mommyfor4
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Posts posted by mommyfor4
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Hi Cidermill, we do not get the flu shot. My thinking is although the flu stinks, the repercussions of messing with our ds already out of balance body outweighs the possibility of him suffering through a flu. He has always been reactive to all immunizations etc. so for us it is the lesser of the two evils. I am not convinced that vaccinations are safe for him or even his siblings for that matter, but I still struggle with what to do about it. His youngest sister (3) still needs to finish out her regular schedule vacs. and I have this mental battle with myself regularly. I held off with all my kids and yet three out of four have always reacted adversely. Should be an easy decision but yet going against conventional advice from Dr and other family is soooooo hard. All I can say is trust your gut, if you feel uncomfortable with it, you're probably right. I hope I can take my own advice.
Good luck,
Megan
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Hi Lele,
I am convinced that our ds tics are exacerbated by immunizations. He reacted to every one I can remember even before his tics manifested. In fact, I am struggling with whether to even finish out our youngest daughter's schedule at all (she is 3-but I have held off on many vaccines to date) as she too has had reactions...fever and what I can only describe as neurological upset. Our naturopath has strongly advised we stay away from the flu shots etc. especially with our ds- and past experience with him seems to prove his concerns are valid. It's a difficult thing to work through, I wish you the best!
Megan
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Hi Rick! This may jump all over but here goes...you can do a total elimination diet (this is what you are attempting) and add back over time but this is pretty huge! I agree with Cheri that what most of us use is eliminating a food group or groups and then challenging them if even necessary. For us, some were so obvious we didn't need to challenge them. Once we took our son off wheat, I remember him having a monstrous waxing before it got better. The same with dairy. It came about a week into the removal and lasted about a week.
Our ds loves blueberries and they dont seem to be a trigger, but I highly suspect tomatoes and am about to try eliminating "night shades" for a bit. ..
The only questions I had about your triggers right now were the tomato, possible soy (definately not good with our ds) and some gluten intolerant individuals cannot have even oatmeal...Our ds has it but not on a daily basis and must be a high quality oatmeal.
Maybe your stress is over the diet and trying to track everything all at once. I found when we started I was on a mission to find out any and all triggers as quickly as possible...I found out it doesn't work that way...sigh
At least for us it is an ongoing thing and focusing on main food sources first....wheat, dairy etc made it easier. We are 3 years in and have his main triggers, but there are still times we need to eliminate and challenge a food. It may take some pressure off to go after the BIG ones first and then make a list of other food groups to try over time.Three kids can be stressful,(we have 9,7,almost 5 and just turned 3) let them be your exercise and stress relief...and if all else fails: get out ALONE with your wife, sounds like she is very supportive and involved, that's a real blessing!
Best wishes, Megan
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Thank you Lynn, that was beautiful! It is amazing how so many people point out a sunset, or a lovely day and forget the "marvel" right in front of them. I am blessed to have four of these marvels and I intend on reminding them soooo much more often just what they are! Happy Canadian Thanksgiving.
Megan
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Okay... so I spoke/typed too soon! The last few days have been so difficult for our ds, especially at night as he's trying to fall asleep. It hurts just to listen to him, what I wouldn't give for him to have one tic free evening! But I do have to say... I agree it seems to be change of season, change of allergens. I have no proof but these vocal tics are one's we associate with seasonal allergens, Imagine classic allergy symptoms clearing throat, cough etc and amp them up and these are his "waxing tics". You have me thinking even more now! His naturopath also commented that his tics are "allergy" sounding. Definately tics...but maybe something to look into even further, especially now while he is waxing...thanks Bonnie for the maybe unintentional push
Megan
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Hi Rick, I'm sorry I shouldn't have assumed you know our story. I mainly post regarding our son who is 9. My husband definately had/has TS. He has largely outgrown most of his tics but there are still some that as I said are mild and more transient, mostly due to stress and once again beer is an obvious one for him. Much to his distress!
