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!
Monday, June 27, 2011
We tried eggs one more time. The big boys were having eggs for breakfast and Carter was literally crying for eggs of his own. His rash had cleared up, so I went with it. I gave him one scrambled egg. He munched it right up. Within an hour, he had a new area of fresh rash on his shoulder and a small rash around his face. That was our confirmation that eggs alone were not going to be a part of Carter’s diet. But what about eggs cooked foods?
The next day I gave him a waffle. They were Carter safe waffles made with corn starch and eggs. The small rash around his face turned into a larger welt and spread to his cheek. Eggs are, were officially a no go. The strangest part of all this involved his patch testing. In January of this year, Carter had patch testing done. One of the patches was eggs. I looked at his back on Friday while getting him changed and the area where the egg patch had been placed was raised and discolored. It was a prefect little circle. The patch testing was done 7 months ago and yet his skin still reacted. This tells me that his body still has a lot more healing to do.
We took the whole family camping over the weekend and learned two very important things.
1) Carter gets car sick. Vomit does not clean off of a cast. Pukie is Carter’s word for throwing up. Always pack extra clothes in case someone vomits twice in 10 minutes.
2) Carter cannot cheat on his diet. No matter how much he begs, we cannot give in. He cried for watermelon. It is on his list of Maybe foods. After 4 small pieces, we had reactive diapers for the next 2 days and disturbed sleep. Watermelon will now go on the Unsafe list.
Camping was a great adventure and we all had a great time! Every family outing is a learning experience and if we do it right, it is also a time to smile and watch our boys be boys.
Friday, June 17, 2011
Eggs. Today is day seven of eggs. Well it should be day 7, but I had to pull them this morning. On the first day that Carter tried the eggs, he got a small red raised bumpy rash on the back of his neck. I thought for sure it was heat rash since he had just gotten the cast on 2 days earlier. Each day the rash got worse, until yesterday when it covered his neck up into his hair, down his back, across his neck and over his shoulders onto his chest. They were now starting to look like little pimples. I noticed several on his bottom as well. He also had a runny nose and loose, slightly acidic diapers. I was really hoping that it was just an adjustment to the cast and the pain that his body was experiencing from the break. I was even hopeful that the rash was a simple heat rash or even a reaction to the cast material.
Sadly, it seems to be the worst of the possibilities, the one thing I wanted so much for him. The food I wanted him to pass so badly. These were the safe eggs. The ones with no soy, no grain, no contamination. I really thought the reactions we saw all those months ago were from the feed given to the chickens. It appears I was wrong. Which leads me to another question: Does that mean that the reaction he had to the chicken had nothing to do with the feed? Does this mean that he will never be able to eat meat? Does this mean that regardless of the source, all meat proteins will cause problems?
We have had 3 doctors’ appointments this week, and all of them went well!! We had the speech evaluation and they also did a full evaluation to look for any developmental delay. He showed normal development in all areas expect his verbalization. In that area he is only 4 months behind, which is pretty good considering all he has been through. Even though he has a delay in speech, it is not enough to qualify for treatment. I am not worried about it though. He has made great strides in the last month and once he enters preschool in August, I am sure his language will blossom even more!
Carter also had his well baby visit yesterday and he’s growing well. His weight is still at the 24% at 26 pounds. His height has really taken off and he’s 35 inches which puts him in the 63%. His pediatrician was really happy with how far he has come. We did have a bit of a comical moment when the doctor tried to find FPIES in the computer system as a diagnosis choice, but it wasn’t there! Guess we are still too new!
We went to see the Orthopedic doctor today to get another X-ray of Carter’s arm. The bone looks great and is healing wonderfully! We will go back next week to get another x-ray to continue to monitor the process of his arm.
It is really nice to get positive feedback from all of these appointments. Carter has started to get used to maneuvering with his cast and has become pretty darn good at using his left hand! Only 5 more weeks!! And then its time to go swimming!!
