Well we still don't really have an answer for Devyn. Although we might. Let me explain.
I took Devyn to the allergist this morning. We went to Dr. Wolf, Noah's allergist, to see what he thought about the possibility of a milk allergy. Based on her symptoms he thought it was certainly possible. We talked a lot and he said that he would like to see a scratch test done on her. We did the test which puts a little bit of the allergen under her skin to see how it reacts to different triggers. They tested her for enviromental allergies (trees, pets, etc) and milk and peanut. She screamed from the itching and in the end showed that she had no allergies. Huh? No allergies?!? So, we were pretty much back to square one.
The other thing we discussed, which he feels is probably the case, is that she may be lactose intolerant. It is extremely rare for a baby to be born with lactose intolerance. He mentioned it before, but because it's so rare felt like that was less of a possibility. All of her symptoms do point to it.
He sent us down for a blood test to rule out milk allergy and we'll have to wait for the results of that. For now we assume it's lactose intolerance. He was fairly concerned about her very slow weight gain. She's at 13lbs 9oz. She has gained a bit of weight, but feels like it is still too slow. She was 8lb 11oz at birth and then hit a little over 12 lbs at 3 months and has had a hard time gaining since then. He suggested we talk to our pediatrician about seeing a GI. We saw one with Aiden for reflux as a baby, so I know who we'll go to if we need to. He said we can keep an eye on the weight gain and talk to her about it at her 9 month visit. That's still a month and a half away. So, I'm not really sure what we'll do.
I'm not sure if I should feel happy about this or not. On one hand I'm happy it's not an allergy like Noah's where I'll have to carry a second set of epipens. On the other hand we'll have to change how we eat, yet again, when she starts eating with us. I already am dairy free, but I'll have to cook dairy free for her and think about a whole new set of dietary restrictions. I'm relieved that we may finally have an answers, but I'm left thinking, "Now what?". I guess it's time to start learning..again. It's a good thing I enjoy learning so much! If anyone has had a baby with lactose intolerance I would love some guidance!
Tuesday, February 25, 2014
Wednesday, February 19, 2014
Allergy Check-Up
Yesterday was Noah's 6 month allergy check-up. Our allergist was pleasantly surprised that we have made it a full year without another reaction. That was a great reminder of just how serious this year. Being a parent of a child with food allergies is so incredibly overwhelming. We have been through some really stressful situations that have left me paralyzed and wondering how to move forward. This often leaves me wondering when we will have to jump to action and use that Epipen that we dread having to use. Knowing when he is having a reaction can be confusing and incredibly scary. We thought he was having a reaction about a month ago. He was coughing so hard that he was throwing up all over the hallway. My hands were shaking, my chest felt tight and I just wanted to cry. I wanted someone to tell me what to do. The reality is that we have to decide what to do. As the parent these momentous decisions are on us. Thankfully he was fine and just needed to have a drink and use his nebulizer. He was fine. It just reminds me that we need to be ready for that moment when it's not okay.
We talked about many things with our allergist, including snoring. He doesn't snore loud, but enough that he asked us to make a video of him sleeping to be sure he doesn't stop breathing when he's sleeping. Apnea is very serious, so we need to rule it out. I really think he's fine, but we'll make the video to be sure.
We also talked about the fact that he breaks out in hives on his face when he eats cinnamon. He agreed that it's probably a "contact allergy" and the cinnamon is just irritating his skin. The hives don't spread and he has no other symptoms, so it's likely not a problem. We'll still avoid giving it to him, but we can all eat it without worrying.
When we talked about the fact that we haven't gone to children's museums or stadiums out of fear of him coming in contact with peanuts he agreed that we made the right decision. He said it's not worth the risk. Noah's allergy is considered fatal, so we should never take a chance. It's heartbreaking to know that he'll miss out on things, but I want him to know that his safety is more important than any experience or event. He'll just have to learn that everyone is different and deals with difficult situations. His situation may be difficult at times, but he will still be able to live a life full of great experiences.
