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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 whole to eat more healthy....might help if you spin it that way to your husband.... Because you have had tics yourself it could be hereditary, not to deter looking into PANDAS just a thought. We currently have our son on a kids multi by Progressive, Vitamin D, and Natural Calm as well as regular epsom salt baths. Others use Omega 3's and probiotics but as of now our son is not on any due to reactive tics but if your child doesn't tic from them a great addition as well...plus again can be seen as just a usful health tool for all your kids! Using the word "tic" for the first time and admitting that that is what your child is doing is extremely difficult to come to terms with. I myself cringe still when I hear any of my other kids do anything that even sounds like a tic! It feels like after 3 years I am almost okay with my son having Chronic Vocal Tics but the thought of starting again with another child scares me! Even with a supportive husband I find myself needing this forum for strength and advice (I am the researcher, worker, worrier etc. he doesn't fight me, but I am in the driver's seat...sometimes it's nice to let someone else drive!!!), You are definately in a place with people who understand and I hope that you soon will get that support from your husband as well. No matter what, remember that the tics don't change who your child is. They don't speak of you as a mother...or lessen your child's chances of becoming something amazing...they are a lesson in patience, perserverance and unconditional love and support Your attitude about them will be as important as what supplements you use or what triggers you eliminate. Cry when you need to cry, and then hug your child and look hard for the blessings... I made a list of blessings related to my son and weighed them against the tics and work involved and I felt humbled by who he is...and I get to be his mom!!!!!! I pray you find support, guidance and comfort along the way. Megan
  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, flavoured and preservatives (nitrates, BHT, MSG etc.) You're on the right track but like Chris said expect some swerves in the road along the way Keep us updated and for sure PM me anytime! Megan
  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 to try eliminating those things first. A clean diet, a good multi, magnesium and epsom baths are a really good base and then if need be you can add as needed. You may not want to try too many things at once as it makes it difficult to see what is working and what is a trigger. I hope your Naturopath gives you a sense of clear direction...it is amazing to have someone to guide you... it can feel very overwhelming at times. I wish you the best. Megan
  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 everyone else would do! Funny enough, accepting this disorder and naming it was a release for myself and my son. He now was armed with information and a name for the noises he was making, and better yet home became a very safe and comfortable place for him to tic if he needed to tic (which he definately did). I find this goes in stages almost like mourning the loss of what we perceive as "our perfect children" and then when the dread dies away you build yourself back up with each little step forward. These kids are amazing and far more resilient than us! In the words of Max Lucado: 'Know answered pray when you see it, and don't give up when you dont.' 'As much as you can, give thanks. He has already given us more than we deserve.' A cure may not be the answer we're given but there are answers...have faith... and when you can't fight anymore let God do it for you. You are not alone, we are an army of parents battling alongside eachother. Megan
  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 picked up. Thank God that stage is gone!!!!!! I empathize with your fight not to punch friends and others...I remember thinking if one more person told me they understood or to stop worrying I was going to lose it...that's when I started posting here! My friends and family owe you all a HUGE thankyou Each step forward helps and everytime someone posts sometihing and I know that they DO REALLY GET IT because they also LIVE WITH IT lifts me up. So don't pop someone, come vent to us Megan
  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 increase mildly around that time, but shortly after taking his multi he and we notice them decrease again. I don't know the whys but the results have been noticeable and consistent to date. If I had to estimate I would say it has cut his tics by at least half if not more. We struggled with multis too, as he didn't do great on them but so far nothing but rave reviews on this one. As of now, we only have him on the multi, Natural Calm and Vitamin D, would like to add back Omega's in the form of flax oil as he seemed to tic from the fish oil but even that doesn't seem so immediate as he is doing soooo well. Our whole family went through long, nasty cold and he was the only one who didn't get sick. In the past this cold would have surely seen him with bronchial coughing and fever. Something is working, and my money is on the multi.... Megan
  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 Roseola, Hand Foot and Mouth, or night time issues. Later he started into night terrors and if sick would have superhigh fevers sometimes hallucinating and sweating. He was always prone to extreme bronchial coughing often to the point of vomiting. We suspected milk intolerance early on due to constipation. We didn't see tics until around Kindergarten age and they peaked at grade 1 after we had moved and his third sister was born, he had also started having strange anxieties for example swimming and needles. By that time we saw his grades dropping and realized he was reversing letters and numbers and a child who had been an easy learner was struggling with reading. This was when we realized we had something BIG going on here. And that began our search for food sensitivities etc and realizing that his dad also has a Tic Disorder. He had never known what it was until our son started showing similar tics. Can't think of much more right now but great question, I too am curious. Look forward to seeing others responses. Megan
  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 see the effect and decide if it was worth it....he soon decided for himself that it wasn't. These kids are amazing and I too am always amazed at how strong they can be...I applaud all his and your hard work! Take care, Megan
  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 list as it is artificially flavoured and coloured and for our ds the dairy. You could try a flax oil instead of fish oil, our ds also had a rise when using fish oil. Most decongestants have loads of artificials, there is a natural product you can get from Shopper's DrugMart called NIN JIOM, it is a bit strong flavoured but pure and honey based and works amazing...we use it for our whole family now even our 3 yr old. Have you begun removing artificial colours, flavours and preservatives yet? Could be the common denominator in many of the things you see as triggers. Just a thought. Do you suspect PANDAS, as you have mentioned antibiotics several times or is there a family history of tic disorders? Best wishes and welcome, Megan
  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 all the labels and stay as close to home grown as possible. Best of luck, Megan
  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 besides diet changes. For us it takes a few days and at waxing we may need to increase his amt. of magnesium. Generally we use at night 1/2 to 1 tsp. but when waxing he asks for it in the a.m. I give him 1/2 tsp. then as well. You may need time to figure the optimal amt. and best time given. Good luck. Megan
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