It has been so long since I posted!! There are so many topics I want to talk about and I so do not know where to begin!!! To make it easy I’ll start with an update of the situation in my last post.
About a month after I posted that post we took baby Alex to see an Allergist. Him and Joshua had a prick allergy test done. Alexander’s came back normal and Josh came back with an allergy to grass. The Allergist diagnosed Alex with having what is called “FPIES” which stands for Food Protein Induce Enterocolitis Syndrome. His was caused by dairy and soy protein. It’s somewhat of a complicated diagnosis though because it often tests normal and negative on IGE type allergy tests, so the diagnosis is made based off of symptoms and reactions to different foods they eat. I’m thankful to say that Alexander’s case would be one I would consider rather mild. As long as we keep the trigger foods out of his diet he does well.
We went through a very rocky and very stressful road from the time he was born until he turned a year old, with things peaking out right around a year. He went from the 60th percentile down to the 2nd and faced dehydration from refusing to drink. It was so scary at times. Some reactions were worse than others. He had continuous vomiting spells, crazy diarrhea, refusing to eat and drink and even lethargy…
When he turned a year I was ready to give up breastfeeding him. (I didn’t want to necessarily, but felt like I had no choice) I felt like it was the best thing for him. The problem was that I didn’t know how to stop. He wouldn’t drink anything else, (he barely drank that…) and he often refused food. He also was allergic to all the normal formula you could buy in the store and was allergic to soy and cows milk…
The week before his first birthday we went on a trip to Colorado to see our family. I decided it was a good time to try to wean him. I wish I could say that I did it before going, or that I did it correctly, but I didnt. My first intention was to continue to try to nurse through the vacation, but I quickly realized that it really wasn’t possible, nor did I want to try to keep up with my crazy pumping schedule while traveling. I knew I would be faced with many opposition by well meaning people who did not understand.
I pumped the way there like normal, but Alex refused to drink it… I was stressed and ready to be done… I wanted chocolate and ice cream and all the yummy things I had given up that whole year! I caved a few times on the trip and ate a few pieces of chocolate… when we arrive the vomiting and diarrhea started… he was so sick… at that point I really felt backed into a corner because I already had eaten those things and had no way to remove it from my body, not to mention I felt so done nursing! So I went about that week trying to find anything he would drink! We first went healthy and bought some almond and full fat coconut milk and some goats milk powder. I first tried the almond and coconut…. he wouldn’t touch it… then I tried the goat milk, again he wouldn’t touch it… we tried smoothies, water, gaterade, even slurpees! He outright refused everything! Then he started wanting to nurse, but every time I nursed he would get more sick and refuse more food… also since I wasn’t pumping or nursing around the clock my body quickly felt like it didn’t need to make milk and I was not producing much of anything… (I struggled with supply a lot after switching to pumping because my body doesn’t respond well to it and before vacation had dropped to less than 10 Oz a day and was supplementing with frozen df sf donor milk I was able to get. This was another reason I chose to wean on the trip, because I didn’t have enough milk to feed him on the trip and didn’t know how to transport the donor milk and have it last the whole week…) the week ended with me very stressed and syringe feeding him Pedialyte every hour to try to keep him hydrated until we could get back to OKC. My plan was to try one final option of a bottle of the donor milk and if he refused that, I would take him straight to the ER.
To my surprise he was more than happy to drink the donor milk when we arrived back home! I was releived! The only problem was that I had only about 100 Oz of milk in my freezer, so I needed to find a solution fast… I took him to the pediatrician and she gave us a form to get a hypoallergenic formula from wic.
While waiting to get the formula we first decided to try the goats milk again mixed with the donor milk to see if we could wean him over. To my surprise he actually drank it when we mixed 1 Oz of goat milk to 2 Oz of breastmilk. The bad part is that he reacted terrible to it!!! From just 2 Oz he had 8 terrible muccous diarrhea diapers in less than 2 hours…. so we stopped that and all symptoms cleared up quickly after.
We tried a few different types of formula of which he refused, and we’re finally given EleCare Vanilla for toddlers, and he thankfully really liked it! (It tastes like a vanilla milk shake) so we were able to wean him over to that and he’s been on it since.
Since then he has gone from the 2nd percentile up to about the 20th and has gained about 5 lbs in the last 6 months. He has only once eaten any form of dairy, and it was accidental. His reaction was vomiting and diarrhea for a few days after. He saw a GI Dr recently who said to wait until at least 2 to try to add milk in. Thankfully most kids with FPIES will outgrow it by the age of 4. I feel like he will be one to outgrow it soon too.
So that is the update on Alex. I will try to do more frequent posts in the near future and get this site up and running again. I have a lot of goals for the new year and will probably do another post either later today or tomorrow and talk about that.
Thank you for reading my posts, and I’m excited to get to share our lives with you all again!