Having no standard treatment protocols or relevant studies on FPIES here in the U.S. has caused some major heart ache for many moms. While many fight for answers, direction, or the insurance company to pay for an amino acid based formula so that their infant can thrive, other parents have been faced with accusations of Munchhausen by proxy when doctors can not make sense of things in their little box of western medicine. In response to this, two communities of moms have evolved - one on facebook, and one on baby center. Other groups have evolved, such as facebook's PIC page, and the FPIES United Family Fund. There is some over lap, but the baby center community has by far been larger and included more FPIES moms worldwide. I discovered these groups near the beginning of Ellie's journey and during the time of desperation that all FPIES moms seem to go through - is there anyone else out there or is is just MY child??
This community of (mostly) moms has helped me to answer questions, provided support when things look grim, and share experiences in an effort to find similarities that might make a springboard for treatment. Sometime back, right before the 'remove-the-formula-and-put-her-on-only-almond-milk' crisis for Elianna, one of those bold and very committed moms posted information about a doctor in New Jersey who was doing research on Tcells and immune system disease, primarily from the perspective of connecting it with autism. She had provided some amazing help for some moms already, and was currently conducting a study that FPIES children could participate in.
Excitement quickly erupted in this community of moms, and I caught the fever. Who is this doctor? What does she know? How is she helping? Should we travel? How do we get in? How do we qualify? Suddenly there appeared to be hope in a medical world that has previously only answered 'we don't really know' and 'there is not treatment for that'.
Jason brought me crashing back to reality when he reminded me that we don't have the money to get there, even if we could get an appointment. But I am confident that if we are meant to go, God will find a way, so I called. I called and left two voice mail messages, and then sent a lengthy email addressed to the doctor. Yet I heard nothing back. Other moms were making appointments, and the 'we got in!' and 'we got an appointment!' comments seemed to be everywhere except for our Ellie.
I stepped back and decided we would wait. The mom's that had appointments and lived closer promised to report back with more information and details on their experiences, so we waited. And the next thing I heard was that this doctor would see anyone in her private practice, and not turn anyone away who was willing to travel. This was great news!
As moms have begun to share their experiences, I have developed more questions than answers. There has been talk of immuno-suppressant drugs, blood tests, probiotics, anti-fungal medications, and amino acid formulas, just to highlight a few. The biggest fuzz in my head is connected to a large panel of blood tests that this doctor conducts to identified triggers and paint a more thorough picture of the condition of each individual immune system. Explanations and comments from other moms have included 'more to come', or 'waiting for the results to get answers', or 'hopefully we will know more soon', but this does not tell me what is being tested, or why. I don't even truly need to understand how it is done, but who does blood work without saying 'we are looking for such-and-such'? Without this piece, I will not truly know if it might be beneficial for us to travel there, so we wait.
What IS clear is that this doctor recognizes the need for individualized treatment, is brilliant, and has great understanding of protein intolerance and intestinal health. But she does not have all of the answers. And perhaps the key word is 'yet'. It is true that if money was not an issue, I would have boarded a plane long ago. But co-payments, specialists, compounded medications, and other expenses have already snatched up our spare pennies. At this point I can not justify packing up our bone broth and trekking across the country without hearing an inkling of hope. I have worked hard to find hope in the midst of no answers, and blood tests that simply say 'she is bad' or 'she can't eat' would not do anything for us. What am I missing? What questions could she answer for us at this point? I am not sure. So right now we wait.
I completely agree Nicole. I am on the fence myself and have our peditrician in my ear telling me I need to "normalize" Oliva and just stick with our doctor at John Hopkins. The problem is the pediatrician is only seeing the black and white that Olivia has gained weight and is doing better but doesn't see all of the gray areas, semi fails, croupy reactions that could or could not be food related, etc. So we have an appointment but are now not completely convinced that it is going to be worth all of the trouble. Olivia has developed a trauma type reactions to doctors and subjected her to unnecessary tests would be horrible for her. UghReplyDelete
Megan ~the goal would be to find a treatment plan, right? And no one has had their blood work come back to determine that as a possibility yet (that I know of). And everyone has their own set of circumstances to weigh. If we lived closer or had the $$ I would schedule an appointment just to speak with her first hand. And if you do not have a treatment doctor that has helped, it would be comforting to go see such an expert that would help. What does your mommy gut say?ReplyDelete
I wonder if you could have your doctor run the blood tests that the doctor in New Jersey would. Could they consult with her and send her the blood results as well as the other tests that Elianna has had?ReplyDelete
I agree with your comment to Megan - if we had the money and lived closer it would be great to have an appointment if for no other reason than to get answers to your questions above.ReplyDelete
Back to reality... it is difficult to think about making this trip and finishing up with a bunch of old information and/or no hope.
You are making huge strides Nichole - keep going! God has marked this race out for you. He knows every turn and pot hole and He sees the finish line from where he stands. Your actions are an act of faith - and moving in that direction is putting your "works" behind that faith!
Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.
Diane ~ hmmm. I dont think so. One of the things that makes this doctor amazing is that she is doing research and looking for blood markers that are not a recognized part of treatment yet. She even has a hard time explaining what they are looking for, and I think it may be because it is more of a 'I will know when I see it' situation. But another mom I know is actually there seeing her today, and I am sure she will bring good information on long distance treatment options and if we should travel. That being said, it is something I will look in to.ReplyDelete