Our son's diagnosis is Chronic Vocal Tic Disorder and his vocal tics are very similar to what his dad had at his age. My husband was never diagnosed and in fact did not even know what he had or what to call his tics until we started researching our son's "symptoms". So far only our oldest son has this, but his next sibling a sister has presented with transient tics, although changing her diet as well has so far eliminated any tics, fingers crossed. We'll have to wait and see for the other two girls but hoping a clean diet etc. may be preventative....you never know...again good luck with the elimination diet, it is a bit overwhelming, but the results for us were soooo worth the work!Megan
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Hi Megan,
We are doing a Gluten, Dairy and Soy Free Diet and I think it has helped with the tics and either exposure is helping with the fear or the diet is. How did you find out about your son's food sensitivities?
God Bless,
Trish
Hi Trish, just like Melissa's son our ds9 with Chronic Vocal Tic Disorder also shows some OCD behaviour and it is shockingly similar! If he showers he needs EVERY light on upstairs unless one of us is there and TV or music in the background. He has always been very tactile, needing to rub exposed skin. This has diminished some but still there. I think age has helped just learning the appropriateness of touch and when and where is appropriate. He also, when waxing, needs to mentally count, for example light posts while driving. (My husband tells me he also had much of this as a child. He too, had TS or chronic tics. He had to corner touch, count etc.) DS has persistent fear of death and living forever in heaven, extreme anxiety over needles etc. These have lessened over the years as we have gained headway with food sensitivities etc and age seems to allow him to control them some but they are definately there.
Megan
Hi Trish, we did elimination diet and still now if we suspect a trigger food we do a challenge with that food, it is an ongoing process. Right now we suspect pesticides, so are 100% organic when possible, and will challenge some fruits that we suspect when he seems to be baseline. He will not have any tests that require needles so this is slower but keeps his anxiety down. For now I need him to feel like he has some control over the method and he has been really on board if it means no needles!
All the best,
Megan
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Hi Rick, caffeine can definately be a trigger...not that I would want to give up my morning coffee! And my husband still finds beer is a trigger for him even though his tics are generally transient and mild by this stage. Our naturopath pointed out that beer is not gluten free, hops and wheat...he seems okay with the odd scotch at night or for him red wine is fine. It will probably again be trial and error. Good luck!
Megan
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Hi Bonnie...ours starts a little later...maybe a Canadian thing! Oud ds seems to start in November and struggles through until February. In fact, I even tend to warn his teachers as this time approaches. It seems like we have two seasons, winter viral, and summer humidity...doesn't leave much in between
Megan
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Hi again. I wanted to add that I suspect that I still need to do more food elimination. I am reading about people removing cheese, wheat , milk, and soy. Also I read removal of artificial flavor/color. Very happy to do that as well, but wow -- these kinds of foods are found everywhere. I only drink flavored mineral wAter now, and am somewhat surprised to learn the lime flavor could be an issue. I did an allergy test and they found no allergies. Any thoughts?
Hi Rick, welcome! Just wanted to add that classic allergy testing will not necessarily show food sensitivities or intolerances so an elimination diet may be helpful. We found our ds9 was intolerant to wheat, dairy, soy and all artificials, and preservatives this way. He also needs to eat organic as pesticides cause reactions as well. The other thing we found was purified water, our town water had chlorination which we now know is another trigger for him. I wish you the best and as Chris suggested a good enviro doc or naturopathic dr is a big advantage.
Megan
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Hi Chris. Glad to hear you feel like you are on the right track and that things seem to be working- at least to bring your ds to baseline. We have noticed the same results with diet, supps., especially mag and omega'a and epsom salt baths as well. We have the odd waxing but it seems to last for a shorter duration and as you said, we can usually find a possible culprit. Thanks for your update...may I ask what you learned about dmg? Hope things continue to move forward for your son. Best wishes. Megan
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Hi Trish, just like Melissa's son our ds9 with Chronic Vocal Tic Disorder also shows some OCD behaviour and it is shockingly similar! If he showers he needs EVERY light on upstairs unless one of us is there and TV or music in the background. He has always been very tactile, needing to rub exposed skin. This has diminished some but still there. I think age has helped just learning the appropriateness of touch and when and where is appropriate. He also, when waxing, needs to mentally count, for example light posts while driving. (My husband tells me he also had much of this as a child. He too, had TS or chronic tics. He had to corner touch, count etc.) DS has persistent fear of death and living forever in heaven, extreme anxiety over needles etc. These have lessened over the years as we have gained headway with food sensitivities etc and age seems to allow him to control them some but they are definately there.
