zsimms

Wow Cheri, that's interesting about the chromium. I might look into it. We called the MagOpticell company and they say there are trace amounts of salycilates in there powders and the flavours come from the oil extracted from fruit skin. Onwards and upwards... Zoe

Just checked my medical file and Emelia was tested for herpes simplex. Negative.

Hi Cheri, Thanks for that info. I'm confident we are dealing with the vitamin deficiency. The type of magnesium is Orthoplex MagOpticell. It's loaded with other things as well. But I just realised this morning that it's ORANGE and has "Trusil fruit punch flavour" in it. Yikes! I'll hold her off that til I investigate that flavour. The C powder she has, which is also loaded with other things, is very light cream colour as a dry powder but when you add water it turns orange. There is no listed flavours on the packaging. I have to say, Emelia's ulcers haven't gotten worse since we started on the nutrients from our naturo. But they only got better for a while. They're almost back to where they were before. In a good way, I actually think the naturopath is being forced to learn about food intol. as his other theories on food allergies and sensitivities don't add up with Emelia. But if he continues to deny food intol. we may have to move on from him. Which brings me to one of our biggest problems: Australia is way behind on treatments, diagnosis and beliefs in the health industry. Even in the alternative health industry. We just don't have the numbers of people coming forward to demand help that other countries have. Regarding pesticides: Do you mean even fruit that has been sprayed? Or veges grown in soil that was sprayed? I use very little to no chemicals in the house. We are on 100acres of bush, so it has never been farmed on or sprayed. But there is the occasional spraying of nearby farms -- but they tell us they're using an organic form of bug killer! I tend to think if it's still killing the bugs then it's still dangerous. But we don't use chemicals in our garden or anything. On the herpes simplex point: Emelia had the same mouth ulcers when she was 2yrs old. A mouth, full of them, and our doctor back then (different town) said she thought it might be that. But she didn't do anything about it. Is there something that can be done, Cheri? I thought if you got mouth ulcers, you just got mouth ulcers? I've had ulcers my whole life too. I've just eliminated the sodium laurel sulphate in the toothpaste. The Mycoplasma thing looks interesting. But in terms of that being the cause of the tics, I doubt it. Emelia's father has TS, ADHD and we both now think Aspergers -- his father has high functioning Autism and his mother has ADD and LD. So, you know, apples don't fall far from the tree. You've helped me think more about possible ulcer causes and double checking all the supplements to make sure their food intol. friendly. Thank you, Zoe

Thanks for that response Sherry. Our nutritionist put Emelia on Magnesium yesterday. Although we remembered that he had started her on that a while ago but her gut didn't handle it, and I've noticed some stomach pains in her today. Hope she copes with it this time as it seems she will need quite a high dose to make a difference. Cheers, Zoe

Hi all, It's been a while. Emelia, now 12, had a terribly ill two years. The short story is that she ended up pretty much constantly lying on the lounge, no energy (this is a child with adHd), multiple massive mouth ulcers, regular bouts of vomiting and constant headaches. Of course she also had all the TS stuff but at that point the vital health issues were more distressing. Her paediatrician had no answers other than maybe Chronic Fatigue Syndrome and even the gastro decided, and told us with her in the room, that all the tests and operations (including an MRI) had shown no results therefore she was probably losing weight due to wanting to be a model!!! OMG! This is a child who is homeschooled. Who barely watches t.v other than documentaries and the occasional movie. We live on 100 acres in the bush in Australia! She was ten years old at that point and didn't know what a model was until that day! I left his office disgusted and with no faith in the conventional medical profession. Finally we decided to go to a naturopath/herbalist/nutritionist. Best move ever! Two weeks after seeing him her general health was better. She was off the lounge and playing with her sister outside for more than ten minutes. His first treatment was for leaky gut and immune strength. Although we still haven't actually healed the immune, we are maintaining it. And that makes a huge difference. So general health is improving, but not the Tourette stuff or the anxiety or the ADHD. And her mouth ulcers, despite being better most of the time, are still disruptive her life about one week in every month (too painful to eat normally or even sleep well). One problem with our great naturopath is that he doesn't really seem to believe in food intollerance. He has his hair analysis test for certain allergies, but when Emelia did this it came back showing that she was not allergic to some things that I KNOW she reacts to like chocolate. It also said she could have dairy etc, he wanted her to go onto butter instead of margarine so we tried and she vomited for a week (literally little bits of hardened butter). So I'm looking for info on two things: One is which foods people have found to be triggers. And which vitamins and minerals they have found to be helpful. We have had Emelia off all artificial everything pretty much her whole life. And have had her off Amines, wheat, dairy, yeast for a few years now too. BUT I haven't conquered the salycilates diet yet. Just so extreme if we're doing all the others as well. I know sometimes you can think your child reacts to amines or wheat etc. when they actually reacted to salycilates, but you just weren't looking closely enough. And I'm hoping that's the case for our daughter. I'd rather take her off sals if she could have something else -- amines or wheat? I'm probably dreaming. But I was reading Kevin's blog thread and hearing about the bacon and the ham and thinking "wow, that would be great if I could give Emelia that!" Ah, how desperate we get! LOL. Anyway, being that salycilates tend to link in with both TS and mouth ulcers, that seems our next best shot. Just thought I'd ask first, how many others have found salycilates or amines or whatever to be a trigger. I'm open to experimenting (with a box of Epsom Salts tucked under each arm) to see if there are more things that could help. Of particular mineral/vitamin interest is how much magnesium people are taking/giving to their children. I'm not sure that our naturo has Emelia on enough of that. Considering its effect on tics, anxiety and immune function. Okay, enough rambling, I hope I was clear enough. Any info on food triggers and vitamin/mineral helpers? Many thanks, Zoe (in Australia)

