Advice/stories wanted. Infant allergies

[shoeless]

DD (9 months) had the allergy blood test done Friday and it came back with allergies to egg, cow milk, wheat, oat, avocado, nuts (all- but peanuts was really bad), and soy. The only thing she tested for that she wasn’t allergic to is fish. We meet with a specialist next week but if anyone has advice, links, things I should ask about, they out grew them stories, it’s not that bad stories I’ll take it. I’m feeling very overwhelmed.

Also, Anyone know of any good meal plans that might eliminate most of these foods? I need to decide if I want to continue to nurse and eliminate everything or not.

Word wall backstory for those interested: I’ve always suspected DD had allergies. As a newborn she had horrible colic and really bad smelling gas and poops. She was exclusively breastfed and after 6 weeks of hell I eliminated almost all dairy from my diet (despite my Dr saying it wouldn’t matter). It helped on the gas/poop and colic side of things. (Occasionally I give in to a piece of pizza and that seems to be ok). When starting solids she had violent vomiting reactions to oats and avocado. She has also had decently bad, constant eczema that the Dr also thought wasn’t allergies. I couldn’t find a pattern with my diet and her flare ups (I know why now - I was almost always eating one of her allergens). The Dr really wasn’t too keen to do the test since DD never had the classic blood in the stool. I’m glad I insisted and even if I felt foolish at the time for following my instincts. Of course I obviously wish I had been wrong

[dreamcrisp1]

Are they going to do food challenges? The way I understand allergy blood testing is just because the level is high doesn’t necessarily always confirm a true allergy. My allergist said sometimes a level is low but that child can be severely allergic and sometimes high and not allergic. We had a high level of peanuts and eggs though and both of those were confirmed with reactions. Also I’ve been told that only proteins like cow’s milk and egg get into breastmilk.

8.5 months here so no anecdotal experiences but I posted a thread on this a month or so ago and got great responses. We have confirmed allergies to dairy, eggs, and peanuts (anaphylactic based on responses). They didn’t have enough blood to test other allergens so we’re going tomorrow to test the rest. He’s also reacted to spelt so I also think that’s an allergy. It sucks. I get it. But I’ve been reading and it seems like many kids outgrow cow’s milk and eggs.

[Poppy]

Oh wow, that is a lot to take in. Hugs.

First, I would definitely avoid avocado and oats. I hope they prescribed you epinephrine and Benadryl and told you how/when to administer.

Our son had reactions to milk, egg, and peanuts in food. The egg and milk reactions were mild (rash) but the peanut one was scary and prompted the allergist consult. He tested positive on a skin prick test for all those and nothing else. They did not do a blood test so I don't know a whole lot about that. I know the skin tests aren't perfectly correlated with food reactions. Excema is highly correlated with allergies.

It was really tough to adjust and we had to find a subset of food that worked for him. Once we had some known good foods, we were able to get into a good groove. We brought food for him everywhere. He was very used to going to bday parties and not eating the food or cake, to eating his own meal at daycare, to not sharing food with friends. That bothered me more than him. Haha.

If you have specific questions as you navigate this, feel free to post or pm. Best wishes.

[Poppy]

And if it were me, I would look into an elimination diet where you slowly introduce foods. It may be that despite the positives, some things are ok in your diet or even your child's.

[gretchenindisguise]

I was allergic to more than that. I outgrew a lot, but not all. I've lived a very fulfilled life even if I can't eat quite a bit others can.

My oldest had a very similar list. By 2 all that remained was fish and very mild to walnuts.

My youngest also had issues with a lot as a baby. All that remains is sunflower seed butter.

I'm the only oddball of the 3 of us that still has quite a few allergies.

It's harder sometimes as the parent than it is for the kid is my experience, having lived both.

Also - peanut treatment is just coming on line. As your babe gets older, definitely look into it. I did a clinical trial for myself and the treatment is now fda approved. I'd do it in a heartbeat for my kids if they had peanut allergies.

[Poppy]

The above reminded me - my son can now eat both milk and eggs! He was able to do eggs in baked goods around 3 and milk and scrambled eggs around 4. He is still allergic to peanuts, but life for us is soooo much easier now.

Outgrowing allergies is quite common, so as difficult as this is now, there is hope!

[abs]

I'm sorry. Food allergies are extremely overwhelming!!

