::aitirone::

MrsVictoriaB

HeyI don't know if you got my page a week or two ago.. but if not. Jake has the same protein allergy Jordyn has so I know all about how hard the diet is. I stayed on it for 8 months and finally switched Jake over to Neocate which is the rx formula for babies with these severe allergies.Our GI doctor says most babies grow out of this by the time they are 1 so here is hoping for our babies! We have to challenge Jake in 2 months to see if he is still allergic to milk and all his other sensitivities.I was slowly able to add soy and other things back in after a few months and only had to stay off milk protein. That was still pretty hard because I'm sure you now know how milk protein is in everything!! If you can go to milk protein free only and want help, let me  know. After 8 months I have a ton of menu options to eat that are all milk protein free.Good luck and just know it's common and you aren't alone

aitirone

Heyy!! I didnt get the page. Im sorry!! Wow - so you lived on grilled chicken and veggies for that long? I thought your baby was only allgeric to the milk. I cant have ANYTHING. Whey, soy, nuts, dairy, lechtin...you name it. Im dying! FI is trying everything he can to come up with stuff for me to eat. Last night i had chicken hummus & mushrooms haha. Did Jake have allergic colitis? Its so scary. Our GI is amazing though - I am trusting everything he is telling me to do so Ill do with the eating! We go back friday to the GI to see her status. He said she should have showed major improvement this week if it was a protein allergy. Personally, I dont see much change. But its def something cause her poop tested positive on that test strip thing that she was allergic to something I am eating. I can deal with alot of the stuff, but its the carbs I miss haha. It's crazy though how you cant eat ANYTHING! We even contacted a nutritionist and the list of foods is TINY. So what exactly happened with Jake? How did you realize something was wrong? How long did it take for him to get bette? Sorry - a million questions. Im so thankful for you writting this to me! Please keep in touch, bc i know ill have more questons!!

MrsVictoriaB

I did yes! It was so hard and admittedly I hated every second of it, but I kept breastfeeding A) for the benefits and because Neocate is $600 a month and not covered by law under FL insurances so we couldn't afford a year of that.We tried the other sensitive formulas like Alimentum but Jake reacted to the very little protein in those too.He was never rxed with allergic colitis.. we realized something was wrong when he was about 10 days old. He would scream and scream and never sleep. I knew babies cried but not that much! He looked like he was in so much pain and nothing I did helped.So after many pediatrician visits, they finally tested his poop and found blood in it. After they sent us for blood tests and an upper GI study where he had to fast and go for xrays and they discovered his allergies and that he had reflux.I was told to immediately go on the TED diet. (the total elimination diet) and ate only turkey (was off chicken for some reason) fruits and veggies. Then Jake reacted to certain fruits so it was a nightmare.Along with the GI doctor she thought he would do ok with wheat and soy when he was around 4 months so I added that back in and his poop still had a tiny amount of blood in it but he wasn't in pain and was doing great so she advised me to just go on the milk protein free diet from there on.After 2 weeks of dropping all the reactant foods Jake was like a whole new baby. So happy and finally started sleeping. So it was definitely worth it.It was so hard though never being able to eat out.. I never even dared eating at restaurants because they cook on grills and ovens that have often had butter on them so unless I trusted they completely cleaned the tops and burners before making my food.. I wouldn't eat out

aitirone

Ok first of all - this is so crazy. Everything you are saying is us. At about 8 days old is when Jordyn started. I mean SCREAMING is not even the word. It was more then that. As im sure you can imagine. She is just never happy unless she is sleeping. Which i might add, is only during the day and ONLY on our chest. The GI doctor said she def has reflux - but bc of the blood in her poop, he is diagnosing her right now with allergic colitis. Eating out is NOT happening. Friday we went to Outback. I ordered chicken, no butter, no seasoning, and it took OVER an hour to get bc they had to clean the grill and all the tools they cook with bc i told them i had a food allergy. Maybe Jordyn isnt getting better bc of some of the fruits im eating? Im going to mention that friday to my doctor. I am eating every fruit in the BOOK just bc thats all i can eat ya know. Did u lose alot of weight? I dont see how im even getting enough calories to breast feed eating this crap!

aitirone

also, did jake kick his legs when he cried? thats all she does. like she is in soooooooo much pain she is trying to push a train out of her bum!

YHFoxtrot

butting in... I was telling my mom about you and Jordyn last night Amy and she was saying her best friends Daughters two kids had the same thing and she was talking about how there is this really expensive formula that fixed it... wonder if it's the same neocate or whatever.... $600 a month is INSANITY! Gonna ask my mom to find out what worked for her friends kids kids for ya...

MrsVictoriaB

Yeah I dropped 30 pounds in 2 weeks and constantly worried about my supply. The pedi kept telling me I had to eat more buy it's so hard when there are so little options and you get sick of the same foods over and over once I could just eliminate milk protein, spices and citrusy fruits it got a lot better and unfortunately I gained weight then haha because I ate plain ground beef and plain pasta for dinners forever. You can find milk free bread, Sunbeam, and milk free pretty much everything at Whole Foods. I'd you go to their customer service desk and list your allergies they will print you a list of everything in the store you can eat, it's awesome! Jake would kick his legs up and arch his back and scream all the time

aitirone

Well i hope i can go to the no milk thing soon cause right now - for breakfast i had a banana and a strawberry smoothie ( literally, that and water = smoothie lol ) lunch - grilled chicken with chickpeas over lettuce with balsamic vinegar lol. dinner - yea, grilled chicken again LOL. THE ARCHING THE BACK! She does that as often as I breathe lol. Our poor babies!

MrsVictoriaB

I'm sure you can. Most babies with milk protein allergies tolerate the foods being brought back in (except the milk). Just keep up the good work and when you are ready, here is the menu I typed up for the girls on the bump (tons of us over there experiencing this) that my GI doc gave mehttp://community.thebump.com/cs/ks/user/default.aspx?UserName=milkproteindiet

aitirone

Thats amazing thank you. Is there a special board on the bump that talks about this? Do you post there often? I would love to join. BTW - do you live in south florida? I wonder if we go to the same pedi GI.

MrsVictoriaB

Oh we also have a group/check in with tips and support you can join http://mspimamas.blogspot.com/

MrsVictoriaB

Not a specific board, just the 0-6 and 6-12 board post about it here and thereI live in Orlando, I'm just from South FL

aitirone

This is more commen then i thought! This is all really helpful