I recently started following a little man who's got on hell of a story: I am going to just copy and post exactly what his family wrote on his FB. It'll make your heart feel for him.
Logan’s Journey with FPIES started at about a month old when he started to have more projectile vomiting, to colicky which no matter what we did nothing helped sooth him, at one month his ped. Doctor inpatient Logan and quickly transferred him down to Madison Children’s hospital where an allergist confirmed it was a Milk Allergies, we had then started to trial formula’s from going from good start formula to soy then to Nutramigen and all were a total fail resulting in severe vomiting, agitation, colicky and even started to get mucus diapers, they then thought after being on nutramigen that maybe some of his issues were caused by his acid reflux so we trialed several medication and still same issue just less acid, we’d find him covered in vomit, lethargic and his colicky stage was not ending. Finally our ped. Doctor was concerned and thought it would be best if we tried getting Logan on a more broken down amino acid medication formula so we got Logan on Neocate Infant, it was day and night after that, vomiting slowed down, he was more cheerful, was sleeping better, was more comfortable, and stools were back to normal, Logan had several scopes, test, blood drawn, allergy test done and they just couldn’t seem to pin point anything besides Logan’s GI said Protein Allergies. Logan then was old enough to start baby foods we had noticed him having more reactions to foods again the severe projectile vomiting, a few FPIES triggers were pea’s, peaches, and baby rice cereal he would get so uncomfortable hours after having them, Logan’s main nutrition was the Neocate infant. At one we tried to get Logan onto milk, it was a total fail resulting in some ER visits due to the reactions he became dehydrated. We then thought we’d try getting him on goat milk, soy or lactose milk again a HUGE fail, so doctor said let’s try Nutramigen again resulting in a fail, we had at this time stuck to Neocate Infant, Logan had trialed some mac and cheese again hours after eating it we’d find him limp, covered in vomit to diarrhea was very lethargic wasn’t himself immediately we knew it was the cheese/milk, Logan again tried a few bites of ice cream again hours later we’d find him having almost like the flu symptoms but 5 to 10 times worse, we then started to introduce more foods and from there forward we knew for sure he was reacting to milk, soy, goat milk, shell fish, fish, and more of the new recent reactions of strawberries and chocolate, we haven’t really trialed peas and peaches again so we are unsure if they are trigger foods. Logan then at age 2 tried to get him on the Necoate Jr. it was a nightmare, he stopped drinking his formula and eating his safe foods, he was losing weight rapidly we tried to flavor the Necoate Jr, freezing it, cold, warm, new bottles, new Sippy’s nothing mattered we even tried go back to Infant. Logan up and refused mind you it was his main nutrition since a month old. Logan ended up a month later w/ a NG tube to get him the nutrition he needed, had issues with that ended in a gtube couldn’t tolerate feeds then got onto a gj tube and again couldn’t tolerate, was referred to Milwaukee Children’s where he got a new GJ mind you not only did FPIES result in a tube but also he has a partial paralyzed stomach making the FPIES matter even worse. Logan was doing so well until we used up our stock pile of the “old” labeled Neocate Jr. February we ended up going strictly to the “new” labeled Neocate Jr. within a few days of changing Logan was having loose stools, projectile vomiting, lethargic, pale had a gray color to him he had NO fever, we couldn’t pin point anything so we kept j feeding the “new” labeled when he ended in ER a few times due to dehydration from the vomiting, after over 2 weeks went on with flu like symptoms we finally pulled the “new” labeled formula and switched to the “old” label and the next day we noticed a total different Logan, yes Logan was having a severe FPIES reaction for a few weeks to the “new” labeled Neocate Jr. even though Neocate is stating only the label changed. We are now slowly translating Logan short term on the Infant till we pray Neocate Jr. Fixes its problem, we are now scared because the Infant is changing in the next month or so, which means trialing a new formula again, Logan’s main nutrition is the Neocate due to his FPIES and his paralyzed stomach. Since one month old Logan has had several test done, to scopes to different doctors opinions and finally at a little over 2 Logan seen an allergist doctor in Madison for his asthma and allergies when right away he diagnosed Logan with FPIES finally we felt relieved to have a doctor that knew about FPIES, and knew how to point us at the right direction! Logan’s FPIES reactions take about 2 to 4 hours after consuming the food, he goes into abdominal pain, projectile vomiting, to diarrhea, to being pale, weak, lethargic and increase in behavior and usually needs Zofran to slow emesis down and IV fluids for dehydration! We have been fighting FPIES since a month old, Logan finally got diagnose at a little over 2 years old it was a relieve to finally get some support, we love reaching to the FPIES pages on face book for support for such a rare disease! We keep reminding ourselves that “Everyday holds a possibility of a miracle” PLEASE FEEL FREE TO FIND US AS A “FRIEND” ON FACEBOOK “LOGAN’S JOURNEY!” THANK YOU!
* SO my point in writing this post was to get you all informed that there is so much to be thankful for, and that is life, no matter how small the person. His family is holding a fundraiser for him for THIRTY-ONE
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