Well, to start, I'm only the grandmother, not the mother. But needless to say, we're both at our wits end. Jordan is 9 months old. He was born in July 2003 by Csection 3 weeks early- his mom had preeclampsia - had to be induced - dilated to 9cm after 24 hrs- then taken Csection. Weight 8 lbs 6 oz. Tried to breast feed, couldn't get milk out - inverted nipples. Healthy baby? Yep, till we got him home. Then the "rollercoaster ride" began. Thank God she lives with me. She'd be in the nut house by now by herself. Husband - no help, can't handle the load of responsibility that came with baby. They are separated now. Jordan began arching his back and spitting up and vomiting -never sleeping more than 1 hr. at a stretch - at around 6 days old. Went to the doctor - same old song and dance - colic. I hate that word. Dr.'s use it when they don't know or don't care what's wrong. (I know I sound mad, but I'm not, just worn out). After 3 different Dr.s telling us "nothing's wrong", WE changed his formula. Tried Enfamil, Isomil, Nutramigen, you name it - still no better. At 4 weeks, I called and begged the only Ped. GI doctor in town to see him. Their waiting list is 2 months long for an appt. I cried so hard and begged so long, the secretary worked us in that week. FINALLY - THANK GOD - somebody listened. Dr. Gremse was a God-send! He tested him for blood in his stool, and sure enough, it was there, even though we could not plainly see it. He did an upper GI, and a colonoscopy. He had lesions in his colon from the formula allergies, and he had acid reflux. Jordan was started on Zantac and Neocate at 5 weeks old. We were told to try cereal in his bottle. He could not and still can't tolerate rice cereal. The meds did help some, but not enough. The Neocate immediately constipated him, and he had to begin a laxative every day. At around 3 months, he still only slept maybe 2 hours at a time. Still spit up- but not as bad. At 5 months, Dr. Gremse left to practice in another state. His partner - still the only ped GI in town, started Jordan on Prilosec along with the Zantac, and the combination of both seems to work. No more spitting up. At this point, we are still trying to get him to tolerate ANY foods. Finally, he began to tolerate applesauce, but the baby STILL DOESN'T SLEEP! We finally discovered that the Neocate was causing him to have impacted bowels, even with the laxative. Tried Alimentum at 6 months, he vomited it immediately. Tried it again at 8 months, and he tolerates it well, but he still has to have laxative to have a BM or he gets backed up. Our nights are very hard. Never sleeps more than 2 hours without waking up, seemingly in pain. He practically jumps himself awake. During all this, he had 6 ear infections. Tubes were put in his ears April 8. He still doesn't sleep. He still can't tolerate anything more than applesauce, carrots, peas and sometimes sweet potatoes. Each time we try to introduce a new food, he's up even more at night. Bananas? No. Rice cereal? No. Pears? No. Plums? No. Prunes? No. He is a beautiful, smart, alert baby. He is so active all the time - you can't take your eyes off him for 1 second becuase he's almost walking and into everything. He is the most curious baby I've ever seen. The sad thing is, his mother hasn't been able to go to work because of all the nights up and doctor visits. The doctors told her from the time he was diagnosed with GERD that he would not do well in daycare, and she needed to avoid it. So needless to say, she has to be on Medicaid, but thank God for it. She is trying to go to work now. She has found a mom with 2 boys who loves Jordan and wants to help her get back on her feet so she can get some decent insurance. No one will listen about the sleep problems. We would like to go to a sleep disorder doctor, but we think there are still GI problems to rule out. Someone mentioned an intestinal disorder to us that causes gas and bloating with almost all foods. We want to have him tested for that - has anyone heard of it? Sorry this is soooooo long. We have a lot of history for the last nine months. We are frustrated and sometimes feel like giving up, but Jordan smiles at us with that wonderful cherub-rosy faced grin, and the world is all right again.
Anyone else with sleep deprivation. . . still?

Trent, at 6 months old, was still not sleeping more than 2 hours at a time. We finally decided to elevate the head of the crib by putting quilts under it which helped quite a bit. After that, I just stopped going and getting him when he would wake up. The first night we decided to "let him cry it out", he cried 3 hours straight. It was very hard, but we did not go get him. We bought a baby monitor that has a tv screen, so when he would wake up, I could turn it on and look at him just to make sure he had not puked or anything. After that first week, he would only cry about 30 min. or so. Now, he doesn't cry at all. He has learned to get himself back to sleep without me. He's been sleeping all night now for about 3 months and he is 1. If he truly has something else wrong with him causing him to stay up, then I wouldn't advise it, but with Trent, he got used to me getting up with him constantly. Intially, before he started the Prevacid, he really was hurting, so I would get up with him every 2 hours or so. But, even after he got on Prevacid and other meds that were doing there job, he still wanted me to get up with him.
If none of that works, though, I would seriously consider having a sleep study on him (if her insurance will cover it), they are pretty expensive.

