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mommyfor4

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Everything posted by mommyfor4

  1. This post made me crack up How many times haven't many of us wanted to tell a neurologist, or other dr. to shove it??!! Thanks for the laugh...good to hear things are still going well and the grades to top it off.... Megan
  2. Hi...apples are high in salicylates which some people have sensitivities to, the other trigger could be pesticides if not organic apples. Our ds definately needs to eat organic as he is quite sensitive to pesticides and other treatments ie waxes etc. Megan
  3. Hi! Early on in cleaning up our ds diet, I remember offending foods taking somewhere between 3-5 days to clear his body, now it is much shorter, sometimes within a day! I think the artificial colours were the worst, maybe their reaction in the body is longer than other triggers...who knows? Are you seeing any change since your post? Epsom salt baths, lots of clean drinking water.... Megan
  4. Definately better than what's in other sodas. Once in a while (and I mean really infrequently) we allow something like this for our son, but in his case too much of any sugar, even raw cane sugars etc. will effect him. Not necessarily tics but then behaviourally, hyper and unfocused, impulsive. In this case it may be a try and watch for reactions. Remember though that pizza has many possible triggers (dairy, wheat, possibly nitrates and artificials)so it may be hard to tell if it's pizza or soda! Good luck!
  5. Hi Julie, I'm so sorry you are in such a lonely, frustrated, confused place! Definately have been there myself! I will just ramble too and see if anything helps. The first thought that came to my head was maybe your husband will be more receptive to just a good, clean multi vitamin/mineral for kids. It might normalize it a bit for him. As far as allergy testing the conventional allergy testing might be useful but will not show intolerances/sensitivities. Some of the main offenders could be dairy, wheat, soy and as you said artificials. For us elimination diet also helped our family as a wh
  6. Hi everyone, I just wanted to update again. Things are still going really well, he had a slight rise as a virus riddled our house but HE out of all 6 of us, did not get sick! This is huge seeing as he was always the first to pick up any cough and it would quickly go bronchial. As I said in my last post, he is just all around more balanced. We are still on the same basics, the first being his Progressive multi, Natural Calm, Vitamin D and epsom baths. It seems for him the simpler the better....will keep you all updated but so far so good. Fingers crossed. Megan
  7. Yes Chris is absolutely right...I didn't mention vitamin D but it is a regular part of his supplements as well. We use the D drops, easy for everyone just drop in juice or on food. Be aware with probiotics that some of us have found the powder supplement has increased our kids tics, I was shocked by the increase with our son! Soy can be a trigger for some people so a probiotic is great, but watch for soy as a possible trigger. Other than that again, such a good place to start after as Chris said cleaning up the diet. It means read, read, read and avoid anything artificially coloured, flavou
  8. Kevin, forgive me if you have already been over this, but I was wondering if you notice an increase in the cough tic after gym. I couldn't help thinking that even if he isn't chalking up others are (at least in my day), and I know my son reacts to even sidewalk chalk etc, with a cough like tic. Just a thought. Have you seen any wane since no more apples? Maybe to soon...I am unsure of them myself so I am curious as to your son's reaction...I know they are all different but it helps to share notes Megan
  9. Hi cws, Our son has breathing tics and they sound similar to what you describe, I think you also mentioned a coughing tic? or ds had this as well. Those tics for him seemed to be related to his wheat and dairy intolerance. We rarely hear the coughing tic anymore since removing wheat. The breathing tic for us seems to be an environmental trigger for example scented candle, perfume, hairspray, laundry detergents etc. I also noted you said your son loves sugar...we found the things our son was craving, sugars, breads etc. were his worst intolerances. Keeping a list of his cravings for us helped
  10. Hi Kevin, our son also has a breathing, or throat clearing tic sometimes a "k-k-k" sound during homework. It seems to follow a busier day for him or when he is doing something he really needs to focus on. Sometimes music helps but most times it just seems to be something he needs to do. I also read on one website Red Delicious being on the low scale for salicylates as well, so we have been also giving them...will try switching to Golden's ASAP and see if it makes a difference. Megan
  11. Isn't it astonishing that a noise, movement or word can stop us dead in our tracks and cause such fear and anxiety. I too have many times asked why my son? why us? I've been angry and then fearful and then looked for all the why's, what could I have done different's, and what if's. But at the end of it all it doesn't change a thing. At the beginning I fought "labelling" my child and was fearful of what others would think and how they would react. I wanted him fixed and I wanted it now....then I realized I was losing sight of my son and only seeing his tics. I was doing what I was afraid ever
  12. He is 9 now and has not had night terrors or hallucinating fevers in a few years but yes they were pretty scary! He handled them fine because he generally didn't remember having them, but my husband and I at times were pretty freaked out. He was our first baby! It is a horrible helpless experience to see your child in so much fear and not be able to calm them, because they're asleep! It took many sleepless night of soothing talk and nightlights. The fevers were even more scary, very high and him scrambling away from me because he's seeing something else... They were common with most colds he p
