Levi was born in late June, 2010. My pregnancy had been less than “normal”. We had a planned c-section and at 1:34pm I heard him cry for the first time. They brought him over and I got to peer into those big eyes and knew my life was going to change forever. Little did I know how much my life was going to change.
After delivery Levi was transferred to the nursery while I was stuck in the O.R. for several hours due to complications. 5 hours after his bIrth, I got to hold my son for the first time ever. Unfortunately due to more complications I was sent up the the ICU while my son stayed with my mother on the labor and delivery floor. I was only allowed to see my son 3x a day for about 15 minutes each time. I was so sick it was hard to keep up with the pumping, but i still tried. Finally I was reunited with my son and we continued trying to breastfeed. I remember calling the nurses in because he was throwing up after every feed. They told me it was completely normal for him to spit-up and he had been doing that with the formula they were using also. The lactation consultant came in and talked about increasing my supply and supplementing in the meantime.
Days after heading home we realized that things were not right. The vomiting, the arching of the back, the crying, lack of sleep was just unbelievable. We went to the pediatrician and they said it was normal, but he might have reflux and started him on Zantac and switched his formula. Next week i was back complaining things were not better and I was told these things need time. By the time he was six week old he had been to the pediatricians at least twice a week, on our 3rd formula trial, 2nd reflux medication on a prescription for his eczema. I was doing laundry every day because I just couldn't keep up with all the vomited clothes [both his and mine]. I was exhausted, tired and at my wits end. This was NOT normal no matter what my pediatrician said and she finally realized it when I made her watch me feed him 2oz and he threw up across the room. She finally got us an appointment with a G.I. specialist. They switched his formula again to Nutramigen then Alimentum, tried a new reflux medication and agreed that if he was not over this “colic” by 3 months old, we would do an endoscopy to see what his insides looked like. During this time, my sister learned about Neocate formula from one of her friends and told me about it. My sleepless nights centered around figuring out a reflux solution and learning about this new formula Neocate. When I got the call from g.i. about setting up the endoscopy I demanded that they change his formula. Doctor wanted to wait until after his endoscopy but I held my ground and I'm so glad I did. The next day I went and picked up a few cans of Neocate Infant said a prayer and made his bottle. Within 3 feedings he was throwing up alot less, by 2 weeks he had stopped vomiting all together and by 4 weeks his skin was beginning to clear. The endoscopy found inflammation and irritations but we also found healing tissue. The Neocate was definitely working! After the biopsy results came back we got the diagnosis of Milk/Soy Protein Intolerance.
For several months things were going great! His reflux was being controlled by 2 medications, and he was gaining lots of weight. Neocate was doing its job and my boy was happy as can be! At 6 months old we ran into some constipation. I called my pediatrician and they recommended trying some baby oatmeal. Within 30 minutes of eating, he broke out in hives. For the next 2 weeks he kept breaking out in hives, eczema outbreak and vomiting and diarrhea that looked like he sneezed into his diaper. I couldn't figure out why. so we made more phone calls and G.I. told me it was a reaction to Oats and the reason he kept reacting was because i was slathering him in Aveeno products [Oats is a main ingredient]. He was now labeled as Multiple Food Protein Intolerances (MFPI). After speaking to a dietitian we decided to hold off solid foods in hopes that his digestive track would mature and he would not have reactions anymore.
I had started solid foods with my son at 8 ½ months old. Very slowly (like ½ teaspoon a day for a week then added more) . I also started keeping a food diary to keep track of what his diapers looked like, what I fed him, if he was cranky, and if his reflux acted up. When he was a year old he could eat apples, bananas, squash, carrots and brown rice. Around 14 months I trialed wheat and he reacted. I trialed chicken, he failed. We had about 6 failed foods in a row and I was feeling really discouraged. I ended up stopping food trials for a few months because it was just too upsetting for both myself and Levi. Eventually we slowly started adding more foods to his diet: grapes, pumpkin, turkey (our first safe meat!!) We also had a fair share of accidental ingestion of bad foods ( I have some amazing nieces and nephews who love to share!) It was around this time when I realized that Levi’s milk intolerance had actually gotten worse and he needed an epipen (which I’ve had to use twice unfortunately) So we made an appointment with his allergist to talk about doing some allergy testing. To my surprize he did not want to do it. He informed me it was not worth the pain of doing blood tests or scratch tests because I had been keeping my food diaries. He said that the blood tests do not determine intolerances and would do us no good. I was told to trust my gut and if i saw reactions to mark it off on our “Bad Food List”
So here we are now, my son will be 2 years old in less than a week. We have 3 safe meats, 3 safe grains, loads of safe fruits and a few safe vegetables (no green ones though) We also have several severe allergies that require me to keep epipens with us at all times. Along with having g.i reactions to foods he reacts to all oral antibiotics and several other oral medications. (He has a very picky stomach i like to say). He is still required to take in 36oz of Neocate formula a day because there are days where he refuses to take anything by mouth (oral aversion; a by-product of many failed food trials). Every day is an uphill battle for us but we keep hiking, because what else can we do? Give up? I don't think so. My dream is to go somewhere and and let my son eat whatever he wants. Will that happen? Probably not but I can hope. People tell me all the time “I don't know how you do it!” My reply is we don't have a choice., we do what we can for the ones we love.
P.I. may have a strong grip on my son’s digestive health but you could never tell. My kid is a fighter. All kids with P.I. are fighters and hopefully one day they won’t have to fight so hard. Doctors will be more aware of P.I. and how to treat it instead of brushing it off. If it wasn't for websites like P.I.C. I'm not sure how I could have coped. These people understand what your are going though. They understand the triumph of finding a safe food and sadness of failed food trials and the frustration when family and friends just don’t get it. We are here to support one another.
