Life with FPIES

What is it like to live with FPIES? Well I can’t tell you anything except the mothers perspective, my son would tell you that he doesn’t know any different and that he just wants to eat normal food with the rest of the world.

Lets start from birth…. Michael was born full term but was only 4lb4oz, so right away the hospital wanted us to supplement my breast milk with milk formula. He wouldn’t drink more than 1/2 oz and was being fed every three hours. For some reason even less than a week old he knew something was wrong…..but I didn’t. I did everything the Doctors told me to do. I rocked him, I bundled him up, I did my shake/walk, I turned the dryer on to give him noise, we tried the radio, I tried a car ride, I tried it all. After a couple weeks of his horrible stools his bum was now chemically burned. So our Doctor at the time told us to spray dumboric acid on it (yes for athletes foot) and that the acid would neutralize the burn….He was by far WRONG! So after being told that it’s colic while I was calling them day in and day out we decided to get another opinion. This doctor told us about our “miracle cream” that we still use to this day during a reaction. He explained that he doesn’t know what it could be besides colic but that he does think something else is going on. To keep a diary of the times of day he was crying….

Well he was crying for almost 20 hours a day, I felt hopeless. Nothing I did seemed to make him any better, but I kept trying anyways. I walked with him, I watched him, I bounced him so gently, I did the bicycle move with his legs…..I just kept trying.

At almost two months old he had actually cried so much that he coughed up blood….my husband was in the shower as he just got home from a fire. I ran Michael in to him and said Thomas what do we do?!?! Of course I knew to bring him to the ER but do we drive or do we wait for an ambulance to arrive to bring him in? I can get there faster and the bleeding had stopped. Thomas first thought (just as I would have I guess) did you drop him? I looked at him like I was going to hurt him (must be where I got my now famous mom look from) and said no, he was crying, and he stopped for a second…..next thing I knew there was blood coming from his mouth and here look I have it on my shirt. So we brought him to the hospital where he was then admitted for his first time.

The GI doctor came in and told us that he had cried so much he actually broke a blood vessel in his throat and that is where the blood cam from, but that he also has blood in his stool. She said that he is allergic to milk and that most children allergic to milk protein are also allergic to soy. So she placed him on nutramigen, we thought that was expensive at fist look, but we went to babies r us and bought as many cans that we could afford to get us through for about two weeks. He was better for the first 3 days then started to cry like he used to. When I look back at pictures for all of this time frame I can see how swollen and sick he looked…..but I didn’t know better, and neither did his doctors.

So then at our doctor appointment. the 4th one that week our GI put him on Neocate Infant and told us that our insurance should cover it or to get Medicaid. Well we didn’t qualify for Medicaid; as we made barely too much, and our insurance denied it as it’s not for an inborn error of metabolism. We made it work because it was better for Michael. He started to do amazing, was finally gaining weight, actually made it onto the growth charts around 4 months old, gained above the 3rd percentile around 6 months old and started to really thrive.

Michael didn’t get tummy time like most children, because just the thought of putting him on his tummy felt like cruel and unusual punishment. We did give him mylicon for his gas that seemed to help until later on he built up a reaction to that, come to find out there are fillers in medications…

We got Michael a bouncer because bouncing out his gas seemed to help….though he still wasn’t tall enough so we had to put a heavy duty couch pillow under it. He fell asleep for more than 30 minutes…..it was amazing.

Then right around 10-11 months old, Nutricia added DHA/ARA to their Infant. He started to react, we were again clueless. Then realized the DHA and ARA was new…..so his doctor switched him over to Neocate Junior Unflavored and he was better again.

During all of this his first GI said that if we put rice in his bottle he would sleep better and be happier…..she was wrong…he was swollen and sick and I told her. She assured me no one could be allergic to rice as it is hypoallergenic… and then started pushing us to try stage one baby foods. I feel as if maybe Michael wasn’t pushed so hard so young on all these things that he wouldn’t be allergic to as many things, though that’s just a theory.

Around age 2 Michael realized that children should get to eat with their parents, and they should get a cake for their birthday…. Michael got a plastic cake that sang to him. So life was more complicated because he was starting to understand that everywhere has food. We are unable to eat out of the kitchen unless it’s on the dining room table and we clean the table and vacuum under the table and pick up any pieces left behind….We don’t eat in our car like most americans, so finger food is not really around in this house.

Around 2 1/2 Michael was diagnosed with FPIES, we were told that it’s not just multiple food protein allergies but that it’s FPIES. Wow we finally have a name!!! I had been researching this FPIES thing anyways curious and believing this is what he had.

By age 3 I had it all figured out, sure Michael still didn’t have a safe food….but he had his water and water can turn into ice. I shaved ice and made a Mickey cake! It was great! I put glow sticks inside that were pre broken for color! We had the family here and chopped it up on our table! It was amazing fun!

As much as family gets it and tries to understand it still goes over their head, and I don’t expect many people to understand the way I do, as I am the mother I have put hours upon hours into research. So much research that my sons doctor told me that’s what I should do, I should get my Ph.D. in medical research because I am great at it….I said nope I want to be a Nurse Practitioner and help children like Michael with rare diseases. I can make their life just a little more enjoyable….

