A medical team for our little man? How many more doctors will it take to solve all his puzzles? FPIES is a frustrating diagnosis in that it is not well known or understood mechanisms. We are seeking further resources for our team here so we can stay local to get Little Man's care for a chronic illness.
On Wednesday, we took Little Man to see a 2nd allergist. We love our first allergist but he is a few states away so we are looking for more local support and resources for our team here for Little Man's continued care of this chronic illness.
The drive was an hour and a half and we went as a family. Little man's brothers are getting used to doctor appointments being part of the normal.
This allergist was friendly and after reviewing his history, confirms that Little Man clearly has classic FPIES to some foods and not-so-typical reactions to others (tapioca). He speculated this is likely from the chronic inflammation and once this is healed, food introductions/tolerance should become more “FPIES normal”. He has not had patients that have no safe foods/no diet.
No foods are safe, all food can be a trigger- it is all about the trials. Avoid the common triggers for now, start with fruits and veggies and grains. He suggested wheat, quinoa, carrots, spinach. Meats may be more difficult to digest right now, agreed lamb may be good, also suggested pork. Emphasized these are only suggestions- it is really up to us what we would like to do. Agrees with Dr.P at CHOP that goal should be a tiny menu and hold for awhile with Sam being that he has multiple triggers.
Recommends small incremental doses (1oz/1tsp/day and building)- monitoring for signs of symptoms of intolerance. He does not see need for hospital trials for all food trials (we’d be in the hospital all the time) but emphasized/stressed to have a plan and head to the ER at the very first signs of reaction. Acknowledges that we clearly can recognize early signs and to not wait for the vomiting with Sam because he is too fragile with the anemia.
Reminded that he already has a diagnosis, and now a 2nd Allergist has confirmed it. Carry an ER letter and information on FPIES (provided 2 journal articles- that I already have, please can someone give me one I don't yet have?) and tell new doctors not familiar with Sam and FPIES that “This is his diagnosis, it is called FPIES. He has received this diagnosis from an Allergist; here is some information about it”. They don't need to diagnosis him, they need only to learn about his diagnosis to help him. He spelled out what I have been trying to do since his diagnosis.
He will send letters of FPIES explanation and ER letters to our "team" here doctors here and a copy to us to carry with at all times.
It was a beneficial visit and we will wait to see if it becomes fruitful. My hope is having a MD with familiarity with FPIES that our team here can/will work with will help everyone to learn....to help Little Man and to help the next little one's that come behind him with this illness.
All of this only reminds us that "Little Man isn't under the doctors care- he is under our care; doctors are there for advisement on his medical needs." (direct quote from Little man's daddy). We coordinate his care, we research his diagnosis, we monitor his baseline and labs and weights and compounding diagnosis', we decide what foods to trial and when. This allergist helped us to see that once again.
We went to Whole foods right after the appt. We picked up raspberries, blueberries and baby cucumbers. This morning, we tried raspberries - he would not even touch them, so I moved on to the blueberries. He played with them but wouldn't let one touch his lips. So, I got brave (thanks to the allergist) and cooked him some hemp milk/millet porridge- he LOVED it!! Lets hope it loves him....the only thing we can do is wait and see...so stay tuned (and pray)!!
Showing posts with label Allergist. Show all posts
Showing posts with label Allergist. Show all posts
Thursday, September 30, 2010
Sunday, August 8, 2010
Mom Driven Diagnosis
When I first was researching FPIES, I began researching through the medical journal articles- just as I had with other countless hours of research I was doing to try and connect something that would make sense to what was going on with my little man. I read through almost all of the medical journal articles but there really are only a dozen or so of those specific to FPIES. So, I started going into support groups (Facebook, Kids with Food Allergys, Babycenter are the main/active ones). This was the next obvious step --listen to what other mom's were saying....I kept hearing things like "mom-driven diagnosis" and not to mention all the things that made it sound like all the moms were standing in my living room!
