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Juliana's pediatric GI appointment


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  #1  
January 19th, 2010, 07:13 PM
kellyanne's Avatar Mega Super Mommy
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We went to a consultation appointment for Juliana this morning. The hospital is about 1 1/2 hrs away, so DH took the day off to come along. The doc asked lots of history questions and then looked her over. He told us can't diagnose anything for certain without doing an endoscope, but they definitely aren't great for a baby so small (just doing an IV can be challenging). So, he asked if we would be okay with a more conservative approach (of course!) which would mean me eliminating dairy and soy from my diet (yikes!). Since it can take weeks for dairy to be out of my system, we are taking it a step further and putting her exclusively on Nutrimigen for about a week. I'll pump during that week and then slowly put her back on breastmilk and see what happens. If she stops spitting while on the formula, we know she has an allergy, which is probably a milk-protein allergy. For those of you unfamiliar with Nutrimigen, it is pretty much the most $ formula you can buy....it also STINKS! I think all formula stinks, but this one takes the cake. Juliana absolutely LOVES it though, which the doc thought may be encouraging....maybe it makes her feel better. As difficult as my new diet will be for me (I still can't quite wrap my head around it), I think the allergy may be the best-case scenario. Most babies start to outgrow it around 12-18 months. Thanks for all your thoughts and prayers.....I'll keep you posted on our progress. And if any of you know anything about a non-dairy and non-soy diet....I'll take any food suggestions you have.
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  #2  
January 20th, 2010, 08:52 AM
mom 2 haley & tyler's Avatar formerly mommy2haley17
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I'm glad they don't want to do any testing yet on her. I hope the diet helps. They tried Haley on that formula when she was little, and it was horrible. I hope it helps Juliana. I can't wait to see how she does. Please kup.
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  #3  
January 20th, 2010, 10:53 AM
Sabina's Avatar Mega Super Mommy
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Good luck with the new diet. I really hope it helps. You are amazing for doing that, it must be so hard to cut all that out.
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  #4  
January 20th, 2010, 11:04 AM
Pitridge's Avatar Platinum Supermommy
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Good luck with the diet. When Alex was about 4 months, they found a bit of blood in his stool and I was told to cut all dairy and soy from my diet. I couldn't do it for more than a day. So, I just want to tell you that I'll be here to support you through this.
I'm glad no testing in being done on Juliana, I hope that the formula helps. If it's a milk-protein allergy, are you still going to pump and give her that milk when she grows out of it? Maybe I am thinking too far into the future.
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  #5  
January 20th, 2010, 11:28 AM
kellyanne's Avatar Mega Super Mommy
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Patty - Yep...I'm pumping and freezing and hoping that if she has an allergy, she outgrows it in time to use the pumped milk.

It will definitely be hard, but it is helping my motivation to know that the alternatives are $200/month formula or putting her under for an endoscope. We should know if it is working in 2 weeks or so. I'm secretly hoping I'll get the added bonus of losing weight from the experience . Replacing ice cream with carrot sticks HAS to do something, right?
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  #6  
January 20th, 2010, 01:57 PM
Mommy2Makenna's Avatar Mega Super Mommy
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Kelly,

I was trying to do some research for you. Here are some web sites to check out...

Soy, Gluten and Dairy Free Menu Planner | Heart of Cooking

enjoy life foods - our foods : gluten-free, soy-free, dairy-free, nut-free and casein-free foods
(they even have CHOCOLATE without dairy)

Dairy-free soy-free “butter” is here! | Sure Foods Living - gluten free and allergen free living

Dairy Free Food, Products & Diet - Non Dairy, Gluten & Casein Free Food

You also might be able to find more if you search by allergy friendly diets. (Even though YOU are not allergic).

Good luck, Kelly! If you find foods you want, but can't get them in your area, let me know and I'd be happy to ship you some stuff. We have lots of resources here in the Orlando area.
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  #7  
January 20th, 2010, 09:00 PM
kellyanne's Avatar Mega Super Mommy
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Thanks Sacha! I don't live in the best area for this type of eating, but we do have a Food Co-op that may have some things. I think I'll go tomorrow evening.

I was just starting to read your post when the phone rang and I walked away. When I returned, my husband had sat down at the computer and read your post. He said " Wow, Sacha seems nice!" :

Juliana has yet to spit-up today....but she is fussy. Hopefully the formula isn't screwing her up in some other way.
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  #8  
January 21st, 2010, 04:55 AM
Mommy2Makenna's Avatar Mega Super Mommy
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Kelly,

Wow, she used to spit up all the time, didn't she? I'm glad she's not spitting up, but I'm sad to hear she is fussy. I know when we changed Makenna's formula, she frequently became fussy -- I presumed it to be gas/constipation type issues. I hope it is a temporary thing for Ana.

Aw, your dh is sweet. Seriously, my dh and I go to Whole Foods frequently and many of the foods I was seeing are offered there. I wouldn't mind at all sending you some stuff.

