You guys, I know I have not updated our FPIES journey on my blog in a really really long time. In fact I never even shared how our Food Trials at Denver’s National Jewish Health Hospital went. I will try to be better about it in the future. I know I have turned to other people in social media for help and answers. It can be a really encouraging and helpful source of information when you are limited in resources (since FPIES is still pretty rare).
Here is the “as short as I could make it” update on what’s been going on with us.
D trying eggs (and passing), with his awesome nurses, and Doctors at National Jewish Health in Denver CO.
One year ago exactly we were in Denver for Food Trial. We spent 3 weeks living in a hotel (just me and both boys since the hubby was overseas), and we didn’t get nearly the amount of answers we had hoped for. Our first week D was SO sick so we couldn’t trial anything. It became apparent on our 2nd week as we started trials that D has severe oral aversions. This was something I had suspected because apples are a safe food for him, but he can’t tolerate the texture of applesauce. He’d gag at the first touch of it on his tongue.
- Eggs – PASS!
- Rice – Possible Pass (He didn’t take as much as they’d have liked him too, but since that one is usually a high reactor and he didn’t at all they called it a pass. I would love to re-trial this one.
- Soy – Fail. Doctors at NJH did not want to call this an FPIES fail because his throw up happened hours after it was supposed to. We re-trialed while we were there and had the same hours after vomiting. I know my child enough to say this was a non-typical FPIES fail, but the doctors weren’t willing to say FPIES with it at all because it didn’t happen within their prescribed time frame. We did however both agree we should avoid this food.
- Chicken – Texture Fail. *NOT FPIES fail. He wouldn’t tolerate it.
- Peas – Texture Fail.
After the Pea fail due to textures I decided, and the staff agreed that we were done. Further testing only stressed his the severity of his oral aversions. I will say I was very happy with the staff at National Jewish Health and their FPIES/food allergy program. They were really awesome to us and both of my boys.
We came home and met with our Allergist who refereed us to a speech and food therapy place. To this DAY they couldn’t fit us in. I will be super honest here. I tried really hard for 5 months to get him in for appointments. Then we had some big breakthroughs and life got in the way. I am back on the proactive band wagon and I’m exploring state assistance now.
We changed GI doctors after our visit to National Jewish Health because I couldn’t stand the staff at the office we were at. Two months after our hospital stay they called to ask where they should send D’s medical chart to!! I had them promise me it would be sent before we went to our Food Trials – but they didn’t “Get To It…”. Our new GI wanted to do an endoscopy to rule out one additional issue. During that test we were told two things:
- When D lays down his tonsils touch – Our GI doctor was a bit concerned about that.
- The Endoscopy showed no issues in his esophagus like the new GI was concerned about. It did show some irritation in his stomach (mild gastritis and duodenum inflammation. The GI said he’d really only expect to see that if the child had been retching recently. He had not. So it’s a bit concerning, and he wants to put him on acid reflux meds.
FYI – I opted out of them because he hasn’t be experiencing pain, and in the past the only frustrated him and usually ended up with him throwing up due to his oral issues. However, I am now hoping to ask for a prescription so that he can have some comfort with newer foods he’s been eating.
The Elecare Issue:
One of the reasons I couldn’t put all my attention into speech therapy was because for about 4 months I fought tooth and nail to get his Elecare covered. Our insurance refused to cover it. We had an awesome Doctor who helped us with samples, but eventually those ran out too. If you are fighting with your insurance – all I can tell you is KEEP DOING IT. It took me so long to finally get someone to listen, and once I did we started to move in the right direction. No one will tell me why it’s covered now. But it is. And that’s a great thing because out of pocket it would cost nearly $1200 a month! If you are reading this and need help – feel free to email me. I can’t promise I will have any information you don’t already have, but I’m happy to help.
I don’t know what happened or why, but right before his 2nd birthday D started to eat some pureed foods. (He likes the pouches.) At first we were pretty nervous, and we did have our fair share of gagging pukey messes, but each day seemed a little bit better. Now he will eat 1-2 pouches a day. Nothing with extra texture.
So we have lots of new veggies and fruits that are passes!! He loves strawberries and blueberries. He loves mango and spinach. He likes really smooth hummus, and he ADORES hot sauce and mustard. (Obviously the last two are not very full of nutritional value, but a step in the right direction.)
After he began to eat pouches he also began to want to suck on big kid foods. He can no swallow solid food without puking, but he loves to hold it in his mouth and then spit it out when he’s done. This often triggers his gag reflex, but he loves it.
Because of this we have re-affirmed that dairy – while not an FPIES reaction gives him HORRIBLE eczema. I also believe that wheat causes the same reaction, but we have time to figure that out.
Someone said that when their molars come through it triggers a change in their saliva and they are better able to process food. Someone else mentioned that using a vibrating toothbrush helps to desensitize their mouth and allows them to eat more. We had both things happen at once – but whatever it was – I am excited to see him eating more. He typically has 1-2 pouches a day.
We have had NO additional fails at this point. So that is really really awesome. Our Doctors at NJH hospital said reactions to fruits and veggies at this point would be pretty unlikely.
Tomorrow I will be sharing more about it – but D is going to have his tonsils removed. The GI, Allergist, and Pediatrician all recommend we check with an ENT about the size of his tonsils. They will be removing them this week and we hope that will begin to allow him to swallow food better.
If I can say one thing to any parent who suspects or has a child diagnosed with FPIES. It’s not easy, but it does get better. You will learn and adapt as your child does. There are a lot of amazing resources available.
But most of all – DO NOT be afraid to continue to push until all your questions are answered, and do not be afraid to ask a million questions. FPIES has no “test” so it can be really frustrating to watch your child have to rule out lots of other issues. It will be okay, and you are doing awesome.
Well, that was as short as I could make this post. If you made it reading all the way through here… Bravo and thank you. Please consider sharing our post so that others who are also struggling might find it and maybe take something away from it that they wouldn’t or didn’t previously already know.
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