Monday, June 13, 2011
Relax by definition means: Make or become less tense or anxious or Rest or engage in an enjoyable activity so as to become less tired or anxious (Dictionary.Com)
I have lost the ability to relax. It is not the everyday household chores. It is not the specialized cooking. It isn’t even the care required for 3 growing boys. I know that there will always be something to do. It is part of the package, but my mind cannot let the ever present fear of FPIES rest.
My two youngest were napping earlier and I was sitting at the computer trying to learn more about FPIES, trying to stay one step ahead. I don’t want to miss something important that could help Carter. I don’t want to take a misstep and set him back either. There is always something I can learn from other moms, articles, research and Carter himself. Looking back on Carter’s history, there were so many signs trying to point the way, signs that I missed. I don’t want to miss them again.
I am always waiting for the next wall, the next stumbling block, the next wave to hit. Carter just needs to catch a break. Unfortunately the break he caught was a broken arm. He has been struggling with his speech and the ability to communicate, and now this little independent boy is struggling to do things himself. He is now learning a new word, Help. Help to get on the couch. Help to eat his food. Help to drink his cup. Help to carry his toys. Help to get down from the chair. He has returned to screaming and hitting when he is upset or unable to verbalize his needs. We have a speech evaluation on Thursday and I hope that they are able to guide us and give Carter some relief.
Everyone has their limit, Carter included. I worry so much that Carter will finally encounter an obstacle he cannot overcome, the one that keeps the smile from returning to his sweet face. I am hopeful that together Carter and I can learn to ride the next wave, and the next, and the next. And maybe it's time to redefine the meaning of the word Relax.
I just wanted to share Carter's 2nd Birthday Announcement. He has come so far and we are so proud and an d honored to watch our big boy grow. Thank you to all of you for journeying with us on this road of learning and healing. We couldn't do it without you!
Friday, June 10, 2011
June 14 of 2010 was my first post on the Baby Center FPIES board. I was reaching out to other moms who knew where we were and where we were headed. Carter had just reacted to rice milk. June 6, 2011. I gave Carter yogurt with Rice Starch in it. We have come so far, and yet still have so much further to go.
Next weekend is Father’s Day weekend. It is also my Brother in Law’s birthday. Happy early Birthday J!! It is a time of fun and memory making. Or at least it should be. For me it marks our true FPIES anniversary. It was not Carter’s first FPIES reaction, that happened in May. But it was the moment when I realized that this was a force much bigger than I had anticipated. It was something I could not navigate on my own. It was the moment I realized that we were dealing with something much more involved than a severe case of Milk and Soy Protein Intolerance. This FPIES beast functioned like nothing I had ever imagined.
The Thursday before Father’s Day 2010, I gave Carter a cheese less quesadilla. There were refried black beans and tomato salsa. I checked the product labels carefully to make sure they were free of Milk, Soy and Rice. Carter gobbled them down.
Friday morning, June 18, 2010, he woke up in pain. His diaper was full and had leaked all over the bed and himself. He cried when I changed him. I cleaned him up, consoled him and tried to figure out the cause. Later that day, he had another blow out diaper. It was full of mucous and burned his skin. After that diaper, I turned to the new found support of the other FPIES moms. Talking it over with someone who is now a great friend, J.M., I realized the connection. Soy is a legume. Black beans are a legume. It was the beans that were causing all the distress. After this realization, Carter had another blow out diaper. He sat in the bath tub screaming while I tried to clean off the pain I had inflicted. I called my husband in tears. I had done this to him. I fed him this horrible food. It was all I could think about. I held Carter and we cried together.
Eric came home from work as fast as he could. His Father’s Day was spent helping to care for a very sick little boy. It was not the last time I called Eric at work, in desperate need to hear a calm voice. It was not the last time that FPIES stole precious family moments. It has been a year since FPIES became the 6th member of our family. It has taken me a year to come to terms with the fact that FPIES is not leaving. We have learned many of the rules, but we still make mistakes. We still lose sleep. We still shed tears.
