Sheila
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Posts posted by Sheila
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smcdow6, I wish I had seen your post. I am working on a new ebook for Tourette's and have been neglecting the forums!
Your recent experiences with your son are so concerning. Did the doctors have any additional insights into the whole body tic?
What efforts did the naturopath come up with--did you get any testing done? Please let us know how your son is doing. I am going to send an email to you later today. Sheila
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Hi Dreamsooz, Welcome to the Forums and I'm so sorry to have missed this post from you!
I can answer your question based on feedback we have received from parents.
In general it should improve your tics, and if started at a low dose it may not cause a big increase in tics. It does seem that you are moving in the right direction with this effort given your history. Did you start your treatment?
Can you tell us how you are doing? Are you adjusting your diet along the lines of an anti-candida approach also? I hope things are improving for you. A systemic yeast infection can cause so many issues. You should feel much better after addressing it.
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Hello, Bigal -- thank you for posting this, and it's wonderful that you found help with a dental appliance. I have sent you a PM and hope you could please look for it.
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Hi PhillyKid, Is there any update on how things are going? The list of foods you gave, as far as night shades and histamine containing items aggravating tics, is very interesting.
Since you mention bipolar, I wanted to let you know about this company that has had some success in treating it through their products http://www.truehope.com/ It might be useful to try. There has been some limited research with positive results.
Let me know what you think -- and we would love to know how you are making out.
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Hi Kathy04 and welcome to the forums. You've made some major positive changes for your daughter--congratulations.
I can see why you are concerned though, with symptoms being stronger after starting the dietary changes. I agree with you that it would seem removing foods would not increase tics. I wouldn't worry that there are deficiencies so quickly. Do you feel like you are using a lot more of a particular food to replace some of the ones you are avoiding? If so, what would those be?
Am wondering if there could there be something totally different going on in the past week.
Where do you live? And did she just start school?
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Hi PhillyKid, it looks like you are making a lot of helpful and practical changes.
At what age did your tics start? Do you have allergies?
Tourette syndrome can be treated for many people. Sometimes it takes the help of a professional to sort things out and provide treatment. There is not a single approach that helps everyone. Please tell us more about yourself, if you like.
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Hi MHidalgo, We're glad you posted on the forum about this and will look forward to more feedback from you.
Here are some articles on tics and melatonin on the forum that might interest you. Please see what you think is helpful--and maybe you can let us all know!
(I notice the product also has a small amount of zinc gluconate which could also be playing a role.)
As you say, it is only one day of observation so far. We really would be interested in hearing more from you on this.
Melatonin and dopamine 5 posts 5 authors
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Please get back to us and let us know how things go. We know they are mailing these out at their own expense in an effort to learn more about which people respond best. If no feedback is given to them (or us, and we pass it on), they of course don't learn anything! Good luck!
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Hi everyone,
This info was provided by the parent behind this:
Four years ago I co-founded a small medical device company called Mater Technologies. The first product we developed, REPREEVE, was designed to treat an eye disorder called nystagmus. Nystagmus causes uncontrolled eye movement, making many aspects of life difficult. REPREEVE is a chemical-free, non-invasive approach that we have found provides relief for some people with nystagmus. In short, REPREEVE is a set of six, small Band-Aid like patches that are worn continuously in six different locations on the body. Each patch contains a little bead of inactive substance that puts pressure on the skin. In doing this approach, it was learned that some with tics were also helped. You can request a free sample with the idea of providing feedback, as they want to find out who it can best help.
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Hello -- I will try to make contact and let you know. I was in touch last week and nothing had changed. Maybe they are out of town. I'll let you know what I find out.
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Hi -- I'm wondering how your son is doing with his tics? Has anything improved?
Also you may be interested to know, since he was not born with color blindness, that some medications have been linked to this condition. I thought it would be interesting for you to see that blood pressure medications are included in the list, along with chemical exposures.
The American Optometric Association wrote (and note that they use the term color deficiency, which they say is the same as the term color blindness):
What causes color vision deficiency?Usually, color deficiency is an inherited condition caused by a common X-linked recessive gene, which is passed from a mother to her son. But disease or injury that damages the optic nerve or retina can also cause loss of color recognition. Some diseases that can cause color deficits are:
- diabetes
- glaucoma
- macular degeneration
- Alzheimer's disease
- Parkinson's disease
- multiple sclerosis
- chronic alcoholism
- leukemia
- sickle cell anemia
Other causes for color vision deficiency include:
- Medications. Drugs used to treat heart problems, high blood pressure, infections, nervous disorders and psychological problems can affect color vision.
