• Announcements

    • Administrator

      Forum Community Guidelines

      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator

      Disclaimer and Privacy Policy

      Disclaimer

      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010

powerofprayer

Members
  • Content count

    105
  • Joined

  • Last visited

About powerofprayer

  • Rank
    Advanced Member

Profile Information

  • Gender
    Female
  • Location
    NC
  1. Where would you find the manufacturer of the drug? I've checked my bottle of doxy but I don't see any info there? this concerns me a great deal!
  2. http://www.ocfoundation.org/PANDAS/ This is a great article that someone here shared with me.. I printed a copy for our provider and she read over it and was willing to give my dd 6 weeks of Zith. The article also guided her in ordering certain blood tests. Good Luck!
  3. SF Mom, Thanks for your input. There was no way they were even considering giving me three weeks of Doxy. I'm guessing you see an LLMD. I may need to find one in NC just in case. I do feel that some tick parts may have been left behind We were in the car when I noticed it and my husband claims he had to remove it as fast as he could because I was "overreacting". Pffft....do you think kicking and screaming, "Get it off, get it off" is overreacting? Anyway if something was left behind that would explain the bad reaction, right? But it probably has increased my chances if getting a TBI too doesn't it?
  4. JoyBop, By treatment to prevent infection, what do you mean exactly? Is it a one time prophy dose of doxy? I went in today because my reaction has been horrible. It's beyond itchy and extremely red and a little swollen. Anyway the NP I saw thinks cellulitis so she gave me 10 days of Keflex. She also gave me ONE 200mg dose of Doxy since we were still in the 72 hour window of the tick being removed. Is that dosage typical of mainstream doctors? The pharmacist told me its pretty standard to give that one time dose in NC.
  5. Ewwwww, ewwww, ewwww! I had a tick on the back if my leg on Saturday. DH removed it for me but then threw it out. I so wish he would've held on to it so we could've identified the species. I'd feel so much better if I KNEW it was not a deer tick. (I know the others transmit disease, but its the Lyme i most worry about). Since yesterday the site has been very itchy and has a small raised bump, like a mosquito bite. From what Ive read this is normal in the first 48 hours after a bite? My doctor said that Lyme is unlikely if the tick was attached less than 48 hours? True??? so is this just a wait and see situation? At least I KNOW I've been bitten so if those flu like symptoms were to start Id know why. From what I understand the classic EM rash doesnt always show up. Any advice/info is appreciated.
  6. Hi! A few questions after some recent testing dd10 has had. Her PCM ran a bunch of tests at the end of feb and gave her a 6week trial of azith. We didn't see enough improvement in her tics for us to say YES, This IS PANDAS though. At the time she had cultured + for strep. Took her in for a follow up last week (this is about a month post abx) and the culture was again +. PCM says she is most likely a strep carrier and is referring to ENT. My question: is being a step carrier significant in the non PANDAS world? What does it mean exactly? Can she infect others being a carrier? She doesn't get the classic strep symptoms herself. Other tests came back normal. They Lyme test was negative, although this was just a blood test so I don't know how reliable? She's never had a known tick bit though. The myco P was 2.26 which is high. And the igM was well under the reference range. PCM said the elevated IGG simply means she had the bacteria in the past....not an active infection. So i took this to mean that she will always measure high because she has immunity now? Am I way off track here? Her vitamin D was low but the PCM said that is quite "normal" for a 10 year old and said we could supplement if we wanted. Th only allergen she reacted highly too was dust mites. This was an IgE serum test for about 90 items. Everything else came back below the reference range. Besides dusting/vacuuming more, does anyone have tips to control those little organisms. TIA....I know there are a lot of questions here. I appreciate ANY help/advice.
