Newbie who needs help:-(

[Anonymous]

Hi Everyone!
I am new here but I have been dealing with what I thought was mild reflux for about 4 months now.
Little History….
Aaron was born at 31 weeks with something called choainal atresia (sp) basically his nose was blocked with bone…not so fun..He was little 3 lbs 7 oz so we had to wait with him intubated in the NICU for almsot 2 months for him to grow and get the surgery to fix it. Got that done but at that point he started throwing up through is nose…..then they said ow my he could have had reflux this whole time and because he was intubated and and his nose was blocked we never knew…..so we started zantac and reglan and it seemed to help. Fast forward he would not extubate he had a very damaged airway which they now think was from the untreated reflux…so we got trached and started working with an ENT. Aaron came home on zantac and reglan and we got him eating and growning pretty good so we pulled the ng tube and went to all bottles. A month later he hates eating and vomits like a champ. So we work with the ped. to try some new stuff…. move the bed up and do some reflux precautionary things. A little improvement not much…..
Went to the ENT last week and aparently his airway is much worse and looks like severe reflux….so we had a GI doctor at CHOP (childrens in philly) check him out and they did upper GI to see if he had all his parts in order..that was normal and he also had a swallow study done and that was normal while in the NICU.
So they trippled his prilosec took him off zantac and then said we would come back in a few weeks.
I feel so bad he hates to eat and he is gaining weight so slowly. We give him alamentum with cereal in it to max his calories and try to keep things down. He will only eat in his sleep now….so weird and never takes large amounts.
Questions:
What else could I be doing?
Any formula suggestions?
Who are the really good GI docs? (in the greater Philly/Hershey PA area)

I just feel like if I could get his reflux under control and get him to eat and gain weight we might stand a shot at getting rid of this god awful trach.

Any suggestions would be great!
Thanks!
Kris 🙂

[Anonymous]

Kris,

Wow..you’ve been t hrough so much!

Let’s see if I can help at all. First of all, is your child still on Reglan? My twins symptoms got worse on Reglan. Reglan, just like all the other drugs out there have alot of side effects, I think reglan has more than most of the ppi’s, but each child is different. So, my point is, if you are still using reglan, perhaps stop it briefly to see if there is any improvement.

Neither of my twins did well sleeping on sleep wedges or any kind of slight incline. What got them to sleep and to stay asleep is for them to sleep in their car seats. It was almost l ike they were relieved. Connor no longer moans and groans all night long. The ped said it was fine too, they actually recommend it for severe reflux.

As for the vomitting, haven’t been able to stop that yet. We did prevacid…hated that, zantac, worked briefly, reglan, hatedthat too. Now we just started zegerid, so if that stops the vomitting, I’ll let you know. Although, in all honesty, I can deal with the vomitting if I could atleast get the pain to go away for them.

Kristen Pearce

[hellbennt]

I replied to your other post

[Anonymous]

Hi Kris,

My son has the same issues – drinks from a bottle only when he’s asleep. We’re in the Los Angeles area, and our GI specialist recommends that we work with a Pediatric feeding specialist. They’re occupational therapists who work with infant feeding problems. Don’t know if you have people out there. Insurance pays for most of it.

Doctor recommends that we start solids early, at 4 mo. to start getting him used to using his tongue more. Therapists also will teach us mouth exercises to help him w/ solids when the time comes. They say not to expect Clark to like the bottle much going forward….

Until then if baby is not eating much, then add Human Milk Fortifier to breastmilk or use 22 Calorie/Oz. formula (i think these are pre-term infant formulas – ask your doctor), to ensure growth. http://www.enfamil.com/products/formulas/i_1_11.html Therapist says that adding rice cereal to formula often worsens the reflux sypmtoms from her experience (15 years).

Good luck! My heart goes out to you and Aaron.

-Helen

[Author]

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