After delivery Levi was transferred to the nursery while I was stuck in the O.R. for several hours due to complications. 5 hours after his bIrth, I got to hold my son for the first time ever. Unfortunately due to more complications I was sent up the the ICU while my son stayed with my mother on the labor and delivery floor. I was only allowed to see my son 3x a day for about 15 minutes each time. I was so sick it was hard to keep up with the pumping, but i still tried. Finally I was reunited with my son and we continued trying to breastfeed. I remember calling the nurses in because he was throwing up after every feed. They told me it was completely normal for him to spit-up and he had been doing that with the formula they were using also. The lactation consultant came in and talked about increasing my supply and supplementing in the meantime.
Days after heading home we realized that things were not right. The vomiting, the arching of the back, the crying, lack of sleep was just unbelievable. We went to the pediatrician and they said it was normal, but he might have reflux and started him on Zantac and switched his formula. Next week i was back complaining things were not better and I was told these things need time. By the time he was six week old he had been to the pediatricians at least twice a week, on our 3rd formula trial, 2nd reflux medication on a prescription for his eczema. I was doing laundry every day because I just couldn't keep up with all the vomited clothes [both his and mine]. I was exhausted, tired and at my wits end. This was NOT normal no matter what my pediatrician said and she finally realized it when I made her watch me feed him 2oz and he threw up across the room. She finally got us an appointment with a G.I. specialist. They switched his formula again to Nutramigen then Alimentum, tried a new reflux medication and agreed that if he was not over this “colic” by 3 months old, we would do an endoscopy to see what his insides looked like. During this time, my sister learned about Neocate formula from one of her friends and told me about it. My sleepless nights centered around figuring out a reflux solution and learning about this new formula Neocate. When I got the call from g.i. about setting up the endoscopy I demanded that they change his formula. Doctor wanted to wait until after his endoscopy but I held my ground and I'm so glad I did. The next day I went and picked up a few cans of Neocate Infant said a prayer and made his bottle. Within 3 feedings he was throwing up alot less, by 2 weeks he had stopped vomiting all together and by 4 weeks his skin was beginning to clear. The endoscopy found inflammation and irritations but we also found healing tissue. The Neocate was definitely working! After the biopsy results came back we got the diagnosis of Milk/Soy Protein Intolerance.
For several months things were going great! His reflux was being controlled by 2 medications, and he was gaining lots of weight. Neocate was doing its job and my boy was happy as can be! At 6 months old we ran into some constipation. I called my pediatrician and they recommended trying some baby oatmeal. Within 30 minutes of eating, he broke out in hives. For the next 2 weeks he kept breaking out in hives, eczema outbreak and vomiting and diarrhea that looked like he sneezed into his diaper. I couldn't figure out why. so we made more phone calls and G.I. told me it was a reaction to Oats and the reason he kept reacting was because i was slathering him in Aveeno products [Oats is a main ingredient]. He was now labeled as Multiple Food Protein Intolerances (MFPI). After speaking to a dietitian we decided to hold off solid foods in hopes that his digestive track would mature and he would not have reactions anymore.
I had started solid foods with my son at 8 ½ months old. Very slowly (like ½ teaspoon a day for a week then added more) . I also started keeping a food diary to keep track of what his diapers looked like, what I fed him, if he was cranky, and if his reflux acted up. When he was a year old he could eat apples, bananas, squash, carrots and brown rice. Around 14 months I trialed wheat and he reacted. I trialed chicken, he failed. We had about 6 failed foods in a row and I was feeling really discouraged. I ended up stopping food trials for a few months because it was just too upsetting for both myself and Levi. Eventually we slowly started adding more foods to his diet: grapes, pumpkin, turkey (our first safe meat!!) We also had a fair share of accidental ingestion of bad foods ( I have some amazing nieces and nephews who love to share!) It was around this time when I realized that Levi’s milk intolerance had actually gotten worse and he needed an epipen (which I’ve had to use twice unfortunately) So we made an appointment with his allergist to talk about doing some allergy testing. To my surprize he did not want to do it. He informed me it was not worth the pain of doing blood tests or scratch tests because I had been keeping my food diaries. He said that the blood tests do not determine intolerances and would do us no good. I was told to trust my gut and if i saw reactions to mark it off on our “Bad Food List”
So here we are now, my son will be 2 years old in less than a week. We have 3 safe meats, 3 safe grains, loads of safe fruits and a few safe vegetables (no green ones though) We also have several severe allergies that require me to keep epipens with us at all times. Along with having g.i reactions to foods he reacts to all oral antibiotics and several other oral medications. (He has a very picky stomach i like to say). He is still required to take in 36oz of Neocate formula a day because there are days where he refuses to take anything by mouth (oral aversion; a by-product of many failed food trials). Every day is an uphill battle for us but we keep hiking, because what else can we do? Give up? I don't think so. My dream is to go somewhere and and let my son eat whatever he wants. Will that happen? Probably not but I can hope. People tell me all the time “I don't know how you do it!” My reply is we don't have a choice., we do what we can for the ones we love.
P.I. may have a strong grip on my son’s digestive health but you could never tell. My kid is a fighter. All kids with P.I. are fighters and hopefully one day they won’t have to fight so hard. Doctors will be more aware of P.I. and how to treat it instead of brushing it off. If it wasn't for websites like P.I.C. I'm not sure how I could have coped. These people understand what your are going though. They understand the triumph of finding a safe food and sadness of failed food trials and the frustration when family and friends just don’t get it. We are here to support one another.
