~Preemie Parent~

not_finished

I was given your name by lstaylor, and she thought that you might have some information that might help us.  We are at the point of desperation.

I have 7 month old twins that were born at 37w1d.  While one has progressed normally, albeit on the small side, the other one is really struggling.  He was diagnosed with severe reflux at around 2 months of age.  At 4 months, he had to have a Nissen done, and had a g-tube placed.  Since then, we have graduated to a gj-tube.  He cries all day and night long.  This is by no means an exaggeration.  The longest that he has slept in one stretch is 2 hours.  He is usually awake within 15-30 minutes of sleeping.

He is on Neocate through the gj tube.  We did a 24 hour trial of Pedialyte only, and he did great.  We then tried a Neocate and Pedialyte mixture to make it 10 cal/oz to see if it the calories were the problem, or if it was the actual Neocate.  The screaming continued.  They are now concluding that we are looking at a Metabolic Disease, and we are waiting for an appt with the specialist.  His weight is also a HUGE issue.  He is 7 months old and currently weights 11 lbs 11 oz.  He weighed 10 lbs 12 1/2 oz at his 4 month check up.  When we aren't experimenting, he is on 30 cal/oz formula for a total of 560 calories per day, although our goal is around 650. 

Laura thought that you knew of a formula that was even more elemental than Neocate.  If so, my GI isn't aware of it, but I would love to run it by him.  Any information that you can provide would be greatly appreciated.

I am so sorry that this is so long, but I didn't want to leave anything important out.  If you prefer, you can email me at:

shawnamcelveen at yahoo dot com

Thank you in advance for any information that you might have.

 

 

 

preemieparent

I'm so sorry things have been that rough.  

My mom (who is a dietician) is at choir practice right now so I have to wait to ask her about formula.   Since I know what she's going to ask I thought I would get ahead of the game.

What formulas did the doctors try before Neocate?

Have they tried Alimentum or Nutramagen in case there is an allergy issue?

Is he on any meds for reflux?  My daughter had a nissan done as well however she is still on Prevacid and Erythromacin to try and stop the gagging/heaving/choking.    When he had the g-tube, was he fed by pump or bolus feeds? 

Did the rate of feeds have any affect on his symptoms (i.e. slower rate = less gagging/pain).  

Have they checked the fundo to make sure it's still tight and in place?

I'm sorry I don't have any suggestions for you yet.  I'll talk to my mom and post or email you either later tonight or tomorrow morning.

Sending big hugs to you.  I hope they figure ou the issue and fast.

not_finished

We have tried most formulas.  We have been on Enfamil, Prosobee, Nutramigen, Nutramigen AA, and now Neocate.

He has taken: Prevacid, Nexium, Bethanechol, Carafate, Eryped, Reglan, and something for colon spasms.

He is now on Carafate, for an ulcerated spot found inside his stomach.  This hasn't helped anything.

I believe that he has dumping syndrome as a result of the Nissen.  When we were still on the G, he had several times a day where he would get very pale, sweaty, and scream.  I will be asking for a gastric emptying study to be done before we switch back to g feeds.  When we had an upper gi done, the technician commented on the fact that the dye went straight into the intestines instead of filling the stomach first.  While he still cries all of the time, switching to a gj fixed those symptoms.

He has always been fed with a pump.  We have experimented with different rates.  He is currently on 23 ml/hr via the j tube. 

He never vomited, and only rarely spit up prior to the Nissen.  We did have a 24 hr probe to confirm the diagnosis of silent reflux.  We did the Nissen because he was aspirating.

 

 

preemieparent

I talked to my mom.

She said that Neocate is one of the most elemental formulas.  Although Vivonex is another one that you could try.  They are both modified protein based.

She thinks the best thing now would be to see the metabolic specialist.   Based on what they find, there are highly specialized formulas that can be prescribed.  Those may help the issue because they will be based on whatever issues your little guy is having.   You really have to know what you're dealing with before prescribing those.    Has your doctor called to try and make the appointment?  Sometimes that will get you in faster than if you the parent calls.

The only other thing that she said you could test out is if he's allergic to corn syrup solids (Triciajoy can tell you about that).   Neocate and most other formulas do contain corn syrup solids so if he was allergic they would all pose an issue.

She did say that while his weight/growth isn't ideal, it's not horrible.   She has seen much worse. Hopefully once you figure out what's going on things can get worked out he can grow at a regular rate quickly.

BTW - have you tried probiotics?   For Olivia that was one of the recommendations someone gave us along with Carafate.  An increased Prevacid dose did it for her so we didn't have to use it but supposedly it's not harmful and can help some kiddos.

Take care!