Meet The PIC Team: Jackie

My name is Jackie. I am a single mother to three amazing kids; a 9 year old daughter and 6 and 2 year old sons. My youngest son was different from the start. He was the first full term baby I had, the first I was able to take home, and the first I was able to breastfeed. I began as a single mother with him, instead of having someone at home to help. I questioned my instincts and knowledge constantly. Within only a few days, I was struggling to keep up a supply and it seemed that he was just never satisfied. As the weeks went on, he was throwing up, refluxing, and just uncomfortable all the time. My previous two children had had issues with dairy as infants, so I did what I was taught and I gave up breastfeeding to trial formula.

Standard formula? Fail. Lactose Free formula? Fail. Soy formula? Fail. Sensitive formula? Fail. I was at a loss. Each one seemed a little better, then worse. He was referred to a GI doctor and diagnosed as having being either allergic to milk and soy or MSPI and severe GERD; two conditions which still, to this day rule his life. He was placed on a hypoallergenic, prescribed formula (Neocate) along with medications. This certainly improved things, and he continued to grow as he was supposed to, despite continued uncomfortableness. At a year of age, he was finally allergy tested (skin pricks)... low and behold, it showed NO reaction to milk! That confirmed that he was at very least MPI - or a milk protein intolerance, as he does not tolerate it, despite being "not" allergic and a confirmed allergy for soy.

Fast forward to 2.5 years old... and his allergies have only worsened. He still does not show a confirmed allergy to milk, but reacts very obviously to it. He has added at least 25 other allergic foods to his list, and was recently diagnosed as having Eosiniphillic Esophogitus. Most of his allergic reactions are delayed, and only show up on patch testing or with trial and error, something that is not easy to put a child with such bad experiences through. He has ended up developing so much pain and continuing reflux problems that he refuses even his formula, the one safe thing he has had his entire life... and is now exclusively fed via a Gastronomy Tube placed in his stomach.

Dealing with allergies at all can be frustrating. Dealing with invisible conditions, once that not all traditional tests can confirm can be even more frustrating. Working with the other amazing mothers through the PIC Foundation has helped me identify some of the problems so that I could either understand other experiences or have a clearer idea of what to speak with his team of specialists about. I am happy to share my experiences with others that are struggling; as we have truly shown that these conditions span such a broad base. All of our children have ended up in different positions or with different overlying problems if not healed from their problems, and we each offer a different perspective and experience

Birthday Month - My Little boy turns 1, with a Protein Intolerance, a personal experience shared by Beth

March 2 - One year check up.  We talk about his development and vaccines, but mainly we talk about food. What foods he can eat.  What foods he can't eat.  What is the food game plan for the next year, that is to continue formula or not to continue formula? We decided to continue formula, and I get a letter of medical necessity from his doctor, and the first official diagnosis of MFPI.
(I have literally changed my mind about continuing formula about 100 times in the last few days.  I want to be done with the formula so bad, to have some normalcy, but I want his nutritional needs to be met! Reading an article about how bad it is for a toddler to be on a vegan diet swung me over to the side to keep him on the formula.  That now is such an important time to make sure his nutritional needs are being met, for development.  But, how do we keep paying for this formula?)

March 5 - Jaiden refused his bottle/formula

March 6 - Called the insurance company to see where we were at with formula coverage.  We sent in our first receipt in January and have yet to hear if they are going to cover the cost. The person on the phone had no clue.  Then after some time she did find our paper work, but of course we filled out the wrong form (even though it was the form that they mailed us), so it took 3 extra weeks for it to process.  But it was finally sent to review on February 27th, and we would have to wait 30 days before we heard anything.  I also found out that each time we ordered formula it would be up for review, and not necessarily covered every time.  I was on the phone with them for over an hour, and basically got nowhere.

In the mean time, we are debating if we can afford to keep him on this formula.  We are waiting to see if it is covered, or if I have to start finding ways to sneak in protein, calories, and fat into his diet.  The stress of trying to figure out how to do that, or even if I can, is overwhelming.  So for now we just wait.

