Posted By Posting
Apr 15, 2009
angela39
I am crazy!
Can someone please help. At 3 weeks old I knew something was wrong with my baby. My pediatrician dismissed me and said colic. I suggested reflux and he reluctantly gave me a rx for Zantac. It didnt help at all. Went to new ped and they put her on prevacid solutab. Her symptoms continued and she isnt sleeping more than 3 hours at night. Not napping well either. That ped told me to give her benadryl. So I called a specialist. We had one appt with him and this is what we were told.She is on nutramigen and we were told to thicken feedings with rice cereal because she is gagging, choking etc on the formula. So we have been doing that and feedings have been a little better. Before every feeding was a nightmare. Back arching, screaming, stiffening legs etc. Now about 50% are like that. We had upper GI that of course showed no reflux. They changed her meds to compounded prevacid 1x per day. She is now only sleeping 2 hrs at night and screaming more. Called nurse and was very upset because baby isnt doing well. They actually dismissed me and said its my stress and lack of schedules etc... I dont know where to turn. Do I find new dr?? I am in Colorado. ANyone have advice???? TIA Ang
Apr 15, 2009
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
You are not crazy! We have all been there and I am blown away by the horrible doctor stories. A few things stand out for me in your story and that is the rice cereal and the compounded Prevacid. I would try going back to the solutabs if you can because the compounded Prevacid is really unstable and doesn't seem to work as well for people here. Also I would try twice a day of Prevacid instead of once a day because it is processed in children incredibly fast which may be why your child isn't sleeping well at night. Also, I would stop giving the rice cereal in the bottles as a lot of refluxers can't tolerate rice. If she starts gagging and choking without the rice then you can try other things to thicken the consistency like Simply Thick. Are you keeping her elevated while she is sleeping? My son literally slept in his swing for the first four months so do whatever gets you some rest. Hang in there and keep searching for a better doctor. I have heard Jewish National in Denver is awesome.
Apr 15, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
New doctor pronto!! As in RIGHT NOW! You are not the crazy one and an upper GI doesn't show reflux unless your baby is refluxing at that moment.

Compounded prevacid can be unstable and ineffective after just ten days to two weeks - if it was even made right in the first place. How long were you on the solutabs? It can take anywhere from one to six weeks to see any improvement. Did they tell you to give the prevacid on an empty stomach? It's very important to give the prevacid at least thirty minutes before feeding and at least two hours after feeding. Check out a site called MARCI-Kids, they have some interesting information on PPI doses for children.

Formula changes can also take a bit to kick in. If you've been on the formula for a couple of weeks you should know if it's working for your LO or not. Rice cereal can be very hard on little bellies - the GI tract isn't mature yet and rice can make symptoms worse. Have you looked into another thickener like Simply Thick or Thick it?

The arching sounds like it could be something called Sandifer's. If you have access to a video camera I would suggest video taping these episodes (along with a couple of feeding sessions) to show to your next doctor. I know it shouldn't be, but it does seem to help get doctors to take you seriously when you show up with video.

Again, you're not nuts, you don't need a schedule, you need someone to help you get your baby out of pain. At the very least as a small help for your LO call your ped and ask what dose of maalox or mylanta you can give. Maybe that can help you guys make it to your next appointment with a competent specialist. Also, (I'm sure you know but I'd be remiss if I didn't say), try to keep your LO upright for thirty minutes to an hour after feeds, prop up the crib to a 45 degree angle or if that's not possible use a pillow or two UNDER the head of the mattress to get a good 30-45 degree angle. To keep your baby from tumbling down the angle take a large towel and roll it tightly length-wise and make a U shape. Put your baby's butt against the lower part of the U and that should hold him there reasonably well. We also angle our changing pad because she refluxes on air :)

Good Luck! I think we've all been there. I know I had to diagnose my baby and I'm not the only one. Fight hard Mamma, you can make it!

