Jump to content
ACN Latitudes Forums

nola

Members
  • Posts

    47
  • Joined

  • Last visited

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

nola's Achievements

Newbie

Newbie (1/14)

0

Reputation

  1. Sorry. Another question...Why do many of you go to LLMDs? Dr. Harris is an LLMD. Why not just go to a PANDAS doctor? Or are there so few of them out there? Thanks.
  2. Hi everyone, Thank you so much for the replies and encouraging messages. I definitely need encouragement right now because our son's tics are increasing yet again. He's rolling his eyes so much that he's making himself dizzy! It's so scary. He's also making this squeaking noise (sounds almost like a duck) and gasping (like he's hyperventilating). All scary. So, I tried to get a new referral to Dr. Herbert Schrier (head of psychiatry)at Children's Hospital in Oakland. It was once again turned down because it's under mental health. Why is that? Anyway, has anyone heard of him? I really appreciated all the doctor suggestions. I think we'll try Dr. Steven Harris in Redwood City. I'm a little afraid to find out how much this will cost but we'll do our best to get through. It's so frustrating and stressful that all of this is out-of-pocket. Are most of you doing long-term antibiotics? Or small bursts? Which is better? What are the side-effects of long-term use? Lastly, (I don't know if there's an answer but I just want to ask) what is the prognosis for kids with PANDAS? I read that many kids get better in their teens. Is this true? Will it ever get better? Thank you again, everyone! Nola
  3. Hello, I wrote a post a few weeks ago about my 8yo son. I appreciate all of the replies that I received and I think I now need to explore PANDAS. He was diagnosed with TS in October 2010. His vocal tics were the worst I've ever seen them. I was so scared for him. Although I barely know anything about PANDAS, it was always at the back of my mind. Now that I'm ready to take on this new challenge, I would love some advice on what I should do first. Our ped referred us to a psychiatrist who specializes in PANDAS. Unfortunately, our referral was refused. Since it looks like we'll have to pay out-of-pocket, I'd love some recommendations on PANDAS doctors in the Bay Area. We live in Oakland, Ca. My question is...if you looked back on your road to help your child, what do you wish you had done first? I've read a few things about antibiotics. This sounds like the first step. I'm reading several opinions on whether a child should be on low doses for a long period of time or high for a shorter period. I'd love to hear any thoughts on that? My child is allergic to amoxocillin. Will this impact any future remedies. Also, are there any other tests we should explore to get a stronger confirmation on whether or not my son has PANDAS. So far, all we've got is a blood test showing his titer levels or ASO levels are high (not sure if I wrote that correctly). Is their a natural approach to helping my child besides antibiotics? What if we don't do anything? Will it get worse? What is the prognosis for kids with PANDAS? Sorry again for all my questions. My anxiety level always goes up when I'm writing these posts and all my fears start pouring out. I really appreciate any help. Thank you, Nola
  4. Thank you so much for the replies. In truth, I've been scared to read the posts. I thought I was starting to get a handle on the TS diagnosis and now I'm not sure what I'm dealing with. I don't know where to begin. As confusing as TS was to figure out, I think PANDAS has me stumped. We were referred to a psychiatrist who specializes in PANDAS but our referral was denied. What do I do now?
  5. Hi, Just wrote a new post about our experience with the Kirkman multi so I won't get into it right now. I just wanted to know if anyone would like our Kirkman (flavored) multivitamin. The company accidentally mailed the flavored rather than the non-flavored brand. My son hated it so we used it only twice. Anyway, it's just sitting in the cupboard and I'm happy to gift it to someone who might actually use it. Best, Nola
  6. Hi, My 8 year old son was diagnosed with Tourette's syndrome last October. Since then, we've gone through a rollercoaster of trials and tribulations. I just posted something on the TS forum and thought I'd copy it here. I'd love the advice from all of the PANDAS' experts. Here's the post: Hi everyone, Now that school has started it's been difficult for me to visit the site. Of course, I seem to be pulled toward it when my son's tics start escalating. In the summer, with the help of the many informative and supportive souls on this site (thank you!), I decided to try a new multi. We started using the new Kirkman multi. I thought I'd write about my observations. But, please stay tuned...I have another important question regarding PANDAS. Please bare with me. Here goes... My 8 year old son's tics have been getting progressively worse. By the beginning of this summer, my son was doing head turns, eye rolls, lip-popping and smacking (with spit), throat clearing, and intense blinking. I'm pretty sure there were more tics that I have forgotten. In November, we stopped homeopathy because we thought his tics got worse. They were actually intensely scary at the time. We were also doing cranial therapy, which we've stopped during the last few months. In mid-July, his tics were very bad. We started acupuncture and Kirkman supplements at around the same time. We continued to use Natural Calm at night. So, to summarize, we now only use Kirkman, Natural Calm and occasional acupuncture. Oh, this week he is also getting the HERBST appliance. Ugh. Within two weeks of taking the multi, his tics seemed to be getting better. His lip popping was less noticeable. He just had some pretty bad blinking. By the end of summer, his tics seemed to be only noticeable to us. Our friends barely noticed a thing and commented on how he seemed to improve. He did, however, have some intense separation axiety. He would cry when I would go out at night with friends or would worry every time I left the house. All in all, I felt like for about two months, I could start breathing again. Could it be a coincidence that the new multi helped reduce his tics? I wanted to wait to post anything until school started so I could see if stress would bring on more tics. It's been about 3 weeks of school. This weekend, his tics seem a little worse. I'm hearing more lip smacking, seeing some head turns, he still does eye rolls. He's getting a bit annoyed with the whole thing. One question I have is what do I do next? Should I be supplementing with something else? I noticed a post from Chris mentioning GS (not sure what that is). Is that something I should give him, too? What are my next steps? Okay, here's the big question (or concern). The pediatrician just called and said that my son's blood work tested positive for antibodies and elevated anti-stretolycine O (please forgive the spelling) She said something about the antibody for Anti-DNASE B. I'm sure I'm butchering all the spellings. What is all this? Does this mean he has PANDAS? If so, are all of the things I've been doing worthless?? If he has PANDAS, would anything I do even help him? What's the difference between TS and PANDAS? Is PANDAS more treatable? With antibiotics? I really apologize for all of the questions. This just threw me for a loop. I don't know what to do now. I appreciate any help and advice I can get. Thank you. Nola
