Cognitive Fog

[norcalmom]

Worried dad- didn't your ds also do ivig in July? Do u attribute change more to aug XR or ivig (if that was same son..or even same kid-sometimes I mix up our acn names due to my own brain fog)!

[EmersonAilidh]

Worried Dad & LLM.. Those are GREAT analogies. For me it just feels like my brain is.. blank. It feels hollow & like an expanding balloon. Quite frankly.. It just feels like brainfog.

 

I have homework (Advanced Algebra II.. Wish me luck) so although I've read all of the responses I don't have the time to reply to all. The moral of the story here seems to be that we need to focus on brainfog a lot more. In all honesty this is one of the first times I've seen it brought up on the forum. I wish Buster would chime in here because I seriously don't even understand, well, WHAT BRAINFOG IS!!

 

I'm glad to hear that most of your kiddos are doing better for the most part! So encouraging. <3

 

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Edit :

 

Also just wanted to add that short-term memory issues have been a problem for me too. I just looked at my math homework (I had the class from 1:00-2:30 today) & realized that I have no idea what I'm doing. Not in the "I'm behind in math" way, but.. I seriously don't even know what we're doing..

Edited September 9, 2010 by EmersonAilidh

[lynn2]

Last year my DS14 discovered Stash decaf chai tea and swears it helps him focus. I watched him and it seemed like it really does. Don't know whether it was the spices (anti-inflammation?), the hydration, the ability to step back and drink the tea or just plain placebo effect, but if it works, who cares? I also give him grapefruit seed extract because the brain fog can be yeast related. Emerson, I so feel for you because I remember DS coming home furious with himself because he had no idea of the homework or what they covered in class because he hadn't been able to focus. Good luck to you this year, but with a 4.0 average, it looks like you are making your own luck!

[Worried_Dad]

I wish Buster would chime in here because I seriously don't even understand, well, WHAT BRAINFOG IS!!

 

Buster could explain this the best, but I'll take a shot at conveying my understanding. The CaM kinase II activation levels that Dr. Cunningham tests for could explain some of this, I think. These enzymes are critical for neurotransmitter secretion and research indicates they may also be critical in memory formation. So the over-activation in PANDAS could explain why short-term memory is affected, and the stimulation of neurotransmitters can cause too much "noise to signal ratio": a PANDAS sufferer's neurons are firing so frantically that there's just too much background static to sort out the "important" thoughts from the random, irrational stuff. Threads of reasoning and short-term memories get "lost in the fog."

 

The basal ganglia is such a critical control center for so many brain processes. When the PANDAS autoimmune attack inflames it and disrupts its normal signaling, it's not surprising that all heck breaks loose!

Edited September 10, 2010 by Worried Dad

[EmersonAilidh]

I wish Buster would chime in here because I seriously don't even understand, well, WHAT BRAINFOG IS!!

 

Buster could explain this the best, but I'll take a shot at conveying my understanding. The CaM kinase II activation levels that Dr. Cunningham tests for could explain some of this, I think. These enzymes are critical for neurotransmitter secretion and research indicates they may also be critical in memory formation. So the over-activation in PANDAS could explain why short-term memory is affected, and the stimulation of neurotransmitters can cause too much "noise to signal ratio": a PANDAS sufferer's neurons are firing so frantically that there's just too much background static to sort out the "important" thoughts from the random, irrational stuff. Threads of reasoning and short-term memories get "lost in the fog."

 

The basal ganglia is such a critical control center for so many brain processes. When the PANDAS autoimmune attack inflames it and disrupts its normal signaling, it's not surprising that all heck breaks loose!

 

So.. Let me see if I understand that. P.A.N.D.A.S. kids have too much of the stuff that is responsible for transmitting things to/from neurons, CaM kinase II. That basically means that our brains basically just get overloaded & are trying to process way too many things at once? All on the same priority level, too?

[JAG10]

That's a pretty good explanation WD. My dd had a SPECT scan at the Amen Clinic when she was 7, 3.5 years ago. It was determined she had "Ring of Fire" ADHD which basically meant the whole perimeter and cingulate gyrus (i.e. brain gear shift) were overactive.

 

As they explained it, Ring of Fire ADHD is supposed to be very close to bipolar disorder, but she did not have many of the bipolar symptoms, no raging, grandiose behavior, ODD; but did have the silly, goofy, hyper piece, so they dx'd her mood disorder-nos (even more "throwaway" than bipolar!!!)

 

I brought these SPECT scans that measure activity with me to Chicago for our follow-up appt in July. Dr. K explained (in terms I could understand) the signaling is too general and grossly conveyed, not focal enough, so large areas become overactivated resulting in neurological chaos. This is similar to his analogy on the Autism One interview where he discusses the instruments of the orchestra all playing their own tune at their own pace and volume because the conductor cannot communicate with them. All the components are there but without organization, synchronicity and cooperation the "music" is torture rather than a symphony.

