LONG update on life…life with FPIES

It has been a busy, hectic, tiresome last two months. I haven’t had the energy to write or really know where to start. So much has happened, changed and is still changing. But before I get to lengthy let me just say I knew from the time my son was 3 weeks old that something was off and not right. I have had that gut feeling for months and spent the last two months researching and fighting to find out what is wrong. Always go with your gut despite what any doctor may tell you otherwise.

Last I left things my son had developed a rash on his forehead and scalp and seemed to really be fussy more of the day than usual. Shortly after my birthday and his 2 month shots he started getting a red rash around his head. He was scratching it all the time. He was waking from his naps screaming in pain. His hands were always scratching his face and head. Always. It got so dry and he had all these little marks on his head. He started getting eczema on his arms, legs and a bit on his face. I tried some coconut oil and keeping him moist with lotion. But when the rash wasn’t going away I thought it was time for the doctor to have a look. I had my suspicions that dairy or almond milk and nuts were a possible problem in my diet and I wanted the doctors take on it. Well, what a joke of an appointment. I’ll skip the long winded version but here is the shortish version of the appointment. First off, he came in and said his rash was acute dermatitis and to use hydocortozone cream. I brought up allergies and he said he was to young and to young to be tested. He kept fighting the idea that this could be food related. He said for me to cut dairy for a few days and if nothing changed then to put it back in my diet. He said my son was gaining weight and growing so really there was no problem. Just some eczema and again why would I want to see an allergist. I told him there had been black specs in my sons diaper and could we test stools. He mumbled and basically said they didn’t do that. I showed him a fresh poo diaper that my son so kindly delivered on time at the doctors office. I showed him the specs and he barely looked and said it was all fine. No worries. I kept pushing on with the stool sample and why we couldn’t do that because I had read black specs could be blood. He spent more time making me feel crazy and again going back to babies are fussy. They wake up at night and need to eat. They fuss. Well that just ticked me off because there was no need to treat me like a teenage mom that was looking for a full night sleep. My gut told me something was wrong and I was trying to ask for some medical help. He told me to cut dairy and also cut nuts and even coconut milk. I had just mentioned I swapped my almond milk for coconut milk because I thought he could have a nut allergy with all the nut products I was consuming. He looked at me and very seriously said that a coconut was a nut and I should avoid it as well. I kindly replied that it was not a nut. He seemed to disagree. After I told him my concerns again and that this wasn’t a thriving issue but my sons quality of life I think I twisted his arm for an allergist referral. He was so stuck on only seeing that my son was gaining weight so why was there a problem. The problem was him trying to fit my son into his little box of numbers and not listening to me! I left the office very upset and desperate to find another doctor. The fact he was unwilling to listen to my concerns was the final straw.

I made an appointment to see my lactation consultant and realized after she made arrangements to see me the following day, on a Friday, a day she was not normally in the office, that I should have seen her first. Many doctors know nothing about breastfeeding and being that all my son is getting, I don’t know why I thought his doctor would understand something in my milk was the issue.  I had a wonderful sit down meeting with her and went over everything. She seemed to think it was a dairy and soy issue and recommended I cut it all out. Not just obvious dairy like milk, cheese, butter, yogurt but cut the dairy in processed foods, flavorings, etc. Let me tell you there is a lot of hidden dairy!! Latic acid-dairy. Caesin-dairy. She said it would take a few weeks for it to clear my system and my sons. A few days would possibly allow me to see a better baby but a full few weeks for true results. I left with some hope and feeling great about my new plan. She also gave me the name of a peditrician to try because she agreed my current one was not very good and not looking out for us.

I tried calling the allergist we got a referral for and they were not accepting patients for 4 more months. 4 months?! But I had issues now and needed help NOW! I tried a few more places and they said they would not even see a child that wasn’t two years old. Feeling defeated my husband had the idea to ask his allergist if they would see a baby. We got a really lucky break because the allergist said he felt he knew what was wrong and wanted to see my son the following Monday (that was only 3 days away thankfully!). He made time for us which was just wonderful to hear! When I took my son in the allergist said he felt it was FPIES. He said I needed to stop breastfeeding and put him on this special formula that was all amino acids not protein like most formulas and free of milk and soy. Well he kinda shell shocked me with telling me I had to stop nursing him. He said my baby was reacting to proteins in my milk and the only way to get him better was to put him on this successful pricey formula. He did say I could resume breastfeeding in a few months if I absolutely wanted to try. I laughed out loud and told him breastmilk did not work like that. There was no off and on switch. They did do a skin prick test for 12 things and first off, my kid took the pricks like a champ. He didn’t cry or scratch or anything. This kid has always been tough and more so each day when I see how much pain he has gone through. So some pricks on his leg felt like nothing to him. All of them came back negative which sealed the deal with the allergist as him for sure having FPIES. FPIES is a non IgE allergy so it doesn’t show up on a skin test or blood test. “Food Protein Induced Entercolotis Syndrome: a type of food allergy affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include profuse vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests. Furthermore, a negative allergy evaluation may delay the diagnosis and take the focus off the causative food. Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger.”-The FPIES Foundation

I left that appointment with mixed feelings and mostly focused on him saying I could not breastfeed anymore. I continued to limit my diet but didn’t kick it into high gear with eliminating all soy until 8 weeks ago. I thought avoiding things with soy, soybean oil, etc in the first few ingredients would be enough but it wasn’t. Burt’s Bee’s Baby Lotion has soybean oil, vegetable oil has soy, Kashi bars have soy. Basically anything and everything has some soy in it which means a primarily vegan diet give or take a few things as well. I started writing down all the food I would eat daily and write down everything my son would do (nursing, poop details, mood, skin rashes, etc) to have a running record to look at that was causing his pain still.

In the meantime, I found a new pediatrician who seems to be pretty good about listening but not so good in remembering my son and what we are dealing with. We went in for his 4 month wellness and since they are a new office they didn’t have all the vaccines yet so we would have to come back at his 5 month mark. He was very good about listening to my concerns with my son and telling him about his FPIES diagnosis. When we returned for his 5 month visit for shots only I had concerns about the shots because of some ingredients in most of them that my son had an allergy to.  I asked that we only do two of them (that I had looked up and cleared..so I thought) because of the casein in many of the vaccines (DTAP for example). I am not opposed to doing his shots but I am wanting an allergist opinion on how to go about them and when. My doctors office does not have an EPI pen or an action plan on how to handle a reaction so I wasn’t comfortable trying that out. Turns out, he had a reaction to his HIB B shot that contains mueller and miller medium which has casein solution in it. I only went through and read the main ingredients but not what those ingredient had in them as well like the mueller and miller medium. Yea, this is why the internet is my friend and why we learn to read in school! Life skills!

As it stands now we are waiting to see a pediatric allergist few hours north of us next week. I have been limiting my diet and charting his reactions and progress. I am currently questioning strawberries, avocados and or coconut? Not sure but when he breaks out in hives and I can’t pin point what caused it in my diet it’s really disheartening. This poor kid is going to have a memory book filled with what his mom ate and detailed notes on his poop and behavior. Ha! So far I have all dairy, soy, egg, oats, and nuts eliminated.

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