Reading Problems

[jessicaanne010]

Anyone else have trouble reading due to their Dysautonomia? My 9yo was diagnosed with OH (borderline POTS and maybe NCS) almost a year ago. She has been having trouble reading since maybe a year before she was diagnosed. So many things changed after she was diagnosed and started medication that I was kind of hoping that this would resolve itself too. Sadly, it hasn't. When my daughter first started reading in Kindergarten she did fine and didn't have these problems, so I'm still thinking it's related, just trying to figure out how and how to fix it. She has a very hard time putting the letters together to make words and it's extremely frustrating for her. I think she looks at the words and knows that she knows what they mean, but just can't get the signal to her brain. Does that make any sense? She had a regular vision test over the summer and her vision was fine. The virtual school that we use is trying to find her a tutor for language arts, but is having a hard time finding someone in our area. She has a difficult time with writing neatly as well.

Does any of this sound familiar to anyone or do we have a whole separate issue?

Thanks!

Jessica

[ramakentesh]

It must be tough for her - reduced blood flow to the brain may cause cognitive deficets. Perhaps if she read while lying down she would get better results?

[Guest tearose]

Hi Jessica,

Was she recently sick? Did she have a virus or overdo physical activity?

I am sorry for your daughter and understand the problem from my experience but I am much older and do have POTS. Only during a serious relapse will I have this depth of problem myself. In me, I could not "decode" and "absorb" what I was reading and also find myself asleep in just a few minutes. I could not understand what was being said on the TV and yet I was watching the same local news cable loop over and over again. I was "scared" as an adult. I felt I had to find a way to wake up or smack my brain so to speak back into gear. I could not even sort the utensils from my dishwasher basket!!!

Here is what I did and know that I did improve...

I got a little kids handwriting tablet and with my non-dominant hand, taught myself how to write the alphabet and numbers. I got some Mozart ~classical music to help stimulate my brain. I got a jigsaw puzzle and some word find books. I also allowed myself to nap but limited them to 20 minutes at most. It took three months but I eventually started to get some level of function like I had before the relapse. I personally never got everything back...but I was able to watch and understand TV, could read with comprehension and clearly did improve.

I hope you can address this issue with her so her learning can continue!

best regards,

tearose

[jessicaanne010]

It must be tough for her - reduced blood flow to the brain may cause cognitive deficets. Perhaps if she read while lying down she would get better results?

Oh I forgot about that one, we did that before. Will have to try it again. Thanks for reminding me.

[jessicaanne010]

Hi Jessica,

Was she recently sick? Did she have a virus or overdo physical activity?

She had a stomach flu last week, but this has been going on for a while. I don't think last weeks illness really had that much of an effect on her.

Thank you for the suggestions! I will start trying some different things after the holidays. She's will be going to her dad's house on the 23rd and won't be back until the 3rd of January.

[persephone]

Hello. I have POTS and I work in academia. I first showed symptoms at 12, in 1994. When I felt bad, I would find it much harder to concentrate. Before I knew I had POTS (found out I had it in 2005), I had already figured out that revising for exams, or doing my homework, while lying down was what worked for me. I struggled to physically sit up in class but I thought everyone else was the same- I didn't realise it was abnormal.

There were times when I felt really terrible but it didnt stop me achieving- I left high school with straight As, graduated with a 4.33 GPA and am now doing a PhD. There are times when I feel I don't retain things, but I just work as hard as I physically can on days and weeks when I'm well, and find that it just about compensates for the times when I can't.

And if you look back through my posts, you'll see things have been terrible at times- my blood pressure flatlines, I have a wheelchair sometimes. Just this past week I had a terrible flare that saw me unable to get up without falling, but I have just finished an article for publication with Harvard this very week.

I'm not saying this to undermine what you're going through, but to try and give you some hope that things can get better, and that your daughter can go on and achieve things.

Good luck! Keep us posted

[jessicaanne010]

I'm not saying this to undermine what you're going through, but to try and give you some hope that things can get better, and that your daughter can go on and achieve things.

Thank you! And no worries, I took it as you meant it.

[persephone]

I'm so pleased Some folks can get a bit defensive and think I'm trying to say it's mind over matter, which I'm not. I guess I'm just trying to say things can get better.

[ramakentesh]

I didnt get full blown POTS until I was 26 but I had some strange minor stuff going on before then. But in the 6 years that Ive had POTS Ive had periods where I forgot I had it for a long time and other periods where I couldnt even work for 1/2 an hour. So so far in my experience it does seem to wax and wane/remission and relapse course.

