Food Protein-Induced Enterocolitis Syndrome: An Update On Natural History and Review of Management
I love new articles on FPIES. The above article was just published in August, and it is FULL of GREAT information. It is a terrific synopsis of what has been studied thus far in FPIES, and how it is currently best managed. Dr.Nowak-Wegrzyn has authored some great articles lately and it is exciting to see. Most exciting to see is the table on page 2 giving descriptions for Chronic and Acute FPIES. My son suffered from chronic FPIES which made his diagnosis more difficult to come to, as his acute reactions weren't happening as frequently as his chronic reactions. It was a very muddy picture, it still is a muddy picture because his body reacts chronically as we seek to introduce foods- he "builds" to a reaction vs. having an acute shock reaction from the first 1/2tsp of food. The acute shock reactions have been what has been studied over the past 20yrs. (rightly so due to their severity), now it appears groundwork is being laid to further study and define Chronic FPIES that so many other FPIES kids experience as well.
This is a great article, giving good descriptions for the history of FPIES and definitions of what is known about diagnosis and management of it. It really is exciting to see so much being studied, and further recognized in the past year.
Saturday, September 24, 2011
Sunday, September 4, 2011
An FPIES Toolbox
FPIES is a puzzle, it does not fit in a box. The diagnosis can be complex, untreated symptoms leading to new symptoms...it can be chronic or classic. No child seems to be the same- no triggers the same, response to treatments vary. It is medically complex.
Personally, I started my toolbox very empty, I began to fill it with: nuts and bolts (ie FPIES studies). Then came the nails that secures me in place with all the shared knowledge (ie FPIES families). Then a few hammer's of varying sizes (ie to hammer in a point)- did you know kids can react to meat because of the feed that an animal eats? And that they can react to the proteins in mothers breastmilk? Then a few other tools to fill in the gaps: Food Family Lists and Janice Vickerstaff guide to food introductions, as well as resources such as PIC and books like GAPS; all can fill in some holes here and there- used as tools to guide, taking bits and pieces of knowledge to apply to our puzzle. Some glue has come along and proven to be quite effective already- ever use gorilla glue? (ie Probiotics). Some screws were needed (diagnostic tests), not to test for FPIES but to rule out other related medical conditions (such as Eosinophilic Disorders and Celiac Disease. A good variety of screwdrivers is very helpful to tighten up the seams (ie Allergist, GI, Dietitian, Pediatrician). Every good household toolbox needs a flashlight, we found some light in research on Non-IgE food allergy to shed a good light on my thought process on individualization and the Immune and Gut involvement for the FPIES puzzle. A good toolbox to keep all of this in is essential, FPIES kids don't fit in any square box but the corners of Functional Medicine makes a good bag to carry all of this in.
Personally, I started my toolbox very empty, I began to fill it with: nuts and bolts (ie FPIES studies). Then came the nails that secures me in place with all the shared knowledge (ie FPIES families). Then a few hammer's of varying sizes (ie to hammer in a point)- did you know kids can react to meat because of the feed that an animal eats? And that they can react to the proteins in mothers breastmilk? Then a few other tools to fill in the gaps: Food Family Lists and Janice Vickerstaff guide to food introductions, as well as resources such as PIC and books like GAPS; all can fill in some holes here and there- used as tools to guide, taking bits and pieces of knowledge to apply to our puzzle. Some glue has come along and proven to be quite effective already- ever use gorilla glue? (ie Probiotics). Some screws were needed (diagnostic tests), not to test for FPIES but to rule out other related medical conditions (such as Eosinophilic Disorders and Celiac Disease. A good variety of screwdrivers is very helpful to tighten up the seams (ie Allergist, GI, Dietitian, Pediatrician). Every good household toolbox needs a flashlight, we found some light in research on Non-IgE food allergy to shed a good light on my thought process on individualization and the Immune and Gut involvement for the FPIES puzzle. A good toolbox to keep all of this in is essential, FPIES kids don't fit in any square box but the corners of Functional Medicine makes a good bag to carry all of this in.
I continue to look for new tools daily to fill my toolbox(bag) with, to help manage this chronic illness. . If you need some tools for the journey you are on right now- there is an excellent toolbox filled already with some nuts and bolts (such as an ER letter, articles to bring to your pediatrician to help diagnosis, and food journals,...) here: The FPIES Foundation
Friday, September 2, 2011
The FPIES Foundation
The FPIES Foundation is here!
"The FPIES Foundation is dedicated to overcoming the challenges of FPIES by offering tools for education, support, and advocacy to empower families and the medical community.... [It] is the collaborative effort of several FPIES families whose relentless journey has sparked the desire to help other families find their way. The FPIES Foundation strives to provide a credible and interactive support resource for this rare, oftentimes isolating diagnosis".
My entries on this blog have slowed down, in part due to my work as one of these families. I am among the founding families of The FPIES
The launch is official this week (refer to the press release on the website for details). And, personally, I am so proud of what we have accomplished thus far, and we have so much more - so many more programs being developed to assist families and the medical community, to provide much needed support, and education. We will be updating frequently, so check back often!
