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Sheila

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Posts posted by Sheila

  1. Hi James_S, It is always so reassuring to read accounts of successful efforts like your family's. I'm so happy for you!

     

    Those of us who have "been there" know the heartache in watching a child have tics -- and feeling helpless. So we can relate to how nice it must be to see your son calm. Ah-h-h.

     

    It is good to know that you were able to find an integrative practitioner who pointed you in the right direction, though you didn't follow through on everything recommended right now. And you may never need to. You used a good approach, to start with your own plan, knowing you could adjust efforts if needed.

     

    Your cautious optimism is smart, because as you say, upcoming allergy season and possible mold exposures can have an effect. But now you know what to watch for.

     

    I'm sure your suggestions will be read by others, and we really appreciate you taking the time to write.

     

    I will find a way to share this with others--thank you for the green light on that. And I hope that you will continue to keep us informed of your findings and progress.

     

    Thanks also for responding to another thread on this forum. Often people get help and then don't come back. That's understandable, of course, but it is great when members can return to offer support to others.

     

    Your son is so lucky to have parents who are wiling to go beyond the status quo to get him the help he needs.

  2. Hi jcmom and welcome to the forums!

     

    About the magnesium, there is a theory that there could be a magnesium deficiency in tic disorders, though there is not research on it and there are a number of different reasons that kids can have tics. One study was planned but results not published that intended to look at supplementing with magnesium and B6 for Tourette syndrome. The entire discussion of the proposed study is here with the rationale behind it.

     

    With food allergies, it is best to try to avoid the items even when they are mild--or at least rotate them, say every 4 days. But for significant allergies you are on the right track, to get them out of the diet. It is good you had him tested. Your allergist should be able to tell you if you can reintroduce wheat occasionally after an extended time off of it.

     

    Comments on the gut by others are good. He could probably benefit from a quality probiotic which can help with digestion and potentially improve reactions to foods. And you should reduce sugars as much as you can.

     

    Have you had a chance to consider chemicals in the environment in addition to classic allergens? Let us know if you need ideas for that. And hope you will keep us posted.

     

     

  3. I would agree with others that it makes sense to see if anything related to your cleaning company has changed dramatically, if indeed you come into contact with cleaning products or homes yourself (not just your employees)m.

     

    Any chance of a major toxic exposure to old, new renovations, heavy pesticide use? The cleaning products themselves are also suspect but again, it would probably require a dramatic switch.

     

    Do you live in a location where someone else handles pesticide treatment?

     

    it could also be a combination of exposures and infection that set things off. The blood testing recommended is an excellent place to start as well.

     

    I'll send you a message and see if you are still getting on the forum to let us know how you are doing and what you have learned.

  4. Hi Kathrynmc1974 and welcome to the forums! I was waiting to see if anyone in the UK jumped in on this. We have a few active people there.

     

    Meanwhile, you said you have my book, so I wanted to offer to do my best to answer any questions that might come up as you begin reading it. I hope you can find some answers for your daughter.

     

    It's always so interesting when medical professionals predict how long tics are going to last, as you mention. No advice but just to wait it out. Maybe they get lucky often enough to keep believing that is good advice!

     

    Looking forward to hearing back! Sheila

  5. Hi -- you mentioned in a separate post (here) that there was a very significant candida problem based on testing. Are you able to get a prescription for an antifungal to treat this? (Like nystatin or diflucan in the US). I know you mentioned an herbal preparation. Has your son been taking tha and do you have any way to know if it is helping? It's important to attack the candida seriously.

     

    Am also wondering if you have dust prevention in the bedroom beyond the filter you mentioned elsewhere? Does he have dust covers on his bed and pillow, and is bedding washed frequently in hot water? (In unscented detergent).

  6. Hi Sonias, I'm glad you wrote and apologize that I didn't see your note come in. I'm sorry your son has tics again. One thing I mentioned before--and of course this is just a guess since it is not possible to diagnose from a distance (and on top of that I'm not a physician) is that a yeast infection can cause an itchy bottom, as can parasites.

     

    We hear from a number of people that a candida yeast overgrowth has aggravated tics. We are usually familiar that women can get a yeast infection, but males can also and it can affect the gut.

     

    There are medications for yeast (fungal) infections. In the US, typical ones are Nystatin and Diflucan in case it would help to try that. A doctor needs to prescribe. There are also natural things that people take for yeast infections.

