urine cultures/fatty liver

January 24, 2004

Hello,

As I do from time to time.. I ordered the boys medical records from their hosp. visits. NOONE told me that Carsen's urine was positive for bacteria.

This was when he was admitted last fall, to UK ( one of his admissions).

He had urine reducing substance @ 250..I read that this is glucose or galastose (spelling?).

It was noted that it was called to the nurse from the lab. This is seen in kids with metabolic diseases, right????

Also, his urine culture was bad. The lab wanted a repeat but not one took it nor did they tell me!

It grew:staphylococcus species

Probable Gram Positive Rod

Non Hemolytic Strephtococcus/enterococcus species

On another admission, it grew only the Probable Gram Positive Rod

What does all of this mean????

Makes me wonder if he's still got something there.

His urine is SOOO strong. Remember me complaining of this?

Also, he is sick again with severe congestion. If he doesn't stay on antibiotics, he gets a bad chest rattle and you can hear his throat or whatever it is inside whistling when he breathes (with a stethoscope). He is gagging & vomiting on it. It also gives him diahrrea. Where does this come from? Does this sound like Asthma? I was going to take him to the allergy/asthma clinic on Monday but they said that there is no way of testing a baby for asthma. They start asthma meds to see if it helps. I'd like to know what it is before we do any sort of meds.

I don't like meds anyway and to take meds for something he may NOT have doesn't make sense. I have considered that he might have it but would like proof. Is there any testing for infants?

Also, his liver ultrasound, that was never relayed back to me from anyone....states that his liver has more fat than usual (inhomogeneity). Not considered enlarged as far as measurements go but everyone that feels it says it's mildly enlarged. I called the GI dr and she she's the one who told me what inhomogeneity means.

She says she's not worried about it. Well, I am.

It seems that some dr's develop an acceptance level for kids with a primary disorder. Now, if he was free and clear of any metabolic disorder, it would probably raise concern, right?

I am sure there has to be an acceptance level due to the many things that an FOD can cause, especially fatty infiltrations.. but, I'd still like to know what it means to find even "subtle" findings or to know what this would mean for even a healthy child and NOT be given an It's Ok because it's "Carsen" or "Caden". I can never seem to get the straight of things due to their primary illness.

I'd like to be told whether it was Normal or NOT.. Plain and simple..

What's NOT normal for healthy kids is really NOT normal for my kids either but just acceptable or expected. However, we shouldn't panic until things get bad. I know this. In their defense, I think they don't tell us that things are abnormal due to the fact that we or at leat "I" might become paranoid and worry more than I should BEFORE it becomes a problem.

I'd really like to hear your thoughts on all of this,

Krystena s

mom of 2 w/GAII

Caden 5 yrs

Carsen 7.5 mths

January 24, 2004

Krystena,

We battle the same things with the test result issue. I have

recently purchased a fax machine. I ask that all copies of test be

sent to me for my review. If we see the doctor right away I ask for

a copy while we are there so i can ask any questions I may have. If

we are inpatient, I ask the nurses daily for all tests run that day.

So far I have had pretty good luck. This way you can ask all of the

right questions when the doctor comes for rounds in the a.m. Since

we are inpatient so often, they have become really good about it. If

there is a problem, just have the doctor right an order in the chart

to give the parents all test results...this should clear it up and

it is your right.

also has a fatty liver and no one seems to worry about it

either. Very annoying. I have never gotten a really good reply to my

questions concerning this. Since they aren't sure what her overall

picture is (bone marrow failure, mito, cardiomyopathy,

hypogammaglobulinemia, GAIII and the list goes on and on)they don't

know what is caused by what. Have they had a liver biopsy? This is

really the only true test of what is going on in the liver. Even

when they did one on 2 yrs. ago and her liver was green,

fatty and had some cirrhosis, her liver enzymes were normal. So I

don't hold much weight with them.

Good luck, Dawn

January 24, 2004