Posted By Posting
Mar 30, 2009
going to cry: so frustrated
I am so frustrated because my ped said that she has done everything she can right now and we just have to wait for gi appt. I'm not mad at her because she has worked with us and done a lot but I'm just frustrated that we can't do anything. My hubby says it's consuming my life. I'm so exhausted because he's been so fussy and gassy and uncomfortable. He's just been moaning and then cries. He's having trouble breastfeeding and has been going a little longer between feeds. He was put on some med called levison for his gas and he's been screaming tonight now. I don't know if it's that or the prevacid not working or if it's giving him pains. I'm so frustrated because we have no answers to his pain. He's been having loose stools forever but part of it was the rotovirus now we don't know why. We thought it could be the prilosec but now we're on prevacid and the same thing except even runnier now. I can't ask the ped for another drug because we've done a lot of changes even the pharmacist said something. I still have axid in the cupboard but have no clue now how much to give him because he stopped taking that at 2 months when we started the prilosec. At thise point I feel like just having a breakdown. I don't get any sleep day or night and I feel like my bm is sometimes killing him eventhough I've taken all dairy out of my diet. I needed to vent really bad because I think you all are the only ones that wouldn't think I'm nuts. Should I try some alimentum instead of the soy? His gas got smelly and stools runny with soy. I was just thinking that the df diet was working because his gas was better but now it's worse. What to do now besides breath and then scream? How does everyone that's on alimentum or such afford it? It's so expensive here and how long should I give it before we know if it makes him better? We've given the soy over a week and now it seems he's worse. I am desperate for some relief for him and me as well as some sleep.
Mar 30, 2009
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
I'm so sorry you're having to go through this...and your lil one too. I would give any formula switch at least 2 weeks unless you're sure there's a problem. The one he was on before can still be in his system for that long. How long do you have to wait for the GI? If it's more than a few days or a week, I would call their office and just flat out cry and beg. If they're compassionate, they may work you in. I don't know but it's worth a shot.

You probably know this but have you tried laying him on your lap and rubbing his back for the gas? That always seemed to help my lil one. She would inevitably spit up but her belly felt better.

Are his stools runny like diarrhea or mucousy kind of like snot? If it's mucousy, there's probably a problem with the formula or your milk. It is so draining trying to breastfeed these boogers. My first daughter was easy but Mags about drove me nuts. :) Every day I said it would be my last. Did you take out even the hidden dairy? There's moms here that are more versed on it than me, but there's dairy in things that you'd never dream of.

I'm sorry for spewing so much at you...I'm just trying to think of anything that might help. Hugs!

Mar 30, 2009
Andrea: Mom to 3 crazy girls!
Jackie (3/01)
Payton (9/03)
Abby (4/06) Prevacid 7.5mg (evening), MSPI, goats milk (currently trying to wean off Prevacid)
We had Abby's pedi call the GI directly and explain the situation and they got us in the next day. I would ask the pedi if they could do this. Also, if the soy made him worse, make sure that you also eliminate the soy from your diet. Some babies that really really sensitive can't even tolerate the soy oil and soy lecthin. Abby wasn't bothered by either but she had these when she was older b/c I didn't bfed her.

Check this posting that is full of good links

When you try a new formula def try and give it 2wks unless like Maggie's mom said you notice that some is def wrong. Abby was only on Alimentum for 1 day. She vomited so much on it that we ended up in the ER. She did better on Nutramigen but every baby is different. You can buy it on Ebay and it is cheaper. Yes, it is expensive but so worth it. When we had to move onto Neocate I thought we'd go bankrupt buying it lol! But we bought it on Ebay until we finally got our insurance to cover 80% of the cost.

Mar 31, 2009
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Oh boy, your post gives me flashbacks... I remember feeling so sad and desperate and frustrated and exhausted. ((HUGS)) It really will get better, and you will come to know strength in yourself you never knew you had. It's a mind blowing journey, having a child who is suffering and being so sleep deprived. I have gone through so many layers of exhaustion in the two years since I had any unbroken sleep, so may times when I thought I would die from it, and then found some energy reserve that allowed me to go on another day. My little guy hasn't suffered the pain in a long time, but he has never slept well, and so, neither have I. I remember too, sometimes feeling like my breastmilk was poisoning him, and feeling so confused between my desire to make him stop hurting and my desire to keep breastfeeding. He is almost two years old now, and still breastfeeding -- and I am so very grateful that it worked out for us.