     

    What is his diet like? He should cut out ALL sugars. Also he should take probiotics. Can you get that type of supplement where you live?

     

    Again, I don't know if that is his problem but it is very common and would be worth looking into.

     

    Let me know if this made sense! Sheila

     

  7. Jsara, One of the worst things doctors dealing with tics can do is to tell a child that they have TS and there is no cure. Talk about being insensitive! Aside from being discouraging, especially when kids can go online and read worst case scenarios that scare parents, much less kids, it is simply not true.

     

    Please tell your son that many kids have had tics just like his and gotten better by finding what makes their tics worse. Our neurologist told my son that exact same thing and it made me mad as well. I told my child (about the same age) to forget everything the doctor said! We proceeded to find help, real help, and he was soon fine.

     

    Yes-- you should pursue whether any type of seizure is happening related to the blank stares you have seen. Good you have an appt with a neurologist.

     

    Aside from that -- I'm glad to know you have started to keep a log. Some people have found that when tics follow the pattern you mention, worse in fall and spring, that there is an allergy connection, with hypersensitivities worse during these times. Sometimes it is inhalants like pollens that are the worst offenders, sometimes it is mold. Of course stress could play a role, as you suggest. When physically stressed (with allergies) or emotionally, then more things at lower levels can trigger tics than typically.

     

    Does he have a family history of allergies?

     

    Re: his sleeping problems, be sure the bedroom is as non-allergenic as possible, a clean and natural place. And turn off electronics. (Whether this has anything to do with his evening tics or not, it is helpful for everyone.)

     

    Have you had a chance to read our book or articles on our website by families and what helped them ?

     

    Here's an article by a mother with a young son http://latitudes.org/dealing-with-tourettes-or-tics-i-wrote-this-just-for-you/ Sheila

  8. Jsara, One of the worst things doctors dealing with tics can do is to tell a child that they have TS and there is no cure. Talk about being insensitive! Aside from being discouraging, especially when kids can go online and read worst case scenarios that scare parents, much less kids, it is simply not true.

     

    Please tell your son that many kids have had tics just like his and gotten better by finding what makes their tics worse. Our neurologist told my son that exact same thing and it made me mad as well. I told my child (about the same age) to forget everything the doctor said! We proceeded to find help, real help, and he was soon fine.

     

    Yes-- you should pursue whether any type of seizure is happening related to the blank stares you have seen. Good you have an appt with a neurologist.

     

    Aside from that -- I'm glad to know you have started to keep a log. Some people have found that when tics follow the pattern you mention, worse in fall and spring, that there is an allergy connection, with hypersensitivities worse during these times. Sometimes it is inhalants like pollens that are the worst offenders, sometimes it is mold. Of course stress could play a role, as you suggest. When physically stressed (with allergies) or emotionally, then more things at lower levels can trigger tics than typically.

     

    Does he have a family history of allergies?

     

    Re: his sleeping problems, be sure the bedroom is as non-allergenic as possible, a clean and natural place. And turn off electronics. (Whether this has anything to do with his evening tics or not, it is helpful for everyone.)

     

    Have you had a chance to read our book or articles on our website by families and what helped them ?

     

    Here's an article by a mother with a young son http://latitudes.org/dealing-with-tourettes-or-tics-i-wrote-this-just-for-you/ Sheila

     

     

     

     

     

     

  9. Hi Jsara, Welcome to the forums. I know it is hard to see your boy with tics, but please don't assume he is headed for a long term struggle. It is encouraging that just a couple of months ago he was tic-free. The task will be to restore him to that state.

     

    Conventional medicine doesn't offer much in the way of trying to figure out why your child started having tics again.

     

    I would like to suggest that you read some of the Forum links on this thread below, and see if they give you any ideas. Then I hope you will please get back to us. .

     

    http://latitudes.org/forums/index.php?showtopic=2459

     

    Many families have found help with natural approaches and exploring a possible allergy link. Sometimes finding an integrative doctor or naturopath who can help you is useful. It is good to make sure there is not a underlying infection that is causing a hypersensitivity.

     

    It would be helpful if you could keep a log and write down what your son eats and drinks, and what he has done during the day, along with how the symptoms are. Usually over time a pattern can emerge that leads to some answers.

