Sunshine

Thanks Chemar! Good point about the on line subscription... that's what muddled me up. I'll add the book to my Xmas list. Do you think it's sold in bookstores in Canada, or should I have Santa order it on line?? Sunshine

Chemar, I looked up The Maker's Diet on the internet, but it was hard to get a sense of what the diet entails. I hesitate to buy yet another book without even a remote idea of whether or not it is worthwhile for us. I know that you and your family follow this diet. Can you tell me a bit about it please?? Sunshine

Hi Debbie, I couldn'thelp but notice that, although your son is sick now, he was also sick a few weeks ago. You wrote, "No meds now, ear infection few wks ago amoxicillan given ok after that." I can't help but wonder if the antibiotics contributed to a yeast issue. Yeast overgrowth seems to cause tics in many children. Did you use probiotics with the antibiotics?? Perhaps now that your son is sick again, his immune system is weak and the yeast is flourishing. It might be worth investigating, in addition to other possibilities. Sunshine

Hi Laurie, I just thought that I'd pop in and add a quick reply to your post, since I started this thread long ago. Here are my thoughts on a few of your questions: 1. "Should the entire family have the Strep blood work done?" - We had the entire family swabbed. Carriers can reinfect others, so it's important to treat all carriers. However, we did not check every one's blood levels. My PANDAS son was (or still is??) a carrier. 2. "I've been reading the boards nonstop, but cannot find any info on kiddos that have been treated for strep, gotten off the course of antibiotics and 'recovered' from the tics (until next onset of Strep), is this even possible? " - We have taken a different approach than other PANDAS families. My son was treated with TONS of different antibiotics last Jan. to June. Since then, he has been on none. His naturopathic doctor wanted to try treating him without antibiotics, so we took her advice. It was REALLY hard at the beginning, but his progress has been REMARKABLE. It has been a VERY SLOW process, but he is doing AMAZINGLY well right now. I do believe that, in some cases, kids can be treated for the strep and recover from the tics. Remember, antibiotics only fight 80% of the bacteria. It is up to one's body to fight the rest. No matter what approach you take, healing the immune system is imperative. Feel free to PM me for more details. Sunshine

Here's a beautiful story and video about parental love. It's not about TS/tics, but it will strike a chord with each of us. As parents we dedicate our lives to our children. This father exemplifies such dedication. Read the story, and then watch the video. Eighty-five times he's pushed his disabled son, Rick, 26.2 miles in marathons. Eight times he's not only pushed him 26.2 miles in a wheelchair but also towed him 2.4 miles in a dinghy while swimming and pedaled him 112 miles in a seat on the handlebars--all in the same day. ######'s also pulled him cross-country skiing, taken him on his back mountain climbing and once hauled him across the U.S. on a bike. And what has Rick done for his father? Not much--except save his life. This love story began in Winchester, Mass., 43 years ago, > >>when Rick was strangled by the umbilical cord during birth, leaving > >>him brain-damaged and unable to control his limbs. ``He'll be a > >>vegetable the rest of his life;'' ###### says doctors told him. But > >>the Hoyts weren't buying it. They noticed the way Rick's eyes > >>followed them around the room. When Rick was 11 they took him to > >>the engineering department at Tufts >>>University and asked if there > >>was anything to help the boy. Rigged up with a computer that > >>allowed him to control the cursor by touching a switch with the > >>side of his head, Rick was finally able to communicate. First > >>words? ``Go Bruins!'' And after a high school classmate was > >>paralyzed in an accident and the school organized a charity run for > >>him, Rick pecked out, ``Dad, I want to do that.'' Yeah, right. How > >>was ######, a self-described ``porker'' who never ran more than a > >>mile at a time, going to push his son five miles? Still, he tried. > >>``Then it was me who was handicapped,'' ###### says. ``I was sore for > >>two weeks.'' > >>That day changed Rick's life. ``Dad,'' he typed, ``when we > >>were running, it felt like I wasn't disabled anymore!'' And that > >>sentence changed ######'s life. He became obsessed with giving Rick > >>that feeling as often as he could. He got into such hard-belly > >>shape that he and Rick were ready to try the 1979 Boston Marathon. > >>``No way,'' ###### was told by a race official. The Hoyts weren't > >>quite a single runner, and they weren't quite a wheelchair > >>competitor. For a few years ###### and Rick just joined the massive > >>field and ran anyway, then they found a way to get into the race > >>officially: In 1983 they ran another marathon so fast they made the > >>qualifying time for the first time. > >> > >> Then somebody said, ``Hey, ######, why not a triathlon?'' > >>How's a guy who never learned to > swim and hadn't ridden a bike > >>since he was six going to haul his 110-pound kid through a > >>triathlon? Still, ###### tried. Now they've done 212 triathlons, > >>including four grueling 15-hour Ironmans in Hawaii. It must be a > >>buzz kill to be a 25-year-o! ld stud getting passed by an old guy > >>towing a grown man in a dinghy, don't you think? Hey, ######, why not > >>see how you'd do on your own? ``No way,'' he says. ###### does it > >>purely for ``the awesome feeling'' he gets seeing Rick with a > >>cantaloupe smile as they run, swim and ride together. This year, at > >>ages 65 and 43, ###### and Rick finished their 24th Boston Marathon, > >>in 5,083rd place out of more than 20,000 starters. Their best time? > >>Two hours, 40 minutes in 1992--only 35 minutes off the world > >>record, which, >in case you don't keep track of these things, > >>happens to be held by a guy who was not pushing another man in a > >>wheelchair at the time. > >> ``No question about it,'' Rick types. ``My dad is the Father > >>of the Century.'' And ###### got something else out of all this too. > >>Two years ago he had a mild heart attack during a race. Doctors > >>found that one of his arteries was 95% clogged. ``If you hadn't > >>been in such great shape,'' one doctor told him, ``you probably > >>would've died 15 years ago.'' > >>So, in a way, ###### and Rick saved each other's life. > >>Rick, who has his own apartment (he gets home care) and > >>works in Boston, and ######, retired from the military and living in > >>Holland, Mass. > >>That night, Rick will buy his dad dinner, but the thing he > >>really wants to give him is a gift he can never buy. ``The thing > >>I'd most like,'' Rick types, ``is that my dad sit in the chair and > >>I push him once. ''Here's the video.... http://www.youtube.com/watch?v=ryCTIigaloQ

