Brain Fog

[Kyler]

I need inside info from the experienced POTS sufferers again. My son is not doing well in his first 3 weeks of school. He is failing everything but not for a lack of trying. His grades are very inconsistant - 92% on a vocab quiz and then a 60% on the test on the same material??? I have a 504 in place and all but 1 teacher is cooperating and trying very hard to help him but it's not working. When he studies for a test he knows it all but then he forgets it in school or maybe when he stands up-I don't understand. He used to be a good test taker.

We just switched his meds and that is helping a little bit. I don't know what to do to help him. He is very mobile and can physically get around school and he "looks great". He has a very upbeat and positive attitude at school even when he feels bad so the teachers don't even know when he is having issues. They describe him as "wound up" or "giddy" but he comes home he is exhausted-I think he runs on the excess adrenaline until school gets out.

He says that sitting in regualr desks feels fine to him (he has 90 minute classes) but I am wondering if he would retain more if he was reclined during class?? He insists that he doesn't want to do that and it won't help him ( I think that it embarrasses him) but he is like an alzheimers pt. - even at home. He is frustrated by his forgetfullness.

His bad english teacher told him the other day that his memory isn't that bad and he just needs to "dig deeper". I didn't go and slash her tires but we are having a conference tommorrow and it's on like donkey kong!! She has said several things that have shown her lack of understanding and compassion and I'm going to school her. i have several articles and 9 months of pregnancy hormones ready for her.

I thought that most POTS kids had to be home schooled because they couldn't physically get to or stay in school. I want to keep him in school if at all possible but have him succeed too. Is this why POTS kids get hoem schooled. Will it help if he learns at home or will he never remember 7th grade no matter where he learns it? How do I tell the school that we need to make MORE accomodations when his outer appearance and attitude is so good?

Thank you in advance for any input.

Serena

[erik]

My brain is *intermittent* too. Does he happen to have a few especially good hours at a certain time? I've gone through phases where the AM gives me an hour or two of feeling normal... and times when the evening supplies a few hours of normalcy. Does he have a pattern like that which could be taken advantage of? Would his teachers allow him to take tests 'ad hoc' like on his own call... or on his own schedule?

Is temperature a factor? It is for me. I just read my first book in 20 years (first since dropping out of college)... it took a month and I had to run my A/C constantly and alternate between coffee, naps, walking, laying down, crying... like a crazy ritual... but A/C was key. I will go into instant daydream mode when warm (or back in the day when in school... if the female classmates were provoking a more general warmth Could he get a quiet A/C environment for testing? Could he take a nap just prior... sometimes I get "clearer" briefly right after a nap. I don't know, I'm just brainstorming... back in my day there was no such thing as "accommodation"... we just became losers and learned to like it. He's lucky to have you as such a good advocate. I am envious.

[anna]

Hello Serena,

Does your son use a lap top (computer) for note taking and class work? my kids can not survive without there's it helps them organise their thoughts.

Anna

[potsgirl]

Hi Serena,

My boyfriend is a high school teacher, and he deals with quite a few '504 kids'. Several of them leave the classroom to take tests; they go to a special room that is quiet and less anxiety-producing. I know he works closely with the school counselor to try to meet the needs of these kids. Is your son's school counselor involved in working with his teachers? Re the reclining...I could see where that would make him feel like an outsider, and during junior/senior high, that's exactly what kids don't want to be. Those 90 minute classes are tough, though! I've done some subbing, and they get loooooong. I couldn't do it!

Anyway, I would try to work with the school some more, and see if his new meds continue to help him. Just my opinion, but I would home school as a last option. He's getting valuable social skills (not saying home schooled kids don't) and gets to feel 'like everyone else'. Very important at this age!

Best of luck to you!

Cheers,

Jana

ps....i'll see if any of the teachers i know have any other ideas....

[bkweavers]

Serena,

I know you heard what we've done with Liz but is he still going full-time? Having Liz start later in the day and allowing her to sleep longer really helped. I think I may have told you this before but he may need to go into special ed so more accomodations can be done for him or maybe just the later start to the day would help a lot. He could take homebound classes too if he misses them in the morning.

As for that teacher, I wish to God that I lived closer to you. I would come to the meeting as well and tell her all about our daughter and the **** we've been thru with her. For some reason, she refuses to believe your son is really sick and I don't know what it's going to take to get her to stop acting this way. It really makes me mad!!

