candikane
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Posts posted by candikane
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TS naturally waxes and wanes too, so it may just be it's natural wax going on. Changes in seasons also tend to flare kids up. I would also be curious if just the activity/excitement of the before school club may be flaring him up. I agree that diet and environmental can definitely have an effect, but sometimes it's just the natural wax going on. You're pretty amazing to be so caring and involved!
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I'm pulling my daughter from public school, just Math right now to "test the waters" and get her caught up, and if everything goes good then she'll be completely homeschooled. I know it's very common for TSers to struggle in math; what math curriculums have worked for you? Right now I'm looking strongly at Calvert and Math U See.
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We use the minimum dose of Tenex as well, which thankfully is working for us, but normally the first choice next to guanfacine (Tenex, non-extended release) is clonidine. You could try the extended release guanfacine too and see if that works better.
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You can contact TSA for a list of providers as well
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Hi all. My daughter is 6.5 yrs and has displayed tics (both vocal and motor) and OCD issues since 4.5 yrs old. She was diagnosed with a tic disorder and we were told to watch it over time and see what it does. It has constantly been on a wax and wane rollercoaster where they will slow down and eventually stop for a LITTLE bit and then gradually 1 will start, another, another, and eventually have full blown increasingly horrible tics until they gradually start to decrease again. The doctor had told us it could be Tourettes but unless they were seriously affecting her life they wouldn't medicate because of the strength and severity of the only meds avail and their side effects. We have been just dealing with the tics since that visit 2 years ago.
Back in this past July my daughter was examined by a pediatric gastroenterologist for severe stomach aches she was experiencing. He put on her a low dose of Citalopram to relax her intestinal and stomach muscles to reduce the stomach aches. Since being on this medication, we saw a drop in tics. I didn't really realize it since I was so used to just ignoring the tics for my daughter's benefit. Looking back now, I'm pretty sure there was a huge drop in both the occurrences and severity of all tics.
Fast forward to the past 3 weeks. I had my daughter off of the medication due to insurance issues (they were messed up and kept saying my insurance wasn't active, although it was! It was a big back and forth debate between the Pharmacy and my insurance company). Anyway, she was off the medication for about 3-4 weeks. Suddenly she had this intense uproar of tics. They were so bad she looked like she was having seizures, and cried all day because they hurt her (her neck would literally crack and snap because she was whipping it forward and backwards so hard). I got the insurance corrected and grabbed a refill of meds. I started her on the meds again hoping that was cause of the issues, and after a few weeks the tics did lower in severity (or are they just lowering because they always do??).
I started a new insurance that I changed in November at the beginning of the year, and decided to set up a Dr appt. for last Friday with the new pediatrician. Good thing I did, because the same day of appt. my daughter complained on a sore throat and left school early. The Dr. did a throat culture that was negative with rapid results, but after sending it in to culture it, it did come back positive. They said it was not the common strain though, but something like Strep CEG? A less common strain. Her throat seemed to be not bothering her anymore so we skipped the antibiotics, although last night she started complaining of sore throat again.
My question is, do you think the medication was suppressing tics and stopping them caused the uproar? Could it be the strep infection causing the uproar? She had complained of sore throat before the tics increased as well, but it was only a little and no other symptoms so we never brought her in to the doctors. Could it have been strep then, and still positive 3 weeks later? I'm thinking of calling the Ped back today and asking for the Amoxicillin. Any advice/opinions is appreciated
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Hello all, I've been trolling these forums for some time since reading the Natural Treatments book. My daughter is 6.5 years and has been dealing with tics since 4 years old. She was diagnosed with a tic disorder and we were advised to just watch the progression. The Dr advised us that after a year it would be diagnosed as Tourettes if the condition persisted. No medications or treatment referrals were given.
My daughters tics always come and go, normally developing a new combination of tics when they come back. In the beginning it would be new tics, but then seemed like it was always the same 10 or so tics, but in different combinations (both motor and vocal). They seemed to have been gone for quite some time and I think it may be related to an antidepressant medication she was on for IBS (a much lower dose than what would be given for depression, it was prescribed for it's ability to stop intestinal/stomach cramps well). I stopped this medication due to fears from research about the brain losing it's natural function on handling sertonin, dopamine, etc after being dependant on a drug doing it instead. Since this time the tics have come back full force, including a new set of never before seen tics as well (such as yelling, and an extremely HARD head thrash). I absolutely HATE the ideas of having my child on drugs, but actually went ahead and restarted this medication until something better can be found and started. My poor child is in PAIN from this tic, and I feel like a horrible mother if I hold back something that "may" have been helping decrease and/or eliminate her tics.
