Friday, April 1, 2011

Food Protein Intolerance

Life has been insane this past year. My good friend, Melissa, tried to prepare me for having two kids so close together, but honestly, nothing could prepare me for the craziness this past few years have been. I haven't blogged in months because I have been putting too much on my plate lately. I feel the Lord has told me to redirect a little and get back to doing things that give me some sense of balance, like blogging.
My girls are my world, but boy, oh boy, have "their health issues" made me question my strength to do this mommy thing. I decided I am going to write about my girl's health issues because I recently have come across many blogs that talk about what my girl's pediatrician believes they have. Also, writing it down may help me to make sense of everything too. Both my girls have been diagnosed with Food Protein Intolerance which means people who have this are intolerant to proteins in milk, soy, and certain foods. I finally am understanding this syndrome better then when I did when Anna first was diagnosed. My doctor says that it is not an "allergy" but an "intolerance." Their body simply can't tolerant the proteins.
Let's start with Ellie. Ellie was a fussy baby and needed to be bounced none stop. Her bowel movements (sorry to be gross) were explosive and you could hear it across the room. I heard this was normal but she would scream when she would go. I started to notice blood in her diaper at about 5 weeks old. Ellie's doctor (we don't see this doctor anymore) wanted to see her for the blood in her stool. The doctor said she is probably allergic to dairy and that is what is causing the blood in her stool. Her doctor wanted to take a quick x-ray to rule out any other problems. On my way home from the doctor's office, the doctor called me and said that the x-ray showed a "twisted bowel" and I need to take her to Children's ER. Of course, I was freaking out, I was such a new mom and didn't know what I was doing and now I had to take my 5 week old to the ER.
We got to the ER and after a ridiculous time in the ER, they redid the x-rays and said that Ellie's bowels were fine and if it was a twisted bowel then it fixed itself. Long story short, they admitted her. She bleed in the hospital, but the attending physician said she had an "anal fissures" but the residents were saying her blood levels were showing an "allergy" to something. I left the hospital confused as ever.
The next several weeks were extremely hard on me emotional and physically. I had severe postpartum depression and on top it I had no idea what was wrong with my baby. Ellie bled everyday. I would call the nurse and say, "She bled so much today and I don't think this isn't normal." They would brush it off, "It's just an anal fissure and it will heal."
One day, I was dropping off Ellie at my mother in-laws so I could go to work. My sister in-law, Julie was visiting that day. A few moments after I came in, Ellie screamed and passed a bowel movement. I changed her diaper and of course, there was a ton of blood in it. I left her to go to work and on the way to work I kept telling myself that it is just an "anal fissure" and to stop being over dramatic. A few moments later, Julie called me and was very concerned. She said that her stool smelled like vomit and this is NOT NORMAL. Mommy radar turned on and I had had enough. I called Doug and told him to take him to the clinic I work for and get her seen NOW.
Doug took her to the walk in and an awesome walk in doctor saw her. The walk in doc said that her anus is abnormally tight and this is very dangerous. I was working while they saw her but the doc pulled me aside and said, "Jess, this is very serious. Your baby needs to be seen my general surgery at Children's immediately. I just had a child die from this."
We saw Children's General Surgery and the doc there said she had a mild form of an "imperforated anus" which is an anus that did not fully develop in the womb. He said she had a mild form but enough to cause major issues. He told me to do dilation which meant I had to insert a rod into her bottom twice a day to stretch her anus out. I'm not even going to go into detail of how much pain that caused Doug and I to do to her everyday. It was horrible.
The surgery was two weeks later and I was ready for the bleeding to stop. Ellie was 3 months old when her surgery was performed. About 30 mins into the surgery, I got a page from the doctor saying they were done. The doc said that everything is lined up fine, but and the "web" around her anus was now broke and he can now insert a size 13 dilator and that is a normal size. Ellie was a size 7 initially. He said, "You guys did such a good job with the dilation that we didn't have to cut her." They did do some nerve and muscle testing down there so it was more like a procedure with her put to sleep. So great news right? Not so much.
(Ellie 3 months old getting ready for surgery)

The bleeding stopped but the impactions started, The ARNP said give her two laxatives everyday and she will out grow it. Again, I left the doctor's office confused as ever. The wheels were turning in my head and I kept flashing back to what every doctor said...

