Cognitive Fog

[MomWithOCDSon]

Many of us here have noted a "cognitive fog" in our children which, especially at school age, can be one of the most debilitating symptoms. My DS13 has had it off and on for the last year and, without any prompting from me, has himself termed it "fogginess" or "cloudiness" with his thinking when it occurs.

 

At a therapy session with the ERP therapist a few weeks back, DS mentioned the foginess and how it was interfering with his remembering some instructions, task sequences, etc. The therapist nodded and listened, and I just had to pipe in at that point. I asked him, Is this "cognitive fog" something you see much of in OCD kids? Or is it unusual? (This same therapist has witnessed a few other behaviors in DS that he acknowledges are not common in his experience with OCD sufferers, and he's always been upfront when something "sticks out.")

 

His answer was that it isn't very common to OCD, but that it is common to general anxiety. Being as he is on staff with the Anxiety & Agoraphobia Treatment Center, I figure he should know anxiety when he sees it! Anyway, he went on to explain that when a person is feeling full-on anxiety, it tends to take over, and thinking becomes secondary to the brain's "fight or flight" impulses. So the fog sets in.

 

Looking back on DS's moments of "fog," I do believe I see just a general sense of anxiety at play there; he's not undertaking rituals or melting down emotionally, he's just having trouble sorting his thoughts because what he's trying to think through (generally school, decisions, choices)is anxiety producing.

 

I'd really like to hear about your experiences with this "cognitive fog." Maybe we can find some commonality and some effective ways of banishing it, once and for all!

 

Thanks!

[EmersonAilidh]

I. HATE. BRAINFOG. MORE. THAN. ANY. OTHER. SYMPTOM.

 

Holy God almighty, "cognitive fog" is the one part of P.A.N.D.A.S. (or Lyme or WHATEVER ELSE, who knows at this point..) that has remained strong since it first came about. For me, it starts when I wake up & it's worse the more I sleep. Convenient how that coincides with me sleeping twelve+ hours a night, isn't it? My friends have taken to calling me Mrs. Self-Destruct after a Nine Inch Nails song as of late.

ANYWAY. This is one of the few posts on this forum where I am finding it difficult to refrain from swearing. Explaining the frustration of brainfog brings more than a few expletives to mind. My brainfog hit me like a freight train this morning. We have A & B days (only four classes a day.. Ninety minutes a day), & Advanced Chemistry was my first class. For me, although I've never heard anyone else talk about it so it very well may be different for everyone, brainfog makes it feel like everyone is speaking an entirely different language. Comprehending anything being said to me is practically impossible when I get like this. There honestly is just no explaining it. It was the NUMBER ONE SYMPTOM I told my Mom that I was dreading this school year, & this morning I was reminded why. I left Chemistry class realizing that.. oh my God. I had absolutely no Earthly idea what the teacher had been talking about the whole time. It's so hard to remember where to go in school. It feels like an all-encompassing headache that is positively disorienting. In all honesty, it's beyond explanation. I just don't even know how I would begin to describe it to someone who had never experienced it. Emotions are haywire, simple tasks like walking become a chore, & conversation is all but out of the question.

 

That's MY experience with brainfog. If you can't tell, I think that it upsets me more than anything else with this stupid disease. It's the absolute only thing that actually makes me feel disabled. If I knew that bringing my explosive tics back would rid me of the brainfog, I would honestly be stuck.

[matis_mom]

I. HATE. BRAINFOG. MORE. THAN. ANY. OTHER. SYMPTOM.

 

Holy God almighty, "cognitive fog" is the one part of P.A.N.D.A.S. (or Lyme or WHATEVER ELSE, who knows at this point..) that has remained strong since it first came about. For me, it starts when I wake up & it's worse the more I sleep. Convenient how that coincides with me sleeping twelve+ hours a night, isn't it? My friends have taken to calling me Mrs. Self-Destruct after a Nine Inch Nails song as of late.

