Dear Jennifer,
"outlived her usefulness." "friends make bad doctors" - I personally would find another developmental ped. if possible. What warm and caring statements this person gave to a mother that has given her entire life to her baby. If we had a hall of fame for moms   this mom would be in the top 10%. If I was working with an ifant that high risk, pumping through the winter would be important. 
With issues of delayed swallowing- I have seen this in an infant once, thickening the BM was done. There are several ways to do this from Rice Cereal to some commercial agents. I am also wondering why at a year does this infants gut still not tolerate higher osmol. feedings more than what you described below. Has she seen a pediatric */gastroenterologist/* </search?hl=en&q=gastroenterologist&spell=1> and a pediatric RD/IBCLC yet?  
I wonder if Robin Glass OTR at COH in Seattle, Nancy Wight MD may have insight.  
I am glad your are able to be her friend and provider her with supportive and accurate info.
Karen Querna, RN,BSN,IBCLC
Spokane WA USA

>
>Date:    Thu, 27 Oct 2005 22:47:12 -0400
>From:    Jennifer tieman <[log in to unmask]>
>Subject: Nutrition for baby with neurologic impairment
>
>Dear Wise Ones,
>I haven't posted in a long time, but I've been reading intermittently, just
>too busy to keep up.  Of course now I'm back because I'm hoping someone will
>know more than I do about a particular child.
>I have permission to post.  I've mentioned this baby before on Lactnet.  He
>will be 1 year old on Oct. 30.  He was born after a serious placental
>abruption and has anoxic brain injury.  He has been G-tube fed since 1 month
>of age.  His mother has pumped for him this entire year.  Until about 2 mos
>ago, breastmilk was almost his exclusive diet.  He has been very slow to
>grow.  At almost 1 year, he weighs just 15 lbs, and is also below standard
>growth charts 3rd percentile for height and head circumference.  He has been
>relatively physically healthy, though.  We have tried repeatedly to increase
>the volume that he eats, but have been unable to as he just vomits more if
>the volume is increased.  On the advice of a developmental ped, mom tried
>adding powdered formula to fortify breastmilk, but he doesn't tolerate this
>and just vomits more.
>In the last 2 weeks, he has suddenly started to have more intake by mouth. 
>He is now taking breastmilk by bottle, about a total of 600-700 ml per day
>(21-25 oz) and also some pureed foods, mostly vegetables to which mom adds
>some additional coconut oil and infant cereal made with breastmilk.  He is
>difficult to feed by any method, and this mom is very dedicated and spends
>much of her day pumping, feeding and caring for this little guy.  She has
>been on domperidone since baby was about 3 mos old and continues to produce
>his current intake, plus a little extra.
>Here's the questions after all this background.  Mom recently took him to
>the developmental pediatrician and he also had a repeat swallow study.  I
>have not seen the report, but mom says they told her he had no aspiration
>with any consistencies, but that he had delayed swallowing with thin liquids
>and they are worried he may aspirate because of that.  The developmental ped
>recommends thickening all thin liquids.  Also, the ped was very unhappy
>about his weight, and told mom that she had "long out-lived her usefulness"
>pumping milk for this baby and that it was inappropriate for him to still be
>getting breastmilk.  She recommended putting the baby on pediasure instead.
>This mom is very reluctant to switch to pediasure, especially since this
>baby has not tolerated any formula when she's tried it for fortification or
>supplementation.  She wants to continue to pump for him through the winter
>at least, but she is feeling pretty discouraged after being told she had
>"outlived her usefulness."  
>Is there any advantage to switching to a formula like pediasure (which is 30
>kcal/oz)?  Is there a way perhaps instead to fortify breastmilk to increase
>calories since we can't seem to increase his volume?  Now that he is eating
>by mouth, is thickening breastmilk vital, knowing that he has never shown
>aspiration on a swallow study, just the delayed swallowing?
>I have told the mom that I'm out of my league here and that the
>developmental ped sees more of these babies than I do, but on the other
>hand, breastmilk is an important part of the diet of many healthy children
>of this age, so I don't see how it could be bad for this little guy, who
>certainly needs the immunologic protection.  I am also friends with this
>mom, though, and feel I'm a little too close to the situation sometimes to
>be objective.  (The dev. ped. told her "friends make bad doctors")
>Thanks for any insight!
>Jennifer Tieman
>Family Physician
>Mom to 4, including my nursling Caroline Rose (now 29 mos!)
>
>             ***********************************************
>
>  
>


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