Posted By Posting
Mar 26, 2009
evan's mommy
Where do I begin? Baby with silent reflux
Hey everyone. I just stumbled upon this website and I am so glad! I have been going through so much heartache with my sweet boy. He is five months old and has had silent reflux since 6 weeks or so. It has gotten so much worse over the last couple of months, which is to be expected, so I hear from my GI. He is on Prevacid (15 ml tabs) and carafate as well as mylanta as needed. We had him on Bethanechol, but was not seeming to help. He is now for the past 2 months not been able to sleep for more than 2 hours during the night, he will wake like clockwork at 2 hour mark and want to eat b/c he is refluxing. We do feed him every 2 hours for if not, he will SCREAM in pain. It is often hard to hold him off even 2 hours. He is getting 3 oz. at a time, which is more than he needs, but the formula soothes his throat. The last couple of weeks have been even worse, going only 1 hour or less and waking. He does not nap good during day either - 30-45 mins max. He squirms like he wants to jump out of his skin(may be abdominal cramping?). He also seems to have the leg/arm spasms where his legs and arm suspend into mid-air involuntarily ( I have thought too about Parkinsons) We have him on Elecare formula and have started rice cereal in the past week. We have tried elevating, in fact he is still in his cradle swing, won't sleep well in crib elevated, he seems to wake even more in his crib. After reading some of the posts, I am wondering if we need to try different meds. I know that my GI has said that she has nothing more up her sleeve to try, but am really starting to get frustrated with the "he will grow out of it, hang in there" response. He is obviously in pain. We have done all of the testings, Upper GI, Ph probe and scope and everything looks normal. It is just SO HARD, as you all know and I am now realizing that there has to be more relief out there. I would appreciate any feedback on similar stories, especially the frequent waking...and sleep apnea? I often wonder if this is what he has. I have monitored him when he is waking and it does not seem like he isn't breathing, but does seem like at times when he is waking, it is like he is seizuring ( that is the best way to describe it). So sorry to babble on and on. I am just SO relieved that I have a place to go where I know others have been. It is so hard and sometimes you feel so alone and no one understands.
Mar 26, 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!
Hi mama - welcome. My dd was dx'd with mild reflux, and it was hell on wheels. It does get better, I swear! My dd is now 18 months and has been successfully weaned from meds. To put it in a nutshell, we tried it all - testing, slings, elevated "sleeping", host of meds and formula switches, etc...and finally got it right after 5 months of sheer torture that nearly ripped my sanity away.

How are you dosing the meds? Prevacid needs to be given on a completely empty stomach - at least one hour after last feed (preferably 2) and at least 15 min before next one. No meds should be given with 2 hours on either side of Prevacid either.

Can you split the Prevacid dose (1/2 morning and the other 1/2 evening)? Have you asked about adding an H2 blocker? We did Prevacid in the evenings and Pepcid in the morning, which worked so well for us.

Rice can be VERY hard on these kids tummies. We did oatmeal and skipped rice, which was tolerated very well. Formula - I found that since my dd didn't need a hypoallergenic formula, she actually did better on regular (We did them all I think, stuck with Nutramigen for a while, but settled well with Good Start)

One thing to ask the doc - we were started on probiotics by our ped - it does a fabulous job to rebalance the sensitive gut. May be worth checking into. A few other moms here have used them with good results as well. As for sleeping, our ped also got my dd onto a Magnesium supplement (prevacid blocks the absorption of a lot of minerals, and Mg is so very necessary for regulating the CNS and helps with irritability and sleep patterns. Check it out on the web and ask about using it. HTH - prayers are with you!

