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Everything posted by mommyfor4

  1. Wow! Seems to be ALOT of changes going on really quickly. Did she explain why she wanted you to discontinue the other supps. ie Natural calm etc. (assuming you used it...)? Did he start all the new ones at once?! That is a big list and many for detoxing so it would be hard to tell if reaction is herxing or ingredient or loss of necessary supplement, no wonder you are feeling anxious!!! I second and third Ozimum and Chris, our Naturopath really pushed for one move at a time, especially when adding things in. I too believe low and slow is the way to go, hee hee sounds like a commercial The stresses from state testing and starting a new school would be enough to start my ds ticcing and he HATES needles so those tests would cause major increase from anxiety. He may simply be feeling too overwhelmed for so many changes, if I may be so bold... maybe let him get through state testing and settle in new school before changing too much in regards to his body...? Plus at that point you could add slowly and watch for reactions both positive and negative. Were there any previous supps. that seemed to be beneficial that she had you remove? For example my ds now asks for his multi if I'm busy and knows when he needs a little more Natural Calm. I'm sorry, I can't remember your son's age, but depending on his personality and maturity he may be of assistance on what he feels is the culprit...stress or the change in dr. supps. etc. I really wish you strength, I know how catastrophic it feels when our kids tics seem out of control and the fear that our decisions contribute to that but like Ozimum said "trust your gut" and know you are doing all you can. Best wishes, Megan
  2. Hi, our son has this vocal, you explained it perfectly. I know people are triggered by different things but have you also considered maybe tomatoes? For our ds tomatoes were his chirp trigger...took me a long time to figure that one out. Pizza was always a big offender it has it all, wheat, dairy, nitrates in pepperoni usually and for our ds tomato sauce. I hope it clears quickly for you all it is a hard one to ignore. Sorry for your frustration with the dr's, seems to be an overwhelmingly common issue Frustrating to say the least, we pretty much need to be our own phd's in tics and tourettes. A little outside knowledge and help would be sooo welcome...I feel your frustration and I second your big *sigh* oh quick note, this was also his tv tic...maybe a thought? Megan
  3. Megan --- Am I reading this correctly? You eliminated fish oil and vitamin D??? I am on Bonnie Grimaldi's program (have been for months) - and the fish oil and vitamin D vitamins are a big part of her diet. On top of that, my naturopath has me taking 5000 UI of D3. I read this email and just had to make sure I'm understanding you correctly. Granted - I wish my bonnie plan and diet were giving me better results - has not been very good for the last couple months or so. Hey Rick, Yes you read right. We have stopped the Fish oil and D3. I removed and challenged both of these with our ds and each time saw an increase when added back in. Both are flavour free and no wheat, soy or other allergens so the only deduction I could come up with was was that they in fact were the triggers. He is eating avocado and salmon for omega's and he is really outdoorsy for vit D and try to eat as many colours as possible. Seems some people just can't take these supps. for some reason. Maybe try an elimination and challenge...we have definately found for our ds the simpler the better. I wish you luck, please let me know how things go if you try the elimination process. Megan
  4. Okay post virus and full moon his tics went back to what we consider his baseline, but we did notice an obvious increase when watching tv (we have a plasma...just fyi). So this week we have gone 99% tv free and his tics have dropped again to the most minimal we have ever seen! Plus I've seen the best come out in my kids...they are really playing and reading and drawing and all those things that make a mother glow Not that we were even huge tv watchers but still, they were watching after school and before bedtime routine of bath, books etc. So at least 1-2 hrs a day maybe more on busier nights. Really excited by the results all around. We did know he has reactions to flourescent lights etc so should have done this sooner but just wasn't in that place yet, but I would definately recommend at least trying it for a week and seeing if it is an issue for any of our kids...just be prepared the first couple days with alternate activities or it can get a bit crazy Oh yea and we also realized with his last waxing that a new cereal we had been using was also a trigger although there were no ingredients that "should" have been a problem. Just goes to show how complicated this really is...yikes...must be really diligent, have eyes in the back of your head and the patience of a saint...shouldn't be that hard Looking back over the past few years I'm realizing my bad days are fewer, his waxings are fewer and shorter: although they still have the power to throw me for a loop and maybe just maybe we are on the winning side of this battle for once!!!! My best to all, Megan
