Patch testing. We are 30 hours into Carter’s patch testing. He will have them removed tomorrow at noon. I have been so apprehensive about how the testing will affect him, but as usual, he has surprised me at every turn. He was in good spirits for the entire drive to Sacramento. He cried when the nurse put the patches on, but that was to be expected. He was such a happy boy all afternoon yesterday.
At 4:15, he started to get sleepy. He was up early that morning and didn’t get a long nap, but it was too late to put him down for one. By 5:15, he could barely keep his eyes open. He would walk over to a toy, stop to play with it, and end up curled up on the floor with his blankie. It was atypical behavior for him, but I just wrote it off as a lack of overall sleep and a busy day. Carter was in bed by 6 and I headed to bed at 9, preparing myself for the real possibility of a long night ahead. Once again, another surprise! Carter slept from 6 pm to 8 am the next morning, 14 hours!!! He is in a new place sleeping in his pack and play. This is just unheard of for him. I tried to write it off as a need for sleep, but it made me uneasy. The feeling of unease escalated through out the morning. By 10 am, he was yawning and looking tired. He took two half hour naps today in the car and is now in bed. It is 6:30. His mood has changed along with his tiredness. I am worried that this is a side effect of the patch testing, a sign of reaction through the skin. I changed his diaper at 5 tonight and his diaper area was covered in little red bumps. There were also some on his stomach. He also has the RRD (red ring of doom) on his bottom. These are all signs of a reaction, but he hasn’t has anything new. This leads me to only one conclusion; he is reacting through his skin.
The very thought of this frightens me. What will the skin look like, once the patches are removed? He is in obvious discomfort whenever the patches are touched. Another FPIES mom said to push on the patch. If he winces then it’s likely there is a reaction to that food. She was advised to pull that patch off to give some relief. I tried this, but he winced at every patch I pressed. I feel so horrible watching him in discomfort, but I pray that at the end of this, there will be some solid guidance for us and a plan to go forward and move ahead with some new food trials. I was disheartened to learn that the doctor was unsure of the brand of baby food used on the beef and chicken patches. They said it might be Gerber or a mixture of more than one baby food. Gerber isn’t considered a safe product line because of the great risk for cross contamination. It makes me worry about the rest of the sources that were used for Carter’s patch testing. How accurate will the results really be for us? I brought in Turkey, Mango, Prune and Squash; so I know that those were from safe sources.
Noon tomorrow cannot come soon enough. I am anxious to get the patches off his little back and relieve him from his discomfort. I hope that he sleeps tonight. I hope that I sleep tonight. I gave him some Tylenol before bed and he seems to be sleeping peacefully. Now I must try to relax and stay positive for what tomorrow will bring. Maybe it will help us find a way out of this maze.
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