Home › Forums › Infant Reflux Support › HELP!!! › What now?? So confused!
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September 4, 2007 at 11:42 am #42140
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InactiveI have no idea what to do. I don’t even know where to start!!! I posed here about my 8 week old DS a week or so ago. I got some great advice!! One wonderful lady suggested a book, and I have been reading it. It’s great!!! Very helpful.
I just don’t know what the next step I should take should be. My DS was on Alimentum, we were NOT seeing any relief from it. I talked to the Ped. last week, and we decided to put him on Soy just to see if it made any difference at all. He’s also still on Prilosec 2 times a day, (1 cc 2x’s a day) and still getting thickened bottles.He seemed to be doing great for the first 3 or 4 days on Soy. I thought GREAT…maybe this is going to help!!! WRONG. The past few days have been heck. He’s still screaming after feedings, NOW he’s having constipation problems. He acts like he wants his bottle, then he gulps it down, and it runs out of his mouth, or he spits it out. He also screams like he’s in pain. I MAY have seen a small amount of blood when he had a bowel movement. I could be wrong about that, but I think I saw a small trace amount. He’s also drooling a lot. I mean, are 8 week olds supposed to drool already??I am so frustrated! I don’t know what the next step I should take is. I don’t think the Ped. is really going to be proactive in doing any testing unless I pitch a fit. I am trying to decide if I should call the Dr. AGAIN, or blame the horrible past few days on constipation?? What should I do about constipation??Thanks for any advice. I’m just having a bad morning already, and am frustrated!KellySeptember 4, 2007 at 12:08 pm #42141Inactivegoing to soy from alimentum is like a step backwards…does not make a whole lot of sense to me, because alimentum is for babies that cannot tolerate soy or milk formulas. however alimentum still contains broken down milk proteins that some babies cant handle….and thats when they need neocate. oh and usually babies that cant handle milk protein also cannot handle soy protein, there is a term-MSPI.
as for switching formulas there is always a honeymoon period and then goes back to how it was when they arent tolerating it,also if your PPI is compounded you need to make sure its being made a specific way and that the dose is adequate.sweetcheeks2007-09-04 12:09:47
September 4, 2007 at 12:22 pm #42143InactiveHow would I know if it was MSPI?? Not meaning that to sound dumb, but are there specific symtom/s that come with that? Maybe I should check into neocate?
There is just so much to know and to learn about this whole process. It makes my head spin. I’m so scatterbrained lately. I think it’s from lack of sleep.KellySeptember 4, 2007 at 1:34 pm #42146InactiveI have to agree with sweetcheeks that soy would be a step back from alimentum. MSPI (which may be the problem with your lo) would mean that he cannot tolerate milk or soy protein. For Landen, there was blood in his stool and just an entire GI upset that did not end (bad refluxing and bad feeds, etc) until we got off of all milk based/soy based including alimentum. He seemed better on alimentum until the milk proteins (although FINELY broken down) built up in his system and attacked him once again, causing blood/mucous in his stool. His pedi didn’t believe that he was intolerant to Alimentum! Not until he saw the diaper I brought in. He just hadn’t seen MSPI that bad in a baby I guess. There was no improvement until we switched to Neocate.
I know all of this can get really overwhelming. Hang in there. I would say if he did bad on alimentum you may want to try Neocate. Otherwise, maybe try Nutramigen or Alimentum again and give it a while and see if he can handle it. There are babies on this board that do ok on them.September 4, 2007 at 1:45 pm #42147InactiveThanks. If this isn’t too gross…..His dirty diapers were kind of yellow/not really runny, but like toothpaste consistancy when we first started soy. He was having constipation problems on Alimentum (My DD did NOT)!!!! Now it’s back to being constipated again. I cut out the rice cereal in his formula for a while while on Alimentum, but he was still having trouble going. I started giving it to him again (rice cereal) b/c the Ped told me to try it again. I just don’t put as much. I don’t know whether to cut rice cereal out or give it to him!!!?
I am so confused! Is Neocate as expensive as Alimentum? It was seriously breaking my bank. I wish they made a generic version. I will go broke buying it!