March 7 - Jaiden is still refusing his bottle, and won't even drink it from a sippy cup.   I decided to order the splash, and maybe we can just give him one every other day, just for an extra boost.  That way the stress isn't all on me to make sure he is getting enough of what he needs every day.  I order the splash, and sit down to turn the receipt into the insurance company.  This time I attach the letter of medical necessity, information from the dietician, a personal letter from myself, and all of his past medical records showing hospitalizations due to the intolerance.  This takes me over an hour.

March 8 - Discover that one of Jaiden's caregivers  gave him peas for lunch.  Jaiden is allergic to peas.  Despite all my best efforts to prevent this from happening, it happened.  But not only did it happen once, but it has happened several times over the last two months.  So all of the "failed" food trials, might not have been fails.  He could have been reacting to the peas.  I have to do the last two months all over again. I just want to sit and cry.....again.

Jaiden is still refusing the formula

March 9 - Found a mom online who is selling Necoate Splash for just the cost of shipping.  She has 15 cases for about $128.  It's like buy one get 14 free.  How can I pass up this deal? 255 boxes.  255 days where I don't have to worry about meeting every single one of his nutritional needs.  255 days where I know he is getting the protein that he needs to grow. But, if I spend that money and we get insurance coverage, then I am out $128.  If we don't get insurance coverage, then I am out on a great deal and on a sanity savor.  What to do?

Spent the day stocking up the freezer - squash,  pears, and broccoli soup.  Ran the dishwasher 4 times to make all this.  It took most of the day.

March 10 - Talked to the mom who had all the splash.  She only has 4 cases left.  She is going to hold onto them for me for two weeks.  I need to find out by then if we have coverage.  If not, I need to come up with $64 to buy those four cases by the 23rd.  How am I going to do that? Looked online to see if anything was posted about insurance coverage yet - nothing.
Cooked more foods for Jaiden - Turkey rice vegetable soup and apples

March 11 - Jaiden is still refusing the formula.  The splash gets here tomorrow.  I cannot wait! I have been trying to sneak formula into his coconut milk, but I know he is only getting so much.  I made one more batch of food for him, and have yet one to go.  I know that I will have to do the same thing in 2 weeks, only this time with muffins.

Jaiden reacted to the peas today, mucous poop, fussy most of the day.  It made for a long day!
So far, this is not exactly what I had in mind for his birthday month....

March 13 - After an entire weekend of cooking, I make 35 birthday treats for Jo to bring to school.

March 15- Find out today that formula is covered and the first check is in the mail. I email the mother from online and tell her I do not need those cases of Splash and thank her for holding them for me.

March 16 - Family Birthday Party.  We order dinner, a fish fry.  But of course have to make a separate meal for Jaiden. That morning, I made two separate cakes.  One for Jo, which is beautifully decorated.  And cupcakes for Jaiden, which look so sad next to Jo's cake.  He wouldn't even eat his. :( I tried to ignore the fact that Jo got such a great cake, and Jaidens, well to be honest, was just horrible.

March 17 - Birthday Party at Mcdonads. All the kids gather around and eat their meals, while Jaiden is left to eat his fruit and veggies.  He seems happy, he is not old enough to notice yet.  All the kids get ice cream for a birthday treat, Jaiden gets an allergy friendly cookie.  He loves them.

March 18th - St. Patricks day parade.  The day begins by preparing and packing enough safe foods to get us through the whole day.  I buy the whole family sherbet.  I checked with the stand to see the list of ingredients.  Surprisingly he had the ingredients for each flavor, and only one flavor had soy in it. However, he used the same scoop for each flavor, can I risk the cross-contamination? The answer is no.  I bring the sherbet back over to the kids.  Jaiden cries because he wants some.  I just  throw mine away.

March 22- Jaidens actual birthday - Allow him to taste some chocolate coconut milk ice-cream.  He seems to really like it.

March 24 - We finally break down and buy a deep freezer because we are running out of room in our regular freezer for all his homemade foods.
He reacts to the coconut milk ice cream.

March 25 - Today I made 5 dozen muffins, each a different flavor: blueberry, apple, pumpkin, chocolate, and banana.  I completely made up the apple and chocolate recipe and they turn out great!

March 28 - Try to make homemade chocolate candy for Jaiden for Easter.  It turns out awful.  What am I going to put in his Easter Basket?

March 30 - Corn trial begins.