  5. Hey Kevin, the rasp./lemon Natural Calm caused increased tics in our son. Went back to the original and no issues. Just thought I'd add that, although seems you've already seen a connection as well. megan
  6. Hi Sal, our ds is also 9. I can't say for sure whether his increase is due to age, and I do feel that due to his diet and multi etc. we are not seeing them at what would be their worst. My hope is we can avoid the obvious peak by maintaining his diet etc. but only time will tell. Our biggest issue right now seems to be around tv use, so we are far more strict regarding any screen time, especially before bed. Like you I am just hoping that with age we will see a decline, hopefully without any more increase prior to that time. My husband had very similar tics and found his were at their worst around ages 9-12ish and by the time he finished highschool they were very mild. He said for him it became easier to disguise them or change them to something less noticeable (most of his were vocals like our ds). Now they are almost non-existent...seems a long time to wait but does give some hope. Thanks Bonnie...the diet stuff is not always easy, I find with every increase I am scouring all his foods etc. trying to figure out what I allowed in. Usually, there is a food trigger but sometimes we just have to accept that there are triggers and waxing that we just don't have any control over... Megan
  7. Thanks Chris. At this point I have not really paid enough attention to say for sure, but this isn't the first time I have wondered about seasonal swings, moon cycles etc. This time there was definately a virus but I really wouldn't rule out these others effects even on immune system. On that note...how are things going with your son? Megan
  8. Hi all, we have had a waxing period here again...seems to go with the virus going around our house. There is strep going around their school so am watching for that as well. After about a week of increased vocals he is mellowing again, I also suspect a new cereal we added recently but all in all things are still well. My 7 year old daughter has been eye blinking with intermittent small vocals and the 3 yr old is still making self sooth noises when watching tv or being read to. Soooo...trying not to get to worked up. I still can't say the youngest seems like a tic or if it is normal soothing habit?...I guess we'll have to just see what develops, but I am hoping watching their diets will be beneficial regardless. Reports came home...great comments from his teacher so multi etc. seem to be helping with focus and diminishing tics. Hooray! Nice to have others recognize the work he has put in! My best to all... Oh...just a quick question, anyone have issues with molasses? I don't know if it was simply the virus but his tics seemed to increase with this cereal and muffins I made, both had pretty high amts. of molasses. Thanks. Megan
  9. Hi Veronica, Yes I also was on Diclectin with 3 of my 4 pregnancies due to extreme morning sickness...each preganancy lasted longer. My son, being my first, is the only one I was NOT on Diclectin with, at least I have no record of it and am quite sure I was unaware of it at the time. I cannot say with 100% certainty but am pretty sure... and he is the one with Vocal Tic Disorder. I delayed immunizations with all my kids, nursed for well over a year, seemingly did all the right things...sometimes I think there is just the wrong cocktail of "things" that trigger a response we have no control over, whether genetically disposed or other. Two of my girl have also shown signs of transient tics and sensitivites and I continue to watch and hold my breath. Can I ask what had you asking about Diclectin? To be honest it wasn't something I really questioned even after his tics emerged (he was around 5) funny because I questioned everything else !!(which again makes me believe I didn't use it with his pregnancy) but I too would love to hear if others used it or something similar. Megan
  10. Welcome DandV, It sure sounds like you have your hands full! I think regardless of PANDAS or chronic tics for other reasons a really clean diet will be most beneficial. Organic...yes expensive...but in my experience definately necessary. Our son (9) who has Chronic Vocal Tic Disorder is definatley triggered by pesticides, it became really hard to tell which foods could be offending for him when the pesticides were in play. To keep this fairly short here's my quick list others may add or delete: Remove all artificial colours, flavours, preservatives and sweeteners Elimination diet, maybe start looking first at Gluten and/or Dairy, possibly soy A really good multi...it must be clean of artificials so read well. I see you are in Hamilton so your local Health food store should carry the Progressive Children's