It sounds like something drastic has to be done for all of your sakes. I'll be praying for the meeting that things will get figured out.

Take care of yourself too!

Brenda

[sue1234]

Maybe you could bring a brief print-out of a description of POTS and bring in his bottle of meds to "prove"(by way of the doctor's treatment) what is happening to his BODY that ultimately happens to his cognitive issues. Then she could use this information to better understand EXACTLY what is going on with him. Hopefully she'll see that environment plays a big role in his abilitites and maybe will find a way to accommodate him.

[juliegee]

Hi Serena,

I've been there with my son & still am Good for you for getting a 504 plan put together so quickly. Your next job is really getting your son's teachers to understand the extent of his physical problems, how they interact with his cognitive function, and the intermittent nature of his symptoms.

I've done this research before, when I've wanted to bring in published articles to educate my son's teachers, but I'm in a hurry now. I'll try to send you more later. For whatever reason, there are many more articles that explore the cognitive ramifications of CFS (chronic fatigue syndrome) than those with OI (orthostatic intolerance.) Keep in mind that 90% of folks with CFS also have an OI. So the overlap is significant. The problems are focused around: speed processing, memory (especially working memory issues), attention, cognitive retrieval tasks, etc. Here is a sample of an article that popped up when I googled "CFS & learning difficulties":

Cognitive slowing and working memory difficulties in chronic fatigue syndrome

PS Marshall, M Forstot, A Callies, PK Peterson and CH Schenck 
Department of Psychiatry, Hennepin County Medical Center, Minneapolis, MN 55415, USA.

OBJECTIVE: Patients with chronic fatigue syndrome (CFS) commonly report problems with attention, memory, learning, and speed of cognitive processing. This study attempted to evaluate these complaints using objective test criteria. METHOD: A test battery composed of six tests assessing these cognitive functions was given on two consecutive days. Twenty CFS patients were compared with 20 healthy control subjects and 14 patients with a history of major depression or dysthymia matched by age, intelligence, education level, and sex. RESULTS: Compared with control subjects, CFS patients consistently scored lower on tests in which motor and cognitive processing speeds were a critical factor, eg, reaction-time tasks. They also had more difficulty on working-memory tests in which rapid cognitive processing speed is also an important factor. The effort made on the first day of testing did not result in a decline in cognitive function on the following day. CFS patients did not qualify as having affective disorder by several different diagnostic criteria. Nonetheless, CFS patients' test performances did not differ from patients with a history of major depression or dysthymia. CONCLUSIONS: It is concluded that, although CFS and major depression and dysthymia have distinct clinical features, these disorders have slowed motor and cognitive processing speed in common. 


(The psychiatric issues are a red herring in this abstract, but I just wanted to give you an idea of what's out there.) There's also information that more specifically pertains to OI's and cognitive dysfunction.

A good battery of neuropsychological testing (or a psychoeducational battery of tests) will easily reveal your son's deficits. My son's cognitive deficits were huge (eerily similar to those described above) despite a high IQ. I'm sure you'll find the same thing- given your son's prior school success. This testing is critical as it will enable your son to have more appropriate school accomodations, including extended time on testing, adequate warning for tests & quizzes, no pop quizzes, etc. This testing will also be the foundation in proving he will need extended time for his SAT/ACT with the College Board. (My son is allowed time and a half & breaks as needed.) You need to begin documenting (via testing) Kyle's cognitive deficits ASAP.

Here is a great link with invaluable school information for kids with OI's:

http://www.pediatricnetwork.org/school/index.htm

Sorry you are having to deal with this as you prepare for your new arrival. Kyle's lucky to have you. Give him a hug & let him know you recognize he's trying hard & his illness isn't allowing him demonstrate all he knows to his teachers. The testing will reveal his deficits and force his teachers to accomodate him. Hopefully, the articles you find will help his teachers understand how his illness impact's him cognitively.

Hugs-

Julie

[juliegee]

My brain is *intermittent* too. Does he happen to have a few especially good hours at a certain time? I've gone through phases where the AM gives me an hour or two of feeling normal... and times when the evening supplies a few hours of normalcy. Does he have a pattern like that which could be taken advantage of? Would his teachers allow him to take tests 'ad hoc' like on his own call... or on his own schedule?

