LaurenK

Dr Najaar gives me IV steroids, 3000 mg pulsed over 3 days- puts me in remission within a month. Lasts about 6 months.

Agreed, it doesn't seem like it would be autoimmune since none of the "main PANDAS autoantibodies" are elevated. To me, with no high antineuronals, I wouldn't pursue IVIG.

Has your child gotten sick. Does he receive monthly IVIG?

I read a lot here about tackling the underlying infections before IVIG can fully work... or that those who have underlying infections relapse when the IVIG wears off. I was wondering if any of this is actually proven scientifically? Or is this only what parents have observed? Have you thought that in some instances IVIG simply didn't last for genetic/other immune issues? I ask because it seems like the many people jump to the chronic infection piece very quickly and it's a very expensive road to travel. There are cases where IVIG doesn't work in other autoimmune diseases but steroids do. When IVIG is ineffective, there's no such discussion on other forums about " the chronic infection piece." There have been IVIG resistant forms of kawasaki's disease as well or MS, etc. but no discussion on the topic in regards to an ongoing illness. Just curious of people's take on this.

I read a lot here about tackling the underlying infections before IVIG can fully work... or that those who have underlying infections relapse when the IVIG wears off. I was wondering if any of this is actually proven? Could it be that IVIG simply didn't last for genetic/other immune issues? I ask because it seems like the many people jump to the chronic infection piece very quickly. There are cases where IVIG doesn't work in other autoimmune diseases but steroids do. When IVIG is ineffective. There's no such discussion on other forums as to " the chronic infection piece." There have been IVIG resistant forms of kawasaki's disease as well or MS, etc. but no discussion on the topic in regards to an ongoing illness. Just curious of people's take on this.

yes about 4 weeks ago.

Perhaps the methotrexate is calming the inflammatory cascade and therefore suppressing symptoms. If your doctor has experience in prescribing this medication to other patients who have the same methylation problems, that I would not be overly worried.

doxy

Beth wrote it above: She stayed in touch over time, never successfully finding a physician who would stick with long term antibiotics in significant doses. Grant was, however, loaded up on psychotropic medication of course. Marianne's most recent idea was to switch insurance companies to a carrier that would cover IV Ig. At that point, she hoped to avoid the antibiotic fight. She did not have the opportunity to follow through on that idea because Grant was arrested. Thank God police received a tip and averted a disaster.

Grant was, however, loaded up on psychotropic medication of course. <- so then how was PANDAS a factor? Who's to say the medications didn't do everything? I don't think this was really necessary. I think the child mind institute wrote a considerably better follow up article than this. This is a rant, followed by a brief update about one of A LOT of people with PANDAS who are successful. Many people simply haven't gone public.

T Anna, are you sure it is the mycoplasma? I've had IVIG for PANDAS and it worked very well despite an ongoing myco infection.

Any ideas when IVIG will be covered? If the cunningham tests are FDA approved, wouldn't that technically serve as diagnostic criteria? If the phase III clinical trial that swedo is doing proves that IVIG works, will it be mandatory for IVIG to be covered? Any ideas or opinions would be appreciated.

You can be a psychopath and have an illness that affects your brain. The two don't necessarily have to go together.

How many IVIG you do with your PANDAS child? What protocol was used? What was the outcome? Thanks for the input.

I have PANDAS and my tics always get worse for a about a month after steroid treatment, then they disappear sometimes for years. In my case, it was very worth sticking out the "worse before better phase." The way that is was explained was that as the steroids reduce inflammation so drastically, your body needs time to rid itself of the all byproducts and excess cytokines. My neurologist has never mentioned that steroids increase dopamine and they certainly have never affected my cognitive function. The key with steroids is "quick in" " quick out." Longterm, they can have nasty side effects.

thanks for the response

my tics get worse on probiotics. Absolutely.

Hi, Anyone know if pink eye could cause a PANS flare? thanks

500mg

can vitamin c make tics worse?

I would say to let them figure it out on their own. Let them come to you and ask questions when they are ready. Why bring up a conversation topic that is obviously painful, if the main person dealing with the pain doesn't come forward. Simply because you feel as a parents that the child is at a point in their life where they need to understand does not mean they are at the same place as YOU. As far as the discussion actually goes, you the parent should be in the back seat. i would let your child ask the questions and then answer them in a way which you think will build a mature and responsible adult. The child isn't going to steer the conversation in the wrong way, you the adult will so really think about the possible questions that are facing your child. Here are some of the questions that I faced having PANDAS. My questions as a sick child. Can I live a normal life with this? How do I tell people about this? What do I do when I get sick? What treatments do I need to get better and where do I go? How you answer these questions is up to you, but I turned out well with PANDAS and the one thing that my parents always told me was to stick with conventional medicine. If your child is in a crisis, in the end, they will end up in a hospital and you need to know what conventional medicine to ask for otherwise really- getting permanently drugged up in a psych ward could happen. Just be careful.

I think unless you have been vaccinated the titers should be low unless you have been exposed.

I think anyone who says that theres one option and one option only probably isn't correct. I personally have been treated successfully as an adult with IV steroids. The problem with waiting until adult hood is that some of the abnormal behavior can become permanent and difficult to reverse.

Its very common to get worse before better with steroids.

For me, it has always been a quick in- quick out. They are incredibly effective for tics. I receive between 1-5 grams depending on the severity of the flare. It calms it within a week. not lasting issues. The lasting problems come with long term use- not the BOOM 1-5 days hits. At least, according to my neurologist.