Posted By Posting
Oct 19, 2010
jacksonsmom
Need Help!! New to Site! 9 week old with severe reflux
Help!! My son is 9 weeks old and is on his 5th formula... He started out on Similac Advanced in the hospital, then to Similac Isomil, then to Similac Sensitive, Enfamil Gentleease, now he is on Similac Alimentum. The alimentum has made a difference he is not screaming as much. He was tried on Zantac at 5 weeks and there was NO difference if anything it made it worse and he screamed when he took it. He is constantly grunting and making noise and he can't sleep well at all. He started projectile vomiting daily about 2 weeks ago, I called the ped and he said its just baby he will be ok... he also told me after feeding him to lay him down and let him fussy and cry till he puts himself back to sleep... well I can't do that when I know he is in pain and that he needs to be kept upright for awhile so he doesnt reflux. Needless to say I switched peds I went to a new one and he told me that its trial and error and that we would try to get him comfortable. He put him on prevacid 15mg solutab once a day 2 weeks ago and maalox as needed. He seemed to be doing a little better the vomiting stopped, well the past 3 nights he has been vomiting again and very very restless. I wake up to him in the night acting like he is almost choking on reflux. Just yesterday he ate at 2:30 and was ready to eat again at around 5:45 and while I was getting his bottle ready he projectile vomited his bottle from 2:30. I do think the prevacid is working as he is not screaming when he does reflux but I just wish he was able to keep it down. After the projectile vomiting I later that evening gave him his prevacid. The next morning he spit up and there was prevacid. That was a little scary bc the particles almost look like old blood. I called the ped and we went back in and he uped his dose of prevavid to 15mg twice a day now. (expensive even with insurance but if it works its worth it.) I am suppose to try it for the week and call him back on Friday, if not any better then we are switching to elecare. I wanted him to be better before I went back to work next Monday but that doesnt look like its going to happen. We had an upper GI done at everything was good except severe reflux. He is sleeping on a wedge but its only like a 20 degree incline and I think it needs to be more. I do put him to bed on his left side so his stomach will empty. The most he will sleep for a nap during the day is about 30 mins... he just cant relax, then at night he is exhausted and he will actually sleep for about 5 hours and then for 3 then he is up for the day... Does anyone have any suggestions?? I just started him on probiotics per the ped and I hope they start working. I was also told to give him flat ginger ale mixed with water and it does help his stomach relax. I am willing to try anything. He is also having his bottles thickened with rice cereal and I am using the Beechnut bc it doesnt have cow protein in it. Someone please tell me I am not crazy and that this will get better!!
Oct 19, 2010
mrsdtek
I am new to all of this but the original wedge I had wasn't at enough of an angle. I ordered the tucker sling and their wedge...it seems to help my little girl with the frequency of choking on her reflux but it still happens :-( Also you can have your baby tested for allergies. Her doctor said she was too young and that I had to do trial and error but I found a pediatric allergist that said she wasn't too young and tested her. Unfortunately I forgot the common allergies for GERD infants and didn't have her tested for corn (which is on all OTC formula accept alimentum ready to feed from what I have read so far) :-( Hope that helps but a lot of the parents on here have great info and I am sure they can help you better!
Oct 19, 2010
vigilantmom
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
A quick response for now, but I will be back later tonight... Yes... unfortunately this is trial and error but hopefully the moms on the board can help you get to the finish line faster based on our expririences.

If your son has to be on Alimentum, the prevacid solutabs are probably not the right choice for him as they have trace amounts of milk in them. While the prevacid is helping him, the trace amounts of milk could be causing the issues. Ask your doc to change the script to a compounded prevacid liquid for right now, and then go to refluxsolutions.com to order your own compound mix so you can mix it with zegrid OTC or Prevacid OTC yourself so you can have a smaller fresher batches than you can get from the pharmacy. Plus making your own liquid with the OTC prevacid is much much cheaper than the solutabs. (for more info go to marci-kids.com and refluxsolutions.com) The liquid compound from the pharmacy will get you by till your supply arrives. Try this before making another formula change. You might still have to change formula but start with the meds. It just might work.

You are doing the right thing by not laying him down and getting a new doc. Good job mom!

Likely the particles that you are seeing is the prevacid. Ryan did that too on the Prevacid solutabs. Scared the heck out of me. I actually took a blanket of it to the doc and he told me what it was.

Look into an alternative sleeping arrangement for a few months. Something along the lines of the Fisher Price Soothing Motions Glider. The angle is much better but does not crunch his stomach like a car seat will.

Never heard of the ginger ale thing. I used the Happi Tummi waistband. That worked really well to relax his stomach.

Hang in there momma and keep asking questions!

