Dysautonomia
We met with the neuro's PA today. Obviously she cannot diagnose, but she has dysautonomia herself and said that all of Paige's symptoms fit, along with her prematurity. She did strongly suggest that we get a 2nd opinion with a different cardiologist. She would like Paige to, at the very least, have a Holter monitor. She did mention that another option would be for Paige to wear an event recorder, which would be worn for a longer period of time in order to increase the chances that it would catch some activity.
She said that most kids grow out of it by the time they are finished with puberty or into their early 20's.
As far as medicine goes... since Paige is not passing out or falling, we can hold off on medicine. Obviously this may change if any cardiac issues are involved. She also felt that there is no reason to push for a tilt table test if the cardiologist doesn't see a need for it. She said... "if it looks like a duck, and sounds like a duck... let's call it a duck."
I found myself reflecting on the discussion under the previous post. Could we have skipped this appointment and continued to play the "wait and see" game. Yep. Do we need to do anything different in Paige's life? Nope.
Could I have relaxed if I would have waited? Nope.
Do I feel at ease now, confident that the diagnosis is correct? Nope.
I have this constant nagging, gut twisting feeling that I am going to be under-responsive to something and Paige is going to suffer because I didn't act quick enough.
Why is this?
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I was just wondering whether I would ever feel like I could relax when our 31 weeker is sick on my own blog. After what we went through in her first year or so, I know I worry over her lungs, her GI issues, etc, way more than I would worry for the same symptoms in my other kids. When she throws up, I worry about an obstruction, when she has a cough, I worry she'll desat and brady down while she's sleeping.
With everything you guys have been through, I totally understand why you would worry and feel the way you do. We've been through far less, and I still feel that way sometimes.
-Kristie
Stacy-
I understand the way you feel. I have always felt, since Daniel was born that I was constantly battling to keep him alive. It’s my job, as his mother; to do everything I can to keep him healthy but honestly, it has grown into something beyond my control. The truth is that I would feel guilty if something happens to him that maybe I could have prevented. It is absurd to try to take responsibility for things beyond my control. I do not hold others to that level of responsibility that I take upon myself. I guess that would make me seem to have delusions of grandeur. But the bottom line is that I have Post Traumatic Stress Disorder and the classic symptom of hyperviligance. I know the diagnosis, but that doesn’t make it any easier. I love my son so much and the thought of losing him is unbearable and therefore I give into the hyperviligance to try to prevent bad things from happening to him. Most would say it’s a lack of faith in God or inability to accept his plan but I say it’s just a mother’s love. So with that being said, I want to answer your question. The preemie experiment said, “I have this constant nagging, gut twisting feeling that I am going to be under-responsive to something and Paige is going to suffer because I didn’t act quick enough. Why is this?” Because you love your child immensely.
-Tammy
Stacy-
I understand the way you feel. I have always felt, since Daniel was born that I was constantly battling to keep him alive. It’s my job, as his mother; to do everything I can to keep him healthy but honestly, it has grown into something beyond my control. The truth is that I would feel guilty if something happens to him that maybe I could have prevented. It is absurd to try to take responsibility for things beyond my control. I do not hold others to that level of responsibility that I take upon myself. I guess that would make me seem to have delusions of grandeur. But the bottom line is that I have Post Traumatic Stress Disorder and the classic symptom of hyperviligance. I know the diagnosis, but that doesn’t make it any easier. I love my son so much and the thought of losing him is unbearable and therefore I give into the hyperviligance to try to prevent bad things from happening to him. Most would say it’s a lack of faith in God or inability to accept his plan but I say it’s just a mother’s love. So with that being said, I want to answer your question. The preemie experiment said, “I have this constant nagging, gut twisting feeling that I am going to be under-responsive to something and Paige is going to suffer because I didn’t act quick enough. Why is this?” Because you love your child immensely.
-Tammy
I would feel the exact same way. Without definitive test results, I'd always have a nagging feeling.
Maybe I would've been that kind of mother anyway, because of my personality, but my preemie PTSD has sealed the deal.
I don't know much about the test, so here's MY question: if the test to verify that it's definitely a duck is something that doesn't hurt Paige, the doctor's willing to do, and the insurance will cover, why not? Your peace of mind is important, too.
You know the old saying doctors throw around about how if you hear hoofbeats, don't look for zebras? You've been living in the middle of a zebra herd for years. I think your reaction is completely understandable (and even rational!) given what you've been through.