- Aging. The ability to see colors can gradually lessen with age.
- Chemical Exposure. Contact with certain chemicals, such as fertilizers and styrene, have been known to cause loss of color vision.
Please let us know how things are going. Sheila
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Hi -- families and physicians have reported a connection between tics and a systemic yeast/fungal infection like Candida Albicans.
Treatment typically would not include widespread use of an antifungal topical lotion. These lotions are usually used in a specific area of an outer fungal infection.
It might be best to consult a naturopath or integrative practitioner if you think a fungal infection is involved with the tics. Several approaches can be used to strengthen the immune system and to treat and prevent systemic fungal infections.
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Hello GloryMom, I have been following responses to your thread in the PANDAS/PANS forum and believe that is where you'll find the most help given the nature of your daughter's condition.
With that in mind, I'm going to close this Tourette's thread and encourage everyone to post in the PANS forum so responses are not split up.
Please know we all join in wishing you and your family the very best.
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Hi mscdow6-- Welcome to the Forums; we are so sorry to read about the health challenges your boy is having and we know how stressful that is for you.
It's good you will see an eye specialist related to the vision color issues. A neuro-ophthalmologist might also be considered.
I agree the color change is unusual and to my knowledge we have not had similar Forum reports.
Chemical exposures have been known to affect vision and color perception. I'm not saying this is the case, because of course we have no way of knowing. But we also know toxins can often be related to tic disorders. Mold exposure is also a possibility to be considered.
Given your child's history of tics for over a year as well as the latest developments, it is advisable to strictly avoid toxic chemicals exposures in the home and in food (eat organic). No scented products, use natural cleaning products, no typical air fresheners, etc.
Have there been any exposures outside--such as to pesticides and herbicides, weed killer on lawns or fields? Also, personal products should be unscented and natural. Has he been wearing bug repellent? Any pets in the home being treated for fleas? Any known mold in the home?
Has your boy been swimming in treated pools?
I'm wondering if you have you had a chance to look into efforts we often recommend on our website to reduce tics in general.
You didn't mention your child's age or where you live. Do you want to tell us any more about his situation?
I sure hope the last day has gone better. Please let us know. Sheila
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Joy, I'm going to send you a private message. Please let me know if you do not receive it. Sheila
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Hi -- I just want to mention that when ads appear on our site, they are not posted by us nor do we endorse them.
Did you finally connect with Native Remedies and hear back? It's a good idea to have a professional help guide you in your efforts. Sometimes parents manage to do amazing jobs at tracking down causes and fine-tuning approaches themselves, and at other times a naturopath or physician is needed to help guide the process which can sometimes be more complicated than some forum reports may indicate.
Please let us know how things are going.
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Rick, just checking in to see how things are going. I hope some answers have emerged.
Yes, complex tics can be transient. The labels are a bit arbitrary.
The national Tourette association wrote in a published guide "The difference between Tourette syndrome and other tic syndromes may be no more than semantic especially since recent genetic evidence links Tourette syndrome with multiple and transient tics of childhood and can only be defined in retrospect." The labels don't really tell you much. But of course we wish your child's tics to go away quickly.
The main thing is to focus on the current symptoms and try to find causes for them, along with ways to calm your boy's nervous system. Have you learned more or had different experiences since writing?
Do you need help finding an integrative physician in the UK?
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Hi ijenk, I guess the answer to this is not enough! Also the focus has traditionally been on genetics and drug therapies, with some more recent attention to cognitive behavioral therapies. An international effort is now underway to look collaboratively at genetics since decades of research have not yielded definitive answers.
Research related to diet, toxins, the immune system and allergy -- as well as other environmental factors -- all areas that parents and some doctors have flagged as key players in different people's Tourette symptoms have received little funding or interest.
Clearly much more needs to be done!
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Hi karol_dr, Did you get a chance to try the Food Detective blood test and get any results? We haven't had much feedback on it on our forums, though of course many people play "food detective" on their own.
Since you were determined to be low in minerals, as you know, there are a number of types of magnesium supplements. One to consider, which it appears could be ordered from Poland, is a liquid by Carolyn Dean--ReMeg, along with ReMyte for a mineral complex. Can't make any promises, but you might find it useful. See on right side of page for link http://drcarolyndean.com/natural-health-resource/ They are more expensive than some more common types.
Did you give the no-gluten effort a try? Please let us know how you are doing.
