jessicaanne010

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.

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.

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. :-/

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).

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.

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

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.

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

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

Not to be completely depressing, but my mom is status quo. There is no improving or getting better from PF, the only thing in question is how fast one declines. She was steady with fairly low loss of function in her one lung, but it has started to loose more function again, still not quickly, but she will never be the same nor will she recover. Thank you for your thoughts though, I appreciate it.

Jeff, I don't know what the stats are on that. But I just watched my grandmother die from Pulmonary Fibrosis a little over a year ago, my mother was diagnosed with it a little before my grandmother passed. You don't want to go there. :-( For my mom, she luckily still has the full use of one lung, and 60-70% use of the other lung, but she's already been on Oxygen for over a year and has had to alter her life style. She can't have a conversation without her oxygen on, she will get confused, weak and dizzy. It's not a pretty way to go.

We don't have a bp cuff, but I've been thinking about getting one. I will keep this in mind, I took the Pulse Ox meter off after a minute because I was freaked. Obviously, I would have gotten a lot more information if I'd left it on. Thank you for the info.