Chewables, we have had amazing results with them...others have had similar results with Kirkman Spectrum Complete Powder (hope I got that right) Natural Calm Original Flavour- Magnesium Epsom salt baths- we try for every second night. Probiotics and Omega 3's are also beneficial for many but others can see increases to the supps. Vitamin D as well has seemed to have mixed results...you can look up many posts on these three... and yes...it our son's experience flourescent lights are brutal for him, he hates the new energy saving bulbs so we have had to change many back. Also going as green as possible with cleaning products etc was also beneficial for us, dishwasher soap was a trigger for him... Now after all that, I wanted to say don't feel too overwhelmed..LOL . Pick one thing and focus on that, it will not be a quick fix but so many of us have seen results. Even the crazy grocery bills and health food store visits become easier, the cooking becomes more second nature and on a whole the family will be healthier. There are going to be waxing periods regardless so try not to be too discouraged should that happen. Oh yah...sorry you asked about a Naturopath or Enviro Dr.? I think especially to start they can be a really great support, you may need to interview your choices before you go. Most will give a free discussion/meet the doc kind of thing if requested. We did this before picking our Naturopath and are glad we did! No sense wasting time and money if the dr. just isn't a fit! I really wish you the best. I hope I didn't drop too much on you and leave you feeling swamped....just keep asking questions... Megan
  11. Hi Pat, I can fully sympathize but it sounds like you are doing all you can as far as being frugal! I'm in Canada so exchange and taxes etc...but for a family of 6 my monthly is around $1000-1200. Just like you I try to do as much from scratch as possible and buy organic etc. I think there is very little way to get around it, good healthy food is costly (seems really messed up doen't it?). Definately need to expand my garden this year! Then there are the multi's and supps... No advice here! Just sympathies.......would love any help myself but truly think this is the best I can do given the dietary circumstances and sounds like it may be the same for you...BIG SIGH.......................... Good luck, Megan
  12. Hi ladyd, Did the tics increase around the time you upped the Omega 3's , many kids on here cannot use fish oils (my son for example, or probiotic supps, or even Vit. D) Yes, at times we do see the pale skin and bags when ticcing waxes although with his clean diet we see this far less. Dark circles generally speak of milk allergy but can also mean immune deficiency... Often this comes for our son when he has a virus or has had repeated exposure to a trigger. As far as the blood tests, I personally believe that elimination is the most effective and true indicator of sensitivity. It can be overwhelming at first but keeping even a basic food diary can be most helpful. Just wanted to also add that alot of gluten free foods sub in soy or corn which can also be triggers for some, so you may need to watch for those ingredients when you see triggers. When you went dairy free, what did you substitute with? This beginning stage is by far the hardest but hang in there, soon you may be able to start seeing patterns and triggers and it becomes more second nature to cook and live with these diets. Ask as many questions as you need, brainstorming with others on the forum has been most helpful for us in finding many of our son's trigger foods, supps. etc. Megan
  13. Best of luck Kat, An elimination diet can be really intensive but we found it made remarkable changes. Our son still tics but generally it is easier to find the trigger. Dairy took some time for us to see changes so hang in there for a while before eliminating it as a trigger, I wish you the best. It is highly frustrating when you are feeding your child all the best things and others keep introducing candy etc. you may need to come up with a list of acceptable treats to help others transition...seems alot of people feel they need to treat our kids because they feel we are depriving them somehow! I found giving those people a list of things that seem like treats helped some... Megan
  14. Hi again, I would like to think that most parents consider both avenues as the forums overlap quite a bit. I know many parents on this forum are aware of PANDAS/PITAND and most of us have not had much help with conventional dr.'s, so some of our kids are not "officially' diagnosed. This is a great forum for advice and brainstorming and bouncing ideas and what works and doesn't...so that said...there could be undiagnosed cases of PANDAS but not for lack of people discussing the possible causes of tics, IMHO Thanks for your well wishes and I return them as well. As I said the sharing of info. is what has brought many of us to the places we are with our kids today and has been such a support and guide. Megan