Has anyone tried Total Calm (Gematria) as part of their supplement protocol? It is a combination of L-Taurine, GABA, and 5HTP. L-Taurine is a sulfur-containing amino acid which many people find helpful to reduce motor tics. It is an amino acid that is found in the central nervous system. GABA is a neurotransmitter that is supposed to help balance the brain's chemistry. 5 HTP seems to help some people with OCD. It is used in the production of serotonin. Just wondering if anyone has tried this product.

Giselle I am SO thankful to read your post! YEAH!!!... GREAT NEWS!! (I saw your other thread too, but will just post a big cheer for you and Hoyt here). It's people and stories like yours that keep me searching for answers for my son! Take care!

My son won't touch goats milk with a ten foot pole! However, he will eat goats milk mozzerella in a grilled cheese sandwich. Has anyone tried goats milk yoghurt?

Giselle- Nice to 'see' you. I have been thinking about you and Hoyt SO much since your 12 alarm post. How are you all doing? I'm really hoping that things have settled down. Take care!!!!

Welcome, Emily. You have found a wonderful forum for information and support. Search under ad_ccl for a good report on PANDAS. Ronnas is also very knowledgeable and she has many good threads on here. Find a good doctor/team to help your child. DAN doctors seem to be very helpul, as are some naturopaths, allergists, and pediatricians who have experience with tics. I find it helpul to glean information from this forum, and I bring it to the doctor to see if it's pertinent to my PANDAS son. I have not heard of Tenex for PANDAS. I have found that we try to alleviate stress on my son's immune system. He has made good progress in the past several months, although we are still putting his puzzle together. Good luck. Your son is lucky to have your support!

Thanks, Kim. Any thoughts/knowledge on rating the severity of tics. It seems so subjective, and I'm finding it hard to gauge my expectations for my son's progress. What constitutes mild tics? Likewise, what is severe? I'm curious to read any people's inputs on this. Thanks.

Evie My PANDAS son has an allergy to gluten, but has not has the rash which you are describing. However, my niece has has a similar sounding rash. She was diagnosed with Mollescum Contagiosum. Mollescum is a member of the pox family, and they look like small bumps/mosquito bites. It is contagious, and is transmitted by infected cells (skin to skin, or towels/washcloths...). The bumps can be burnt or frozen off, or they can be left to disappear on their own. I believe that they last for up to 2 years, and can relocate around the body. Ask your doctor, in case your son might have this. I think it's fairly common.