I also brought up the issues we've had with Devyn and reminded him that she came with to Noah's last appointment. She was only 7 weeks old and already having a lot of gastrointestinal issues and had a rash. We suspected then that it was dairy. She still can't handle if I have any kind of cheese or milk. He agreed that is sounds like a milk allergy, although he mentioned lactose intolerance, because of the rash. He suspects milk allergy because of the rash more than anything. He suggested bringing her in so we could talk about it and do the blood test. Her appointment is nexty Tuesday. The best part about the visit is that her inital visit is scheduled for an hour allowing for as much discussion as possible. A typical visit is scheduled for 30 minutes. What a blessing to have that much time with an expert on such a confusing subject.
As we left the room and headed out to the lobby I noticed a sweet little girl sitting with her mom in the waiting room. She was sucking her thumb and holding a blanky. That part reminded me of Devyn. I couldn't help but notice that she was bald. My heart ached for that mom sitting next to her little girl waiting for a treatment room. The allergy/immunology department is on the same floor as pediatric oncology. I can't even begin to imagine how that family must be feeling and how difficult their situation must be. I said a prayer for them. It's easy to get wrapped up in our own difficulties and forget that someone else is dealing with someone like cancer. It's a great reminder to be thankful for our blessings and thankful that our kids aren't dealing with something so incredibly difficult.
I also come to the University of Chicago and leave with this strange feeling of warmth and joy. It's been such a wonderful part of our lives for the last 3 years. 3 years ago we made our first trip there to see that I received the care I needed to deliver 3 healthy boys. We've entrusted our kids to their care many times and we are so glad that we have.
We talked about many things with our allergist, including snoring. He doesn't snore loud, but enough that he asked us to make a video of him sleeping to be sure he doesn't stop breathing when he's sleeping. Apnea is very serious, so we need to rule it out. I really think he's fine, but we'll make the video to be sure.
We also talked about the fact that he breaks out in hives on his face when he eats cinnamon. He agreed that it's probably a "contact allergy" and the cinnamon is just irritating his skin. The hives don't spread and he has no other symptoms, so it's likely not a problem. We'll still avoid giving it to him, but we can all eat it without worrying.
When we talked about the fact that we haven't gone to children's museums or stadiums out of fear of him coming in contact with peanuts he agreed that we made the right decision. He said it's not worth the risk. Noah's allergy is considered fatal, so we should never take a chance. It's heartbreaking to know that he'll miss out on things, but I want him to know that his safety is more important than any experience or event. He'll just have to learn that everyone is different and deals with difficult situations. His situation may be difficult at times, but he will still be able to live a life full of great experiences.
I also brought up the issues we've had with Devyn and reminded him that she came with to Noah's last appointment. She was only 7 weeks old and already having a lot of gastrointestinal issues and had a rash. We suspected then that it was dairy. She still can't handle if I have any kind of cheese or milk. He agreed that is sounds like a milk allergy, although he mentioned lactose intolerance, because of the rash. He suspects milk allergy because of the rash more than anything. He suggested bringing her in so we could talk about it and do the blood test. Her appointment is nexty Tuesday. The best part about the visit is that her inital visit is scheduled for an hour allowing for as much discussion as possible. A typical visit is scheduled for 30 minutes. What a blessing to have that much time with an expert on such a confusing subject.
As we left the room and headed out to the lobby I noticed a sweet little girl sitting with her mom in the waiting room. She was sucking her thumb and holding a blanky. That part reminded me of Devyn. I couldn't help but notice that she was bald. My heart ached for that mom sitting next to her little girl waiting for a treatment room. The allergy/immunology department is on the same floor as pediatric oncology. I can't even begin to imagine how that family must be feeling and how difficult their situation must be. I said a prayer for them. It's easy to get wrapped up in our own difficulties and forget that someone else is dealing with someone like cancer. It's a great reminder to be thankful for our blessings and thankful that our kids aren't dealing with something so incredibly difficult.
I also come to the University of Chicago and leave with this strange feeling of warmth and joy. It's been such a wonderful part of our lives for the last 3 years. 3 years ago we made our first trip there to see that I received the care I needed to deliver 3 healthy boys. We've entrusted our kids to their care many times and we are so glad that we have.
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