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deby

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Posts posted by deby

  1. Tics and restless leg syndrome?

    in Tourette Syndrome and Tics

    Posted

    I think it's always like that when they try to rest, the tics are the worst. Been tired is also a trigger for tics.

    It is hard to see them suffering, I'm going through the same thing.

    The challenge is to find what are the triggers for your son.

    Start keeping a log, write what he ate, what he did, if he was mostly indoors/outdoors, screen time, stress etc.

    And keep reading.

    For my son we discovered that chlorine (pools) was a big trigger as well as dopamine increased foods like bananas and corn.

    Hopefully it helps, good luck!

  6. strep undiscover

    in PANS / PANDAS (Lyme included)

    Posted

    My son was sick last year and he had extremely high titers.He had various tics (motor and vocals). We treated him with abs as well as changing his diet (no artificial,no MSG, + fish oil, + probiotic , +Epsom salts).

    After a couple of months and also the discovery that some food was causing his vocal tics, we eliminate that food, and slowly he began to heal.

    From all the things we did, I'm not sure what really helped.

     

    Two months ago, he started having some minor tics, and then he started having this cough, that it turned out that it is a tic too.

    Last week we did again the blood tests, and again his DNASE is ~800.

    So, probably, he had a strep 2 months ago , that was unnoticeable. He didn't show any sign of sickness.

     

    So I'm back :( , to the long road, trying to discover what will make him feel better.

    Can anyone remind me, which abs it is recommended to start?

    My pediatrician is willing to help but he doesn't know anything about Pandas.

    thanks!

  10. My DS8 following up

    in Tourette Syndrome and Tics

    Posted

    Hi to everybody,

    I don't want to open my mouth, but my son is doing really good, with barely any noticeable motor tics and no vocal tics.

    We did many things to try to improve his condition so I really don't know, if it is a combination of those things or one in particular.

    It started around April (allergy season) mys on is allergic to all pollen trees. Together with stress from state test.

    He was having terrible motor tics (jaw open,twisting neck) every 3 seconds, all day. He also had vocal tics (screams).

    Things that we did in time order:

    -No msg,food coloring, move to organic diet.

    -No tuna (he was eating tuna almost every day, yes, very bad mistake)

    At this point not much improvement, we test titers, it came very high.

    He took Augmentin (2 weeks), then Zytromach (4 weeks), then Omnisef (2 weeks and 6 weeks preventive half dose)

    -Probiotic (high dose)

    -omega 3, vitamin B6, some magnesium (as epson salts).

     

    But to make this story short, things were better but never saw a real improvement, till we discovered what was causing the screaming tics, and it was "bananas".

    I couldn't believe it, since very few people are sensitive to bananas.

    He loved bananas, he was eating a least once a day and in tests times ,twice a day.

    He stopped eating bananas for more than 2 months, no more vocal tics, and the motor tics gradually reduced too.

    Today he barely has any motor tic, from time to time I see one or two, but I'm the only one who is able to see those.

    I hope that this is the end of this nightmare for us, and I wish the very best for all of you, this forum is unbelievable.

    I know that this forum saved our lives, it gave me hope, and I learned everything to help my son from here.

    Don't give up, sooner or later you'll discover what is causing your child problems.

    My recommendation, try to take out from their diet the thing that they eat like the most. I read a lot about developing food allergies/sensitivities from the food that we carved the most.

    Good luck to all of you and thank you for everything!

  14. Certain foods make vocal tics worse

    in Tourette Syndrome and Tics

    Posted

    Faith,

    I am sorry but I'm trying to figure it out also, I read that some people with pollen allergy can develop OAS (oral allergy syndrome) to specific foods.

    We are trying to find the triggers for my DS8 tics, and looks like the foods that he was craving the most (bananas and cucumbers in his case) became a food allergy for him.

    Right now we are avoiding those foods as well as all the artificial foods and colors and his vocals appear to be better.

  15. Elimindation Diets Do they work?

    in Attention Deficit Disorders

    Posted

    I started my 7 1/2 year old son on an elimination diet (mostly dairy and gluten and sweets). I would love to hear from those of you who have tried it on their child with ADHD, Anxiety and/or TICS and how it worked in terms of changing challenging behaviors??? When did you start to see a change? Andrea

     

    I am going through the same phase as you.I've tried the elimination diet, with no much success.

    There is something very interesting, my son used to eat lots of bananas and cucumbers (those were his favorite fruit/vegetable), we run out of those and I didn't buy those for a week, the interesting thing is that his vocal tics went away.

    Then I bought some and the tics came back. We tried it again (eliminating those two for a week and bringing them back) same result.

    Then I read that there are a lot of people who develop food allergy, specially for the food they eat the most.

    So my recommendation for you, start thye elimination with the food that he eats every day.

    Also take out all the artificial food since there are lots of researches that those increase ADHD and tics.

  16. Bontech vitamins

    in Tourette Syndrome and Tics

    Posted

    Hi deby

     

    just wanted to let you know that this thread is from 2005 and Giselle hasnt been here for quite a while...hopefully because her son is still doing so well :)

    I've noticed this post is old, but didn't followed Giselle's posts to check if she's still in the forum.

    I was searching people who wrote that bananas was affecting their kids vocal tics, since I'm suspecting that for my DS8.