"The FPIES Foundation is dedicated to overcoming the challenges of FPIES by offering tools for education, support, and advocacy to empower families and the medical community.... [It] is the collaborative effort of several FPIES families whose relentless journey has sparked the desire to help other families find their way. The FPIES Foundation strives to provide a credible and interactive support resource for this rare, oftentimes isolating diagnosis".
My entries on this blog have slowed down, in part due to my work as one of these families. I am among the founding families of The FPIES
The launch is official this week (refer to the press release on the website for details). And, personally, I am so proud of what we have accomplished thus far, and we have so much more - so many more programs being developed to assist families and the medical community, to provide much needed support, and education. We will be updating frequently, so check back often!
Wednesday, July 27, 2011
A Rare Food Allergy Doctors Know Little About
Med Watch: A rare food allergy doctors know little about.
Another FPIES family in the news. The family's story is something that hits close to home for many FPIES families...."I googled baby vomits rice cereal"- wow, did we all do that? Because who in the heck is allergic to rice? FPIES kids are, it's bizarre but very real, and scary. This mom's account of her daughter's reaction is an emotional account for any FPIES parent, as her daughter is one of the numbers of FPIES that went into full shock with the ingestion of rice. The statistics show that ~20% of FPIES children do (although I would dispute that number to be much higher based on what is shared in support groups). The interview is a window into an FPIES families world.
The news report includes an interview from the family physician who helps manage their daughters care, with emphasis on the need for ruling out other conditions, and the symptoms caused from an FPIES reaction.
Thank you to Ginny and her mom for a great awareness story on FPIES!
Another FPIES family in the news. The family's story is something that hits close to home for many FPIES families...."I googled baby vomits rice cereal"- wow, did we all do that? Because who in the heck is allergic to rice? FPIES kids are, it's bizarre but very real, and scary. This mom's account of her daughter's reaction is an emotional account for any FPIES parent, as her daughter is one of the numbers of FPIES that went into full shock with the ingestion of rice. The statistics show that ~20% of FPIES children do (although I would dispute that number to be much higher based on what is shared in support groups). The interview is a window into an FPIES families world.
The news report includes an interview from the family physician who helps manage their daughters care, with emphasis on the need for ruling out other conditions, and the symptoms caused from an FPIES reaction.
Thank you to Ginny and her mom for a great awareness story on FPIES!
Tuesday, July 19, 2011
Food Protein Induced Enterocolitis Syndrome: Diagnosis and Prognosis for FPIES
I always enjoy finding further updates, as well as medical and personal insights, written on FPIES. The perspectives of this little known clinical diagnosis are always interesting to read when you have a child with FPIES. View two well written articles here on Helium: Food Protein Induced EnterocolitisSyndrome: Diagnosis and Prognosis for FPIES.
The first, written by Dr.Nichole Evans is an informative synopsis of the the Up To Date article reviewed and updated in May 2011 on Food protein-induced proctitis/colitis, enteropathy, and enterocolitis of infancy and written by Dr. Alan M Lake, Associate Professor of Pediatrics Johns Hopkins University School of Medicine.
Dr.Evans outlines the Up To Date article nicely. "Food protein induced enterocolitis syndrome, also known as FPIES, is the most severe of all food protein-induced gastrointestinal diseases in infants". She goes on to outline the diagnosis of FPIES, based on recognition of symptoms and by monitoring response to elimination of offending proteins as well as endoscopy to rule out other conditions that may cause similar symptoms in infants. She concludes that "FPIES is an uncommon allergic disorder diagnosed by clinical features, endoscopic investigation and response to dietary management".
The next, by Dr. Pandula Siribaddana, provides a summary of the diagnosis and prognosis of FPIES utilizing two comprehensive references:
1). In 2008: "Enterocolitis Syndrome: Consensus Recommendations for Diagnosis and Treatment" written by the Japanese Research Group for Neonatal, Infantile, Allergic Disorders. Which I also, personally, have found to be a useful resource of information.
2). In 2009: Food Protein-Induced Enterocolitis Syndrome (FPIES) - a review from the UK Current Allergy & Clinical Immunology. Which happens to be one of my personal top resource articles on FPIES.
Dr. Siribaddana's article starts strong with "If ever there were a disease, which has been extensively under diagnosed and poorly managed, food protein induced enterocolitis syndrome (FPIES) would be right up in the list". He goes on to highlight the "possibility of serious complications, if not managed properly" and that "it's pathological basis is a svere cell-mediated-hypersensitivity reaction (non-IgE mediated) within the gut mucosa". His review provides the five-step process for diagnostic criteria set forth by the Japanese Research Group for Neonatal, Infantile, Allergic Disorders; which covers the symptoms, differential diagnosis, appropriate milk, body weight gain, and food challenges.
He concludes with a pivotal message to physicians, "although the paper was a consensus statement, it does not necessarily mean all affected infants and children should be managed in a similar manner. However, following the guidelines would reduce the chances of missing FPIES, which would bring long-term benefits and improved prognosis for sufferers".
