Possible Severe Allergy-Needing Opinions

[MaddieMay]

My three month old has had a rash since a few days after birth.  It started on one part of her body and quickly spread.  It was diagnosed as ezcema.  The rash has worsened over time, even with changing from one topical medication to a stronger one.  Her entire body is covered.  Her pediatrician has ordered an allergy test.  I am dairy free and we've noticed no changes.  Her stools are mostly green now, mustard seeds, but they smell awful. (I nursed my son and he never had these.)  No blood that I can tell.

It just gets worse and worse.  She's in pain-she screams after feedings.  During a feeding last night, she pulled off towards the end and just wailed in pain.  Her eyes swell after feedings (and stay swollen for quite some time) and her respiration becomes very raspy and labored.  Some feedings are worse than others. Both DH and I are very concerned that one of these days she could possible stop breathing.

Her ped is very BF-friendly and is concerned, but he's very patient and feels we have time to wait for results, change diet, etc.  I feel as if we need to do something NOW before it's too late.  What would you do?  I'm a proud breastfeeding mom, but I am willing to put my pride aside and do what I need to do.  Obviously, I'd ultimately like to continue nursing but my daughter comes first.  Thoughts?

[SweetSilver]

Wow!  I do remember the screams after nursing, mucousy stools, etc. and it was a helpless feeling that the one food I could offer her was causing her such distress. (Nothing as severe as your experience).  

     At first I read your post, I noticed the comment on the rash, which sounded a lot like the cradle cap my daughter experienced.  It began on her forehead as hundreds of red bumps and migrated to her face, torso, everywhere.  It looked nothing like the cradle cap I'd seen on other babies, but astoundingly, her nurse said, treat her head and the rest will go away.  It did!

     Then I read the rest and that sounded intense and scary.

     I would definitely go on an elimination diet immediately...the big ones, tree nuts (even almonds), peanuts, soy, fish, shellfish, dairy are proteins that can easily pass into your milk.  The question i always wondered back then was....can a baby be allergic to breastmilk itself?  Do you use any creams, oils or lanolin on your nipples?  Almond and sesame oils can cause severe allergic reactions.  Herbs,or medications?  Sulfa and sulfites can cause severe and pretty immediate reactions in allergic adults.

     While still being respectful towards breastfeeding, could a test of organic formula dabbed on chin and lips help determine anything?  (Baby's One brand markets as "Toddler formula" actually has all the nutrients required for infant formula and doesn't have synthetic additives DHA and ARA that other organic formulas have.)  Of course, the allergy could be dairy or soy.  My point being that her reaction seems so severe, I would probably abandon nursing if that alone was the cause of the pain, if an allergen trigger in your diet cannot be found.  

I am afraid I can offer no truly helpful advice.  I hope others can be of help and I desperately want to hear updates.

[gracemamma]

I am so sorry to hear about this incredibly scary experience with your precious LO. Babies are so hard to figure out as it is and when severe allergies are on top of it all, it gets so much harder. I agree with you that it sounds like allergies is what your baby is experiencing and I also agree that waiting doesnt make sesnse when your Lo is suffering.

My DD also had allergies from the beginning that were very hard- no head to toe skin conditions then (we've had that more recently at 20 MO) but endless crying and arching back and crying post-nursing, tons of nightwaking, inability to sleep, mucusy and sometimes bloody poops etc.

If it were me I would go straight to elimination diet and get really simple with brown rice and other foods that are non-reactive.  I'm no expert in elimination diets so I would look elsewhere (allergy forum would be a good place to post this too!) but I found with my daughter that dairy, soy, wheat/gluten, peanuts, eggs, chocolate, banana, blueberries, strawberry and corn were all issues so they are out of both of our diets now. I started with diary and played around with broccoli, cabbage etc. that everyone recommends but elminating dairy, wheat, soy and corn helped my daughter to stop crying constantly, get some sleep, start to smile and enjoy herself, etc.

I've been reading Your Child's Food Allergies by Dr. Scott Sicherer which I believe is supposed to be the go to book for figuring out allergies. He talks about how studies show that  most breastmilk does contain the proteins of the foods the Moms eat so elminating the big allergens from your diet immediately could make a big difference.

Of course, I remember reading on kellymom.org that when you eliminate you need to figure 6 weeks from time of elmination to complete result because it takes up to 3 weeks to eliminate say dairy protein from your system and then another 3 for the baby to eliminate it. This said, we found differences within a few days often times.

I would also look at non-food allergens in the household and get things as hcemical-free as possible. Because your babies skin is so irritated, I would make sure ;laundry detergent is chemical and frangrance free and super mild, stay away from softeners, dryer sheets etc andlook at all skin, bath, shampoo etc. products that go on your babe, as well.  We use california baby and it is pretty allergen free.

