Hi -- following (at email's bottom) is an interesting exchange from November, 2011 regarding Dysphagia.  I've been looking through the archives for information about this diagnosis.

I've just been contacted through WIC by a mom of a 6mo old boy diagnosed with "Dysphagia" [permission to post].  Mom is concerned that her supply is going down b/c pumping yields increasingly less.  She is told by MD she must thicken formula or what she pumps for the baby.  I was asked to help set up a pumping schedule to help increase her milk supply.

It is interesting that Ms Genna disagrees with the plan to encourage formula over ebm; some have noted that thickening breastmilk is difficult, though seemingly not impossible.

Without knowing anything about this, my initial reaction was to work with the mom to increase her own milk supply by encouraging direct breastfeeding; she's been pumping, and using a bottle w/ ebm and formula.  (My arguments:  (1)  cheaper,  (2)  easier,  (3)  healthier).

However, I don't want to contravene the MD's advice ... I'm "just" a LLLL, no formal training.  Moreover I'm worried about inadvertently coercing a young mom subject to buffeting by elders.

Nevertheless mom is game to try ramping up her milk production.  I could work with the suggestions posted below that might help her baby tolerate the 'thin', natural milk.  However, I certainly don't want to be endangering anyone.

What advice can anyone here give me as to either (i) how to procede (politically or practically), (ii) the nature of the disease, (iii) important information sources.

Many thanks.

Sara Roos, LLLL of WLA.


from Catherine Watson Genna:
Sometimes position changes during breastfeeding can help a baby with 
dysphagia swallow more easily and more safely. Having mom lay flat on 
her back, or nearly so, and the baby lay on his belly on mom can help. 
Having his head gently tilted back during breastfeeding may help. 
Feeding frequently for short periods can help - swallowing precision 
usually gets worse with fatigue. Pre-feeding handling such as massage 
can also help organize the baby so he swallows better too.

There is absolutely NO reason to favor formula over human milk when 
thickened feedings are truly necessary for safe swallowing. If the baby 
has been breastfeeding, the breastfeeding relationship can usually 
continue by offering the baby the breast after pumping if the baby is 
truly not a safe swallower. There are thickeners that work for human 
milk, but as Judy mentioned, rice cereal is not one of them.

Usually babies who should get thickened feeds have a history of repeated 
lower respiratory infections - pneumonia, etc.

Cervical auscultation is a non-invasive took that can be used to assess 
whether position changes are helpful for a breastfeeding baby with 
dysphagia.

There is more information in Supporting Sucking Skills in Breastfeeding 
Infants, you can read small portions of the first edition free on google 
books.

Catherine Watson Genna BS, IBCLC  NYC  cwgenna.com


On 11/5/2011 5:54 PM, [log in to unmask] wrote:
> Erika writes:
>
> What do  you ladies know about dysphagia? I have a client who recently had
> her 8 month  old diagnosised with this and the children's hospital told her
> that she  shouldn't use breastmilk but instead use formula and thicken it. I
> have never  even heard of dysphagia so I thought I would see if there is
> anyone with any  information on this?
>
> ~~~ I'm sure there are experts who know more than I on this list, but just
> to get us started: dysphagia just means having difficulty swallowing. Some
> babies who have dysphagia actually have an undiagnosed tongue tie, but
> others  have no structural/anatomical reason for this difficulty and it may be
> more  related to having low tone or something else. Babies can develop this
> after too  much refluxing, or they can have it inherently for reasons we
> sometimes can't  figure out or that become evident later. I've seen some babies
> whose dysphagia  doesn't become evident until they reach the life stage when
> they begin  complementary feeding, and have to cope with solids. They may
> fall off their  growth arc then, or show other issues. You are right that
> mother's milk is  usually easier to coordinate in terms of SuckSwallowBreathe,
> easier than AIM a  study showed. But there are some babies who have such an
> issue they cannot  safely swallow even their moms own milk. Some things
> suggested as thickeners  don't really work with human milk because the
> properties in the milk begin to  digest it and it thins out anyway. There are also
> things like Thick-It which is  made as a food additive for those people who
> really cannot swallow any  liquid safely.  ( Like my grandmother when she was
> in her 90s, or someone  after a stroke. This is used for very challenged
> babies too sometimes.) One  major challenge I've found is that many feeding
> therapists ( OTs and SLTs,/SLPs)  use bottlefeeding as the norm and only know
> how to work off that. They may think  breastfeeding is part of the issue, and
> it often is not. ( In rare cases, as I  said, nothing can really be safely
> swallowed without aspirating.) When I can, I  try to attend at least one
> session with the OT/SLT/SLP with the mom and baby to  see what their point of
> view is and whether they actually know anything about  normal (meaning
> breast-) feeding.
>
> Hope that helps and someone wiser jumps in with more info.
> Peace,
> Judy
>
> Judy LeVan  Fram, PT, IBCLC, LLLL
> Brooklyn, NY,  USA
> [log in to unmask]

             ***********************************************

Archives: http://community.lsoft.com/archives/LACTNET.html
To reach list owners: [log in to unmask]
Mail all list management commands to: [log in to unmask]
COMMANDS:
1. To temporarily stop your subscription write in the body of an email: set lactnet nomail
2. To start it again: set lactnet mail
3. To unsubscribe: unsubscribe lactnet
4. To get a comprehensive list of rules and directions: get lactnet welcome