Apr 15, 2009
lorenzomama
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.
Repeat after me...."I am NOT crazy, I am NOT crazy".... And I assure you, you are not crazy. I don't understand why it is acceptable for physicians, or any other health care provider, to minimize the suffering of a child and the resulting suffering of the family. We went through the same sort of thing, and have spent almost two years trying to understand what is happening for our son. For over a year we were treated like over-reacting first time parents, no matter what evidence we presented that there was a problem.

It is so frustrating, because there ARE other things, in addition to and in conjunction with, reflux that can cause what you are describing, and it SHOULD be the job of your child's physician to find out what is going on. So my first piece of advice is, if your pediatrician is not listening to you, get another pediatrician. You are the customer, they are the service provider. You shouldn't have to put up with someone who is simply not providing the agreed upon service. Secondly, if you don't already, keep a journal of everything you can think of about what happens to your little one during the course of a day/night. It will help you identify patterns, keep track of what happened when, and give you a good resource when you go to a doctor who actually listens.

You will find a tremendous amount of support here. Be sure to check out the reading room for good information and articles, as well.

I wore my son on my body pretty much all the time, including at night, for the first 7 months. For some little ones, being worn upright against mama or papa helps a lot. That said, my son still (at almost 2 years old) has never slept for more than 3 hours in a row, and sleep is typically really awful for reflux babies and their mamas. Hang in there, and know that you are absolutely not alone, and you are absolutely not crazy. You know your baby better than anyone else, trust your instincts and insist on professionalism from those meant to provide care to you child.

Apr 15, 2009
slimfast13
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!
I'm am going to echo the mantra...."YOU ARE NOT CRAZY!!!" I agree with going back to the tabs - the compound, even when mixed correctly, is only useful for 2 weeks, and that is ONLY if it's compounded correctly. It'll take at least 2 weeks to get any relief most times, and it took us 8 weeks to see good results.

Rice is pretty much a no-no with many of these kids - go figure. Many use ThickIt or Simply Thick. We used oatmeal cereal to thicken it.

NEW MD!!!! PED GE!!!!! The upper GI barium swallow is not supposed to be a diagnostic for relfux - it's just supposed to rule out anatomical abnormalities. It's helpful, but a pH probe or endoscopy is the test to diagnose or rule out.

I just started to read the other posts and I realized I'm just repeating. sooooooo...

NO, YOU ARE NOT CRAZY.......YOU ARE NOT CRAZY We've all been there. HUGS!

Apr 15, 2009
babbatt
You are not crazy. I am relatively new to this site, but not so new to reflux as my daughter was diagnosed at 3 weeks and we've been dealing with it ever since. She is now 10 months old. Where in Colorado are you? I'm in Denver and have seen a number of docs in our quest to find a good care team for my daughter.
Apr 16, 2009
maiam
maia m - GERD. Nissen Fundoplication w/hiatal hernia repair.
Mom to
Son (10) GERD(aspiration pneumonias, apnea, tracheomalacia), Food allergy, Asthma
Daughter (6) GERD, Heart Murmur, Food Allergy, Asthma, Mold allergy
another vote for national jewish - especially if food allergies might be a factor in the feeding difficulties.
Apr 16, 2009
angela39
You are all awesome!
I have video and no one wants to look at it. I have a log and they dont want to hear it either. I am so confused. Why would a GI at childrens tell me to put Rice Cereal in her bottle? Isnt Childrens suppose to be best place for kids?? And heres what is so bad. The specialist called the ped that we dont go to anymore and havent seen for over 3 months after we specifically said we werent going there anymore? What the heck? There idea of a schedule is feed 3 oz every 3 hours even throughout the night. If for some reason she sleeps more than 3 hours do they really think it is realistic to wake up a sleeping baby? I am so at my wits end. I read the book colic solved and I can so relate to it. They are blowing me off because my daughter is gaining weight. They dont care if she is screaming in pain. They also recommended we try Alimentum formula. Is there a difference between that and Nutramigen?
Apr 16, 2009
angela39
reflux
I am in Westminster Babbat. What doc did you go to? Also they say no to food allergies because she doesnt really have diarrhea. Her BM's are more runny than I would think is normal but I have been told its the nutramigen...Sone of my friends say they can hear rattling congestion in her chest/back of throat and I can hear it but it hasnt been present during our 10-15 min doc appts...
Apr 16, 2009
noor117
Strong, Beautiful, daughter who is thriving beyond imagination and a healthy, happy 3 year old.
Alimentum ready to feed is the only infant formula that is corn free. Alimentum powder even contains corn.

