Specialist-FPIES

Oh my little sugar pie pumpkin butt. Yes, that is what I’ve been calling you lately. J You sure are a handful. Mommy has been very bad about updating this blog lately. A lot has happened the past few weeks.

   

Last week you gave us quite a scare. You had a pretty severe reaction to what we assume was something cooking in the kitchen. Your daddy started making dinner around 5pm last Wednesday night and by 5:30pm when I got home from work you were already starting to have a reaction. You hadn’t had a bottle yet, so we think that your reaction could possibly have been from just simply breathing in the air that was filled with food particles. Daddy used an entire stick of butter to baste a turkey in so there was definitely some stuff in the air that you would have been allergic to. It is SO scary to think about you having such a reaction to something that you didn’t physically ingest, but just breathed in! Sometimes this is almost more than mommy can handle.

Ok so back to what happened. At 5:30pm I went to change your diaper and you were bright red and swollen in your diaper area. It was just like what we saw when you tried green beans. I just left your diaper off and you rolled around on a blanket naked for awhile because I knew that your diaper area had to be painful. You were pretty fussy all evening, but I didn’t notice anything out of the ordinary before you fell asleep. At 2am you woke up screaming. I mean I jumped out of bed from a good sleep because you were so loud. You had a very messy diaper so your little bottom was raw and painful. You were inconsolable. Mommy even went upstairs and woke daddy up and told him I thought we needed to take you somewhere. I didn’t know what to do. I just wanted to cry with you because it made me feel terrible that you were in so much pain. After I got both you and I calmed down, I made a bottle for you. Once I started to feed you the bottle I noticed that you were having some trouble eating. I noticed that you couldn’t close your mouth all the way around your bottle. Then I noticed that your tongue and bottom lip were pretty dang swollen! You’ve never had that happen before, at least not that I’ve noticed, from any of your previous reactions to things. I thought that your throat was going to close up and that you wouldn’t be able to breathe! I was scared. Again, I didn’t know exactly what to do. So once you fell back to sleep, I just stayed up and watched you breathe. After about an hour and a half of just watching you, I felt pretty confident that you were breathing fine so I put you back in your crib.

As soon as the doctor’s office opened Thursday morning, I called and they got you an appointment at 9:45am. Your pediatrician checked you out and I explained what was going on. She finally gave us a prescription for a medicated diaper rash cream. We’ve seen constant diaper rash since you were three weeks old, but what you have right now is very severe. The doctor also contemplated switching you to an amino based formula called Neocate. It is obtained by prescription only and not many pharmacies carry it. From what I’ve gathered it is kind of hard to come by unless you order direct from the company itself. It is even more expensive that your formula right now. Daddy did a search online and four fourteen ounce cans cost about $160. You can go through one fourteen ounce can in about 3 days with how much you eat. I’m hoping that if we do ultimately have to switch formulas, the company who helps us out with your Nutramigen right now will also be able to help us get and pay for the Neocate.  Mommy was getting frustrated because it sounded like the same old story we’ve been getting since you were three weeks old. Make a change and wait, wait, wait. Finally, the doctor told me that she was going to go consult with one of the other pediatricians in the practice. After just a few minutes she came back into the room and told me that they were going to refer us to a specialist! FINALLY! Mommy was so happy at this news. We’ve been wanting this referral for months now. The doctor did tell mommy that if your tongue and lip ever swell up again to take you to the ER immediately. Allergic reactions usually get more severe after several exposures to the allergen. Next time your throat really could close up so we need to be pretty cautious about things.

We did have your specialist appointment with a Riley Pediatric Gastroenterologist yesterday. He was awesome and made mommy feel very comfortable. After looking over your medical record and having us explain your situation he did his evaluation. You did a great job even with all of the prodding and poking baby girl. He THINKS that you have Food Protein Induced Enterocolitis Syndrome (FPIES). http://fpiesfoundation.org/about-fpies-3/ He also thinks that you have a zinc deficiency because you have so much daily diarrhea. We are still seeing 5-10 diapers a day with loose stool which means that your insides and bottom are just not able to heal. Zinc is what helps your insides heal, but your body never has the chance to absorb zinc because food just goes through you too quickly. For the next week we have to give you zinc sulfate drops to hopefully help your tummy and intestines start to heal. Only one pharmacy in the area was able to make the zinc sulfate drops for us so we will be picking those up and starting you on them this evening. If the zinc helps, we should see your stools lessen and your diaper rash clear up in about 7 days. If in 7 days we do not see these changes, we will start you on the Neocate formula. We have to do a follow up with your GI specialist in 7 days to update him on your situation and we will have another appointment at the end of March. Ideally if we get your insides healed up a little bit, we can introduce some veggie baby food in about 3 weeks. We will much better be able to evaluate your food allergies if we get your stools under control first. It is very, very rare that an infant literally cannot tolerate any type of food protein so we are hopeful that we see some positive results in the next 7 days. We might have been confusing your reactions to the solid foods that we had tried before with the symptoms of FPIES. I hope that you do not end up being one of those rare babies that cannot tolerate any food at all. The article below is about a 3 year old boy who has FPIES and cannot tolerate any solids. He drinks 20-30 bottles a day of Neocate Junior formula. I don’t want that to be you my darling. http://abcnews.go.com/m/blogEntry?id=18573441&ref=http%3A%2F%2Fwww.yahoo.com%2F

The GI specialist said that we will most likely still need to see an allergist, but he will be able to refer us to a Riley pediatric allergist and we will not have to get the referral through our regular pediatrician (thank goodness). We need to really work on getting some solids into your diet these next few months. If a baby has not started solid foods by age 9 months, sometimes they develop food aversions where they will refuse to eat any solid foods that you attempt to give them. Since you seem to have a very severe allergy to milk protein, the GI specialist said that we may need to introduce you to milk protein in a controlled setting in a doctor’s office or hospital when that time comes. I don’t think we will try milk protein anytime soon baby. Probably not for years at this point. I could write so much more about the “what if’s” that we learned from the meeting with the specialist. For now I’m just going to leave it at this. I will explain more when the time comes, if the time comes...

So mommy feels good about things baby. I feel like there is at least a plan in place now. I know that if in a week we are not seeing results, we move onto the next thing. I like having a plan. We all know how mommy’s plans have gone these past 6 months baby so I’m not getting my hopes up too much. I AM hopeful, though, and thankful for some direction on your situation. You are such a trooper. I hate to think about how much pain you have already endured in your lifetime and how much pain you deal with on a daily basis. You are amazing and mommy loves you so much. Always and forever.