Hi Stacy,
If Paiges symptoms are intermittent, it's really a crap shoot whether a Holter monitor will "catch" one - and of course a clear Holter monitor test stacks the 'evidence' in the cardiologists mind that there isn't any sort of underlying issue (not saying there is ) but if you would feel more comfortable if they ran a comprehensive set of tests, getting a clean echo, and a clean Holter would make them disinclined to look further. An event monitor would be more likely to show something (if something indeed was happening with her heart). I only mention these things because as you know, I'm the opposite - I want the shortest path to the exit door of any MD so I chose the Holter over the event monitor knowing that it was unlikely that 24 hours would show anything serious, because I knew we were starting the test at a time of rest and relaxation for Ali and she's already been excluded from the running program at school.
It didn't work exactly as I hoped (it did show her sinus arrythmia and tachycardia, but the cardiologist was cool with allowing these findings to be placed in the normal abnormal finding category).
I've never heard of dysautonomia - I hope it is nothing serious.
sheila
I can completely relate to that nagging feeling that something isn't quite right (and will never be). As for the testing. I would go for the event monitor for Paige. It is a bit more annoying because you have to wear it for about a month but since it is attached all the time, you are much more likely to catch events than with a 24 hour Holter. The event monitor is also a bit more work. I did one last fall for my sinus tachycardia and it was a pain in the butt but worth it to get accurate results. Since you wear the monitor all the time, you push the record button on the monitor when an episode is happening and it will catch it. The number of episodes the monitor can hold before you have to download it over the phone depends on the brand but they work very well.
I would complete the event monitor and then decide if there is enough info from those results to suffice. If not, then push for the tilt test to ease your mind that they have the absolute correct diagnosis for Paige. She is afterall, your baby and your number one priority. You (and DH) are who need to be comfortable with her care and diagnostics as you well know. ((((((HUGS)))) for going through yet another step of this micropreemie journey.
I agree with Kathy---that it may be worth while getting a confirmed diagnosis, if you think it might make you less anxious. If you feel intuitively that the verdict is correct and that additional tests would not lessen your anxiety (0r improve Paige's outcome) then don't bother.
That said, I'm reading Jerome Groopman's book, How Doctor's Think and he has some very strong arguments against the "If its a duck" arguments as well as the tendency to see only horses, but not zebras. Too rapid a diagnosis, without considering rare alternatively can be a mistake. This is rare and it is easier to jump at the proximate diagnosis, but it may not be the correct one.
I'm not doubting your instincts, but you may want to be sure you have the correct diagnosis.
I'm thinking of you Stacy.
PE said: I have this constant nagging, gut twisting feeling that I am going to be under-responsive to something and Paige is going to suffer because I didn't act quick enough.
Why is this, you ask? Because no one has EVER been able to give us answers as to what preemie syndrome is all about. .we've been told to take them home and treat them like a normal baby - when obviously they are NOT. .we are blamed for the issues that DO arise. .we are negated for the things we DO see in our kids. .
Of COURSE this is going to create anxiety in our parenting of these unique little people. Because they are unique little people. And, the people that are suppose to know how to help us, can't, won't for don't for whatever reason.
We are doing the best we can, with the very limited resources available.
Don't beat yourself up, Stacy.
To Stacy:
I agree with Terri w/2 -- don't beat yourself up!!! I know this isn't going to make the bad feelings you have disappear magically right now, but if you keep repeating it to yourself and if you keep hearing it from the rest us us, maybe, in time...
I would say more, but I'm afraid to do any online reserach on dysautonomia or anything else at the moment. I'm currently a juror in a case, the nature of which I cannot mention, but I, along with the other jurors, have been forbidden to seek out any such information while the trial is in progress.
Meanwhile, my heart goes out to you. I will speak more freely when I can (about two weeks).
Stacy, the good news is that you are hypervigilant. You "know" some things are not-right. You make an effort to discover what and why.
The bad news is that you are hypervigilant. Maybe you could have done more, sooner, you tell yourself--all you'd have to do is give up sleep and cooking and cleaning and all your hobbies and interests--that is why you feel bad.
So you can feel good about being hypervigilant, or bad about it--or good and bad by turns. Your heart is divided, and you cannot find the balance point between too much and too little watchfulness, doubt, suspicions.
Nor can any of us. We win some. We lose some. We have periods of peace and stability with our kids. We have periods of struggling with the system.
Chris and Vic
Nor can any of us. We win some. We lose some. We have periods of peace and stability with our kids. We have periods of struggling with the system.
Chris gets the award for the most profound thing I've read all week about parenting atypical children.
Not surprising, she's about to need an addition built to her house to hold her previous such awards.
=S
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