Appointment with pediatric cardiologist

[Brownie]

Hi everyone!

I have an appointment on Friday with my children's pediatric cardiologist to discuss their latest test results. My daughter has had her first echo since the one in July which found her HCM and my son, who was diagnosed in November, has had his first stress test. I want to be sure that I come away from the appointment knowing all the important information, so I need help knowing what questions I should ask. I know from my watching my daughter's echo that her septal measurement is 3.4cm, which is up from 3.3cm at diagnosis, but the difference could easily be attributed to variance in measurement rather than actual growth of the septum. I know this is a very big septum, and I am planning to ask our pc to refer both kids to Toronto for evaluation by a specialist. At my son's stress test I was watching to see what his blood pressure did, and I was relieved to see it rise as he ran. I know from what I have read on this site that this is a good thing, but since he is a very active and athletic boy, I need to know if everything responded positively. I'm hoping to get some guidelines to tell me how much activity is o.k.

Our entrance into the HCM club was very surprising, since no one had ever been diagnosed in either my family or my husband's, and since our daughter's echo was not ordered because she was showing symptoms of HCM, but rather to follow up on the VSD's she has had since birth. (Wouldn't you know it...just when we learn that the VSD's are history she gets diagnosed with HCM! ) In retrospect, though, I would have to say that she did have occasional symptoms over the last 5 or 6 years, but nothing that anyone diagnosed.

Thanks for your input.

Abby

[Alison Whybro]

Re: Appointment with pediatric cardiologist

Hi Abby,
How did your appointments go with your children's cardiologist?
My 7 year old daughter has HCM, we found out when she was two years old. She had her first surgery at 3 years. Her next check-up/tests and appointment with the cardiologist is on March 15th. I find that my stress/worry levels highten when I know there is a visit to the hospital coming up. Just wanted you to know that there are lots of families around the world who are in a similar situation to you and that we are all here to support, learn and listen to one another.
This is a fantastic support group and it has been a great comfort to me knowing that there are other people out there who understand and relate to what my family is going through. I'm sure you will find the same.
Keep in touch!
Regards,
Alison Whybro
Auckland, NZ

[Brownie]

Re: Appointment with pediatric cardiologist

Hi Alison!

Thanks for your post. You're right - it is comforting somehow to know that we are not alone in this. I have gained so much knowledge about HCM from this site, and from this BB in particular. (By the way, everyone, our PC was impressed by how much I have learned about HCM, and what I have learned is largely due to all of you. Many thanks.)

Our appointment went really well. We spent almost an hour discussing the test results and the treatment possibilities which lie ahead. Although the tests showed no significant change with our daughter's heart, (we did learn that she has "mild" obstruction) and everything tested normal with our son's stress test, it was good to know things were ok, rather than just assume that they were ok since we hadn't heard anything. Our PC has been conferring with other cardiologist with more experience dealing with HCM, and the general concensus is that an ICD may be ahead for our daughter, but so far no one has said that it must be done soon.
For our son, whose septum is just a wee bit hypertrophic (1.0 cm) there is less of a sense of urgency to do something. We still have to watch his activity level, which is challenging, since he is a 6 year old who never walks, but runs, and who loves sports, especially soccer. He'll go back for another echo in the Fall.
We have two other children who have tested clear of HCM so far, but their septums are at the high end of normal, so I do wonder if they are also heading toward an HCM diagnosis in the future. I guess that short of genetic testing, all we can do is watch and wait.
Our PC will be making the referral to Toronto for us, but I don't know yet when that will be. I'm anticipating a wait of a couple of months, which is pretty standard here in Canada. I'll be sure to post when we know when we are going.
I'll be thinking of you on March 15, and praying for good results for your daughter.

Take care,

Abby

[Linda]

Re: Appointment with pediatric cardiologist

Abby, Thanks for the update. I'm glad you have the checkup in Toronto. Please keep us posted. How old is your daughter? Linda

[Brownie]

Re: Appointment with pediatric cardiologist

Linda,

She's 12 (13 in May). An interesting coincidence which may or may not have significance - my husband says not- is that all three in our family with HCM (two kids and my husband) are all May babies. The three of us who are clear of HCM are all Fall babies. I've heard of studies done which indicate a genetic predisposition to acquiring certain diseases based on the month in which you were born, but I tend to take it with a grain of salt, since stats can be made to say just about anything depending on how they are manipulated and presented. Has anyone ever looked for something like this with HCM?

Abby

[Linda]

Re: Appointment with pediatric cardiologist

Abby, Never heard of that one, not till you . But, I have 2, the Spring baby is affected and not the Fall baby. Of course, I shouldn't refer to them as babies anymore. Linda

[Brownie]

Re: Appointment with pediatric cardiologist

Hi everyone,

Our daughter has begun to experience some symptoms which are new to her, and so is wearing an event monitor for 30 days. Although she is usually very articulate, she has a hard time describing these symptoms to us. One evening she felt her heart was doing "something funny" but not the fluttery butterfly feeling we have talked about, and another day at school at recess she felt "light headed, well not really light headed, kind of like a head rush feeling". Can anyone help a non HCMer understand what these might be?
Thanks,

Abby

p.s. Alison, I have pm'd you.