  15. Hi HT's Mom, we personally have looked into PANDAS but our son does not fit the criteria and we do have a family history of Tic Disorder. My husband and his uncle both had undiagnosed Tourettes or Chronic Tic Disorder. My son did have strep many years back but his tics were present prior to the strep and my girls have not yet had strep at all. For us it seems to be a hereditary thing, what pulled the trigger I can't say...our son is doing well on dietary changes and a good multi and Natural Calm, may be time to look for food issues with the girls next. Our first clue that something wasn't right was his reactions to antibiotics and any and all over the counter meds. eg. Baby Motrin etc. and his reactions when immunized, he had some form of reaction every time, his baby sister seems to be similar and she is the one who seems to be developing some form of transient tic. For now we have to just wait and see. Megan
  16. Hey Bonnie, Sorry to hear this, breaks my heart But... If as you say, he seems less effected by it then you, then pat yourself on the back for a minute...you have obviously instilled enough self confidence and love and support that he isn't yet searching for others approval! Sometimes the way kids treat other kids just sucks! No other way to put it. So far our son ( he's 9) has not encountered too much bullying, but I have to say that when my daughters started with transient tics, I had a moment of panic...girls can be soooo cruel and unfiltered with their comments and behaviour. And I regularly think of "what if he/they get worse?" I dont' really have any advice either just wanted to say that my feeling when I read your post was "you seem to really get it, and are doing all the right things...he's a lucky boy to have you, and at the end of the day that will out weigh the cruelness and ignorance of strangers." They don't know him or try to understand him because of their own insecurities and issues, but he is actively dealing with his because of you! Way to go Mom!!! Strength for your trying moments... Megan
  17. Hi Bonnie, We still have the waxing and waning as well but by this point the waxing seems easier to pinpoint to a trigger. Last night he started with the high squeal, we haven't heard this in ages as it seems to be linked to artificials, he was at a friends yesterday as it was a snow day here and sure enough he admitted to having a yogurt there. I am convinced that it was the yogurt and whatever was in it as far as colour and flavour. We still also get waxing around viruses etc but not nearly as bad or as long lasting as before. I found for us, the majority of work and research and trial error came directly from us. Our naturopath is a great secondary source but I still feel that we have done the most work ourselves, it can feel really exhausting at times. I just can't stress the importance of diet enough though for our son, working in combination with the Multi. I think 4Jack posted that Progressive can be found on Amazon now so hopefully makes it easier to find. I love the added greens etc. in it! I hope you can find a great dr. but if not hang in there, we've had to do this all without blood testing, allergy testing etc as he is a No Way, No How, No Needles kid. Would have been easier maybe but it is do-able. I really wish you strength and renewed energy...maybe a day to revive yourself...massage, facial, week in the Bahamas? Actually they all sound good, should take my own advice! Take care, Megan
  18. Thanks 4Jack! I hated not being able to tell people where to get it! Have you found the same great results as we have experienced? I give it to all my kids now and we have had one of the healthiest winters ever, maybe coincidence but it seems to make sense with the results our son has experienced. Megan
  19. Hi ladyd! What a great opportunity to educate! We have found that our son's teachers (so far) have been really interested to learn and also then help out. On pancake day etc. many of them have even asked for "friendly" recipes and are amazed at the results of dietary changes, it also helps them to understand why some days are worse than others or why some days are more difficult for our kids, like when other kids birthdays come and our guys can't eat the cupcake etc. It's nice to have a heads up so we can send appropriate substitutes. I hope this can turn into a positive opportunity for you and your son! Good luck Megan
  20. Hi cory2605, As far as ways to help with discussing day etc. we have found that a though box works pretty well. With four kids, he's the oldest, he doesn't always get that perfect moment to talk with us, so we have a box that he can use to write or draw and then put in the box and in the evening we can read and discuss what's going on. Has been really helpful and his frustration level fell bigtime! I also try to set some game time during the week, they seem to talk more openly when engaged in another fun activity. Hope some of this helps. I saw mythree (Lisa) already told you about the Progressive Kids Chewable we use, but I understand that it may be a bit hard to find in the U.S. Regardless of which you choose, I personally believe the multi is one of the most important things we have added, working hand in hand with eliminating offending foods etc. Megan