ANYWAY. This is one of the few posts on this forum where I am finding it difficult to refrain from swearing. Explaining the frustration of brainfog brings more than a few expletives to mind. My brainfog hit me like a freight train this morning. We have A & B days (only four classes a day.. Ninety minutes a day), & Advanced Chemistry was my first class. For me, although I've never heard anyone else talk about it so it very well may be different for everyone, brainfog makes it feel like everyone is speaking an entirely different language. Comprehending anything being said to me is practically impossible when I get like this. There honestly is just no explaining it. It was the NUMBER ONE SYMPTOM I told my Mom that I was dreading this school year, & this morning I was reminded why. I left Chemistry class realizing that.. oh my God. I had absolutely no Earthly idea what the teacher had been talking about the whole time. It's so hard to remember where to go in school. It feels like an all-encompassing headache that is positively disorienting. In all honesty, it's beyond explanation. I just don't even know how I would begin to describe it to someone who had never experienced it. Emotions are haywire, simple tasks like walking become a chore, & conversation is all but out of the question.

 

That's MY experience with brainfog. If you can't tell, I think that it upsets me more than anything else with this stupid disease. It's the absolute only thing that actually makes me feel disabled. If I knew that bringing my explosive tics back would rid me of the brainfog, I would honestly be stuck.

Thanks for sharing how it feels from the PANDAS point of view!

 

I remember so clearly my son just sitting there in front of his Math and tears coming down his cheeks...so sad He just couldn't think. He wanted to, but the brain was just not responding. Homeschooling has been such a blessing in that sense. We can just change gears, go take a walk, or call it a day. It seems it just comes and goes, and it doesn't last that long (as in, it's not completely there 100% of the time for days on end).

 

Another interesting thing we've been noticing with ds is that as compulsions decrease, obsessions become stronger. So it's like the battle is all in his head. We can't see tics or repetitive behaviors, but you can tell there is a battle going on "up there" It just makes me so sad for him to have to be dealing with this #@&^ at his age! He is so bright, imagine the things he could do if he didn't waste all that mental energy on "fog".

 

If it is anxiety related, which I can totally see (i.e, he can't concentrate on his Math because he is worrying the pencil, which fell on the floor, might be contaminated), I think relaxation techniques (for us, "breathing counts" work pretty well) would help?

 

Interested in what others have to say, I think even when we keep fighting and hoping for 100% recovery, we have to make the best of it until that glorious day!

[matis_mom]

It's the worst symptom for my DS15. In the past, we made headway with two things. I hope they still work as we're going to start them both up again. The first was a vitamin called Basic Preventive 3 by AMNI or Douglas labs. When my son took them before he was like night and day. They take a similar one on the Tourette forum. It is high powered. His thinking really cleared up. You are suppose to take 6 a day.

 

The other thing we did was get him Occupational Therapy using the "Brain Gym" program. That helped the right brain work with the left brain. I'm thinking, of adding non drowsiness Claritin too. I think many here suffer from allergies or immune haywire and often it's histamine coming in to the mix too. Can't hurt....

 

Can't wait to hear more replies on this topic.

 

Nancy

Oh man! That supplement is definitely worth a try!

 

And I had been introduced to Brain Gym but never really gave it a good try, I'll look into it.

As for allergies, he does not seem to have any enviromental ones (except for roaches, and I just saw one yesterday in our school room!), but we are waiting for results on food allergies. Maybe that's way there are days that are so completely off?

[EmersonAilidh]

Thanks for sharing how it feels from the PANDAS point of view!

 

I remember so clearly my son just sitting there in front of his Math and tears coming down his cheeks...so sad He just couldn't think. He wanted to, but the brain was just not responding. Homeschooling has been such a blessing in that sense. We can just change gears, go take a walk, or call it a day. It seems it just comes and goes, and it doesn't last that long (as in, it's not completely there 100% of the time for days on end).

 

Another interesting thing we've been noticing with ds is that as compulsions decrease, obsessions become stronger. So it's like the battle is all in his head. We can't see tics or repetitive behaviors, but you can tell there is a battle going on "up there" It just makes me so sad for him to have to be dealing with this #@&^ at his age! He is so bright, imagine the things he could do if he didn't waste all that mental energy on "fog".

 

If it is anxiety related, which I can totally see (i.e, he can't concentrate on his Math because he is worrying the pencil, which fell on the floor, might be contaminated), I think relaxation techniques (for us, "breathing counts" work pretty well) would help?

 

Interested in what others have to say, I think even when we keep fighting and hoping for 100% recovery, we have to make the best of it until that glorious day!