Is temperature a factor? It is for me. I just read my first book in 20 years (first since dropping out of college)... it took a month and I had to run my A/C constantly and alternate between coffee, naps, walking, laying down, crying... like a crazy ritual... but A/C was key. I will go into instant daydream mode when warm (or back in the day when in school... if the female classmates were provoking a more general warmth Could he get a quiet A/C environment for testing? Could he take a nap just prior... sometimes I get "clearer" briefly right after a nap. I don't know, I'm just brainstorming... back in my day there was no such thing as "accommodation"... we just became losers and learned to like it. He's lucky to have you as such a good advocate. I am envious.

That breaks my heart, Eric. So many dsyautonomiacs growing up in the 60's, 70's & even today are labeled lazy, under achieving or "losers." My nephew (living in a different state) has become increasingly reclusive. He's even dropped out of high school. My bro (with dysautonomia) & his wife constantly berated him. I've long suspected he had dysautonomia symptoms & did my best to persuade them- to no avail. My nephew's psychiatrist (of all people!) has finally ordered a TTT. BRAVO!

Julie

[Kyler]

Update

Thank you all for your input and resources. I met with the Dean of Special Resources today-the new title for the vice principle (she used to be a special ed teacher) and she was very supportive and suggested that we start the 65 day process to classify Kyler as special education so that he can get any accomadations that he needs and maybe even do shorter days. She also said that she is getting a recliner in her room and Kyler can come take tests in it or on a special padded table that he can lay on if he needs to. She is so efficient that she said she would have the paperwork ready on Monday - she totally gets it.

Kyler told me today that he realized that he needs to give up band. He plays the beritone and as so far he has not made it thru a whole band class without a bad headache even with motrin and tylenol before hand- he says it's not just the blowing but the noise. I cried about it last sunday because I feel like this stupid illness is taking things away from Kyler piece be piece (bike riding,boy scouts,beritone). She said we could replace band with a resouce class to help him with difficult subjects and give him time to do homework at school instead of trying to do it at home when he is wiped out.

The conference with Miss ignorant english teacher got rescheduled for Monday. I told the dean about all of the issues with the ignorant teacher and she is going to help me address the issues at the conference. She agreed that many things were inappropriate and she said that we will make sure it goes better. I'm thankful that his other teachers are awesome - just 1 bad out of 5 isn't bad . I feel so much better now.

Erik - temp is a super factor for him and the dumb english teacher initially didn't have her AC on in her class on 95 degree days-i took care of that as soon as Kyler said he had to ask her to turn it on. The daydreaming sounds like him. He has a hard time napping during the day even when he is exhausted - i think from the extra norepi - he is wired at school.

Anna- he just got a laptop at home from my parents but he can't function fats enough to take notes on it so he uses it at home only but the dean told me today that he can use laptops at school to take tests and stuff.

Jana- I have everyone involved but the english teacher has not been communicating with me and we had to wait to see how things would go since he was diagnosed right at the end of school last year. the dean of special resources and his guidance counselor have been great at coordinating everything.

Brenda- he is still going full time since his insomnia has gotten better with the new BB and he is less exhausted with a lower/normal BP at the end of the school day.

to everyone Thank you again for your support - you all are lifesavers yet again.

Sincerely, Serena

[erik]

That sounds like great progress. I hope other pieces fall in to place as best they can in the future. A recliner sounds sweet... how enlightened! Happens to be where I'm most at home too... Mr. Lazee-boy Despite the brand name and stereotype... it can be a very productive device. Seems to hit the baroreflex sweet spot and things settle down nicely.

One thing sunk in that you mentioned above... it sounds like he's learning stuff reasonably well when studying and the recall or test performance is more of the issue. Hopefully that will improve with the accommodations but also one consolation in that is that the key process is still happening pretty well... the learning part! It's frustrating to have test scores come up lower than they should, but there's a good chance with all the extra effort he puts in he's actually getting more out of school than many classmates!

Sorry to slip in my self-pity above! I appreciate your sympathy for the issue, Julie. Hope the nephew stops being a lazy bum! (sarcasm of course . There's an odd aspect and art to being an underachiever... it can bring a certain sense of ironic accomplishment... as does surviving the gauntlet of usually well meaning folks that misunderstand! The cool thing is that things have improved so much even though not perfect. I think a great many folks have put it valiant effort and heart to helping kids maximize their potential and lives. Kudos to the parents that wear themselves ragged advocating for their kids over these complicated issues... it's amazing. You're amazing.

[ajw4790]

Hi,

Sorry that he is having so much trouble. I can identify with some of what he is going through. I had issues all through school, and had to leave grad school because of dysautonomia.

