Jump to content
Search In
  • More options...
Find results that contain...
Find results in...
bebe127

Need Some Advice About Daughter

Recommended Posts

Hey all,

Hope all of you are as symptom free as possible today.

I'll try to make this short (as if that is possible for me :) ) I have a teenage daughter who was dx. with VSD and a PFO since she was a child (VSD when she was an infant and PFO when she was about 5). We've been seeing a cardio over the last ten years for sonograms and whatnot. We used to go every 2 years for a follow up and the last time we were in we were told we could extend it to every three years. We currently have an appt tomorrow.

My daughter as of late has been experiencing tachycardia and general malaise. It really started around the time of puberty (when she was about 13), but has since increased in frequency. For example she will be in the shower and when she is done, she makes a beeline for her bed and calls me in to tell me she doesn't feel well, her heart is racing and she feels like she is going to faint. She has also experienced tingling in her hands and arms. The way she describes her heart at varying times is: fluttering, fast heart rate, heart feeling like it is beating slow and really hard (pounding feeling). She was even out with friends fishing this weekend and she felt her heart racing, she took her pulse and it was 120. She told me that she was alternating between sitting and standing, she was in the shade for the most part and was drinking. I even did a poor man's TTT on her where her hr increased from 70's to 114 within three minutes of standing. Obviously something is going on.

Here's where I need the advice. We are going in for her cardio appt. tomorrow and of course we will be bringing this up with her dr. My question is: Do I tell the dr. right off that I have been dx. with "probably POTS" and I experience the same things or do I just tell the dr. what my daughter has been experiencing and let her determine what is going on? I hate the feeling that my daughter might have this dreaded illness too. I don't know if this dr. has any knowledge about POTS, I can only assume that she would since she is a pediatric cardiologist. What to do...what to do...

Any advice would be appreciated. Thanks in advance.

Be well,

Bebe

Share this post


Link to post
Share on other sites

Sorry to hear that Bebe. If it were me, I would definitely tell the doctor and tell them you want a tilt table test for her so they can try to get it under control before it goes spiraling out of control. Keep us posted.

Share this post


Link to post
Share on other sites

LOL! Hope!! I'm just not sure if I should tell dr. of my dx. because I kinda want her to figure it out on her own, if that is the case. If I see the appt. going south I will surely step in and ask the necessary questions and request the necessary tests. We've been waiting for this appt. since last fall. Been cancelled twice, but so far, everything is on track for tomorrow. Hopefully, we'll get some answers. If anything I want them to do an event monitor at the very least. I'll keep you posted! Positive thoughts :)

Share this post


Link to post
Share on other sites
Guest Alex

Bueller here.... :D:D:D you're funny!

I'm really sorry to hear your daughter is experiencing such problems, and I am by no means trying to downplay this, but maybe ...

Is she staying properly hydrated (some teenagers tend to prefer carbonated drinks for some reason, not saying that is your daughter's case)? Are those showers she is taking maybe too hot? Can it be that she is experiencing some hormonal changes due to puberty? A friend of mine had similar problems with her daughter but they went away shortly after her period started.

If I were you I wouldn't mention any prior dx to the dr unless - like you said things go south. After all you're trying to make the best out of this appointment.

Best of luck to both of you tomorrow, and please do keep us posted.

Hugs,

Alex

Share this post


Link to post
Share on other sites

My son is 12 and has been experiencing some heart rate/blood pressure changes, feeling faint, seeing colors when he stands etc for about a year- right when he started hitting puberty full on. I talked to Dr Goodman at Mayo about it and have let his pediatrician know our family history since the kids have other needs and we have an appointment to see Dr Goodman with my son in August.

Given her other cardiac issues, I would mention the symptoms to the cardiologist for sure at the appointment and then maybe casually mention that POTS is a consideration for yourself if there seems to be an opening in the conversation.

Best of luck to you and I hope that she feels better and the appointment is helpful.

Share this post


Link to post
Share on other sites

Thanks for your responses!! By the Beuller reference...I now know your roundabout age :D !! I must say, the 80's rocked!!

She started her cycle around the age of 13 or so, she is now 16 (she'd kill me if she knew I was discussing this!). During the last three years she has started having symptoms. Although, she is the type to keep it to herself, lest she miss out on any fun activities with friends! However, recently she started seeing marked frequency in symptoms. I took her to her pediatrician this past fall and they did and EKG in office that turned out fine, although we all know that we can experience things during different times, like a car that goes in for the incessant ticking noise that invariably stops when the car is taken in. It was about time for her regular cardio visit at the time, although they have called twice to cancel. So...we've been trying to get in since Oct. of last year. Mind you, she really didn't start experiencing marked frequency in symptoms until just recently.

