Need Opinions...

[qannie47]

My nephew, age 21 just was admitted for the 3rd time for a psychotic break. He had his first one about a year ago which earned him the bi-polar diagnosis. He of course went off his meds about 6 months ago, so if you follow traditional wisdom, this was bound to happen.

 

A week ago, number 2 admission. They pumped him up with psych meds and released him a week later. 24 hours later, psychosis set in, and my brother brought him back.

 

When he described his sons behavior, I was struck by the similiarity with my ds. Manic, anger, crazed look, etc....

 

Of course, with all the latest research about infectious disease and mental illness, I have to wonder.

 

Looking back, my nephew's issues probably go back to age 5.

 

I really want to encourage my brother to insist on some form of a work up that looks for infection.

 

Maybe I am biased because of our own personal experience, do any of you think that infection is important to rule out, given the latest research?

[PowPow]

Maybe not just infection (might get some cross eyed stares from many docs, but how about checking out

 

Aealliance.org.

 

And see if that video (first half of grand round video-under clinical tab at the top ) is familiar enough to your brother

[qannie47]

Powpow, does AE come and go without treatment? I do not know anything about this. Is it possible that he could be dealing with this for years on a smaller scale and then these larger more symptomatic symptoms?

[PowPow]

maybe~ in milder cases- maybe not as encephalitis, but as an autoimmune condition perhaps.

Just an idea. I think, all psychosis has a physical cause, that must be determinable. We just need clinicians willing to work to determine it.

 

I wave my AE flag at every psychosis that crosses my path...

[qannie47]

I agree

[JoyBop]

I think there could certainly be an infectious cause. The hard part is getting a doctor to look for these infections. But unfortunately, they have to focus on getting him stable and are before they can do much there. Are the parents on board with your thinking? Many of the pandas docs do fee going adults even if they are on pediatric docs

[qannie47]

His father thinks out of the box. What I don't understand is why the mental health professionals never ask the question, "What is the CAUSE of the imbalance?".

[JoyBop]

I am hoping that all of the new studies, soon to be published, will change that forever!

I have an adult friend, age 70 who had all of her teeth extracted because of an infection. They were making her falsies. 5 days after surgery he flipped out and ended up in a psych ward. This woman was a rock solid stable person all of her life. She went on antibiotics because her infection came back and she experienced relief only while she was on her 20 course of abx. Now she is a wreck again and no one will listen to her. She knows it was caused by infection, but none of her doctors are familiar with any of this, and no one will give her continued abx. She was like a second mother to me growing up and I am doing all that I can to get her help. I believe its so much harder for adults since most of the studies being performed are specific to the pediatric population.

[JoyBop]

Here are a few articles I emailed to her to give to her doctor in addition to PANDAS related articles

 

http://www.saturdayeveningpost.com/2011/09/12/in-the-magazine/health-in-the-magazine/viral-link-mental-illness.html

 

http://www.newswithviews.com/Howenstine/james16.htm

 

http://wwwnc.cdc.gov/eid/article/9/11/03-0143_article.htm

 

Im still looking for the largest clinical study ever that followed over 1 million patients that had hospitalization for acute infections and ended up mentally ill at a later point in their lives.

[smartyjones]

qannie -- do you know of Dr. Swedo's observational study at NIHM? it was posted here a couple of weeks ago. it sounds like a really good thorough work up. he might be too old - but i'd suggest looking into it. I don't believe it involves any treatment but would give a really good idea of what could be going on.

Edited December 2, 2013 by smartyjones

[MomWithOCDSon]

Powpow --

 

Thanks for that link (aealliance.org)! I've never heard of them before, but they've got links to some great research papers that certainly support the link between autoimmune and brain dysfunction!

 

Many thanks!

[rowingmom]

Sorry, I have to agree with joybop about the probability of an infectious trigger.

 

https://aealliance.org/living-with-ae/treatment/

 

AE Alliance mentions the presence of specific antibodies which are needed for the diagnosis.

 

“Autoimmune encephalitis (AE) is a complex disease that often requires collaboration among multiple medical disciplines for effective diagnosis and treatment. Most AE patients can expect to see a team of doctors that may include neurologists, rheumatologists, psychiatrists, immunologists and others.

 

AE can be caused by different antibodies. Currently there are 13 known antibodies or triggers for AE but only one commercially available diagnostic test. Tests for Anti-NMDA Receptor autoimmune encephalitis is commercially available at Athena Diagnostics or Mayo Clinic. This test should be ordered quickly by your doctor if AE is suspected.

 

However, negative test results for anti-NMDA Antibodies and/or teratoma do not rule out AE.

 

A significant percentage of AE cases are caused by other, still unknown antibodies, or by known antibodies for which a diagnostic test is not yet available.” . . . . .

 

As is the case for bacterial/viral infections. Complete conclusive diagnostic testing for all occurring infections is not possible, and may never be, considering the ability of these organisms to recombine genetic material. Conclusive determination of bacterial/viral involvement is not possible, and neither is conclusive antibody involvement.

 

Just as the diagnosis of autoimmune encephalitis (AE) has evolved over the past several years, so have the treatment options. The following discussion is intended only as an introduction to various treatment options. ONLY your doctor or medical professional can prescribe an appropriate treatment regime.

