Posted By Posting
May 02, 2009
mommy2k
disagreeing with GI
I called Kody's GI on Friday morning because he has just been so unbearable that I thought maybe they could help me. They called me back later that afternoon and the doctor who we haven't seen yet tells me that he doesn't have reflux. He said that he has a milk protein allergy. I was totally upset and frustrated. He told me that I should take him off the meds and try the elimination diet or alimentum. I told them that our lives would be a living hell if I took him off of the meds. They said it wouldn't hurt to keep them on for him but if they're not working anyway then don't give it to him. AAAHHH!!! I disagree with the milk protein allergy for a couple reasons. I have been df for almost 2 months and no improvement with anything. I also have had him on similac sensitive before and he didn't do worse on it. I don't know what to do because my hubby and I don't think that is it. I am willing to try the elimination diet but my gut says it's not that. Kody won't drink alimentum for us at all even with it mixed with bm. I don't want to totally go against the gi but I'm disagreeing with him. Has anyone disagreed with their gi doctor before? I don't want to go in there for the first time meeting him and be telling him that we disregarded everything. But I'm afraid that he's going to rip Kody off of his meds and he'll be so much worse. The gi doc also said since he was irritable on prevacid then it can't possibly be reflux. I don't ge it. Can't some meds just not work or irritate some children. Kody also wasn't on anything else in the meantime as we waited for it to work. Any advice or opinions would be appreciated. Kody was feeling better today and I had just stopped taking antibox on Wed. and he was getting over a bug. I might have jumped the gun on Friday but I was hoping to get some extra help from them instead I ended up just crying after getting off the phone. I have no idea what our first visit will be like now which is May 12. AAAAHHHH so upset, confused and tormented about what to do next with our little guy.
May 02, 2009
mommato3
How much prevacid is he on? How big is he? He can still be in pain on prevacid if it isn't dosed high enough and he's having acid breakthrough. When you were on df diet did you elimate all dairy and soy proteins. Lots of babies are MSPI which means milk and soy proteins. When you go to the GI just have everything written down. When we did df diet, this is what happens. When we tried similac sensitive, this is what happens and so on.
May 02, 2009
mommy2k
He's currently not on prevacid. They took him off of it because he was irritable on it. He's almost 5 months old and weighs almost 15 lbs. He's currently on axid right now. I did eliminate all dairy. I was a big label reader for it too. I didn't do soy because I felt that he wasn't getting better from the df diet that I felt it to be pointless. I will try to write everything down in the next week and a half. That's a good idea. Does anyone know what symptoms would be if it was a MSPI? He doesn't ever have any blood in his stool. He has been having on and off runny stools but they're mustard color except when I was on my antibiotic then they were bright green.
May 03, 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.
We didn't have blood in the stool except on milk and my dd is allergic to multiple foods. Really, unless you eliminate soy along with the dairy you're not doing the full on elimination for MSPI. Dr. Sears has a diet that is totally boring and totally sucks to do, but it will help you figure out (once and for all) if it's a food issue. Just add back the suspect foods one at a time and document everything - that way you can show the GI what you've done.

FWIW, Isobel initially had great results with Prevacid but after a few months the side effects really kicked in. Irritable, sleepless, did I mention irritable? Different drugs for different folks.....

May 03, 2009
mommato3
I remember your posts about meds now. he could still be fussy on Axid if it isn't dosed high enough. MSPI doesn't always mean blood in stools. My 5 month old is MSPI. Soy=blood in stools breast milk & Alimentum=crying, increased reflux, no blood Elecare(super hypoallergenic)=much relief, still severe reflux but it helps vomiting, tummy cramps, going crazy on his bottle in pain
May 03, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
similac sensitive is lactose free- NOT milk free. the difference between a milk allergy and lactose intolerance is: a milk allergy (MPI/MSPI) is an allergy to the milk proteins casein and whey and lactose intolerance is inability for enzymes to break down lactose.

i will say i b/f emily for 5 months on the elimination diet and she was sooooo sensitive to everything i ate that even hidden dairy and soy (which i found out about 3 months in to the diet) would be a problem for her, i mean come on would you expect bread to have milk in it? or vegetable oil to be soy??

emily would not drink nutramigen to save her little life- at first. it took a couple days of only bottles and only offering the formula for her to get used to it- you can even call enfamil and they will tell you it is a hard formula for a infant over 6 months to take but they eventually will. when we switched emily to nutramigen you would SWEAR she did not have reflux. things were so good we took her off meds.... then BAM it was back and more horrible then before. in the end emily reacted more to soy then milk anyway.

i think it's perfectly okay for you to disagree with a doctor its what second opinions are for. he could have non acid reflux that would make him irritable on prevacid besides i don't think he should have said anything to that extent, w/o seeing your son first-jmo
May 03, 2009
johnniesnewmommy
I just took my son off prevacid after he starting screaming for a hour at a time and pulling out his hair and scratching himself. I did try to break it up and give him 1/2 in the am and the other half in the pm and it made it so much better - not nearly as cranky, but then he broke out in hives every where after I gave him a dose so he's not on it anymore. I really believe it was the medicine that caused him to be a screaming monster though! You might try the 1/2 in the am and the other 1/2 in the pm and see if his mood improves. I really think the doctors just guess a lot until trial and error finds the right solution. Document everything and try what they say within reason and then when you go in you'll have something to support why you think they are mistaken. Chances are by the time you get there and they see him they will have no idea they suggested it in the first place. Thats just my experience. Hang in there- this to shall pass.
May 04, 2009
mommy2k
made a decision
Thanks everyone for the input and experiences. It's so hard to figure things out and especially bfing. I decided to start pumping yesterday after we had a scary choking incident on me on Sat. I started pumping and for now he's doing so much better. Of course he started feeling better on Saturday. He hasn't had explosive poops and he's not been uncomfortable or gassy. We haven't even had to use mylanta or maalox for a few days. He's a little happier too. I can't explain it but I haven't changed anything from what I was doing because I was going through the thinking process and preparation. He has been eating so much better on the bottle. He's having a little bit better nights too eventhough he's got either a bad cold or he's teething or a little bit of both. His nose is runny and he's also chewing and drooling. I probably jumped the gun trying to call the gi on Friday. I will be writing things down of what I'm doing. At least then I can pinpoint what's working and what's not. With sleep deprivation I tend to forget a lot of things. Although Kody went 6 hours last night without eating and slept in 3-4 hour increments. This is a milestone for us. I'm crossing my fingers that this isn't a fluke and that it continues to work for us. We still don't know what we're going to do if he needs to ever be supplemented with formula. I realize the similac sensitive is milk based but he still never had a problem on that formula. He did have smellly poo and gas with the soy though. But he was also getting over rotovirus so we don't know. I guess I'll decide when that if it comes down to that. Thanks ladies! Wish us luck!
May 04, 2009
mommy2k
I forgot to mention that I think that the reason I was so upset on Friday was that this gi wanted to take Kody off of his meds. It's my understanding that even if they have an allergy that the reflux is there because of that which can be painful so it didn't make sense to take him off of his meds. Anyway, his pain is under control for now so it probably was the antibiotics I took last week. I think I have my work cut out for me with the gi to figure things out.
May 04, 2009
mommato3
Good luck!!
Check with your
doctor first!