Sheila
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Posts posted by Sheila
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Hi -- you are making some very positive changes.Good for you. So glad you are reading labels now.
It could be that an air purifier in the bedroom with a HEPA filter would make a difference, if you can afford that. It is important that the bedroom be allergy free. Can you steam clean his carpet or whatever the powder was put on?
Do you have a doctor/naturopath who could check to see if he has an intestinal candida yeast infection and needs an anticandida medication--and could determine if he has a nutritional imbalance?
Hoping you see real improvement with your efforts!
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Hi -- sorry for the delay. I heard back from the neurologist who also thought there could be an emotional component but could not say based on the short video. He thought seeing a pediatric neurologist as you plan for a second opinion, was a good idea.
Where do you live? Am wondering if it makes sense to be tested for Lyme based on where in the country you are?
Also, a suggestion -- I would remove the link in the opening to your first post, so that in the future it will not be readily available for sharing. (You know you can always remove the link on YouTube when you are finished with it,and I assume it is being shared privately only with those you give the link to.) I mention it because when he is older he will not want this to be seen by others. This is a common issue that comes up with forums, especially when parents use their full name and it shows up in a search.
You might want to keep a log about diet -- symptoms along with list of foods/drinks to see if anything seems connected. And also avoid any scented products and standard toxins/cheimcals in the home. Are you familiar with that approach, as a support to other therapies?
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It is good to read that your son is so well rounded and socially is doing fine. Glad you can get a second opinion, even though you have to wait a few months.
I have passed the video to a neurologist to see if I can get any feedback. Will let you know if I hear anything.
In the meantime, it would be good to have your boy on as healthy a diet as possible (no artificial flavors, colors, preservatives--and low sugar--for starters) and in a "green" (natural--no scented products or standard chemicals in cleaning products, etc) setting at home if you have not yet done so. That's just some unsolicited advice.
Can you think of anything that changed starting a couple of months ago? Either with his health or with his environment?
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Hi blackwater and welcome to the forums. I will let others answer about approaches they have found helpful for the symptoms you describe. I just wanted to give you a link for all the effects that sertraline (Zoloft) can cause. Many people have negative reactions to it. Please see here.
Also you may wish to look into an allergy connection to your movements since you mentioned sinuses. This book addresses that along with other issues. Read about the book here (it is on Amazon).
I hope you find the help you need! Sheila
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Hi Suzanne, I know I replied this morning to the Shake 'n Vac post. You mention that your boy has horrendous tics "again" --he is now 9, When did they start and what happened?
What is the date of the neurologist appointment? Is it coming up soon in December? Hopefully the doctor will do some blood tests and you could get a referral to an allergist or however things work there to obtain allergy testing. Also request if you he could be tested for a bacterial or vital infection. Generally neurologists do not look at immune issues but because of the PANDAS/PANS connection to tics, they are now more open to it. Find out he or she is familiar with PANDAS and could test for it.
I would consider seeking out the help of a nutritionist. Magnesium can be good but it alone is not a miracle mineral for everyone with tics. Since he was born so prematurely your boy may have a number of issues that need to be addressed.
It is great that you are on top of things while you seek to find answers. Please give your young son only healthy food with no artificial additives like flavors, colors and preservatives, and have a "green" home with no standard chemical cleaners and no scented products. Meanwhile aim to get some professional help in assessing his nutritional status and potential allergies, as you are doing. We hope the neurologist also has some helpful advice for you. Please keep us posted! Sheila
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HI Charlton, Welcome to the forums.
I'm sorry to read about your concerns with your daughter. Your detailed description of her issues is very interesting. It does seem that allergies are a significant key to her difficulties. This is a common link in kids with tics.
When did you start all the interventions you mentioned in your note (nasal spray, changing diet, etc)?
Have you seen any improvement from those yet?
Did the pediatrician have any advice?
You might want to contact this clinic to see if they have any recommendations closer to you. https://invitationtohealth.com.au/
I mention it because it is listed on the American Academy of Environmental Medicine website for referrals showing that Dr. Yeoh attended training with them and they offer many of the approaches that have been helpful for some with an allergic connection to tics. I hope that is some help. I'm sure there must be others who focus on nutritional support.
Please consider getting our book, if you have not done so. Natural Treatments for Tics and Tourette's.
We will watch for word back from you. Sheila
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Hi lbass, I apologize that I just noticed your post. Welcome to the Forums.
I think it is very good that you planned to see a pediatric neurologist. Can you please tell us how that appointment turned out? What was the advice?
The motions in the video are not typical tics but we are not qualified to judge what type of issue it may be caused by. Sometimes kids do an exaggerated motion to cover up a tic. Again, it is hard to know what is going on from the video. We are interested in learning more and knowing how your son is doing.
Please do let us know.
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Hi gladiator16, I hope your son is doing better today. You mention Shake 'n Vac, which I was not familiar with.
To answer your question, yes it could be the culprit for your son's tics getting worse. It sounds like another dreadful product from Glade and marketed in the UK. Glade makes a range of scented products with ingredients that are considered toxic.
