Memory problems

[butterflymom]

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Edited February 2, 2016 by tampicc

[Tamistwins]

Hi my son will ask me something and then say what did you say? I don't think its a memory problem...i think it's more of an ocd ritual he has. He wants me to repeat things to him.

[tpotter]

If it's really a memory problem, and you don't think it's OCD, you might want to consult with a ped. neurologist. It might be seizures, and I would want it ruled out if it was my child.

 

One of my kids has seizure activity (although the neurologist isn't certain if it's related to PANDAS or truly seizures,) and I've heard of others on the forum with similar issues. My son would complain of "blackouts", and that may be what's happening to your son. For instance, he would be sitting in class, and the last thing he remembered was that the blackboard was empty. All of a sudden it was full of writing, and he remembered nothing in between.

[Tamistwins]

Hi my son will ask me something and then say what did you say? I don't think its a memory problem...i think it's more of an ocd ritual he has. He wants me to repeat things to him.

[Tamistwins]

Oops didn't mean to post again

[MomWithOCDSon]

Having lived with it for many years, I would categorize this as an OCD ritual, also. It sounds akin to reassurance to me; he sort of knows the routine and is pretty sure he knows what's up and where he's headed, but he wants you to make it 100% clear so he can be "certain."

[emmalily]

I actually have had some memory problems while I was really ill. It was mostly a space-case situation where, for example, I would get up, walk very purposefully up the stairs, turn into my bedroom and once there say to myself, "Why did I come up here?" I definitely I had a reason for doing so but darn if I could remember it. It happened to so frequently that it was clearly something besides distractedness. Maybe seizure activity or maybe my brain was just overworked and preoccupied with other problems. Either way it resolves itself in the interim times of feeling good.

[LaraM]

I am not sure if it is memory or OCD, but I tend to think it can be either one depending on the exacerbation. When my DS5 first presented, he would cry and cry and ask me if he would be able to remember all the "bad" things he did when he died and went to Heaven (to me OCD). Now, when I ask him to do things, he spaces out totally and says he doesn't hear me or doesn't remember what I asked. In this case, I really think he can't remember or his mind is elsewhere when I ask him. Also, we do journaling every day. If he is symptomatic and I talk him through how to spell things, he cannot remember how to form certain letters. When he isn't exacerbating or when he is just mildly symptomatic, letter recognition and how to write the letters isn't an issue. That to me is definitely a memory issue related to PANDAS, not OCD.

 

Now DS7, who is quite bright for his age, sometimes cannot remember simple sight words he has known since he was 3 1/2 - 4 years old. That is definitely a memory issue, not OCD.

 

Hang in there! I am terribly sorry you are going through this too.

[smartyjones]

does anyone who sees one of the neurologists -- dr t or dr l -- have insights on this -- as far as memory or seizure activity -- pandas related?

 

during exacerbation, my son couldn't keep the days of the week right and in order. previously, he absolutely knew them. for him, i don't think it was ocd reassurance, it was a disconnect.

 

he does often and repeatedly ask 'what are we doing today?' in the am. that, i think, is more of an ocd need to know issue.

 

i myself get migraines with aura. recently, one night after a headache, my husband was speaking to me -- i could hear him as far as volume, but i kept asking him 'what?'. it was bizarre, i could hear him but couldnt' seem to process what he was saying correctly. my son does have times when he asks 'what?' repeatedly and inappropriately. i wondered if that is something similar that is happening with him.

 

 

tpotter -- how did you determine the seizure activity? EEG?

[Suzan]

This is my dd8. She will ask what day is it? Is it a school day? Have we had lunch yet? Her issues seem to go along with the time of day and what day it is. But she will also ask the same question having forgotten she just asked it and she won't remember much of anything it feels like at times.

 

She does have seizures and it could be from that but she also has lyme and I know poor memory is also a sign of lyme. She just started her seizure meds recently since her seizures came back but I don't think it got much better while her seizures were gone. I'll have to see once she starts her lyme treatment if it gets better.

 

Susan

[Suzan]

i myself get migraines with aura. recently, one night after a headache, my husband was speaking to me -- i could hear him as far as volume, but i kept asking him 'what?'. it was bizarre, i could hear him but couldnt' seem to process what he was saying correctly. my son does have times when he asks 'what?' repeatedly and inappropriately. i wondered if that is something similar that is happening with him.

 

 

This happens at our house too, not the headaches but the inability to understand the words. This can be a symptom of lyme as well. It has improved for me after only a month (although I suspect it will come and go for a while, who knows?!)

 

Susan

[kengela]

My dd 6 had major memory problems-forgetting words to songs and nursery rhymes that shed known for years,forgetting what things were called,ect... She also had the "what?" thing-way before her major onset. We had her ears checked I thought she was having trouble hearing. Until now I always thought back on that as a tic.My dd hasnt been dx with Pandas but now I have 2 more symptoms to make me believe thats what this is. Angela

[MomWithOCDSon]

i myself get migraines with aura. recently, one night after a headache, my husband was speaking to me -- i could hear him as far as volume, but i kept asking him 'what?'. it was bizarre, i could hear him but couldnt' seem to process what he was saying correctly. my son does have times when he asks 'what?' repeatedly and inappropriately. i wondered if that is something similar that is happening with him.

 

This is really interesting to me; maybe the study of migraines can shed more light on what's happening inside our kids' brains due to inflammation?

 

I had a similar experience, Smarty, and I'd never put it together in any parallel with what my DS does through during exacerbation, but there are definitely some similarities. Many years ago I had what they initially termed a transient ischemic attack (TIA) and later revised to an "atypical migraine": no pain, but I lost use of my left arm for about 20 minutes, and my mouth would not work. I could hear, I could think, but I couldn't speak. It only happened that one time, never before, and never since, and it's been almost 10 years now.

 

Sometimes DS will report that he just can't "think straight," can't sort out thoughts and ideas . . . it's as though his brain is literally flooded and none of the levees or drains are operational. Sometimes he will report also being physically riveted in place; he claims he feels he can't move. But then, 15 or 20 minutes later, he'll be fine again, and he'll sit down and hustle through some challenging math homework like it's no big deal.

 

PANDAS/anxiety and migraines have something in common, maybe? Aren't migraines like a temporary "swelling" or surging of blood vessels in the brain?

[NYCMom]

Have to chime in here, both about memory loss and migraines.

 

My mom is a migraine sufferer and had a similar attack one year - She had a complete memory wipe one day. I got a call from her sobbing about not remembering anything, day of the week, nothing. Though she knew me and had dialed my telephone number. I had a broken foot at the time and when I showed up at her house on crutches she freaked out because she didn't remember what had happened to me even though she had taken me to the hospital for my surgery. Over the next couple of hours we accompanied her on her errands - she was very insistant on keeping some appointments that she did remember - but every time we mentioned her memory loss, she didn't even remember that! It was that one time, just like yours and has never happened again. Docs said it was not uncommon, this sudden and temporary senility. I have never solved the mystery and I have to say it was as close to a panic attack as I've ever come, until PANDAS of course.

 

As far as PANDAS, my ds8 had similar symptoms to what you all mention, though milder as he is a mild case in general. He used to ask 'what?' a lot, you could tell he was having processing issues. He also gets severe headaches in an exacerbation, but they disappear quickly.

[butterflymom]

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Edited February 3, 2016 by tampicc