PANDAS/PANS, autoimmune encephalitis or something else?

[Mumofthree]

Girl, 12yo began to behave strangely in July this year, she first started to sleep a lot and then started the symptoms of decreased concentration, disorientation, but the whole thing was not too strong, and the parent attributed it to fatigue from the end of the school year, the end of an exhausting competition season ( practicing skiing, 120 days a year on the snow) and primarily the onset of puberty (19.5.2003.) Although not yet reached puberty when looking at those standard indicators ...

All these symptoms stepped up this summer, when she forgot the dog she took out for a walk, she began to talk completely incoherent, nothing was heard, and completely lost interest in things she really loved before( iPad and phone). Finally with the suggestion of a friend neuropediatrician she was taken to hospital.

They made there all sorts of possible tests and all were negative so they tested also for NMDR and sent it to Barcelona for testing.

Although no findings that would indicate any disease, except for a little bit in the cerebrospinal fluid, with which they made working diagnosis: autoimmune encephalitis. They started to treat initially with antibiotics and Virolex and after that corticosteroid (Medrol ). The situation, primarily after the start of corticosteroid therapy, rapidly improved and 14.8. she was released home. They were told to constantly reduce dose of corticosteroids and she came to 4mg every second day.

On Saturday, 12.9. again began talking incoherently and it was clear that it was a recurrence.

Yesterday morning finally came the long-awaited report from Barcelona(NMDR), ​​which is negative, and therefore the doctors excluded the possibility of an autoimmune disease...

The doctors do not know what that could be but I wanted to ask you if any of you had any similar story They are my good friends and I am following this forum for my DS8.

Is there a possibility that could be PANDAS/PANS or could it be something else....? Thank you!

[sarojane]

It doesn't seem like PANS/PANDAS the hallmark symptoms are OCD (which can be counting, washing, obsessive thoughts), separation anxiety, age regression, emotional liability (think meltdown over seemingly little things), rage, vocal and physical tics. Improvement with antibiotics or antivirals not steroids.

[kim]

Mumofthree,

 

I have to ask. Is there a chance that this girl was in the process of the Gardasil/HPV series.

 

It seems that highly athletic people are more prone to adverse events with that vaccine in particular. Her story sounds a lot like others that I have read in relationship to a bad out come with that vax.

[PowPow]

NMDA is far from the only marker for autoimmune encephalitis.

Please go to aealliance.org for more information.

Additionally, there is another website, California encephalitis society or something, that has much information on encephalitis.

Her positive response to steroids would seem to point to autoimmune causes.

[Brenda4Alek]

I am giving some back history on my high functioning autism spectrum daughter

which was very similar, Looking back when she was in her 'fog' during high school it was the start of pans/pandas. My daughters autimmume is to virues

 

Last year July my daughter ended up at Zale Lipshy UTSouthwestern psy ward for 20 days. She was 20 at the time, first flare was to HSV1(fever blister her dad had at age 19. What she experienced was very similar could not watch TV even the ones we loved and watch together. Now she is on the spectrum so with these kids it is even more difficult because most drs will equate their behavior to autism spectrum. however, I told them that she had never acted like this and prevoiusly responded to Valtrex from her first flare at 19 so positively that her boss at the local grocery store said he couldnt believe after 3 years of her working there they never knew she talked so much and was a great kid. She was doing everything without them telling her she was out of the fog. She was a normal 19 yr old trying to catch up wanting to drive go to jr college etc. Her immunologist actually said he believed some of his autistic patients were pans/pandas sufferers and not autistic, because she hasn\t acted this autistic since she was 3 years old!

I guess i did a regemine of supplement therepy during middle school years but at end high school i said she is what she is.

Thats when ocd got bad, wiping excessively, we had stock in toilet paper we thought just a phase of the spectrum her immune system was starting to attack her

After her great respnse to Valtrex Xmas eve 2013 6 months later got sick and this time had a June July 2014 had high titers to chicken pox whiule on Valtrex

Lumbar puncture nothing, no lyme in CSF.

I told UT Southwestern Zale Lipshy about the PANS they checked for NMDA and was negative, their "autism neurologist guru" said she did not have 'tics' and therefore not Pans/pandas I told him not all pandas kids have tics

He completely discounted the quick onset, OCD,the intrusive thoughts, the anxiety so bad she could not urinate. they diagnosed her with 'psychosis NOS'

 

With this being said we 'got off all psycho drugs (she got c diff from hosp)

and back on antivirals and anti fungals,probiotics etc, back to work 2014 Nov

Only to get flare #3 to her brothers influenza B on Feb 2015 as of today not back.

 

Your friend's child if this continues will undoubtly encounter similar situations at least with her as a typical child this behavior is very abnormal and easy to identify.

 

Her parents will have to find immunulogists receptive to these type of reactions and for goodness sake NO MORE IMMUNIZATIONS this would be hurt to injury. If it is autoimmune likely immunizations got her there. Our immunologist treated a typical 8 year gymnist after she had to flu mist and she got PANs and had to have several IVIG/plasma exchange. Still after over a year not normal yet but managed

 

I even gave an oral immune booster in beginninG...WRONG... AS her immune system attacked her brain even more.

We then did IVIG in April no response.

Immunologist said go to lyme doctor. It is hurry up and wait to get in to see specialists, ER does nothing but say follow up with ...your doctor, right not her anger is the problem oppositional and defiant.

I lost my job in January because my employer knew Iwas out almost a month last year so now 9 months later she is no better. Antipsychotics can do more harm as its the inflammation in the brain that causes the behavior.

Our insurance Cigna Greatwest does not cover IVIG or the lyme doctor we go to

and the new psychiatrist doesnt take insurance

The old psychiatrist doesn't believe in Pans/pandas

Its a long road ahead

 

I also want to mention that any parent go to the internet and watch

BOUGHTMOVIE.COM you willhave to enter your email but you watch for free this is a very well put together 1.5 hour movie that explains whats happening to our kids

sorry for such a long post .

 

Our family does not have a stockpile of money and now down one income its very frustrating. When you go conventional medicine they say psychosis and drug and insurance covers. If you go alternative they find the root cause but insurance doesn't cover,

Supplements, probiotics,metal detox, (mercury aluminum in vaccines) cost a lot

 

I pray for all this generation of kids. It seems RH negative kids are more sensitive than RH positive

[Brenda4Alek]

One more thing for Pandas (strep) yes antibiotics

for viruses Pans antivirals

Both cause inflammation in the basal ganglia of the brain:

for inflammation yes steroids, prednisone etc

thats why for your friends child steroids worked

 

natural anti inflammatories n acytel cystein(sp) tumeric or any NSAID

we tried 5 days of prednisone on my daughter just made more agressive

 

Inflammation is the cause of the behavior, rid the cootie and all is good but the inflammation has to be controlled during the process

IVIG is one that is used in my daughters case did not work because now the lyme doctor says shes has lyme and we are waiting on rheumatoid arthiritis test with one autoimmune disease may follow others, lupus, parkinson, RA,

[rowingmom]

If you have access to a lyme doctor, please have him test for the common coinfections as well: Bartonella, babesia, ehrlichia, anaplasma, mycoplasma etc.

 

Lyme does not have to be present for the coinfections to exist. Several of these, but especially bartonella and babesia (as well as lyme itself), can be immune suppressive.

 

I think that if you have had good results with antivirals, you may want to further investigate those types of infections. I also think you are spot on about inflammation being the cause of the behaviour. The cause of the inflammation must be found and resolved.

 

Stephen Buhner has a good book on Herbal Antivirals - it may be worth a read.