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….