Hi all, So I got our long awaited Bontech products on Monday! Woohoo! We are trying ts PLUS CONTROL and ts PLUS EPA/DHA for dd's adHd and ts. Her full dose should be about ten capsules of the plus control per day for her weight so I started her on 2 tablets on Monday, 3 tablets on Tuesday and she had 4 tablets yesterday. We were also doing 2 epa/dha per day on each of those days. What I found tho was that she got very hyper, more agitated than usual so she was snapping at the other kids easier than normal. Now, having said that, she looks happier and is not being nearly as negative as she normally is and her tics already decreased a fair amount, we're down to a bit of sniffing and throat clearing that we can barely hear. Obviously these things wax and wane but compared to like the day before she started the Bontech products to now - she feels very different. So i suppose what I'm saying is that her tics are improving and her emotional and mental state seems to be quieting down but her energy level seems to have been boosted, causing the hyper reaction. Today she woke feeling sleepy, she said she felt 'slow' and I am keeping her on 4 controls but leaving the epa/dha out as I know some people don't tolerate that well, so I'll add that back later on. And I'm making sure she has them at regular intervals. As she has been on failsafe diet for so long I was wondering if it could be that the sudden huge hit of vitamins could be giving her a massive amount of energy to deal with and that she might get used to it? Or maybe it will even out? Or maybe it's just normal in the beginning with these vitamins? Maybe I should give her an epsom salt bath each night as well? I'm wondering if anyone else has seen this reaction or has any experience or advice?

Carolyn - Thank you so much for putting in so much effort to your posting. I have been searching the boards for ages and so many answers to my questions were in that post above. Thank you, thank you, thank you! Chap - I'm sorry you are going through such a tough time and I wish I could give you more helpful advice but I'm just beginning this journey myself. I wish you more peaceful days ahead. Zoe

Hello, I am scouring the boards for information and would like to ask for opinions on the product No Fenol. If anyone has or is using it, how useful it has been to them? I am staring to wonder if what I thought was DD's intollorance to Sals, Amines, Gluten, Dairy, Yeast, Preservatives and MSG might be a Phenol sensitivity? I'm still looking into it but would love feedback on No Fenol. Thanks Zoe

Thank you for your responses. I have been busy researching and reading up trying to figure things out. It's wonderful to here that my daughter is not alone and I actually told her of the responses and she just got a huge smile on her face and said "really? I'm not the only one?" So please know that just sharing your stories with me has helped my daughter. Her tics are rotational as are all tourette tics and at the moment the stomach one has lessened whilst others have flared. Unfortunately she is now rubbing both elbows back and forth across the side of her body and this IS hurting her! And so the cycle continues! I have ordered the t.s PLUS CONTROL and the other one that goes with the CONTROL from Bontech and am waiting impatiently. Hopefully these may help a little. I have Emelia on no Salicylates, Amines, Gluten, Yeast, Dairy, Preservatives, MSG. It's actually a miracle that we eat anything some days! I'm reading now about Phenol Sensitivities and am interested in this because a few years ago I tried a product called Phenol Assist and DD was eating Banana and Tomato with none of the severe side effects she would normally get. However I got scared off by some contradictory information and stopped using it. Anyway, it seems to be popping back up more and more in my research so I may give that a try soon too. One thing at a time though. Thanks for your insight -- It's good to know her symptoms fit T.S instead of being another thing all together. Zoe