Some thoughts I had after reading...

-Remind him it is good to fidget in his chair and to do leg squeezes etc.

-See if there is a way for him to prop up his legs while sitting (footstool)

- I learned that I could not really do the 90 minute classes with no break. Legally they should get a break after a certain amount of time. Work with the school to make sure they are getting it. Also, make sure he gets up and walks during break even if he feels tired. Also, I got clearance to get up and leave as needed to help with this.

-Make sure he is able to have access to water at all times and have a steady stream throughout the day to avoid dehydration.

-See what can be done to control the temp of his classrooms. Also, help him with wearing layers and having a sweater etc. at school.

-Get permission for him to have snacks on him to eat as needed. Try to help him ID when he should breakdown and eat.

-I had serious concentration/staying awake issues in high school. I found sucking on hard candy or mints to help keep me a little more alert.

-Encourage him to eat his lunch. I was awful at actually eating lunch. Help him to avoid carb foods that will lead to a quick crash after eating.

-My heavy backpack was also a big trigger for me. Work with the school to see what can be done about lightening his load.

-See if they can let him pick where to sit in each classroom. Front may be better for less distractions and to keep attention to what is going on. But, also I always felt like I could not fidget etc. the way I wanted if the whole class was watching. So, he may prefer the back. I would also suggest a seat at the end of a row, and preferably close to the door. That way if it is hot, they can leave the door open and he gets the air. Also, if he needs to get up he is close to the door. Also, avoid having people on all sides. They all create more body heat and distractions.

-Figure out if he learns better from listening or taking notes. Multitasking like this all day is super tough. So, maybe he can just listen and get notes from someone else, tape record the lectures, etc. I tended to find either I could listen and follow along in class or just work to copy notes, I was not always good at doing everything. If they use the same thing year after year, see if he can get the notes before hand, and then take his own notes as they go through the lecture.

-If there is a teacher that moves super fast, see if they can slow down. If there is one that jumps around, see if anything can be done.

-Do what can to avoid/deal with distractions. In middle school a teacher refused to move me from a table of 4 students, and 2 of the 4 were some of the biggest pot heads you ever smelled. I think I killed more brain cells in that class, then facts I learned. I even talked with the teacher multiple times about needing to move, and never got anywhere. It was awful! Perfume etc. could also be just about as bad. Also, see if teachers will inact a no using smelly lotions etc. in class rule. I always hated when that girl would pull out her expensive smelly lotion every day to show off and give me an instant headache.

-Work with his dr. to get him on best schedule for optimum results for during school hours.

-See if he knows if he learns better if room is light or dark? Does he prefer teacher to use a markerboard etc., projector, powerpoint slides, etc.?

-Or less he wants to recline, I wouldn't push it. Not all of us feel better reclined. I don't. It would make it hard to see board etc. too...

-Could try to test in another room, or just work on where he is in class to minimize distractions etc. I had a classroom where a flourescent light was going out, and would go on and off, and make an awful buzzing noise. If there are things like this, see if the school will work with you to fix them.

-Work with him on any test anxiety or focusing to the task at hand when handed a test and becoming able to block everything else out. Maybe even ear plugs??? And if it would help he ease any stress etc. to take advantage of extra time to take a test.

Hope that some of these ideas help!

[juliegee]

Update

Kyler told me today that he realized that he needs to give up band. He plays the beritone and as so far he has not made it thru a whole band class without a bad headache even with motrin and tylenol before hand- he says it's not just the blowing but the noise. I cried about it last sunday because I feel like this stupid illness is taking things away from Kyler piece be piece (bike riding,boy scouts,beritone). She said we could replace band with a resouce class to help him with difficult subjects and give him time to do homework at school instead of trying to do it at home when he is wiped out.

Sincerely, Serena

What a coincidence. Mack played the SAME instrument as Kyler at the SAME age. He also had to give up band, which he adored at the time. I totally understand your heartbreak

Mack switched his attention from the baritone/euphonium to the electric guitar. Much better choice for him. The baritone made him so lightheaded and also gave him a headache. He can either sit or move around stage when he plays the guitar. Guitar Hero is how he started Might be a fun switch for Kyler. He can nurture his love of music, just a switch in instruments...

Here's a clip Mack (on the far right) and his band. YOu can recognize the dysautonomiac by how much he moves around the stage- Awful video, but don't they sound great?

Julie