When your heart is hurting and you are sleep deprived, everything is very immediate, and can feel like it will always be this way. Just know that most of us here have been through this, and we are all here with you...

Mar 31, 2009
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
We all know of the rough journey you are on. I feel for you I have also had a couple near breakdowns.

I would do anything you can to beg your doc to try to get to the GI earlier. Mine would not so we had to wait.

Since we had to wait I took all soy and dairy out of her diet. With the breastfeeding you have to be diligent because there is so much hidden milk that you wouldn't even think of. I ended up lasting about 6 weeks on BF and turned to Nutramigen.

The Nutramigen actually made ALL the difference in the world. My doctor called it liquid gold. It is expensive but maybe you wouldn't have to be on it for the whole year .

I would keep up with the prevacid but would definitely ask to use an H2 blocker with it.

I could also buy stock in Mylanta. It was and still is a lifesaver. It seems to soothe her better than anything.

I promise that you will be sane again and also sleep again.

Hang in there - you are doing the very best you can for your baby. Try to find a way to get some sleep. No sleep can definitely make you a little nutty :)

Mar 31, 2009
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
There IS something your doc can do - call the GE to get you in earlier or put you on a cancellation list to get in earlier! Your doc can also consult with the GE to get proper dosage of meds for you, since 6 months is a LONG TIME for GERD to start damaging your ds.

Soy can sometimes be another culprit - some of these kids are MSPI (milk soy protein intolerant). If you really feel your bm or the formula he's on is bothering him, you can try to eliminate soy as well, but it's in just about EVERYTHING. The 2 formula's I'd look at would be Alimentum or Nutramigen. Both expensive, but if they help, I would pay all the money in the world. And really, once you start a formula and it works, I'd just keep him on it, and not change ANYTHING.

Call the doc about dosing Axid - we did it at night in the bottle, since drowsiness is a side effect. Any drug can cause stool changes, so unless it's really liquid, don't worry too much about it. And really ANY changes to your little guy's diet or meds will cause runny stools for a few days anyway.

You're not nuts - we've been there. My marriage almost broke up over GERD - we've been friends for over 12 years and married for 4 at that point, and the screaming nearly tossed me in the psych ward. It REALLY sounds like your guy needs help - is there ANY OTHER GE who could get you in? And why is the peds office refusing to call the GE to beg, borrow, and plead to get you in earlier? You don't have to be angry, just desperate and crying. Just remember, most adults with GERD have OTC choices - babies do NOT, so the adults can wait a few if you have to see an adult GE at first. Good luck!

