Need to go dairy free for Z, it's overwhelming! And I do have a question.

Boizmom · December 2010

So Zane had his follow-up today with the GI Dr. To make an incredibly long story short, the red cheeks, diarrhea, increase in spitting up, gassy tummy, ear infections, chronic congestion and no weight gain are a result of worsening milk allergy. We thought it was getting better and that's why he was slowly weaned from Neocate back to "regular" formula. Supposedly, most children with milk allergies start to outgrown them by the time they are 12 months old. Zane is not one of those children. In the last 3 months he has gained less then half a pound. Today, naked, he weighs 18 lbs 12 ounces.

Immediately today he is off formula. The Dr wants to try soy milk first but warned me that 50% of children allergic to milk are allergic to soy as well. If he gets worse or if we don't see any improvement with his skin, digestive or anything else in a week, then we are to move him to rice milk. So basically it's a trial and error situation at this point.

He has an appointment in 4 weeks. If by then these issues he has have not cleared up then we will do an endoscopy. His Dr is concerned he has a gluten allergy as well. But we are dealing with one thing at a time right now.

Zane still has to take his medication for his reflux, which has gotten worse recently. We are hoping that the complete elimination of dairy will help reduce the reflux.

I guess I do have a question in all of this. I need help with dairy free everything for him. I started scouring the internet as soon as I got home and it is over whelming. His 1st birthday is coming up and his party is on the 9th. I have to find a dairy free cake recipe now. He is fine with eggs and presumably wheat. Do I just replace cow milk with soy or rice milk? A good friend of mine is making the birthday cake. It's a layered 3 tier cake and she is concerned about a cake that will be dense enough to decorate. (The top tier will be his smash cake so only that portion needs to be dairy free...including icing.) Oh, and he is severely allergic to oats too. Oats and milk. That's just odd to me. And incredibly hard to find foods that he can eat. It was already hard and painstaking to read labels looking for oats.

dieselmonkey · December 2010

Wow what a lot digest (no pun intended).

I just wanted to give you a dairy free cake option. I'm on phone so cant LIP go to allrecipes.com and search "crazy cake". It is a cake made during the depression when staples were scarce. No milk. No egg (I thnk). It sounds weird but it's really good very moist And it uses every EFFers fav...vinegar!

Boizmom · December 2010

dieselmonkey:
Wow what a lot digest (no pun intended).

I just wanted to give you a dairy free cake option. I'm on phone so cant LIP go to allrecipes.com and search "crazy cake". It is a cake made during the depression when staples were scarce. No milk. No egg (I thnk). It sounds weird but it's really good very moist And it uses every EFFers fav...vinegar!

Thanks for the cake rec. I'll check it out.

It is a lot to digest. We had reflux/GERD issues with my older two boys. Dylan is your average 6 year old boy now, no allergies or anything. Wyatt is still lactose sensitive but other wise healthy as a horse. Everything with Zane's allergies just breaks my heart. He's allergic to several medications as well, including the penicillin family. It's just been a difficult year trying to figure out why he's not growing.

CrunchOoEezyMama · December 2010

Dairy free has been A LOT easier than I imagined. Instead of thinking of replacements for milk/butter/cheese think in terms of what he can eat that doesn't have that stuff in it to start with. There are lots of foods and recipes without dairy in it. As far as baking goes, I'd use Coconut milk. I think stuff baked with Almond or Rice milk doesn't taste as good. There are vegan butters too that you use in place of butter in the baked goods. Soy is really rough. My son is sensitive to dairy but EVEN MORE sensitive to soy. Soy even makes my stomach hurt when I have it. Rice milk is basically sugar water. Why is the dr having you try those? Could he eat food sources high in fat and calcium instead of putting him on soy or rice milk? My DD was super light weight (she weighed 19 lbs from 9 months to 18 months) and the dr wasn't concerned with her drinking a "milk" so much as eating good foods. But as far as the bday cake goes get coconut milk and some fake butter

Boizmom · December 2010

CrunchOoEezyMama:
Dairy free has been A LOT easier than I imagined. Instead of thinking of replacements for milk/butter/cheese think in terms of what he can eat that doesn't have that stuff in it to start with. There are lots of foods and recipes without dairy in it. As far as baking goes, I'd use Coconut milk. I think stuff baked with Almond or Rice milk doesn't taste as good. There are vegan butters too that you use in place of butter in the baked goods. Soy is really rough. My son is sensitive to dairy but EVEN MORE sensitive to soy. Soy even makes my stomach hurt when I have it. Rice milk is basically sugar water. Why is the dr having you try those? Could he eat food sources high in fat and calcium instead of putting him on soy or rice milk? My DD was super light weight (she weighed 19 lbs from 9 months to 18 months) and the dr wasn't concerned with her drinking a "milk" so much as eating good foods. But as far as the bday cake goes get coconut milk and some fake butter

The reason why we're still focusing on a "milk" is because he has no appetite. Getting him to eat food is hit or miss most days. He usually won't finish his bottles either. This morning for example, he only took 6 ounces of his 8 ounce bottle. Most days he only takes 18 ounces total. We got the ok to start him on solids at 8 months with little success. There are things that he flat out refuses to eat. He doesn't care for meats. Most finger foods he won't eat so I have to feed it to him myself. (Think slimy/squishy, he won't touch it.) I started getting him the Sprout's packets with the turkey dinners and stuff. He likes those ok. He only ate half a pouch for lunch today and was done.