Hello, I have written another post on stomach tics but now I've been reading some other posts I am super curious. All internet information on TS seems to only discuss the physical stuff, but that stuff is easy to see. What I am reading from the messages on here is more about the stuff we can't see - the inside! And it's fascinating to me. My daughter is ten with ADD and what we were told was tics associated with ADD but that she has now had for four years and more of them and both motor and vocal etc, so we will be seeking a TS diagnosis soon. I have known about her food intolerances since she was a baby and as I have f/i also it was natural to start eliminating foods that affected her. All artificial colourings, additives, preservatives and flavours are like poison to her and she is now on a failsafe diet. We just did this naturally as we saw her behaviour was affected, not thinking about her tics so much, she just would be agitated, angry, have outbursts, cry, not sit still, just really like she was bouncing off the wall. And we also found that wheat makes her worse and yeast (maybe) so we put her on a gluten free diet as well, and are now waiting for her appt to see the gastro to have a look inside (colonoscopy or endoscopy, I forgot which one the ped wants her to have). Now I'm reading all these messages about food allergies, and gut problems it just seems to be so linked! And like maybe all these things I've been trying over the years actually aren't separate problems but all part of the one issue! We live rurally in Australia and about a four hour drive from the nearest big city with decent doctors and even then when we get to see one we are always nervous that they're going to be misinformed. Like the amount of gastro's who don't believe in food intolerances! So we are limited in what info we can access but intend on doing our best to not take no for an answer. So some questions I want to ask you all are: What you have learned about TS and the link it may have with intestinal issues? What the link is between the lack of vitamin absorption too! What vitamins seem to make the biggest differences? And who can actually make a diagnosis of TS? I appreciate your information. Like a light in the dark actually. Zoe

Hi Chemar, Thanks for your encouraging words. I personally have just found the school system way too casual about learning difficulties and ADD. It seems that because DD is bright and doesn't throw chairs around the room, like the steriotyped ADD child, she doesn't demand their attention so she doesn't get it! Anyway, thanks for the info about the laptop/keyboard. I am off to check them out now! Bit of Sunday morning down time. I'll keep searching for more information about this difficulty. Thanks again, Zoe

Hi there, My ten year old daughter was diagnosed with ADD a couple of years ago and we will be gettiing a diagnosis for TS soon. We always new she had learning difficulties and pulled her out of school and home school her now as a result of not getting any in school help, even though her teacher acknowledged that she had problems! But over the years of home schooling, I have narrowed down her difficulties and it seems that writing is the main area that she struggles with. Initially I thought it was part of a general dyslexia, which her father and all of his family have, but she has no problem reading, comprehending or listening. Her speech is sometimes a little quick and things like beginning - middle - end of sentence structure can be overlooked by her, but overall she is quite sophisticated in her language abilities. Even typing on a computer, it just seems that getting the words down in print is like trying to run through quicksand for her. I am keen to investigate a diagnosis for this as it would helpful to know how I can help her. I am wondering if anyone knows any more about this? I have often wondered if I should let her use other methods of showing her work than writing. Like making a recorded film about a project rather than writing a report, do you think this is a good idea or should she at least try to do the writing? Or is this the sort of thing that is always going to be bothersome to her and she should not be made to go to that difficult place in her mind? I once had her assessed by a psychologist who's results said that he could see a definite discrepancy between her above average i.q and her reading and writing abilities but he blamed home schooling and said she would be better off in school. That assessment was done when she was seven and her reading has improved out of sight with encouragement. I am still angry about that assessment. I hate when people think that every time dd has trouble with something, even normal trouble, it must be the home schooling. Anyway, I would appreciate any additional information if anyone has any. Thanks Zoe

I’m new here, I live in Australia and my husband was diagnosed with ADD and Tourette Syndrome as an adult unfortunately as he suffered his whole life. So when our daughter was recognizably so similar to my husband in so many ways, physically and personality wise, we started to suspect that we might end up at this point. Our daughter is now ten years old. I home school her because of learning difficulties she has, she has been diagnosed with ADD and she has a few motor and vocal tics. I was told initially by our paediatrician that the tics are normal childhood issues or they could be part of the ADD but she’s had them for four years now, although they have waxed and waned in that time, and my husband and I are now sure that it is Tourette Syndrome and will set about for a diagnosis soon. Although it could be hard as dd will sit perfectly still sometimes in Dr’s appt. (apart from touching everything), hopefully diagnosis won’t be a drama. DD’s tics so far have been or currently are sniffing, blinking, snorting, finger touching one, stretching her head out forward and there is a combination one where her hands tensen, then her arms tensen and then her neck and head stretch out forward. My main reason for posting though is to ask about stomach tics. DD has this one where she pushes her tummy out really far and then pulls it in really far. It looks awful, like it might harm her insides or something and we are a bit worried about it. It’s the main one that bothers her too. Does anyone have any experience with this? Also touching everything in supermarket isles? Anyone experiencing this too? Thanks Zoe