The first, written by Dr.Nichole Evans is an informative synopsis of the the Up To Date article reviewed and updated in May 2011 on Food protein-induced proctitis/colitis, enteropathy, and enterocolitis of infancy and written by Dr. Alan M Lake, Associate Professor of Pediatrics Johns Hopkins University School of Medicine.
Dr.Evans outlines the Up To Date article nicely. "Food protein induced enterocolitis syndrome, also known as FPIES, is the most severe of all food protein-induced gastrointestinal diseases in infants". She goes on to outline the diagnosis of FPIES, based on recognition of symptoms and by monitoring response to elimination of offending proteins as well as endoscopy to rule out other conditions that may cause similar symptoms in infants. She concludes that "FPIES is an uncommon allergic disorder diagnosed by clinical features, endoscopic investigation and response to dietary management".
The next, by Dr. Pandula Siribaddana, provides a summary of the diagnosis and prognosis of FPIES utilizing two comprehensive references:
1). In 2008: "Enterocolitis Syndrome: Consensus Recommendations for Diagnosis and Treatment" written by the Japanese Research Group for Neonatal, Infantile, Allergic Disorders. Which I also, personally, have found to be a useful resource of information.
2). In 2009: Food Protein-Induced Enterocolitis Syndrome (FPIES) - a review from the UK Current Allergy & Clinical Immunology. Which happens to be one of my personal top resource articles on FPIES.
Dr. Siribaddana's article starts strong with "If ever there were a disease, which has been extensively under diagnosed and poorly managed, food protein induced enterocolitis syndrome (FPIES) would be right up in the list". He goes on to highlight the "possibility of serious complications, if not managed properly" and that "it's pathological basis is a svere cell-mediated-hypersensitivity reaction (non-IgE mediated) within the gut mucosa". His review provides the five-step process for diagnostic criteria set forth by the Japanese Research Group for Neonatal, Infantile, Allergic Disorders; which covers the symptoms, differential diagnosis, appropriate milk, body weight gain, and food challenges.
He concludes with a pivotal message to physicians, "although the paper was a consensus statement, it does not necessarily mean all affected infants and children should be managed in a similar manner. However, following the guidelines would reduce the chances of missing FPIES, which would bring long-term benefits and improved prognosis for sufferers".
Sunday, July 17, 2011
FPIES makes National News on Good Morning America!
Parents Limit Child to less than 10 foods is the title of the Good Morning America segment dedicated to raising awareness of FPIES through a family's story. This family, also has started a research Fund, I have mentioned here before: FPIES United Family Fund.
The title is deceiving but eye catching and eye catching is awareness. We need to continue to raise awareness, that from the outside looking in, despite how it looks from the outside- our children are sick and our families are struggling because of the lack of awareness and treatment plans.
Take a moment to view the video, if you have not already watched it. Good Morning America did a good job in covering several of the aspects that FPIES families share.
The title is deceiving but eye catching and eye catching is awareness. We need to continue to raise awareness, that from the outside looking in, despite how it looks from the outside- our children are sick and our families are struggling because of the lack of awareness and treatment plans.
Take a moment to view the video, if you have not already watched it. Good Morning America did a good job in covering several of the aspects that FPIES families share.
Saturday, July 9, 2011
"In truth, question everything"....
This blog post on an allergy blog I follow: Grading the Severity of your Allergy: Sensitivity vs. Reaction Level, gives good advice on how to decipher your reaction levels, your severity. What do you (or your child) react to? Everything in the air? Cross contamination? Trace proteins? Food families? Through breastmilk? Through feed from the animal contaminating the meat? Through formula? On the skin?
With Non-IgE allergy, just as with an IgE Allergy, even the blood and skin tests will not tell the severity of an allergy; it will only tell the positive antibody production and the probability of reaction. The only tried and true way to tell a person's reaction level is by testing it with elimination and challenge. Eliminate the food from the diet, if symptoms subside, there are good chances you are allergic and need to eliminate that food, and all derivatives of it from the diet. Some reaction symptoms are obvious enough you don't have to, nor would you want to, challenge the food. A challenge would consist of a re-introduction of the food once suspected symptoms have resolved. This challenge can also help determine severity of the allergy; as addressed in the above blog article. Some people react to any and all minute derivatives or cross contamination of the allergen, some can handle derivatives or oils, etc. The only true way to know is to challenge, and in the meantime- question everything.
With Non-IgE allergy, just as with an IgE Allergy, even the blood and skin tests will not tell the severity of an allergy; it will only tell the positive antibody production and the probability of reaction. The only tried and true way to tell a person's reaction level is by testing it with elimination and challenge. Eliminate the food from the diet, if symptoms subside, there are good chances you are allergic and need to eliminate that food, and all derivatives of it from the diet. Some reaction symptoms are obvious enough you don't have to, nor would you want to, challenge the food. A challenge would consist of a re-introduction of the food once suspected symptoms have resolved. This challenge can also help determine severity of the allergy; as addressed in the above blog article. Some people react to any and all minute derivatives or cross contamination of the allergen, some can handle derivatives or oils, etc. The only true way to know is to challenge, and in the meantime- question everything.
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