Now Michael just turned 4 and we have his first safe food….HEMP! Say it loud and say it proud! We have a food!!!!!! I am jumping for joy!!!!! But his only safe food is now expired so we really need his sugar that we are trialing to be a pass, then we really need to find a vitamin. I will make Michael survive and I will not let him expire, or become so sick….I will not. I promised him that he would be okay and we would make it through this……and after all I am his mommy I am never to break a promise!

More later….

Today….the expiration date Nutricia tried to put on my sons life

Today is October 22nd, the expiration date of Michaels only complete food source. Since our learning of this back in November of last year we have found Hemp and Sugar….which brings us closer to a hope of keeping him healthy and happy. Michael is our brave super hero. Even though he has been through so very much in his 4 years he is still the sweetest little boy.

 

We have been in contact with the company since day one of our figuring out that the new label formula (that they claim nothing had changed with except the appearance of the label) and been in contact with our representatives and the FDA. The company states that nothing in their label released in August 2012 had changed but that their yet again new label starting in January of 2013 has in fact changed….maybe they are just learning to cover their hiney. The vice president Steven has been in our house and even for himself stated that the old label is whiter and tastes like potatoe water, that the new label is more yellow and tastes a little sweeter and does go rancid as we saw with the formula I made that sat out at room temperature, and that the new and improved label is more yellow and tastes just like regular milk you buy at the store. I know that the thing we would complain about is taste and that is why Michael will drink it out of a bottle instead of a cup like he does with water. So I know that’s why they made the change. I am sure profit has something to do with it as well.

Today hits hard because I am scared, yes I tell everyone I am fine, and we are getting through this, but deep down I am so scared that we are going to loose our son and I can’t do that….I can’t let that happen. I will fight and be their voice and try to find answers.

I have found strength in some fantastic FPIES moms with the FPIES Foundation, it makes you feel like family, their support is amazing.

We are struggling with medical debt, have maxed out our credit card, had to get another credit card, are eating boxed meals for Thomas and I just to be able to supply Michaels diapers, and food trials and all of our bills. Please help us with prayers and kind words. Ignorant word don’t hurt me anymore it just makes you look ignorant.

My life is better because of Michael, and Michael has touched the hearts of everyone he has met along this journey, local people, people in many other states, children, adults, doctors across the country. Please know that we are doing out best to keep him alive, and I will continue to fight with everything I have.

more to come…

FPIES in my new LIGHT

We drove three days to the winter weather in hopes that we would get more help. The sad thing about FPIES is that doctors don’t really know that much about it, once diagnosed you are left in the dark for the most part. I found light in the FPIES Foundation. I was able to talk to one of the board members and even meet Joy in person while we were in Minnesota. Her son Sam has FPIES and is chronic like Michael. Sam and Michael got to enjoy a day together and Sam is now Michaels Forever Friend. When it comes to this foundation, they are able to reach out their hand and give advice. Good advice. They are a group of moms that are here to help support you with passionate words. They have helped me more than doctors have, when it comes to great ideas for food trials. Michael learned of hemp through her, and has passed his first food!

Michael isn’t the typical FPIES child, he doesn’t have multiple safe foods, he just has hemp and sugar now. There are more children like him, because of the foundation I have found others. I would love to meet these mothers in person and have a food friendly play date with our children, but we are all over the United States so we are online with each other 🙂

Michael has greatly improved in his speech since the start of Hemp, it seems he is a completely different child. The idea of this blog is to help increase awareness not only for Michael but for FPIES all together. If it weren’t for a fellow mothers blog http://fpiesmudpies.blogspot.com/ I wouldn’t have found true FPIES strength. I can’t begin to tell you how great it feels to be part of a FPIES family.

“The FPIES Foundation is working on several initiatives that help facilitate awareness to the allergy so that parents are empowered in learning about and caring for their child living with this rare food allergy, that all children affected by FPIES have adequate management and treatment guidelines with their interdisciplinary medical team, and that all symptoms along the spectrum of food protein induced gastrointestinal conditions (including chronic FPIES)are recognized and classified correctly so as to improve the standards of care and increase the quality of life of those affected by FPIES.”

We did another news story through Inside Edition, it should be on air soon. As soon as I find out I will let you all know. But people like myself need to have our stories heard. FPIES isn’t glam and glory like some make it out to be, FPIES changes your whole life. You can’t go to a store without worrying about your child getting a trigger food and having a reaction, we can’t go to the beach in sunny Florida because if he gets any water he goes into an awful reaction, you cant treat him to ice cream when he’s sick or a popsicle when he’s hot. You can’t even give your child medication without having it specially compounded for them, due to all of the fillers in medication now days. When getting ready to trial something you have to write the company and verify that there is no contamination of another food in the single ingredient food you are trialing. Michael is allergic to corn and that explains why in 8 ounces he is supposed to have 7 scoops and is only able to handle 2 scoops, due to that we may have failed more foods because his bucket was already full.

