Jump to content
ACN Latitudes Forums
patmom

Please help my daughter!!! What is happening with her? Catatonia symptom

Recommended Posts

Hello to all. 

My daughter 14 yo after vaccination DTaP and HPV, after it she changed a lot. Doctors dont want recognize brain injury after vaccine.The worst symptoms started 4 weeks ago, trouble with speaking, attention, walking, catatonia, mutism, all function regression.

Now we are in hospital, 10 days we was in neurological section, she did all test(MRI, blood test, ECG, spinal test)-all test are negative and look normal, we wait immunity test for infection in this moment. because our test look normal, they transfer us to mental section, I dont agree with their decision.

Now she is on ativan-lorazepam-9mg/day, it helps, but no so well. also she had 1/kg of IVIG.

I would like to know if it is auto-immune disorder? Can she has it if all test are normal? What test she need to do?

Thanks

 

 

 

Share this post


Link to post
Share on other sites

Where are you?  What hospital is your daughter currently in?  Any more new with respect to test results?

Did these symptoms come on suddenly?  Is your daughter otherwise neurotypical, or has she previously presented with autism or another neural disorder or "difference"?

Yes, these symptoms are ones that can show up in severe episodes of auto-immune disorders, but not every medical professional is going to recognize the signs for what they are.  When you had blood tests, what tests were included?  You mention having an "immunity test."  Via blood panels?  What testing is included there?  Make sure you're testing for ASO and anti-d-nase b (strep antibodies).  Catatonia (even narcolepsy) has been associated with untreated strep infections, and many people are classically asymptomatic for strep -- no fever or sore throat, but raging antibody levels nonetheless.

If you're spending time in the hospital, waiting, you might try getting a copy (it's available in digital format as well as paper) of a memoir by Susannah Cahalan called "Brain on Fire."  Susannah suddenly developed all sorts of bizarre neuro symptoms, some of which your daughter is also displaying.  She was studied and poked and prodded and tested, and they couldn't find the culprit; a set of doctors decided that she had a multitude of illnesses, both physical (seizure disorder) and mental (psychosis), but then one out-of-the-box thinking doctor noticed a few atypical behaviors and kept studying her and ultimately determined that she had developed some auto-immune reaction to some unknown microbe.  It's been a while since I read the book, but I don't think they ever found out definitively what it was.  I believe Susannah was treated with multiple interventions, but infusions were definitely in the mix, and she recovered. She was in New York, and the doctor who essentially saved her was Dr. Souhel Najjar.

Share this post


Link to post
Share on other sites

Thanks. Monday I will ask them for all name test. Doctor did a spinal test to determinate infections and immunity. Test anti-NMDA like Susannah Cahalan is negative, normal.  It is very hard really. I am in hospital in this moment, now is two weeks, they can not put a diagnosis. Only she has lorazepam for catatonia, 9 mg per day.

Share this post


Link to post
Share on other sites

I wonder whether one of the docs could consult Dr. Najjar to rule that set of concerns out. When he spoke at the beginning of the month at the Common Threads conference it was clear that ultimately, like pans, pandas some cases of encephalitis are ultimately clinical diagnoses like PANS/PANDAS.  He explained that in a not insignificant number of cases, antibodies don't get elevated and one must take the entire clinical picture into account. I am wishing you all the best.

Share this post


Link to post
Share on other sites
On 3/31/2018 at 9:54 AM, tk1234 said:

I wonder whether one of the docs could consult Dr. Najjar to rule that set of concerns out. When he spoke at the beginning of the month at the Common Threads conference it was clear that ultimately, like pans, pandas some cases of encephalitis are ultimately clinical diagnoses like PANS/PANDAS.  He explained that in a not insignificant number of cases, antibodies don't get elevated and one must take the entire clinical picture into account. I am wishing you all the best.

Hi, Thanks for message. I asked about PANDAS, and my doctors said, she doesn't have symptoms PANDAS, she doesn't have fever, tics,.

Her symptoms are catatonia. They dont understand what is the cause exactly. 

Maybe vaccine cause permanent brain damage? 

Share this post


Link to post
Share on other sites

I am sorry to hear about your troubles and wish your daughter a speedy recovery.

Unfortunately, vaccines can cause serious injuries especially the HPV.  There are many reported incidents regarding this vaccine.

Definitely hold onto tightly to all medical records and if, unfortunately, your daughter might have some lasting injuries you should contact a lawyer and apply for compensation to the Vaccines Courts. Have the administrating doctor report this reaction to VAERS (Vaccine Adverse Effect Reporting System)  as soon as possible.

Hope you might find any other solution to help you.  

Share this post


Link to post
Share on other sites

Hi. My daughter is not well. They want to increase dose of lorazepam from 7.5 to 15mg for Catatonia. They dont have any idee what is happening with my daughter. Anti-NMDA is normal, MRI-normal, EEG-normal, all test are normal. My daughter started regression after vaccins DTaP+HPV. I want my daughter back.  

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now



  • Announcements

    • Administrator



      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

      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
×