Megan
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Hi Chris,
Although our ds tics are mainly vocal, they do center around his neck and chest, almost respiratory (only way I know to explain them) coughs, grunts, extreme throat clearing, squeals, exhaling etc. He has always held ALOT of tension in his neck area, not crazy about it being touched and complains that reading and doing homework stresses his neck. We have found that using a book prop has helped so he is looking ahead and not down and (thank you Chemar) the epsom salt cream, we added a tiny bit of lavender in as well. We have had good results with Castor oil rubbed down his neck at night, he's not crazy about the stickiness but is willing to do whatever might work (aren't these children amazing!). The last thing ties into his Chiro treatments, he taught us massage for his neck(again not his favourite due to reasons above) and back and taught our ds easy stretches when he feels his neck tightening. Nothing too complex but he needs his regular chiropractic, he will not allow his neck to be adjusted so his chiro works around this with acupressure and massage, not optimal, but thank God he respects our ds limits!Glad to hear otherwise your son is doing well thus far in school, we are happy to report the same, I pray it continues through virus season, always a rough time for our ds. Take care.
Megan
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Hi kamkoop01,
I agree with giulia, just because the traditional allergy test did not show allergies does not mean there aren't sensitivities. These will not show up on a traditional allergy test. Our son has sensitivities to wheat, dairy and artificials as well as some more things. We found these out by elimination diet and a diet diary. Other triggers were trial and error. We found cleansing our home of chemical cleaners etc. made a difference. I can totally associate with your panic, have been there, probably will again at times. Using a naturopathic doctor or enviro physician can be a big step to pointing you in the right direction and soothing some concerns regarding supplements. I am also someone who is cautious even with supps. so a helping hand with getting what he needs through diet and sifting through possible food etc. sensitivities is a real comfort. We find the Natural Calm as well as epsom salt baths have helped our ds with his restless sleep and diet is definately trial and error. Have a good cry and then make a plan. If you havent done any elimination diet maybe that's a good place to start, going as clean and organic as possible. I wish you the best!
Megan
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Hi KellyL39,
I can only tell you what we have seen with our ds9. He has had chronic vocal tics since about the age of 6. We first noticed dramatic improvement by removing wheat. In those first months we would quickly realize when there was a hidden wheat because that particular tic would rise again. He called it "his wheat tic" , he could even explain how it was different from another. Over time we have generally found that a sharp rise in tics was tied to too much of an offending food, or other trigger. Often it is also a sign he is getting sick. He still has tics everyday but over time we have been finding more triggers. Some are unavoidable like viruses and when it's really hot but I do feel most times (at least for us) that it is related to a trigger or something his body is missing. Still trying to find a really good balance ourselves but have seen pretty consistent changes over the last three years not only with his tics but his general health as a whole. Hope this helps even in a small way.
Megan
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Hi Megan,
I don't know the specifics of your case, but it sounds like my son may be similiar. I would really look at the feingold diet and the effect of salicylates. It made a big difference for us, the clue for us came when Zack was doing realy well then had about 5 red grapes and went ballistic. I found the naturopath for us was a little off for Zack. He was eating blueberries and raspberries like no tomorrow and was out of control.
Chemar -- what does the Royal Jelly give you?? I haven't read it anywhere, TIA
CDNRaider,
Thank you, I have a great list of subjects for the naturopth. I have read up on the Feingold diet but have not really gone past removing all artificials, preservatives, chemicals etc. He is off wheat and dairy (except yogurt) but he loves fruit and veggies, so I have not really looked too closely yet at which could be triggers. My gut feeling says there are issues there, I just wasn't ready to tackle it yet. I will definately be looking into salicylate sensitivity after both you and Chemar twigging onto it. After reading more about it, it seems very probable. Gave a challenge just now with red grapes will be interested to see. Thanks again and please keep updating on your ds, nice to compare notes especially if they seem to have similarities. Megan
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Cheri
Thanks, we have an appt. next week so this gives me some good areas to discuss with him. He has not yet mention L-carnitine, but to be honest, our visits have been sporatic at best, while seeking a diagnosis and working through elimination diets etc. After being patted on the head by so many Dr.'s , I guess I just gave up on all of them for a bit, even the good ones and started manically researching on my own. Time to trust the good ones and have some patience with the process. Not easy for a type A personality
I cannot express my gratitude for all your quick answers and support. Megan
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Hi , I'm sure this has been asked before, but if I am using Royal Jelly as a multi do I need to supp. other B Vitamins (I see alot about 6 and 12) and would it still be benificial to have something for minerals? I feel like I'm at info. overload, looking in too many places for triggers. I guess I should restart with what his body is not getting. He is on Natural calm, 1000 iu of D, Omega 3, and probiotic yogurt. He's still off gluten, dairy and artificial everything. What am I missing? His naturopath is supportive but I dont think Chronic Vocal Tic Disorder is his specialty. He is helping to weed through food sensitivities etc. maybe I'm just feeling impatient because my gut says it's what he's missing that I really need help with. Trying to be positive and patient. Thanks for any advice. Megan
Also he seems to pretty reactive to a fair amt. of fruit, is this indicitive of anything? Leaky gut? Candida?
