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My 14yo has significant memory problems.

She forgets important information she has been told. She says things and sends emails,.both of which she will forget within a few hours. This has been an issue since she slowly recovered from her most severe exacerbations, which lasted months.

I am not sure this part and parcel of PANDAS, encephalitis (which fits her presentation, frankly), or some other issue.

She feels it has ben worsening, and I agree.

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Not recently, she actually had lyme at her onset, she not technically, "pandas", but a PANS kid. She was CDC pos lyme, treated by an LLMD. We could not retest now, if I wanted to, due to complete refusal of medical care.

I wil let her know this about lyme. Maybe s she wil some how comply?

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If you Wiki CaMKII, and you can wade thru the eye-glazing information, toward the bottom of the page you see a discussion of CaMK and memory. It plays a role in spatial learning and in memory consolidation. I often explain to teachers that it's like the information gets into the brain but then someone tips over the card catalog and DS can't easily find the information again. It takes a lot of hunting and sorting to access what the rest of us can just quickly lay our hands on.

 

This is really evident on speed tests. In January, when DS was really well, he could do a series of multiplication problems in 90 seconds. A month later, he could only do half as many problems in 2 minutes. He also seems to "lose" knowledge, where he could once rattle off 6x8=48, he'll then stare at me with no clue what the answer is and I may just as well be asking him what 17,201x2,390 is. It can take months to fully recover and even then, there's still lost ground to make up and re-learn/re-file whatever material was presented during the bad period.

 

However, we've also see brain fog from lyme issues. The lyme seems to effect language as well as math, where he'll search for words and have "senior moments".

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As far as long term damage, I have/had the same fears. It's been a long battle here and since it's assaulted his brain so repeatedly for so long, I was starting to wrap my head around the idea that some things could be permanent. But in the 5+ month remission where he got really healthy, I saw a ton of improvement in areas I had given up as lost. I think the key is keeping them healthy long enough - like a year+. So far, that eludes us - the past two months have brought back to back strep/cold/cold. But I know it can come back. I think of it as weight gain rather than permanent brain damage. When you pack on 30 pounds, it feels daunting to think of getting back to your old weight, but with time, it can happen. JMO.

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pow pow-

 

My dd suffered with this very noticeably during her initial episode. She was 5 at the time.

 

During episode- she could not recite the days of the week (I spent two months working on that with her), she could not write from 1 to 100 (the teens were backward, and past that it was somwhat of a jumble), and she could not be given multi step directions (go get dressed, brush your teeth, and find your book- she would do one- then look lost and say- did you want me to do something else?).

 

The DAY she came home from the hospital for having PEX- this all was gone! She recited the alphabet with no prompting, wrote from 1 to 100 PERFECTLY (when before 50 of those numbers would be wrong) and quickly, and read a stack of six books to my mom (she had been resistant to reading).

 

So- I KNOW this kind of thing can come from pandas.

 

She has not had major issues with this, since, thankfully!

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I don't know your feelings about Lyme (not good? I don't feel so great about it, either, lol.)

If you don't mind sharing, selfishly for me, being CDC positive for Lyme, then going to LLMD, how long did it take to treat? When did you know when you were done?

 

Some supplements for my dd that help in this area, for lack of better words, make her seem more 'smart' and I notice clearer, more detailed thinking and talking, are

Phosphatidylserine (expensive, but total keeper for us) and B-12.

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I could write a book & you can PM me for more if you want.

We went through a year+ of massive supplements,abx, you name it. 4months plus of picc line(iv) abx. Yes, my daughter was functioning at her best under this doc's.care.

We knew were done when my daughter refused to go back. She had to be carried everywhere.kicking, screaming completely out of herr mind. I an not exaggerating a bit.

So really, we may not have been "done".

The llmd was.great. If my daughter agreed to it, I would take herback there.

After the crash during lyme tx, the best relief we have gotten is from.steroids and pex. That is seemingly a sign that we are at least mostly past the infectious part and on to the autoimmune part. Unless, of course, this IS all autoimmune and the lyme was coincidental. Correlation does not equal causation. I am firm believer in that.

Excuse the typos I am on my phone!

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PowPow --

 

Short-term memory loss was part ofmy DS's PANDAS symptomology; he actually commented once that he felt like he was becoming like his grandpa (who has Alzheimer's)! This became so bad for him at points that simple, everyday tasks became problematic because he would literally forget what he was doing, or which step of the task he'd completed versus which one he was preparing to move on to, while in the midst of doing it! Like showering for instance: "I can't remember if I washed my legs!" We found that supplementing with taurine helped some.

 

Now, outside (beyond? -_- ) the worst exacerbation of his life, he's in awe when his dad or I remind him of an incident he had during the worst of things. Last night, for instance, we went to a restaurant for dinner that DS picked. It was at this same restaurant, though, that about 2 years ago he had such a huge meltdown before we'd even ordered dinner that we were forced to leave. He doesn't remember any of that, or a number of other events that loom large in DH and my memories in a bad, sad way. Maybe it's selective amnesia, and maybe it's just emblematic of the fact that he really wasn't "in his right mind" in those days, so he can't recall what "he" didn't actually experience. :blink:

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My daughter has no memory of several months at all, when she was at.her worst. She does not even remember good things, like meeting her new baby sibling, who is now a toddler.

Actually both girls have little memory of those horrible times. I mentioned some in therapy the other day, and my younger daughter did not even know she did certain things. Big things, you would not forget.

I think their brains are protecting them from the bad memories.

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My older daughter forget almost all of the bad things that happened in exacerbation- my younger does not. I tend to think it is the psychology of the brain protecting themself from a memory that is too painful. We do sometimes share stories with her- I don't want it to become a totally forgotten secret -

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