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Hi Tiger, for practitioners in the UK, I hope this list could help--please scroll down in this thread:
http://latitudes.org/forums/index.php?showtopic=24266
Let us know if you find any help with this list, OK? Hoping so!
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Hi --Sorry things are so rough right now. I had replied on a different thread before, and you mentioned that you were going to start making some dietary changes, eliminating artificial additives and reducing sugars.
How has that gone? Do you see any difference--though this could be just a small part of what is going on?
I'm glad you have the book Natural Treatments for Tics and Tourette's and you could start making sure your home is free of typical toxic chemicals found in cleaning products, scented detergents, etc. If you read the parent letters in the book you can get an idea of things to try. I know it is hard to look into things on your own while so emotionally involved with your son's problems, but see if you can do a bit each day.
In general, there are doctors who accept the fact that environmental triggers including infections and foods have the potential to cause inflammation in the brain, resulting in tics and other behavioral issues, and other doctors who don't.
Could you travel to Hurst, TX?
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Hi Joy, sorry for the delay in getting back to you. And welcome to the forums, we are glad you got in touch.
It sounds like your boy has been in a rough situation if Haldol was prescribed, and I know it's been hard for you too. I'm sorry he has been getting worse, and I understand your concern that he will be entering 5th grade.
There are many things that need to be addressed if you want to try to heal your son. The fact that his stomach is often upset is an important symptom that needs to be explored. You also say he has allergies, plus you have noticed that red dye causes ticcing. These are all clues to his condition and there are no doubt other important symptoms also that have not yet been looked at.
I believe you need to see a physician to help you sort things out, and yes there are doctors in Texas. I don't know where you live...please let us know and I will try to find doctors who may be able to help.
You boy's case is too serious for you to try to tweak things on your own--you will need professional help given his medication history. However, there are things you could start doing now to help him. I also recommend that you read my response to ijenk and see how many of those items you can address. .
I'll be watching for a response from you as far as location. I may not get back to you for a few days, but I will!
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Hi Betzim, It's good to read your note that your child responded well to Clonidine with only fatigue as an apparent side effect. It sounds like it really helped him.
As a rule we don't discourage medication use, though we don't focus on it on this Forum since there are so many other websites that do, and most parents hear conventional options from their physician.
One of the problems we have seen with TS medications is that unless a child has had a thorough medical evaluation that rules out chemical sensitivities or metabolic imbalances/immune issues, the child may be more likely to have negative responses to a drug that others may tolerate better.
Some of our readers have had significant negative reactions to TS drugs including Clonidine (potential side effects here. And here). Hypersensitive kids, as many TS kids are, may fall into the uncommon or rare reaction category more often that others.
Also, Clonidine has not been well tested for use in children, and this little boy is only 5 years old. So there is an incentive for the parent to try to find out what the underlying issues are in the event that they can be corrected.
That said, I'm genuinely happy for you that your child is doing so well. There is always a place for medications.
Seasonal tics
in Tourette Syndrome and Tics
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HI NYDAD2014 and crazy.
It sounds like you both have a good approach in trying to find the reasons for your boys' tics. A number of things can be involved with flares, including a reaction to seasonal allergies. But there are other possibilities as well.
If there is a mold issue as crazy indicated, it is important to avoid exposure as much as possible and use a quality air purifier in the home and bedroom.Make sure the home and school are free of mold.
An increase in tics can be caused by many triggers. It's good to experiment with diet and basic nutrients as you are doing. But please also be sure that there are no toxic products being used in the home, or in homes the kids visit. That includes things like plug-ins, Fabreeze, chlorine products, scented laundry products, etc. Personal products (like aftershave) for the 16 year old should also be natural. Cars should not have scented items as are often used.
Keep a log each day, starting with how the boys are when they wake up, how they are after a shower, after breakfast, after school, after playing sports, etc.
If tics are not better in the morning than when they went to bed, there could be something in the bedroom that is aggravating tics.
Make sure no artificial flavors or colors are being consumed. Preservatives also bother many.
Have you considered the items listed in this article http://latitudes.org/finding-triggers-for-tics-a-must-read/ ?
Some kids have a candida yeast overgrowth that affects the gut and in return, the brain, and need to be treated for that. Sugary foods feed this. If it is an underlying problem, addressing it can make a big different. It often occurs along with a mold allergy.
I would consider seeing an environmental physician or other integrative doctor to get some help in sorting things out.
Thanks for posting and we hope you will stay in touch as you find answers.