I've been doing research into natural therapies and how to go about doing an elimination diet on my own. I hate that insurance doesn't cover naturopathic doctors! What a country we live in. Anyways, I've been feeling completely overwhelmed on where to start and what to do. I'd like to explore the area of food sensitivies and allergies as a number one step, seeing as I have numerous food and chemical allergies/sensitivities and feel it's a great chance that she does as well. However, I feel overwhelmed to the max on how to get this done. I don't have the financial resources to pay out of pocket for testing, and I haven't yet found a doctor willing to believe and agree with my mindset and do the testing. I'm also really afraid to put my daughter through the pain of the testings.
I've recently found a doctor not too far from me, Dr. Bruce Semon in Milwaukee, and his website talks about yeast overgrowth causing things such as tourettes, and also abdominal pain (which my daughter also suffers from constantly). Does anyone have experience with an anti-yeast diet? Is there truth behind this? Is it a resonable first step for us to take? I'm more than willing to travel the distance if this Dr can accept my insurance. Otherwise I guess I'm back to square one anyway because I don't have the money to give them. I'm out of work right now on medical leave, and fighting with my short term disability administator whom keeps denying my claims! So needless to say, I am flat broke.
Any other tips or info that could help me? I'm at a loss and just want to do whatever I can to help my daughter.
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Wow, this is so absolutely refreshing to find. THANK YOU!!!! I've decided to just start an artificial perservative/color/flavor & msg free diet for my daughter, and I felt completely overwhelmed, confused, and worried about starting it. It seemed like such an insane task to look at every single thing she eats now and (probably) changing it all. And then to find what she can, and WILL eat. WOW. This list has helped SOO much for a base, thank you so very much for posting it!!
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Hi,
I see you have Dean Insurance?? Are you located in WI...you can pm me if you feel more comfortable. We are in Madison.
Yes! I'm about 25 miles from Madison!!
I'm not sure where you are located, but Dean does have some doctors that are more open to alternative treatments. We have used a DAN doctor in the past, and currently work with a naturopath in Madison for the past 2 years. My son is 6, and our pediatrician is understanding of what we are doing, he knows we work with a naturopath as well, and it feels like we have a good team. But it did take a long time to find the right docs. We shop at Whole Foods and Trader Joes, the co-ops are great as well. We are GF, CF, and soy free. The diet completely changed our life, we emptied our cupboards, there was nothing left! But slowly we figured things out, and the diet became much easier. We could never go back, we are all so much healthier because of our son. My son does not have tourettes, just tics mainly associated with food and outdoor allergies. Do you have any family history? Let me know if you have any questions, I know how completely overwhelming and depressing your situation feels right now - but it will be ok, you will do what you need to do, and this forum will provide you with answers and hope!
I work in Madison and we spend most of our time there (entertainment, shopping, etc) so a Dr in Madison is no problem at all. I've seen numerous doctors and it seems like I can't find one to really listen and care, and try to help! I feel like I have to be her doctor and just tell the Dr we see what to do and what tests to run. It's insane. I want someone who cares enough and knows what to do and what will help!
My daughter doesn't "officially" have Tourettes, but she's had a tic disorder for over 1.5 yrs, so I'm sure it would be diagnosed as that if I continued to bring her to different doctors. I gave up the dr search because I received the same information.... nothing can be done. It might go away. It might get worse. --- REALLY?! How helpful. (Atleast it was a better answer than the guy who told me that my daughter had tics for attention, because I didn't "give her enough love, or attention"!!!!)
I'm not aware of any history of Tourettes or tics, but definitely a history of food and other allergies (myself included). I wouldn't be surprised to find out she had allergies as well. Possibly the cause of these tics, stomache aches, constipation, and lately aggressiveness. She was always such a calm, VERY well-mannered, very loving child. She basically has mood swings now of aggressiveness, I don't know where it comes from. I blame myself for the all the pre-processed foods now
Is the Naturopath doctor you see covered with insurance? I don't think the state of WI allows any to be covered under insurance, right? Or are their certain procedures/tests they do that are covered with some insurances? I've read both ways. What a hit to the high I was feeling. Out of pocket would be really difficult for me, being a single mother.
Do you mind me asking which Dr you use? I've tried probably 10 pediatrician and family medicine Dr's for my daughter and have yet to find one that I feel really cares, reads charts, wants to help, etc. It's sad really
I felt some hope the second I found this board, and even more upon finding you... a local! Thanks for all the great info so far! I'm getting that basically to be free of all artificial perservative, colors, and flavors... I could go all Organic? How would you compare between Whole Foods and Trader Joes (selection, price), and have you been to the Willy St co-op at all? I'm North of Madison.... so Whole Foods is a good hour+ away for me. If it's by far the best though then I'll be heading that way!
Thanks again for all the info!!
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I've read some rave reviews on this, but the price is a little steep for just a reference of brands, isn't it?
