Dr. Helm

I've spent countless hours on google searches trying to find more information, or a doctor within the state that knows enough about FPIES to help Kara and give us some direction. Our GI doctor is great but doesn't recognize FPIES, and really, we need an allergist on board as well. I liked our other allergist just fine but he didn't seem to know about FPIES other than to give us the diagnosis that we already pretty much figured on our own. I've searched basically every combination of FPIES, rice allergy, MN, allergist, GI and others that I could think of. A few of these searches brought me across the name Dr. Thomas Helm.

Upon researching Dr. Helm I found some fellow FPIES Mommies have seen him and have been pleased. One or two of these Moms babies have outgrown their FPIES for the most part or have a good handle on it. I called Dr. Helm's office in Maple Grove and talked with the triage nurse who told me that he has FPIES patients and definitely recognizes it. We made an appointment about 2 weeks ago.

Today was our big day. We left the house at 6:30 this morning to head down to Maple Grove. I had three pages of questions to hopefully have answered. I was satisfied with our visit.

We started at the beginning with Kara's vomiting and shock reactions. She definitely fits the category of FPIES babies in that sense. He asked if we had emergency treatment with those reactions and I explained to him why we didn't - how we got blown off, saying she had some sort of gastroenteritis. We now have strict orders that if she has any other vomiting episodes that are possibly FPIES related we need to get her to the ER immediately. This was really good to know. He said we can't observe her at home. Their blood pressure can drop to scary levels really quickly, not to mention how fast the dehydration kicks in with these babies. She needs to have an IV started immediately in case things get bad. He will be writing a letter with these instructions and a brief explanation for us to have with us anytime she needs emergency treatment. Hopefully this will eliminate anymore "fpiles" instances. :)

He doesn't believe that the diarrhea episodes that she gets from certain foods are actual FPIES reactions. He thinks of these episodes more as a food protein enteropathy. I'm not sure exactly what this means but I'll be researching this, trust me! :) He's very happy that we've seen a GI already and that we have a scope scheduled. He agrees that there may be some sort of sugars intolerance going on in her body and this will give us the answers and rule other things out. I was hoping he'd be on the same page as far as that goes!

I was sure to let him know that our GI won't call this FPIES, but instead calls it "multiple food allergies". To this he responded "this is why she's a GI and not an allergist". It's crazy, their different ways of thinking!

I asked what our future holds. He said typically about 50% of kids begin to outgrow some of the symptoms by age 3 but he says it's more like the age of 4 that he sees it start. When we get to this point there will be inpatient challenges - one visit for each true FPIES reactor food. We will be at Minneapolis Children's and she will be hooked up to an IV before it starts and she will eat the trigger food. I guess we will sit around and way and pray for no reaction. Since there is no test for this, it's the only way to know if they have outgrown any of it or not.

We need to make a follow up in six months and in the meantime he needs to be contacted with any reactions she has as well as reports of her scope, other GI appointments and needs weight checks every three months to make sure she's maintaining.

I was very pleased with Dr. Helm and think we've found a good doctor for our needs right now. Hopefully after this scope is over we can quit having to travel so much!