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….

 

 

Advertisements

Mayo Clinic and VENT to Ignorant people

So we got appointments in the Mayo Clinic, and made the three day drive up to Minnesota. We stopped in the twin cities to see friends and family and surprise my cousin for her wedding. After all I didn’t know how to thank her for setting all of this up for us.

We went to around three to five doctors a day for 10 days. Michael had his maximum amount of blood drawn for 6 of those days. Michael had urine testing, an MRI, a lumbar puncture and an endoscopy and colonoscopy. All to find out that he has FPIES, there was talk about Michael being worse off than children with FPIES, so we tested him for everything possible and thank the Lord he only has FPIES and not something worse.

Though the Neurologist is very concerned about his tip toeing and his mood due to his seizure from the new label Neocate production, he claims there’s not much to do unless Michael get’s worse at night. So we will be watching him for the next week and taking videos. We are also waiting on some more Mitochondrial testing to come back, so far it has all been negative. We were hoping to find something that we could treat.

For now we are to continue to trial new foods, to hopefully find enough safe foods by the time the formula runs out. The company is unwilling to fix the problem even though they admit that it does smell, taste, feel and mix different. They claim that there has been no change. When really we all know there has been. The important thing to keep in mind about the Neocate problem is that it’s not just children with FPIES reacting, there are children with GP, Allergy, MCAD, and many more things. We are not alone in this fight. Even though I hate people knowing who I am as I enjoy being a small town mother I had to step up and be these children’s voices, they need to be heard! LOUD AND CLEAR AND I CAN DO THAT!

Michael is so happy to be home, and sleep in his own bed and have all of his toys around the house. And though I am stressed because I don’t know what we are going to do, I know that God is watching out for us. I know that my son was born for a reason just like all of these other children to be somebody and let the world know something, I just don’t know what it is. Hopefully some type of a wake up call on all of the medications people take and the medications on top of those to help with side effects, and all of the things they put into our foods now days. No Michael doesn’t get GMO foods, but maybe decades of eating these worsening foods is what causes children like him. WAKE UP WORLD!

Also it has come to my attention that people think we are scamming, or that it’s not a rare disease. I would like you all to know that I am fighting for my sons life ant that if this were about money I would have started legal matters against the company, but instead I have just been crying for them and begging for them to fix it! FPIES is very rare, not as rare as five years ago but still very rare, and there are NO treatments except avoiding your trigger foods, well I haven’t even listed all of them but as you can see we have a lot.

And my son does drink from a bottle, but his teeth (thank you for your concern) are healthier than other 3 year olds because that’s all he gets is Neocate and Water, not junk food of acidic foods that could hurt his teeth. Also please if you would like you drink this from a cup and then from a bottle and see how the bottle masks its flavor. To add to that we like to see how much true intake Michael gets in a day as we try our best to keep his weight up because every time he reacts he looses 5 pounds like it’s nothing. And he uses a stage two dr. Browns nipple, he can’t even tolerate the larger ones. So please stop saying things like “those parents are lazy, and they don’t even make nipples large enough for a kid that size”. You have no idea how much I work at keeping my son healthy, I have not once slept through the night and my son is three and a half, I have not once had a night just to ourselves, we have not once gotten to go out to a restraint just to enjoy food, and we don’t go through drive through like you to eat in our car, as our cars are food free zones. My life is different because of Michael and his allergies, but I would not take one day of it back as he is my whole world and even when he is sicker than sick because we let him eat a food, puking on me having ten explosive diarrheas, screaming and crying for three days straight, I look at him and see this miracle that the Lord has given me. This child that has made me a better person, and has taught me not to judge. I wish for you all to spend one day with Michael and see how pure he is even if you are rude and mean to him, he still smiles at you.

To everyone who has supported us, I can not thank you enough I am sorry for my rant but these people need to know that I am in no way LAZY. You who have helped us have made our days easier, I wish there was better news I was telling you like we had that Ah, hah moment we were looking for, but we didn’t. Please continue to give advice, and continue to pray for Michael, and keep us in your thoughts. It makes me feel better knowing that people are thinking good things about us and not posting about my son drinking from a bottle, it’s like really? Who cares? His doctors don’t and we like him drinking it because if not he’s going to be tube fed and will have nothing by mouth, imagine what that can do to a child who is used to drinking his only source of nutrition, taking that away from him would be punishment.

Please continue to support us and know that I do appreciate all the nice things people have said, and all the advice even if it doesn’t work it shows you are trying to help, and I really appreciate that.

So THANK YOU FROM THE BOTTOM OF MY HEART!

-Jennifer Gonzalez

 

so many things I wish to say back to rude comments but I just don’t have time to waste, so like your mommy always said, “If you don’t have anything nice to say, don’t say anything at all.” 🙂

UNanswered prayers

So we have been up at the Mayo Clinic now for almost two weeks. We are about to start trialing the new updeated neocate label, though we are sure he will react to it just like he does anything made after May 01 2012. If you ask me what I want, I just want the company to admit that they did make a change and tell us they will continue to make these children their safe cans. I hate that the company keeps saying 15, when Steven was in my house he said 18, It’s odd though becuase I know 27. So 15 isn’t 15 it’s probably more like 100. Especially because I don’t know alot of people and I havent gotten my word our to many others. I stay strong through all of this, but if they don’t change it back or continue to make their safe formula then my son and other children will die. THIS IS NOT OKAY, MAN UP AND ADMIT YOU CHANGED IT, AND CHANGE IT BACK IF EVEN JUST FOR THESE CHILDREN. What is wrong with you? It’s bad enough my son can only tolerate one food, now you are changing it to make a product cost cut? You could have just asked us to pay more, we would in a heart beat.

This is not the end you will hear from me, I WILL NOT STOP UNTIL WE HAVE ANSWERS. It’s time to step forward and be honest before you are proven dishonest, then who will trust you, lots of people will go to your competitors….We will stand strong!

Neocate changed in MAY 01 2012, and PEOPLE NEED TO KNOW THAT if their children are all of a suddenly getting sick that’s why!!!!