The intent is to sprinkle it on carpets to "freshen" them up, and then vacuum the powder up. This is the description:
"Keep your floors at their most lovable with Glade® Shake n' Vac. Eliminate deep-down odours on carpets and rugs, and freshen your home with a variety of Glade® fragrances to ensure you always have something soft and loving to come home to. "
They offer this safety precaution though it took a while to find this online: "Keep out of the reach of children. Remove pets from room before application. People suffering from perfume sensitivity should be cautious when using this product. "
One site lists these ingredients for the lemon scent:
- Fragrance. 3,7-dimethyloct-6-enenitrile; 3a,4,5,6,7,7a-hexahydro-4,7-methanoinden-6-yl acetate; citral; decanal; dipropylene glycol; hexyl cinnamal; linalool; methylbenzyl acetate; octanal; terpineol. ...
- Sodium SulfateFlow Agent. ...Calcium CarbonateCarrier. ...DolomiteCarrier.
I would suggest you open your windows, toss the current vacuum bag, vacuum the carpet repeatedly with a new bag, throw the new bag out when done, and steam clean your carpets with unscented natural soap or only hot water. Be sure it dries thoroughly.
Your son needs fresh, clean air. What you did is very understandable as it seems this product is popular in the UK, and other Glade products are very popular around the world. Millions of people use them.
Is there a reason you needed to do this for your carpet? Do you have a pet?
I'm glad to read that you purchased the book, and I hope it is helpful to you. It in you will see the recommendation to avoid scented products in general.
Please do let us know how your boy is doing today. We care about you and your family and are hoping he will be better soon.
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Hi EmilyGirl, welcome to the forums, and I'm glad you wrote. You have been through so much. It says a lot that you are willing to reach out. You have classic OCD symptoms and then on top of that, such traumatic incidents to deal wtih. No wonder you are exhausted.
We would love to hear more about where you live, and what options you have for getting help so you don't have to continue to struggle with all of this. We are glad you do not intend to give up! Hang in there. It could be that a medical problem causes some of your fatigue and there is help for that. Please write back and tell us more. We care and want to do what we can for you. Sheila
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Hi and welcome to the forums. I'm sorry to read that your young child is having difficulties. We know that feeling of having no direction to turn to in how to help your child after a visit to the doctor, and hope you find answers soon.
You have asked such an important question. There is not one perfect answer, as cases differ. But the Great Plains Laboratory has come up with a set of tests that you could consider. The lab can consult with the doctor/nurse if there are questions. You could review this list and see what seems to make a connection for you.Generally, insurance will cover some but not all of them. I do not know about Canadian insurance though.
https://www.greatplainslaboratory.com/tourettes-tics-and-ocd/?rq=tourette syndrome
Please see what you think. Did the symptoms come on suddenly or gradually? Feel free to share more about your situation. And am sending best wishes to the whole family.
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Hi -- TicHelper is an online program that focuses on behavioral training to reduce tics. This is their FAQ link below -- you will see that it costs about $150, and other questions are answered. I'm not sure if any of our forum members have tried it. Hopefully we will find out.
tichelper.com/faq/
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Hi Matthew, Thanks for posting. it sounds like you have been able to figure out some of your migraine triggers. There seems to be a big overlap between things that trigger migraine and that trigger tics.
Can you tell us what has happened with Cozy Shack puddings? I am not familiar with them, but when I went online to check their site there were several versions and I'm curious what is now a problem for you. What are the ingredients and for which ones? It might be helpful to others. Thanks!
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Hi Tayna, I heard back from the doctor who was monitoring results for LDA and Tourette's or tics. The answer was not very definitive. He said it helps some, and that people just have to try it to find out. So, I know that is not much help to you. Maybe someone who has used it will add to this.
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Good luck with finding what you need, argentanya.
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Hi argentanya, From what we understand the amount of msg in capsules is quite small. But that doesn't mean it could not cause a reaction. Do you always see the increase shortly after she takes them?
What nutrients is she taking?
You might want to experiment with finding supplements with vegetarian capsules. They are quite common now. Even some gel caps are now in a vegetarian capsule though they are not as easy to find.
When supplements are in a powdered form, they can often be opened and put into vegetarian capsules like these on Amazon.
Please let us know if any of this makes sense. We could help you find non-gelatin nutrients if you wish! How has your daughter been doing?
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Hi tayna2001 -- I know this is a late response. Several years ago it was suggested by a doctor who had been monitoring results from LDA, which is short for low dose enzyme activated immunotherapy, that it was not as successful for Tourette's as for some other conditions.
However, there is such a range of reasons that people have tics (as well as Tourette's) that I can't give an answer for this.
Let me get in touch with a doctor who is very familiar with LDA and see what his answer on this is. I hope to get back to you soon.
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Hi mkwgbennett and welcome to the forums. I was waiting to see if any members had this experience with Zoloft before responding. But it did not surprise me when I saw your note. Zoloft is a drug that has helped many people but can also cause a range of unwanted neurological responses (among other types of potential side effects). It can also require care when weaning off of it.