Early and aggressive treatment of AE leads to the best outcomes. A number of options are available to treat AE. These therapies are broken down into what are considered “first line” and “second line” treatment options. One or more “first line” treatments may be prescribed by your physician as soon as a patient is diagnosed with AE. The four most common “first line” treatments include the following:

• removal of a teratoma (if present) that could be triggering the autoimmune response;
• use of anti-inflammatory drugs (ie. steroids);
• use of plasmapheresis to remove harmful antibodies from blood; and
• treatment with intravenous immunoglobulin (IVIG) which is believed to occupy the binding sites where harmful antibodies attach to brain cells.

Early and aggressive therapy has been shown to prevent progression of the disease.

Patients who do not improve on first line treatments may be given a “second line” treatment. “Second line” treatments are drugs that are intended to suppress the immune system. The three most common “second line” drugs used for AE are:

• Rituximab,
• CellCept , and
• Cytoxan (cyclophosphamide).

I could find no suggestion that this organization considers infection to be responsible for the antibodies producing AE reactions, or that addressing infection is necessary to decrease production of the offending anti-bodies.

 

AE Alliance’s “first line” of therapy appears to be IVIG/PEX, the “second line” being immunosuppressive medications, which comes with its own significant risk of infections and cancer side effects.

 

http://www.ncbi.nlm.nih.gov/pubmed/22139982

 

 

Autoimmune encephalitis (AE) can produce a very wide range of neuro-psychiatric symptoms. A major challenge in diagnosis is that different symptoms may appear at different times and different levels of intensity, so that the disease may mimic many other disorders. Some patients initially present with either neurological or psychiatric symptoms, further complicating diagnosis.

Symptoms associated with AE can include:

• weakness or numbness of part of the body
• loss of balance
• slowed or blurred speech or loss of ability to speak
• ataxia
• involuntary movements
• distorted vision
• cognitive impairment
• memory disturbance
• decreased level of consciousness – to the point of unresponsiveness, catatonia or coma
• seizures – (either self-evident, or smaller seizures that show up on an eeg reading)
• partial or complete loss of appetite for long periods
• food and drink tasting inedible or triggering nausea
• excessive eating without feeling sated
• agitation
• inability to sleep
• loss of inhibition
• rapid, pressured, or involuntary speech
• hallucinations (visual or auditory) and delirium
• paranoid thoughts
• severe anxiety

An otherwise unexplained mixture of the above neuro-psychiatric symptoms may be a clue that the underlying cause is autoimmune encephalitis.

If you suspect autoimmune encephalitis, getting diagnosed and early treatment leads to the best outcomes.

 

DD12 dealt with many symptoms of encephalitis including headache, sensitivity to light/sound, pain at base of the skull, as well as the above items which I have bolded and her other PANS symptoms. She has positive ANA titers as well, indicating autoimmune involvement.

 

They have all resolved with no specific treatment for autoimmune disease or AE.

 

I believe that immune suppressive therapy has its place where quality of life issues are concerned, but only after all significant attempts at addressing infection and supporting the immune system/methylation pathways have failed.

 

I personally don't believe this should be considered as first line treatment.

Edited December 2, 2013 by rowingmom

[T_Anna]

<<I believe that immune suppressive therapy has its place where quality of life issues are concerned, but only after all significant attempts at addressing infection and supporting the immune system/methylation pathways have failed.>>

 

Unfortunately, that seems to be our unhappy category.

 

I understand your reservations regarding CellCept, etc, but after talking to many physicians and others in medical/medicinal world I can no longer afford to ignore it as a real option. Immune suppressants are commonly and successfully used to treat a variety of different illness. Personally, we are rapidly approaching a year since DS has voluntarily left the house and while he has made many improvements he is still completely enslaved by OCD. We hope to start IV steroids this week with LD IVIG (which is the initial treatment they are doing at Duke by Dr. Gallentine & Dr.VanMater from the video). We are hoping this alone will work without CellCept, but if CellCept or the like, is indicated we will try that too.

 

After making teeny tiny advancements with abx, anti-virals, supplements, HD IVIGs(4) & PEX my son needs more help. He has an elevated SED rate, tests + for Hashimtos Encepalopathy and has high ACE levels.

 

When I first saw this video I was really excited. It was before we had PEX, but I already had doubts about how effective PEX would be. The Grand Round validated that a patient can have AE and PEX/IVIG can still fail. I get flack from people all the time about the combination antibiotics and HD anti-virals (not to mention HD IVIGs). I'm sure my first reaction towards CellCept is how these friends view all the medicines DS is currently on, but it's just the current perception, if it works for a lot of severe PANS/PANDAS teens then we will all be pushing our doctors to treat with immune suppressants when other things fail.

 

Wish us luck.

 

T.Anna

DS15

[3bmom]

I definitely think chronic infections need to be ruled out. That said please check info I posted under GMO's in our food and Glyphosates. Our food's DNA, along with huge untested increases of pesticides has drastically changed and is unrecognizable to the immune system. 30% of our improvement was due to diet. I know for sure because our Dr. won't give you antibiotics or antivirals until diet is addressed.