Autoimmune Encephalitis

[tu4four]

Hello, mamas (and dads, and grandparents, etc!).  I haven't posted anything for a long time, possibly because I haven't seen any new hope, any doctor that is willing to help,  and our funds to travel to our doc have run out.  Our most profoundly affected child (15) has continued to be super irritable and moody. She has been officially diagnosed with bipolar, asperger's (asd) conduct disorder at best, borderline personality disorder at worst.  She has been out of the psychiatric hospital for 2 days, and as if that wasn't enough, my ds11 has now been in a flare for at least 2 months with 4 weeks on  Zithro.  This time I am not seeing him come back to us, even on zithro.  Poor baby girl, dd7, is the youngest, who at this point only deals with phobias, "monsters" but no anger issues.  

So here is my question....we have an appt for my dd15 with a rheumatologist/neuro who is on the autoimmune alliance's website.  He has worked with this a lot, apparently.  I know these kiddos are dealing with brain inflammation.  Dd15 had a lumbar puncture with a high opening pressure, but neuro didn't bother to test for any antibodies even though I asked him to.    Dd15 and both others have had high thyroid antibodies, and we have a list as long as my arm of relatives with autoimmune issues, including one great aunt who had a very large goiter (makes me think Hashimoto's thyroiditis).  This great aunt lived with her mother her entire life and was considered "not right" by family.  My mom thought that she was just what they called "mentally retarded" back then, which could have been a lot of things.  

Anyway, I am looking for any other ideas on what to stress with the doctor so that we don't miss the mark with this one.  This has got to be the answer.  

Since dd15 has been home from the hospital, she has been sleeping a lot.  She was sleeping a lot before she went in, but we thought it was because of the antidepressant.  She has been off of that for a while now and is still very fatigued.  

She went into the hospital because of a manic episode (I think brought on by the antidepressant).  During that episode, she became obsessed with the phone and contacting several people that she didn't know.  She took my phone before the password came on.  When I tried to take it back (I couldn't let her continue to do what she was doing), she became very strong and relentless.  When my husband walked in the door, she had me trapped by the hair, had kicked her brother in the groin and had kicked her little sister against the wall.  

Today, my son, who has lost his beautiful laugh, has had behavior very similar to dd15.  He has screamed at me and yelled and verbally threatened just like her.  Last night, when he was fairly calm, he lied about things that didn't even benefit him to lie about.  This has been going on for some time.  

They both have had high tests for hhv6, etc.  I know this is all due to inflammation.  I just don't want to miss anything that will clue the dr in.

Any other thoughts?

 

thanks

[bobh]

Your story is heartbreaking - I am so sorry for all of the stress you are under.

I assume that you are posting here because of a previous diagnosis or suspicion of PANDAS or PANS.  Just in case you haven't seen the workup recommended at pandas physicians network, scroll down to section "III Workup" at this link: https://www.pandasppn.org/seeingyourfirstchild/ .  This is not a really long list (like for example, Dr. T's), but a very basic one, and one that a doctor not expert in PANDAS/PANS could respect on account of the board of expert doctors behind this website.  At any rate, beyond the basic checks for strep, there is a recommendation to check for heavy metals.  That part is worded in a funny way - it's called poisoning, but it's also called a non-infectious trigger.  At any rate, I know of a child that had excess mercury in her blood (and hair), and her PANS symptoms did actually improve greatly when they got the mercury level down.  It really does seem to act like a trigger.  I have heard aluminum as another that possible trigger that you could consider requesting to be checked.

Have you ever chased yeast as a trigger?

For your son, though zith is good, you might consider getting a different abx, as recommended (after 14 days if no improvement) on the second page of this link: https://www.pandasppn.org/wp-content/uploads/PANDAS_Flow_Chart.pdf .

[tu4four]

Thank you for your response.  i read back over my letter, and I know it sounds....horrible .  It is, but I guess I have periods where I can hold my head above water and dog-paddle and periods where I feel the shore-line is so close, but I just can't touch it.  

Yes, my dd15 and ds11 have both been diagnosed with pandas.  They have both been given abx, and IVIG was recommended.  But, you know....insurance.  We have pursued yeast; we did a detox diet and nystatin/diflucan and saw some improvement.  We need to do that again. 

Both my dd15 and ds11 have several viral issues that we have treated for.   Which comes first--immune problems or viruses?  Hhv6, coxsackie, mycoplasma, ebv.  

Took my dd15 to the optometrist yesterday and found high intraocular pressure in one eye--which could be indicative of encephalitis.  After her high opening pressure on lumbar puncture, high thyroid antibodies, I feel like this is significant enough for a doctor who regularly treats autoimmune encephalitis to do something.   So I feel like we are so close I can taste it.  

We have stopped giving my son his abx as he had shown no improvement this time in a month.  As I am typing this, we are recovering from a huge explosion that began to cool 15-20 minutes after I gave him 2 Advil.  

Our back-up plan right now is...we removed the anti-depressant and the stimulant (add med) while keeping her abilify and Lamictal.  We are starting aba therapy in two weeks and a social skills group.  

So, we're praying.  

 

 

[tu4four]

PS. I often think viral illnesses trigger him. So I don't have a good plan for treating that.  Have used virographis, oregano capsules, olive leaf extract and an oil....