I would check with Moms on the allergy forum about the tests. I think these aren't too accurate, especially for little ones but they have more info over there. I would also consider checking into specialists as well as alternative therapies to consider all options and help you feel like you are getting to the bottom of it all. Mama wisdom is big so trust your intuition if you need to get specialists involved.  I would hesitate on big time poking and prodding myself, but you and your DH can figure out what is necesary.

I wish you luck in figuring this out and strength and patience as you navigate your way through.  We are still figuring it all out with my 21 month old and its complicated. The first step is getting this reaction calmed and hopefully elimination diet can get this going. Good luck!

[Asiago]

Are you taking any prescription drugs, supplements or tea (for lactation)?I am just thinking about non-food items that could be passed through milk too.

Another thought- a stool sample for baby. Perhaps to check for bacterial infection, especially considering the oder you mentioned.

Did baby receive any formula at the hospital? Any antibiotics? Did you receive antibiotics while in labor?

All of these can change the development of normal gut flora in a newborn. An abnormal gut flora would make baby more susceptible to reactions.

There may be more than one issue going on with baby, perhaps it is all linked. I wish you and your baby the best, I hope you can figure out the problem soon. My thoughts are with you.

[Asiago]

I am sorry I never actually addressed your question. I would likely consider donor's milk to see if it could provide some relief for baby. I just do not know if you can specify diet from the donor.

Although formula may provide relief, provided you choose the right one for such a sensitve baby (hydrolosyzed I suppose of some sort), it would not offer the immune beneifts and components to heal the GI tract as well as provide live  immune cells that breastmilk does. Then I would likely go on the elimination diet and slowly introduce my milk back to baby to see how she reacts. I would probably also ask the ped if it would be safe to stop applying the topical medication until you figure out exactly what is going on. It is even possible that she may be allergic to the medication on top of all else that is going on. If her immune system is highly sensitized right now it may not take much to throw her body off balance.

Good luck.

[changingseasons]

With the symptoms you are describing, I would go on an elimination diet immediately, or else switch to a elemental formula. Swelling and trouble breathing should be taken very seriously.

At the very least, I would restrict ALL common allergens:
- dairy
- soy
- gluten
- eggs
- fish/shellfish
- nuts/tree nuts
- corn


Watch for hidden ingredients (I have many listed on my blog, under my user name). Things like: deli meat can contain dairy, some produce (especially non-organic) may have wax on it that contains dairy and/or corn, soy and corn are in virtually EVERY processed/packaged food, some packaged tea has soy, egg can be under many names in ingredient lists (albumin is one), etc. The easiest way to avoid hidden ingredients is to eat only whole foods- nothing packaged or processed. Even vitamins have corn and soy derivatives, and can bother babies that are really sensitive.

Keep a detailed food journal of everything you are ingesting- foods, drinks, vitamins, medicines, etc. Keep track of all symptoms as well, including changes in nursing, behavior, sleep, digestion, etc.


You can do a blood test for allergies as well, but they are really inaccurate at that age. Even so, I would see an allergist and talk to them about how to recognize and respond to an anaphylactic reaction.


As far as the eczema- it's a sign of what is going on inside her body. When you can figure out which foods she is reacting to, the eczema will most likely go away. I would stay away from topical steroids, as they can actually make the skin more prone to damage. Keep the eczema clean and dry. I used to keep a bottle of water with a few drops of tea tree oil and calendula tincture in it- those can keep the inflammation down and help it not to get infected.

Check out my blog if you can, and feel free to send me a message if you have any questions. Also- go check out the allergy forum.

[D_McG]

Originally Posted by changingseasons 

With the symptoms you are describing, I would go on an elimination diet immediately, or else switch to a elemental formula. Swelling and trouble breathing should be taken very seriously.

At the very least, I would restrict ALL common allergens:
- dairy
- soy
- gluten
- eggs
- fish/shellfish
- nuts/tree nuts
- corn


Watch for hidden ingredients (I have many listed on my blog, under my user name). Things like: deli meat can contain dairy, some produce (especially non-organic) may have wax on it that contains dairy and/or corn, soy and corn are in virtually EVERY processed/packaged food, some packaged tea has soy, egg can be under many names in ingredient lists (albumin is one), etc. The easiest way to avoid hidden ingredients is to eat only whole foods- nothing packaged or processed. Even vitamins have corn and soy derivatives, and can bother babies that are really sensitive.

Keep a detailed food journal of everything you are ingesting- foods, drinks, vitamins, medicines, etc. Keep track of all symptoms as well, including changes in nursing, behavior, sleep, digestion, etc.


