed so not sure it would be much help. Hopefully someone comes along with more info

I got his dad one of their multi's without copper and iron but they dont make any other kids multi's without it and wasn't sure what qty to put ds on of the adults :/ Ahh i really need to get all these test results back!

Has anyone ever had tics re start with a multi when it previously was fine? DS 6 was on the Thorne research childrens multi for 4weeks before we ran out and then there was a week he had without it while waiting on more and during that week he was even more vocally minimal. I didn't think much of it until we re started the multi and some vocals came back. I decided to take him off it about a week later to se if there would be any changes and by the 4th day the vocals went and only happen a couple of times a day if all at. Is it possible he just doesn't need them anymore? I haven't been able to have an appt yet with our enviro dr so not sure on the results for Pyroluria but i think i read that if he in fact has this then copper which is in the multi could be an issue.....? It also contains iron. Any thoughts? Thanks Vanessa

I have the same question my2sons, I wish there was a test already! I think i'm finding it harder because i started changes so quickly into my sons tics snowballing he never or may have never got to a debilitating degree, I'm sure not willing to undo all our changes to find out though. He still tics, Some facial grimaces every now and then and a vocal a couple of times a day, Some days no vocal or a slight "tsss" or "ssss" is what we have atm and he and i are very happy with this level as it's not interfering and is easier for him socially. It's 6 months into the year i decided to dedicate to making him and our family the healthiest i possibly could with the hope that it would minimize his tics, I've finally come to terms with the fact that they are just tics and he will most likely always tic. Hoping the next 6months continues and his health improves more as we are still looking into allergies, The pyroluria, heavy metals etc