[Reenie]

Re: Appointment with pediatric cardiologist

Abby, I wish I knew an answer for you, but you are on the right track by having her wear the event monitor. I hope you figure it out soon. I know how difficult it is when you can't help your kids feel better.

Reenie

[Lisa Salberg]

Re: Appointment with pediatric cardiologist

Abby,
with your daughter's septal measurement she is with in an a definition of a mass hypertrophy, therefore she has one risk factor for the sudden death and this is something that may be significant to her future care. At the age of 12 it is hard to make the call to implant defibrillator for some physicians as your daughter has much growing to do and the earlier defibrillator is implant the greater need for more devices over her lifetime. Is there any history of sudden death within your husband's family under the age 50? Have you documented any arrhythmias in your doctor? How did she do on a stress test? And how does she feel about the possibility of having a device implant?

I know this is very difficult topic for any parent to have to deal with and I'm very glad that you have found this web site and message board helpful in your understanding of this disease.

Best wishes,
Lisa

[Brownie]

Re: Appointment with pediatric cardiologist

Lisa,

As far as we know there is no history of sudden death on either side of the family. There have been a few heart related deaths, but none that was attributed to HCM. So far others in our extended family (some adults and some children) who have had echos done have tested clear of HCM. I understand what you are saying about a general reluctance to implant an ICD in growing children, but I recognize that it may sometimes be necessary. When our PC mentioned it he said that he would want to discuss it with our daughter to know how she felt about it if it should ever become necessary. Also, although she is not yet 13, she is already looking me in the eye and sharing my clothes, so she is essentially adult size, though probably not done growing as her feet are 2 sizes larger than mine.
The PC indicated the results of her stress test were fine. She wasn't able to go for very long, but everything responded appropriately while she was being tested. We don't have any documented arrhythmias, but she did have an episode of tach about 6 years ago which sent us to the ER, but no one thought to record what was going on, they just concentrated on stopping it. Following that episode our PC provided us with a letter to take to the ER if it ever happened again instructing them to take her in immediately and get a record of it, but it didn't happen again. Hopefully her event monitor will record something, and we'll be able to identify it either as something benign (which I am hoping for) or otherwise. She has mentioned one brief episode of something similar to what she had felt before, but mostly her heart seems to be behaving.
Our daughter, Olivia, is very much like her dad when it comes to dealing with HCM: they really don't like to discuss it much. I have mentioned the possibility of an ICD to her, but I haven't gotten any feedback. Since it isn't an immediate possibility I'm not pushing her for a response. Should it ever become necessary at least she has had more time to consider it, rather than to be blindsided by the need for it at a later date. Like all of you, we continue to take it one day at a time.

Have a great day, everyone.

Abby

[mtlieb]

Re: Appointment with pediatric cardiologist

Abby,

I don't have any real advice for you, i'm sorry. When it comes to the actual nuts and bolts of the disease, Lisa is admittedly the most informed amongst us.

In your earlier post, you mentioned the 'head rush' feeling that your daughter sometimes gets. We have all gotten those from time to time, and as a teenager, i usually reacted with "Hey man, i just got a headrush... cool!" LOL. What a dork, huh?

What i've come to understand is that this is caused by the low blood pressure and decreased pumping capacity that usually accompanies HCM. You get up or stand up a little too fast, and your HCM heart simply doesn't get the blood flowing fast enough to your head. Quite often you see stars as well (or fireflies as i like to describe them) because the eyes are temporarily restricted in blood flow.

I think it's a pretty normal occurence with HCM.

You take care,

Jim

[Brownie]

Re: Appointment with pediatric cardiologist

Thanks for your input, Jim.

One of my greatest frustrations in trying to help my family members deal with HCM is that I have no personal experience with HCM. They can describe their symptoms to me, but I can't be sure I really understand what they are experiencing. It's kind of like trying to understand what a banana tastes like based on how someone describes the taste. Additionally, since we're so new to HCM, I find it hard to know if a symptom is truly an HCM symptom or a parallel symptom of something else totally unrelated. For example, when I pick the kids up at school at the end of the day, and Olivia tells me that she is tired, I can't be sure if it's because she's experiencing typical teen tiredness or because of her HCM. I don't want to think the sky is falling everytime she tells me about something new, but I don't want to dismiss something that is an important symptom as something insignificant. This board has expanded my understanding of HCM tremendously, but still, I have no personal experience with the symptoms people describe, so I can't be sure I fully understand how something feels, (or how the banana tastes).

And Reenie, you're right. As much as I want to make everyone better, I'm very limited in what I can do for them, which I find incredibly hard. My nature is to be a "fixer", and I can't fix this for them.

Maybe my son's attitude is a good one. He has said to me, "I'm not sick, there's just something wrong with my heart."

Cheers, all.

Abby