Home › Forums › Infant Reflux Support › HELP!!! › The Pain is Back!!!
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May 23, 2006 at 9:16 am #8494
Anonymous
InactiveSigh….so I thought I had it figured out…my 3-month old had a few great nights of sleep but now she is back to screaming in pain from about 2:00 – 4:00am. She is arching her back and writhing and screaming…sometimes letting out a few toots (which leads me to believe its gas).
She had terrible gas all the time when I was breastfeeding so now she is on only Alimentum formula (has been for about a month). She takes 7.5mg of Prevacid at 6pm and 1.5ml of zantac at 4am. I also give her mylanta cherry supreme occasionally. In addition, I started to give her 1/16 tsp of probiotics once a day about a week ago.
So those are the only things she is ingesting….WHAT COULD BE CAUSING THIS PAIN???? I’m so frustrated because I feel terrible for her and feel like there is nothing I can do but hold her and listen to her scream until its over…then she just passes out to sleep again. I’ve seen how good she can sleep when she feels good so that makes it doubly frustrating. Does anyone have any ideas?????
I swaddle her for sleep — could that be bothering her because she can’t move in her sleep to expel the gas?? Could the probiotics be giving her problems??
When I tell the GI specialist about this he says “use mylicon” or “sorry there isn’t anything we can do for the gas.” argh….
May 23, 2006 at 9:57 am #8500InactiveIt sounds like she isn’t getting enough prevacid. Go to http://www.MARCI-kids.com and look up the dosing recommendations. She should be getting a dose 3 times a day.
May 23, 2006 at 10:43 am #8501InactiveYeah except the GI doc won’t increase her meds…says its a generous dose for someone her age/weight (she only weighs about 11lbs). He wants to do an endoscopy before he’ll change anything….but the endoscopy is scheduled for the end of June…i can’t do this until the end of June. And I don’t want to just increase her meds myself but i’m almost to the point of resorting to that.
May 23, 2006 at 1:01 pm #8505InactiveIf you bring the dosing information from the MARCI-kids site to your regular ped. do you think he/she would be willing to change it? That’s what I did.
May 23, 2006 at 1:25 pm #8507InactiveIts possible but not likely — the pediatrician wouldn’t prescribe anything for her reflux except zantac…they wanted to defer to the GI doc. I mentioned the marcikids info to my GI doc and he was astonished…said its way too much for her age/weight….
Anyway, I just got news that her endoscopy was moved up to 1 June (from end of june) so hopefully I will get some answers then….
May 23, 2006 at 1:55 pm #8509InactiveThis is not surprising. Most docs out there are sorely underinformed and misinformed when it comes to using and dosing PPIs in peds. Most of the information that they get is from their drug reps, and this is often inaccurate and incomplete. Otherwise they’re usually operating off of 10 year old information. This is an area that we specialize in here at MARCI-Kids, and we stay up to date with all of the latest research, along with the research that we do on our own here. I would try to find another doctor who is more willing to actually listen.
May 23, 2006 at 4:03 pm #8513InactiveCould you look up a new gi doc in the link called “find a gi doc in your area”. Lots of good docs. posted from moms here, docs that listen and prescribe enough ppi so baby is not in pain. Also, when we switched to alimentum…. everything was fine for a while and then the painful gas started. The trace milk proteins built up and she started reacting to them. Her poor tummy was giving her alot of pain. We switched to neocate and it took a good week for her intestines to calm down (of course she became constipated… but the gas was gone!) Hope she feels better soon… maybe you can give zantac at bedtime?
