Insensitive, Ignorant Pediatric GI

MBombardier · Post by **MBombardier** » Tue Mar 08, 2011 10:38 pm

I have to rant, and this is the best place to do it. I have a friend whose baby boy was born on Dec. 2nd. He weighs 7 lbs., 10 oz., two ounces under his birth weight. She went gluten-free last week, casting around for anything to help him. There is nothing wrong with how much he eats, and it comes out fine.

After her pediatrician's office dithered around for a while, they finally gave her a referral to a pediatric GI on Mar. 28th. This ped GI's office has already called and told the parents to put the baby on a high-calorie formula, and if he hasn't gained weight by his appointment, the GI will put in a feeding tube. The GI has said that the blood tests the baby had several weeks ago are sufficient, and no more testing needs to be done.

I find this unspeakable. This little guy is skin and bones, cannot even hold up his head yet, and his mother says that he screams a lot unless he is being held. It is pitiful. In just the few days the mother has gone gluten-free she thinks he has gained maybe an ounce and that the screaming is less.

Thankfully, my friend has an appointment with a highly-recommended naturopath on the 18th, who hopefully will be much more likely to be open to other causes for the baby's trouble than that ped GI.

natythingycolbery · Post by **natythingycolbery** » Wed Mar 09, 2011 3:24 am

That is horrible! I have no words for how disgusted this makes me!

starfire · Post by **starfire** » Wed Mar 09, 2011 5:55 am

I don't blame you for needing to vent. The situation is horrible for all concerned.

I wish I knew what to say.........

to all.

Love, Shirley

MaggieRedwings · Post by **MaggieRedwings** » Wed Mar 09, 2011 6:22 am

Rant all you want since this is horrendous by any doctor. I just cannot wrap my arms around why docs are the way they are.

Love, Maggie

Post by **tex** » Wed Mar 09, 2011 8:51 am

Too many doctors seem to believe that medical tests are generally 100% reliable, and they don't question the results. The problem is, those tests are no more reliable than a computer, and a computer is no "smarter" than the person who programmed it, nor is it any smarter than the person who is using it, whenever data must be input. IOW, if the doctor doesn't select the correct tests for the job at hand, and interpret the results accurately, the test results are worthless, and so is the doctor's opinion.

Tex

Foxnhound8 · Post by **Foxnhound8** » Wed Mar 09, 2011 9:20 am

Try living with one who insists I take our 14 year old daughter who has terrible gas (stinky) just like her father, to a regular GI doc instead of the nutritionist I was going to see. He has lived with this, what he likes to call IBS his entire life and insists his diet has nothing to do with it. He thinks food "sensitivity" is a bunch of hooha.

foxnhound

Post by **tex** » Wed Mar 09, 2011 9:58 am

It's no wonder the problem is so widespread, when even doctors who have diet issues pretend that they're due to something else. All I can do is shake my head in disbelief. There's no question, though, that most doctors feel that way, so your husband is certainly in line with current medical thinking, (FWIW). You have my deepest sympathy. LOL.

Tex

Zizzle · Post by **Zizzle** » Wed Mar 09, 2011 1:15 pm

Oh Marliss, that's awful!! As a mom, I can imagine what it must feel like for docs to tell you all testing is complete. Do you know how many of the mandatory newborn screenings were performed at birth? I ask because many states only require a fraction of the available tests. He could have any number of rare genetic or enzymatic deficiencies causing all this. Check out where your state stacks up here. The later pages are for the rarer conditions not always present in a state's testing program:

http://genes-r-us.uthscsa.edu/nbsdisorders.pdf

On the other hand, I have heard of rare stories where a mom's breastmilk was somehow not complete or not high enough in fat. Has she pumped some milk to see how much fat rises to the top after a few minutes? Low-fat breastmilk would probably produce green, messy stools (too much watery foremilk does it too). Has she tried pumping out the foremilk first and only feeding him the fat and calorie-rich hind milk?

If it were me, I might agree to try a hypo-allergenic formula first (not just high calorie), to determine if it's something about my milk he's reacting to or not able to absorb.

There are no right answers, but simply throwing calories at the problem? It can't be that simple.

Keep us posted.

Zizzle · Post by **Zizzle** » Wed Mar 09, 2011 1:26 pm

And you already know about my friend who's baby has a glycogen storage disease. The most notable thing about his appearance was very thin arms and legs, with a protruding belly (enlarged liver), and eventually the development of chipmunk cheeks (round pudgy cheeks on a skinny baby is very odd). These are characteristic signs, but I can't remember if they were evident at 3 months. Doctors did not suspect it until he was 9 months old (routine bloodwork seemed normal).

http://www.agsdus.org/html/whatisglycog ... sease.html

mbeezie · Post by **mbeezie** » Wed Mar 09, 2011 2:05 pm

Marliss,

Breastfeeding may still best for this baby if mom can mange it. They can supplement if needed. Since mom went GF, you might want to encourage her to go dairy free as well and see what happens. I would also encourage a visit to a pediatric nutritionist.

Foxhound,

Doctors get 20 minutes of nutrition education in medical school, so it's no wonder they think diet is hooha.

Mary Beth

Gayle · Post by **Gayle** » Wed Mar 09, 2011 5:38 pm

Marliss,

Since this baby was of normal birth weight, then it would seem it was a full term birth?

This is an obvious case of Failure to Thrive ... and there can be no excuses allowed for a Pediatrician (?) that does not recognize this.

There can be many, many, many reasons for this kind of syndrome, but I would wonder what kind of a support system this Mother has? Is this a first baby? Who has been monitoring this situation? Where is any family?

IMHO -- Someone really needs to intervene on behalf of this infant ... doesn't seem that the Dr. (?) here can be counted upon.

I would consider trying to contact someone at the county health department about this child. Both this infant, as well as this mother, NEED help!

Sorry,
Gayle

MBombardier · Post by **MBombardier** » Wed Mar 09, 2011 10:32 pm

Thank you all, I really appreciate your concern. I knew you would be.

Zizzle, this is good information. WA seems to be fairly thorough in the testing it requires, if I am reading the PDF correctly. And the baby was born in the hospital, not at home, so he likely had all the required bloodwork done. I am going to print out the PDF and take it to her.

The mother is pumping right now because apparently they've taken the baby off breast milk and are just giving him Nutramigen. They were just supplementing with it before. He is not happy at all, and will not quiet with one of his brothers or his sister. He is the fifth child, and was induced eight days early because mom had serious gestational diabetes and blood pressure issues.

I am going to suggest seeing what head the breast milk develops, and ask what the baby's stools look like. Mary Beth, just being able to nurse the good hind milk after she pumps a bit may calm him. I will suggest that.

Mom had already gone off dairy, and had seen no effect, so that's why she went gluten-free last week. Her mother is in town, and a sister, I think, but the main support is coming from our church. We have a great church.

We are setting up at least three meals a week for however long it takes. We did this for three months one time for a woman who was so sick with morning sickness that she had to take the anti-nausea medicine chemo patients take.

There are four of us who are serious about food intolerances, and know how to cook gluten-free, so likely the family will get regular meals from the rest of the church and we will see what we can do for the mom, like freezer meals, or something. Also, a few of us (including me) live within 20 minutes, so we can run over there and hold the baby for an hour or so while the mom pumps or does what she needs to do for herself or her family.

I found out today that the pediatrician is calling every day to check on the baby and reassure the mom that he is not going to die. I like that in a pediatrician. We'll see how the pediatric GI conducts him/herself after the baby's first appointment.