Septal thickness

[SheliRenee]

Hi Everybody - I hope you are all doing well.

I was wondering if there was a general guide to how thick normal septums are in people. I understand how thick my son's is, but not knowing what might be considered normal doesn't allow me any comparison. Thanks in advance for any input.

Have a GREAT day!!!!

SheliRenee

[SharonBates]

Hi SheliRenne,
When the Anthony Bates Foundation does our heart screening events we use the ACC standard septal wall measurement of 1.0 cm as our guide to normal wall thickness. In our events we screen for HCM using echocardiograms by taking measurements of septal wall, LVOT, posterior wall thickness and left ventricular wall thickness. When we have abnormal measurements or abnormal findings from the echo we recommmend a full cardiac exam be performed. Particularly on septal wall measurements we have a guide: if a female (adolescent to adult) person has a septal wall measurement of 1.2 cm and above or a male (adolescent to adult) person has a septal wall measurement of 1.3 cm and above we recommend that a stress ECG (or EKG) be done to rule out HCM.

Of course, overall infants and small children have smaller hearts. Therefore, their septal wall measurements have a different standard. Maybe, Lisa or Sarah can direct you to that standard.

Also, Lisa has recently posted articles that show the comparison of LVW thickness and septal wall measurements. This is to rule out "athletes" heart compared to HCM. Good article, you might be able to find the thread if you search on 'Athletes' if you are interested.

Hope that helps some.

Sharon

[Lisa Salberg]

Be careful when attempting to "jugde" how "good or bad" your HCM is by using septal measurements...some people with mild thickness have rather significant symptoms and can be at risk for sudden death...others with thicker measurements can be much better symptomaticly...it is only those with MASS hypertrophy (3.0 or greater) that have any specific risk due to the measurements..and even this fact is still a bit unclear to some researchers.

Childrens "normal" measurements are a bit tricky..it is based on body mass, size, weight and age.

Lisa

[SheliRenee]

I understand that HCM affects everybody differently..... It just seems like every time we go to the pc that he always refers to how Keanu's septal thickness has/hasn't changed. I was just wondering what a "normal" septum in a 2-year-old might be. Reenie was with me when Keanu was having his echo on the 4th and I mentioned that it didn't look so bad to me. She told me that I could not base everything on how thick the septum was because there were other things that go along with it.... I don't remember what her words were, but something like the cells could be arranged differently, the plyability (can't think of a better word yet) of the muscle, etc....

Once we learned that Keanu had develped arrythmia (V-tach), I figured that was going to be the main problem that we needed to worry about....

[Reenie]

Right, I said that since the cell structure is jumbled up the electricity doesn't always flow like it should and that the muscle gets stiffer and less elastic when it's hypertrophied. Also, in the thick area sometimes the oxygen doesn't get the chance to get all the way through the muscle like it should. And if the thickness is near the mitral valve, which Keanu's is, that would cause the obstruction. When you get that, the blood has trouble leaving the ventricle because the muscle gets in the way. Does that make sense? But I don't have any data on what a normal septal measurement would be on a guy his size. Feel free to ask more questions if you have them though.

Reenie

[SheliRenee]

Questions, questions.... there are always questions Then...when you get answers to your questions....those bring up more questions (not to mention - STRESS) ..... It's a big loop that I feel like I'll never get on the outside of (ha ha). I just wish that Keanu could talk and tell me how he's feeling rather than me trying to interpret his actions. Day by day by day.....

[Reenie]

Take it slow and easy. He'll slow down when he needs to. He's not like a teen who pushes through it. Breathe.

[SheliRenee]

I know, but think about it... you're a mom.... you just can't help worrying about your kids in a normal situation.... let alone knowing that your child has a potentially fatal heart condition and all these thoughts like "I hope my 6-year-old doesn't startle him today" (adreneline rush is bad, right?) go through your head. I just worry that I don't know enough to protect him.... I guess I feel so helpless that he has this condition that is not normally found in newborns and to top it off he also has the more dangerous of the arrythmias..... I simply can't help it.... I worry every day that I will lose him..... Time for a self-pity party here.... sniff...

[Linda]

SheliRenee, You are so right about Moms, you worry every day, but some days, the worry really gets out of control. Talking ICD's nearly put me over the edge, because that's what said "This is really serious", could no longer deny or pretend. I don't know what I could possibly say to help you worry less, but I hope all the support you will be getting from everyone here, in addition to all the prayers (for the whole family) will help make the journey a little more bearable. I also did my share of worrying, and still do, about one brother agitating/teasing, etc. the other. I guess that's part of what makes them brothers. Hang in there, we're here for you. Linda

[mflanagn]

Hi SheliRenee,

I had to post to you because I've been there times 2! I understand very well your feelings. When my daughter was diagnosed 11 1/2 years ago, you can imigane there was no information around for me to understand what my daughter had. We went to the PC every month for a while, then every 3 months, then every 6 months. Everytime we went we were told nothing had changed, but she is growing so that was a good thing. I really didn't understand. It wasn't until she was 5 that we got the horrible news that "oh my" it is much worse and we need to do a catherertization to see how bad the obstruction was. Then it was immediate septal myectomy. But the point I'm trying to make is yeah everytime we went to the PC we were stressed and scared and worried what it all meant. I think you are ten times further ahead than I was when my daughter was first diagnosed because you have this group of people with all their experiences. I hope this gives you some reassurance that other people with kids have been there and understand. My son's diagnosis and follow-ups were quicker as he was 3 when we had the surgery, but I was less stressed and worried because I had gone through it with my daughter.

I hope this helps. Just know you are not alone, I think that makes a huge difference.

[SheliRenee]

Hi All -

I wanted to thank everybody who has given their input. It means a great deal to me. Eventually I will learn to not stress so much, but I think that will take time. I've never been good with worry and stress.

I hope everybody continues to do well.

SheliRenee

[Karen P]

Hi SheliRenee,

It takes time. Even after you get a grip on things....you'll fall every once and a while and it's ok.

Take care.

Karen

[Lisa Salberg]

As Moms (and Dads) are jobs are to worry about our kids... However it is also our jobs to help them grow as best we can... Stop for a minute and take a look...YOU ARE DOING A GREAT JOB! YOu are your childs advocate, you seek information to help him and you are going to continue this his entire life...Moms protect their kids.
RE septal measurments... dont get caught up in numbers "NORMAL" is a difficult thing to measure in a child and numbers will change as he grows.

Some of Reenies explainations above are not 100% but they do give a general idea.
I woud not expect to see any BIG changes in numbers visit to visit... and I would not be happy or sad to see slight changes in numbers as they can change from day to day.
WATCH HIM... he will let you know if he is not feeling well...watching numbers can make your head spin...and you have a 2 yr old and HCM or not they can make your head spin daily anyway!

Big hug!
Lisa

[Linda]

SheliRenee, Lisa is so right. And you know what? If Keanu had no medical problems, you would worry about something else, that's what Moms do. You are his Mom and you know him better than anyone. Parents have a way of knowing when something is not right. Trust yourself. You may not be able to explain why or how you know, but you will sense things and be on top of it. You probably know the day before when one of your little ones is going to be sick with a cold the next day, right? It's your time to be overwelmed, and we all take turns being on the reassuring end or the receiving end. Thinking of you, Linda