Stress is a definite trigger for my son. In fact, right now, his tic is a little whistle when he speaks. He is a bit of an introvert, and his whistle is more pronounced when he's talking to an adult or a small crowd of people. He is very sensitive, and I think he finds it a bit stressful to be 'in the spotlight', and so he tics more during the conversation. Although stress plays a huge role in my son's tics, I don't believe it is the root of his problem. I believe that a strep virus compromised his immune system, and allergies, yeast, and perhaps other factors are the root of his tics. We do, however, try to minimize his stress levels. Last year my husband and I blamed ourselves for his tics, as the doctors told us that is was all anxiety. We knew that we led a busy life, and could, of course, find all sorts of reasons to believe that we contributed to his stress. We now realize that we are not to blame.

Kim. Thanks, as always, for your response! I read the articles from your last post, and I even had my husband read them to aid in deciphering the details! I'm still trying to really understand the role of glutathione, glutamine, glutamate, glutamic acid... My interpretation is that the strep depletes glutathione, which is needed for successful immune/body functioning. I also believe that the other forms (glutamine/glutamate...) are not helpful, and, in fact, may be harmful (especially for ASD kids). Interestingly, my son's enzymes (kidZYME) contain L-Glutamine. I'm assuming that it may not be beneficial to him, as he is on a gluten free diet. Does that make sense?? Anyhow, I've stopped those enzymes, and will look again into the Houston products. PS I found it most interesting that my son is allergic to tomatoes and mushrooms (no other veggies), milk, and cheese. These foods are high in glutamate. Just another puzzle piece!

Hi Kim! Sorry that it has taken me so long to reply, but we have been very sick! We had a double whammie of strep (a five letter word that I have grown to detest!), and the flu. My son has lots of new tics, continuous throughout the day, although his spirits are good. He is such an amazing little boy! To answer your question, we never had an IgG test done. My son's allergist told me "You are at risk of malnourishing your growing child by litmiting his food options. There is no scientific correlation between food allergies and tics." ....... We'll never see him again! My son's naturopath will run the IgG test, but she ran the Vega test first (85% accuracy). My son tested allergic to wheat, oats, and wheat bran. She therefore suspects that he is probably gluten intolerant, and possibly celiac. We pulled out gluten to see, and it has made a big difference. We can't test him for celiac unless we add gluten back into his diet, and we are not yet prepared to do so. In Canada, however, if a person has celiac, they can claim some food expenses (difference in cost between regular bread and specialty bread, for example) on their income tax return. Therefore, it may be beneficial, at some point, to run the celiac tests. To answer your other question, my son is on two different types of enzymes. He takes UDOS complete digestive enzymes with every meal. He also takes KidZYME enzymes, a complete enzyme formula for children put out by Renew Life. I have seriously looked into Houston Nutraceuticals products, especially the No Phenol. However, I'm still uncertain if they can be sprinkled into food. My son has not yet mastered swallowing pills, so we sprinkle all of his supplements into 2-3 Tbsp of organic baby food. Thankfully, he is not insulted, but rather he sees it as a delicious way to take vitamins. He's a great kid!!

Kim, Thanks for the info.... it looks awesome! Just an interesting note for all readers: My son has one eye that turns outward. It definitely got worse after the onset of tics, and reamained (for the most part) more off center than before. We noticed a huge improvement when we pulled him off gluten and started enzymes!! It's 'off' again now, but his tics are currently worse (not certain of cause, although we have some suspicions!). The human body is such a complex mystery which most people take for granted!

Hi Kim! I noticed that you were logged on tonight, and I want to thank you for your reply (and for all the other valuable information that I've read from your posts/references!). I tried to search the forum under several different topics/key words. Unfortunately, I can't seem to uncover anyone else with related eye issues. My son was born with a genetically inherited muscular problem (very common), and had surgery at a young age. I have wondered for some time now if his many times under anaesthetic have contributed to his current health issues. Hmmm..... I'd love to read that book which you referred to, or any other articles that you come across. Many thanks, Sunshine