So his Dr wants to focus on his "milk" options since that seems to be only thing I can get in him most of the time. We are supposed to start seeing a nutritionist as well and possibly some type of therapy for the eating. I do encourage him to eat food, but he just does not want it. Overall his appetite is very low and also a concern.

Sapphyr · December 2010

We are dairy free here. I've used hemp milk successfully in cakes and almond milk but that could be a problem if there's a nut allergy.

kar5162 · December 2010

I agree with PP. Soy has the best protein levels of the standard milk alternatives with a decent amount of fat so is worth trying, but no good if he's intolerant to soy. Rice milk though is nothing but sugar. That won't help give him the fat he needs to grow and for brain development. I think coconut milk or hemp milk are far superior from a nutritional standpoint. Honestly though, if he's having trouble growing, I'm surprised he isn't having you move back to Neocate and staying on that for a few more months. ~19lbs isn't really that small for a year, but if his current growth rate isn't good, formula has a much more balanced level of fat, carbs and protein and the vitamins and minerals he'll need.

crackerjackprinter · December 2010

I loved rice milk when baking. And there are fake butters out there. Look for any marked "Pareve" or "Parve" - that's how you know there is no dairy or milk byproducts whatsoever.

But ditto the crazy cake recipe, if you can't find it I have one that is awesome. That's what DD ate at her 1st birthday and everyone else loved it too!

Genevieved · December 2010

I'm surprised that is your dr thinks he has a gluten allergy that they aren't trying to address this also. If it is celiac disease which mean they cannot eat gluten the symptoms can be very uncomfortable which could be one of the reasons why he doesn't feel like eating.

My mom has celiac disease and she feel so bad if she eats something she shouldn't.

It could also be one of the reasons for low weight gain as the body isn't able to absorb food the way it should.

Here is a website if you want to check our the symptoms.

https://digestive.niddk.nih.gov/ddiseases/pubs/celiac/#symptoms

I hope he is doing better soon.

nsees · December 2010

Ditto PP suggestions on subsitutions. Eli is allergic to milk products as well. It can be very trying at times but over the years we've gotten pretty used to it. We are able to substitute everything with soy though. I always use it for baking as well and have absolutely no issues...no one else ever knows the difference.

In addition to the celiac information, you did see blissfully caffeniated's journey with her DS, right? Sounds similar to yours is why I ask. I believe he was diagnosed with silent reflux if I remember correctly. That might be worth looking into as well if you haven't already.

Boizmom · December 2010

nsees:
Ditto PP suggestions on subsitutions. Eli is allergic to milk products as well. It can be very trying at times but over the years we've gotten pretty used to it. We are able to substitute everything with soy though. I always use it for baking as well and have absolutely no issues...no one else ever knows the difference.

In addition to the celiac information, you did see blissfully caffeniated's journey with her DS, right? Sounds similar to yours is why I ask. I believe he was diagnosed with silent reflux if I remember correctly. That might be worth looking into as well if you haven't already.

While I'm not brand spanking new to the board, I'm newish, but I don't recall coming across Bliss' story about her son.

When Zane was 3 months old I took him to the GI. At that point he was projectile vomiting every time he ate and he was breast fed at that point. The GI did the barium swallow and swallow study. It was determined that his pylorus was spasmodic and combined with GERD, that's why he was spitting up. At 4 months he went from 14 pounds to 10 pounds. Since then he has been on Nutramigen and Neocate. He has been on Bethanechol, Prevacid, Zantec, etc. He still spits up. It started getting better for a few months and recently it started getting worse. He is back to the chunky, half digested food and milk, acidic, several hours after he eats type of spitting up.

While doing research on milk allergies I came across that a lot of other things he's been experiencing are typical milk allergy symptoms: frequent ear infections, skin rashes, eczema, congestion and digestive issues (which I knew). Nothing I saw though indicates lack of weight gain. As his GI put it, when their stomach hurts from drinking milk, they don't want to eat and this is what he contributes the lack of appetite and slow/non existent weight gain to. Casually at the end of the appointment he threw out the possibility of a gluten allergy, but he "doesn't think that's it".

So I am just a big ball of emotions and confused right now. We just got home from a friends house and as I was getting Zane ready for bed and found two strawberry color rash spots on him. A three inch one on his stomach and a small one on the inside of his elbow. I gave him some benedryl hoping that will help and no more spots crop up. I don't even know where to start to try and figure out what caused it.

Thank you ladies for all the information. If you would, keep Zane in your thoughts. I think we're going to need all the happy thoughts we can get while we try and navigate through all of this.

Oh, and I contacted our Early Childhood Intervention program. We are going to set up an evaluation so that we can get Zane Nutrition Services.

DestinationWeddingKeyWest · December 2010

If you have a health food store nearby they should have several dairy free options. I am dairy free as well for the 2nd time...1st DD I was dairy free for 13 mos. This baby is even more sensitive and I can't eat whey or casein. It is a bit mroe challenging but worth it...and a good diet for me!

daisies916 · December 2010

(((hugs)))

Eliminating things from your diet can be tough and overwhelming in the beginning, but it will be so worth it when your LO feels better!! I'm GF and on a PCOS diet (not for weight loss- for blood sugar control). When I first went GF, I wondered what I could eat! But I slowly built up my confidence that I could sustain the diet successfully, and I am so better for it!

If you do decide to try GF, check out celiac.com. The people on the message boards are really amazing! Plus, a lot of people on the boards have multiple food allergies/intolerances, so they can help that way, too!

Good luck! I'll keep y'all in my prayers!!

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