My name is Jennifer Gonzalez. I am the mother of Michael born 10/05/09. Our journey [my husband, myself, and our son] began early as we had complications with our pregnancy. Michael was induced at 37 weeks and was born weighing 4lbs 4oz, 17in long. The hospital we stayed at immediately gave him milk formula even though they knew I wanted to just breast feed him exclusively. But with him so little they told me they wanted him to get supplemental nutrients. So I agreed, I breastfed him every 3 hours and supplemented with the 1 oz of formula he would take.
The nurse came in when we were ready to go home from the hospital and took him to the nursery because he had jaundiced. So he stayed there for a couple days and my husband and I would not leave him. So we came for every feed, and watched him through the window on all of the billie lights. Then they told us he could come home, his levels had began to drop a little and to take him home and love him as much as possible. The nurse weighted him (she had her finger on the scale and a wet diaper) and he came in at 4lbs even. I feel that they maybe should have kept him longer, as we were okay with that. His level started to rise again so I had to feed him as much as possible and sit with him in the patio window so he would get indirect UV rays. He had to be in only a diaper, so needless to say Michael used to hate being naked. This helped as his level became 6 within a week.
Then he just wouldn’t stop crying and no matter who I called they just assured me it was colic and to turn on the drier, or vacuum or to get a white noise maker, I did all of that. Nothing was making him happy, not feeding, rocking, bouncing, singing,. He only slept about 30-50 minutes at a time and his maximum sleep in 24 hours was 2 hours. This lasted for two months until he coughed up blood from crying so much. So we rushed him to the ER, and they checked him out. The Doctor (GI) came in and told us that he had milk allergy and that someone should have recommended that sooner. So we switched him to Nutramigen, so we went to the store and bought as many cans as we could. But a week later he was having the same reaction, his body was swollen, especially his cheeks and wrists, he would not stop crying no matter what I did to help him, and I again wasn’t getting any sleep.
Then after a few appointments the Doctor switched him to Neocate Infant. This helped drastically until she told us to start trying stage one baby foods. Then it began again, I thought the worst was over. We have tried 43 foods and the only things that is safe for Michael is Neocate Junior Unflavored and water. His treat is Ice. He just finally got the diagnosis of FPIES, as here in Fort Myers FL, no one really knows about it. The new doctor seems great, I am so happy to have him on board. I gave up working and my schooling for a while, and now am going for my RN. My hope is to find him hope. Upon researching myself a coupld months ago I had come upon articles in my database for school articles about children with FPIES, so before we were told by the doctor finally that this is what it is I already knew their is no treatment except to avoid the triggering foods, that may sound easy to you but he can’t have anything in his mouth except Neocate so that makes my life extremely hard, more so when I bring him to the store, or even the doctors. You don’t realize until you have to that their is food everywhere you look. Look at all those crumbs right now (the ones your looing at on your desk or floor), We can’t have those in our house at all.
We are asking for help, we want someone to start to find a treatment, a treatment that makes him better, even if it’s giving him some of our organs or anything……anything to help him.
What you think is normal
Written Jul 9, 2012 2:24pm
So generally a kid turns 1 and gets to get birthday cake all over their face. You can see the picture in your head as you read this. Everyones happy theirs frosting everywhere. For Michael his first and second birthday cakes consited of a toy cake that sings happy birthday and let’s you blow out the candles. Thank heavens that fisher price had a toy out like this or I would still be ripping my hair out.
Most kids you say something about when you see that they are still drinking from a bottle. “That child is STILL on the BOTTLE?!?!” I just smile and say yes because you clearly don’t understand that he get’s bad gas from a sippy cup and it’s hard enough that that’s all he can have in his diet is Neocate Jr and water and ice, now you have to pick on him. Or when you say “oh I can’t belive that kid is throwing a tempertantrum like that”, and “that moms just holding him trying to comfort him doesn’t she know he must be a BRAT?” I wish I had the courage to turn to you and tell you that “NO Michael tried a new food yesterday (or Michael re-tried a food) and he’s having a reaction the screaming and crying isn’t because he wan’t attention it’s because the pain is so severe that’s all he can do.”
So I wish that people would stop judging what’s “normal” and “not normal” because at the end of the day when you say things like that you just hurt us and look like a complete idiot. Yes I said idiot.
The other hard part with this is even explaining it to family and friends. For instance their is a family member (who I will leave as un-named) that thinks if we just keep feeding him he will be okay, or that we need to feed him more because his intestines just need to be roughened up by having more solids. This person has even said that we want our son to be sick. CAN YOU BELIEVE THAT? Why in the world would you wish this upon anyone? He’s such a lover and a great person, he’s always trying to make someone laugh. I am heart broken and lost every day of my life now because of him being in this pain caused by FPIES. FPIES changes the way you look at everything, I dream of the day Michael can sit down to dinner with us and be able to eat anything (even if it’s only a couple foods) so that we can eat and enjoy life together. Think about it everything is around food, birthdays, holidays, gatherings of any kind.
Michael is going in for a colonoscopy and endoscopy on friday, (yes I know it’s the 13th) and he’s supposed to have clears, people are telling me how he can have chicken broth and gatorade and popsicles (the list goes on and on) but the thing with that is protein, and dyes that he can’t have and other things. So for 24 hours Michal can only have water, yes I said water.
How do you explain this to people? Should I print out a brochure to hand to people with questions? Or write out a mommy letter called FPIES for common folk? Why are people so pushy when they don’t even know what they are talking about?
Is FPIES a metabolic disorder that they just havent found yet? Is it found in their DNA once broken down? We need to find why it happens to find the how to fix it. Please help Michael.
I am sorry for the vent but people need to read this to understand how our thinking is different now and to know that judging people just hurts them.
The Gonzalez Family
P.O. Box 423
Alva, FL, 33920