Angel’s Testimonial

Angel’s testimonial, by Mary Young.

Hello, My name is Mary Young and my daughter’s name is Angel she has
SMA type 1 and was Dx’ed when she was around 5 months, she never sat
up, rolled over, did the mini push-up, the only thing I can say she
did was held her head up until around 8 months, then that too was
lost.
At 6 and 1/2 months old Angel had a gtube and nissen placed, she had
lots of issues with reflux and was on zantac at the time, after the
surgery, she didn’t have much reflux, until she was around 10 months
old, then she threw up and as you know with a nissen, she shouldn’t
have been able to do that. The doctor stated that we would try her on
prevacid, a PPI drug, I agreed, it seemed to help in the beginning,
but when Angel turned 1 we put her on pedisure, I saw quickly that she
could not tolerate that at all, she was always trying to throw up and
cried when I went to feed her, so after a 1/2 month of that we
switched her to peptamen JR. that seemed to be better, but still she
wasn’t happy with it and after a few months she started to do the same
thing, cry when I fed her and seemed sick only in the morning, so we
thought it was alleriges and put her on allergy meds, it did seem to
help for a week or so, plus she wasn’t getting enough calories, so the
dietitian thought we should put her on peptamen JR 1.5, after a few
days Angel became very sick, weak and throwing up, crying and nothing
I did made it better, I took her to the Doctor and we decided to
change her diet again and before we could change it, I took her to the
hospital, I thought that maybe her bowels were blocked, that is how
much pain she was in, after x-rays, it was discovered that she had
gallstones (which more than likely caused by the Prevacid) and 2
dislocated hips (related to low tone), I spoke with the Doctor on the
phone and he gave me the results just as soon as the x-rays where
taken and he wanted to put Angel in the hospital, for possibe sugery
after she sees the GI doctor, but I opted for going home and making an
appoinment with the GI doc, so that’s what we did, but the gallstones
threw me for a loop, and after talking with other parents and Mary
Bodzo, (people who actually deal with SMA), three things, maybe all
three could have caused Angel’s gallstones, (1) prevacid the PPI drug,
(2) peptamin Jr. (Diet) and (3) Lack of movement, which i move her all
the time, so go figure! I changed Angel’s diet ASAP with Mary Bodzo’s
help, I will admit, I was scared because I didn’t know much about it
and was afraid that I might make things worst… But I didn’t have
much of a choice, so I changed it. After seeeing the GI doc, he said
we could try putting her on a med to see if it would shink the
gallstones, but after all the proplems the Prevacid caused I opted to
just change her diet first then we could look into meds and possible
surgery if absolutely necessary, and I also started to wean Angel off
of the Prevaicd,(It took me a couple of months to wean her off of the
prevaicd, the doctor said to just stop it, I tried that and Angel got
really sick, with N/V, so I took her to 3/4 tablet for about 2-3 weeks
then to 1/2 tablet for about 2-3 weeks, then to 1/4 tablet for 2-3
weeks, until she could safely come off the Prevacid.), she went for
night to day, her movement inproved and I noticed that she had less
secretions, her crying at meal times went away and I was able to get
more in her, Angel could never tolerate to much fluids, but with the
AA diet, she could tolerate about 4-6 ounces more right from the
begining, she has been on the diet now for about 3 months and has done
great, no more reflux, no more prevacid, no more crying with meals and
she even wants to eat more by mouth,( she doesn’t eat, just taste it.)
I am still new to all of this but, I know I made the right choice for
Angel, she has done so much better, I’m just sorry that I put her
through so much because I didn’t know and she suffered because of it,
I’m not telling anybody to switch their childs diet, I’m just sayin
that I think it was the best choice I made for Angel.. She is doing
good right now and just got over pneumonia without hospitals and I
think it had a lot to do with her diet. Since changing Angel’s diet
her gallbladder/gallstones haven’t seemed to bother her, So I guess
the diet and dropping the prevaicd made a huge difference, SINCE THEY
ARE WHAT MORE THAN LIKELY CAUSED THE GALLSTONES.
Just to sum things up, Angel was on Prevaicd, PPI drug for about a
year too long, healthly adults should only that this drug for no
longer than 2 weeks, and Angel in my opinion was on the wrong diet, NO
SURGERY for gallstones, so I guess it’s a win, win for us for NOW, I
know I will never do everything right but I’m glad that with Help I
fixed her diet and took her off the PPI drug, Thanks Mary Bodzo.