A Mother’s Journey

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

9 comments on “A Mother’s Journey

  1. Hello, Vivian gave me the link to your page. I have a son with lots of food allergies and intolerances, but not even close to what you got through ((hugs)).

    Have you done a full thyroid panel, including TSH, free T3 & free T4, and also tg and tpo antibodies?

    What are his typical body temps when not sick?

    Is FPIES a mitochondrial disorder?

    • We are trying to raise money now to be able to do some Mito testing and Mast cell testing I believe he had MCAD or something else. Our insurance won’t cover it and until now I thought we would just hope he grew out of it like they kept telling me he would. Not I know he won’t because i have the other mothers helping me on this path.
      His typical temperature when he’s not sick is normal, when he is reacting sometimes he runs cooler.
      His TSH and all that was normal twice, we are drawing at next reaction just to see if it changes.
      We are also doing a kidney ultrasound, a tryptase level, and a few other things.
      HUGS TO YOU TOO 🙂

  2. 🙂 unfortunately there’s such a problem with thyroid testing…

    Broda Barnes made a lifelong career of studying the thyroid and it’s effects on the body and found that blood testing is useless. Much like a calcium blood level will not tell you how much calcium is in the bones (you can have completely normal blood Ca and osteoporosis!), thyroid blood tests will not tell you what is actually in the body’s cells. Only basal body temps can reveal the true influence the thyroid is having on the metabolism. Current scientific method cannot determine if the cells are accepting the hormone from the blood!

    I would recommend Broda Barnes books and also by Mark Starr for some background – and the story Starr relates in his book about trying to get mito disorders treated with thyroid hormone – cheap, simple, safe but not recongized by mito researchers b/c they are wedded to incorrect testing methods. A description is here but there is more in his book:
    http://www.21centurymed.com/?page_id=12

    “Why So Many Conditions?

    How is it possible that the malfunction of one tiny gland can influence so many other functions that do not seem related to each other? Consider the most obvious effect of an underactive thyroid: reduced cell metabolism of proteins, fats, and carbohydrates. This not only means inefficient transport of nutrients into the cell membrane, but also inefficient transport of wastes out. As holistic practitioners well know, inadequate nourishment and the buildup of toxins (regardless of the cause) can exacerbate or outright cause virtually all conditions that we call “disease.” The more toxins engorge the cells, the more one becomes susceptible to infections and degenerative conditions. As it turns out, the mitochondria – microscopic energy-burning units of the cell responsible for about 90% of the energy production that our cells, tissues, and organs require for metabolism – are intimately affected by thyroid dysfunction. Starr writes:

    Thyroid hormones are responsible for our metabolism. When thyroid hormones are given to animals, trillions of mitochondria increase in size and number. The total membrane surface of the mitochondria increases almost directly in proportion to the increased metabolic rate of the whole animal. My medical school textbook, The Textbook of Medical Physiology, states: “It seems almost to be an obvious deduction that the principal function of thyroxin [thyroid hormone] might be simply to increase the number and activity of mitochondria.”
    The beneficial symbiotic relationship between mitochondria and thyroid hormone works both ways. Adequate levels of thyroid hormone not only increase mitochondria number and function, but as Starr points out, “mitochondrial mutations appear to be largely responsible for the metabolic defects at the cellular level, which result in a hypothyroid-like condition…. Defects in mitochondria, as well as synthetic toxins, impair thyroid hormone metabolism at the cellular level.” Not surprisingly, symptoms of mitochondrial disease are the same as symptoms of hypothyroidism.

    There are scores of environmental toxins that interfere with every aspect of thyroid metabolism and cause the mitochondria to malfunction. These include petroleum and petroleum byproducts; pesticides, herbicides and fungicides; heavy metals, among them mercury, arsenic, lead, aluminum, barium, and cadmium; organic solvents, including benzene, toluene, trichloroethylene, and dichloromethane; and numerous other synthetic chemicals. Fat-soluble toxins lodge in the fat cells that lie beneath the skin and surround internal organs. Women, whose bodies contain more fat than men’s, hold proportionately more toxins in their systems and thus, one might assume, suffer from hypothyroidism in much greater numbers than do men. Statistics show this to be true.

    Faulty thyroid receptors on the cell membranes as well as mitochondrial mutations can cause a hypothyroid condition. “Defective thyroid receptors,” Starr writes, “may prevent a sufficient supply of hormones that are circulating in our blood from reaching the mitochondria and other crucial sites such as the nucleus of the cell. The nucleus is where the thyroid hormones activate genes and stimulate protein synthesis, among a host of other tasks” [emphasis added]. This explains why so many people with underactive thyroids have brittle nails and hair, and even bone defects. If the body cannot utilize amino acids to create new, properly formed tissue, the cells will be imperfect and cause structural abnormalities.”