Hello everyone! It has been a long time since I have posted, although I read every day. Without all of your efforts at posting, I realize that the rest of us would not be learning all that we are. Thank you!!!! Mos - I was in your exact spot only 4 months ago. It is a very SLOW road to recovery, but it seems, so far, to be making a difference!! My son and I both get overloaded with frequent appointments to doctors, naturopaths, allergists etc..., so we are proceding one small step at a time. It is still overwhelming at times, but we are more optimistic than ever before. Here's what we have done: * No screens. * No artificial colours, flavours, preservatives. * Epsom salts baths... (Kim, I agree with your theory/reserach!). * Supplements, including enzymes, probiotics, cod liver oil, calcium/magnesium, multi vitamin, + vitamin C. * Allergy testing for delayed food sensitivities (started with vega test. Will do IGG in May). We pulled out dairy, gluten, soy, chocolate, and other things from his diet. * We have tried a few antibiotics, but he has only done the 5 - 10 day course. It's hard to think about putting him on them now, as his tics are minimal. What we still need to do: * Test for specific vitamin and mineral deficiencies. * Test the leves of strep titers. * Test for heavy metals. * More specific test for yeast. * Test for Pylouria. As you can see, it is a huge undertaking!! However, we have seen such a change in our son with all of the things that we have tried. It's hard to pinpoint what has been the most helpful. I do think it's a package deal, and that everything is doing a little part in healing his system. Interestingly enough, we began this journey to get rid of the tics. We continue this journey to make his immune system stronger... tics or no tics. Some of the changes that we have seen in our son have nothing to do with tics/OCD. For example, his facial colour is soooo much better. As well, he no longer has dark circles under his eyes. Also, his eyes are more aligned now (he has muscular eye problems... does anyone else have this???). He still has a long road ahead, and we may try another round of antibiotics, but we're taking it slowly. Best wishes everyone!!

We've hit the jackpot!! We met with the new naturopath today, and she is fantastic!! The naturopath will run all the tests, and has set up a wonderful supplement plan for my little boy. Once the necessary tests are done, we can make changes. It's expensive, but there's no price tag on my son's health! She even talked about a specific plan (developed in Europe) for addressing the strep naturally to avoid prophylactic use of antibiotics. Of course, she provided no details today, as we need to proceed slowly and address other issues first. I will post more on this thread as I find out. Her supplements seem to be of excellent quality, and are mostly from Europe. She has added cod liver oil to my son's supplement plan, and changed others to liquid form/increased quantity. She also added a liquid detox for his liver and kidneys. It's a slow, long road, but hopefully every little change will add up to a healthier boy. Today is a good day... we needed it! Cheers!

THANK YOU EVERYONE FOR RESPONDING!!!!!!! After reading your replies tonight, I feel much more optimistic than yesterday! My worries, and emotions seem to wax and wane, just like the tics! I can't tell you how much I appreciate your kind and helpful words! Giselle, I agree with you on the yeast issue. I read one of your old postings the other day that mentioned the 'fog', and it strikes a chord with me. I wonder if being under anaesthetic several times could contribute to a yeast problem. Definitely he has been on antibiotics (without probiotics) plenty of times in his short life. Chemar, I never thought about the duration of antibiotics. Zithromax was only a 5 day course... Hmm.... I think Clyndamiacin is a 10 day course. I do have reservations about long term use, despite the success stories. There are pros and cons to everything! Kim, your note confirmed my thoughts. I was once identifed as a carrier, yet my recent throat swab came up negative. The entire family battled the same mutated strep that seems to plague my son. I took two rounds of antibiotics to clear the strep, felt weak for the next month, tested positive again, but I refused to take a third course of antibiotics. Yet a year and a half later, I am no longer a carrier. Interesting. Ronna, I am so thankful to hear from you!! I have posted a few times hoping to connect, but I assumed that you were no longer active. I am thrilled to hear how well your son is doing!!!! I find it interesting that your son has a harder time Nov. - Feb., as my son was great last spring/summer. I wonder why? I read an old post of yours that Clyndamiacin may not affect yeast like other antibiotics. We will give it a try, but I would first like to have his yeast tested to see what we're dealing with. We have an appointment tomorrow with a new naturopath, who is open to running the necessary tests (20 minute phone interview... she sounds promising!). Thank you again for everything!