We have also learned to savor those big smiles and bright eyes. We have learned to slow down and focus on making happy memories. We celebrate the little victories like Carter safe eggs from the local Farmer’s Market and we have found a strength we never knew was there. On our 1 year FPIES anniversary, I will not mourn was has been taken, but I WILL celebrate in ALL that we have been given.
A lot has happened in the last 3 weeks. I was just beginning to think that things had leveled out around here. I should know better. I start thinking like that and BAM! Life decides to shake things up a bit!
We finally got our long awaited results back from New Jersey. They showed some promise that his body is learning to develop mechanisms to fight FPIES, at least for Soy. It doesn’t mean that he won’t have a reaction to Soy and it doesn’t guarantee that he will outgrow it, but it does tell us that someday his severity may not be as bad. It also showed that his reactions to Milk and Wheat were much worse that I realized. It has started a fire within me to eliminate Soy, Dairy and Gluten from our lives. It will not be an easy task, but our home needs to be a true Safe Haven for Carter.
We had an accidental run in with rice. I bought Carter some Coconut yogurt, a food that I knew to be safe. I made the mistake of not double checking the ingredient list. He ate half a cup for dinner. He had disturbed sleep that night and a nasty green acidic diaper full of undigested food. Yuck, I know. It shocked me back into the FPIES reality that I thought we had so far, gained some real control. I picked up the yogurt container and there on the ingredient list was Rice Starch. The last time we encountered rice was a year ago, by way of rice milk. It was a pretty obvious and quick fail and we haven’t touched rice since. I always wondered whether Rice was really a trigger food. We got our answer. Rice will go on the list of Untouchables. Just one more thing to avoid! So now we add Rice to the list of foods that need to find their way out of our home.
We also decided that it was time to try putting all three boys in the same room. The big boys have shared a room for over 2 years and have been eagerly awaiting Carter to join in the nightly slumber party. We moved Carter’s crib into the Big Boy’s room a week ago. It was a little rough in the beginning. Carter tried to get his brothers to play with him and it took over an hour and a half for him to finally give up. The nights started to get better and then . . .
Wednesday we took the boys to the park. Carter wanted to go down the BIG BIG slide. He loves slides! He started out just fine, but then fear set in, he put his foot out to stop himself and it caused his body to jolt forward. He extended his arm to catch himself and I watched it buckle underneath him. When I picked him up, he was terrified. There was a bump on his head, but he looked alright otherwise. It was 2:30 and he hadn’t had a nap all day. We put him in the car and then put him down for a nap. He woke up at 4 and I knew something wasn’t right. He just stood there and cried. I immediately thought food and mentally ran through everything he’d eaten or been exposed to, with FPIES you always think food first. He sat in my lap and cried. I couldn’t think of anything he had eaten that would cause such upset. So we started a full body evaluation. Bending and pressing on all parts of his body to find the cause for the pain. I bent his right wrist forward and he screamed. I pressed against his arm which brought on more tears and screaming. His lack of verbalization makes isolating pain tricky. It was an emotional time for all of us, big boys included. We compared the right arm to the left and it was considerably swollen. 4 hours and an ER trip later; we had a splint and x-rays to confirm a broken arm. We had to wait until the next day, Thursday, to get a cast. They wanted to wait for the swelling to go down. A visit to the Orthopedic doctor brought a Camo cast past the elbow and an explanation that he had broken it in 3 places, both long bones in his right arm. We will now see them once a week for follow up x rays to check on the healing progress.
There has been a question of his bone density, but that will be brought up with the pediatrician next week. Carter also has a speech evaluation next week as well. And through it all, he has remained all smiles. He gets a little frustrated with the loss of independence, but we are all working to help him stay strong because it is his strength that strengthens us.