  7. Hi everyone, Now that school has started it's been difficult for me to visit the site. Of course, I seem to be pulled toward it when my son's tics start escalating. In the summer, with the help of the many informative and supportive souls on this site (thank you!), I decided to try a new multi. We started using the new Kirkman multi. I thought I'd write about my observations. But, please stay tuned...I have another important question regarding PANDAS. Please bare with me. Here goes... My 8 year old son's tics have been getting progressively worse. By the beginning of this summer, my son was doing head turns, eye rolls, lip-popping and smacking (with spit), throat clearing, and intense blinking. I'm pretty sure there were more tics that I have forgotten. In November, we stopped homeopathy because we thought his tics got worse. They were actually intensely scary at the time. We were also doing cranial therapy, which we've stopped during the last few months. In mid-July, his tics were very bad. We started acupuncture and Kirkman supplements at around the same time. We continued to use Natural Calm at night. So, to summarize, we now only use Kirkman, Natural Calm and occasional acupuncture. Oh, this week he is also getting the HERBST appliance. Ugh. Within two weeks of taking the multi, his tics seemed to be getting better. His lip popping was less noticeable. He just had some pretty bad blinking. By the end of summer, his tics seemed to be only noticeable to us. Our friends barely noticed a thing and commented on how he seemed to improve. He did, however, have some intense separation axiety. He would cry when I would go out at night with friends or would worry every time I left the house. All in all, I felt like for about two months, I could start breathing again. Could it be a coincidence that the new multi helped reduce his tics? I wanted to wait to post anything until school started so I could see if stress would bring on more tics. It's been about 3 weeks of school. This weekend, his tics seem a little worse. I'm hearing more lip smacking, seeing some head turns, he still does eye rolls. He's getting a bit annoyed with the whole thing. One question I have is what do I do next? Should I be supplementing with something else? I noticed a post from Chris mentioning GS (not sure what that is). Is that something I should give him, too? What are my next steps? Okay, here's the big question (or concern). The pediatrician just called and said that my son's blood work tested positive for antibodies and elevated anti-stretolycine O (please forgive the spelling) She said something about the antibody for Anti-DNASE B. I'm sure I'm butchering all the spellings. What is all this? Does this mean he has PANDAS? If so, are all of the things I've been doing worthless?? If he has PANDAS, would anything I do even help him? What's the difference between TS and PANDAS? Is PANDAS more treatable? With antibiotics? I really apologize for all of the questions. This just threw me for a loop. I don't know what to do now. I should probably start posting on the PANDAS site but it's hard to leave my support system here on the TS forum. What do I do now?? Thanks, Nola
  8. Hello, My 8 year old has had tics since 3 and has been diagnosed with TS. We have a 6 year old daughter. What are the chances that she will have TS?? I feel like I am constantly staring at her. Any repetitive movement makes me fear TS. It looks like she is doing a neck thing. It's freaking me out!!! What is the percentage that she could have it too? So worried.
  9. Thanks for your recommendations. I just read your post about your daughter. I'm so sorry it's been difficult. I also wish I could take the illness for my son. Your daughter is lucky to have a parent who never gives up. Thinking of you.
  10. Thanks for your recommendations. I just read your post about your daughter. I'm so sorry it's been difficult. I also wish I could take the illness for my son. Your daughter is lucky to have a parent who never gives up. Thinking of you.
  11. Hi everyone, I finally received my copy of Sheila Rogers' book and here I am at midnight motivated to get started. I think I really need professional help. I think I'd like to start with an environmental allergist and a naturopath. Does anyone live in the Bay Area? I live in Oakland, California and would love any recommendations in the area or surrounding. Are any of these things covered by insurance? I'm sure they aren't. Thanks everyone!
  12. So happy to hear that you are seeing positive results. I'm thinking of starting this vitamin as well for my son. I checked on Amazon and there were a few different types: Kirkman Spectrum Complete II Powder-Trial Size, Spectrum-Complete Powder 454gm for $190, and Spectrum-Complete Powder-Hypo 454gm for $190. Mythree, can you tell me exactly which one you get? I'm just worried about getting the wrong one. =? Does it specifically say for children because I didn't notice that on the site? Where do you all order it from? Thanks so much. Nola
  13. Thanks again, Chemar. I feel like I've been on the site constantly during the last few days. I always seem to make my way back here when it gets bad. We did try L-carnitine a while back but our homeopath urged us to stop using it. Something about it being a diet supplement for wrestlers?? Not sure if it impacted my 45 pound 8 year old. Maybe I should try it again. How much would you recommend? I searched "tourettes meds and side effects" last night while ds sat in his epsom salt bath. It freaked me out!
×
×
  • Create New...