Since we knew Elianna's formula was keeping her from getting completely better (to baseline), when we introduced almond milk we also lowered the amount of formula we were giving her to help make sure it was a successful pass. Once we determined it was safe, we went back to 100% formula and moved on to the next trial.
Over the next couple weeks there were a lot of complications, but I couldn't help feeling as if something was just a little not right, and after going back on to the formula 100% she was actually worse. I knew that when you remove a food trigger and then reintroduce it the symptoms could be worse or more immediate because T-cells can identify it faster. I kept shrugging it off, but then over the next three weeks, this added to a couple of other fails, and she just didn't get any better.
For the first time ever her weight started to decline very slightly, her respiratory symptoms were horrible, and we were even failing diaper cream on her butt. This was not boding well. We returned to the allergist who continued with the original instructions: pass almond milk and then transition her off the formula entirely. The concept that her intestines were not going to heal entirely, and that she may not pass any other foods while still on the corn based formula, was one that I could understand in my head. However, the idea of putting my 18 month old on a diet of home made almond milk, and a teaspoon or so of fruit at dinner, was not a very comforting thought. This had to be insane. But the plan was to move quickly and get other foods into her diet. For a child with sensory and food issues this was a lot to expect, and I was spending a lot of fearful time on my knees praying.
I waited until the following week when we went back to see the GI and the nutritionist, so that I could ask if this plan was as insane as I thought. Truly, could an 18 month old survive on only almond milk? Surely not. My mommy instincts were going through the roof. The GI tried to reassure me by saying that 80% of a child's calories between 12 and 24 months of age come from milk (ok but that is for kids who eat food right?), and the nutritionist said that it would be low in protein, so if I could trial and add hemp milk, then lamb, and a gummy multi-vitamin that he recommended, we would be good to go.
Wow. That seemed like a good plan, but a lot of steps to conquer. And could we do it quick enough to not be detrimental to her health? Again I was reassured that she has never had failure to thrive and definitely is in good enough condition to go a month without worrying that she isn't getting her daily recommended nutrition.
That certainly did not sit well with this mama. A month of transitioning off of the formula, and onto only home made almond milk, while trialling these other new foods? What if she failed one? What if she needed weeks to heal?
What about the fact that she was not healed to begin with and I listened to her cough up her lungs and wake up screaming for air every night?!?
I prayed, and I fretted, and I researched, and I consulted others that I could trust, and the answer was all the same: no one could tell me what the answer was, and the doctors were giving me what they felt to be the best answer. I called and spoke with the pediatrician who gave me an immediate referral to the top pediatric nutritionist at the local hospital, but it would take time to be processed and get in. How long?
The following week her symptoms of illness continued, and we decided to take the plunge. I began making almond milk, and we began the transition. And I was afraid.
I was afraid for her nutrition, I was afraid for a possible reaction once she was on that much almond milk, and I was afraid that if we had to go back to the formula we would not be able to.
Nichole, I have spent much time in prayer - asking always for wisdom. I was agonizing about what to do next...what to offer next and when to start. I had been praying on James 1:5-8 (God gives it without reproach but we must expect to recieve it). I have been waiting and waiting for God to show me what to do - to give me the wisdom I was asking for. Then the other day I "heard" him telling me that sometimes the wisdom he gives is for me to make a decision WITH discernment. He will bless that. FEAR NOT : )ReplyDelete
I completely understand your fears. My son has been severely under weight for most of his young life (he is only 20 months and finally weighs 20lbs). My son could not tolerate the neocate, I believe also due to corn. We have had GREAT sucess with a home made real food formula. It was given to me by a nutritionist in the hospital. If you like, check out my blog I believe under G-tube, I will try to see if I can make the post more obvious, or if you have a way, I could email it to you. I posted it, because it has saved my son's life and I use it every day to add calories to the little solids that he eats. It is 30/cal per oz give or take depending on what milk subsitute used. You can use the almond milk for the base, and leave out any ingredients that your son cannot tolerate yet. I hope that others can benifit from the formula and added nutrition and calories. the blog is imexpectingtheunexpected.blogspot.com
Of course, check with your doctor if you have any concerns, but as I said this was given to me by a certified nutritionist at Children's Hospital.
Nichole what wise words! I too have been working on the expecting to receive it part.ReplyDelete
Kristina....wow! So happy you found a solution and your nutritionist has been so amazing. I will check your blog immediately! Did you have to trial the ingredients initially? Did you build the formula or did you just introduce it all at once?
My son has been sick his entire life--for months I have fought for answers and to try to help him get well. All this time we have always thought he had a birth defect causing his swallowing, choking and aspiraton issues. Only just last week did a NEW GI doctor tell us he suspected Fpies. I have been using this formula ever since he was over one year and I used mostly hypoallergetic ingredients--because I had always suspected milk/soy intolerance--I added omega oils, apple cider vinegar, and milk free probiotics because of research I found that they help the gut and reduce inflammation. My son has lived on this formula ALONE because he could not eat solids for months because he could not swallow without choking. It was originally a G-tube feed but he loves to drink it by mouth now. So to answer your question--I am JUST NOW trialing foods as well as new liquids--I had NEVER heard of FPIES. I do need advise from you experienced Mom's about the food tials and elimination diet--no one here can really give me any help. I'd love to talk to you more--I really need some guidence. My email is Kristina.firstname.lastname@example.org
Thank you sooo much!
Kristina I sent you an email!ReplyDelete