DD was diagnosed with a dairy and soy allergy when was probably around 6 months? 9 months? I can't remember anymore. She was also sensitive to oats. I do remember feeling very overwhelmed though when trying to figure out what she could and couldn't eat. The good news is once those foods were cut out she was a MUCH happier baby and it made the meal planning and research worth it.

By the time she turned 3 or 4 she outgrew her allergies. She (9.5 now) still has problems with dairy and has to limit it. I think she is probably lactose intolerant. She isn't allergic though and can enjoy the occasional scoop of ice cream or anything with dairy cooked into it. She stays away from cheese and milk and it doesn't bother her at all to do so. It definitely gets better. Hang in there!

[somersault72]

I'm so sorry! One of my close friend's youngest son had several food allegies (and some environmental) as a baby. I think he outgrew almost all of them (if not all) by age 5. One thing that impressed me was how young her son was and he still knew pretty early on (by age 2) what foods he could or could not have. Obviously his parents avoided things, but it was hugely helpful that he also knew. Big hugs to you!

[starryfish]

my daughter was highly allergic to dairy as an infant. When i was BFing I couldnt even have butter, it would set her off.

She outgrew it completely by 13m. Also, I stopped BFing at 7.5 months (figured out the allergy at 6weeks old). It was REALLY hard to be 100% compliant with her allergy and I just missed pizza and ice cream. I tried the non dairy formulas but they didnt work and ending up on an RX amino acid based formula that worked for her. It was $$$$ but my insurance paid for 70% of it. It was neocate I think. 

I hope your LO outgrows them!

[jg183]

food allergies are so scary. my son was first diagnosed at 8months (he's 8 years old now)
Hopefully the allergist will do further testing than blood testing which often has false positives. Our original blood testing had us avoid wheat, eggs, all nuts. My son's scratch tests had him allergic to eggs and nuts. Food challenges had us anaphylactic allergies diagnosed to eggs (whites and yolks) and peanuts but challenged out of the other nuts.

I hope your allergist has answers for you soon. Good luck, and be kind to yourself, it is a very hard time of parenting

[tacom]

That is a lot to take in! I’m sorry.

Are you seeing / will you see an allergist to help you to interpret the results of the blood testing?

Since allergy testing is rarely black and white, our pediatric allergist (through our local children’s hospital) tested my son very narrowly - only in the context of confirmatory testing after severe reaction or ige rule-out prior to initial food challenge (and this was only for 1-2 high risk foods that weren’t previously in his diet). Everything was done in small, incremental steps with a clear plan for the future, so I never really had to sit with a lot of info at once (except for the initial Fpies dx)

[jaylea]

My daughter had extensive food allergies as an infant. Head to toe eczema, screaming, clenched fists, constant vomiting, and bloody/mucous filled diapers. It was awful.

I did a full stripped-down diet for a while but it wasn’t sustainable for us. I had to initially put her in neocate while I pumped to keep up my supply for two weeks (to allow her allergic colitis to heal), and she was a different baby. Then I started nursing again, and it all fell apart again. We ended up doing neocate/elecare from that point on. At 13 she now has no known allergies.

My understanding is the same as others’ - that presence in the blood does not indicate she won’t be able to tolerate those foods. A full elimination diet and tracking reactions might help you to get a better gauge on what you could do.

What about meeting with a dietician?

[shoeless]

May 21, 2020 19:37:03 GMT -5 jg183 said:

food allergies are so scary. my son was first diagnosed at 8months (he's 8 years old now)
Hopefully the allergist will do further testing than blood testing which often has false positives. Our original blood testing had us avoid wheat, eggs, all nuts. My son's scratch tests had him allergic to eggs and nuts. Food challenges had us anaphylactic allergies diagnosed to eggs (whites and yolks) and peanuts but challenged out of the other nuts.

I hope your allergist has answers for you soon. Good luck, and be kind to yourself, it is a very hard time of parenting

She was a class 4-6 on most allergies so I'm not sure what to think but I am so hoping this is true!

[shoeless]

May 22, 2020 8:08:46 GMT -5 jaylea said:

My daughter had extensive food allergies as an infant. Head to toe eczema, screaming, clenched fists, constant vomiting, and bloody/mucous filled diapers. It was awful.

I did a full stripped-down diet for a while but it wasn’t sustainable for us. I had to initially put her in neocate while I pumped to keep up my supply for two weeks (to allow her allergic colitis to heal), and she was a different baby. Then I started nursing again, and it all fell apart again. We ended up doing neocate/elecare from that point on. At 13 she now has no known allergies.