In the bad times with POTS you literally cant do stuff - you want to with all your strength but you still cant.

[juliegee]

Hi JessicaAnne,

Since my son was DXed, I've met an inexplicably number of dysautonomia folks with difficulty reading. Some, like my son, have gone on to have a full-blown DX of dyslexia. Others, like me, have intermittent problems related to the severity of their illness.

I strongly suspect that there is some overlap with dyslexia & dysautonomia. Dyslexia tends to be either visual or auditory in nature. Some here have vision processing issues, others auditory. Several components of dyslexia: working memory, speed processing, and auditory memory are ALSO cognitive symptoms of dysautonomia. In other words, if your mind can't juggle several concepts simultaneously, process quickly and efficiently, and remember the sounds you just strung together- you will have trouble reading.

As my son's illness improved, reading was easier, but still very laborious (and exhaustive!) compared to his peers. I would highly encourage you to have her evaluated. The sooner you start remediation, the sooner she will begin to show improvement.

All the best-

Julie

[jessicaanne010]

Since my son was DXed, I've met an inexplicably number of dysautonomia folks with difficulty reading. Some, like my son, have gone on to have a full-blown DX of dyslexia. Others, like me, have intermittent problems related to the severity of their illness.

I strongly suspect that there is some overlap with dyslexia & dysautonomia. Dyslexia tends to be either visual or auditory in nature. Some here have vision processing issues, others auditory. Several components of dyslexia: working memory, speed processing, and auditory memory are ALSO cognitive symptoms of dysautonomia. In other words, if your mind can't juggle several concepts simultaneously, process quickly and efficiently, and remember the sounds you just strung together- you will have trouble reading.

Thanks! That all makes sense. She had an eye exam over the summer, but the doc didn't say anything. I'm going to call him tomorrow and see if he checked for visual processing issues or if he saw something that he didn't say anything about. Then I'm going to call her cardio and see what he thinks about her seeing a neuro to get tested for dyslexia. I'm talking with some other local home schooling parents that have kids with reading issues (both mentioned above) so we should be able to get it figured out and get her some help. I totally agree about not waiting, I'm afraid the longer we wait the more she's going to learn to hate reading - at the moment she loves it so I don't want to damage that.

[ajw4790]

Hi,

Is she taking any medication? What other treatment methods are you/have you tried?

[ramakentesh]

Yeah I seemed to develop astigmatism when i first got POTS or around the time, but I also get symptoms that are very much like Erlen syndrome - visual abnormalities such as tiredness and 'reading hangovers' sometimes. Its strange. When POTS is better its much less of a problem for me.

[jessicaanne010]

Hi,

Is she taking any medication? What other treatment methods are you/have you tried?

For her OH? She's taking 10mg of midodrine 3x's daily, 0.5 (can't remember if it's mg or mcg - lol) fludrocortisone once daily, 6mg Melatonin at night to help her sleep, an Epsom salt bath every night or every other night to help with her stomach/sleep, and a general kids multivitamin. It's only been a year since she was diagnosed, so this is pretty much it. We just switched from Magnesium pills to the Epsom salt baths because the pills didn't seem to really help and it was suggested by someone else with Dysautonomia (can't remember if that was here or somewhere else).

[juliegee]

Thanks! That all makes sense. She had an eye exam over the summer, but the doc didn't say anything. I'm going to call him tomorrow and see if he checked for visual processing issues or if he saw something that he didn't say anything about. Then I'm going to call her cardio and see what he thinks about her seeing a neuro to get tested for dyslexia. I'm talking with some other local home schooling parents that have kids with reading issues (both mentioned above) so we should be able to get it figured out and get her some help. I totally agree about not waiting, I'm afraid the longer we wait the more she's going to learn to hate reading - at the moment she loves it so I don't want to damage that.

When my son was first showing problems with reading, I also had his eye doctor check for visual processing issues. He saw nothing, but Mack's issues are primarily auditory....so there really wasn't anything to see A good speech & language pathologist (who overlaps with reading issues) would also be a good person to check with. This is especially true if you see your daughter mispronouncing words or not hearing them or saying them correctly. If you can't make sense of the individual sounds that letters make, how can you possibly start stringing sounds together?

