Aloha,

I am helping a mom (an old friend who now lives on the Mainland USA) whose
third child was diagnosed with Spinal Muscular Atrophy at 12 months of age.
The child is now 14 months old and was recently hospitalized as doctors were
worried about weight loss.  I understand this is a problem for these
children.  The child reached 17 lbs max and by 14 months came down to 14 lbs.
 Child also had the flu which didn't help.  Child still breastfeeds, but will
only take pureed solids.  Child received feeding tube in hospital and has
gained a pound in the past week and will be discharged with a gastro feeding
tube.

Mom has also had to cope with a new diagnosis.  The specialist says that the
baby is considered and overlap of Type I and II of SMA.  Mom was previously
told Type II.  This now means that child will probably only have a lifespan
of 7-10 years.

The doctors are pushing weight gain, which mom understands, however even her
unafflicted children were never 22 lbs at 14 months---which is what the
doctors want.  Doctors want mom to feed kindercal (Mead Johnson) for weight
gain.

Doctors are not discouraging breastfeeding, but not giving it much notice
either as being important  to the child.  Mom was hoping to do more with
breastmilk, i.e expressing for hindmilk to add to feeding tube, etc.

I was wondering about the fortifier that is mixed with breastmilk for
premies.  Would this be a possibility under these circumstances?  Mom also
became pregnant through all this.  She is 12 weeks.  I did not think that it
would be a good idea to be pumping while pregnant.  She's been experiencing
contractions.  What is the concensus for pumping before supply really drops?
Mom plans to continue giving her milk to this child after baby #4 comes
because she knows the importance.  She would like it if all the specialists
would feel the same.

I would appreciate any suggestions for helping with weight gain.  This child
is receiving physical therapy and will be starting some experimental drugs
soon.

Aloha,
Gloria Thai  Honolulu, O'ahu, Hawai'i about 20 degrees N of the equator

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