My understanding is the same as others’ - that presence in the blood does not indicate she won’t be able to tolerate those foods. A full elimination diet and tracking reactions might help you to get a better gauge on what you could do.

What about meeting with a dietician?

DD has never had blood in her poop so that's why the Dr assumed and kept telling me that it would be very unlikely for DD to have allergies.  Despite multiple extreme puking episodes and never ending eczema horrible colic that went away when I eliminated dairy. 

I am very concerned about how sustainable a stripped down diet will be for me.  On one hand, it could be motivation to lose the last few pounds but on the other hand, this requires a lot of cooking on my part with no room for cheats.

The pedi suggested a dietician if the allergist didn't give us enough information.  She thought the allergist would but yes a dietician is on the table and if these allergies hold will likely be necessary just so I can figure out how to give DD variety and not the same 7 foods since I doubt DD will be interested in a lot of spicy coconut based curries that I'll be living on.

[shoeless]

May 21, 2020 23:12:34 GMT -5 @hiphopanonymous said:

Between Celiac and food allergies we have to avoid most of the foods on your list. For finding recipes, I look for things labeled Paleo, as those at least don't contain the grains, legumes, and dairy. From there it's easier to find egg- and nut-free. I highly recommend Danielle Walker and Michelle Tam for cookbooks/blog recipes.

For storebought packaged items, Enjoy Life and Kinnikinnick both have some options. Not all of their things are safe, like Enjoy Life stuff uses oats, and some of the Kinnikinnick has "may contain egg", but worth looking at.

Re: your daughter's rash, ask to see a dermatologist to rule out dermatitis herpetaformis (a Celiac rash). My kid had it as an infant and it was misdiagnosed as eczema for years.

We have been seeing a dermatologist and he never mentioned dermatitia herpataformis but I will ask about it at the next appointment, thank you!  Also thank you for the blogger recipe suggestions

[shoeless]

May 20, 2020 13:13:58 GMT -5 starryfish said:

my daughter was highly allergic to dairy as an infant. When i was BFing I couldnt even have butter, it would set her off.

She outgrew it completely by 13m. Also, I stopped BFing at 7.5 months (figured out the allergy at 6weeks old). It was REALLY hard to be 100% compliant with her allergy and I just missed pizza and ice cream. I tried the non dairy formulas but they didnt work and ending up on an RX amino acid based formula that worked for her. It was $$$$ but my insurance paid for 70% of it. It was neocate I think. 

I hope your LO outgrows them!

It interesting you say this because DD gets one overnight bottle of a few ounces of Alimentum and every morning without fail, no matter how many prune purees she ate that day, she has constipation.  I has assumed since alimentum was hypoallergic it couldn't be the cause, now I am wondering if the constipation is a result of that formula

[starryfish]

May 22, 2020 9:07:47 GMT -5 shoeless said:

May 20, 2020 13:13:58 GMT -5 starryfish said:

my daughter was highly allergic to dairy as an infant. When i was BFing I couldnt even have butter, it would set her off.

She outgrew it completely by 13m. Also, I stopped BFing at 7.5 months (figured out the allergy at 6weeks old). It was REALLY hard to be 100% compliant with her allergy and I just missed pizza and ice cream. I tried the non dairy formulas but they didnt work and ending up on an RX amino acid based formula that worked for her. It was $$$$ but my insurance paid for 70% of it. It was neocate I think. 

I hope your LO outgrows them!

It interesting you say this because DD gets one overnight bottle of a few ounces of Alimentum and every morning without fail, no matter how many prune purees she ate that day, she has constipation.  I has assumed since alimentum was hypoallergic it couldn't be the cause, now I am wondering if the constipation is a result of that formula

It made my DD really fussy still, same with the other brand, nutramagen? Her pedi wrote us a RX for the neocate and it ended up being cheaper than the Alimentum bc insurance paid so much of it. If insurance doesnt pay for it, then it is like $1k a month. Neocate is specifically mentioned in my insurance plan as covered, so try searching your insurance plan for it. 

[boiler717]

oops! Wrong thread
Let me come back for allergy stuff. We just got a FPIES diagnosis at 4.5y

[al dente]

I don’t have experience with allergies, but @kids.eat.in.color on Instagram has an awesome meal plan, and it has a version that is top 8 allergy free. I use the regular meal plan and love it. I think it’s on sale for quarantine right now for like $20? I’m no sure I bought it when it first came out.