Sweat test, Allergy & Rheumy

Today was a very, very long day. We started out with a sweat test at the UNMH lab. They were running quite a bit behind and our 9am appt turned into a 930 appt. The nurse was great and very patient with Pacen. He was a little fussy, but she said he was actually the calmest baby she's ever had with a sweat test. It started out with little clear discs of a sweat inducing chemical attached to electrodes on either sides of his forearm. The discs were placed on his arm for 5 minutes each, and then removed and the sweat collection bracelet was bandaged on for 30 minutes to collect the sweat. (I have a photo of it, but I can't get my phone to send the image with the hotel wireless.) The test ended up negative for cystic fibrosis, which is what we all thought, and glad to rule out. The levels were 26 on one arm and 30 on the other. Anything 40 and under is normal and not at risk for cystic fibrosis.

Next, we raced across town to the allergist. We talked about his recent epi pen usage and how that all went down. He agreed that it was probably the avocado, which is related to latex, banana, kiwi, melon, papaya and mango.... Sooo as you can imagine, those are foods we will probably have to eliminate if the test comes out positive. Dr. Clayton only had a couple of the foods in his office today so we decided to reschedule for tomorrow and do the skin test all at once instead of two days. I think it would be easier on Pacen this way. Poor kid has been through enough. Dr. Clayton said he wants to see Pacen every 6 months, unless an emergency happens or any big changes are made with reactions to different foods.

After that, we flew back across town with hopes the Rheumy would be running behind, thankfully he was. We waited quite a bit longer past our appt time, but once we were taken back, we got the same thorough attention that the other patients did. We were seen by Dr. Johnson, a nurse practitioner and a med student. It was nice to have different opinions and expertise all in one room. Unfortunately, the only blood work that came back was the calcium, iron, vitamin d and part of the lupus screening which all were normal. Without the other blood work, the Rheumy couldn't make a diagnosis, give much of an opinion or really help us out. He ordered more blood work and wants to see us back in a few months, so we have a trip scheduled 13 May with two appts already, one for GI to see Dr. Noel and one for the Rheumy. I just have to call sometime this week to get the results of the blood work taken from Friday. He was really impressed with the photos of Pacen's purple spells.

Tomorrow we have the GI appt, blood work and then back to the allergist for the rest of these food tests. Another long day, and hopefully we can make it back to Alamogordo before it is too dark. I will send out another update once we are done for the day tomorrow.