 

I have been considering homeschooling for years now but I just don't think that I can do it. I'm completely open about my disease, but one of the points that I have always stressed is that I will NOT let it take anything away from me. This might be a little "angry at the world", but oh well. When I woke up totally fogged this morning I dragged my sleepya## to Chemistry even though I wanted to do nothing more than lay in bed & be miserable. Why? Because that teacher was not about to feel the satisfaction of marking me absent. I refuse to be "just another kid" with some rare condition to the faculty. I KNOW that homeschooling would be less stressful for me, but being stressed out & hating life in public highschool feels.. normal. Which is not something that I get to experience often. I cried when I finished my freshman year with a 4.00000 not because I was happy or proud, but because it felt like I was punching my P.A.N.D.A.S. in the face. That might sound weird.. but there's just no other way to put it, hahah.

 

Anxiety could definitely be a trigger! My social anxiety at school is skyhigh, so it's difficult to differentiate that from the wakingup fog. My OCD has been keeping quiet lately (knock on wood), so thank God for that. My teachers will NOT let me pace in class, hahah. I'm so glad to hear you've seen progress!! Stories like that give me hope. Relaxation techniques would definitely be worth a try! I can't really give you advice as to what works & what doesn't since, as you've probably seen on the forum, my family isn't exactly proactive with treatment. I can't wait to sign on one day & see that you've reached that 100%!!

[matis_mom]

I have been considering homeschooling for years now but I just don't think that I can do it. I'm completely open about my disease, but one of the points that I have always stressed is that I will NOT let it take anything away from me. This might be a little "angry at the world", but oh well. When I woke up totally fogged this morning I dragged my sleepya## to Chemistry even though I wanted to do nothing more than lay in bed & be miserable. Why? Because that teacher was not about to feel the satisfaction of marking me absent. I refuse to be "just another kid" with some rare condition to the faculty. I KNOW that homeschooling would be less stressful for me, but being stressed out & hating life in public highschool feels.. normal. Which is not something that I get to experience often. I cried when I finished my freshman year with a 4.00000 not because I was happy or proud, but because it felt like I was punching my P.A.N.D.A.S. in the face. That might sound weird.. but there's just no other way to put it, hahah.

 

Anxiety could definitely be a trigger! My social anxiety at school is skyhigh, so it's difficult to differentiate that from the wakingup fog. My OCD has been keeping quiet lately (knock on wood), so thank God for that. My teachers will NOT let me pace in class, hahah. I'm so glad to hear you've seen progress!! Stories like that give me hope. Relaxation techniques would definitely be worth a try! I can't really give you advice as to what works & what doesn't since, as you've probably seen on the forum, my family isn't exactly proactive with treatment. I can't wait to sign on one day & see that you've reached that 100%!!

Oh goodness! Your post gives me so much hope! You have an amazing determination, that is just awesome! I am also happy to see how your faith plays in the mix (that's on another thread, but I thought I'd bring it up). For my ds, I know God has a wonderful plan. I'm just not seeing it right now, I wish He'd let me in on this secret!

But what encourages me is to see that with determination, you can overcome this. Yes, it's hard, but you can do it if you try hard enough. My son is 12, and of course he tries to get away with certain things, and it's such a fine line between "accomodating" and letting him get lazy! I will remember your post next time he tries to cut down on schoolwork! Thanks again for sharing, and I'll let the world know when he's back 100% for good (he was there after the first steroid burst, so I know he can get there given the right conditions!)

Edited September 9, 2010 by mati's mom

[trggirl]

For us, it's the worse symptom. It's like her brain is popping and going many miles an hour and she can't slow it down long enough to concentrate and answer the simplest questions. It is very frustrating. I have found that information is going in though. She may not be able to get it on paper, but when her brain calms down, she amazingly knows the material. I do think it might be OCD though.

[Worried_Dad]

This was one of our son's (now 14) most crippling symptoms, too. He absolutely could not focus, could not do more than 10-15 minutes of homework at a time, and often had to re-read the same passages over and over. Frankly, he missed most of the last 3 years of school because nothing we tried worked. (We did homebound schooling, home schooling, he still couldn't manage to keep up with his classes. And this was a kid who excelled academically until the PANDAS bus ran over him.) He also couldn't even attempt to work if there was any distraction at all: any noise, too much light, strong smells (major sensory defensiveness).

 

I think some PANDAS kids find the non-stimulant ADHD meds (strattera, intuniv) to be helpful for sharpening focus. Beth Maloney felt that strattera really helped Sammy in this regard. We tried strattera for about a month, but our son didn't feel like it helped at all so we discontinued it.