Mom driven diagnosis is where I began to realize that yes, the mom's that are "in the trenches" ARE what is driving the recognition and continued research on this FPIES beast. And that I really did know what was best for my child...and that what I was learning from the other moms was more specific than the doctors that didn't know about FPIES. Diagnosis and treatment has come such a long way in just 5yrs, and I feel SOOOO fortunate for the moms that have been before me that have shared their story's, thus helping our situation....my hope would be the same for the mom's that follow us. Because even though I shudder that other little one's have to go through this- it is happening and so to have a place to go, a place of support and guidance is SO INVALUABLE!
The big hospitals that know FPIES well (Mt.Sinai and Children's Hospital of Philadelphia) have teams of knowledgable doctors. But not all of us live in or near NY or PA. There are plenty of other Allergists throughout the country that have become familiar with FPIES as well. Allergists are at the fore-front of diagnosis and treatment but a GI doctor, a Dietitian and a Pediatrician are all part of the team. These "big" hospitals that treat FPIES utilize this team approach. It has been my goal to duplicate that for my son, here at our hospital.
I value the assistance from the doctors, specialists and dietitians to help me keep my little man healthy. The doctors that have experience in FPIES have a wealth of information and assistance; and the ones that don't can catch up very quickly- they already have their knowledge in kids, allergys, GI disorders.
The two things that a doctor has to do to help a child with FPIES: 1. acknowledge the diagnosis and 2. listen to the parents.
Our Allergist at CHOP is incredibly knowledgable - because he has helped hundrends of kids with FPIES and thousands of other allergic disorders. I will never regret making the trip half way across the country to go to CHOP to meet with the expert allergists for the FPIES diagnosis. After much review of all the literature we could get a hold of, our pediatrician agreed that little man has FPIES, but we wanted to know from a specialist that has diagnosed and treated it before -- for nothing else but little man's health. We needed to know what the best treatment plan is. We were given a good treatment plan, and our Allergist remains a strong support for us as we continue to navigate through these murkey waters.
The other step that has been invaluable was my request for a consult to a dietitian (here and at CHOP -- it was not suggested, I requested it). FPIES is all about food, dietitian's are a great support and advocate for the little one's
I truly believe that the parents are a huge and vitally important member of the team, also the lead member in treating these little kiddo's. Our Allergist has given us good advice on how he best is able to treat such a clinical diagnosis in a medical community that operates on objectives...."listen to the parents"..."if the parents say there is something wrong..."..."there are no labs or tests to test for FPIES, if I feel a lab is needed, I know I need to talk to the parents again". We respect this because we know our son. We have had to follow his development, his tolerances and intolerances, his "normal", his sick days for every second of his life.
We. Know. Our. Son.
Navigating the specialists, and playing Dr.Mom in search of a diagnosis makes one want to put all the medical field behind us and just do it alone. It is a very frustrating diagnosis in this way. For me, I could go it alone -- back when things were rough with the medical community trying to convince them of what was happening with our son, my husband urged with me for us to go it alone -- because he completly trusts my ability to do so. There is a drive to do so -- he is our son afterall, I should be able to care for him- I DO know what is best for him...only, with FPIES, it is like being a first time mom with a newborn baby and you look to check on that thing they are doing is normal only to find out that one around you knows anything about newborn babies. So, even if I could possibly understand all of FPIES (which I never will), and even if the doctors aren't familiar with treating FPIES, there are co-factoring/co-compounding issues that arise and I feel it is helpful for the doctors to have a good baseline of where my son's normal is and what steps we have taken. But we are absolutly leaders on his medical team.
Bottom line- mommy knows best. Trust your instincts.