"Her abnormal lab work shows a dairy allergy" then they would say
"Maybe she doesn't have a dairy allergy."

"She has an anal fissure" then they would say
"Well, maybe she doesn't have an anal fissures."

"She has an imperferated anus" then they would say
"I think she never had an imperforated anus"

"She might have scar tissue" then they would say
"Well, it looks like she shouldn't have scar tissue"

"She may have Hirschprung's Disease." then they would say
"Negative on Hirschprings"

"She just has chronic constipation with no source." then they would say
"She has inflammation in her bowels, but it's probably from the dilations"

I was about to have my second baby so I just dealt with it on my own. Giving suppositories was my day to day life. Dealing with a screaming baby who was so impacted was something I got used to, believe it or not. I just told myself, "Ellie has chronic constipation with no source, it's just what it is."
When Anna was born I noticed how much she spit up and how fussy she was. I complained a lot to her old family practice doctor but it was brushed off. Her weight was stable so there was no reason for concern. Anna became pale and her hair was wispy. She cried all the time and especially screamed after she ate. She had her good moments but after eating was the worst. She spit up large amounts which I now know that she was actually vomiting. Most kids with FPIES vomiting excessively, Anna did not vomit like that, just enough to show something was wrong.
(Anna sick w/ high white blood count and failure to thrive)

By the time Anna was 7 months old, she looked awful. She was very pale, eyes sunken in, and she was very, very thin. I blame myself that I didn't speak up sooner and stand up for my daughter, but we were so busy dealing with our short sale and moving that I just thought it was normal for Anna to be that way. "She's just a fussy baby," is what I told myself. I brought her to her 6 month Well Child Check and the doctor noticed how pale she was even before I said anything. She also said she was very concerned about her weight. She diagnosed her failure to thrive and sent us for blood work and x-rays. The blood work showed a very high level of white blood cells and low level of liver levels. The doc said she needs to be seen right away because she could have a UTI or Pneumonia. So off to Children's ER we go. Children's said she had severe reflux and if I don't get this baby eating she would be on a feeding tube. I was given reflux meds and sent home.
The next three weeks were some of the hardest weeks of my life. I made the plunge and switched to an actual pediatrician. We will call him "Dr. Wonderful." Dr. Wonderful said he has been to several conferences on Food Protein Intolerance. He has seen very sick babies become well after being taken off of dairy, soy, rice, and some other foods. He said that Anna fits the protein intolerance with...severe reflux, horrible constipation, failure to thrive, blood in stool, chronic cough, pale, won't eat, won't play very much, cries throughout the night, etc. He put her on Nutramigen and said I should see a change slowly over 3 weeks. I was SUPER excited.

FINALLY, some answers and my baby will be better. Well, I didn't know that it would take Anna forever to actually take the formula...I didn't know she would get her first ear infection while we did the switch...and I didn't know that there were days when she would only eat 12 ozs. It was a hard three weeks, but when about the 3 week period ended, I had a different baby. She had color in her face, her bowel movements were COMPLETELY normal, her hair looked fuller and healthier, she laughed (she barely laughed before), she started playing with her sister, she stopped excessively spitting up, she gained over a pound, the blood in her stool was gone, and she was sleeping 8-10 hrs a night. Well, Dr. Wonderful was right and he was so happy with her progress he gave me a fist pump. Then, Dr. Wonderful said, "I bet you Ellie has the same thing."
(Anna healthy)