  13. Hi Faith, We are still using the Progressive Multi and are very happy with the results. He has Chronic Vocal Tic Disorder and we have seen dramatic decrease in the vocal tics, even to the point of lapses through the day which we have not ever seen since onset. He just seems more balanced and better focused. The moods are gone, I don't think they were related to the multi, maybe seasonal changes.. We do still keep up with the Natural Calm especially in the evening. The multi is a breakfast and dinner dose and I do find that by dinner he is ready for the second chewable as his tics incr
  14. Hey Lynn, Our son was a very quick learner, sitting, crawling, walking very early. His speech was very advanced as well but he was very reactive to learning new skills and would practice them to the point of frustration until mastering them and then moving on quickly to the next skill. He also was not a good sleeper and was easily overstimulated, although in all other areas a very easygoing baby. Even in toddler years he was very tactile, sensitive to tags etc. and needing to rub skin, especially mine or my mother's. He ALWAYS reacted to immunizations with fever or strange things like Rose
  15. Hi, I can't give you any great advice regarding pyroluria but I do recall in my own searching that gluten and casein intolerances are very common in individuals with pyroluria...so what came first the chicken or the egg??? I believe pyroluria is thought to be genetic as well(could be wrong on that one). As far as dosage, I'll leave that to the more knowledgable members but I wish you the best. Megan
  16. I agree, we were a good year or so in before we allowed any testing on his part and trust me it didn't last long....he hates his tics and how his body feels when out of sync. We too found that as his body became more balanced his waxing shortened in duration. I believe these are all good signs that something is healing within the body. Do I think we will be tic free? maybe not...but seeing the decrease gives a feeling beyond words. He'll last....he seems like a strong boy with supportive parents! Megan
  17. Hey Kevin....congrats on all the good news, grades, social, gymnastics. Amazing! Just wanted to give you a boost. I remember when we first started our ds finding it sooo hard especially around parties and dinners out. It felt like he had to mourn the loss of those things but as time went on we were able to find rewards and substitues for the food losses. Cake at a party...homemade brownies or gluten free donut at home etc. He now chooses to forgo any suspect food because he has seen the negative result. There was a time that we allowed him the choice to cheat once in a while just so he could
  18. Hi Cristo, I am also in Canada and have found that a good multi clean multi is hard to come by, we have recently started our ds9 on Progressive MultiVitamins for Kids Chewables and are really excited about the results. As far as icecream and pizza, it could definately be the dairy, but also the artificial colours, flavours and sweeteners. Even the sauce or pepperoni could be an issue for additives and nitrates. Many of us see a rise in tics in response to viruses and fever. Stress...yes....another big factor in tic increases...epsom baths help ALOT and Natural Calm YOP is on our no go lis
  19. We experience similar reactions with our son. He has EXTREME anxiety over needles yet can wipe out on his dirtbike scrapes and gashes and get up without a whine...this is partially why we went the elimination diet route. I sometimes wish we could do the blood tests but for now I have agreed for his sake to try all other routes first. If you find something that works though...bribery, money, anything! let me know. So far ours could care less for the reward, his anxiety is just too big. I hope it goes well, it would definitely help avoid alot of the guesswork. Megan
  20. Hi Bridy, I am sure so many others will agree that food sensitivities can most definately be related to TS or Chronic Tic Disorders. Our ds has Chronic Vocal Tic Disorder and food sensitivities are major tic triggers for him. The classic skin prick testing will show "true allergies" but not necessarily food intolerances/sensitivities. there are other tests (I'm sure others will add to this) but we personally found food elimination diet the most effective, although alot of work. As time continues you grow more adept at seeing possible triggers and reactions. The trick is to read, read, read al
  21. When we went wheat free with our ds his tics went haywire for a week or two and then mellowed, I am convinced it was due to his body not getting what it was "craving". We have not seen it with any other eliminations only wheat...which was the first elimination and seems to be the biggest intolerance for him. Megan
  22. Hi again, we use Progressive Multivitamins for Kids, it is a multi vitamin/mineral. If you suspect corn as an issue I think Cheri found it did have corn derivatives but our ds is doing amazing with it. I also try to avoid too much juice and if necessary only 100% fruit juices and water them down. Our ds takes his Natural Calm with water and a small bit of pure Maple Syrup, seeing as we are yet unsure of some fruits as possible triggers. For us wheat and dairy are main triggers, an elimination at some point would probably be beneficial even if only to rule them out... Megan
  23. Hey Kevin, Yes I had mentioned that our ds generally has increased tics prior to symptom onset and during illness. Our ds is also increasing as cold is ravaging our house as well. Same situation. Tic increase, now mild fever...definately nightly epsom baths for him and extra Vitamin D, C etc. Can't believe your son even got that far with the neti...noooooooo way our ds would let us put water in his nose...will do saline mist though....as a last resort Hope it all mellows post viral. Take care. Megan
  24. Hi, I too am wondering if you are using a different magnesium. The one we use (and most others as well...I believe) is Peter Gillham's Natural Calm, a Magnesium Citrate Powder. Personally, I only use the original flavour as it is unflavoured and our ds seemed to increase with the flavoured versions. You should be able to get it in your local health food store or request it if need be. We do notice some decrease with it, but by far for us the epsom salt baths and a good clean multi....no artificial sweeteners etc.(not always easy to find, you may need to search) have been the most beneficial be
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