KellySeptember 4, 2007 at 2:08 pm #42148Inactiveok…i totally do not agree with giving rice to a one month old! there is research to suggest that kids under 1-2 years of age cannot digest grains because they lack the proper enzymes to do so. i held off on grains until 12 months. plus, rice is terribly constipating. in my experience, peds are clueless! he is already sending you backwards by putting him on soy.
as for the neocate, it is a lot more than alimentum. i do know that wic covers it though. my ped had never had a child on neocate, and i put my son on it and saw an immediate improvement.for the constipation, you can try some brown sugar or karo syrup in the bottles.its still important to double check how your compound is being prepared….and check the dosing at marci-kids.com.September 4, 2007 at 2:23 pm #42149InactiveSoy can definitely be constipating, and rice can be hard to digest, but thickening the formula for both of my boys was a life saver for us. Dylan did well on Rice, but Carter couldn’t handle it so we tried oatmeal with him and it worked great. We had to do the beechnut that was soy free for both boys but it really helped my boys. Both were preemies and both started with thickened formula before discharge from the hospital prior to their due dates, so I think sometimes it is trial and error to see what works. What works for one baby might not work for another.
As for the soy, I have known of two babies in particular (one on this site a while ago and one good friend) that it was the answer for them and the hypoallergenic formulas were worse than the soy, but if your child needs something more gentle to digest that the soy is definitely not typically the answer. Neocate is the gentlist, but a lot of insurance companies want to see that you have tried almost all of the over the counter formulas first so that your doctor can justify the script for Neocate and then you have a better chance of getting it covered. It sucks that doctors are also held hostage by the insurance companies so they have to try lower doses and other formulas first, but usually they can pretty quickly (with noise from the moms of course) can move onto the specialized formulas or higher doses if they are comfortable prescribing them.Hang in there! It is really hard to have a reflux baby, but also with an older child in the house that wants attention as well can be really difficult to juggle.Hopefullly you will find some great answers soon, but unfortunately there is a lot of trial and error.Ann MarieSeptember 4, 2007 at 8:18 pm #42166hellbennt
Keymasteryou asked about how to tell if it’s intolerance(mspi) or allergy- well you kind of asked it
go to the MSPI forum and then look for a top post called ‘MSPI what I have learned & allergy info’
from there, go to page 2 & scroll down to where you see ‘google cache’just below that is an EXCELLENT explanation of intoleances & allergiesSeptember 5, 2007 at 10:46 am #42189Inactivewhen we tried soy it constipated rustyn too – he also rufused alimentum – pushed bottle away & screamed even more! so i went back to good start w/rice. hang in there – wish i had advice for you – but I am new here too ;(
September 5, 2007 at 11:04 am #42190InactiveDid Good Start seem to help? Did you add the rice yourself? I saw NO improvement with Alimentum either. He still screamed after feeding. I gave it several weeks too.
Good Luck too!KellySeptember 6, 2007 at 11:51 am #42238Inactivemy daughter is on Good start with no rice and she is on Nexium. Gdod start was our 5th formula we tried and have been on it for 1 1/2 months and this formula seems tobe the right one. Her bm’s are normal consistency. Befor she got on the Nexium she also woudl refuse to eat and just sream. My lo is also on 2 other meds for reflux Periactin and Erthryomycin.
Ashlynn 6-3-07 reflux since birthDanika 11-3-07 NOREFLUXSeptember 6, 2007 at 1:48 pm #42242Inactiveyes, the good start is the best one he’s been on so far (it is our 7th one!!!!!) i add gerber rice – doc said 2 tsp per ounce of milk – rustyn takes 4 oz bottles so I add 8 tsp rice – just thick enough that you can tell its thickened, but not tooo thick. i did have to slit the nipples a little bit. he seems better with the rice. but neither the good start or rice are REALLY helping – he still screams during taking bottles
September 6, 2007 at 2:59 pm #42246InactiveI also noticed a changed when we quit putting the ceral in her bottle. I think that the rice was upsetting her stomach. Her GI Dr told us to do this.
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