You can do a blood test for allergies as well, but they are really inaccurate at that age. Even so, I would see an allergist and talk to them about how to recognize and respond to an anaphylactic reaction.


As far as the eczema- it's a sign of what is going on inside her body. When you can figure out which foods she is reacting to, the eczema will most likely go away. I would stay away from topical steroids, as they can actually make the skin more prone to damage. Keep the eczema clean and dry. I used to keep a bottle of water with a few drops of tea tree oil and calendula tincture in it- those can keep the inflammation down and help it not to get infected.

Check out my blog if you can, and feel free to send me a message if you have any questions. Also- go check out the allergy forum.

ITA with this. Actually I would eliminate the allergens AND switch to an elemental formula until it's cleared from your system (a few weeks? I think 3). Is your pedi really cool with the 'wait and see' approach when your child is having such severe reactions? I think you need a new doc, honestly. I hope you can get it figured out soon.

[changingseasons]

With the exception of gluten, most foods will be out of your system within a week. But usually when you cut out allergens, you'll see improvements immediately (if you got them *all* out)- like within a day or two.

[PatioGardener]

Originally Posted by changingseasons 

With the symptoms you are describing, I would go on an elimination diet immediately, or else switch to a elemental formula. Swelling and trouble breathing should be taken very seriously.

I think that's what I would do if I were ever in this situation. Oh Mama, what a horrible thing to be going through!

[SweetSilver]

If you plan to try out formula with the hopes of going back to nursing after the trial, I might try using a bag and tube system for the formula and pump your milk.  Use a commercial pump--you can rent them--and pump for a full 15 minutes as often as baby feeds.  (The hospital where my daughter was born wanted to supplement because she lost so much weight.  This is what we did, and the transition was seemless.  Some moms I spoke with that had hospital births gave bottles and didn't pump long enough and couldn't establish nursing.)  You might pump beforehand to eliminate the worry that your baby might get some breastmilk when you let down.  

Hopefully it won't come to this and an extensive and immediate elimination diet will get results quickly enough so you don't have to consider formula.

And definitely get a second opinion on both the rash and the allergies, either from another pediatrician, but probably from an pediatric allergist.  Usually children under two aren't tested because results are unreliable and the body is so small (even as an adult, allergy tests will wipe me out for the rest of the day or longer!) but the doc will surely be more familiar with a situation like yours that your ped.  This kind of intense reaction in a baby is not common enough that one could expect an ordinary practitioner to have direct experience with it.

[Katwoman]

Originally Posted by SweetSilver 
 

Usually children under two aren't tested because results are unreliable and the body is so small (even as an adult, allergy tests will wipe me out for the rest of the day or longer!) but the doc will surely be more familiar with a situation like yours that your ped. 

This really depends on where you live.  In Alaska they will patch test tiny babies.  I found patch testing very helpful because DD2 turned out to be allergic to turkey.  In the elimination diet advocated by Dr. Sears you take your food consumption down to turkey, sweet potatos and one other food.  After a period of time you add one food back into your diet at a time to make sure she doesn't react to it.  So while the elimination diet would have been helpful to us, it wouldn't have gotten all the foods out of her system.

Patch testing isn't the only answer, my girlfriend lives in Oregon and they don't patch test anyone.  An elimination diet is going to help you and her.  Switching to a formula isn't necessarily the answer nor will it automatically help.  If it is allergies, her system is compromised right now and adding new things into her diet could be hard on her system. 

I am not a doctor, nor an expert by any means, but I don't think babies can be allergic to your milk.  It's something - or a lot of somethings - in your milk.

A word of warning, if you patch test, be prepared to come away with more than one thing on the list that she's allergic too.  (Not saying it's a guarantee, just be prepared.)  Once their bodies get sick from actual allergens, it starts to have trouble with other foods too.  So sometimes you end up with a list of foods.  That list will get smaller or disappear over time as her body starts healing, once the allergens have been removed. 

Another word of warning, as you get the allergens out of your diet, she will improve, but it can take up to 6-8 weeks for her system to heal.  (The allergens can get trapped in the folds of her digestive tract and sluff off for a while before it all gets out of her.) 

I would ask the doctor about bendryl or an epi pen for someone her size.  You don't want to use them, but it would be better have the option.  Be gentle with yourself this is HARD and it can turn a world upside down.  (I didn't know how to cook until DD2 came into the world.)  But it can be done and if you need an allergen buddy PM me.  No one should go through this alone.

[SweetSilver]

Thanks for this info.  Hopefully the mama who started this thread will chime in soon?