The Black Market

The formula black market. Yep, that’s right. It’s not something that’s talked about much, but it exists for many of us. Our state has a program for low to no income families that will provide formula at no cost. California has not made it mandatory for insurance companies to provide coverage for prescription formula, so of course, they don’t. I should correct that; our insurance company will cover Carter’s formula, but only if he’s tube fed.  So what options does that leave us? We are a single income family with 3 children, one of whom needs $800 a month in formula to survive.  We can’t buy this formula at the store. It has to come from a pharmacy or directly from the company. We also can’t afford to spend nearly 1000 every month for formula. So what have we done? We’ve bought it from the cheapest seller, which is usually off of E-bay. Where do they get it? I don’t know and I never asked.  We got one shipment from a seller on E-bay and all the cans were marked with a “Thank you for shopping at Kroger’s” sticker. I am sure that at $27 a can, this person did not just have 24 extra cans lying around.

I was also told that there are people who qualify for the formula assistance, request these special formulas and then re-sell them. Money straight in their pockets!! I never would have equated formula with illegal drugs, until I drove 3 hours to buy 10 cases of formula out of a woman’s garage. I paid $150 for 10 cases, which is less than the price of one case. And that’s not even the worst of it. The formula was expired. It was only a month expired, but I still fed it to my son. I fed my son expired formula because someone somewhere thinks my son needs to refuse to eat, drop drastically in weight and reach the point where inserting a tube into my child’s nose or directly into his stomach is the only way to keep him alive, before they agree to pay for his life-sustaining formula.

I do not understand the logic of it, or the fight that we are in now to try to get our supplemental insurance to reimburse us for the cost of Carter’s formula. And then I remind myself of how lucky we are to have insurance. We have found ways to keep our little boy thriving. We have pushed through. But this is not a short term battle. Carter will need this formula for years, and we will continue to trade in the formula black market.

New Jersey . . . 9 Doctors later.

New Jersey was certainly a whirlwind. We flew out on Wednesday and came home on Friday. My biggest worry was how Carter would do on the airplane. We had a 45 minute flight and then a 6 hour flight. That’s a long time for anyone to sit in a plane, especially an almost 2 year old. I’m not bragging or anything . . . But he was amazing!! He LOVED being in the airplane. He didn’t throw a single tantrum about being confined to our laps and giggled through take off. He slept wonderfully and truly enjoyed the experience. When we woke up Saturday morning, Carter looked at me and said, “Mommy, Airplane?” I told him that, no, we were not going on an airplane today. He hung his little head and said, “Ohhhh”. I think we may have established a life long love for airplanes. I am so proud of him.

The doctor we saw was fully of experience and education, although she was short on time. They are now scheduling all FPIES appointments in the morning, but ours was made before this change and it was at 1pm. We didn’t get to spend much time talking to her, but she was able to put much of his story together from past cases. It was nice that the things we told her were things she had seen before. She is the first doctor in the 9 that we have seen, who has taken his lack of food digestion seriously. She gave us a sample of Creon, which is a digestive enzyme used in Cystic fibrosis patients. She suspects that Carter is lacking adequate enzymes made by the pancreas to help digest his foods. She also agreed that he is probably getting all of his nutrients from the formula and not from food. We were also told to start a probiotic, which we will begin today. Hopefully this will help balance out his gut and then we may be able to start passing foods again!

I asked about the respiratory reactions that we see in Carter and, although she has seen this in other patients, there is nothing that we can do for it other than treat the symptoms as they present. I have to remind myself that Carter is part of a very small, very rare group of children who are just bringing all of these issues to light in the medical community. They will not have answers yet, but they are acknowledging our struggles and one day, this will help so many other children.  One day there will be an answer for his reactions.

Dr. J and I have already been in touch via e-mail and she was wonderful and thorough in her response. I am glad that we made the trek to get another expert on our side. But not the waiting begins. It will take a month to get the test results back, and hopefully these results will shine some light on the maze and help us find the best path the take to heal Carter.

Pictures of Our Cruise

Our Cruise to Mexcio in Pictures

Our Three Little Wonders Getting Ready for a Night Out on the Cruise!

Getting a haircut on the Crusie! Gotta look handsome for the ladies!

Hello Ladies!

Tyler and Caleb Munching on some SUSHI

Daddy and Carter at Dinner

Mmmmmm, I like Jucie Boxes!

                                                              Strawberries. Thanks Dad!

                                                    Look, I can do it myself! Sweet Potatoes.

What's for dessert? Why, a packet of sugar, of course!

Ooooooo, more sugar!

We had a great time!

Our New Home

Lucile Packard Children’s Hospital, our new home.  It has been almost a year since Carter’s reaction to soy led us into this FPIES maze. He is now 22 months old. We have seen so many doctors and Carter has endured so much on the search for some answers.  Yesterday we had our appointment with Dr. N, who specializes in FPIES. It was our last real hope to find a treating physician to have on Carter’s team.  We left our appointment yesterday with an actual FPIES diagnosis that is in his medical chart!! It has taken so long to find someone who can really help us through this maze, but it has been worth it all!

