Heart Stuff

[Guest guest]

Hi there,

My son was just found to have a left aotic arch which, as I understand

it, could press on the trachea causing stridors, turning blue, loss of

oxygen, all of which he had. A brief history is listed below. I know

that some kids here take vitamin E, carnitine and fish oil, all of which

are friends to the heart. I think I remember a post from Dr.

stating that some of our kids even have high cholesterol (something we

will check shortly). Just wondering if anyone's child has been

diagnosed with this and if there is anything they could tell me about it.

Thanks!

Liz

My son saw a cardiologist at birth, at 3 mos, once this past year when

he turned blue but no echo then which is why I changed docs. Echos were

run at birth and three months. I am getting those records to compare.

As for the rest of the coronary anatomy the latest report reads:

Grade 2-3/6 vibratory systolic ejection murmr heard best in supine

position.

Mild hypotonia. (Everyone says this does not improve but it has. Recall

last year when he could not sit upright on a horse. Now he can.)

Echo showed Normal intracardiac anatomy and function. No mitral valve

prolapse and no aortic root enlargement.

Normal cardiac eval.

At birth his stridors and pulse ox #s were bad. Laryngomalacia was the

diagnosis. All follow up was with ENT who had no answers and said it

would get better. It did not. At three mos we went to the cardiologist

to follow up. It took 5 hours to do the echo because was

screaming the whole time. Giant gas bubble. This poor kid had milk and

gut stuff from the start and at this age I had him on neutramagen as I

switched to that at 2 weeks old. I am wondering if this was there all

along but he had to get old enough for them to see it?

I do not mean to get all " theory of everything " on you but the pressing

on the trachea thing makes sense. The stridors never left until age 18

months. Every doctor I say that too gets a strange look on their face

when I say it. That magic age when he walked and first spoke. The

swallowing issues have been forever and were part of the speech thing

though he can swallow much better now and has for a good while. Part of

his limited diet was the swallowing. Loss of oxygen, slight, over time,

may very well explain some of the retention issue delays. The first day

I took him off just milk his breathing while sleeping was silent as

opposed to struggling prior which I thought was OK because he kept

getting cleared medically. He is doing well now but this makes sense

given his vitamin E response (RDA), his likely need for carnitine and

the general stuff under consideration at the metabolic neuro. The stuff

so many apraxic kids respond to but I am asking about these things on a

lower level if at all since I am guessing is not truly apraxic

but does seem to share some of the heart stuff seen in some apraxic

kids. I am guessing with an otherwise normal exam we just monitor this.

She does not want to see him again until she gets the info from the

geneticist to see just which connective tissue disorder was

diagnosed with.

[Guest guest]

Liz,

You should check cortizol. My MD/ND reccommended this. Usually likely in

these kids.

Colleen

[ ] Heart Stuff

Hi there,

My son was just found to have a left aotic arch which, as I understand

it, could press on the trachea causing stridors, turning blue, loss of

oxygen, all of which he had. A brief history is listed below. I know

that some kids here take vitamin E, carnitine and fish oil, all of which

are friends to the heart. I think I remember a post from Dr.

stating that some of our kids even have high cholesterol (something we

will check shortly). Just wondering if anyone's child has been

diagnosed with this and if there is anything they could tell me about it.

Thanks!

Liz

My son saw a cardiologist at birth, at 3 mos, once this past year when

he turned blue but no echo then which is why I changed docs. Echos were

run at birth and three months. I am getting those records to compare.

As for the rest of the coronary anatomy the latest report reads:

Grade 2-3/6 vibratory systolic ejection murmr heard best in supine

position.

Mild hypotonia. (Everyone says this does not improve but it has. Recall

last year when he could not sit upright on a horse. Now he can.)

Echo showed Normal intracardiac anatomy and function. No mitral valve

prolapse and no aortic root enlargement.

Normal cardiac eval.

At birth his stridors and pulse ox #s were bad. Laryngomalacia was the

diagnosis. All follow up was with ENT who had no answers and said it

would get better. It did not. At three mos we went to the cardiologist

to follow up. It took 5 hours to do the echo because was

screaming the whole time. Giant gas bubble. This poor kid had milk and

gut stuff from the start and at this age I had him on neutramagen as I

switched to that at 2 weeks old. I am wondering if this was there all

along but he had to get old enough for them to see it?

I do not mean to get all " theory of everything " on you but the pressing

on the trachea thing makes sense. The stridors never left until age 18

months. Every doctor I say that too gets a strange look on their face

when I say it. That magic age when he walked and first spoke. The

swallowing issues have been forever and were part of the speech thing

though he can swallow much better now and has for a good while. Part of

his limited diet was the swallowing. Loss of oxygen, slight, over time,

may very well explain some of the retention issue delays. The first day

I took him off just milk his breathing while sleeping was silent as

opposed to struggling prior which I thought was OK because he kept

getting cleared medically. He is doing well now but this makes sense

given his vitamin E response (RDA), his likely need for carnitine and

the general stuff under consideration at the metabolic neuro. The stuff

so many apraxic kids respond to but I am asking about these things on a

lower level if at all since I am guessing is not truly apraxic

but does seem to share some of the heart stuff seen in some apraxic

kids. I am guessing with an otherwise normal exam we just monitor this.

She does not want to see him again until she gets the info from the

geneticist to see just which connective tissue disorder was

diagnosed with.