Hello everyone... I'm feeling selfish, and apologetic, as I have been reading your posts daily, yet barely have the strength to respond. Now I turn to you for help. I do feel that I can help my son, and hopefully later help someone else. I need help and support, and need non-medical opinions about my son. I have written before about my sweetheart, so here's a brief re-cap. He had a sudden onset of tic symptoms one day last March (10 days after being sick). They went away within 3 weeks. They resurfaced suddenly this August, went away, and resurfaced mildly when he started school. Tics change every few weeks, and include a vocal tic sound. Things got worse for my son this past Christmas, so I found this board, and tested him for strep. It was positive, so he did a round of Amoxycillin. He also had a remedy by a naturopath. He improved, but got worse once off the antibiotics. We saw the first signs of OCD (smelled his hands) emerge. Another swab produced a positive result. He then started Zithromax and probiotics. His behaviours improved, and the OCD stopped. However, same story: things are worse off the antibiotics (however, there's not an immensely drastic difference). He has, of course, tested positive again (he is a carrier), and the doctor wants to try Clyndamyacin (may erradicate strep in a carrier). Not surprisigly, the doctor is not convinced that my son's tics are from the strep, as it's not presently active. He's already mentioning drugs for down the road. I'm mad! We have made great efforts to improve his health, and haven't seen hugely noticeable results yet. Brief summary: We have had no screens since Xmas. He takes multi vitamins, vitamin C, probiotic, calcium/magnesium, zinc, B6, B12, and we just started digestive enzymes. He has epsom salt baths. No colours/flavours/preservatives. He will have IgG testing early April, as well as a urine test for yeast and tests for metals/vitamins. Here's my big question to all PANDAS families: Can he be a carrier, and not have such big problems with tics/OCD/behaviour if the rest of his issues are addressed (allergies, yeast, metals...)? I hate to do another round of antibiotics, if it's not necessary. I am so inspired by Alison's story, and I believe Heather and Ronnas have had success too. This is my only ray of hope. I truly believe after reading posts for hours on end that PANDAS and TS are able to be managed naturally. I am losing my little boy, and I want him back!! Please help!!

Thank you Chemar for your quick reply! My panic level is paused... thank you! Although I am worried about my son, I'm glad to have read your postings here, as it does show me how careful we have to be when helping our children. More and more I see how important it is to have an involved doctor... these kids seem to have very fragile body systems. The naturopath did say that the remedy was supposed to worsen things, as it was a way of bringing his body back into balance. He has only had two doses, so we will pause there, and look at other issues. He tested positive for strep two times this New Year (ie... he's a carrier), so unfortunately the timing of the remedies has overlapped with two courses of antibiotics, along with Florastore and probiotics, so it's possible that multiple things are in effect. However, I noticed a dramatic change within 10 minutes of the remedies. I will be sure to procede cautiously, and ask lots of questions.

Chemar - I am interested in your son's response to the homeopathic remedy. My son has been given 2 remedies, and I feel that it has brought on an increase in behaviour issues, as well as slight ocd. I was told that it would be out of his system within a month. Yet, your son had a reaction a year later. I am now worried about the future... and I feel SO BADLEY, as I was only trying to help my son. How can I fix the situation???

Carmon, I completely understand what you mean about your child waking up a different kid. I sympathize, and know the heartache associated with such distress. I am fairly new here, and a rookie at PANDAS, but my journey is beginning, as is yours. I will post about my son too, so perhaps you can learn from my experiences too. My son is 5 1/2. He had a sudden onset of tics last year, preceeded by separation anxiety, clothing sensitivity and emotional lability. Details are on another post about vocal tics. He tested positive for strep 3 weeks ago, and did a round of amoxycillin. He improved a lot (tics and behaviour), but worsened within 3 days of being off. The pediatrician is currently testing our family to see which of us are carriers. He will put any of us who test positive on Clymacidin (sp?) to erradicate strep in those of us who are carriers. Questions: - This is a strong antibiotic, and will be given with a probiotic. Ronnas, I think that your son was on it. Is it worth trying? Can a 3 week course be sufficient enough to erradicate at least some tics/behaviours permenantly? - Will this be a lifelong problem for my son? - How can I help my son long term? We have done no screens since Xmas. Likewise for preservatives, colours, flavours... He's on a multivitamin. Yet he has recently got worse (anxiety and new tics). I am scared of giving him too many vitamins without a doctor's advice. I can't find a doctor who will support these testimonials. They say, "It's contraversial..." - Do any other PANDAS kids have shiners under their eyes? Pale skin? Stuffed nose? - Does anyone know if Flonase (nasal spray for allergies) increases tics or hyperness (my son is not ADHD)? Any help would be greatly appreciated.

Marie- I applaude you for your positive posting about Pryncez's observations and efforts to research her student's behaviours. I fully agree. I do want to comment, however, on the fine line that educators walk. I am only speaking from experience of my son in K. I feel like his teacher has become more concerned about his tics than either his doctors or his parents. I say, if tics are neither interfering with one's educational progress, nor with social interactions, then educators should not need to be so concerned. However, communication is essential, as tics can be exacerbated at school. It is a fine line! I do take my hat off to teachers. What a huge endeavour it must be to teach our precious little children!!