Sign in to follow this  
Followers 0
tpotter

Conference

47 posts in this topic

 

Thank you, I have sent this along to our PANDAS-friendly but unable to treat (Canadian practice) pediatric psychologist.

we believe myself and my son have bartonella, but he is not handling any treatments at all, makes his rages psychotic, just single drop of an herb makes him crazy, wondering if you could share your LLMD with me and if anyone has heard of someone going psychotic on the slightest bug killer?

 

i want to comment only on this posting by dgfindley -- if your kid reacts so much, you may want to figure out his metyhilation mutations and deal with them first before getting any medication. it might be helpful

Share this post


Link to post
Share on other sites

Did Dr Agaliu say anything about when he may publish something? Or Cunningham? The past several conferences (several years worth)) they were in the verge if publishing - and it's been so long. It's so frustrating. Dr A has only been working pandas for 2(?) years or so-about .but Dr C has had thousands of blood samples from years of research.

I am the biggest fan if those two- the raw science and data is what will ultimately lead to acceptance and the best, most targeted, treatments, but they need to get it out there to the medical community.

EAMom likes this

Share this post


Link to post
Share on other sites

I too heard that it was "coming".

 

On a different note I wanted to share some very practical tips I got out of the conference.

 

-each child should have their own tooth paste and their brushes and paste should be stored separately. We bought little plastic pencil boxes and gave each kid their own set if brushes and paste that we will store separately and run through the dishwasher periodically. I never thought of the strep being transmitted from paste to brush!

 

-Peggy Chapman mentioned that a flare can be brought in by a simple cold or virus, even if the child doesn't seem to contract it. Another cause of flares are loose teeth or teeth coming in. Any source of inflammation in the body can set off a flare. She said not to panic. These types if flares general last only 8 days and they will return to their baseline soon. That gave me great perspective!

 

-Many of the doctors stated they have seen good results from tonsillectomy. Correct me if I'm wrong, but I believe it was Dr. Latimer that said she likes to see them get a dose of IV steroids prior to surgery as the post surgical inflammation can set off a flare.

 

-the head of the MGH CBT program gave guidelines on CBT for PANDAS. Do not start CBT or practice ERP during a flare. Instead work on relaxation techniques and crisis management. When a child is well enough resume treatments. Even after remission its a good idea to continue to meet with your therapist for "check in" sessions once a month so kids retain their skills and will have more resources in case they flare again.

 

-Dr Swedo reminded all of us not to "chase titres" because they can remain elevated for a year or more post infection. She also started out the conference by reviewing her criteria for PANDAS and urged us to look elsewhere if we did not remember the day and hour that our child changed. Dr. T respectfully disagreed later in the conference, but can appreciate why they need to set such specific criteria until the hypothesis are proven.

 

-Dr. Bock gave his talk about the gut/brain connection. He made us all repeat after him, "leaky gut, leaky brain." He said curcumin is a great alternative to ibuprofen because long term use of it can cause the gut to become impermeable. He also said we should check for and treat yeast. Kids that are on long term antibiotics are especially at risk for yeast.

 

-several doctors discussed briefly the importance of vitamin D. The range they like to see our PANDAS kids is between 50 and 70. The low end of normal is around 30 but this is too low.

 

-Peggy Chapman reviewed how to handle a melt down. It work!! Check her slide show for details. She also gave advice on how to explain PANDAS to children.

 

-Dr. Swedo said that it can take an entire year for the full benefits of IV IG. Dr. Walter said that you are considered a "responder" if you experience a dramatic improvement of symptoms within the first few months. Improvement is measured using Y-bocs (Yale brown OCD test) Dr. Walter would not give a second treatment if there the patient didn't respond the first time. Her represented studies showed the the the second IV IG showed less dramatic improvement than the first.

 

Dr. Swedo said the plasmapheresis is only available at very few locations in the country and is therefore reserved for the most life threatening cases. It is a safer and more effective treatment than IV IG. Correct me if in wrong but I heard her say that plasmapheresis is an instant cure.

 

Please feel free to add advice and info that you found particularly helpful.

Edited by JoyBop
rowingmom likes this

Share this post


Link to post
Share on other sites

Just when you think it's safe to use auto-correct on your iphone! No, church is not the answer. I went back and edited it to say Curumin is a good alternative. I believe he said it is an antioxident as well as an anti-inflammatory.

searching_for_help likes this

Share this post


Link to post
Share on other sites

Curcumin as an antiinflammatory. Dr Walters said you get diminishing returns with each IVIG so be judicious in when you choose the first.

 

Plasmapheresis is the best choice but do to the difficulty of finding hospitals equipped to do it, they have settled on pursuing IVIG as the choice. I thnk that is a mistake. It's hard for me to accept that my son must have second best because it's too hard to get. I think they underestimate parents. If they would come out and promote plasmapheresis as the top choice, I think we as parents could start a movement to that, as well. It's covered by insurance. It requires hospitalization and a pic line. Maybe more expensive but I think it was Dr Latimer that said no more risky when you take into consideration IVIG is not without risk.

