I have permission to post for information. Have searched the archives and found nothing on this genetic disease.
We have a 26 y.o. mother with Machado-Joseph Disease, also called spinomuscular atrophy. The chart labels it at Type 3. References conflict, indicating she might be Type 1 based on symptom onset in mid-teens. She is wheelchair bound. She has assistance at home. Her legs cramp up to a ballet-toe point. She can bring her arms to her chest, but doesn't have much strength.
Mom is G1 P1001. Labor began with artificial rupture of membranes, augmented, epidural given, demerol given, arrest of dilation led to primary transverse c/s in vertex presentation, June 14 at 1619 hours.
Baby is LGA male at 4376 gms, or 9lb 10.4oz, born at 41 4/7 weeks, rated Level I, although he has a "weak suck". I have not seen him feed on breast or by bottle. Nursery RN says he does better with Nuk nipple. Dad has asked for LC help at next feeding time. Keeping baby warm may be an issue. Mom requires a large, high-speed fan blowing on her constantly. Makes me cold.
Although mom says she wants to BF, she has attempted only once. She has asked the nursery to feed baby other times because she was too tired. She looks exhausted; takes an effort to open her eyes and look at me as I explained to Dad how to assemble the pump kit and find mom's comfortable vacuum setting.
Have not found issues with medications. She is on Vistaril and Heparin, both rated L1 in Hale but neither reviewed by the AAP.
And words of wisdom or helpful suggestions re pumping / breastfeeding?
Thanks.
Phyllis Adamson, IBCLC, RLC
Phoenix, AZ
***********************************************
To temporarily stop your subscription: set lactnet nomail
To start it again: set lactnet mail (or digest)
To unsubscribe: unsubscribe lactnet
All commands go to [log in to unmask]
The LACTNET mailing list is powered by L-Soft's renowned
LISTSERV(R) list management software together with L-Soft's LSMTP(R)
mailer for lightning fast mail delivery. For more information, go to:
http://www.lsoft.com/LISTSERV-powered.html
|