Alex, we only allow carbonated drinks on the weekend, so she averages about 2-3 per week, although I don't know what she does when she is not in my ever-nagging presence. We've discussed with her the need for her to keep hydrated and I'm forever sending off for the weekend with friends with water and gatorade in her bag. She is completely aware of my situation and of course, dosen't want "what mommy" has. She hit puberty, I'd say 3-4 years ago and has had regular cycles since then (again with the nagging mom). She is now conscious of her heart rate and checks it, but I don't want her to become a worrier (like me) although she does seem to take it in stride. I'm just worried because the last two episodes, she has been in tears asking me to call her father to see if he thinks we should take her to the ER. We try to comfort her and have her try to relax and drink gatorade and she seems to feel better after a while. Judging from my experiences with the ER, at times they might do more harm than good, especially if the dr.s aren't well versed in POTS.

Azmusiclover, we will definately let her cardio know of the symptoms, but I think I'll keep my condition under wraps unless the appt. starts going south, then I will "pounce".

I just so hope that she doesn't have dysautonomia...she so hopes that she doesn't (since she's seen the brunt of it with me for the past four years). She's a trooper though. Hoping that all goes well at the appt. tomorrow. Will keep you all up to date.

Thanks so much for your insight and encouragement, it means the world to me :)

Be well,

Bebe

Share this post


Link to post
Share on other sites

Good luck to you and your daughter, Bebe.

I would make sure you mentioned something before the end of the appointment but can understand waiting to see what the doctor says first.

Share this post


Link to post
Share on other sites

Bebe, Really hope all goes well tomarrow. I truly admire all you parents out there dealing with a chronically sick child. God bless you all.

Share this post


Link to post
Share on other sites

Well, we literally just got back from the cardio. Our appt. was at 5pm and we didn't get finished until 10pm! I am reeling from what the doctor told us. She said that my daughter still has the VSD and PFO. My daughter mentioned the symptoms she has been having and the dr. automatically told us she has Dysautonomia, although she called it something else. The dr. told her that it wasn't serious, that many times it runs in families (at that point I told the dr. that I had been dx. a few years ago) and that many times they see it in my daughter's age group.

What came next is what really scared me, although I'm trying to think positively. She mentioned some kind of pulmonary something or other (I was in a fog at this point). They were scanning my daughter and they were saying that instead of the blood going from the left chamber into the right, it was at times going the opposite way and they couldn't get a reading. She said they couldn't see it very well on the scan. She set my daughter up with a holter monitor (24 hour) and when we get back in town she is going to put her on a 30 day event monitor. The dr. told us that what she was seeing was "very strange" and that she was going to take her findings to a cardiac conference next week. She wants us to take my daughter to the Children's Hospital here and have them do scans and a possible MRI. If they still can't see why this is happening, they will have to do some kind of esophageal (sp?) scope to look at her heart from above. She did try to calm us by saying that my daughter doesn't show the normal signs for this pulmonary thing, but she wants to be absolutely sure. What she thinks is happening is that a muscle bundle down by the VSD is clogging up the hole and causing the blood to go back the other way (the way it is not supposed to go).

Needless to say, my daughter was in tears and is worried. Please pray that it is just the muscle bundle thing. I'm probably not making too much sense, I can't remember half of what the dr. said. Luckily my husband was with us.

Thanks,

Be well,

Bebe

Share this post


Link to post
Share on other sites

BTW, I was surprised at the fact that they even took her bp lying down and then standing because of the symptoms my daughter had listed on the paper (the very paper I thought no dr. ever reads!) My own dr.s have never even done this with me. I really like this dr. and trust her, just by the sheer amount of time she spent with us, which was about 2 hours total, has got to say something!

I might seem helpless at times, but I shall never be hopeless :) Trying my best to keep my chin up for my dear daughter's sake.

Thanks for listening...

Share this post


Link to post
Share on other sites

Bebe, my thoughts and prayers are with you. Sounds scary, but at least you are getting treatment and care for her right away. The fact that you have a good Dr will help get you through. Take care of your self also. Know that you will have so many here that are sending positive thoughts and prayers your way.

Share this post


Link to post
Share on other sites
Guest Alex

Bebe,

sorry for the unexpected news from the dr, but hey, think on the bright side - you and your daughter have found a good dr so I'm sure that both of you will be able to get the right treatment with her help, and soon.

Please keep us posted, and know you can always count on us...at least for moral support.

Take good care of yourself and stay strong for your daughter.

You're in my thoughts and prayers.

Gentle hugs,

Alex

Share this post


Link to post
Share on other sites

Thank you Alex. Yes, she is a great dr., we've been seeing her since my daughter was 3 years old. I feel as though I'm in good hands.

Thanks for all your support and encouragement, it means the world to me.

Be well!

Share this post


Link to post
Share on other sites

Hi bebe,

Prayers and best wishes for you and your daughter. If it helps think about it this way - she already had what she had before yesterday but now they (almost) know what it is so they can make it better.

Share this post


Link to post
Share on other sites

Bebe,

Sorry to hear this about your daughter. But her doctor sounds awesome and sounds like they are going to get to the bottom of it. Hugs for both of you.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...