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Hi,
I think you'll find this website helpful!
My quick recommendations: read the "Helpful threads..." and "Finding medical help" links at the top of this forum. You'll get information for two of your main concerns (what kind of dr. you might seek out, and what kinds of tests to start with).
We found an environmental dr. who has helped guide us through some important testing. Most beneficial to us were the food allergy tests (the skin prick kind). Armed with information from those tests, modifying our son's diet was more of a manageable task. But it was still hard, and indeed overwhelming at times. And yes, it starts by spending twice as much time (at least) making your shopping list and doing your shopping. Every detail on the ingredients list is relevant. But, if you stick with it, you develop a routine and it's not long before it's part of your lifestyle.
The other most important findings I have had have come directly from the very very helpful people on this forum: eliminating all artificials and all preservatives, eating as organic as we can, supplementing with magnesium (and incorporating epsom salt baths), and supplementing with a potent multivitamin. If you read around you'll see lots on all of these important starting steps.
Good luck; I'm hoping things will be better for you and your daughter soon.
Chris
Thank you! I'll definitely get to reading and hopefully find a good doctor in the area for help. I've planned to start cleaning out my cupboards today and replacing with organic foods. It's pretty insane to see some of the ingredients in some snacks of my daughters that I THOUGHT were healthy... like our Welch's fruit snacks for instance. I never realized it had so many additives
Thanks for the reply! -
Hi,
I see you have Dean Insurance?? Are you located in WI...you can pm me if you feel more comfortable. We are in Madison.
Yes! I'm about 25 miles from Madison!!
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I recently purchased "Natural Treatments for Tics & Tourette's: A Patient and Family Guide" and have been reading it non-stop. I have a 5.5 yr old daughter who has had numerous motor and vocal tics for 1.5 years now. She was diagnosed with a tic disorder, possibly Tourette's, and we were told there's nothing that can be done to help her. The DR told us about medications but that they are brutal and wouldn't be prescribed unless the tics were severely affecting her life. We have yet to go back.
I've been researching online and visiting different forum boards for different ideas and approaches being used. I found this website in the book I mentioned earlier and figured this was the place to be.
I'm willing to do any hard work that needs to be done as far as changing her diet, lifestyle, etc. Mine included. I'm just so overwhelmed with what I've read that I don't even know where to start! Do I do allergy & environmental testing first? Is it covered under my Dean insurance? I'm not sure I could get a conventional doctor to "just do it". They haven't up until now seemed to care about any sort of treatment available for my daughter, and from what I've read numerous times online, they're not too keen on "natural" treatments of any kind being successful. I'm pretty certain that the kind of Dr I would need is probably not covered under Insurance!?
I feel like if I try to just start with changing her diet I'm going to be way too overwhelmed to make progress with it and pinpoint what is causing the issues. Do I just pull a random food from her diet? For how long? What do I start with? I hear gluten and dairy are the two biggest food triggers, followed by artificial colorings/flavorings, etc....
How DO you even find foods that DON'T contain these products? Do you just spend 15 hours in the grocery store searching every single label? I know a lot of things are also listed by NUMEROUS different names (such as sugar, and high fructose corn syrup), so how can you honestly know exactly what to look for?? Are there any "shopping lists" possibly that others have created with specific foods, and brands, that are usable?
What about vitamins? I've read of a few different brands offered, but I'm not able to find those specific ones to buy. Could someone offer a children's chewable vitamin/mineral supplement that I could find? Do I start this right away? We haven't been vigilant about vitamins, but currently have "Disney MultiVitamin Princess Gummies", and I never realized these might have additives that are affecting her! Here's the ingredients list I took from offline: Corn Syrup , Sugar , Grape Juice Concentrate , Gelatin , Modified Corn Starch , Citric Acid , Lactic Acid , Purple Berry Color Concentrate , (Maqui Berry Juice Concentrate , Sugar) , Maltodextrin , Fractionated Coconut Oil , Beeswax , Dicalcium Phosphate , Natural Flavors , Black Carrot Juice Color Concentrate , Silica , Annatto Color , Mannitol -- No artificial flavors or colors
I feel so lost and hopeless right now and I hope this forum will help give me a little hope. I'm a single mother, working full time, and I feel completely desperate right now. I really want to find answers before the tics begin to affect her social life as well. She's at the age where kids are starting to become mean and I really hate to think of how her school life will become if this isn't brought under control soon.
Sorry for the essay, I just felt a tiny pinch of hope when I found the book, and this forum, and really hope I can get something going for my daughter. It's refreshing to feel like my daughter and I might be understood as well, and have a place to call "home" for support, tips, ideas, and positive outcomes.
My 7 year old son and Tics
in Tourette Syndrome and Tics
Posted
You should definitely see a neuro to rule out any other disorders/diseases.