Lisa,
I tried to help a mother of eight children who all had
osteogenisis imperfecta.  They were put into a study at the
University of Utah which was funded by the milk industry.  When
it was found that these children dumped calcium in there urine
whenever they ingested milk they were eliminated from the study.

  None of the children thrived on breastmilk. I was a very new
LLLleader then and reffered the mom to my APL who became stumped
as well.  The children became alive so to speak when they began
taking Nutrmigen sp.?. Anyways, she probably still searches for
info. on this osteogenisis prob. (she searched far and wide-
this woman even did research, reccomending tests to do etc., she
was an inspiration in determination).Can I share your post with
her.  There may be some clues in there to go with.  I haven't
spoken with her in three years.
-Joyce Mitchell   [log in to unmask]


Lisa Marasco, IBCLC wrote:
>
> I have a mom who is nursing twin baby boys, #4 and #5. She has previously
> successfully breastfed, and wants very much to breastfeed these two also.
> However, in the interval after #3 was born she broke her hip, and in the
> process it was discovered that she has a rare congenital condition that has
> been labeled "osteogenesis imperfecta tarda".  She explained it as that her
> bones did not develop and calcify normally during her childhood, and so she
> now is osteoporitic. She had taken didronal (sp? mother unsure, not in my
> books) until the current pregnancy, but this drug was only marginally
> helpful. A new drug has come out on the market called Fosomax (hope the
> spelling is right here!), and it actually helps to increase bone mass.  She
> was given two months to breastfeed, and then told that she would need to wean
> her babies so that she can get on to this drug.
>
> Does anyone know about this drug? I need to find out whatever we can, and see
> if mom has any options. Babies were born at 37 weeks weighing 7lbs and
> 6lbs11oz, healthy, and are currently 12 days old. However, a prenatal
> ultrasound showed an enlarged kidney in one baby, and a repeat ultrasound
> today showed the kidney still enlarged, necessitating surgery to search for
> blockage in the very near future.  I am also cc'ing this to Dr. Hale, and
> would appreciate any and all input. Recommended dosages are not yet known.
>
> -Lisa Marasco, LLLL, IBCLC
> [log in to unmask]