After 575 days on GAPS, Carter is offically healed. Now he eats everything!
After 575 days on GAPS, Carter is offically healed. Now he eats everything! Well almost everything! He's still eating a real food/non processed diet for the most part and we will stay away from soy in all forms and cauliflower, mainly because Mommy is still scared of those foods. We are sticking with the 80/20 ratio of foods because now he can indulge in a cheat every once and awhile and he's just fine!
Tuesday, January 25, 2011
Where to start? So much has happened in the past several weeks. First: Patch testing. There were too many foods on Carter at one time and he reacted to the tape as well as many of the foods. His worst reactions were milk (blistered his skin), soy (leaked out and down to his bottom) barley and wheat. Corn and potato also reacted, which is troublesome since the majority of his diet consists of corn. The doctor dismissed the reactions as redness, inflammation and irritation from prolonged exposure to the food and the tape. But he didn’t view them as reactions. It has since come to my attention, that this doctor didn’t have a firm knowledge of how to do or interpret patch testing. It gave me some useful information, so for that reason I am glad we did it.
The downside of all this is that Carter had a full blown reaction from all the different foods that were used during the patch testing. It pushed him over the threshold and it was more than his body could take; lethargic, diarrhea, irritability, limp, pale, everything but vomiting. During the week after we returned home, his symptoms were not improving. Carter started to run a low grade fever on Friday. This can happen when a little one is reacting and their body is trying to fight off the offending food. He started vomiting the Saturday after we returned home. The fever continued, but the vomiting decreased to only once or twice a day. By Monday night it reached 104.8. Tylenol would keep his fever around 102, but once it wore off, we were back up to 104. I took him to the doctor on Wednesday, as we were not seeing ay improvement. Carter had double ear infections and a respiratory infection. He had not had fluids in almost 24 hours and was dehydrated. We were given antibiotics and inhalers with the knowledge that I needed to get fluids in him within the next 24 hours.
Carter’s body was so tired from the fever and the constant work of trying to breathe; he had no energy or interest in drinking. At the advice of his pediatrician, and my own burning mommy instinct, I took him to the Children’s hospital emergency room at 1:30 pm on Thursday. We did not make it into the ER until 8 pm. By his point, Carter’s little body was working over time to breathe. His oxygen levels were at 88 and he was showing signs of dehydration, The ER team was amazing. They got his breathing treatments going, an IV for fluids and were very concerned that he had been in the ER waiting room for almost 7 hours. During this 2 week period, Carter had also lost over a pound, which is a lot for his little body. Carter was not able to keep his oxygen levels up on his own, so he required constant oxygen. This meant that we would be admitted to the hospital. It was almost 3 am before we finally made it into our room. The night staff was amazing and got us as settled as possible, considering Carter was hooked up to oxygen, had an O2 sensor on and an arm completely taken over by an IV. We were released on Saturday, after Carter was able to stay off the oxygen and maintain his levels for 12 hours. It was a long ordeal, full of ups and downs. We had a wonderful overnight nurse who made the nights bearable. I was there alone with Carter, so my husband could continue providing our 2 older boys with as normal a life as possible. On Friday night carter had a very painful reaction to the amoxicillin. This experience was a complete opposite from the day before. The staff forgot to bring any food for Carter and left us on our own to monitor his O2 levels, and place him back on the oxygen if necessary. I am still shocked by all of this . . .
And yes, I believe that the severe reaction to the patch testing weakened Carter's immune system causing a minor illness to irrupt into a severe one. We now have a diagnosis of pre-asthma and reactive airway disease or RAD.I have a feeling that Carter deal with asthma for the rest of his life.
It has been an emotionally, mentally and physically taxing month. I was hoping that January would bring with it hope and health and the promise of some stability. Instead, it has taught me how to bounce back, how to take it as it comes and find the joy in even the smallest of moments. I went for 3 days without seeing my little baby boy smile. His face was full of pain, fear and worry. Those were the moments that broken my heart, that made me push through when so much of me just wanted to give up.
The strength and hope and help of our friends and family have truly been the one of the guiding forces through all of this. In those moments of total darkness, alone in the hospital room holding a screaming baby; I never once felt truly alone. I knew there were people with me and through their faith, prayers and hope; I found my own.
Tuesday, January 11, 2011
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.