Amy

My son, Evan, just turned 2 years old. Because of his GERD, he still suffers from sleep deprivation (and so do we!), but it has really improved. We're now down to the occasional night, and usually not more than a few nights at a time.

As for letting him cry himself to sleep,...We have never been able to do that. It was easy to do with our first child, but if Evan is left to cry, he is soon vomitting everywhere and in severe pain from the vomitting.

I agree with the vomiting part Janette. I'm happy to hear that another child vomits it they cry. If Trent cries within the first hour after eating, he will vomit everything back up. I have never understood that. I rock him to sleep before I lay him down, and if he wakes up crying soon after, I go get him, because he will puke if I don't. But, if he wakes and cries at like 2am or after, then I just let him cry. He normally don't vomit as long as it has been a couple of hours after his bottle.
I guess that just goes along with the reflux!

Amy

Amy,

You're lucky that you can let Trent cry during the night and know that you won't have to clean him, his clothes and his bedding. Even if we let Evan go for a couple of minutes in the middle of the night, he vomits, so at this point in our lives, it's just easier for us to get him and sleep later.

I can't read postings like these without sobbing. Someone posted here recently and asked whether you feel like you're poisoning your child by simply feeding. YES!! And its so very very stressful and sad. And under-diagnosed and not understood by docs so we are on our own here. So we have to stick together. Many welcomes to you and may you find comfort here!

Yeah. I guess we are luckier than some in the sleep dept. But I have had my share of cleaning puke out of the crib and changing linens. The first few times he vomiting at night after crying, I was a dummy and didn't associate the puking with crying. After about the 5th time it finally clicked that everytime he cried, he threw up. But, I normally don't have that problem in the middle of the night. I still turn the tv monitor on him when he does wake up, just to make sure.

Amy

Hi, my baby is 5 months old, but was 9 weeks premature. Diagnosed with GERD and has been on Reglan, Zantac and now switched to Prevacid and stopped Zantac. Has anyone's baby had very irregular daytime sleep patterns (frequent wakings after maybe an hour or less) and do you think the Reglan is causing this?? I read that it causes drowsiness but also restlessness. I've stopped giving the Reglan myself as of today to see what happens. We can hardly ever give it to her 30 minutes prior to feeds anyway because she's so irregular as far as sleep goes. It's very difficult to know if she's refluxing when she wakes up grunting and often times she's not but I have to check on her...then to get her to go back to sleep is virtually impossible, but staying awake for a few hours til her next feed is also very difficult. Any advice, or comments??

Hi Meagan.

My son, Evan, is 26 months and wasn't a good sleeper until closer to his second birthday. He wasn't on meds. until he was 15 months or so, because of constant misdiagnosis. He hasn't ever been on Reglan, but rather on Losec (Prilosec if you're from the States) and Domperidone. He ended his morning nap between 6 and 8 months of age, and his afternoon nap by 18 months. We're now guessing that part of the reason (if not all) was because of his reflux. Now that he's on some glyconutrients from the States he's doing much better at eating, babbling, not gagging or throwing up and also at sleeping.

Evan always had irregular sleep patterns, and still does to some extent.

What Glyconutrients are you referring to, Janette? Can you get them w/o an rx?
Amy

No prescription necessary. I'm not sure about advertising for any companies here on the boards, so I've sent you a PM. If anyone else would like to know more, please send me a PM and I'd be happy to give you more info.

We elevated the head of my son's bed, but he has slept through the night since he was about 9 weeks. I attribute this to an eating schedule, which was easier to stick to when he was younger. Now with his eating problems, it's harder to keep him on schedule because sometimes I have to feed him all day long. I still try to get him to nap at the same times each day though. He still is a great little sleeper though at six months, knock on wood.

It sure IS hard to keep these little guys on a schedule when you're busy trying to get as many calories into them as possible throughout the day. Fortunately, it does get easier as they grow a bit older.

You're so lucky to have such a good little sleeper, Michelle. Evan outgrew his morning nap between 6 and 8 months, and his afternoon nap at 18 months--both unusually early! And he still won't usually settle for the night until 9 or 10 p.m.!

DD didn't start sleeping more then 2 or 3 hours consistantly until she almost three. Ouch!!! Now that she is almost four she is sleeping not only through the night but 12 and 13 hours. It was all of the sudden too. Can you imagine my worry the first few nights.