 

One corollary of the brain fog seemed to be memory and recall issues. Our son told me he can't really remember anything from before he got sick (broke my heart). When he was 1st diagnosed with Sydenham's chorea, someone on the SC forum I used to frequent drew the following analogy: said SC (or PANDAS) takes your brain's "card catalog" and throws it up in the air; all the books are still in the library, but the map to their locations is all mixed up and it's hard to find the right shelf. Eventually, she said, the card catalog will get reorganized and all of those memories will be accessible again. Hope to heck she's right!

 

So here's a positive note - our son just started back to school (1st year of high school... gulp) for the 1st time in 3+ years. Right now, he's finishing up some homework in the family room while our youngest watches a movie on the TV, our middle son's (loudly) getting breakfast, and our puppy is yipping. And he's able to concentrate enough to keep working; hasn't complained. Compared to the past 3 years, that feels miraculous!!! So with the right treatment (augmentin XR for our son) for the right length of time, healing does occur and the fog does lift!

[LNN]

Worried Dad,

You and your son are like my lifeline right now. Unfortunately, my son doesn't weigh enough to take 2000 mg XR, so we're having to cut the 1000 mg pill in half and take half every 12 hrs,which is still giving him the augmentin, but we're not getting the time release benefit. Will have to fatten him up, but at 63 pounds, that may take awhile.

 

But knowing that the info is getting in helps. My son describes it as the spark you get when you connect two live wires. He knows his brain is supposed to connect the two wires. But then he holds out his two index fingers and tries to touch them together, purposely missing by a mile. He says that's how his brain feels all day. He can't get the wires to connect. He brings home school work that shows he clearly has no idea what's going on at least part of the day. He's lost and faking it and when he gets home, he just wants to veg. Can't tell you how many times a day I think about quitting my part time job, pulling him from school and just spending this year at home. But then, how would we pay for all the doctors visits?

 

At least knowing that your son has climbed back out of the hole gives me something to hang on to. Thank you!

 

Laura

[dcmom]

I will add our experience with pandas "cognitive fog" which for us comes with a lack of short term memory, also.

 

My youngest ut daughter started with pandas halfway through kindergarten. She rec'd antibiotics, which helped- but relapses and low level symptoms remained.

 

In her worst- the cognitive fog was visible- she would appear daze-like, and all she could do was watch tv. In her better moments, things appeared normal, but homework was a MAJOR chore, she could not write her numbers from 1 to 20, she could not recite the days of the week, and she was VERY resistant to reading.

 

Honestly, since pandas hit her so early in school- we did not know how much of these cognitive difficulties were her, and how much were pandas.

 

So fast forward to October of first grade. She rec'd plasma pheresis for pandas. Literally, the day after she came home from the hospital, she read my mom a stack of six books (for almost an hour- HER IDEA), she wrote her numbers from 1 to 100 perfectly with no help, and I said the days of the week to her once, and she learned them.

 

SO- while it sucks that all kids can't get plasma pheresis- it really proved in my daughter's case that this "cognitive fog" was completely pandas.

 

The day she returned to school they pulled her out for the yearly testing (I was furious!) and she tested advanced in math!

 

So- to give everyone hope- I really believe the cognitive fog is all pandas. When the pandas gets under control, it will clear up. AND- it seems that my daughter was actually learning everything during that foggy time- she just couldn't get it out onto paper (or verbally)- because she didn't miss a step in school after having been in a fog for half of kindergarten and two months of first....

 

LLM- I am SO sorry your son is going through this, how I HATE pandas. I am hoping the lyme treatment offers you some help- but also wonder.... you know both of my kids have had pheresis with pretty good outcomes. BUT both have had some symptoms that lingered longer- but that time has helped. So I think you can still hold out some hope that this will clear up?

[JAG10]

Did you take the BP3 and the ultra pure fish oil??

 

DD cognitive fog is definitely clearing bcs now she's really complaining about taking some many pills! She takes 3 of the Zone pure fish oil, one HTP, florastor, and her abx; so no "multi-vitamin" in the mix. You think adding BP3 would be ok with that mix?

[Fixit]

It's the worst symptom for my DS15. In the past, we made headway with two things. I hope they still work as we're going to start them both up again. The first was a vitamin called Basic Preventive 3 by AMNI or Douglas labs. When my son took them before he was like night and day. They take a similar one on the Tourette forum. It is high powered. His thinking really cleared up. You are suppose to take 6 a day.

 

The other thing we did was get him Occupational Therapy using the "Brain Gym" program. That helped the right brain work with the left brain. I'm thinking, of adding non drowsiness Claritin too. I think many here suffer from allergies or immune haywire and often it's histamine coming in to the mix too. Can't hurt....

