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Mar 11, 2010
jean9
MSPI ?S again!-refluxmom, bgirl,eesmom, others?
Thanks to the moms who already are on my dd case! Other ideas/opinions are SOOOOOOOOO appreciated! SORRY I don't know how to insert spacesin this text! she does have a GI (now on 3rd one-1st 2 said g-tube and/or nissen) she has GERD diagnosis, but she has no dev. delays, and no history of lifethreatening GERD. skin prickj allergy testing was 'normal'-but saw ragweed, cat, dog, hamster. are the blood tests reliable? for just allergy and not intolerance? what is CYCLIC VOMITING syndrome??? WHAT solids can/can't you eat if doing MPSI elimination diet? Now she only eats:cheerios, kix, watermelon, cucumber, cheese, yogurt, egg, apple, banana, rye bread, grape jelly, butter--and of course vanilla pediasure (with duocal,procal powders and corn oil-nearly 50 cals/oz----which probably makes her feel crummy-but has kept her alive the last yr+ b/c she always limits her volume!) obviously yogurt, cheese, butter are out... THANK YOU TONS!!!!!!!!!
Mar 11, 2010
jean9
i forgot
sorry i forgot to mention: we had endoscopy over yr ago: supposedly no EE or celiac., no esophageal damage, slightly dilated LES, 'normal' pylorus--but she was on prevacid at the time. is that wrong? should we try buffer babies? Is the lactose really a prob? what does bufferbabies/caracream taste like. dd refuses new/strong tastes.
Mar 11, 2010
eesmom
Mason Matthew born at 28 weeks on 12/10/2007 with MSPI and severe reflux. Still on Neocate, strict MSPI diet, recently weaned off of Prevacid.
Evalise Adelle came along 4 weeks early on 12/2/2009 we thought we could be without this reflux stuff but no such luck. She's MSPI as well, off of breastmilk :-( and on Neocate for MSPI, has eczema (better with Neocate), and worse reflux than her brother did! Doing Buffer babies and Prevacid-
Oh my, let's see. Sorry, I don't know how to add spaces either! What kind of allergy testing did she have? My understanding is CAP-RAST is the way to go. Buffer babies: tastes sweet and pleasant. She wouldn't likely have to take that much (maybe a few ml's several times per day, it can be mixed with other liquids). Lactose generally isn't a problem and true lactose intolerance in the pediatric population is rare but it seems to bother some little ones anyway. Diet: We are conservative here and eliminate soy oil as well as soy lecithin. That means most all breads are out. I use a bread machine and make my own, it tastes good and is safe. I can provide the recipe if anyone wants it. Most any fruit is ok, we avoid apple juice and sauce as it makes DS's reflux worse as will most citrus fruits. We season meat (ground beef, chicken, pork) and he eats that. I read all labels carefully, it seems a lot of organic products don't use soy oils or lecithin. I have found certain brands of hot dogs, fish sticks, lunch meats (ham mostly), sausage, crackers etc that don't have soy oil or lecithin. Jello is safe, I use bisquick and make pancakes/waffles and substitute water for milk, often adding blueberries or pumpkin. There is a website called MSPI mama with a lot of recipes on it. Be warned though, she uses soy oil and lecithin so you have to further modify if you're going to eliminate those things. I make a good meatloaf he can eat, beef in the crockpot with veggies, chicken dipped in seasoned Panko bread crumbs (other bread crumbs contain soy/dairy) or I use the bread I baked for bread crumbs. All veggies are pretty much safe unless you add butter or cheese to them (obvious I guess). Cheerios (plain/honey nut/banana/fruit) are all MSPI friendly if I remember correctly, not sure about Kix. Oh yes, vegetable oil is generally soybean oil, we use canola instead with omega 3 added. Pediasure is NOT MSPI friendly but if I remember your original post you know that and are considering other things. That's all I can think of for now. Feel free to email me if you'd like more MSPI friendly foods/brands or anything else. Jodi
Mar 11, 2010
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
your child sounds somewhat like my son. He was a HUGE puker until about 5-6 months ago. CVS..Cyclical vomiting syndrome was looked at for Z, but he puked every day all day...CVS sufferers can go weeks without vomiting, then it'll start up...also there is pain associated with CVS...reflux MSPI puking usually doesn't. Z is currently on a pediasure/elecare/duocal mix that gets to 50 cal/ oz and he tolerates it well...now...took a while. His volume is so low that we have to do that. No one is thrilled with it, but hey, he drinks it, keeps it down and gains (verrry slowly), so whatever. we do a couple purees too and come cheese, but that's it. We had blood testing for allergies a year ago, but they were a mess...we had the sin prick last month and it was a real eye opener...much more reliable. Our endo was also done on meds..he had a floppy LES and everything else was fine...we ran fromt he doc that wasnted to fundo Zacky. We made the right decision...our only problem is feeding and size...otherwise he's totally fine.
Mar 14, 2010
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Keep in mind there is another type of food allergy (delayed in nature) that will only possibly show up on patch testing. My daugher has an obvious reaction to dairy, but is scratch/RAST negative to it. My son goes to Phila. Children's Hospital and they did all three types of testing. The saying goes "reactions trump test results."
Check with your
doctor first!