My heart is breaking

Since our diagnosis my heart has been very heavy. This is hard to handle, knowing that Michael is 1 of 71 people diagnosed with the disease makes it so rare, it’s insane. But knowing that a bone marrow transplant may help prolong and make his life easier has helped me to gain strength. Because at the end of the day I will do everything I can to help him lead an easier life. I am his mom, I am his support. I couldn’t do it without our support. We have moms that help me stay strong and help guide us along this path. (FPIES moms) We have family who help us when we are really low.

It makes me feel bad to ask people for money, but at the end of the day there is no way we can make enough to help sweet Michael.

Please pray for a Miracle. Please pray for the help we need.

More later.

A new diagnosis…..

When you hear the words Mitochondrial Disease your heart drops to your feet. It is like hearing your son has a cancer than is not treatable. For Mitochondrial Neurogastrointestinal Encephalopathy there is no treatment except to treat symptoms. Treat pain with pain medication, get a wheel chair when they lose their ability to walk, get hearing aids when they can no longer hear, have therapy the rest of your life, and know that you are lucky to live to 30 years old. Well with Michael if his brother is a correct match and doesn’t have either gene that he inherited from us, with a bone marrow transplant Michael may live a longer more “normal” life.

Michael is living on hemp hearts and sugar. We have found out that one of Michaels main reactors is corn and with Mitochondrial that makes sense as his mitochondria are just too tired to digest carbohydrates and corn is hard to digest. I have learned so much from wonderful moms on our journey, but I am asking everyone for help www.youcaring.com/savelittlemichael as we can not afford this on our own. Thomas and I had Michael as newly weds, we wanted to have children young and we felt ready. Neither one of us knew that we were carriers of bad genes as neither one of us had any major medical issue. We have come together stronger to help our son Michael fight. Starting two years ago I prayed daily for a miracle, part of me thinks that Matthew is Michaels miracle. Matthews cord blood could save Michael. I could have two happy, healthy boys.

There is so much going through my head, and the hardest part about all of this is that we finally found out the week before Thanksgiving. A time to be happy and thankful with family, instead of the typical cooking all day to sit around and eat all day, I blew it off. I didn’t cook anything, in fact my father-in-laws wife dropped off food for us to sneak-eat in the kitchen. We gave thanks that we have our little boy and that we still have enough courage to fight for his life. I saw this coming, ever since we got his genetic profile, just wasn’t sure that both of us had given him the gene. We did, and I feel awful, but I would have Michael all over again.

Michael opens up peoples hearts, he makes you smile even if you are a grumpy man standing in line in the biggest rush of your life. He just does something cute that makes you smile. He calls everyone pretty and thinks that everyone is good. People flock to his smile and say his laugh is contagious. He is my whole world and I love him, this is my letter to the world begging you all to help me save my sons life.

MNGIE is not kind, so let’s fight hard!

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….

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….

 

 

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.” 🙂

SAVE MY SON_I BEG YOU

Save Little Michael

                I am writing to you about our problem at hand. Our son Michael has been on Neocate Junior Unflavored an Amino Acid-Based Medical Food since he was three months old. We are not sure what is wrong with him medically except he has Food Protein Induced Enterocolitis Syndrome.  Michael reacts to ANY food. We have trialed: Rice, Peas, carrots, sweet Potato, oatmeal, apples, bananas, Pears, prunes, squash, blueberries, raspberries, apple juice, orange juice, saltine crackers, oyster crackers, rice cookies, rice wafers, croutons, tomato, potato, cheerios, froot loops, green beans, white bread, wheat bread, egg, cucumber, popsicles, Gatorade, chicken, bacon, milk, cheese, noodles, rice noodles, cheez it, corn, hamburger, fruit chews, lollipops, macaroni and cheese,  black olives, tea, unfiltered water,  Elecare Infant, Elecare Junior, Neocate Infant, Neocate Infant with DHA and ARA, Neocate Junior with Prebiotics, Neocate tropical, Enfamil, Eo28 Splash, French fry, amoxicillin, Benadryl, mylicon, Tylenol, Ibuprofen, Soy formula, goat milk, etc.