Edited September 10, 2010 by JAG10

[RNmom]

My ds14 has really bad "brain fog" right now. This thread is so helpful - I thought the cognitive haze was unique to him and I have been extremely worried. He is now 6 weeks post plasmapheresis and healing very slowly. During a follow up visit with Dr. Latimer this past week I learned that the brain continues to heal for @ six months after plasmapheresis. This information gave me a better perspective on my son's "rate of healing." I can only hope that as my ds14 continues to slowly heal this "brain fog" will lift.

 

He is on home bound status with the school - so there is flexibility in learning. But, the fog interferes with every aspect of his daily life. It is definitely one reason he is not quite ready for ERP therapy right now (but he is in traditional therapy to help with the post traumatic stress from the whole PANDAS experience). Thank you for this thread!

[EmersonAilidh]

My ds14 has really bad "brain fog" right now. This thread is so helpful - I thought the cognitive haze was unique to him and I have been extremely worried. He is now 6 weeks post plasmapheresis and healing very slowly. During a follow up visit with Dr. Latimer this past week I learned that the brain continues to heal for @ six months after plasmapheresis. This information gave me a better perspective on my son's "rate of healing." I can only hope that as my ds14 continues to slowly heal this "brain fog" will lift.

 

He is on home bound status with the school - so there is flexibility in learning. But, the fog interferes with every aspect of his daily life. It is definitely one reason he is not quite ready for ERP therapy right now (but he is in traditional therapy to help with the post traumatic stress from the whole PANDAS experience). Thank you for this thread!

 

I was happy to see this post too! I've never seen brainfog being discussed on the forum. It's something we all need to talk about more!

Brainfog is most definitely not a problem exclusively with your son! & I hope that it goes away along with the rest of his symptoms post-Plasmapheresis.

 

What are "home bound status" & ERP therapy??

[MomWithOCDSon]

What are "home bound status" & ERP therapy??

 

"Home bound status" means that, usually through an Individual Education Program (IEP), a student has been granted a "leave of absence" in essence, to conduct their studies at home because of an illness. If you're "home bound" due to a recognized illness, you can get tutoring services through the school, and your absences from the actual school building do not count against you or endanger your opportunity to move forward with your class when you're ready to return.

 

ERP therapy is Exposure Response Prevention therapy, commonly used to combat OCD. Basically, you are exposed to your fear and prevented from undertaking your typical, OCD response to that fear (such as performing a ritual to manage the anxiety). By doing that over and over again, you become more "habitualized" or "normalized" to that which you fear, and you eventually no longer feel the need to perform a ritual in response to being exposed to it. This breaks the cycle and makes the OCD take a step down, basically.

[MMC]

It was good to hear everyone's thoughts on this. My ds12 asked me the other day..."Does PANDAS cause amnesia"? And he has commented, "I'm not as good in math any more". Which is sad, because before he got PANDAS (onset March 2009), he was excellent in math. I was very proud of him because I was horrible at math, and had to have a tutor in high school and early college. But now, he will struggle some too, but will overcome, I believe. Emerson, you're definitely an inspiration, thanks for sharing all that you have. I had PANDAS as a kid too...they called it SC, but it was PANDAS...I guess that's why I was bad in math. But, I managed to graduate from college, even though I had to change my major to something that had minimum math and no chemistry.

 

Our ds14 is on Vyvanse, as I have posted before. She had issues with her recent dosage when school started, but is better since it was backed down. This really helps her focus but can increase tics. I'm not sure our ds could ever take it or any adhd med b/c his tics are so bad.

[tantrums]

This is one I can so totally relate to! I have Chiari Malformation so I get brain fog myself. At least that's one I can have a clue as to what my son is feeling. I have to STILL remind myself though - because his is so constant and all encompassing (mine is more fleeting - day to day).

 

The best thing I have found is just saying calm and TRYING not to loose my cool when repeating things in a monotone voice for the 38th time. I have come to realize, he is still trying to process something I said 10 minutes ago sometimes and the new thoughts will overlap. Does that make sense? So if I told him to get ready for a shower for the first time 15 minutes ago and now I've changed the request (even to try and simplify it) to "take your shoes off" - he will EXPLODE because I'm confusing him and "lying" about what I wanted him to do

[lynn2]

Tantrums, thank you for posting that--it really acted as a lightbulb for me. So that's why I get the explosions in those circumstances!

[tantrums]

Tantrums, thank you for posting that--it really acted as a lightbulb for me. So that's why I get the explosions in those circumstances!

 

 

Its hard to remember some times. I worked in a group home for autistic men for years and now am a case worker for the state overseeing the group homes. I've been in the field of DD for nearly 20 years. So I tend to find myself using a lot of those skills that I learned through the years.

 

one step directions are VERY important for these kids. You just cannot say "go to your room, change into your pjs, then go brush your teeth and pick a book to read before bed." Kids, like mine anyway, just can't process all of that. If mine makes it to his room before my 5th request, he'd forget why he was there

 

So hard to tell when they even heard you though in the first place sometimes

[trggirl]

Nancy, what are you seeing with the SAMe? If you don't mind me asking, what else are y'all taking besides the BP3 and SAMe?