Tuesday, December 6, 2011

Always Something

When the Snowflakes were just a few weeks old, Bubba developed colic. He would writhe and scream at all hours of the night, and we were ready to pull our hair out. The Ped told me that, in all likelihood, he had a milk protein sensitivity, which is very common in babies under one and usually something they outgrow, and that I should cut all dairy out of my diet and see if it made a difference. The relief was nearly immediate. Within a week's time, our house was colic free.

A few months later, Bubba developed a rash all over his body. We went to the Ped and blood work was ordered. It was an extremely scary time, as you may recall from my post "24 Hours In Hell". The bloodwork came back clear (THANK YOU JESUS!) and we were told that the rash could be a virus or could be eczema. It turned out to be the latter.

I have tried everything to bring the boy relief. Cut dairy, soy and wheat from my diet for 6 months. Used calendula cream, and Aquaphor, and dressed him in cotton. Made sure not to allow him to overheat. Worked to find a balance between bathing him too often to where he would dry out, and not often enough, where his skin would grow aggravated.

At his six month appointment, the Ped told me that I could try re-introducing dairy, wheat and soy into my diet. I did and the boy was fine. No reaction. He still had eczema but it wasn't any better or worse based on what I had eaten. Seeing this, the Ped told me last month that Bubba had probably outgrown his milk protein sensitivity, and I could try yogurt.

I gave it to both babies. Squeaks gobbled it up and was fine. Bubba ate two bites, and his eyes swelled shut. His body was immediately covered in hives. I called the Ped (it was after hours) and the nurse on call told me to give him Benedryl. I was shaking. And scared out of my mind. His reaction was getting worse by the minute. Thank God I repeated her instructions back to her, because she had said a half teaspoon, and I heard it as two teaspoons, and could have killed him. Always, and I mean ALWAYS, repeat back what they tell you in an emergency situation.

The next day I called an allergist and today we finally got in to be seen.

So here it is.

Bubba is severely, and I mean SEVERELY, allergic to dairy. The allergist told me all sorts of scary stuff today, like that if I drink a cup of coffee with milk, and then kiss him, that I could cause him to have a reaction. He wants me to introduce him to peanut butter and eggs immediately, because he is very likely to develop an allergy to these two things, given his history, if we wait. I guess the idea is to cut that allergy off at the pass, by exposing him to those things before he has an issue with them. He was tested for those and came back negative.

I was given a DVD about what to do in an emergency, and a "practice" epi-pen to show anyone who comes to watch the babies. Later today I will go to the pharmacy and have his prescription for the epi's filled.

I'm trying really, REALLY, hard not to be freaked out by this. I already live in a world where I worry (too much) about people touching the babies without washing their hands, for fear that they could get sick. Now, having to be a watchdog over who may or may not have touched dairy, and having to worry about whether they might touch or kiss him before washing, is, I am sure, just going to make me that much more neurotic.

It's hard enough as it is, when parenting after loss, to keep perceived threats in perspective. And I know that in the grand scheme of things, this ain't so bad. But it seems like there is always something keeping me on high alert. It would be nice to be able to relax. To just be.

But then I wonder-
once you've lost a child, is "just being" even possible?


  1. A great trick for eczema from a fellow mom, eucerin cream with hydrocortisone 1%. My son and nephew both have eczema and this works as well as any of the expensive prescriptions. As for the allergy, so sorry dearest! Allergies make life complicated but it is manageable. My child does not have severe allergies but I once read a newsletter from a parent alliance for children with severe allergies and asthma. Tons of support and resources support out there for you from parents in the same boat. You can do this!

  2. HUGS and more HUGS. Sadly, I think "just being" is not possible as a parent - with or without a loss. We are always worried for our children and, those of us who have lost one, are more scared and worried. I hope that you find a place of peace and comfort.

  3. How incredibly scary!!! I can only imagine how this makes you feel constantly on edge.

  4. I'm so sorry things are so hard. Praying for you and the little one.

  5. Goodness...
    I swear you are talking about someone on my husbands side of the family...they are allergic to just about everything but water. I think the most intense allergy is gluten for our family...my niece cant even have a trace of it or shes sent to the ER. just try and relax easier said than done but all you can do is take the advice from dr.s and teach bubba and those in his life about how serious the allergy is for him...the rest is chance. hugs-

  6. Oh, poor Bubba. I wish we did get to "just be" and I hope, that as you learn how to handle it all, it gets a little easier to manage.

  7. My son has the same reaction to peanuts. He was diagnosed at 14 months old. We once had to leave a Christening because the favors on the tables had peanuts in them and just smelling them caused his throat to start closing up. It is really hard and very scary but you will eventually get used to it and it will be like second nature. Hardest thing I've had to deal with is other peoples' ignorance. Downplaying his allergy like it's not actually LIFE THREATENING and giving me *brilliant* advice like "if you just keep giving it to hom he'll become immune." UGH. Hopeful thought for you though-my son was prescribed the Epi-pen at 14 months old, I have never had to use it and he is almost 16! I hope you never have to use Bubba's either. Hugs.

  8. I normally do not comment on your blog, but I read it everyday. I am so sorry that you have to deal with food allergies on top of everything. My daughter also had the same problem with cow's milk when she was a newborn and thankfully it has just become an intolerance and not an allergy. She is now 3 and I give her almond milk in place of cows milk. I hope that you never have to use the epi-pen either.

