A little update on our current drama and struggle. I have put a little bit of this on Facebook and various “mommy” sites I am on. But I have not really put it all out in one place well enough. I need to put it all in one place so I can go back later and look at it. Some times for me going back to digest what it was like in the moment is important. But also I know one day this will all be something to just roll my eyes at, I hope anyway!
JK was exclusively breastfed during her fist months. She lost weight in the hospital, but only took about 3 oz of hypoallergenic formula total over two days before my milk was fully in and she had a more than enough to eat. She gained really well the first two months. At 4 months we went back for a checkup and she had fallen on the growth chart from the 50th percentile to the 25th percentile. She was nursing almost every hour round the clock and refusing to take a bottle. The doctor and I decided that rather than wasting my precious milk I had very little time to pump anyway we would use formula to try to get her taking a bottle. She encouraged me to use milk based because up to that point we had no indication that there was a problem with milk. Unlike BK her reflux was well controlled, she was not a projectile vomiter and her poops looked like textbook breastfed baby poop. We got her to the point that she would latch on to the bottle and take about 2 sips, then scream like she was on fire. at almost 5 months old we saw the pediatrician again for something unrelated and she asked how things were going with JK and the bottle. I think at this point I was looking rough and JK’s weight was still slowing down. She suggested that for everyone’s sanity we mix formula and cereal and see if she would take it via spoon. JK loved it, she sucked it down. However by about the third introduction of this mix of milk based formula and oatmeal we had a horrible night of vomiting. The pediatrician checked her out and she was constipated so we administered baby laxatives and got her cleared out, about 3 days later we tried the milk based formula and oatmeal again. Same reaction, profuse vomiting in the middle of the night (about 3 to 5 hours post ingestion). I was discouraged. That was the beginning of us avoiding oat and milk. She eventually did start taking a bottle. I offered the hypoallergenic formula and she took to it like a duck to water. I had my break, one bottle a day for someone else to feed. Her weight seemed to pick up and by this point she was almost 6 months anyway so I started introducing fruits and veggies. She did well with all but carrot, but my other two had struggled with carrot so I was good to put it on hold for a couple of months. Eventually we did introduce rice, wheat, barley and some other grains. Her last oat trial at 11 months resulted in a delayed vomiting reaction. She at that point had also had a soy reaction and so at her 12 month visit we were referred to allergy. In preparation I offered a cookie with baked egg two days prior to our allergy appointment. More vomiting, but like the soy this was almost immediate.
Our first allergy appointment with JK was kind of a shocker. She had skin reactions to soy, egg, peanut, walnut, pecan, cats and dust mites. Well out the window went our plans for a RagaMuffin Kitten. I still can’t talk about Genevieve without tearing up a little. Yes I was going to name my expensive cat Genevieve. Anyway, I took JK for blood work and waited to hear how bad her allergies really were. I cleared ALL peanut out of my house. I was terrified JK would have a contact reaction to someone accidentally not cleaning up well enough. Fortunately my kids eat SunButter just as well as Peanut Butter, so TD who eats a “butter sandwich” daily didn’t even notice the change. I went into our follow-up with the allergist ready to face the words “epi pen” and “anaphylactic shock” I was terrified but knew I could do it. I can stay calm while my then toddler daughter would lay on the ground having a seizure, I could call 911 and administer rescue medication rectally. I could handle this. I was a tested emergency management mom! The day arrived and JK and I set off for the appointment. I prayed in the car on the way there for the strength not to fall apart in the office. I am fine in the moment of crisis but the worry of the inevitable “when will it hit” sends me into a tail spin. The doctor came in and he said “all her blood work was normal, she does not have food allergies” I was in shock! WHAT? Two weeks ago you sent me out of here with a list of foods she skin tested positive for?! Apparently he now thinks her skin test was “miss read” by his office staff? yea I am confused. The reactions were “barely positive” and the blood work shows no allergy.
I went home and digested this info for about 24 hours and then immediately called our pediatrician and said “HELP” what on earth am I supposed to do with this kid? Her feeling was that usually a positive skin test was taken more seriously than blood work in an infant this young. She wants to see the report before we decide what our next step is. She said definitely avoid the eggs, soy and nuts since we have seen reaction to egg and soy and the nuts are typically not considered safe at this age anyway. The negative oat and milk are also perplexing. We will be avoiding those as well for now. But who knows a milk trial could be in our future.
So that’s where we stand with JK and her allergies or intolerances. We stand in one muddy puddle with a pan and some prayer for gold, I mean answers.