Oct 19, 2010
blueleopard
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.
Didn't read the other replies, so forgive if I repeat. I had a nightmare with my son in the beginning. We tried the formulas & Zantac too. Of course, for every child there is a different reason behind the vomiting, etc. In OUR case, it was reflux, but it was the milk/soy protein allergy that really caused most of the distress. I wish someone had told me before close to 17 mths. of hell & countless doctors/specialists to at least try the Elecare or Neocate. This was the MAIN thing that turned my son around. Good luck, I hope you get relief for him (& you) real soon. El
Oct 19, 2010
jacksonsmom
Thank you for the responses... I am looking into the compound instead of the solutabs... They tried to tell me that there wasnt enough milk protein to cause an issue... I am also in the process of buying a tucker sling, but I like the idea behind the glider too. I too took his sleeper with me to the doctor for them to make sure it wasnt blood. I have also wondered about testing for allergies but I hate to put him through that. He is only eating 3.5 oz every 3 hours... but he is starting to act like at times that its not enough but I hate to over feed and him to spit it all back up... Ugh this reflux is AWFUL!! Is it hard to mix the compound and whats the difference in caracream and baby buffers??
Oct 19, 2010
vigilantmom
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
Making your own liquid compound is super easy. You open the Prevacid or Zegrid capsules (I cute them open with a manicure scissors) pour the granules into the bottle they give you, add water, and the caracream and shake it up. Thats it. You store it in the fridge. Each batch lasts a little over 2 weeks, depending on the dose, but is stable for 30 days. It is great stuff. You can administer it at anytime, no more timing around food/empty stomach. I was able to take Ryan down from 30 mg a day to 15 mg once I started giving it to him this way because the meds were actually getting in his stomach. Buffer Babies, Caracream, Caracream Z are all basically the same. The difference is if you are mixing it with Prevacid, Zegrid and the type of bottle it is in. All works the same though. Go to refluxsolutions.com or call David at MARCI-Kids. I used the regular Caracream for a year mixed with Prevacid and moved to Caracream Z a couple of months ago because it was even cheaper than Caracream. Works just as great. It gets mixed with Zegrid instead of Prevacid.

The pukes will get so much better with time. It is most important to remove the acid from the pukes so he does not damage his throat. You are doing the right thing by feeding small amounts at a time. If he is acting hungry and wanting to eat, try going every 2.5 hours

Please dont feel bad about the daycare. If you found a good one, let them help you. As long as you can get his meds and pain straightened out, you are good to go. They can handle the frequent feeds and the pukes. They are use to it. My daycare was a godsend. Ryan silent refluxer... no pukes.. but developed severe feeding issues because I couldnt get his meds figured out fast enough for him to make the association between food and pain. They worked so hard with him and shared the load with me. To be honest, I needed the break.

Oct 20, 2010
blueleopard
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.
Don't get caught up in testing for allergies. The saying is that reactions trump results, anyway. So, if you tried Elecare for a week or so & saw significant improvement, that is enough to justify the switch. Just keep it in mind, if all the other measures aren't helping enough. El
Oct 20, 2010
beth anderson
PAGER Director and original GERD Nerd
Mother of Chris (1988) and Katie (1990)
Author of The Reflux Book
Member of PAGER since 1992
Donor since 1992
Jackson's mom
Yes, allergy testing isn't particularly accurate at this age. You get lots of false positives (causing you to avoid foods that don't really cause a reaction) and false negatives (causing you to use foods that are a problem). Testing is often conducted after all the DIY detective work seems to have missed something important. Your detective work seems to be pretty enlightening. Maybe you won't need any test after you are done with your mom detective work.

We are about to publish a study of bottle thickening and nipple selection for thick formula. That might be helpful for some of you.
Oct 20, 2010
meredithy
Beth
What type of study are you doing for the thickened liquid and nipple selection? I just was told to thicken my sons Neocate and use 1/2 Tbs for every ounce. I had to use a knife to make the opening bigger. Then it was too big and he finished his 4 oz bottle in less than 5 minutes!! Great bring on the puke!! Help?!
Oct 20, 2010
meredithy
Jacksonsmom! Reading your story is like reliving the last 14 weeks of my life!! UGH! My son started on Zantac moved to Axid back to Zantac. Added Prevacid and after two choking episodes and hospital vistis he has been on Reglan for about 1 1/2 months! Now he showed signs of allergies with my breast milk even though I was on the elimination diet (no dairy, wheat, eggs, nuts, soy). Had to try Nutramigen but that is a no go and we are on Neocate now! Now we are told to thicken the feeds and up his meds! I still cant get ahold of David at MACRI-kids but I call everyday. My son is on the solutabs but it cost me $95 every two weeks! I am going to have to try the OTC with the bufferbabies soon!! Hang in there! I have realized all those days that I cry on my couch that the next day is better. we have good days and NOT SO good days! You are doing everything you can for your son! Good luck going back to work. Let us know how that sling works. I have to say this is the most difficult thing I have ever been through and I am so glad that my daughter and husband are so loving and helpful!! Keep at it and hang in there! I love this site, the women have helped me sooo much!
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