What does this mean?

[Alison Whybro]

Please could someone help me. My 7 year old daughter has recently been for a check-up and I need some more clarification on what the specialist has told us.
Her problems:
Hypertrophic cardiomyopathy with subaortic stenosis - resection of subaortic bands and septal myectomy on 17/10/2000 at age 3.
Persistent moderate subaortic obstruction, septal hypertrophy, left atrial dialation and mitral regurgitation. Pseudo delta wave on ECG (previous negative EP study but during stress test this wave was very exagerated)

While the ECG was running, Anna said that her heart was going fast and this showed 'sinus rhythm' - What does this mean exactly?
Her ECG also showed left ventricular hypertrophy with a strain pattern with inverted ST ad T wave segments in the lateral V leads and inferiorly - What does this mean?
A recent Holter showed ST depression during tachycardia - what does this mean?
Her septal thickness is 1.5cm, posterior wall thickness of .8. Peak velocity through the left ventricualr outflow track is 3.3m/sec at the end of systole. Mitral regurgitation is moderate with significant left atrial dialation. Peak velocity is 6m/sec. Gradient of around 40mmHg across the left ventricular outflow tract. Mitral valve is abnormal in it's support structure - papillary muscle seemed to be a little rotated.

Last night my daughter had one of her worst 'attacks' where her heart was racing fast and almost seemed to be jumping out of her chest. It was one of the worst episodes because it also caused her a lot of pain this time in the chest and she said that the pain was also going up the left side of neck (like I imagine an angina attack might be like?). It lasted about 2 or 3 minutes and then the pain gradually subsided. She couldn't bend forward without it hurting. It scared me, because this is the first time she has complained of having this much pain with a 'racing heart' episode. It happened while I was reading to her in bed, so she was resting.

I guess I am looking for reassurance - I feel a bit helpless and feel as if we should be doing something more. The cardiologist tells us to keep track of how many times she has a 'funny episode'.

How many more times does this have to happen before we need to follow up and what would happen next?

Our cardiologist is concerned about her developing atrial fibrillation - how do we deal with this progression?

Sorry for asking so many things - I guess the episode last night has got me going again and I am worried. Anna hasn't fainted or gone or blue or anything yet. We have noticed that her hands and feet are often very cold - more so than usual lately. Apart from all this, she is still an active little girl with loads of enthusiam for life - praise God!

Your opinions/thoughts/advice would be greatly appreciated.

Thanks everyone,
Alison (Mum of Anna)
Auckland, New Zealand

[Sarah]

Re: What does this mean?

Dear Alison,

I'm sorry your daughter is having a rough time of it.

Sinus rhythm is the fancy way of saying "normal." Sinus is for sine wave --the squiggly line you see on the ECG.

Tachycardia is a fast heart rate, over 100 beats per minute (bpm). Sinus tachycardia is when the rhythm is normal but the pulse is too fast.

Each part of the ECG is named for a letter --q, r, s, t waves. The S and T waves in HCM patients are often depressed and the T inverted --it means that the heart is not making a complete and proper contraction when it beats.

Regurgitation is backflow. Some blood is falling back into the heart instead of being forced out (b/c the heart isn't beating right and because the mitral valve isn't right).

I don't know pediatric guidelines but I've been told that if your heart rate is over 100 or you have chest pains for an extended period of time (20 min or so if really bad) then you should call the doctor or just go to the ER.

You can't prevent atrial fibrillation; only treat it if it shows up. This is done with medication and/or defibrillation (electric shock while you are under sedation).

Please email Lisa about pediatric HCM specialists in New Zealand. Talk to your doctor about her episodes and find out what constitutes an emergency and what is to be ridden out and logged.

I can only say that everything you mention is pretty standard for HCM except that she is so young and has already had a myectomy. So she needs much watching, and probably medication --you don't say if she is on anything. I would assume a beta-blocker to help with the tachycardia and episodes. Cold hands and feet are also standard fare for HCM.

I think seeing a better doctor and/or talking to this one more about treatment is going to help a lot.

take care,

Sarah

[Alison Whybro]

Re: What does this mean?

Dear Sarah,
Thank you so much for taking the time to answer my questions, it has helped me to understand better, what alll the medical jargon means and to know that what is happening is 'normal' for HCM sufferers. I forgot to mention that Anna takes Verapmil each day so she is on medication.
At the moment we are happy with Anna's care and her cardiologist is a competent professional but as parents, we would obviously take Anna anywhere in the world if we felt she was going to get better advice or treatment. When we see the cardiologist I guess I always hold back a bit with asking too many questions because I am conscious of not wanting to waste his time but that is something I need to get over- I know!
This forum is such a comforting place to come too because I know there are other people going through similar stuff who understand and really care.
Thanks again Sarah and I will let you know how Anna continues to get on
Kind regards,
Alison
Auckland, NZ

[Linda]

Re: What does this mean?

Alison, I'm sorry your little one is having so many difficulties. As a parent, it is so difficult to sit by and watch your little one suffer. Try to talk to your doctor and find out what he is tracking and what plan he has to offer with the info you give him. I would definitely call him about the episode of pain if this is new for her. It sounds like more than a "funny episode". I'm sorry I can't offer you any real advice or help other than that, but it seems that he should be forming a plan for one so young with that many symptoms. Please keep us posted, best wishes, you will all be in our prayers. Linda

[Lisa Salberg]

Re: What does this mean?

Allison,
Step one... take a deep breath. Most of what you had written above is very common to an HCM heart. The measurements are not out of line with what one 'normally' sees in an HCM patient.

Her symptoms need to be discussed with her doctor. What meds is she one now?

I know you are scared, I am a mom too I understand, please do not panic. Lets take it one step at a time and we will help you help your daughter!

Lisa

[Sarah]

Re: What does this mean?

You are very welcome!

Verapamil does well for some people. Beta-blockers are more commonly used. If you don't see the verapamil helping, you may want to talk to the doctor about trying betablockers instead. Everyone is different and we all go through a lot of medication changes and tweaking.

Nursing textbooks are really helpful for learning the jargon and medical terms.

take care,

s

[Brownie]

Re: What does this mean?

Hi, Alison:

I hope Anna is feeling better. These new symptoms are so alarming when they first appear, however normal they may be to HCM. You are both in my prayers.

Keep us posted,
Abby