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Hi Lenny,
Your post brought me to tears...our ds9 has come some ways but we are still in the middle of searching and trial and error. There are so many moments when it all feels so overwhelming and every waxing moment is like a punch in the gut. Thank you for your update, it revives my resolve to continue searching for answers for him. You have no idea how much hope this brings and a reminder that prayer isn't always answered with an easy solution... but they are answered. Thank you again and I celebrate with your son and family!
Megan
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Megan
do a search on this forum for screens under the user name Claire and you will get a lot of info on photosensitive induced tics caused by flicker of screens that are not LCD
Cheri,
Thank you again...I see I have alot more reading to do. I knew it was sensory in some way but this clarifies so much. I didn't even think to look into why, I just assumed it was a by product of sorts of the disorder itself. It seems every corner you turn their bodies are desperately trying to tell us what's not working for them. I just wish it were easier to read the red flags
Megan
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We also notice increased tics when our DS9 used his Nintendo DS, Playstation etc. not so much with the computer. I personally believe it's a sensory issue. Fast changing graphics, lights etc. but the body is not engaging to the extent of the brain. We have found that certain games are worse than others. Any Japanimation games e.g. Pokemon, etc are particularly bad, even when watching TV. A close friend of mine had also noticed similar reactions in her son, tics, moodiness, edginess after playing. We still allow his DS but only in 1/2-1 hr intervals (appartently you cant do much in this amt of time
) and follow it with some form of outside play. Usually this minimized his mood and tics but if he is already in a time of waxing tics we try to avoid all together. He is somewhat on board I guess any time is better than none at all!Megan
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Yes thanks! I am not trying to disparage anyone from butterbur, I too have heard good things. My understanding is the concern centres around how it is processed and the toxins released if processed inefficiently. I was more suggesting a good brand name and being aware of who you buy from and how it is tested and processed especially in use for kids. It was just a reminder to me that all product is not created equal.
Megan
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Hi everyone, just wanted to pass on what I've read and discussed with my Chiro and Naturopathic Dr. Although there are great results for some people using butterbur extract it is not recommended for kids under 12 yrs. You may want to discuss with Dr. before adding as a natural antihistamine or find alternatives, honey, grape seed extract etc. Just some food for thought....
Megan
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Thanks Cheri,
Just a few more questions. Is it something that has to build up in his system or could it be used more like a PRN when waxing? Hot and humid here right now and tics have exploded as usual especially after recess at school, how long do you generally give before seeing +/- results? Thanks for all your wealth of info.!
Megan
At least for us it is an ongoing thing and focusing on main food sources first....wheat, dairy etc made it easier. We are 3 years in and have his main triggers, but there are still times we need to eliminate and challenge a food. It may take some pressure off to go after the BIG ones first and then make a list of other food groups to try over time.
) and follow it with some form of outside play. Usually this minimized his mood and tics but if he is already in a time of waxing tics we try to avoid all together. He is somewhat on board
Too much vitamin A?
in Tourette Syndrome and Tics
Posted
Just a thought...could it be the brand of Cod Liver Oil? Is it liquid or gelcap? It could be the gelcap itself. Our ds reacted when we started Royal Jelly and found it was the soy in the gelcap that set him off. I don't know about the vitamin A though. Hope you find the issue!
Megan