reflux among other problems

[frazzled]

I am SO happy I found this site....I have a 7 week old that basically had problems since day one. When he was born he was making grunting sounds so he was kept in the NICU for an extra day until it cleared. When we took him home all the problems began and my husband and I are at our wits end. He tends to cry throughout most of the day and it's not a fussy cry it is an "I'm in pain cry". I tried breastfeeding but he was so upset at feeding time that we couldn't get him calmed down enough to latch on so I pumped for about 6 weeks and supplemented with formula. When I explained to my doctor about what he was doing the doc immediately blamed it off on colic and said there was nothing he could do - just let him grow out of it. I just couldn't handle that explanation and couldn't handle watching my son in pain. They changed his formula to Nutrimigean. They also informed us that the poor guy has a hernia in his belly-button and his testicles. Finally after researching - my son fit all the signs of reflux and I brought it up with the doc...sure enough after an Upper GI test - he was positive for reflux. They started him on reglan 3 times a day. The little guy was also wheezing and coughing non-stop and I am SOOO mad - I told my doctor this from the first week he came home and finally at week 6 Gabriel was wheezing in the doctors office so they finally heard just how bad it was. They started him on a ventilator 3 times a day to help with the wheeze.
The Barium from the GI test really messed his little stomach up and for several days he did not have a BM. I kept calling the doc and he said that it would pass. Finally after 4 days of my little guy screaming bloody murder in pain I demanded they see him. They gave him a suppository and that emptied him out. This was last week....since then he has not had a normal BM on his own without us stimulating him with a Q-tip (not a nice experience). We called yet again and they changed his formula for a 2 time to Alimentium and said to stop stimulating him. The first day we started the formula within 3 hours, he had a massive blowout in his diaper and ever since then he has gone back to not having any more BM's. THe doc said to give it 3-4 days on the formula. How in the world is the little thing supposed to deal with screaming pain and bearing down for 3 more days????
We are SO frustrated in watching Gabriel scream and writhe in pain - he wants to eat constantly (probably soothes his throat and tummy) and the doctor insists that we are feeding him too much (he eats 3-4 ounces every 2 1/2 -3 hours and he is 7 weeks old). He throws up 10-14 times a day and so violently it comes out his nose. He grunts and strains ALL night and hardly sleeps more than an hour. He will only sleep on mine or my husbands chest on his tummy (we have tried the car seat and elevating his head in the bassinette but he sleeps for about 15 minutes and then starts screaming). We have no idea what to do...the doc seems to keep blowing it off. I think his wheezing and constant nose stuffiness is because of the constant throw up...how in the world is a ventilator going to help that? The Reglad does not seem to help at all.
Has anyone gone through anything like this and if so we would love some input! I feel so rotten that for 7 weeks our son knows nothing other than throwing up and pain and we are all missing out on this magical moment.

[Blessed]

We were there not too long ago. It's terrible. But you will get through this.

Reglan alone isn't going to help. I knew a mom on another board who was in a really similar situation. Y'all must have the same doctor. :D See if you can get him to prescribe Zantac. And if he keeps blowing you off, <b>find another doctor.</b> Or better yet, see a pediatric GI. Several women on this board will tell you that nothing changed until they got a new doctor. (I'm one of them!)

Also, have you tried thickening his formula with rice cereal? It's a pain trying to get the thickness and nipple right, but it can help a lot. That was the first thing we tried, and it really did make a big difference. And until you can get him on Zantac, you might want to try an OTC antacid like Mylanta. (Mylanta Supreme is cherry flavored. Your pharmacist can tell you how much and how often you can give it to him.) If he's fighting the bottle at feedings, you can give it to him about 15 minutes before he's due for a bottle. Otherwise you can just wait until after he finishes to see if he's going to need it or not. (With Thomas, some feedings were better than others and he didn't need it at every bottle.)

About the poop issue -- Thomas went through a phase like that too. One of his more helpful doctors explained to us that babies actually have to <i>learn</i> how to poop! There's a series of muscles they have to learn to work in the right sequence, and they're often doing the exact opposite of what they need to do. What helped us was Karo syrup. We put 1 tsp. of <b>dark</b> Karo syrup in his bottle twice a day until he got "regular". Then once he was going pretty regularly, without too much trouble, we gradually tapered off. We only had to resort to it once or twice after that, and since then he's never had any more trouble. Give it a try -- it worked like a charm for us.

[L&M's Mom]

My first advice would be for you to get into a Pedi GI if you have not already done so.