Mar 26, 2009
mely
Amalia 11/1/06, Silent reflux- Weaned off prevacid in the summer- back on again 15mg. Back on lactaid. Atalia- 6/17/08 DX with GERD and colic at 9 days of age. Appears to have mild MSPI. Upper GI. On Prevacid 22.5mg. Successful transition to whole milk! Eats everything!
Pic. Amalia and Atalia having fun at home.
Hi- I have not posted here for advice in awhile but I am waiting for my little one to fall asleep and decided to look real quick. First- you are in the right place. The ladies here helped me tremendously!!- after God- my life savers!! If he is on Elecare- there is really no other formula to try as far as I know. Rice cereal made things much worse for my first one (so I did not even go there for my second one)(many refluxers don't do well on it)- I would go for oatmeal. If you try oatmeal, make sure its beechnut or organic- the other stuff tends to have soy in it. My little one went through 4 meds before finding relief. - and needed a dose of 22.5mg of prevacid and 1 month on it before finding relief. I would push for a med increase- the marcikids website offers suggestions for dosing, and if he is 5 months old- he is probably at a weight that 22.5mg is OK. If he has MSPI (I would think so if he is on Elecare), sometimes the little milk product (I think is a form of lactose) in the prevacid can make things worse- so if after a 3 week trial on an increase that does not help, I would consider prilosec, axid or nexium (personal preference axid or nexium since prilosec did not help my girls, but it's helped others). Many kids with reflux suffer from sleep apnea- if you suspect it- have it checked with a sleep study ASAP. Some kids need sleep monitors to check for sleep apnea while they sleep. I would also recommend a tucker sling to sleep in- it really elevates and helped us a lot. And I would not try any foods until his reflux is under control- because you will not know if he is allergic/intolerant to the food. If you have a chance, read my girls' story- my first one sounds like him regarding the sleeping patterns and the pain. Rely on God and these ladies- hang in there mom- hugs!!! and God Bless.
Mar 27, 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.
First of all, ((HUGS)) to you...it is so hard to see your little one suffering, and to suffer yourself from the effects of sleep deprivation, and feel that there is nothing being offered to resolve the situation. I'm so glad you found this site, where you will find abundant support and information. Welcome!

You mentioned that you have done several tests related to GERD and that "everything looks normal." Do you mean that they are not seeing signs of reflux episodes? Is that on, or off medication?

What you describe regarding your son's sleep is certainly similar to what one might see with sleep apnea. My son has sleep apnea, believed to be the result of reflux, and possibly low muscle tone in his throat, and he has never, in almost two years, slept for more than 3 hours. For many months, he woke every 10-60 minutes and slept 5-7 hours out of 24. It was hell, and I had a very hard time getting his doctor to take my concerns seriously, as she was inclined to believe that it was all behavioral. The jerking action you describe could be normal startling behavior, it could be the typical startle of a child who has just started breathing again, or it could be seizure activity. It is very important that you consider yourself the only advocate for your son's health -- it doesn't matter as much to anyone else in the world as it matters to you, and he needs you to speak for him. You are the customer in the health care system, and while doctors should guide and educate your decisions, you have a right to request specific testing to rule out health problems. The two tests I would educate yourself about, and possibly request, are a sleep study (conducted in a certified sleep laboratory) and a sleeping EEG. The EEG can rule out seizure activity, and the sleep study can rule out sleep apnea and also provide a wealth of information about the nature of your son's sleep.

I recommend that you visit www.sleepapnea.org to learn more about pediatric sleep apnea. There is a forum there, as well, for pediatrics and you can get lots of support and information there. Here are two more sites you might find helpful:

www.bcm.edu/oto/grand/121996.html

www.standford.edu/~dement/childapnea.html

In addition to doing a bit of research, I suggest that you start keeping a sleep log, if you haven't already. You want to keep track of when he goes to sleep, when he wakes, how he wakes, how long he is awake, and what his total sleep time is. This is very helpful information when speaking to physicians about sleep patterns. You may also want to explore the chapters on sleep cycles in Richard Ferber's book Solve Your Child's Sleep Problems. It is very informative. (Don't bother with the sleep training chapters at this point, as even he does not recommend sleep training for little ones with unresolved health issues.)

Once again, welcome, and I hope you find the answers you and your son need soon. In the meantime, know that you are not alone when you are up every hour or two all night, and desperately wishing your little one would nap. Most of us have been there, and many of us are still there with you!

Mar 27, 2009
kubicki5
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.
Hi there. I am so sorry for your sleep deprivation. It is the worst of it all and we have all been there. One year I did all my Christmas shopping online all night long since I was up all night!

I just wanted to promise you that you will sleep again some day. I never thought I would but I made it through. It is hardest when they are so little.

You will receive invaluable advice on this site.

Mar 27, 2009
mommy2k
I don't have any good advice. I just wanted to let you know that my son is 3 mos old and never sleeps it seems because he has silent reflux. It seems to make things so much worse when we're so sleep deprived. I remember when my daughter was a baby we had a gi that said he didn't know what else to do and he was pretty much done, we found a new gi. We love our ped so she referred us to a new one. So if you don't feel like your gi is doesn't know anything else to do maybe a new one might have some new and fresh ideas. I will think about you and probably a bunch of other mommies with reflux babies when I'm probably up a lot tonight. We just need to keep believing that the answer is there for them to help them feel better. Best of luck and Hang in there!
Check with your
doctor first!