jessicaanne010

This is what I was thinking. We will have to have some talks about it. Thanks for the docs names, that helps. :-)

Thank you, the DINET site is a wonderful resource, I just want to make sure I'm not missing anything. :-) I will check out the article. Thanks! That is a good idea, I will suggest that to her. We really need to put a railing on those stairs.

Hello, I have to disagree a little with your doctor. Not all women who get pregnant right after the Depo shot wears off are forced to have an abortion or some other horrible thing. I got pregnant with Morgan the week I was supposed to go get my next shot. (Yes, I'm THAT fertile! LOL) I had a completely normal pregnancy and she is one of my healthier kids. My OBs never said anything about having an abortion or that she might be premature because of the shots and they knew that one had just worn off. Morgan was actually 8 days overdue. I totally agree with everything else she said though. The side effects can be awful. Constant depression that nothing helps, weight gain, mood swings, etc. I had all that too. I hope you find something that helps your symptoms!

Wow! That's quite a family history. I have been reading as much as I can since I found out. I've read everything at DYNAkids.org, dinet.org and a few other things here and there. What are your favorite websites for info and research? We homeschool so thankfully I don't have to worry about school issues. I was wondering if I should start limiting her activity. She doesn't limit herself, if she gets dizzy she just keeps going, I think she was thinking it was normal. For now, should I just teach her to listen to her body and when she starts getting dizzy to slow down or stop and rest for a second? The biggest thing that scares me right now is her going up our stairs, they are all wood and not carpeted. She says she gets dizzy at the top and she has already fallen down them once. I considered limiting how many times she goes up and down the stairs or maybe just trying to spread the trips out, make sure there is a decent rest time in between? What do you guys think? I don't want to baby her, but I have no idea where to draw these lines or if I even should.

With her clumsiness, I was wondering if it was due to her dizziness. I hadn't even thought about lack of coordination. That has to be so frustrating. Right now I'm really glad that we are home schooling, I think it's going to make everything so much easier. Thank you for the info, I really appreciate it! Jessica

My oldest daughter has Type 1 Diabetes and Hashimoto's. My 8yo, newly diagnosed with NCS, has had symptoms of Type 1 Diabetes in the past but resolved on their own. I think one of my mom's sisters had NCS, need to confirm. My mom has Pulmonary Fibrosis, I don't know if they have decided whether that is autoimmune or not, my grandmother passed from PF last June. My dad's sister has Reynaud's. My grandmother also suspected that she had celiac but couldn't find a doctor that would test her. I'm sure there are a few things I'm forgetting here. We are kind of an autoimmune stew pot.

Hello Everyone, I've just joined this forum yesterday. My 8yo daughter, Shayna, was diagnosed with NCS last Wednesday. I feel like I just fell through the looking glass. To begin with, I had no idea she was having any symptoms whatsoever. We went to her cardiologist last week for her annual check up on her PFO (Patent Foramen Ovale). As usual he started asking her if she was experiencing any dizziness, chest pains, rapid heart rate. She said yes to everything but the rapid heart rate. Then he asked her when she was getting dizzy - when she gets out of bed, goes up the stairs, stands for a long time, and sometimes just when she stands up from sitting. He also asked if she was allowed to put her own salt on her food. I told him I just told her about a month ago that she wasn't allowed to anymore because she was putting a ton of salt on her food. She has always been a clumsy child, from the time she was about 3. There have been a few times that she's fallen or almost fallen that I thought it was just because she was being silly. As a baby she was easily dehydrated, she was admitted once at about 9 months (mid-May) for 24 hours for fluids - took more people than i can remember trying to get an iv in her. :-( We went again a few months later, didn't admit her that time, just did IV fluids in the ER for a few hours and she was fine. She's had trouble concentrating for about a year now. We'd been using virtual schools at home, but last year she really had a lot of trouble getting the work done, like she wasn't motivated to do it. We went back to regular home schooling in the middle of last year so that we didn't have to live up to anyone else's dead lines. That relieved a lot of tension and stress. Does this all sound common for someone with NCS? I never really thought any of these things were connected until I started reading about NCS and dysautonomia. As for the rest of my girls - my 15yo DD has Type 1 Diabetes and Hashimoto's, my 11yo DD seems to be ok, Shayna (8) has the PFO and has almost been diagnosed with Type 1 diabetes twice (she throws random high blood sugars with and without ketones) and my 17mo DD seems to be ok too. Yes, they are ALL girls! lol At Shayna's appointment all her cardio told me was to make sure she drank plenty of water and let her have as much salt as she wanted. He didn't even tell me that there was a diagnosis, just that it was coincidental to her PFO/had nothing to do with it. I called the next day to talk to the nurse, she told me that it was NCS, gave me the DYNAkids.org website and some other info. She did tell me it was a little unusual for an 8yo to be dx'd. From what it sounds like from reading other people's stories, younger children are presenting with the symptoms they are just being ignored or misdiagnosed until they start fainting when they are teens. At any rate, the doc said if we couldn't control her symptoms with diet that he would want to put her on meds. I know their favorite is a steroid. With her already having random high blood sugars and having autoimmune diseases in the family, the thought of giving her steroids scares the crap out of me. So, tell me, what can I expect? I understand there are a lot of varying degrees, but are there any commonalities? One of my aunt's used to faint a lot when she was a teen, I suspect she had NCS but grew out of it or figured out how to self medicate well enough. My mom said they never went to a doctor about it, it was just what Chris did. She was fairly active in high school too as far as I know. I keep meaning to e-mail her to ask her more about it, but that keeps slipping to the bottom of my To Do list. Also, Shayna's father and I are divorced, I've sent him all the websites that I've read. I keep wondering how this is going to work out with visitations. Anyone have any helpful hints there?