I had the same problems with my baby. It took me forever to find the right formula. I went from regular formula to Nutramigen and stayed on that for over a month. My baby was uncomfortable with every feeding, would stretch, squirm and arch her back throughout feedings, scream everytime we tried to burp her and then remain horribly uncomfortable after we fed her. The Dr. put her on Zantac and Bethanachol for reflux but that still didn't take care of the stomach pain. I finally requested that she be placed on Neocate, a prescription formula, which took care of her stomach pain. However, because of the exorbitant cost, my husband talked me into trying soy - it was a miracle. It has totally resolved the stomach pain.

However, my baby continues to suffer from reflux. Some babys are totally treated with Zantac. Some require stronger meds like Prilosec or Prevasid. I'm trying to get my baby on that now. Thickening the formula will also help. About a half to a full teaspoon per ounce should help. However, that will increase your baby's constipation. My baby also has a swallowing dysfunction where she almost aspirates when she eats - another reason we have to thicken her formula.

If your baby is that uncomfortable, don't just assume it is colic like the pedi said. My baby actually finally slept propped up on a pillow for four hours in the afternoon on Sunday - she is three months old. Though I was thrilled that she slept that long during the day (she usually sleeps for 15-20 minutes) I was also sad that she is three months old and this is the first time she has been comfortable enough to rest that well.

She sleeps at night in her swing. I got one of the swings that swings bassinet style. The side to side motion seems to be better thant the front to back and doesn't cause her to reflux.

My baby also has the stuffiness and I know of no fix for that. The Pedi GI said it was from the reflux. It is pretty concerning at night - I'm afraid she will stop up and stop breathing!!! When it is really bad, I sleep sitting up with her on me. However, since I bought the magical swing, she actually sleeps 4-5 hours straight at night. She only sleeps about 30 mins to an hour during the day though so she is very worn out by night.

Good luck - try hard to get in to see a Pedi GI. That is probably your best hope because many Pediatricians are hesitant to prescribe the reflux meds.

L&M's Mom

[Crystal B]

Please don't take your doctors word for it. i just switched doctors and from one doctor saying nothing is wrong and theirs nothing for his skin (exzama) to my new doctor saying he has reflux and here is zantac and three prescriptions for his skin.it is a big change. i feel so bad that it took this long now we just got to work out the amount of zantac and he is at the lowest amount they give and we will go from their. my son has the stomach pains come to find out i am feeding him to much and he is 51/2 months and was eating 5 ounces every 2 hours. and he is suppost to be eating 3 to 4 ounces every 3 to 4 ounces. we got him at 4 ounces every 3 hours . and we do not have as many episodes with the stomach well it has only been two days but i can tell a big difference . although he acts hungry at 2 1/2 hours we try to push it and the doctor said that unless he is bloated and over full he feels he is not hungry and that that would last about a week.you might ask the doctor how much he is suppost to eat.
crystal B

[needsleep]

HI
BOY, DOES YOUR POST BRING BACK MEMORIES OF MY 2ND CHILD 3.5YRS AGO...MATT WAS AN ANGEL TILL DAY8.THEN HE CRIED AND CRIED AND CRIED, THEN HE SPIT UP ALL THE TIME..AT LEAST 10X EVERY FEEDING, AND THE GRUNTS THAT CAME FROM THAT LITTLE BOY..I CRIED ..HE CRIED..WELL, I TOOK HIM RIGHT TO MY PED WHO IN TURN SENT HIM TO A PEDIATRIC GI..HE HAD REFLUX AND WE TRIED ZANTAC AND A MEDICINE THAT IS NOW OFF THE MARKET CALLED PROPULSID...BUT IT DID NOT STOP THE REFLUX..OR THE CRYING..I WAS GOING CRAZY...I FINALLY BEGGED MY DR TO LET ME GIVE HIM BENADRYL..TO MAKE HIM SLEEP SO I COULD HAVE SOME SANITY IN MY LIFE..THAT TOOK A BIT OF THE PRESSURE OFF ME..AS FOR ALL THE MEDS, I CAN SAY THAT THEY MAY HAVE EASED THE SYMPTOMS OF COLIC AND REFLUX BUT THE ONLY CURE I FOUND WAS TIME..AT THE MAGIC AGE OF ABOUT 4MONTHS..HE JUST QUIETED DOWN AND BECAME A HAPPY LITTLE BOY WHO THREW UP ON ANYONE..BUT I DID NOT MIND THAT..THE MAIN THING WAS THE CRYING STOPPED..HE DID NOT STOP SPITTING TILL ABOUT 18MONTHS...AND STILL AT ALMOST 4, HAS SOME BOUTS OF REFLUX..BUT MY POINT IS,,,,YOU WILL SURVIVE AND YOU WILL GET THRU THIS HORRIBLE EXPERIENCE.I HATE TO PUT IT THAT WAY..BUT I HATED BEING A MOM...I WANTED TO BE HAPPY AND HAVE A HAPPY BABY..THIS IS NOT SUPPOSE TO BE THIS WAY AND IT WAS...SO HANG IN THERE..AND THIS BOARD IS A LIFE SAVER...TALK TO US ANYTIME YOU WANT...WE WILL ALWAYS LEND AN EAR AND SOMETIMES EVEN SOME GOOD LAUGHS AND ADVICE...TAKE CARE AND ALL THE BEST TO YOU'''

