Jump to content
ACN Latitudes Forums
  • 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


      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


  • Content count

  • Joined

  • Last visited

  • Days Won

  1. Hi pepper1, My son is now 17 and he still rarely leaves the house. He made some improvement for a while and went out a couple times to his friends house but that was about the extent of it. He will go to the occasional doctor appointment, but other than that he doesn't leave. He hasn't been to a store, School, or other facility in four years. He is just going to have to get his GED through the local College because the school district has washed their hands of him. Over the past few months he was having nosebleeds quite a lot.... meaning a couple times a week at least. At first I didn't think much of it but then he started complaining that his anxiety was getting worse and he wanted to go on anxiety medicine. This coming from him and actually communicating to me was a really big deal so I listened. I consulted his pediatrician who put him on a very low dose of Zoloft...25 mg. It has been two weeks that he has been on the Zoloft and it hasn't helped much. Yesterday he came out of his room and told me that he wants to go on the PANDAS medicine. I asked him if he meant the antibiotics and ibuprofen and he nodded yes. I finally realized that the nosebleeds could be related to a possible strep infection in his sinuses and that a flare-up is starting. It is also possible that because my husband and I have been sick with something viral he may be reacting to it. At any rate I am calling his pediatrician in the morning to see if we can do some kind of strep swab and then get him back on antibiotics. I have noticed that the antibiotics with ibuprofen usually seem to help with his flare-ups but it doesn't completely eradicate all his symptoms. If only IVIG were affordable for us we would be doing that in a heartbeat.
  2. Hi tinaw. I just wanted to check in with you to see how things are going. Are things any better yet? Have you found any solutions to getting your son out of the home? It's still a work in progress with my 16 year old. He still won't leave the house but has improved in other ways by reconnecting with his friends through online gaming. And his tics are gone. Anxiety still lingering enough to keep him homebound. But he did have a friend come over last weekend...first time in a year! I know we're kind of in the same boat with our boys, so I just wanted to check with you. Hang in there!
  3. Lyme-N

    I'm curious about this treatment too. Cannot afford IVIG right now and antibiotics don't seem to be having that much of an effect.
  4. Btw, I forgot to mention that one thing that helped us to get him to go to doctor appointments was to start playing the video games with him. He loves us being a part of HIS world. So I would give him plenty of preparation with appointments. I would remind him daily that his appointment was coming up, so he could allow himself to mentally prepare for it. I would also allow him to go to the car once the doctor was finished examining him. It provides a comfortable place for him to be alone and stress-free.
  5. Wow! When I first read your post, I had to go back and read it again because I thought I had written it! We are in the same situation however my 16 year old son is now going to doctor appointments occasionally. But that's the only time he'll leave the house. He hasnt been to a store or in school for 1.5 years now. He would have been a junior this year if all had gone normal. But at 14, his freshman year, he had the worst flare to date, and it has incapacitated him. He plays video games all the time too. It does help to distract him when going through flares.
  6. Could it be pandas

    I'm so sorry you daughter and family are going through this. My son was 14 years old when his worst flare up of autoimmune encephalitis occurred. Of course we had no idea at the time that that was what it was. He has a diagnosis of autism since age 3. He kept having what we called autistic regressions every few years. Then at 14 he started having paranoia, hallucinations, severe anxiety, sleep disturbances, ocd and loss of communication. He could no longer attend school due to the cognitive damage it caused over the years. His IQ dropped 18 posts. Once an honor roll student with friends, he is now without friends and extremely agoraphobic. He has become completely disabled by it. Diagnosis PANS/PANDAS. HOWEVER, I still wonder if it might be some other type of autoimmune encephalitis. Antibiotic treatments aren't helping much and steroids made his tics worse. Do a Web search for Anti-NMDA Encephalitis and see if it sounds like what your daughter may be going through. It is much more common in females aged teen through child bearing years. It is often related to ovarian teratoma cysts. It can be diagnosed through bloodwork and cerebral spinal fluid( lumbar puncture) Please keep us all posted. Hope you find some answers soon.
  7. Can anyone tell me what the difference is between the two, or are they basically the same thing? Has anyone's child been diagnosed with Anti-NMDA receptor encephalitis via CSF analysis? After reading about this type of encephalitis, the similarities are striking!
  8. Paying for IVIG?

    I guess what I meant was, if insurance isn't paying for it, how does a person get the funds to just drop down $10,000, $20,000+ on treatment? Especially if you are poor or middle class? Do you take out loans? Sell your car? How do you get the money? Are you wealthy?
  9. How does one pay for IVIG? Especially if insurance refuses to cover it? Does it have to be paid up front in full? Any information would be greatly appreciated. Thanks in advance.
  10. Hi we drove from a neighboring state so that my 16 year old son could be seen there in the hopes of getting IVIG.. He already had a diagnosis from another physician in AZ, but this was just to confirm it. Staff was ok. I think they are not quite as knowledgeable as I had hoped. RX for antibiotics...yet again. Steroids caused an increase in tics. Was discontinued. I was hoping he would see the sleep specialist and nutritionist as his sleep schedule is a mess and he has limited food intake...he's only 117lbs and 6'1". Please send me a private message and I can give you a more detailed response.
  11. Thank you! That makes me feel validated because I had been reading alot on Lyme and the confection connection and when he told me that he couldn't have it, I was pretty shocked. The first specislist he saw diagnosed him with PANS/PANDAS. She told us specifically that he needed to see a Lyme specialist based on the results of the Western Blot. Several months prior to that appointment, we were camping in Colorado and my son was feeding wild chipmunks and squirrels. 3 months later, he develops symptoms, can no longer function, or go to school, etc etc. The worst exacerbation we had seen. He had not been diagnosed yet when all this occurred. After coming across information about PANS and Lyme, it prompted us to seek the opinion of a specialist in AZ. But we reside in New Mexico. We've been having to travel to AZ for appointments as New Mexico is not up to date yet regarding autoimmine encephalopathy.
  12. Thank you so much for the response. He has been through a host of testing and came back showing mycoplasma, coxsackie, HHV-6, and western blot positive for 3 bands. Immunologist says he does not have Lyme because he does not have 5 bands per CDC guidelines, which I am skeptical about his opinion on that. Currently strep antibodies are negative, but have been positive in the past. He's been suffering through this for a good 14 years. He was diagnosed with high functioning autism at age 3, so for years we just assumed it was that. But we started noticing a pattern with illness, and each time resulting in some serious regression. He is now 16 years old and cannot go to school anymore nor leave the home. His last big exacerbation was it 14 years old, during which time he had a psychotic episode. His cognition has declined by 15 points on his IQ test. He has become severely disabled by this and can barely communicate anything. It's devastating because he was on an honor roll student in between his flare-ups and had several friends. Now he is homebound and a social. I will contact his immunologist and his pediatrician regarding his reaction to the steroid and hopefully they will have some thoughts.
  13. Hi everyone. My son's immunologist just prescribed 50mg prednisone for 5 days to take down inflammation. 2 days in, his verbal tics have increased to where they have become incessant. He has also started a new tic where he violently shakes his head back and forth all while having the verbal tics. Is this a normal response to steroids? This is his first steroid treatment. Before he just took Nsaids for inflammation. Thanks Amy
  14. Hi. My ds is 16 and I've noticed that he tends to get migraines often in the beginning of his flares, which tend to taper off with time. Does anyone notice this in their child during a flare?
  15. Hi. My 16 year old ds seems to have migraines often at the beginning of his flares, which tend to subside as time goes on. Have any of you noticed this pattern in your children during flares?