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We've been doing okay for a while now such that DS15 getting good grades in his classes. Did well spring of freshman year.

 

Unfortunately we entered a huge flare this past weekend. Panic, anxiety, OCD - alot of which stems now from not wanting to enter into another flare (PTSD). It's scary and he freaks out when he knows he's going into one. Starts with "thoughts are back." Progresses to 3-4 days of insomnia issues which then progress to days of better sleep but continued more mild OCD with steep cognitive decline.

 

Our biggest problem is and has always been his memory deficit after the initial insult. It lasts a good solid 7 days. We are now on lamictal low dose but that has not helped this issue. We do zinc and anti-inflammatories - doesn't help too much. I tried taurine as suggested by Nancy on this board but that didn't seem to agree.

 

Last week he got perfect scores on honors chem and pre-cal tests and wrote the best essay in english class as stated by his teacher. This week - he can't do double digit multiplication. I've spent the last several hours going over chemistry - simple concepts - atomic number - protons and neutrons--. He cannot hold on to any information for more than 5 minutes.

 

I know he will "get his brain back," but I do not understand how he is supposed to go to high school when he misses his brain for two weeks at a time. I can't coach him through. It's a deficit.

 

Dr. L is recommending a month of antibiotics and then IVIG despite no positive strep.

 

This child has never had an MRI an EEG or any other work up. It's all psych and PANDAS specialist driven. I guess I just need some words of encouragement AGAIN.

 

To be honest - it seems like a two week seizure every time. Is that what everyone else sees?

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So sorry you guys are dealing with this!

 

I wish I had more ideas for you, but it sounds as though you've tried the things that helped us (lamictal, zinc, taurine). And I have to say that, no, we didn't experience this pattern. The short-term memory deficit was profound at the height of his illness, but once he began to heal, that began to mend itself alongside all the other behavioral/psych issues. And even though he would regress occasionally in terms of OCD behaviors and anxiety, the memory issue really never resurfaced in any substantive way.

 

I will attest, however, that when anxiety is very high, short-term memory during that anxiety period, is nearly entirely absent. But, in our case, it seems to be only that memory is entirely supplanted by anxiety in the brain . . . that he doesn't "record" anything because all of those synapses are dedicated to the anxiety itself. But once that anxious moment or period is past, memory function is instantaneously back.

 

But your DS is not excessively "ramped up" in terms of overall anxiety? He can manage himself moderately well, but the memory issues persist?

 

The only other thing I can think of is to maybe see if something like memantine might help?

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I can't answer your question, unfortunately. I would wonder if it's Working Memory (as measured on, say, the WISC) that's impacted or some other form of memory or something else entirely.

 

We are doing IVIg and have seen some improvement in organization/attention. But, we haven't gotten out of our initial flare yet so I can't really compare to your experience.

 

The other day, I read an article in which Dr. Swedo indicated that PANDAS is a type of autoimmune encephalitis and I was surprised to see that put so bluntly. I wonder when the small world of autoimmune encephalitis docs and the world of PANDAS docs will...meet?

 

(As another aside, just from reading anecdotes, it seems as though a higher-than-expected proportion of PANS/PANDAS kids are especially bright and/or 2e, prior to onset. Has anyone else noticed that?)

Edited by jan251
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Thanks for your replies. The memory issue persists despite decreasing more mild levels anxiety - however he's certainly still anxious and filled with extraneous thoughts during this time. So it could very well still be that the anxiety is taking the place of a working brain. But its more long standing. It does seem like a two week seizure with a aura - event - post ictal type pattern.

 

I do recall in 7th grade when he was in a particularly bad place that i asked him to draw a clock like the Brain of Fire woman. My son could draw a clock but he drew bicycle spokes all over the face and did not draw any hands. I later learned that this is seen in dementia. So yes, there is definitely an inflammatory process at play.

 

At this point its hard to tweeze apart what comes first. His anxiety is largely due to feeling like he's indeed losing his mind (again). Which brings on panic. His compulsions spiral out of control. His view is opened up and he has floods of memories of past flares. His perception is both MORE finely tuned to the world around him yet at the same time negative ("I cant make eye contact. I don't have social skills...") Typically he doesn't really care. I have yet to find a therapist that can assist us in dealing with such a tangled mess.

 

I am uncertain about which route to take next. I am not certain that IVIG will do much more than make this traumatic experience worse. If we do this, we will likely need to drop out of school which we will probably have to do anyway given the increasing severity.

 

Thanks for your ears!

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Once my DS reached full-on teenage-hood, we had to find some new therapy tactics for him, as well, as he could pretty much find the hole in any argument within a CBT or even ERP exercise.

 

We ultimately settled on ACT -- Acceptance and Commitment Therapy -- for the last 1.5 years or so of his therapy. It really did seem to suit his way of thinking/reasoning and helped him to move past some of the negative self-assessment tendencies.

 

https://contextualscience.org/act

 

All the best!

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Whether to do IVIg is such an individual decision. For us, the only angle I've worried about is lingering infection (especially lyme&co), which is the only scenario I am aware of for IVIg making things worse. Fortunately, we are not seeing anything worse at this point with IVIg in spite of known infections (including lyme, which had been treated beforehand to no apparent avail), though we have ramped up IVig dose quite slowly. No side effects for ds. I have no plan to take our ds out of school as he's actually doing better with school at this point, with better organization. He had another infusion yesterday and might come with us to a party this afternoon (I'm sure his OCD will be on full display, but that's another story).

 

I see the concerns over the high school transcript. With our ds in 8th, this is our last year before everything counts and I so hope we can get to a better place before high school starts; the clock is always ticking.

 

Speaking of clocks, is AE a possible direction to explore? I wonder. I recently discovered that there is a doc (or two) at our local research university who is supposedly interested in AE. Aside from reading Brain on Fire, I don't know much about it or what the usual treatments might be, as if there's such a thing as "usual."

 

I keep going back to the big picture, infection and/or inflammation driving anxiety. My goal I guess is to address those and then add in whatever supplements or meds might take the edge off in the meantime. For another one of my kids who is sort of pandas-ish lately - meaning increasing anxiety and a little tiny bit of ocd, that I wouldn't even notice if it weren't for his brother - I added a few supplements, a little bit of B6 and methionine in the morning, Walsh-like, and a tiny pinch of ashwaghanda in the evening for sleep and general anxiety - I haven't tried to give it to him in the day yet. These things seem to take the edge off. Zinc seems to set my pandas kid off though I don't know why as he ought to need it.

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I can't answer your question, unfortunately. I would wonder if it's Working Memory (as measured on, say, the WISC) that's impacted or some other form of memory or something else entirely.

 

We are doing IVIg and have seen some improvement in organization/attention. But, we haven't gotten out of our initial flare yet so I can't really compare to your experience.

 

The other day, I read an article in which Dr. Swedo indicated that PANDAS is a type of autoimmune encephalitis and I was surprised to see that put so bluntly. I wonder when the small world of autoimmune encephalitis docs and the world of PANDAS docs will...meet?

 

(As another aside, just from reading anecdotes, it seems as though a higher-than-expected proportion of PANS/PANDAS kids are especially bright and/or 2e, prior to onset. Has anyone else noticed that?)

Interestingly, the new PANDAS clinic in Arizona is actually called "Postinfectious Autoimmune Encephalopathy (PAE)" clinic. Link is here. We have filled out paperwork at this clinic as it is the closest comprehensive clinic to San Diego. http://peds.arizona.edu/steele/cpae

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