A neurologist wouldn't be the person to see to get a reading disorder DXed, even if it's totally related to dysautonomia. After having my son evaluated by many professionals, I would recommend seeing someone who regularly DXes the problem that you think she has. The best evaluator he ever saw for READING was the local president of the International Dyslexia Association of our town, who happened to be a speech and language pathologist. He was able to give Mack a definitive DX for dyslexia. Educational psychologists had previously found an auditory processing disorder & speed processing issues. They also DXed him with a Reading Disorder. If you use an educational psychologist, you can have it done through your school system for free.

I lOVE that you keep reading fun & positive. We did that too. When Mack was your daughter's age, we had family reading parties where we each had a favorite book and we gathered together by a fire and read for hours. Sounds boring, but it was fun, really.

Let us know what you find out.

Julie

[erik]

I know reading is a challenge for me and has been since I was young. It tires me out very quickly and requires extreme effort to stay focused. Hard to say if it's directly tied to my autonomic challenges (which sound similar to your daughter's) but they're definitely not going to help any, that's for sure. They do say that high "inattention scores" (like ADHD) are more prevalent amongst POTSies. I've had some luck with nuVigil (like ProVigil) to help with mental focus. Something along those lines might be worth considering depending on what further evaluation turns up. I wouldn't be surprised if autonomic troubles are associated with such cognitive troubles... certainly "brain fog" is well acknowledged in the family of symptoms we tend to get.

[jessicaanne010]

When my son was first showing problems with reading, I also had his eye doctor check for visual processing issues. He saw nothing, but Mack's issues are primarily auditory....so there really wasn't anything to see A good speech & language pathologist (who overlaps with reading issues) would also be a good person to check with. This is especially true if you see your daughter mispronouncing words or not hearing them or saying them correctly. If you can't make sense of the individual sounds that letters make, how can you possibly start stringing sounds together?

I won't hear back from the eye doctor until Wednesday about whether or not he did any testing for Visual Processing. If he didn't, then I will take her to my oldest daughter's Ophthalmologist for testing. I don't think she is having any hearing problems, she doesn't mispronounce words when reading aloud. But I see what you are saying and will keep that in mind. I did leave a message with a Ped. Neuro today to see if they test for dyslexia, if not I will look for a speech and language pathologist. The girls have a routine school hearing test at the beginning of January, so that may show something as well.

Thanks for the input. :-) I called her cardio's office today and she suggested that it might be ADD, she said that some dysautonomia kids have trouble with ADD, not hyperactivity, but just true attention deficit. There is a Pediatrician here that specialize in ADD, but I'd like to keep that for last. :-/

[jessicaanne010]

certainly "brain fog" is well acknowledged in the family of symptoms we tend to get.

This is what her Cardio's nurse was telling me today. I totally get the brain fog, I mean really, I get brain fog too. lol Had it a bit this morning. Ugh.

[bkweavers]

Everything mentioned so far was great and I just wanted to add that my daughter was diagnosed at age 10 and her brain fog was terrible for the first year and a half. I know there may be more going on with your situation and I would definitely get it checked out, but brain fog and forgetfulness are definitely a part of POTS. My daughter would take twice as long on an assignment and still get half of it wrong. She has been in special ed since the start of her POTS and has been able to receive a lot of help. They cut her assignments in half at the beginning and gave her extra help on tests. She missed a lot of school the first year but has gradually been able to be at school for longer amounts of time.

Currently, her brain fog is very much improved. Since a year ago, she's been on the honor roll twice and is able to do her homework with none of my assistance. I'm hoping that the same will happen for your daughter. I know how frustrating it can be for your child and for you to watch her struggle. I pray that you'll be able to find ways to help her succeed and to enjoy reading.

Brenda

[jessicaanne010]

Currently, her brain fog is very much improved. Since a year ago, she's been on the honor roll twice and is able to do her homework with none of my assistance. I'm hoping that the same will happen for your daughter. I know how frustrating it can be for your child and for you to watch her struggle. I pray that you'll be able to find ways to help her succeed and to enjoy reading.

Thank you Brenda, she does enjoy reading, which is why it's so important to me to figure this out before she starts to hate it.

I have an update, I finally talked to her regular eye doc - he did not do any testing for Visual Processing Disorder. So, I've called my oldest daughter's Ophthalmologist, he can test her for Visual Processing Disorder, Dyslexia and a few other things that the nurse didn't tell me specifically. She has an appt in a month. :-) I'm thrilled, we will start getting answers and we should have a bunch of answers in one stop, which is a good thing because all of the specialists are an hour away from our house and we are on a very limited income for all this gas money.