 

Can't wait to hear more replies on this topic.

 

Nancy

 

i posted this yesterday on a thread i had started, as on tuesday it looked/s like we are having a significant relapse...(screeches/hoppng)...now concentration

 

 

but to add some info...ds is reading in the bedroom...taking for ever...everytime i go in he's fiddleing with somethng..

he said he cant' focus....i said, yah its hard there is alot going on(3kids, laundry etc)..

i thought for a second...and asked ..is it all the stuff going on, or is it that you just cant focus....he said i just can't focus

so i asked...is that just today...he said no.it started yesterday...we had adhd problems in past...things were good in that area lately...and exceptional so far this school year...

 

we had done a brain balance program where they balance right and left hemi....i would say it corrected his adhd..(even when i started that program i was questioning them on what they new about pandas...they are also the same group that put ds on taurine...even though his taurine already marked high)...

 

how was your experience...was yours covered by ins....the program we did is considered a school,(so out of pocket 6K) even though their objecttive treats, add/hd, ocd, ts, autism...some have had really great results...but i wonder if it was for those with gut isssues....ds did seem better at end but not healed....i'm starting to wonder if it would be worth it.....

exercises 3x a day...aminos, vitamins,2 x's gfdf..going there 3x a week....30 min away....over 3 month period

[tpotter]

I read Emerson's response to my 14 (almost 15 yo) DS, so they are really very similar. He said: "oh my g-d, that's so true." He also said that it's like a "white out", where "it's like a blackout, but you know what's going on, you can't focus, and you can't remember what you've been taught.

 

Also, Dr. L. talked about "brain fog" and "cognitive fog" when she testified for us last school year (we were in a VERY nasty Due Process hearing, and trust me, the school district didn't stop at anything to accuse me, accuse my son, etc.) I realized she was discussing it, the other day, when I was highlighting information that pertained to his functioning in school, so I could read it out loud during mediation (we settled Due Process, only to end up in mediation :-0! There was no way they could refuste 5 drs. including his psychologist who was present. But, when I got to "brain fog"/"cognitive fog" (she used both), I even repeated what she was saying!

 

BTW...the mediator was wonderful, and worked out an agreement that gave us exactly what we were asking for (and needed). The district was very lucky that we had had 3 years of exceptional help from the high school (where he was going to go) with my, now 17 yo, so we kept "stroking them", and telling them that they certainly do know how to help in crisis, BUT, our 14 yo had had nothing but failure in 2 different district schools, his perception was that it was going to be horrendous, AND, his 5 doctors wrote some exceptional letters.

 

So, one problem down...now we're just waiting for approval on IVIG (that battle's been going on for 3 months :-(

[MomWithOCDSon]

Thanks, everybody!

 

Emerson, you really are inspirational, even more so to my DS13. You're so articulate and open, great gifts with which to roar into adulthood! And the sheer determination . . . it's got my DS going! He's sensing an older, wiser kindred spirit, which is always a good thing! Thanks!

 

WorriedDad, we continue to be encouraged and inspired by your family's journey. Next month, we'll have been taking the XR for a full year, and I have in hand a prescription to take us another couple of months past that point if necessary. I still wish I knew exactly what mechanism in the stuff makes the difference, but like you, I'm just grateful we've had access to it as long and as consistently as we have. Our brain fog still creeps in now and again, though, like I said, predominantly during "high anxiety" moments, so while I continue to believe, like you, that long-term XR may be an ultimate key, sometimes we need more help with the "here and now." Our DS continues to take a non-stimulant ADHD med (Intuniv rather than Straterra), and while we think it has helped with school focus, it doesn't entirely offset the "anxiety fog." Our boy still needs a quiet, non-distracting environment for getting through homework, but at least he's getting through it! Maybe one day our DS will be as easy-going and non-chalant about it as yours! Keep bringing on the inspirational, triumphant stories! We're soaking 'em up!

 

BP3 and Brain Gym are entirely new to me, but I'm very interested! Thanks! Running off right now to Google . . . .

[purple66p]

Definitely a problem for my son as well. He has extremely slow processing speeds (< first percentile) and poor short term memory. One of the most frequent triggers for an explosion is "forgetting what I was about to say [or do.]" This happens several times a day. He also complains that "my brain is not recording this." I think that is his description of brain fog.