 

It provides near instantaneous improvement, as reported by Dr Latimer. No waiting months to a year for maximum benefit.

 

One of them gave a statistic on the incidence of siblings with PANS. it's high. I think in the 40% range but someone who took notes can correct that.

Edited by nicklemama

Share this post


Link to post
Share on other sites

Dr. Bock did say that Curcumin is also an anti-oxidant. Im going to try to find a good source of it.

 

Here is a study I pulled off of Pubmed

 

"Abstract

Curcumin, a widely used spice and coloring agent in food, has been shown to possess potent antioxidant, antitumor promoting and anti-inflammatory properties in vitro and in vivo. The mechanism(s) of such pleiotropic action by this yellow pigment is unknown; whether induction of distinct antioxidant genes contributes to the beneficial activities mediated by curcumin remains to be investigated. In the present study we examined the effect of curcumin on endothelial heme oxygenase-1 (HO-1 or HSP32), an inducible stress protein that degrades heme to the vasoactive molecule carbon monoxide and the antioxidant biliverdin. Exposure of bovine aortic endothelial cells to curcumin (5-15 microM) resulted in both a concentration- and time-dependent increase in HO-1 mRNA, protein expression and heme oxygenase activity. Hypoxia (18 h) also caused a significant (P < 0.05) increase in heme oxygenase activity which was markedly potentiated by the presence of low concentrations of curcumin (5 microM). Interestingly, prolonged incubation (18 h) with curcumin in normoxic or hypoxic conditions resulted in enhanced cellular resistance to oxidative damage; this cytoprotective effect was considerably attenuated by tin protoporphyrin IX, an inhibitor of heme oxygenase activity. In contrast, exposure of cells to curcumin for a period of time insufficient to up-regulate HO-1 (1.5 h) did not prevent oxidant-mediated injury. These data indicate that curcumin is a potent inducer of HO-1 in vascular endothelial cells and that increased heme oxygenase activity is an important component in curcumin-mediated cytoprotection against oxidative stress."

rowingmom likes this

Share this post


Link to post
Share on other sites

He suggested that my DD try Lutiforce, which has luteolin bioflavonoid in it. This is to replace ibuprofen.

 

Joybop - what did Dr. Bock say was a good alternative to Ibuprofen? Thanks so much for the information!

Edited by NancyD

Share this post


Link to post
Share on other sites

There is a PANDAS parent blog called "PANS Life" with a good summary of some of the presentations. It is called "The Conference: part 1" so I assume there is more to come!

 

http://www.panslife.com/pans-life-journey/2013/11/14/the-conference-part-1.html

Edited by EAMom
philamom and nicklemama like this

Share this post


Link to post
Share on other sites

This is all such great information! my boys are twins (almost 6). one has had motor and vocal tics with mild OCD since about 3 years old. Looking back, I do not know if any of his "flares" were due to infection. He has had strep 2x in his young life. However, the flare that got us a diagnosis of TS/OCD/ADHD was in May. He was extremely severe. I did not know about PANDAS at that time enough to get a throat culture. Instead I just addressed his diet and methylation with a homeopathic MD. I was able to get his tics and behaviors down 99%.

 

Fast forward to Nov. His tics spiked over the course of a week. I got him a STREP test and it was positive. he had no symptoms. He is on amoxicillan now and we may take some blood to determine how to proceed. He also had a stool test done that we are waiting on results for. Should be three weeks more for that and then we can see what types of bacteria are in his gut.

 

my question is: since I suspect one of my twins to have PANDAS, should I suspect my other son to have it too? my other son has no tics, maybe some OCD (not sure if its just who he is) and no other symptoms. He is well adjusted at school.

 

I think I am going to get my other son a STREP test this weekend too. Just to see.....

 

Lastly, the next conference in Atlanta! I live in Atlanta!

EAMom likes this

Share this post


Link to post
Share on other sites

Cara615-

Yup, I would definitely watch out for the other twin. There is a high sibling rate in PANDAS. I think it's possible his milder symptoms are early or low grade PANDAS/PANS. Throat cultures (yup, there is a lot of stealth strep w/out typical symptoms) and other monitoring for infections is important.

 

Are they identical twins?

 

I should add that even if your other son doesn't have PANDAS, it is important to make sure he is clear of infections (ie make sure he isn't a strep carrier--do the throat culture) since PANDAS kids will react to illnesses and strep in other members of the household.

Edited by EAMom

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
Sign in to follow this  
Followers 0



  • 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
  • Help us learn if blood type has a correlation with PANDAS/PANS   21 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


      • O +
      • O -
      • A +
      • A -
      • B +
      • B -
      • AB +
      • AB -
      • I Don't Know

    Please sign in or register to vote in this poll. View topic