Michael at the park

So yesterday, Michael wanted me to bring him to the park as the last thing

Not Alone

To Whom This May Concern: Letters from other mothers

Neocate Problem

Jennifer & Thomas Gonzalez

Son: Michael Gonzalez

Born: 10/05/09

Save Little Michael

                I am writing to you about our problem at hand. Our son Michael has been on Neocate Junior Unflavored an Amino Acid-Based Medical Food since he was three months old. We are not sure what is wrong with him medically except he has Food Protein Induced Enterocolitis Syndrome.  Michael reacts to ANY food. We have trialed: Rice, Peas, carrots, sweet Potato, oatmeal, apples, bananas, Pears, prunes, squash, blueberries, raspberries, apple juice, orange juice, saltine crackers, oyster crackers, rice cookies, rice wafers, croutons, tomato, potato, cheerios, froot loops, green beans, white bread, wheat bread, egg, cucumber, popsicles, Gatorade, chicken, bacon, milk, cheese, noodles, rice noodles, cheez it, corn, hamburger, fruit chews, lollipops, macaroni and cheese,  black olives, tea, unfiltered water,  Elecare Infant, Elecare Junior, Neocate Infant, Neocate Infant with DHA and ARA, Neocate Junior with Prebiotics, Neocate tropical, Enfamil, Eo28 Splash, French fry, amoxicillin, Benadryl, mylicon, Tylenol, Ibuprofen, Soy formula, goat milk, etc.

His only safe foods were Neocate Infant before SHS International started producing the DHA and ARA (due to soy content) and Neocate Junior Unflavored mixed with nursery water (without added fluoride). Our 3 year old son thinks it’s a treat to eat ice. My son goes through a can of Neocate Junior Unflavored a day to maintain his weight and nutrients. I know this formula better than I know the back of my hand.

When we got our shipment of Neocate in November it has a new label on it, which did not concern me; as I remembered Nutricia making a press release stating that it would have a new looking label but would have no change in ingredients. So the first time he had a new label my husband had made up his mixers the night before. This is our routine we make up water in his bottles and mixers so that it’s easy to travel with. I did not know that he had made them up with New label Neocate. Michael kept refusing his bottles that night, telling me “Mommy bottle ishy, yuck.” I kept telling him the bottles are fine, and that it’s a brand new one. He would only drink an ounce or two out of each bottle. I just figured he wasn’t really hungry. Then the next morning he would only drink 2 ounces out of each bottle. He was becoming very fussy and started to throw up. I called my husband to see if he had possibly gotten into anything the previous day as I was in clinical for my RN.

My husband assured me nothing was wrong and he must just have a stomach bug. Then Michael had diarrhea, and I was sure it was a reaction diaper. I know when my son is reacting to a food because his stool becomes mucous; yellow tinged and had black dots throughout. I called my husband and told him he needed to think through all of yesterday. He said they didn’t go anywhere, and that nobody came over, and that he didn’t even eat his usual lunch in the kitchen as he was not hungry. I wasn’t nice, but I was worried, as I had no idea what was going on. Michael wouldn’t stop crying and screaming, and was refusing his bottles. Thomas assured me he would be home in a few hours and that Michael would be okay. Michael had 6 more diapers filled with diarrhea, awful smelling, yellow, mucous, with blood. When Thomas walked in the door he walked through the kitchen gait to put his lunch box down and went into the garbage to throw out his trash. He held up the can and said “Jen this can is the new label.” He then said “You told me that their ingredients were not changing, just the label so it never crossed my mind to even look.” We sat at the table and marked off one ingredient at a time, to be assured that they were listed the same,  same nutritional facts and everything. This was November 16^th 2012.

I dumped out all his bottles and got them ready to sanitize. I also washed and sanitized his mixers. Thomas then went and grabbed a can expiring January 20, 2013 and filled his mixers. Michael started to drink his entire bottle, and by the next morning I saw a huge improvement. At this point we thought maybe it was one bad can mislabeled. I thought I was losing my mind. We waited 2 days to try another new label. This was November 19^th 2012. With the first bottle we diluted it so that he was only getting 2 ounces of new in his 8 ounce bottle. Then within two hours of that bottle Michael started screaming in pain again holding his belly telling me “Mommy, my tummy hurts.” I immediately dumped that bottle out, threw it in the garbage, and washed and sanitized his mixers. I then called 1-800-365-7354 and spoke to Christine. She told me that the ingredients haven’t changed and that us parents are just concerned because of the new label. But then asked for my lot number and I told her 100332318 can # 002733 manufactured Aug 20, 2012 expiration Feb 16, 2014 timestamp 08:17. She then asked me why I think my son is reacting to it. I explained to her how my sons only source of food is this Neocate Junior Unflavored. And that nothing has changed in our house, and that there is no possible way for our son to get an accidental ingestion of any food. I then began to tell her how we had decided two months prior to stop food trials and give our son a gut rest period. It seemed odd that they wanted to pick up that entire lot the next day, even our opened can. So I let them. They promised they would test and have answers before Thanksgiving. Christine assured me that nothing had changed period. She then told me to try a different lot. We tried one bottle of 100328233 can 003572 manufactured on July 25^th 2012 expiration Jan 21 2014 time stamp 1838. That one bottle made him start screaming and yelling at us telling us his “tummy hurt and ishy”. Then the diarrhea came again, as with all of his Neocate New label reactions. I called Christine again and told her the information on that lot. She didn’t want to pick it up as someone else had already complained about that lot.