MARLANA
MOM TO 3 COLIC BABIES...
CASSIE 8YRS
MATT 3.5YEARS
LIZZIE 1YR

[needsleep]

ME AGAIN

I FORGOT MY MAIN POINT ON THE REFLUX/...

MY 3RD CHILD ELIZABETH[LIZZIE BEE]..SHE HAD SILENT REFLUX..THE TYPE WHERE SHE DID NOT SPIT ALOT BUT IT BURNED THE ESOPHAGUS..SHE ALSO HAD COLIC TILL 6MONTHS..BUT PRILOSEC HELPED THE REFLUX..IT KEPT THE REFLUX UNDER CONTROL AND HER OUT OF PAIN..SO THAT MAY BE SOMETHING YOU WANT TO TALK TO THE DR,. ABOUT..

MARLANA

[Loriella]

Marlane,

I just read that you had THREE colic/reflux babies! You deserve a badge of honor. I have a 6 month old who is just starting to get better from colic/reflux, but I tell ya those first 5 months were absolutely AWFUL and I am sooooooo scared of having to go through that again. She is my first baby. I cannot imagine having to look after a colic/reflux baby when I have other children because the colic/reflux takes all your time.

Tell me, was it easier the second time around?????? How did your other children handle it?

We would like to have another child in a year or so and I just want to prepare myself for what it might be like if I have to go through this again.

[needsleep]

LORIELLA,
FIRST OF ALL, LET ME CORRECT MYSELF...MY 1ST CHILD WAS A PREEMIE AT 1LB 3OZ.WITH VERY LITTLE HOPE OF SURVIVAL. SHE IS NOW 8[GOING ON 16]..AND FINE..NOT ONE THING WRONG W/HER..BUT SHE HAD COLIC..AND TO MAKE IT WORSE, SHE WAS ON AN APNEA MONITOR FOR THE 1ST 6MONTHS WHEN I BROUGHT HER HOME SO WHEN SHE WOULD SCREAM AND SCREAM, THE MONITOR WOULD GO OFF..NOT TO MENTION THE OXYGEN SHE WAS ON FOR QUITE SOME TIME...SO AFTER HER..I SAID NO WAY..BUT SHE BECAME MORE OF A JOY THE OLDER SHE GOT..ALSO, SHE DID NOT HAVE THE COLIC AS SEVERE AS MY NEXT 2..BUT AFTER ABOUT 4YEARS, I WANTED ANOTHER BABY..AND THEN I HAD MY SON MATT...WELL, HE WAS ONLY 1 WEEK OLD AND ALL HELL BROKE LOOSE WITH HIM..HE SCREAMED, BARFED, GRUNTED 24/7..TO THE POINT I WENT TO MY PED. AND TOOK HIM IN THERE..WITH ME LOOKING LIKE A NUT. AND SAID.I CANT HANDLE HIM..DO SOMETHING....AFTER SEEING THAT I WAS EITHER GOING TO LEAVE HIM THERE OR LOSE MY MIND, THEY GAVE ME SOME BENADRYL TO SEE IF HE WOULD SLEEP..SO I GAVE IT TO HIM AND IT KNOCKED HIM OUT FOR ABOUT 1-2 HRS AT A TIME WHICH WAS BETTER THAN THE 10MINS AT A TIME HE WAS SLEEPING..HE WAS PROBABLY ABOUT 2-3MONTHS AT THAT TIME..SO I DID THAT WITH HIM A FEW TIMES A DAY...TO KEEP MY SANITY..THEN AT 4MONTHS OLD, HE JUST TURNED IT OFF..HE WAS SOOOO GOOD AFTER THAT..ONLY CRIED FOR THE USUALY BABY NEEDS..BUT, HE HAD REFLUX REAL BAD...SO NOT MANY PEOPLE OFFERED TO HOLD HIM OR WATCH HIM..SO IT WAS ME AND HIM..AND MY HUBBY AND HIS LITTLE SIS WHO REALLY DID NOT LIKE HIM MUCH AT THIS POINT..BUT...I GOT SOOO USED TO THE BARFY SMELL ON ME AND HIM..AND I GOT USED TO MY HOUSE BEING IN AN UPROAR..THAT IT DID NOT PHASE ME ANYMORE..AND I HAVE TO SAY THE GOOD THING ABOUT A REFLUX BABY........I GOT NEW CARPET.......YEAH...SO THEN I SAID THAT IS IT..NO MORE KIDS..2 IS ENOUGH AND LIFE WAS WONDERFUL...GUESS WHAT...ABOUT 1YR LATER...I WAS NOT FEELING TOO GOOD..AND THEN I REALIZED..NO, IT CANT BE...BUT 9MONHTS LATER..I HAD MY LIZZIE BEE..AND I SAID TO MYSELF..GOD WOULD NEVER GIVE ME ANOTHER COLIC BABY..WRONG.........SHE DID NOT GET IT TILL ABOUT 6WEEKS ..JUST WHEN YOU THINK YOU ARE IN THE CLEAR..BUT SHE ALSO GOT REFLUX..SO HERE WE GO AGAIN..I WAS A BASKET CASE WITH 3 OF THEM..I HAD SEVERE POST-PARTUM AND REALLY THOUGHT I WOULD NEVER SURVIVE..SHE SETTLED AT AROUND 6MONTHS..SLOWLY..NOT LIKE MATT..WHO JUST ONE DAY SHUT UP...SO, NO, I DO NOT DESERVE AN HONOR BADGE..A VACATION.........YES...THEY ARE MY BABIES..AND I LOVE THEM MORE THAN LIFE ITSELF..AND YES, I WOULD DO IT AGAIN IF I HAD TO..BUT 3 IS ENOUGH FOR ME AND WITH 3 C-SECTIONS, I CANNOT HAVE ANY MORE KIDS SO I GOT FIXED...BUT YOU TOO WILL HAVE THE STRENGHT FOR ANOTHER ONE TO LOVE...I HOPE I HELPED A BIT....HANG IN THERE...