  3. I just saw your story on the local news in the Twin Cities. I actually trained at Mayo and hope that you are working on getting the answers you need. My twins have multiple food allergies (nothing to your son’s extent). They failed all formulas and wouldn’t take Neocate. I stumbled upon Enfamil’s version of Neocate called Nutramigen AA (the girls did NOT tolerate Nutramigen). They recently redid their label as well and now it’s called PurAmino. I had a lot of anxiety when the label changed, wondering if it would still work for them-forunately for us it did. It is an infant, not toddler formula, but I have kept my almost two year old twins on it. It is amazing to see how they have thrived on it. I am most certain you have heard of it, or probably even tried it given your extensive medical workups, but I wanted to let you know of it just in case the Neocate Jr is not an option for your anymore. Prayers for your whole family!

    Christina

  4. Dear Jennifer,
    I have severe, life-threathening food & medication allergies too. At 3 years old I had already experienced a cardiac arrest, adema, coma, and a brain biopsy. I was so malnurished that my hair turned yellow and then fell out. Then one day a nutritionist suggested I try Vivonex. It worked like a miracle. As I got older I switched to Tolerex. I am 35 years old now, but i have been on Vivonex and Tolerex, since I was 3. Now my diet mostly consits of Tolerex, plain white rice, bananas, and potatoes. I can harldy eat much else. My reactions to most foods cause my throat to close up. Milk, eggs, flour, & wheat are the worst. Sometimes just having my husband cook pasta in the same room can cause me to have an asthma attack or require Benadryl. Vivonex & Tolerex is made by Nestle Nutrition. Maybe that is something that can help your son. It is made for people who r allergic to everything. You can go to nestlenutritionstore.com to read about other products that are made for individuals with food intolerance and maybe ask your son’s doc about it. I would love to talk to you some time. Maybe some of what I learned about my condition could be benefical to you in some way. I know that this is a very difficult time in your life now. But I have high hopes that you will find something that works for Michael. I hope you can take comfort in knowing that I survived this long, lived a mostly normal life, and had a beautiful, healthy daughter that does not have any of the food allergies that I have.
    Sincerely,
    Puja Taylor

  5. Dear Jennifer. I tried to post this yesterday, but i dont think it worked. Forgive me if im repeating myself. I suffered with severe food and medication allergies my whole life. When my parents started trying foods, they had difficulties finding food that wouldn’t make me itch or cause my throat to close up. By 3 I had already been through cardiac arrest, had adema, had been in a coma, and had a brain biopsy. My hair had also turned from black to yellow, and then fell out due to being malnourished. Luckily one day a nutritionist suggested Vivonex, which is for people allergic to everything. That worked like a miracle. It gave me the protein and vitamins that my body needed. As I got older I switched to Tolerex. Nestlé nutrition now makes Vivonex and Tolerex. The website is nestle utritionatore.com. U might want to go to the website and read about it and show it to ur son’s doc. I’ve been on it my whole life and I’m 35 now. I still have severe food allergies, but I am able to have a few other foods like white rice, bananas, and potatoes. Good luck to u. Feel free to contact me anytime.

  6. My son is 3.5 and has always been a picky eater. But I can’t imagine going through what you’re going through! I will be praying for you, him and your husband. Just know that there are some people out there who CRAVE attention and since your story is sad and will divert attention away from them, they will try to make themselves look worse and make you look like you exaggerate so that they can have the attention again. There are also people out there who have always been around kids and think they are good with kids, so they feel the need to correct you. They are self-centered and ignorant, ignore them. There are people out there who are bitter, sometimes because they cannot have kids and sometimes because they have lost a child, and instead of dealing with those feelings they lash out at others like you. Pray for them and ignore them. Do not feel the need to explain yourself. Mean people and self-centered people aren’t listening anyway. One thing you NEED to do- train someone, like your mother, to care for Michael for 4 hours, and go out. Get out of the house, go to dinner, just go sleep at a friend’s house, but get out of your house. It will do your mental health some good. (Love and hugs)

  7. hi! i’m writing to you from a german TV network. we are in touch with a german family who wants to send you neocate from germany. our producers are supposed to set up the contact with you. could you give us a ring at 212-975-7167? we’d like to chat with you about it. thank you!

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