Take a look at this list of side effects linked below. It includes convulsions and "muscle spasm or jerking of all extremities." The incidence of convulsions is considered uncommon and the incidence of the jerking and spasms unknown. But it can happen. The huge list of negative side-effects is pretty sobering.
https://www.drugs.com/sfx/zoloft-side-effects.html
Your child may be among those who have an adverse reaction to Zoloft. What is happening right now? Did the doctor get back in touch and change the approach? We would like to help in any way we can. Hang in there--you should be able to address this.
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Posting in case this hasn't been shared before:
The Ruggiero-Klinghardt (RK) Protocol for the Diagnosis and Treatment of Chronic Conditions with Particular Focus on Lyme Disease
Full online publication here.
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Key Takeaways:
What can we do to step up our EMF mitigation efforts?
What works better for parasites; natural options or pharmaceutical ones?
How can we detoxify aluminum and glyphosate?
What role do viruses play in chronic illness?
What is Dr. Klinghardt's approach to treating Lyme?
What are SIBO and MCAS and how to approach treatment?
What probiotic may help with SIBO?
How do we get more energy and a better functioning brain?
Is copper toxicity a common concern?
What diet is best for people with Lyme?
Is alkaline water a useful tool?
What type of bee venom is best? -
I'm glad there has been some relief at least. That's progress. Seems like it could be a good idea to see an ENT to let them rule out anything special going on. It would seem he/she could also make sure all the dirt is out and nothing else is aggravating things.
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Martin -- I'm so behind on these threads, I apologize! I'm trying to wind up a book on tic triggers and it has me very tied up. I keep thinking I am done and then something else comes up to delay it.
I would not try to do an entire fast.The point of mentioning that was mostly because it was of clinical interest--it proved that diet made a difference.
Dairy and wheat would be a good place to start. But also keep a log everyday. Someone wrote how corn was the worst thing for them. . . it is hard to know what the biggest issues are. But wheat and dairy are two of the most common, in general. I think the elimination diet, as you mentioned, makes the most sense as an approach.
It's great you are making changes in the home! As for essential oils, usually those are OK, though I wouldn't go overboard with them -- and some find they need to be diluted. Reports of a contact allergy (skin rash) are definitely reported, and if they can bother the skin they also have the potential to cause problems when inhaled.
This is an interesting article that warns against their use for asthma patients http://www.aaaai.org/ask-the-expert/oil-diffusers-asthma
In any event, you might ask yourself why you need to use the essential oils and if you are set on using them, think about using a minimal amount. But to answer your question, yes we are mostly talking about chemically scented products as far as tic reactions. It would be interesting to have a study on essential oils and tics. If you learn anything, please let us know!
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Hi Ssonheim, I'm wondering how things are now--did they settle down as the cold hopefully went away? Or have the tics remained the same?
Does the doctor think the nose/nasal yeast infection could be related to the steroid spray?
Can you get her checked for a systemic candida infection? Maybe an antifungal medication will be called for -- a doctor could tell you.
What is her diet like--that of a typical kid, or is she on a restricted diet of any type?
For sure you can have hope that it will go away! Your instinct that it is not normal is correct. Just because it is common for doctors to see kids with tics doesn't mean you want to ignore them.
If you look at it from the standpoint of allergy, as one doctor suggested, then it makes sense to make adjustments at home to avoid all allergens and also to watch her diet. Some nutrients could also help. Have you ever had time to do an overall allergy approach at home? I think you have good clues to what is going on and can zero in on efforts that will help.
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Hi Moose_man22 -- I was waiting to see if anyone responded to this. I know some people have tried it and found it helpful.
NORML is one of the best sites for marijuana information. This link talks about its uses for TS
http://norml.org/library/item/tourettes-syndrome
Of course the researchers only suggest it for "treatment resistant" TS, even though it tends to be safer than the conventional drugs used for TS and some would recommend that it should be a first line therapy, not after everything else fails. (Not that marijuana or CBD oil is without some potential side effects.)
Here is an article about pediatric epilepsy and CBD oil (again they say treatment resistant.)
http://blog.norml.org/2016/01/27/study-cbd-oil-highly-promising-in-pediatric-epilepsy-treatment/
I hope this is some help!
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Hi NYDad, I hope the appointment is useful. With an environmental physician, they are often allergists and will probably lead you in the direction of what should be tested. (However, I don't know if this person is an allergist or not.)
That said, many doctors now prefer ImmunoCAP testing or the ELISA test to RAST testing, even though they can result in false positives. Your doctor may have a particular preference.
Some environmental physicians will rely on skin testing (different from the typical skin prick test) and that can often be very helpful.
Approaches by functional medicine doctors usually include a number of lab tests, the specifics of which they will determine based on the clinical history you share with them. I wouldn't think you need to jump to heavy metal testing right away -- unless the doctor sees a reason for this. A nutritional analysis would be fairly common. Again, I'd let the doctor lead the way after you describe the hypersensitivities you have noted..
I hope you will let us know how things go and what you learn. Wishing you all the best with it!
Hi, I have a question
in Tourette Syndrome and Tics
Posted
Hi -- that is an interesting question. I couldn't find any research on the subject, although there is a single case report of someone who had Tourette's and also had thyroid related issue.
So you are saying that your son has TS and you are on thyroid supplements?