db2504 Posted March 18, 2015 Report Share Posted March 18, 2015 So we saw a new neurologist today and he was very thorough with his examination but when he checked my daughters vitals her heart rate only went up 24 points. He took into consideration she had taken her midodrine, but would not give a diagnosis of POTS. He needs to see her again unmedicated. He is not sure about the POTS diagnosis bc it usually comes from a virus, accident,or other trauma. He does not feel we r sure when it exactly started. So as of now he is calling it orthostatic intolerance but isn't POTS part of OI. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 18, 2015 Report Share Posted March 18, 2015 From what I understand OI is an umbrella term for several disorders including POTS and NCS as well as other related disorders. It sounds like he feels something is wrong with autonomic function. As you probably know the definition of POTS is a rise in hr of at least 30 bpm from prone to standing. In children I believe this minimum standard of bpm change is higher. It is harder to know what is going on if a med is being used that could be masking (addressing!) symptoms. Perhaps the specific diagnosis is not so important, so long as she is getting treatment that is appropriate and making her feel better. Hopefully (and most likely) she will improve with time. Quote Link to comment Share on other sites More sharing options...
db2504 Posted March 18, 2015 Author Report Share Posted March 18, 2015 Yes ur right the diagnosis isn't always necessary but it still makes u feel better when u know what is exactly going on. I feel like since she's been 7,doctor after doctor have been guessing or not really sure of what she had. Thks for ur response and kind words. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted March 19, 2015 Report Share Posted March 19, 2015 Hi DB,Katherine explained the Orthostatic Intolerance really well so I don't have anything to add to that, but I just wanted to let you know I'm thinking of you and your daughter. I know she has a classroom of children depending on her and she probably just wants to have a diagnosis so that she can get better. I felt that way for a very long time, but I wanted to share with you that the neurologist at the Cleveland Clinic mentioned that in 30% of cases (With a POTS diagnosis) that the cause is never found, so it doesn't change the treatment at all. Is this a new doctor or the previous neuro that you were frustrated with? I found these on Orthostatic Intolerance for you guys:http://www.ndrf.org/orthostat.htmhttp://www.dysautonomiasos.com/#!orthostatic-intolerance/c1iljTake good care of yourself, you are doing an amazing job helping your daughter! Sarah Quote Link to comment Share on other sites More sharing options...
db2504 Posted March 22, 2015 Author Report Share Posted March 22, 2015 Hi Sarah. This is a new neurologist that was highly referred from a member of the forum. We really liked him but we're disappointed that we didn't get a diagnosis. He does want to see my daughter again so I hope he can shed some light on her diagnosis. I'm just worried it could be something even more serious then POTS. Thanks for your kind words. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.