  9. I lived 26 years of my life, before I found out that I am deathly allergic to pine nuts, I have had every other kind of nut there is, go figure, anyway I did have an anaphylactic reaction the first time I had the pine nuts, the day we brought our first son home from the hospital,I had to be kept over night at the hospital had steroids, epi x 2 doses, benadryl round the clock. I'm not going to lie, life after finding out something people eat can kill you is scary. But your biggest ally is educating yourself and people who care or come in contact with your son, always carry an eppi with you, and never take for granted dairy isn't in something. READ READ READ labels and always ask if out dinning.

  10. I don't comment on here very often, cause I can't see to read the capcha, so I have to have help with that, but I've followed your blog for about a year or so.
    I know how difficult this can be. My friend's daughter has a severe allergy to soy and peanuts. I know how scary it has been and, still is, to her and her friends and family. It'll of course be even worse for you, since you know what it means to only be able to hold your daughter in your heart. Checking and rechecking the ingredients of everything before her daughter could eat it soon became second nature, but it has been hard with some of the girls's friends and their parents. They often don't want to realise that they can't give her candy, cookies or icecream, when the slightest trace of soy or peanuts is dangerous for her. All you can do is educate, educate and, educate people around you. It'll stick eventually and, when it doesn't you'll just not leave your Bubba alone with them. Don't worry, you'll be able to spot the ones who doesn't take it seriously... Like most things, it'll get easier to manage with time, but I also know that it probably doesn't help you one bit to hear that right now. I'm sorry this had to happen.

  11. I too follow but rarely post. I haven't had experience with food allergies (antibiotics, metal and mystery hives, yes, food, no) but do have a son with eczema. We found that Cetaphil soap was much more mild than even baby soap. He used it until he was 4. I think they now make a generic kind of Cetaphil so maybe it doesn't have to be so expensive. At 4 we "graduated" to baby soap for both hair and body. He just told me (at 7) he might be ready to move to kid shampoo. Every diaper change he got lathered up with Eucerine Calming Cream and we also used Caldesene powder in the diaper area. Once he was out of diapers we lotioned morning and night. The dermatologist recently recommended Vanicream which seems to be working well. We got it at her office so it comes in a giant tub with a pump. Good for a boy to be able to use himself (or a mom trying to wrangle a wiggly infant). Unfortunately, winter has arrived so we need to step up our vigilance. Grown ups tell us they had eczema and outgrew it. Not sure that will happen but we have found a good system to manage it. You will too. Prayers to your family. And as your post says, "It's always something." I say that on a regular basis around here.

  12. Hello again!

    I posted a while back about the eczema being related to a milk allergy, like my nephew. I just wanted to send my support. My nephew is exactly the same way. If he touches a milk product, he gets a reaction. I will say (if it helps) that while scary at first, it becomes manageable. My nephew's caretakers need to be informed, but with a little care, he experiences little change in his toddler life from other boys his age.

    You can do it!

    All my best wishes to you...


  13. P.S. If you don't already, learn to love Chinese food. No dairy in almost anything they make, and no contamination from cooking with things like butter. It isn't done!

  14. Oh my goodness, girl...it doesn't seem to ever be easy! What a thing to have weighing on your mind when there is already so much to be concerned about...and all that already comes with parenting after loss. Praying for him and for you...may the Lord cover you both with much grace and protection.

  15. P.P.S. (From Christine again) You might get him checked for an allergy to red meat. It's very very rare, but so is the severe milk protein allergy. My nephew was found to also have this. Not sure if they're related but you never know!

    Hugs to you and Bubba.

  16. Ah crap Kristin :( that is going to be so hard to police and such a worry on you, especially as the snowflakes get older and less under your watchful eye so to speak! I'm sure it will all work out (as sure as I can be), but it's certainly not a worry that you need, or that you deserve!!

    Hugs x

  17. "I guess the idea is to cut that allergy off at the pass, by exposing him to those things before he has an issue with them."

    Now see, my pediatrician told me the exact opposite. I delayed eggs until my daughter was 18 months, peanut butter we're just now doing & she's 31 months, wheat until she was a little over a year. No allergies, but she does have mild eczema.

    I love the Chinese Food suggestion one commenter advised. Just be careful about the MSG and other "natural ingredients" and flavor enhancers. Homemade stir fry is wonderful, and a Mediterranean diet is healthy for everyone!

    I'm a bit OCD myself, and I read up on everything regarding my daughter's health. I think part of this is just being a mom. Will we ever stop worrying and fussing over our babies? I doubt it.

  18. I'm so sorry, dear friend. With our living babies, it feels like we should just get a clear run.

  19. Poor guy :( Do they think over time still that he may become less sensitive to dairy? I hope so

  20. Hi again,

    Just wanted to pass along this link to a vegan (meaning dairy-free!) bakery in NYC. They deliver across the country AND have a cookbook. We love them because it helps my nephew feel included when we have an occasion that calls for cake. We especially love them because there's no possibility of cross contamination!


    They list all the ingredients on their website and they're super helpful if you ring them up.

    Hope this is helpful!

  21. Hi,
    I've been following your blog for a while (not very regularly) - I have a little one with severe allergies to milk, eggs and nuts - epipen, reaction on contact with skin, the works... Started off with eczema, then food allergies, then asthma and hayfever - typical "atopic march"
    It is scary and overwhelming at the beginning - but it gets easier. You'll learn to check labels, it will become second nature, you'll learn which products are safe, you'll learn to be 'allergy aware' in your cooking. I won't lie and say it doesn't change one's life - I never planned this for my child, but hey-ho.
    There is a charity called Anaphylaxis Campaign (www.anaphylaxis.org.uk) - can't praise them enough. They have overseas membership too. Lots of very good resources - well, I am the sort of a person to read all I can about something I have to deal with. Or maybe you have a similar organisation locally.
    Best wishes