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.

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.

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. :-/

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).

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.

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.

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.

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.

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

Jessica - I know Pulmonary Fibrosis is very serious, so I'm also looking at a local company's product, Holy Smoke, which is made with spices rather than bagasse. It's a very small company though, so it doesn't have an online identity yet.. I'm very sorry to hear about your grandmother and mother. I hope your mom's doing well now!

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.

You see, I don't know what negative effects this is going to have on me, that is why I haven't tried it since then. The herbal shisha is made out of Sugar Cane Bagasse, which is linked to Bagassosis, or Pulmonary Fibrosis, which scares the ever living poo out of me (I wish.. lol). The regular shisha tobacco contains, well, tobacco. If that were to have less health effects, I'd be willing to try it, but my fiance doesn't approve of that idea anyway.

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.

Jessica, before you get too concerned, transient tachycardia (temporary high heart rate) is a normal response to upright posture, it should slow down within one minute. If her HR remained high, then it would a dysautonomic response. If you are really concerned, do it again with a blood pressure cuff and a HR monitor.

Vandy uses this protocol for POTS dx:

HR and BP lying down for 15-30 min

HR and BP at one minute after standing

HR and BP at three minutes standing

HR and BP at 5 minutes standing

HR and BP at 10 minutes standing

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.

My understanding is that NCS MUST include a drop in BP upon standing (hypotension) and, more importantly, must include syncope. A 30+ rise in HR upon standing, without syncope, is more indicative of POTS. But many people either have both or don't differentiate too much between postural NCS symptoms and POTS symptoms, if they have both. Does your daughter faint frequently?

We went to my daughter's cardiologist at the beginning of December for a recheck on her PFO (Patent Foramen Ovale). After her echo and all that he was asking her if she ever felt dizzy, if she ever had chest pains and if she ever felt her heart racing. She answered yes to the dizziness and chest pains, but no to the heart racing. She has never fainted as far as I know. I didn't know anything about the dizziness and chest pains though either. :-/ I've been journaling her symptoms and food/liquid intake since that appt (looking for correlations and improvement with increased salt and water). She experiences dizziness 3-6 times a day which are occasionally accompanied by chest pains, those usually only occur after a lot of exercise or if she hasn't been drinking as much water. Since we upped her salt she's also had heartburn a few times and had a headache a week or so ago.

We go back to see the Cardio on the 7th and I got an appt with another Ped Cardio for a 2nd opinion.

Thanks to all of you for helping me sort out the difference between the two.

Jessica

We were visiting with my mom last weekend for the holiday. She'd just gotten herself a Pulse Ox meter (she has pulmonary fibrosis) and I wanted to check out my daughter's pulse while laying and then upon standing. I know, nothing exactly scientific, I just wanted to see if there was anything to see. So, she'd been laying on the couch with my mom for about 20-30 minutes, I put the Pulse Ox thing on her and her pulse was 74-ish and her Ox Sat was 99. I had her stand up and her pulse immediately started to climb, it got up to 101 (within a minute?) before I let her sit back down. Her Ox Sat only dropped to about 96 or 97, I wasn't really paying attention to that number because I was so shocked at how quickly her pulse rose. Is that normal for NCS? (She was only dx'd at the beginning of December, so I'm still getting used to all of this.)

Can someone please give me a clear list of the similarities and differences between NCS and POTS? I keep getting confused.

Thanks!

Jessica

It could well be a trigger. I wonder if there are any studies on the onset of autoimmune illnesses or hypermethylation of genes post immunisation?

I don't have any links on hand, but if you do a search I'm sure you will come up with some studies that back that up. The package insert for the MMR vaccine lists Type 1 Diabetes as a possible adverse reaction. Type 1 Diabetes is autoimmune.

Jessica

Sorry, I haven't had a chance to reply to the last few posts on this thread. Life is moving at the speed of light. Jeez!

You guys have all given me a lot of great suggestions and things to keep in mind. I'm starting a notebook.

I looked at a catalog for a durable medical equipment store today and couldn't find any compression hose quite small enough. I know that doesn't mean they don't exist, I was thinking of calling them to see if they know of any places that specialize in children's sizes.

I will ask the doctor about tilting her bed.

Thank you all again.

I know that when my mother is too strict with things, I just dont tell her. Also if she is annoyingly worrisome, I also dont. Though this maybe isnt the best thing to do, and I know that and try not to, it is how the human mind, or child/teenager mind, works. Just something to remember. It is very important to protect your daughter and make sure she is safe, that is more important, but the above is just something to be aware of and keep in the back of your mind.

Thank you Mary, it is always good to be reminded how children/teenagers minds work. :-) I also have a 15 year old daughter with Type 1 Diabetes. I know there are times when she is resistent when I am worrying a lot. lol I try not to be the annoyingly worrisome mom, but that is my job, it's hard not to.

having an adult to keep an eye on her is the best thing to do, restricting her activities too strictly may encourage her not to report all her symptoms for fear of missing out on the fun stuff. One idea would be to give her a bag of crisps/salty snack and a large glass of cold squash/water before she goes out to play. Drinking cold fluids temporarily raises blood pressure so will give her more time to enjoy herself before feeling dizzy.

I was concerned that too much restriction would either encourage her to not report all of her symptoms or give her more opportunity to resent her condition. :-/

Good tip on the cold drink, I had no idea!

Thanks!

She also has to be in contact with herself and stop when she has symptoms.

Thank you.

This is what worries me most about her right now. If you ask her how she's feeling she'll say fine, but if you ask her has she been or is she dizzy then she say that she was and describe it. I keep reminding her that she needs to listen to her body and tell someone if she's feeling dizzy.

Hello, my daughter Shayna is only having mild NCS symtpoms right now (dizziness and chest pains). She is going to her dad's house for the weekend today and she mentioned that one of their neighbors has a jungle gym with a slide and all that, lots of climbing. Is this something that she should avoid? Or should she just be supervised by an adult while she's climbing on it?

Thanks!

Jessica

Ok, thanks to you both. I was just curious.

My daughter is still newly dx'd. She just told me the other day that she'd had some heartburn, first time I believe. She had it again this morning. Is this a symptom of the NCS or is it from increasing the salt in her diet? Yes, I'm grasping at straws. :-) Just trying to figure out what our new normal is.

Thanks!

It retrains the autonomic system helps retain water and re teaches veins to constrict. As too Fludrocortisone, it is a mineral steroid not really the same.

And yes I was on that.

p.s. I meant search this here message board, the link is just an article.

I don't think Fludrocortisone really retrains or reteaches the body anything, if it did wouldn't the patient eventually be able to lower their dose and go off the med? It may help while you are taking it though, for sure. I just fear that the side effects for Shayna would be worse than the NCS might be.

and oooo, about your ps. :-) I was confused. Thanks!

I have NCS and OH ,orthostatic hypotenision. I have never heard of using steroids and and was tried on all the NCS meds, or so I thought.

Shayna's cardio said that if diet didn't work, he'd put her on Fludrocortisone, which is a steroid.

Thank you for the other suggestions, I will share them with my daughter.

I read the recommendation on tilting the bed a few times, how does that help? I would think that would encourage the blood to sit in the legs and feet?

I will also check out that other forum, thanks!

I would teach my daughter to respect her limits as she seems to feel her symptoms. It's one of the most important treatment for NCS. If she does not respect her limits then I would set some. The more she respects her limits the better prognosis she has, especially if it's genetic.

This is what I was thinking. We will have to have some talks about it.

Thanks for the docs names, that helps. :-)