[mom2]

Hey there,
What I find so maddening is that Sophie can have three or four marvelous days in a row where she naps, plays, laughs etc and then we are back to no sleep and crying all day!!!! Yesterday was awesome and I truly felt happy for the first time in a long time. My son was able to play with her and I could give him some time and then puff, today has been a nightmare. She cried and fussed and needed to be held all morning. Thankfully, she wore herself out and is sleeping. I feel awful to be happy that she is alseep and hope that she stays that way for a few hours.
It is her five month b-day today. Had anyone told me I would last this long I would have laughed. Now, I usually just want to cry. Good luck to everyone else going through this!

[needsleep]

MOM 2..

YOU CRACK ME UP...I STILL CANT WAIT FOR NAP TIME...OR BEDTIME AND I WORK SO I REALLY ONLY GET A FEW HRS WITH THEM ANYHOW...IF SHE IS HAVING ON/OFF DAYS..THEN I WOULD SAY YOU ARE WELL ON THE WAY TO RECOVERY...USUALLY IT WILL TAPER OFF..SO KEEP HANGING IN THERE..YOU ARE ALMOST DONE..IF YOU MADE IT THIS FAR THEN YOU CAN GO THE DISTANCE.DONT FEEL GUILTY FOR NAPS OR WHATEVER..THERE IS PLENTY OF TIME FOR PLAYING AND THINGS WHEN SHE GETS A BIT OLDER..IN THE MEAN TIME..SLEEP IS VERY GOOD FOR BABIES..AND MY DAUGHTER WHO IS 18MONTHS NOW..STILL REQUIRES ALOT OF HOLDING AND CUDDLING AND STILL HAS VERY FUSSY DAYS WHERE SHE CRIES AT ANYTHING..IT MUST BE A WOMAN THING STARTING EARLY..KEEP YOUR CHIN UP..YOU ARE ALMOST AT THE FINISH LINE..

MARLANA
MOM TO---
CASSIE 8YRS
MATTHEW 3YRS[ALMOST 4]
ELIZABETH[LIZZIE BEE] 18MONTS[I THINK]

[mom2]

Thanks so much for the kind words and encouragement. I hope you are right in that we are almost to the end of this. It has been a long and rocky road. Some say it makes you stronger, I would settle for being weak!!! Thank goodness I have found all of the wonderful other moms and dads at this site. I truly don't think I could have done it without being able to sound off and not be judged.