  7. Mar, My dd, now 10, had a mouthful of hardware last year. She had a lip bumper, the expander and 4 braces on her front four top teeth. The expander was in a total of 8 months ( though we only "expanded" for three weeks or so) as was the lip bumper. The braces were in about 5 months. She had no noticeable increase in any of her tics. Once she finished this phase 1 treatment and everything came out though, a vocal tic returned that we hadn't seen in awhile. At least not consistently. That started around end of November and its still present. I really can't say that the tic is caused be removing all those devices though. ( But the thought does creep into my mind from time to time) I think it's just the nature of tics/TS instead. We are very happy with the result of the treatment. She will need to have full braces once all her baby teeth are out. Good Luck!
  8. Thank you, THANK YOU for the advice. It was a successful appt. our provider agreed that a trial of abx is a pretty benign treatment plan. Like I said before I am not convinced this is PANDAS or PANS. But I can't let it go without a solid try. So she gave us 6 weeks of Azith. ( Im wondering though if the dosage might be low.......Can anyone chime in with their azith dose) i am so happy that she is willing to work with us in finding answers. She also ordered some extensive blood work. That was the only negative part to the day. Dd has severe anxiety for blood draws and we could not get it done today. I'm hoping my dh has better luck tomorrow. He's not as high strung as I am so he's probably the better one to take her for this. The article Chrissy posted is excellent. As our FNP was skimming it, I'd see her nod in agreement and make quick notes and she'd add things to the lab work up based on what she was reading. I was so grateful not to get shot down. She asked if she could keep the article. I told her "by all means, please school the rest of the clinicians" Nice to know there are mainstream providers out there who DO want to help and are humble enough to admit they don't know everything, but are willing to learn.
  9. I've only read about Kava Root. Never have tried it though. Duke did some studies about 10 years ago with the conclusion that it is just as effective as Benzos. There is/was some concern about liver damage but according to the duke study its NOT an issue. I don't thing it's meant for long term though. Google it. You'll get lots of info.
  10. What would be dieing off? Do we know?
  11. Yes I'd say that's a pretty clear cut case. How is your ds these days? My dd has tics, motor and vocal that have waxed and waned over the years. but for us there is no severe OCD or known strep infection to relate it all to. Just a suspicion on my part, mostly because of a high cam kinase score three years ago. So Even though I'm not CONVINCED we are dealing with PANDAS I do not want to leave one stone unturned. I'm hoping a trial of abx will give me some answers. Whether to pursue PANDAS or head in Another direction.
  12. Thanks everyone. I actually am NOT familiar with that scale so that is great advice. MomtoJake....did you just suspect PANDAS too and were wanting a trial to confirm or decline your suspicions?
  13. I'm looking for more of the wonderful, invaluable advice I see on this forum. My dd now 10 has had tics since age 4. She probably has some real minor OCD but nothing that interferes at this point. I asked our FNP if she'd be willing to give us a trial if abx to see if we notice improvement. I was bold and straight up asked for a month. I think this is where she got apprehensive and said she'd like to run tests first. I'm not sure what she has planned but I'm guessing ASO and strep culture. I told her that its not uncommon for those results to not show anything (from what I've read here) She at least has heard of PANDAS.....says she even has a patient with a confirmed dx. I think that child receives his/her tx in another city though. So what info should I bring her. Beside my dd's history I mean. Should I even bring up use high Cam Kinase score she had three years ago? How can I explain easily what that means. That Cunningham article is way above my head. What abx should I request? In my original message to her I asked for augmentin or azith. Those SEEM to be the ones with good success rates. Anyone here been successful in convincing a dr for a trial? What was your argument? TIA for any advice for this upcoming appointment. Prayers will help too!
  14. http://clinicaltrials.gov/show/nct01172288 I posted this on the tics/TS board a couoke weeks ago. Posting it here toomsince this duscussion is on NAC. The above link is a trial right now using NAC as a possible treatment for tics (in TS).
  15. I thought tics are thought to be a result of too much dopamine, not too little? I am referring to TS tics though so maybe theres a difference depending on the condition causing the tics. Now I'm really confused.