Good thoughts for our echocardiogram today, please.

[Aletheia]

Hi ladies-

I know a post about an echocardiogram doesn't really belong here, but this is the forum in which I have gotten the most support as I have struggled with the health of DS1. He is casein/egg whites/tree nuts/shellfish allergic and salicylate sensitive. He is also a failure-to-thrive kid with iron-deficient anemia. And now, as of yesterday, he has a heart murmur, too.

Most pediatric heart murmurs are benign, or related to something non-life-threatening, like anemia. But others are not. Taken in combination with his low weight gain, it is more probable that the echocardiogram will find a structural abnormality, which could mean surgery.

We have been aggressively trying to treat the anemia with ferrous sulfate drops, supplementing me with iron (he is still breastfed), and making more of a concentrated effort to get more red meat into his diet in combination with vitamin C. His hemoglobin levels actually dropped over the 6 weeks we have been doing this.

He also managed to *lose* weight (.5 pound) over those 6 weeks, and so he is barely hanging on to the 3rd percentile line for weight in the WHO charts. He has also fallen off his trajectory for height gains.

The nutritionist wants him on "Bright Beginnings Pediatric Drink" to help him gain weight. It is basically water, sugar, safflower oil, and (synthetic) vitamins. DH has insisted that we give it to him; I have conceded so that we can also follow Ellyn Satter's guidelines regarding mealtimes (I am sick of my husband trying to bribe him with food and trying to spoon feed him. He's three years old for crying out loud!)

We can hardly afford it right now (we're buying groceries on the credit card), but we are going gluten free on Monday. I'm done messing around. (He had the transglutanimase test, and it was negative.)

I am so nervous. So, so nervous right now. I think I am overreacting, but I feel so vulnerable and lonely as I try to figure out what the best thing(s) to do for him is/are.

I saw some posts about tongue tie; I want to take a good look at his tongue after he wakes up.

[tanyalynn]

:

That's scary. You'll get through it, and make good choices wherever the information you get leads you, but it's still scary now.

You're doing a good job.

:

[LauraLoo]

I've had two children with heart murmurs. One required surgery for a heart defect and was quite serious from birth (FTT and showing signs of congenital heart failure,) the other one was benign and was gone by the time she was 3 months old. It's scary, I know. FWIW, my ds had his surgery at 5 months old, and he is considered completely resolved. No restrictions and you would never know by looking at him. He's very healthy and very energetic as an 8 yo.

If you find yourself going down the path of surgery, which I am hoping isn't the case, there are mamas in the SN forum that have BTDT.

[Aletheia]

Thanks,mamas. I am just posting here today to benefit those who may turn this thread up in a search to encourage them-- my son's murmur was found to be benign.

We actually decided to cancel the echo and ask instead that a pediatric cardiologist listen to the murmur with a practiced ear. She did so, and then ordered an EKG to be sure it was as innocent a murmur as she thought. It was.

The EKG took less than 5 minutes and was painless; he sat in my lap the whole time. I am fairly sure that it will cost our insurance co. and us less than the echo, too.

Phew.

[tanyalynn]

Yippee! :