     

    Please write after you have had a chance to read a little bit and let us know what you think, OK? Or you can just write again and give us more information, as you wish. We want to help you find some solutions.

  10. Hi Charlotte123, I'm sorry to read that your young son has had tics for more than two years now.

     

    You could please read some of these threads that explain the approaches we often focus on on this site. http://latitudes.org/forums/index.php?showtopic=2459

     

    If you are interested in an environmental physician--and I don't know if you are--you can go to the American Academy of Environmental Medicine at www.aaemonline.org and search for Switzerland; there is one listing. I don't know anything about him personally, though he seems to do the types of assessment and treatment that have been helpful for some of our members. It is not a personal recommendation.

     

    You asked about the medication Tiapride. Since your son is so young, I thought you might find this description from Wikipedia of interest.

    I hope this is some help to you. Please keep in touch.

    Although it is considered a "safe" medicine, it is, like sulpiride, strictly contraindicated for patients under the age of 18 due to its effects during the process of puberty. This is likely related to its side effects on levels of the hormone prolactin, which is involved in sexual development.[7] There are also insufficient clinical data on the other side effects in adolescents.

    Tiapride has been found to cause excess prolactin levels in plasma,[6] which can cause decreased libido, infertility and increased risk of breast cancer.[8] This is because dopamine plays a primary role in regulating prolactin release by binding to D2 receptors on prolactin-secreting cells in the anterior pituitary.[9] Thus, when tiapride blocks these receptors these cells are disinhibited and release more prolactin. The side-effect reported most commonly to the U.S. Food and Drug Administration (FDA) is rhabdomyolysis, a condition characterized by muscle tissue breakdown.[10] Cardiac abnormalities such as prolongation of the QT interval and torsades de pointes have also have been observed. . .

  11. Hi moose_man22, Welcome to the Forums!

     

    This might not seem like a direct answer, but you could go through the list of triggers for asthma and see which ones might be a connection.

     

    Many of these factors can also trigger tics (based on feedback from the Tourette community) and can also aggravate hyperactivity. I suggest you read through to the end, where the document also mentions things like food additives and fragrances.

     

    http://www.cdc.gov/asthma/triggers.html

     

    If you can eliminate as many triggers as possible, then the threshold for reacting to excitement could be raised. Does the doctor already have you on a plan to reduce allergens in the home and watch for food triggers?

  12. Hi Brian, Tics are sometimes described like the feeling you might have if you have an itch. After you scratch it, there is relief. When you feel like you need to jerk your head, that sounds similar. It doesn't mean you would have a diagnosis of Tourette syndrome. But it does seem to be a tic. Does that make sense? Do you have other questions or things you want to share?

     

    We are glad you posted on the Forum and hope we can help.

  13. Hi James_S, This clinic should be able to help. Dr Berger is well known and respected in the autism community and I have no idea if there is a significant wait time. Definitely should be able to order the types of tests you are talking about.

     

    wholisticfamilycare.com

     

    I hope you will please let us know how you make out and what you learn. It''s a good idea to get guidance, as you say. I hope your son has been doing better these last few weeks?

     

    And welcome to the Forums! Sheila

  14. Hi TicsDaily, Welcome to the Forums (a bit late!). I commend all the efforts you make to get the word out on Tourette's with your YouTube channel. Your mini-documentary covers an interesting range of issues, with good descriptions by all your participants.

     

    I was amazed at how many clips you have produced. Today I watched the chocolate microwave mugcake. Ha. Hope you enjoyed it, hot and gooey!

     

    On this site we focus a lot on natural approaches as well as environmental and allergic triggers for tics. I wonder if some time you would like to do a video on the topic of tic triggers--encouraging people to watch for things that set their tics off? Let me know, OK? I'd be happy to assist in any way I could. Wishing you the best with all work. Sheila

     

  15. Hi Seth's mom, Welcome to the forums. I'm so sorry to read that you have been dealing with sneezing in your son for 6 months and have had to try a number of medications, some quite strong, without success. How exhausting and worriesome. :(

     

    First, could you please let us know if there has been any change since starting him on the antibiotic Keflex.

     

    Another parent had a child with nonstop sneezing and a bacterial infection was involved. It received media attention for PANDAS. I haven't been in touch with the mom lately and am not sure what the status is. See TV segment.