  21. ...this is a case of trust yourself! Not all doctors can be experts in all areas, but you are an expert on your own children. If you see clear cause and effect, no behavioural pediatrician can beat that! We were told our son's tics were to get attention...funny as they are here 4 years later! Glad we walked away then! The truth is you may not ever get that kind of support from the usual routes people would take, thus the importance of a good naturopath or environmental physician etc. Don't let their closemindedness discourage you, just read post after post of parents saying there are alternatives that help. I wish you strength and hope your next appt. gives you the guidance and support you need. Megan
  22. Hey Lisa, All my kids drink Almond milk, no cows milk in our house! But I have not been super strict with the girls about cheese and yogurt until our seven yr. old started ticcing as well. Now we only have minimal cheese on taco night every 3-4 weeks and kefir every 3-4 days. We eat mostly by his dietary restrictions, the only acceptions being rye bread etc for the girls lunches. That may need to be the next issue but we'll wait for now as I try to limit it anyway. My husband snuck white bread into the house the last couple shops and I am suspecting that may be the possible trigger for the three year old, needless to say it's gone now (the bread not the tic), waiting to see if things clear, but I'm still unsure if hers is anything more than a toddler transient tic or self soothing behaviour. I guess my thinking is: if he shouldn't be eating these things, should any of us? Still feels like a wait and see for us...the thought of the whole family going totally wheat free feels huge right now, even though probably 85% of our diet is already. At this point I am trying to minimize the wheat and rotate as much as possible, watching for issues with the other kids. So far only my 5 year old has never shown any signs of tics. The others two girls have at some point had eye blinking(although short lived) and at least one other repetitive noise (again transient) so it's a wait and see for us. I second your Ugh! Megan
  23. Hi ladyd, I think you are definately on the right track. Our son definately has a wheat intolerance and dairy, soy and artificial everything. Even members of the family who were sceptical couldn't deny the change once he came off wheat and later again off dairy/soy. We find some are more obvious (wheat) and others seem to have a cummulative effect and take longer to increase his tics. Keep it up! And congrats on an amazing first step and seeing results! Amazing how excited it makes us Our son is 9 1/2 and after 4 years we are still finding some food issues but removing the major offenders has done wonders for him, plus a good multi, Natural Calm and epsom baths. The diet does get easier and a bonus is the rest of the house starts to eat healthier as well. Best wishes, Megan
  24. Lisa, I am so sorry! I think that is one of the hardest parts of all this, we can try to minimize our kids tics but unfortunately we can't always protect them from other kids reactions...that age group can be particularly blunt and prone to teasing. Is your youngest also on the multi and Natural Calm? So far the multi is not changing our three year olds "tic" but it seems to be helping with our seven year old. I think, unless it is just keeping her off dairy?...who knows. I now have all my kids taking the multi and epsom baths regularly, hoping it may have some preventative action...sometimes it all just gets overwhelming again no matter how far we think we've come. There are days I think what are the chances that he would be the only one out of four? What if they all start? Am I strong enough? Don't know that either, but like you said...talking to parents who get it and live it is such a relief. Please keep updating... Megan
  25. Latest update...things are still going pretty well for ds. He has a throat clearing tic that is lingering and acts up every now and then. Have eliminated oranges, and tomatoes completely now after "challenging" them and getting increased tics. Bananas are my next challenge (sure hope not). Have added back kefir on a rotation and so far, so good...he is so happy to have granola and kefir again!!!! Definately have stopped fish oil and vitamin D, seen them increase his tics time and time again. He asked today if we could add his Natural Calm in the morning as well, will give it a try. He feels it would be beneficial. Are you kidding me? He's 9, and so on top of this! So impressed That's it on him for now. Have not seen any anxiety issues either since being on his multi so doubly impressed with the direction things are going with him. Not a cure...but definately a huge improvement! My best to all, Megan
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