May 24, 2006 at 6:42 am #8534InactiveThat honestly sounds like it could be colic? The ped GI I took Aidan to gave us a script for Levsn “colic drops” which is to help with gas and the tummy cramps babies with colic get. It’s not widely used anymore because it lists a lot of side effects, but I have used it when he super gassy and is in pain and nothing else works..just might be worth a mention? Maybe cut out the probiotics just to see if that was the culprit also? If she stays the same you can always add them back in. From all the things I have read, and talked to Aidan’s dr, probiotics are sometimes harsh on the bellies of very young babies, most things say not to give them til 6 months old.(even though the bottles give doseing info for even newborns).Aidansmom792006-5-24 6:44:32
May 24, 2006 at 7:31 am #8536InactiveNot all doctors follow the Marci guidelines and that is fine – but your
DD’s dose sounds WAY low and the fact that it’s only once a day even
worse. I would guess that the dosing plus perhaps the Alimentum might
be causing problems – Alimentum can be great for many but if she’s very
sensitive to milk proteins the trace proteins in the formula can build
up and cause painful gas and other problems. I’d really push for a med
increase/at least 2xday dosing and perhaps a Neocate trial. What seems
like gas is often actually lower esophageal reflux…May 24, 2006 at 9:35 am #8544InactiveWell, the GI doc called last night and said he won’t increase her dosage until she has her endoscopy (1 June) — and then only if he sees something serious — so I have to wait until then and see what happens. He insists that its a good dose for her and that I should put oatmeal in her bottles…but that I’m doing everything that can be done right now. Sigh….
Last night I cut out the probiotics and tried not swaddling her (she is really protesting her swaddle lately). She didn’t have a “pain episode” like she usually does but she didn’t sleep as well in general, i think because she was waking herself up every 2 hours with her arms/hands.
May 24, 2006 at 9:39 am #8546InactiveAgain if I were you I’d get a second opinion. Is she spitting a lot? If
not, oatmeal likely won’t help and might only make her more gassy if
her system is not ready for it. I’m sure one of us can help you find
someone else.She may take a few days to adjust to no swaddle but might sleep better
and start finding her thumb to suck soon – worth keeping up with IMHO.May 24, 2006 at 9:48 am #8548InactiveThe problem with the second opinion is my insurance…and the insanity that is involved in going to a new doctor…I guess I could just get a referral from my ped and that would solve it….its so complicated. But I will look to see if I can find someone. I am in Northern Virginia….if anyone knows of anyone.
His thought on the oatmeal (I told him flat out i won’t give rice cereal because that DOES make her gassy) is that even though she is not spitting up and I can’t see anything coming back up, it is coming back up and hurting her…the oatmeal would keep it down. I don’t know…i’m reluctant because i think it would bother her stomach….
Everything is such a crap-shoot you know? 🙂
May 24, 2006 at 10:15 am #8549InactiveOur daughter is just slightly older than Ella (born 2/2) and we swaddled for a while then decided to stop because we figured eventually it may cause her to get angry not being able to move more freely. What we did do was get a positioning wedge (at Target but I am sure more places have them) that we put her into. It hugs her on both sides then we take a blanket and tuck it in underneath the sides of the wedge. This way, she is snuggled up, but not restrained. Her arms are out and she is able to chew on her hands/fingers to help sooth herself. It wasn’t long after doing that that she slept all night. It is so funny to come in at night and see her with her arms sprawled above her head – she just looks so happy and relaxed. One night, I wondered what the strange sound was on the monitor so I went into her room and it was her sucking on her hands – it’s amazing how those things amplify sounds. I also think that the right dose of medicine will make a huge diffference. Sorry this got so long – I guess I don’t know when to quit typing!!
Robin
May 24, 2006 at 10:28 am #8550InactiveI’m sure your Ped would give a referral if you explained the situation and asked nicely.
See here – https://www.infantreflux.org/forum/forum_posts.asp?TID=660&am p;KW=Virginia
someone recommended a Dr. Lynn Duffy in Virginia and someone else a Dr. Ann Kessel.
Check also: http://www.geocities.com/HotSprings/Villa/2193/drspage2.htm
I’d hold off on the oatmeal but that’s just MHO. That would be last
resort for me – after getting on right med dosage, right formula (she
might need Neocate), etc. And I’d likely thicken with Simply Thick
instead of oatmeal if a thickener were needed – I think she’s too young
and too sensitive a tummy for oatmeal (or any grains really).May 24, 2006 at 10:31 am #8551InactiveSo was the positioning wedge you used one of the ones that is sort of inclined or one that is flat on the mattress? I have the slightly inclined ones because of her reflux….but I haven’t tried tucking the blanket around her…it might actually be good to try tucking the blanket around her with her arms down at first so she can fall asleep and then if she gets her arms free hopefully she won’t wake herself up. Or I might just swaddle her a little more loosely so that she can get her hands up to her face but she won’t startle herself.
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