Mucousy puke and response to Janet (don't eat while reading....)

[Guest guest]

Janet,

We had a similar problem with Mallory as an infant, though she did have GERD

and boy did she have it! (but, then, that was not a huge surprise, as so did

her older sibs as babies). Of course with Mallory, we did not know she had

CF at the time, but they had still ordered CPT because she needed it (um, now

we know why). With her, we also found out that she had VERY delayed gastric

emptying, so even when she was older, and even now, there is no time that her

tummy is not full. GERD does seem to be exacerbated by CPT, so I guess it is

nice when you don't have to do it by necessity. We did stop it, on and off,

in Mallory's first year b/c her reflux was so severe (didnt cause weight

gain probs though, as she would just eat again and again and again...lol),

but it did cause even more lung probs b/c of aspiration. We reached a point

where the pulm. was demanding the GI do more about the reflux,a nd so was the

ped. (I believe the exact quote was, I don't know why we are letting her

continue throwing up like that) She was already on propulsid and prilosec,

and we also tried reglan. They wanted the fundoplication, and of course, we

did not. The GI doc was insistent that if they did the fundo they would also

have to do a G-tube to allow for gas to be expelled via the tube, etc etc and

it was basically a huge mess. Plus, at one point, the pulm was blaming the

cough and lung probs on the reflux, and of course the GI doc said all the

mucus and the cough was exacerbating the reflux. In any case, I guess my

point is it is a double edged sword. We finally settled on not doing any

upside down type of cpt, only while sitting up (or lying on Mommy's chest,

for example).

Anyway, I don't know if it had anything to do with her not getting cpt as

much or not, but when she was finally diagnosed with CF at 15 months and she

was bronched, they pulled out what they called bronchial casts, where the

mucus had grown into the airways, and showed them to us in the vials. Ron

and I vowed at that time to never miss any cpt ever. I am not saying, of

course, that you did the wrong thing, as you said that your daughter did not

need the CPT, and Mallory obvously did (or why would they have had us doing

it on a child that was not even diagnosed with CF?). I guess I am just

saying that it is a double edged sword. I am not sure if I remember who told

us this but some doc along the way did tell us that you should not ever do

the head down positions on children with GERD. Thankfully, we now have the

vest for Mallory. Incidentally, though she does not puke almost hourly

anymore, she still manages to do so several times a week....and if it

increases more than that, she needs more enzymes (interestingly, the day she

started enzymes, the puking stopped almost entirely....one doc, not our

regular doc, told us this is an unusual presentation, but they see that

sometimes instead of the pooping stuff). I wish I could remember who told us

about the head down positions being taboo for kids with GERD, but can't

remember right now.

Someone on the list mentioned the puke being filled with mucus...yes,

Mallory's is always this way. The new CF doc in our practice said that there

is mucus in the digestive tract, too, plus the swallowing of it. UM, we

described it for him ......this is gross, but it always seems to happen at

restaurants, and in my hands at least half the time, til it runs over. But,

it doesn't go through my fingers or between my two hands b/c of all the

mucus. You can pick it all up in one peice, in fact, to get it off, say..my

lap, or Mallory's lap, or the chair, with a napkin or with your hand if

desparate....thats how mucusy it is. I think it always seems to freak the

restaurant people out, except at our favorite restaurant, where the waitress

really likes our kids (and our big tips? geez, after puke, what can you

do?). Anyway, she has taken to bringing Mallory an extra/ empty food basket

lined with napkins, just for her, lol. I guess its like half gelled jelatin

or something. Pretty gross, but you get used to it. Hope no one lost their

dinner on this post.

The only suggestions I have for you new moms with puking babies (and after

5 biological kids, all with really bad GERD, we finally learned....) are to

carry beach towels with you every where you go, an extra shirt for Mom plus

clothes for baby(before we got smart, with Miranda, I honestly own a shirt

from every restaurant we tried to take Miranda to, lol).....an extra infant

carrier /carseat in the trunk (the first time the child fills the carseat,

you will really wish you had this!!!!!) It wasn't like baby spit up at all,t

he sheer volume continued to amaze me, even with baby number 5. The

projectile nature doesn't help, either. So....those handy cloth diapers and

baby spit up type products, just throw them away and buy cheap 5 dollar beach

towels at walmart, they offer much more protection, lol.

OK, enough rambling...thanks for the memories guys...even though some are not

so recent, it was just 3 days ago that Mallory puked in my hands at a

restaurant. The worst time was at Ruth Crists, of all places....we had taken

Mallory to UAB and stayed in a hotel that happened to have a really nice Ruth

Crists restaurant there, but, of course, she did thepuking in my hands thing

and ron lost his onion ring basket to the cause. I don't think they were

really happy with us after that, but, oh well......

Take care, and hang in there, most kids outgrow it sometime after the first

year. Thankfully, this seems to be the only area Mallory shows some delay

in, lol.

Jen

Mommy of 7, including ph 23 months with CF( my gosh, can you guys believe

he will be 2 next month???), Mallory 3 with CF, RAD, GERD, OSA, port-a-cath;

5 with CF, port-a-cath (finishes his 21 day iv tuneup on Wednesday,

yipeeeee, just in time for us to move!); 6, Miranda 9, Brittany 8 yo

foster daughter with Type 1 diabetes (juvenile diabetes) soon to be adopted

by us; ERica 4 yo foster daughter, soon to be adopted by us also ; also aunt

to 4 yo with CF