My daughter presented at birth with reflux symptoms. However, she never responded to any reflux meds and actually got worse on them. We now know she has eosinophilic gastroenteritis or EGID, and allergic disorder.

I am sorry for what you are going through, and that u are not being taken seriously. The rice cereal was aweful for my daughter. It just constipated her and made things even worse. We were later told that if you are using powder formula, you could have even added an extra scoop to make it thicker, or added oil. Both should be only done after speaking with physician and can actually make things worse if it is truly reflux because it will sit in the tummy longer.

I often wonder how things would have turned out had we gone to JH is boston, Maryland a lot sooner. I think it has been well worth traveling to get better care for my daughter. They listened and took us seriously. They have been working with us since September.

Apr 16, 2009
babbatt
Here's the deal. The EGID program at NJH is run in conjunction with TCH-Denver. I doubt the GI doc you saw is the same one affiliated with NJH (he RARELY sees non-EGID kiddos). http://www.nationaljewish.org/programs/pediatric/gastro-eosinophilic.aspx Was there a reason you went to a GI doc at TCH? The reason I ask is that the drawbacks of academic medical centers is that the doctor's research interests may not be what you're seeing him/her for. So, you might have gotten someone more interested in fatty liver than GERD/food allergies. I have to be honest, the medical record system at TCH is abysmal. To this day, they don't have my daughter's medication entered in her electronic medical record correctly, after I've told them on 3 occasions. I'm not surprised that the GI doc called the wrong pediatrician... The formula game is tricky. There are no infant formulas that are dairy free, soy free AND corn free. Alimentum ready to feed is the only one that is corn free, but it is made with broken down milk proteins. Neocate and Elecare are both dairy free (contains broken down soybean oils), but contain corn syrup solids. It is not unheard of for kiddos with reflux to do better on thickened feeds. Many rice cereals contain milk or soy, so it kinda defeats the purpose of a hypoallergenic formula. Powder thickeners (Thick It, Thicken Up) are corn based. I think you really need to get a care team that's all on the same page. Make sure that your pediatrician will advocate for you to the specialists. www.infantreflux.org/forum has a thread on GI doc recommendations throughout the country. Maybe you'll be able to find someone there? You can email me at WChing2@aol.com for some local resources.
Apr 16, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
FWIW, the manufacturer of simply thick claims it's xanthan gum is NOT corn based.
Apr 17, 2009
angela39
reflux
Wow you all have been so helpful and I so appreciate it! We went to Childrens solely because its suppose to be the best. My DH actually called and let em have it!! They are now being incredibly supportive. They are very indecisive though. They first told me to switch form nutramigen to alimentum . As i was about to buy it the nurse called back and said to buy elecare. Well found out you have to order it. So i ordered it, paid for it and they call back and say try Alimentum first. So today is the first day trying alimentum and its like pulling teeth to get my baby to drink it. She will take about 2 oz and that is it. Does it get better? Will she adjust and start drinking more? TIA
Apr 17, 2009
babbatt
If you're ever in a pinch, Colorado Pharmacy in Denver carries Neocate, Elecare, Duocal, SimplyThick, and HydraAid in stock and their prices are the same as the manufacturers. Hang in there! I hope the eating picks up soon!
Apr 17, 2009
babbatt
I forgot to mention. It will take up to two weeks for the milk proteins to leave his gut. If, after two weeks, things aren't improving, you will need to contact the GI doc for another plan. Also, compounded Prevacid is only good for 2 weeks after the date it is compounded. It will start losing efficacy after 2 weeks, so if the pharmacy filled a 30 day supply, you will have to have the GI doc call in another script so that you'll have drug that works. The solutabs are much more convenient as you don't have to worry about drug stability/degradation.
Check with your
doctor first!