I have been working with a baby with Turners Syndrome, a rare disorder
affecting only girls, which has life-long implications, among them:
unusually short stature, oddly shaped feet in infancy, and infertility, but
not retardation. I saw mother and baby at 3 mo. pp for chronic sore
nipples. Baby is exclusively bfed, and while she is growing WNL, it is on
the low-normal end of the spectrum, and I have had the mother doing all
sorts of things to protect milk supply and maximize delivery. I identified
channel palate (which is typical in baby's with Turners) and a tongue-tie,
which my ENT friend clipped. There was some improvement in sensation during
feeding with clipped frenulum, but not all problems resolved. As channel
palates mimic some of the same issues as clefts, I had warned mother that I
didn't think the frenotomy would resolve all the frequent losses of suction,
falling off nipple, pulling on and off, etc. Additionally, infant has low
muscle tone. I told mother I felt infant had neurologically connected
feeding probs. which I assumed were related to the syndrome. Mother had not
been told to expect feeding probs. and had been reassured that the syndrome
would not affect this aspect of her life. Interestingly, tho, mother sent
away for info from the Turner's Syndrome Society (a blessing on all such
peer support groups!) and got a stack of fascinating stuff which she shared
with me. In one of the articles I found some remarks which I find
INCREDIBLE, and I want to share this with you all, and want to esp. querry
our British members about the researchers -- whether creditable, known to
you, etc.
From: Skuse,D: Feeding Difficulties Among Infants and Older Children with
Turner Syndrom. In: Turners Across the Lifespan, (I don't have full ref. for
this as I have only the xeroxed portion of this text which includes the
Skuse chapter. I have requested the full citation.) p. 17-24.
"In Turner's original description of the syndrome that is associated with
his name, symptoms of difficulty in swallowing were not acknowledged...More
recently, Chen et al reported that 70% of parents of children with TS
described feeding difficulties during early childhood, including
regurgitation and vomiting." pp 17
"Most (80%) of mothers of girls with TS and 70% of mothers of comparison
children initially chose to breastfeed. However, mothers of the TS group
reported far more problems, largely on account of difficulties with their
infant "latching on" to the nipple and having a weak suck. Consequently,
they tended to give up breast feeding sooner than planned." pp 18.
"Breastfeeding has been especially difficult for mothers of infants with
TS...problems with a weak suck and poor lip position around the nipple were
reported. The frequent reports by mothers of excessive or recurrent
vomiting, regurgitation, and gastroesphageal reflux suggests that some
children may have a dysfunction of the lower gastroesophageal tract.
Clinical observations by our team suggest that in some children, persistent
reflux may be associated with disordered oral-motor function. Food
approaching or entering the mouth seems to trigger reflux or gagging even
before they attempt to chew or swallow it. As very few infants with TS
refused foods or were exceptionally fussy about what they would eat, this
suggests that the feeding behaviors we observed were not simply a reflection
of maladaptive interactions between "difficult" infants and their
caregiveres." pp 24
"...it is our hypothesis that the reports of difficulties in older children
are likely to reflect continuities in feeding disorders from infancy...We
are also planning to study the relationship between oral motor dysfunction
in terms of feeding and later speech development" pp24
Now take a look at their conclusion.
"We have some evidence that there is an association between early disordered
oral motor skills and later attention deficits with hyperactivity. Other
research by our team has shown that 42% of girls in the 4-11 range suffer
from what is probably clinically significant attention deficit hyperactivity
disorder."
"Regarding management of feeding disorders, it should be noted at very few
mothers had received help or advice about their child's feeding problem.
Every mother we spoke to with an affected child would have welcomed some
intervention....Particular attention should be paid to the potential hazard
of a high arched or stippled palate, in which food can become impacted.
Mothers should be encouraged to check an infant's mouth and clear away
accumulated food after each meal."
"...Severe early oral motor dysfunction is associated with an increased risk
of later attention deficits and hyperactivity. Speech pathologists have an
important role in both assessing the nature of the disorder and advising on
management, and should probably be involved at an early age." pp25.
I realize the author is specifically addressing the neurological issues of
the infant with TS, and it may not be possible to extrapolate to other
poorly functioning infants who DON'T, but I was so struck by some of the
remarks about early feeding problems and a later association with
hyperactivity. We had a thread here on lactnet a while back about our own
members who have children with ADDH. I wonder if they can recall if these
children had feeding related problems (weakness of suck, lip seal problems
- leaking milk, and reflux) I think it would be wonderful if we would all
tart to flag charts of infants we see who are doing these things and make
some attempt to follow-up later to see if these babies turn into kids with
identified ADDH. One more potential argument for getting the superior brain
food to babies with sucking problems! And for making the point to our
colleagues in the other disciplines that breastfeeding is physical therapy
for the tongue, jaws, and indeed the entire oral-motor functioning, and this
may be key to toning the system to mitigate the underlying neuropathies
which are probable causes of the poor functioning.
Sorry this is so long. Hope it is of interest.
Barbara
Barbara Wilson-Clay, BS, IBCLC
Private Practice, Austin, Texas
Owner, Lactnews On-Line Conference Page
http://moontower.com/bwc/lactnews.html
Barbara Wilson-Clay, BS, IBCLC
Private Practice, Austin, Texas
Owner, Lactnews On-Line Conference Page
http://moontower.com/bwc/lactnews.html
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