     

    I'm sure you will receive some feedback on this. In the meantime, would you like to tell us anything else about your boy?

     

    Have they tested for PANDAS/PANS or just trying the antibiotic?

     

    Have there been any other health issues -- or any other symptoms besides the sneezing? Do you see any pattern of it being a little better or worse at different times?

     

    Where do you live? I'm asking this in the event that someone has a resource to recommend.

     

    Hang in there, surely there is some help for your son and relief for your family.

  16. Hi momonmission, I was speaking with a doctor yesterday about kids with ADD/ADHD and she mentioned that many respond well to a prescription treatment for candida like Nystatin to help the gut issues--not just relying on diet and nutrients for candida. That's something you might want to consider if it hasn't been tried (?). If your son has a systemic yeast infection, which sounds very possible given his history, it can be a big help.

  17. Hi -- I'm sorry to read that your son has had such a severe reaction. I'm on the road and apologize for the delay in responding.

     

    If you have not already done so, I suggest that you see a pediatric neurologist as soon as you can and do not try to treat this yourself.

     

    I say this knowing that you have taken him to physicians in the past; I am not suggesting that you have avoided getting professional help.

    In a crisis like this, it would help if you could take the lab work and son's history to a neurologist.

     

    You could go to the emergency room if you can't get an appointment and he remains so agitated. I believe you have commented that your son is very sensitive to medications; you could request that caution be used with conventional medications.

     

    We will watch for a reply, and are hoping that you find all the help you need.

     

    (Has he been any better over the last two days?)

  18. Also, I'd just like to clarify about finding a dentist who can work with mouthpiece appliances for tics. Experience and skill no doubt play a role. I don't personally know anything about the Seattle (or California) reference one way or the other. You can always ask the nurse or doctor if there is a patient's family that is willing to talk with you to share their experience.

  19. Hi Josyjoy, I know it is so challenging to deal with bedwetting, and distressing for the youngster. You gave a good clue in your post that could be useful. You mentioned that when your boy eats sweet fruits or some other food as yet determined, he will wet the bed more often.

     

    I would assume that his pediatrician has ruled out a structural issue.

     

    Dr. Doris Rapp wrote about bedwetting being due to food allergy and mold/yeast infections. When you said sweet fruits make the situation worse, it made me think that your son might have a systemic yeast infection (like candida). These types of infections are worse with sweets or sugars. (Watch out for Halloween! :mellow:

     

    I haven't had a chance to read all your other posts, so please excuse me if this doesn't make sense in the context of your previous posts.

     

    Also, some people have tried eliminating, for example, milk with success, or corn--it all depends on the person and what they are allergic or intolerant of.

     

    Here's one of our articles on bedwetting, focused on Dr. Mensah http://latitudes.org/bedwetting-and-fungal-infections/

     

    You will see that the article discusses fungal infections. That is referring to a candida type overgrowth.

     

    There's a lot of info on the internet on how to reduce candida by yourself. However, given your son's situation you might want to see an integrative physician who could test for a fungal overgrowth and prescribe an antifungal medication, if that is warranted. (Guys can have yeast issues, not just women.)

     

    In the meantime you could also start keeping a log of everything eaten during the day so you can target what is aggravating the situation. There may be unidentified food allergies or intolerances that are playing a role.

     

    Does your son have any other symptoms? Might there be an underlying chronic infection? We hope you can find the right answer for him. Please let us know what you think of this possibility.

  20. Hi NYDAD2014-- I wrote a note to your other post but wanted to add something here.

     

    Exposure to chemicals can definitely trigger eye tics, and in particular, many parents have reported an increase in tics after swimming due to chemicals in the pool. Some kids with tics can tolerate pools, and others with tics cannot.The levels and types of chemicals can also vary and cause different reactions, and length of time in the pool also makes a difference.

     

    Some kids find wearing eye googles helps. Limiting time, washing thoroughly after swimming. Others have to avoid it. If your son was able to handle swimming previously then in addition to chemical exposures in the pool, his immune system could be extra sensitive due to the flu shot (note I say "could be").

     

    Sometimes it's a matter of overload from food reactions, other types of exposures, being anxious etc, possibly an underlying infection--and the pool chemicals tipped the scales.

     

    Does your son usually swim in enclosed pools (if that is what it was?) for the same length of time without any reactions?

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