National Jewish Health Pediatric Atopic Dermatitis Program, Day 4

Last night was a good night! Titus only woke up one time, and I was able to get him back to sleep quickly without getting Mariya to nurse him. We’re hoping he sleeps all night tonight.

Today was an easier day. We were planning to be at the hospital by 8:30 am, which would mean we would have to leave the house at 8. We got up at 7, got ready, and about 7:50 our hostess asked me if we would eat breakfast. I told her we had to leave at 8, and she was like, “ok”. I thought that meant she realized we didn’t have time, but it actually meant that she started cooking eggs, bacon, and tomato for us. Needless to say, we were very late getting out of the house. 🙂

It was a beautiful morning with lots of sunshine. We arrived at the hospital, and the nurse assured us we weren’t late. I guess they are laid back about when you get there, as long as you don’t have any appointments or tests scheduled right away. We ate breakfast and got Titus started on his first bath. Basically, I sit on the side of a bath tub and pour water over Titus for at least 60 minutes every day. 🙂 It is definitely worth it.

Titus was looking really good this morning, but his cheeks were quite pink. Not sure why, although he is teething a lot and getting several molars. Dr. Rabinovich came in while he was taking his bath and looked at him. He is still happy with the progress. He said we should wait and see how the cheeks are this afternoon. He also said we might start some nasal washes, as sometimes these small kids will rub their face and get bacteria from their nose onto their cheeks, which causes irritation.

Titus took a two hour nap in his wraps after his bath, and Mariya and I were able to get short naps as well. In fact, all four of us were sleeping at one time and Linda got a picture of it for proof. Doesn’t happen that often! Not too long after we had fallen asleep, Dr. Dutmer and Dr. Rabinovich came in to discuss some of the preliminary allergy test results. We really can’t tell too much yet, as they like to compare skin prick tests, blood tests, and food challenges. However, we were a little surprised to see beef showing up as an allergy. We still don’t know for sure, because sometimes this is due to the similarity between beef proteins and milk proteins. He might just be allergic to milk and it is showing up for the beef as well. The doctors would like us to avoid beef for a little bit, just to be safe. So sad, we are losing foods rather than gaining! But hopefully we will gain a lot more next week.

I also asked the doctor if we needed to worry about anaphylactic shock or if we might need to have epi pens. He was actually surprised we didn’t already have one – he had assumed one of our other doctors had already prescribed one. He said we would get one right away and the nurse would teach us how to use it. The nurse was also shocked we didn’t have one – she was like, “that’s scary!” These epi-pens are $300-$400, but our nurse found some that had close expiration dates so the pharmacy gave them to us. Back home our insurance should cover them.

We got Titus unwrapped and lotioned, and then ate lunch. Next was another skin prick test for more foods. This one showed lots of big allergies for peas, peanuts, etc. The doctor hasn’t given us the results, and I forgot a lot of them. I know it also said apples and pears were ok. White potato had a small reaction.

After the skin prick test, we had an appointment with a nutritionist. She also had a student with her observing. Is this week a special week for observation or something? Yesterday someone observed our skin prick test, and the day before that someone observed us doing the wet wraps.

The nutritionist wasn’t too concerned with Titus’ diet, although she did say we should continue vitamin d supplements and also add some iron for a short time. Calcium is another she suggested we try to get more of into his diet. She will talk to the doctors and see if we can maybe try to get rice milk, coconut milk, or some dark greens into the diet for calcium. She said Titus’ height to weight ratio was about average, so she wasn’t worried about his weight. He is just a short guy. 🙂 She also talked about giving Titus exposure to a variety of food textures, letting him feed himself, breast feeding and more. It was helpful. It almost seemed like she thought we would be against adding some things to the diet, but we assured her we would be happy to add almost anything to the 14 foods they are able to eat now. 🙂

After our appointment, Dr. Rabinovich looked at Titus again. Sure enough, his cheeks had cleared up nicely. The nurse asked him if we would still do the entire body wet wrap, and he said yes, let’s do it for at least another day. Sounds like we might be able to back off some of the baths and/or wraps soon, though.

We did Titus second bath for the day, wrapped him up, packed our stuff, and left the hospital around 3:30. It was a good day, and we are thankful for more progress.

Thank you for your prayers.

2 Responses to “National Jewish Health Pediatric Atopic Dermatitis Program, Day 4”

  1. Debbie says:

    Love reading those posts & the updates. You guys are going through quite the ordeal. Continuing to pray for you all.

    I don’t know anything about the skin prick tests but the beef made me curious about something. I know some people are unable to eat conventional grain fed beef but can tolerate organic grass fed beef. Would that apply to the tests as well? Are they testing him with grain fed beef? I don’t even know if that’s a reasonable question? Just a thought I had….

    • Matthew Farnell says:

      Debbie,

      I really don’t know – that is a good question though. We only do grass fed beef at home, and he seems to be just fine with it. Not sure why the test shows he might be allergic. It could be because he is allergic to milk, and sometimes the body reacts to beef because the proteins are similar. Thank you for your prayers.

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