I know this diet will be hard, but I know you can do it.
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  #9  
January 22nd, 2010, 06:16 AM
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((((HUGS))))
We are going through something similar with Norah she has started throwing up after nursing(three times already), congested and coughing(they might schedule a barum upper gi next week). I have cut out dairy which is so hard. Jon was on Alemintum that stuff is horrible the smell was awful.
I hope Julianna starts feeling better soon. Did they rule out Reflux/
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  #10  
January 22nd, 2010, 07:04 AM
kellyanne's Avatar Mega Super Mommy
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Tina,
I'm sorry to hear little Norah is going through it too. Is she gaining weight normally? I think that if they are doing the barium, they may be making sure that she doesn't have some type of blockage. Does she projectile vomit? If so, they probably want to rule out pyloric stenosis. Juliana has spit since day one...everyday, all day....not just after meals. They first told me it was just a laundry inconvenience so long as she was gaining and happy. Then when she started spitting blood they changed their tune, called it GERD, and put her on prevacid. The whole time I was told not to worry about cutting dairy because milk allergy USUALLY involves bloody stool as well. Right now the GI is simply trying this in hopes of avoiding a more invasive endoscopy. I'm cutting soy as well (which is actually harder....soy is in EVERYTHING) because babies with milk allergy often have soy sensitivity as well. But it is looking hopeful, since she isn't spitting. I sure hope you get it figured out faster than we have .
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  #11  
January 22nd, 2010, 07:24 AM
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She's gaining great up to 13 pounds. Jon had the same thing he had the barum to make sure it was reflux he was on zantac and reglan from 2 months old. Norah just started once we went to nothing but breastmilk she didn't even spit up when she was on formula and breastmilk. The only time she doesn't projectile is when I used expressed milk and add cereal to it.

It's horrible when there's not much you can do. I have accepted that she might have to go back on Similac Sensitive for some or even all of her feedings.
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  #12  
January 23rd, 2010, 10:13 PM
ShannonMVT's Avatar Platinum Supermommy
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I'm so sorry I haven't been around to see this sooner! If you remember, we've had problems with Matthew. He used to spit up a ton and then he started getting trace (not visible) blood in his stool plus mucus in his stool and also he has bad eczema. We saw the GI specialist earlier this month and he wanted Matthew off the Prevacid. I was nervous about it, b/c when we tried taking him off of it at 6 months was when he spit up blood. But he's been off it several weeks now and so far, so good. He's spitting up a lot less just in the past month or so.
I've been off dairy for months, other than occassional splurges. I've also been off any nuts since I noticed his gas and tummy upsets were worse with that.

The GI doc wanted me to cut out dairy, soy and eggs since those are the top offenders and have Matthew see an allergist. They can do a RAST blood test to see if he has allergies. I actually did a soy trial and drank a bunch of soy milk and Matthew did not get any worse so I don't think soy is a problem, so I'm eating that. You are right, it's in EVERYTHING. But I think things like soy lecithin are not as bad as the actual soy protein. Even though I've eaten some cheese lately too, the mucus in the stool seems to be gone so I'm hoping Matthew is outgrowing his issues, though his eczema is still bad.

As far as food replacements...for milk I do rice milk or hemp milk. I know hemp milk sounds weird but it has a nutty flavor and I use it since I can't do almond milk (cut out all nuts). For butter I use that Earth Balance that was already linked. Whole Foods has an egg replacer made by EnerG, you can use it for baking and so forth. I got fake chocolate (carob chips). Did you find actual dairy free chocolate? Doesn't chocolate always have milk in it? Or maybe I'm just confused.

Sorry for the novel, it's nice to compare notes though. I hope Juliania's reflux gets better and she doesn't have to be scoped!
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  #13  
January 24th, 2010, 01:03 PM
kellyanne's Avatar Mega Super Mommy
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Shannon - I was hoping you'd come back since you have so much experience with this stuff. Glad to hear Matthew is growing out of it. Our specialist said most of the babies he treats grow out of it by 12-18 months. We did put Ana directly onto Nutramigen formula for the first few days while I cut dairy. She stopped spitting immediately. I started nursing her already again, though, because I don't want to lose milk supply. She is spitting a little, but still much less. Hopefully she is just dairy sensitive and I can ultimately add in small amounts of soy too. I've never cut nuts or eggs....but she also doesn't often get fussy or gassy. I DID find dairy-free semi-sweet chocolate chips. They taste exactly like the real thing. They are in a yellow package and say dairy, soy, nut, gluten free on the front. In the corner there is a red circle that says "Enjoy Life"...maybe that is the brand.
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  #14  
January 25th, 2010, 07:42 AM
IAMommy's Avatar Platinum Supermommy
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Kelly - I'm very sorry, I thought I had responded to this before.

I am sorry Ana is going through all of this, but I am very glad to hear that putting her on formula seemed to help, at least that gives you a little reasurance about WHAT it is that could be causing her issues. You are a very strong mama for cutting out soy and milk! Hopefully as the soy and milk exit your system, her body will repond well to that too and her spitting will stop. Please KUP on how she is doing and how you are doing with your new diet.
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  #15  
January 25th, 2010, 07:54 AM
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aww poor Ana...i don't have any advice, but I sure hope they figure out what's causing her spitting so she can feel better soon. If the diet change can fix it, that's definitely better than a $200 month supplement (wow that's expensive!) or her needing to go through the scoping procedure. I'll keep my fingers crossed that you see some quick improvement in Ana with the new diet so you can avoid the endoscope...
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  #16  
January 26th, 2010, 01:53 AM
victorialv's Avatar Mega Super Mommy
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Kelly, I wish you the best of luck with the diet, and I really hope that you all are able to get this figured out quickly. I had a little trouble when Hayden was very small, and it was very difficult on us. So, I can only imagine how difficult this must be for you and Juliana. Many, many hugs my dear.
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