Mar 31, 2009
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
The pain cries and runny stools could certainly be a tip off to allergies. I agree that milk/soy is hidden in almost all foods, and with so many different names. Also, the baby could be allergic to something else your eating - such as eggs. Formulas such as Nutramagen can be expensive (I won't even get into the price of Neocate, etc.), but if that turns out to be what "fixes" baby, it is well worth it. Ellen
Mar 31, 2009
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Reading your post has whipped me back a few months. I am so sorry you are going through this. When Ryan was 3 months old we battled the rotovirus that when to never ending diarhea that was florescent green and full of mucus. I switched him to Similac diarhea formula for 2 days. It is soy based with fiber. It shut the diarhea down in less than a day. After that I moved him to Similac Sensative. It is milk based but lactose free. What I learned was that when young babies get rotovirus, they typicall end up lactose sensitive for a few months until their gi tracts can straighten back out and handle the lactose again. I think my husband has thought I was nutts more than once over the last 9 months, but every time I have been right. He totally trusts my instincts now and goes with it. You are not a first time mom. Trust your gut and fight like heck for your son because no one else will.
Mar 31, 2009
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
Previous posters all have great advice. My son did badly on lactose and soy. He tested negative as an allergy, but definitely has an intolerance. Watch for mucous in the poop. Nutramigen Alimentium or Elecare...all are hypoallergenic. Neocate and Elecare have NO lactose or soy (theya re corn based). We got Elecare off of eBay for AGES (still do occasionally), but then Zack qualified for state assistance...he's not delayed in any area except feeding...he gets feeding therapy and his formula covered (with a docs note). Check the Early Intervention for your state and's SO worth a try! Our insurance iddn't cover formula. And we go through a TON of it becuase Zack pukes 3-7 times per day, so we refeed a LOT! Most importantly...get some rest...this is hard and it sucks...there's no niceer way to say it. The chances are really good that your bagby will outgrow it (mine didn't, but that's pretty rare...he's 18 months)
Mar 31, 2009
Mom to Charlie - cleft palate and reflux. Meds - zantac, prevacid, mylanta and reglan.
Re Alimentum and cost - a couple of ideas: 1) definitely check out websites. I buy Charlie's at babywuv. I need to buy 18 in one order, but the shipping is free and it costs $21.60 a can vs. $27+ in drugstores or supermarket. 2) Maybe your insurance will cover it if your GI (when you get there) agrees it is medically necessary. 3) If you have a healthcare reimbursement account, you may be able to make a claim for the formula which means you are at least saving on a post-tax basis. For that you may need the doctor to fill out a form of medical necessity. Good luck. Susie
Mar 31, 2009
Hi Mommy2k. The best advice these ladies gave to me was to give meds and formula switches time to take full effect. If I listened to my pediatrician, we would never know if anything was working as he was of the opinion that changes would become apparent within 48 hours! I know it's so hard when you are exhausted and watching your child in pain to hold out and wait but it really does make all the difference. My son, like your baby, had awful mucousy diarrehea. His were explosive and he was going around 12 times a day. The pediatrician thought it was rotovirus, but 5 weeks on things were getting worse. We then switched from prevacid solutabs which had just started working to control his pain to prilosec as the pediatrician thought it could be the prevacid causing it. However, the diarrehea still continued and unfortunately his pain spiralled out of control yet again. We then changed his formula from Pregestimil to Neocate and bingo, his stools started becoming less frequent and less runny. According to the pediatrician the Neocate should have made a difference within 48 hours. It didn't, but we decided to continue thanks to the advice on the forum and 7 days later his stools started firming up. He's now got smelly wind, but it doesn't appear to cause him any bother. We then changed his thickener from Thick & Easy to Carobel and his diarrehra has cleared up. He's now been on prilosec for 3 weeks and we are again noticing his pain reducing. He's also on zantac. We still have bad days, but things seem to be getting a bit better. As the others have said, you need to beg for a referral to a GI asap. You will hopefully get the help you need from them and the right combination of meds and formula to help your baby control his pain. Good luck.
Mar 31, 2009
more sane today
Boy thanks everyone for helping me get through that rough rough patch. It's still rough going but we decided to stop supplementing with the soy formula. It's so good to be able to get all this wonderful advice and helpful information. The ped office told us they would call the gi to try to get us in earlier but nothing. I forgot that I could try to get on a cancellation list. We are managing the pain with maalox right now and with the levison drops the doc gave us for gas. I had a friend come over today and I got to take a nap and she took over for me. She also helped me clean the house. It felt so good to be able to have a break and get some things done. He's still having explosive runny stools which sometimes smell like they did with the rotovirus so I'm hoping he doesn't have it again. I didn't know about the lactose sensitivity thing when they have rotovirus. It seems like everything went downhill when he got rotovirus so maybe it's taking him a long time to get through that. He's been actually sleeping for almost 3 hours now which is really good. He had a little bit better of a night last night too. He was fussy after every feed again but we gave him some maalox and he settled down. We're going to see how he does without the soy formula for awhile and see if that helps. My df diet was helping him on gas until I think the soy came into play. That's the only thing I can thinnk of. I need to start a whole diary thing but being so stressed and sleep deprived I don't think about it. Sorry so long. Thanks ladies for helping me feel better. I'll let you know what happens def.
Check with your
doctor first!