    What I still couldn't find what is triggering the motor tics, could it be completely different things? or it might be related to other food sensitivity in the same banana family?

  17. Certain foods make vocal tics worse

    in Tourette Syndrome and Tics

    Posted

    There are some foods that I eat and high amounts and give me really bad vocal tics like olive oil and bannas. WHy would they only give me a rise in vocal tics but not motor? Could this be telling me something?

     

    Did you find the answer to your question? I'm starting to suspect the same thing for my son.

    Looks like his vocal tics also get triggered by bananas.

    He is also allergic to trees pollen and mold.

  18. Bontech vitamins

    in Tourette Syndrome and Tics

    Posted

    Hi Patty,

    Bonnie's Vitamins are wonderful for a lot of people and I applaud her for her pioneering vitamin therapy for TS. My son, unfortunately, didn't do well on her vitamins (or several others we tried). I am now armed with why, which I didn't know when we started them. My son has high histamine - we had his neurotransmitters tested and found out lots of stuff which we are addressing with great success but having high histamine means that folate (folic acid) is a no no - it just makes things worse. Almost all multivitamins, including Bonnie's, have folate. That was a great piece of information when we found this out - it explained so much. Another no no for histamine is choline. The fish oils didn't agree with my son either (possibly due to choline) but could be a lot of reasons. We have him on flax seed and borage which works wonders and gets him his omegas.

     

    Another thing we found out was that for whatever reason he doesn't break B6 down very well (it might be the reason he's so out of whack in the first place) and he takes P5P which is one step closer to being broken down. He's thriving on that.

     

    We essentially follow Bonnie's lead in that vitamins are integral to his health and diminishing tics but we've had to give him separate vitamins so that we aren't giving him the things that make him worse. He ends up having to take a lot of them but they are more individulized because of his own physiology. Perhaps that's why some do well, and some don't.

     

    Getting a great DAN doctor, Environmental doc or integrative doc who do these kinds of tests will really help you cut to the chase and eliminates the trial and error (and wasting of time and money) that is involved without one. I don't know if I read it here or at Brain Talk but one person said "they tried diet and vitamins and they didn't work" and I can see why. Each of these guys has different issues and there isn't a one fix all. For example I was desperately trying to find out what types of foods might be triggers for my son. I suspected gluten, casein and soy. I was eliminating all those but he wasn't getting any better, maybe even a little worse. When I finally had a delayed food allergy blood test done I had a huge "Aha" moment (well, I actually cried tears of joy) because there, right before me was why. He was allergic to corn! :) When I had taken gluten out of his diet I replaced it with corn! No bread? Corn chips and corn tortillas. No wheat cereal? O.K., then corn flakes! No crackers - pop corn! Poor kid! No wonder he was still doing horribly! When we took the corn away (and bananas, he was allergic to those too, which included arrowroot flour, part of the banana family) it was amazing. Over half his tics totally went away!

     

    It just pays to have some of these tests done - and all of them were paid by insurance because our doctor didn't put it down as Tourettes -which in fact was true. They were allergy and chronic loose stools - all the allergens were ripping his poor gut up. It just so happens that it helped his tics as well. I see his tics as a symptom. Like a runny nose - get rid of the cold and the runny nose goes away.

     

    Good luck, read lots, ask lots of questions, trust your intuition, never give up and WELCOME!

     

    Giselle

    P.S. My son is almost tic free now - he only does a few finger crunches now and again if he's super stressed out. He used to tic about 40 times every minute, mostly phonic but many times with painful neck, jaw and back tics. He also has OCD - also gone.

     

    Hi Giselle,

    I am starting to suspect that my son is allergic to bananas, (he is already allergic to pollen and there is a connection between food allergy like bananas an pollen).

    I am going to a new allergist this weekend and I was wondering which test did your DAN doctor did to your son.

    thanks!

  20. Omnicef

    in PANS / PANDAS (Lyme included)

    Posted

    dd13 is on 300mg of Omnicef twice a day. Does anyone know if it has to be taken with food?

     

    Thanks!

     

    My son started yesterday with Omnisef too, in the bottle it says that he can take it with or without food. Also shouldn't be refrigerated.

    But I don't have experience if it is better for their stomach one way or the other.

  23. looking for best Dr. to treat a toddler

    in PANS / PANDAS (Lyme included)

    Posted

    Where are you exactly? I have just met Dr. Thomas Lin in Irvine (irvinekidsmd.com). He is a DAN doc, and has seen lots of PANDAS cases. We are on azithromycin and awaiting next step. I like him and think he is very educated in the PANDAS stuff. He has a child with autism, so I think he treats from the heart, which is also good, as you already know. Glad you have the confidence to say goodbye to all those unwilling to help you! Best wishes...

     

    Do you know if Dr Lin can do steroid burst/IVIG? do you know if he helps with insurance?

    Is he responsive? Does he answers phone calls?

    We had a bad experience with one Dr. that took a lot of money for the consultation, and after couple of weeks, stopped answering phone calls/emails.

  24. Doctor

    in PANS / PANDAS (Lyme included)

    Posted

    Has anyone had any personal experiences with Dr. Nancy Mullan in Burbabk California? I looked for information on this forum but could not find anything. I would appreciate any feed back.

    Hi Tapiash,

    I am also interested to know about Dr Mullan, did you got any information? did you have a chance to meet her?

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