Our new hero, Dr. N, listened intently as I told Carter’s story yet again. She never once doubted my words; instead she reaffirmed everything I had seen. When I told her about his reactions to meat due to the animal feed, she readily agreed due to the severity of his reactions and even understood the difficulty in finding soy free meats. When I told her about the respiratory distress he gets when exposed to soy, she actually believed me. At every turn, I waited for the “Well that’s very unlikely” or “I’m sure you were seeing something else” or “Those symptoms must be due to something else” but she never uttered a single word of doubt. And for the first time since this whole ordeal began, I actually had a doctor commend me on what a great job I have done to keep Carter healthy, thriving and growing.

It seems all the hard work has paid off. We now have a plan: No new food trails at all (less stress for me, trying to figure out what to try to feed him next) We will do an in hospital food trail in 8 months when Carter is around 30 months old. It will be with a food that he reacted to, but not one of his violent reactions. She said that by 30 months, most kids make a turn and begin handling proteins better. She is a little concerned that this may not be the case for Carter since he has had reactions to very low protein foods such as oranges and honeydew melon.  We are to update her weekly on his overall status and we have been given both her e-mail and cell phone number.  So for now we try to find a way to get him to drink the elemental formula (we got samples too) and we will see her again in a month.

She said that she has 10 FPIES patients and the other hospital she works with, Mount. Sinai, has 18. It is a rare chronic illness, but now I feel like there is someone standing over me, holding a huge flashlight and illuminating this maze so that we can find our way out.

What did I do today?

I found this poem today and knew I had to share it with you! This for all of us who work tirelessly for our children and our families, sometimes with little to show at the end of the day. A big hug especially to all those cloth diapering mommas!!

What Did I Do Today?

                                                                

Today I left some dishes dirty

The bed got made around 3:30

The diapers soaked a little longer

The odor grew a little stronger

The crumbs I spilled the day before

Are staring at me from the floor

The fingerprints there on the wall

                                                   Will likely be there still next fall

The dirty streaks on those windowpanes

Will still be there next time it rains

Shame on you, you sit and say,

Just what did you do all day?

I held a baby till he slept

I held a toddler while he wept

I played a game of hide and seek

I squeezed a toy so it would squeak

I pulled a wagon, sang a song

Taught a child right from wrong

What did I do this whole day through?

Not much that shows , I guess that’s true

Unless you think that what I’ve done

Might be important to someone

With deep blue eyes and soft blonde hair

If that’s true, I’ve done my share.

~Author Unknown

Acceptance

“God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, And wisdom to know the difference.”

Acceptance. I struggle with it every day, and just when I seem to have a grasp on the situation, I find myself stumbling around in the darkness once again. Have I truly accepted Carter’s dietary limitations? Have I accepted the fact that this day – to – day is mine, for better or worse, forever? Have I truly learned the difference between what I want and what I need?

Last night we had a great family dinner at our house celebrating the birth of our newest niece.  It was a great time! We moved Carter to the kitchen island to eat so there was no worry about accidental ingestion. We even made him some Carter safe Chex mix: 3 Corn chex, 3 T. safflower oil, ½ t. salt, ½ t. garlic, ½ t. onion powder and a ¼ t. paprika. Carter loved it! He probably ate about a cup of it. He was running around and having a really normal time. I was so happy watching him play like all the other kids.

Shortly after we put him to bed, the coughing started. It was that horrible wet, drowning cough. I went in and gave him his inhaler in hopes that it would settle the cough. When I picked him up out of bed, he couldn’t hold his head up. It was like watching a newborn baby with no neck control. When he did open his eyes, it was only to watch them roll back in his head.  I sat with him in the rocker until the cough stopped and his breathing grew steady and even. I was praying that this wasn’t the start of a reaction, but my mommy instinct knew better. I laid him back down and tiptoed out of his room. All was quite for about 10 minutes until the cough started again, but now it was something more. I ran upstairs to find him laying in his own vomit, too weak to move. His breathing was fast and erratic.  I got him out of bed and his eyes were totally unresponsive. I waved my hand in front of his face and it was like he was seeing right through me.

So he was having a reaction, and there was nothing I could do for him. I cleaned him up, took off his jammies and brought him downstairs. My husband and I watched as his mood went from lethargic and unresponsive to overly hyperactive and obsessive. He was running around the living room at full speed, talking non-stop. His breathing was still really fast and he was shaking all over. We picked him up, put some new jammies on and tried to calm him down. All he could talk about was the cat. It was the same sentence over and over again. The same actions, the same tone of voice. He would pat our arm several times, point to the cat and say “Kitty, kitty”. It began to get a little unnerving. It was like someone had turned his power button all the way up and he had no way of turning it down.

