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Reflux Baby doesn't eat or sleep

my son is almost 8 months old and was diagnosed with reflux at three weeks.  He used to spit up a lot but now he doesn't.  He's been on everything you can name- pepsid, rice cereal, prevacid, nexium, reglan, mylanta, zantac but nothing seems to work.  He is breast fed pumped breast milk (he has always choked on my breast) and I use a premie nipple on the  bottle.  At around 4 months he started to refuse the bottle (breast milk only) at around this time I also tried introducing him to formula (Isomil soy) but he got so sick that I put him back on breast milk.  I don't know if was a coincidence or if the formula did some damage but it is extremely difficult to feed him now.  He's had an upper GI barium swallow, endoscopy with biopsies, and ph probe.  They all showed severe reflux with high levels of acid but no damage to his esophagus.  He is a poor sleeper.  Every night is different, but sometimes it so so bad that I need to carry him the entire night so that he can get some sleep. He'll wake up every 20 minutes, 30 minutes, every hour.  He cries in his sleep and bends over in pain.  he also shows sign of sandifer syndrome.  He is also severely constipated.  he is on 2 tsp of miralax(stool softner) twice daily and he still has a hard time pooping.  I only feed him pears and prunes and sometimes oatmeal cereal with B/M.  He takes 2 naps daily for about 30 mins.  He grunts all day and cries all night and it has always been this way.  I told his pediatrician and gi that I felt solids made it worse but they said to continue with it.  I don't know what to do anymore.  I am losing my mind.  I'm lucky if i get 3 hours of sleep.  I feel like I'm just going to die unless he improves.  Does anybody have advice?
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Avatar universal
Agree with 1st response.  If your son has a GI Ped, request some Neocate Infant Formula (Elecare didn't work as well for us).  Stop breastfeeding.  If you want to continue nursing you will have to do an elimination diet for at least 2 wks before resuming nursing---that means no soy, dairy (watch for casein and whey), wheat, shellfish, eggs, tree nuts, and peanuts.  You will have to read every ingredient you put in your mouth.  It takes at least 2 wks to get dairy out of your breast milk.  I tried the elimination diet and after 2 wks of this I couldn't produce enough milk any longer to feed my son and ultimately it wasn't worth it b/c there was no way to tell what exactly was affecting him.  He did great on Neocate.
He's also had the upper GI and endoscopy.  He was given Prilosec and Zantac.  He's 15 mos now and still on Prilosec.  Zantac didn't help.  He stopped spitting up right after his endoscopy (7 mos old).  Avoid Prevacid, the liquid formula is milk based.
For the rice cereal, use either Earth's Best or Beechnut.  Gerber's rice has soy in it.  We used to put rice cereal in his bottles to add bulk to his formula but it didn't help.  It's often suggested though so it must work for some.
It sounds like your son is in pain, I really think the Neocate is the place to start.  It's expensive but your sanity is worth it.  You can order it online at www.Neocate.com  and find coupons by typing into Google "Neocate coupon codes".  Also, your GI Ped should be able to stock you up initially.
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Avatar universal
Went through the same thing. Used Similac Alimentum. My son eats sweet potatoe, squash, pears, prunes, pears mixed with pineapple, pears mixed with wild blueberries and oatmeal. Rice Cereal constipated too much. My son drinks water with 1 teaspoon Miralax, once in awhile I help him with liquid Glycerin. He used to sleep on top of me for the first 4 months, now sleeps in elevated crib (2 pillows underneath the mattrass. He takes half a Prevacid in the morning and a little bit Zantac in the evening. I dance/rock him to sleep for naps, when he used to wake up after 30 minutes, I would get him immediately and rock him back to sleep and lay down with him. He now at 8.5 months takes 2 naps for 1.5 - 2 hours. I put him to sleep earlier 6.30 PM, he eats solids at 5.15-5.30, then we play, followed by bath and relaxing massage and then a bottle, I keep him upright as long as possible. For the feeding at night, I do the same thing. He has been sleeping better for the past 2 weeks, only one night time feeding and then again at 5.00, which he goes right back to sleep afterwards. Hang in there, it will get better, I never thought it would, but it did. If he has a bad night I keep him on top of me and it is better. Oh and he always sleeps on his stomach.
Good luck to you and your baby!!!
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Avatar universal
  Sounds like good advice from KD9ER. I would like to add trying digestive enzymes, and maybe slippery elm. Great stuff to soothe digestion and heal the intestines.
Oh, and definitely keep him off the soy. It's toxic stuff! Should be banned.

Enzy
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586424 tn?1232176659
I know where you are coming from.  My son was very similar.  He differed in many ways, but the sleeping issue.  My heart goes out to you.

First...have him tested for specific allergies.  Milk, soy, eggs, grains...etc.  The basics.

Second...request NeoCate or Elacare from your GI.  Also request long-term treatment on Prilosec (suspension liquid) until it is under control.  Or you can try Aluminum Free Baking Soda.  It is a wonderful remedy.  Disolve it in water and feed it to your son in a bottle or sippy cup.

Third...weigh his food with RICE cereal.  Take him off Oatmeal.  Oatmeal is a complex grain and difficult for most GERD babies to digest in single grain form.  My 2 year old still can't handle Oatmeal Infant Ceral Single Grain.  Start by weighing it with 2 tsp per ounce of formula.  If that isn't enough it's ok to work up to 2 Tbsp per ounce.  Yes it gets thick so find a good sharp knife and cut X's in the top of the bottle nipples.  The more full the stomach with less liquid only food the better the acid is controlled which is why your PEDs and GI are telling you solids.  It does not hurt your child.  My son has been on size 2 Jars since 2 mo old.  He's a very healthy and happy boy who sleeps through the night.  

As for the constant constipation---try warming 4 ounces of water and then adding 1 tsp of Clear Karo Syrup to it and feeding it to him in a bottle.  He can have as many of these as he can tolerate in a day.  Within 24 hours he should be easily passing stools.  This could be from so many reasons...a common explaination is that his GERD is so severe that vital nutrition is being eaten by his stomach and not being passed into the bowels to keep the healthy bacteria alive in his intestines.  Then the stomach acid passes with the food and destroys those villi that aid in passing food through the small intestine.  The Karo Syrup provides a natural coating to the intestines and is sweet tasting to a baby---so you usually have no problem with them drinking it.  Water is perfectly fine for you son to drink at any point and age.

What bottles have you tried?  Sometimes it is an issue with the baby preferring the feel of the breast to that of the nipple of a bottle.  There are various brands out there that are very similar to the breast and you can buy a single pack to try it out.  Also sometimes it's the simple fact that the suction is different between the bottle and breast.  If you haven't tried a bottle that uses a bag, then I'd start there.  It's on the cheaper end.  The Adiri Nurser is a wonderful bottle and it's breast-like.  You might also want to try having your partner/spouse/friend etc... try feeding your son.  It might be he already associates mommy with breast and won't take the bottle as it is considered second-rate to him coming from you.  I was that child.  It took my mother a year to get me off her breast and by age 2 I just gave up on anything else and went straight to a cup.  

Let me know if any of this is helpful or if you need more advice.  I really do hope this helps.  BTW--the Moby Wrap is a blessing for children/infants up to (35lbs).  You can sleep while they are comfortably attached to you.  I gave in and bought one after too many sleepless nights and sore arms.  It even helped to get some chores accomplished when my son wouldn't let me put him down.  I still use it!  :)

-K
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