23 months now and no hope in sight

**So here
is the current problem I really
don’t know where to go now.

Starting
about the first of June he began having gulping that was more noticeable. Once even had milk come out of his nose. July
23^rd that week he began drinking less and less. By July 27^th we were down to sips
here and there. Diapers were totally dry
for sometimes 8 hours. Thank God I
finally got him to drink some Elecare from a bottle while he slept (dream
feeding). Saw the Pedi GI and she
started Carafate 500mg (5ml) twice a day.
He started drinking better in the mornings but after lunch no go. Just sips here and there. A week later increased Carafate to 3 times a
day. He will eat solid food, sometimes
eagerly even, sometimes ok but not bad.
Especially Cheerios! He ask for those constantly. A week later, still screaming out in the
middle of the day while playing, gulping and refusing his Elecare he usually
drinks. Saw Pedi GI doctor again. Weight check-not much of a change. While we were in her office ds was sitting
playing with a toy he loves. Suddenly he
just screamed out, but kept playing. I
called it to her attention, however she didn’t say much about it. Now maybe my child is just “difficult” and
having behavior issues. However he was
not doing this several weeks ago and it just happens to occur at the same time
he won’t drink?? I don’t think so.

I asked questions like: ds has only ever been on Prevacid, and only
7.5mg twice a day. Maybe we need a new
PPI (she said she didn’t think so); is there a test that can check what happens
when he is eating or drinking his formula all the way down (I was thinking milk
scan) she said no.

What the doctor said: She
thinks this is all allergy or food intolerance.
So the next day I took him for allergy testing—all skin pricks done
where negative—no reaction at all. She
wrote Rx for Periactin b/c it had histamine to help with food intolerances and
also stimulate his appetite. (I didn’t know stimulating his appetite would help
him drink, but ok I will try anything right now—I have read Periactin has
helped some people).

Here are some of his symptoms he has experienced in
the last 23 months

-Hasn’t
slept more than 1-2 hours at a time without waking suddenly screaming/crying
since he was about 5 weeks old.

-inconsolable
at times during the night, just kicks and screams no matter if I hold/rock/pat
etc–then just suddenly stops, until the next “wave” hits–looks like
the you tube video “reflux arching”

-distended
belly that has been better since about Feb this year

-arching
back–still at 23 months old when drinks his Elecare (from a bottle-yucky stuff
won’t use sippy cup for this stuff) he twist/turns kicks after about 2-3oz

-some
mild eczema until about 12-16 months

-thin
stools (mostly before age 1) or constipation, esp now with solids

-once
he learned to walk, would be on me (climbing on me and clingy), then sudden
fine to play for a few minutes, repeat

-in
motion almost constantly (just like his sister who has no delevopmental
delay/issues) it’s like wrestling with an alligator when he is awake-wants in
your lap, no wait I want down, no up..down, that had been better between Feb
2012 and first week of June.

-gulping
(a few weeks ago milk even shot out of his nose–that is unusual),more
noticeable in last 6 months

-screaming
out in daytime while at play (sometimes inconsolable) but sometimes we can
distract-WORSE in last three weeks, may take a Bubble Guppies episode-thank God
for Bubble Guppies- have even used them at 3am!!

-has
been hospitalized twice for dehydration and refusal to drink (first time with
vomiting occasionally, but not last admit) even after Prevacid, Bethanechol,
zofran.

I
have never noticed obvious blood in his stool, however once he had a lightly
positive occult test at the doctors office.

TEST-he has had an endoscopy x2, colonoscopy–both
“normal”; upper GI showed immediate reflux and they thought maybe
malrotation–repeat no malrotation but a redundant duodenum–Saw the surgeon
he said it was just a “normal abnormality and that we all look different
inside just like the outside”. Sonogram of abd-no signs of malrotation
(while there I asked the tech to check liver, galbladder and kidneys–all
“normal”. No he has NOT
had an Esophageal pH probe with impedance or a “milk” scan

*when
is he better?–the times after he was in the hospital and had not had anything
to eat for 12-16 hours, 1st time he was better for several days (even slept 5
hours one night!!). This last time when he was admitted in Feb(refusal to
drink) he was better until about first part of June. Now when I say better, I
don’t mean he was sleeping well or I was able to feed him everything in site. I
just mean he could play on his own, and didn’t need to be “on” me constantly
and he didn’t scream out suddenly while playing. It was so nice to see my child
sit down and “read” a book or play with a toy independently.

Meds we started off with Zantac, added Prevacid
7.5mg twice a day, added Bethanechol, stopped Zantac, after first
hospitalization increased Bethanechol, add Erythromycin to “get him
eating” again (there were sure it was just a virus he couldn’t get over).
Stopped Bethanechol and Erythromycin b/c that might be causing cramping that
caused the night wakenings with kicking, arching and screaming–kicking/screaming
stopped eventually but still wakes suddenly and cries. Somewhere in there we
tried Axid too. Miralax is a must with solid foods. I breastfeed in the
beginning and at one point was elimanating dairy/soy/eggs/nuts from my diet. At
9 months old we started Elecare-some difference after 5 weeks, but not great.
Still on Elecare. Now Carafate and Periactin with his Prevacid and
Miralax. Oh, he also takes Propranolol
for his hemangioma. Not much fun keeping
these at least 2-3 hours apart, eat or not eat with them.

What he eats: Elecare
vanilla jr formula, soids in the evening baby food stage 1 beef, stage 2 pears 1 jar a day, cheerios and pasta
(regular, not wheat)—–applesauce doesn’t seem too bad (but he has
constipation issues too), seemed a little off with squash and maybe turkey, but
not bad. I can not tell you all the combinations of foods and textures we have
tires, it would take way to long. (as if this is not already too long). I have never specifically found a food that I
thought boy I am never giving that again or boy that really bothered him. Seems
like it is more the quantity more than the food type. However 3 days prior to the start of all this
I gave him sweet potato (2 tbsp), but have not given it since. Wouldn’t he be better by now? I so just want to feed my child a normal amount.