After a while, he started to get a look of panic and fear on his face, “Mommy, what’s happening? Help me.” He switched from a manic up to a sadden low. Now he was crying and scared. All of this lasted for over 3 hours. It was nearing 10:30, so I decided to try and put him back to bed. It was then that I realized that his beloved blankie was covered in throw up. I knew that without it he would never sleep. It was going to be a long night for sure. I laid him down in bed and went to throw the blanket in the washer.  By the time I got the blanket rinsed off and in the washer, he was asleep. I do not know that it was sleep as much as a collapse into unconsciousness. He slept the whole night, not waking until 8am this morning.

I look now, at the recipe for his Chex Mix, and it shakes me. It is unsettling to think that the small amount of spices he had, whichever one it was, caused such a scary reaction. I cannot pinpoint exactly which it was, but figure that it must be from the mix. Nothing else makes sense.  

So today I am learning to accept that there are things that are going to happen to Carter that are out of my control. I am facing the reality that I can’t really be too overly protective about the foods Carter eats. I had hoped those spices would be safe, since he had them before we even knew about FPIES. I cannot say for sure what he reacted to, but it is the only thing that I can make a connection to, but it is one I wish I didn’t know. It is another dead end in this maze, one that reminds me how serious and REAL this illness really is, and that I must accept that I have to do what it best for Carter, always.

Jealousy and the Diaper Bag

It’s a nasty word. No one likes to say it. No one likes to feel it and certainly, no one likes to talk about it. But, all the same, it’s there, green as ever, just waiting for It’s next victim. I figured it was time to talk about it because I know so many of us out there are feeling the same thing. Jealousy.  Envy.  Although we seldom talk about them, these feelings are part of the FPIES package, of any chronic illness. Most of the time, I ignore these feelings when I feel them bubbling up inside of me, but every once in a while I give in, and today is one of those days.

Something set me off today, a small something really. It’s actually very silly, but it’s just shown how different my life is now. I have been shopping for a new diaper bag, a bag that will allow me to take my entire house with me. Ok, not really! But a bag that will let me bring a full day’s worth of formula, 3 meals, snacks, 8 diapers, wipes, diaper cream, sippy cup, juice, inhaler, epi-pen, 2 changes of clothes, burp rag, and hold all of my stuff as well. Oh, I’m sure I’m forgetting some things too! Carter is 20 months old and I carry more for him now than I did when he was 2 months old. By now I should be downsizing to some cute, little functional bag that just held the necessities. Instead, I am trying to convince myself to spend $100 on a diaper bag to hold Carter’s supplies, which are his necessities.

I left the house once, without packing for the day and found myself stranded without enough diapers and no food for him to eat for dinner, simply because our plans ran a little over schedule.  I was reading reviews for the bag I am contemplating and so many of them talked about how this bag was too big and all they needed for their toddler was a zip lock bag to hold the necessities, because of course, as your child gets older, they need fewer things.

Carter is the exact opposite! As he has gotten older, he needs more things. I can’t just swing by the store or order off the menu to provide him with the food he needs. So yes, I am jealous of those moms who get to lighten their load as their little one gets older.  Do I like feeling this way, No. But it is a part of going through this evil disorder.  There are days when I’m sure I have it all together, until I see a child sharing some ice cream with their dad. Will that be Carter some day? It is impossible not to have those moments of envy for those parents who are dealing with “normal” toddler issues.

I know there are people who say that these feelings are wrong or unhealthy, but I must disagree. As parents, we spend all day, every day and sometimes even in our dreams, creating a safe, healthy environment for our children, checking and double checking food labels, vacuuming crumbs and scrubbing tables, sanitizing dishes and clothes, inventing new ways to eat the same food, scrutinizing every hiccup, wince, whine and tear, offering up every ounce of ourselves for FPIES to consume and realizing as we lay in bed at the end of the day, that we have nothing left for ourselves.  

So yes, there are days where I wish we were just dealing with tantrums and tempers, potty training and sharing, colds and clinginess. Times when I wish the terrible two’s were my biggest worries. As I wirte this, I think of my little boy, who is only eating Corn, Strawberries, Blueberries, Raisins, Apples, Sweet Potato and White Potato (Even that is a feat, compared to some of the other FPIES kiddos) And he’s happy!! He’s laughing and giggling and talking, I haven’t heard these sweet noises in over 2 months. His face is pink and chubby. His diapers are normal. He plays by himself. He sleeps all night long. How am I supposed to take that all away from him? If I trail a new food, that’s just what I risk doing. And I can’t just do it for a day or two. His reactions are a build up, so I have to subject him to weeks of a food that may ultimately fail. If it’s a fail, I will lose this little boy and it will take weeks before he comes back.  His language skills are already behind due to his reactions, and I risk pushing him further behind.

I will say this once and for all, Jealous and Envy play a big part in an FPIES parent’s lives, but it will not diminish our strength or courage to keep pushing through. It is just another dead end in this mysterious maze.