May parents have come up with a wonderful idea……We need companies to wake up and maybe a new company to be willing to create a special product. One where it starts with an amino acid mix for protein, and then you can choose a fat, a carb, vitamins….etc. Because children and adults can react to even trace amounts of protein. Once a protein even when washed out or baked, etc there is still trace amounts you can react to.  I am allergic to nuts, I can’t fly on southwest airlines because of peanut dust, I can’t have peanut oil because you claim the protein was removed, yet I STILL CAN”T BREATH! But I am lucky because you can pump me full of medications to make me survive my reaction. When it comes to FPIES there is NOTHING you can give them to stop a reaction from occurring. When I was given a drug called Prometrium (contains peanut oil) I ended up loosing a pregnancy. I didn’t react in my throat and mouth like normal because the coating wasn’t peanut related. But I had killer kidney and back pain about 5 hours later, and had stomach pain and horrible diarrhea for about 5 days following. I knew if my body was going through this small amount that Michael and other children must feel like this but much worse when eating a food that they react to.

FPIES is SERIOUS it is like anaphylaxis but of the gut, it causes severe pain and diarrhea along with vomiting to bile, it causes leg pain and mood changes. When Michael is reacting he covers his ears, he tip toes, he gets angry for no reason, he forgets things, he can even lose a milestone. This isn’t normally mentioned because it doesn’t happen with all children, but Michael looks like he has autism or ADHD when he is reacting.  He pinches me to convey to me how much pain he is in, and I let him because that’s his way of informing me. It’s not bad parenting it’s what we know. When he isn’t reacting he is your normal happy child. When he’s reacting we can be out getting our toilet paper at Target and out of no where a cramp happens and he cries, I get told my son is a brat and I need to punish him, he’s not acting out, he’s in PAIN. Our whole world has changed, we can’t snack on the couch or eat dinner at the dinner table, we sneak eat in the kitchen because he wants to eat and it breaks all of our hearts that he can’t. We can’t let him get crumbs. When we have people over for holidays we tell them to eat before they come because this house is not going to celebrate around food, its just too hard.

Michael now has a little brother Matthew, and we don’t see signs of FPIES but are keeping an eye on him (he was placed on an elemental formula from birth under doctor supervision). But with Michael even on Neocate Infant we had severe crying, and odd stool, along with other things. He still didn’t sleep like a “normal” child. Can I tell you how much I hate telling people that I think Matthew is normal….not like Michael? It hurts. Matthew sleeps and when he cries it’s because he either needs a diaper change, or a bottle, or just to be simply held. Then within 30 seconds there is no more crying, he’s sleeping right now, he’s always sleeping and when he’s up he smiles. He’s only a month old. This is unfamiliar to me because Michael cried 20+ hours a day. Michael wasn’t comforted by a snuggle or by getting his gas out, after he had a bottle he was super fussy, there was nothing I could do to get him to not cry. But I still tried, I walked around the house doing a little bounce step with him on my shoulder being cuddled in hopes that at least he would know I love him and am trying my best to help him. I would call for help just so I could get away from the scream cry for 5 minutes to keep my sanity. But then I would worry that something was going to happen. He puked all over everyone all the time and had blow out diapers that now my sister in law is scared to hold Matthew because he may be like Michael.

Michael reacts to Food, and even cross contamination of food, he reacts to medications, he reacts to soaps, lotions, EEG glue, that’s just through skin contact….his body is reactive, this is not a joking matter. When he’s reacting to a food, besides the diarrhea and vomiting and mood changes, his body swells, he looks pale and his eyes sink in, they are purple underneath, his eyes look lost, he can’t sit up without additional support, we have to carry him around the house or around a store, it’s not easy. This is ugly to imagine that’s why I don’t post pictures of him reacting,

People say this must be so hard….and I won’t lie it is very hard, but this is also all I know and all I will know. I just wish that someone out there could help these children, I wish that we had more answers but we don’t. And what I hate more than anything is FALSE HOPE. Don’t tell me you are researching to CURE FPIES, because we don’t even know what causes it, or how to treat it.

Think for a second about vitamin C….. I don’t know about you but I think of Oranges. That’s not true when in foods or vitamins it’s normally corn related. Maybe if America (not that its just America) would stop mass producing things and go back to the good old days where families actually farmed and things were more pure….people wouldn’t be so sick, it wouldn’t be so hard to find safe food for children like Michael.

 

 

But back to what’s needed, we need more people willing to talk about their stories, we need more FPEIS awareness, we need helping hands,  that includes a great community focused organization like The FPIES Foundation.

Thank you all…..more to come….

 

 

Stuck somewhere between here and there

We are still in a tough spot. The company doesn’t want to fulfill their roll of helping children like Michael have a safe food. They make false promises and give us all false hope. In the mean time Michael has found two foods hemp and sugar, This is NOT enough to keep him alive when the formula runs out and we all know that is fast approaching,. To all the people out there we still need your help and we are still trying to help others in need. I will be updating much later but as the days grow closer to the expiration my heart breaks more and more. Please keep spreading the word. Please we need your help.

Thanks and Love to all!