We begin the diet change in Ellie about a month ago. I noticed some changes especially in her behavior. She was more relaxed and seem happier. However, her chronic impactions were not getting under control. Therefore, it was time to go back to the doctor.
I brought both girls to the doctor yesterday. Anna for her chronic ear infections and Ellie for her chronic impactions and to talk about her diet change.
Dr. Wonderful said that because Anna has had double ear infections every month for the past 4-5 months and with my husbands history of tubes and chronic ear infections, it was time to refer her to Children's to talk about tubes. Then, we talked about Ellie. I took a picture of what she has been passing in her diaper lately and showed the doctor. Dr. Wonderful said that "she is above and beyond normal treatment." We are talking MASSIVE amounts in her diaper, adult size, enough to make her diaper fall off. He believes her protein intolerance wasn't caught in time so her colon is damaged. It needs to heal and it can't heal unless her stool is super soft. However, Ellie is on an adult does of Miralax and a 12yr old dose of Senna and it still isn't even close to controlling it.

(Main ingredient is senna)

Dr. Wonderful referred her to a good MD at Children's GI that has experience with protein intolerance. So off to Children's we go, again...

Do I think my girls have this Food Protein Intolerance? Honestly, I don't know. I just know that I feel peace with Dr. Wonderful and he is smart, super smart. I trust him and he cares about my girls.
My biggest struggle right now is making food for my girls. Anna can't have dairy, soy, rice, oats, barely, sweet potatoes, and squash. Ellie can't have dairy, soy, or rice. It's really emotionally and physically exhausting. I'm sure moms who are reading this, who deal with restricting your child's diet, can relate with that.
Even though these have been a difficult two years with my girls, God has showed me so much. There are parents out there who have children with cancer or serious medical conditions. My girls don't have those and I am so thankful. I am thankful that my children are happy and they bring so much joy to me. So when I throw myself a pity party, I remember it could be so much worse and I am so thankful to God for that. God is faithful and God loves my children and for that, I can limit my tears.


  1. I really had no idea the extent of issues your girls have. This is so tough, but it does sound like there is hope, through God and God giving this Dr. wisdom. Wow, Jess. Definitely praying for you!

  2. Oh Jess...I love you and your family so much. I can't imaging going throught all of this. Don't limit your tears...get them out. I know God is good...really really good. And I also know this is such a hard time for you and Doug right now. I pray for you every day. You can always call me, BFF. I love you!!

  3. Hi Jess! It sounds like you've been through a really difficult time. I'm so sorry! When I saw the word "colitis" on your Facebook page, it caught my eye. There's just so much info out there to sift through. I've been really sick since getting married: 30+ food sensitivities, chemical issues, major gut destruction (I could go on!). I found the GAPS diet principles to be helpful for healing. It's light on supplements and heavy on nutrient-dense, very digestible foods (not a money grab, and the cynic in me likes that!). I'm hoping to get rid of my allergies/sensitivities, eventually. Thought I'd pass along the info in case it's helpful to you.

    Here's a good, shorter article, focusing on the GAPS diet, written for parents:

    Here's the website of the doctor (also the author of the above article) who perfected the diet and treats people with it:

    God bless you all! Feel free to call if you want to trade notes about this nasty gut stuff. Maybe there's some crossover, although I'm pregnant now, thinking very much about this baby, and I just can't imagine what a difficult road you've been walking.

    Whitney Coleman (Huntley)

  4. Hi Jess, I just stumbled upon your blog as I was looking up food protein intolerance. All four of my kids were like yours as babies. It took me until about a two years ago with my youngest to realize it was primarily milk, soy and gluten. My seven year old still has problems with them.

    I would love to know who your Dr. Wonderful is that has experience with fpies. We are in Oregon, but lived in WA for 6 years. May god bless you and keep you and your dear babies healthy and well!


    1. Hi Susie! His name is Dr. Micheal George of Pediatric Associates in Redmond, WA. Sorry to hear about your kiddo's allergies. :(