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From:
Trish Whitehouse or John Zabarsky <[log in to unmask]>
Reply To:
Lactation Information and Discussion <[log in to unmask]>
Date:
Fri, 11 Jan 2002 16:54:03 -0500
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Sorry I can't answer each individual private email right now, but I've got 3 of my 4 children home with chickenpox. The 4th had it and gave it to the other three.

To answer some more questions.

The family has investigated the idea of having a PEG (Peripheral Endo Gastric Tube) and after deliberating and lamenting over it for months, they went to a pedi gastroenterologist who actually advised against it.  And this guy was the actual surgeon who does them!  He agreed with the OT and parents, who were all present at the appt. that this baby is making too much progress too quickly to risk surgery.  Though it is considered "minor" surgery, as you can immagine, nothing is minor to this family and child, and it would require having general anesthesia.  The family has still not recovered from the trauma of the last surgery.  (A tube is threaded down the throat, into the stomach with a scope, and from the inside of the stomach, the tube is "poked" through and to the outside.  A "button" is put at the cap of the tube, so that the tube can be capped off whenever it is not needed.  As I understand it, the button is flush against the skin, so it is not a tube that hangs out.  When it is no longer needed, the button is just pulled out and the hole heals.  I may be off on this a bit, but someone can correct me.)

The reason the NG (Naso Gastric...tube inserted into the nose and into the stomach.  It is temporary, but years ago when they didn't have PEGs, NG tubes stays in for years, I am told) tube is so thin is because they are trying to minimize the discomfort.  All the doctors and specialists these people have been to have been amazed at how this child doesn't seem bothered at all by the tube.  He doesn't swipe at it, doesn't pull at it, and the skin under the transparent tape on his cheek is unbelievably healthy.  When it does come out, usually by accident, the skin on that cheek is red for about a day, but left open to the air, it is completely fine in a day or two. ( Breastmilk, again.)

As far as how "food friendly"  this family is, the answer is:  Very.  When this child first came home, a year ago, light touch, even brushing against his cheek would make him scream and throw up.  He didn't  mouth toys at all, and actually did not even have the upper body strength to lift his arms to get the toys to his mouth.  The parents are very aware about power struggles and pushing too hard, and I believe that is why this baby has done so well with such a severe aversion. They really "get it".  He now makes clear choices about what he wants and refuses, by shaking his head no or screaming for the item of choice.  The food he takes, in quantity, is still minute.  But he has quite a variety, and wants something constantly.  His mouth is just still very sensitive to textures and tastes, and with pieces that are bigger than a crumb, or the size of a rice grain, he will gag or throw them up.  Tastes make him grimace or gag, but it is improving.  The reflux was incredible...threw up night and day, while sleeping, constantly.  Now he goes days and days with no reflux or throwing up at all.

They are working with many experts, and in fact they have now "outgrown" two OT's because the philosophies of these OTs was to push past the boundaries the child was setting.  As someone said to them, what happened in the hospital was an oral assault, and to "assault" any further only destroys any trust the mother/child have developed, and compounds the problem.  By the way, the child did not want to be touched when he was discharged either.  He preferred to be in the car seat, and would rock his head back and forth to calm or get to sleep.  He screamed when he was touched.  Now he is wonderfully attached, carried in the sling, co sleeps (always has), and has perfectly normal 18 month old separation anxiety.

I believe this family is so in tune with this child because they have attachment parented their other 3 children, and though this child presented many new challenges, they were going to do no less with this one.  The mom has always followed her instincts, listened to her gut, and ignored all the people who told her it couldn't be done.

Also in answer to a question, yes, she still wants to nurse him, and in July, he had gotten as far as to accept her nipple into his mouth, hit the roof of his mouth, though never latched, and mom would express milk into his mouth.  He was rooting again, too.  But I guess she got so excited, so hopeful, that she "pushed it", he sensed the agenda, and backed off.  Sigh.  Now she lets him watch with jealousy as his 4 yo sister "pretends" to nurse, and he'll scream to get in mom's lap, then he licks her nipple, and laughs.  So there's still a chance, but she's learned not to push it.

I think that about answers everything.  I have lots of input about extended pumping, but I have to get back to "Pox City".

One last thing  (sorry this is so long).  I emailed my question about "exclusive breastmilk" being sufficient for an 18 month old to Dr. Newman, and he said that it is, but possibly deficient in iron and zinc.  This is a very interesting answer, because I have heard that a zinc deficiency lessens the sensation of taste, and in this case, wouldn't be helping this aversion any.  I'll look into that further.

Phew!   Finished for now!

Trish

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