I got online and posted in some of my groups how we had reacted asking if anyone else had the same issue. And sure thing people were saying the same thing as me, with different diagnosis. Next phone call I made was to the FDA.  The person through the FDA took my information and claim and told me they were going to do an investigation as I was not the first call. Then I called Nutricia and let her know that we reacted to another lot # 100337968 can 001676 manufactured Sept 26 2012 expiration March 25 2014 time stamp 07:22.

At this point I said I would never let my son have a new label can until they could tell me what was making my son so ill. We were running out of old label and I knew I couldn’t buy old label through their online site. I got on amazon.com where we have bought the majority of our formula from, it has always saved us around 20 dollars for the four cans. Nutricia made sure to tell me they were doing everything in their power to verify that the formulation has not changed. Ulrike even told me the “glue on the label is even the same.” Then Michael reacted to an old label can lot #100305384 manufactured may 15 2012 expiration November 11 2013 can 04699.

I couldn’t understand what in the world was going on. So I looked it up more and realized that their product Neocate Nutra ingredient changed from corn starch to rice starch in the month of May 2012. So they couldn’t just tell me I am just a concerned parent about the label change, as I pin pointed what had changed in their factory and that they had some old label cans affected as well.

At this point they started talking to me about other forms of nutrition like Tolerex made by Nestle, which produces milk and soy in their facility and has a warning on their label “made in same plant with soy, milk, egg and wheat products. Not for parenteral use. For use only under medical supervision.” They referred us to Vivonex T.E.N., its warning is “Made in same plant with soy, milk, egg, and wheat products. Not for parenteral use. For use only under medical supervision. Not intended for children under 10 years of age unless specified by a physiciam.” These are not an option for us.

When we tried Elecare junior unflavored, we only made it through 6 hours before noticing a reaction. We believe it was the soy oil we reacted to. Neocate infant with DHA and ARA contains 6% soy so this is also not an option. We really have exhausted all avenues, to get us to Neocate Junior Unflavored. And Michael is 100% fine on any old label Neocate Junior Unflavored manufactured before May 2012. Yet the company assures us they “have tested for everything and turned the plant inside out and upside down nothing has changed and that testing came back within reasonable expectations.”

They won’t mention that anything we react to has a pop top with the number 23A or 23 B on it and that anything that is fine says 13A or 13B. Expiration of October 28^th (manufactured May 01 2012) they switched that around. They won’t tell me what it means. They also won’t tell me why they smell different, and the new one clumps in our bottles, and changes color as it sits out.  Also my son is reacting to this new formula the way he does rice. Nutricia and the FDA claim there is no test for rice protein but that they did test for rice DNA and it came back negative. I don’t know about you, but I am not a biology major and I know that protein and DNA are very different. They also won’t test the product for peptide chains or protein period.

My sons reactions consist of vomiting, severe pain, eczema, reflux, diarrhea (with mucous and sometimes blood), swollen face and wrists, gas, sunken dark eyes, hyper active, then lethargic, twitching, and neurological setbacks. During his reactions there is nothing that I can do to help ease his pain as he reacts to Tylenol, ibuprofen, Benadryl, etc. And his episodes are constant for the first two days and then come and go for about three weeks, they ease up slowly. But he goes from severe diarrhea, to constipation. I allow my son to pinch me because that’s how he tells me he is in that large amount of pain. I cannot even begin to imagine the pain that our child has had to deal with his whole life.

I always knew Michael was sick because he could only tolerate 1 source of nutrition, but I would have never thought that his only source of nutrition would be altered or contaminated in some way. When given these cans after May 2012; I can’t even imagine what would happen to him if he were to have it more than 12 hours. Would he choose to starve to death or would he drink it and get really sick, with dehydration, failure to thrive, hypovolemic shock, kidney injury, all leading to death.

The key to this whole story is Michael is 100% fine on Neocate Junior Unflavored manufactured before May 2012 expiration October 22, 2013 and before. But that anything made May 2012 and after could cause him to die. Also that we are not alone, and I know there has to be more people suffering besides the few families I can find. I don’t want my son to die. Please help us.

You can see that we are featured on the http://www.iafflocals20.net/index.cfm?section=1

And http://foodallergyfoundation.org/donate/save_michael and http://www.nbc-2.com/story/20297315/lehigh-family-desp. Our blog is https://savelittlemichael.wordpress.com and our facebook  is Save Little Michael (www.facebook.com/savelittlemichael). Thank you for your time, and please I beg you help us and help other children who will die because of this error with a medical food.

Jennifer Gonzalez

Email-  Savelittlemichael@centurylink.net

239-357-9039

FIrefighters son needs your HELP

http://www.iafflocals20.net/index.cfm?section=1