Are you reading this because you suspect your little one might have FPIES? Like I said, the support groups of mom of FPIES kids has been great. FPIES is a little known diagnosis. The moms are raising awareness but there are still way too many doctors that are not familiar with it. So, if you're looking for a place to start with journal articles to read and bring to your pediatrician. I have started a list. I am linking it here- please note it is a work in progress.
http://fpiesmudpies.blogspot.com/2010/06/do-you-suspect-fpies.html
Mom driven diagnosis is where I began to realize that yes, the mom's that are "in the trenches" ARE what is driving the recognition and continued research on this FPIES beast. And that I really did know what was best for my child...and that what I was learning from the other moms was more specific than the doctors that didn't know about FPIES. Diagnosis and treatment has come such a long way in just 5yrs, and I feel SOOOO fortunate for the moms that have been before me that have shared their story's, thus helping our situation....my hope would be the same for the mom's that follow us. Because even though I shudder that other little one's have to go through this- it is happening and so to have a place to go, a place of support and guidance is SO INVALUABLE!
The big hospitals that know FPIES well (Mt.Sinai and Children's Hospital of Philadelphia) have teams of knowledgable doctors. But not all of us live in or near NY or PA. There are plenty of other Allergists throughout the country that have become familiar with FPIES as well. Allergists are at the fore-front of diagnosis and treatment but a GI doctor, a Dietitian and a Pediatrician are all part of the team. These "big" hospitals that treat FPIES utilize this team approach. It has been my goal to duplicate that for my son, here at our hospital.
I value the assistance from the doctors, specialists and dietitians to help me keep my little man healthy. The doctors that have experience in FPIES have a wealth of information and assistance; and the ones that don't can catch up very quickly- they already have their knowledge in kids, allergys, GI disorders.
The two things that a doctor has to do to help a child with FPIES: 1. acknowledge the diagnosis and 2. listen to the parents.
Our Allergist at CHOP is incredibly knowledgable - because he has helped hundrends of kids with FPIES and thousands of other allergic disorders. I will never regret making the trip half way across the country to go to CHOP to meet with the expert allergists for the FPIES diagnosis. After much review of all the literature we could get a hold of, our pediatrician agreed that little man has FPIES, but we wanted to know from a specialist that has diagnosed and treated it before -- for nothing else but little man's health. We needed to know what the best treatment plan is. We were given a good treatment plan, and our Allergist remains a strong support for us as we continue to navigate through these murkey waters.
The other step that has been invaluable was my request for a consult to a dietitian (here and at CHOP -- it was not suggested, I requested it). FPIES is all about food, dietitian's are a great support and advocate for the little one's
I truly believe that the parents are a huge and vitally important member of the team, also the lead member in treating these little kiddo's. Our Allergist has given us good advice on how he best is able to treat such a clinical diagnosis in a medical community that operates on objectives...."listen to the parents"..."if the parents say there is something wrong..."..."there are no labs or tests to test for FPIES, if I feel a lab is needed, I know I need to talk to the parents again". We respect this because we know our son. We have had to follow his development, his tolerances and intolerances, his "normal", his sick days for every second of his life.
We. Know. Our. Son.
Navigating the specialists, and playing Dr.Mom in search of a diagnosis makes one want to put all the medical field behind us and just do it alone. It is a very frustrating diagnosis in this way. For me, I could go it alone -- back when things were rough with the medical community trying to convince them of what was happening with our son, my husband urged with me for us to go it alone -- because he completly trusts my ability to do so. There is a drive to do so -- he is our son afterall, I should be able to care for him- I DO know what is best for him...only, with FPIES, it is like being a first time mom with a newborn baby and you look to check on that thing they are doing is normal only to find out that one around you knows anything about newborn babies. So, even if I could possibly understand all of FPIES (which I never will), and even if the doctors aren't familiar with treating FPIES, there are co-factoring/co-compounding issues that arise and I feel it is helpful for the doctors to have a good baseline of where my son's normal is and what steps we have taken. But we are absolutly leaders on his medical team.
Bottom line- mommy knows best. Trust your instincts.
Are you reading this because you suspect your little one might have FPIES? Like I said, the support groups of mom of FPIES kids has been great. FPIES is a little known diagnosis. The moms are raising awareness but there are still way too many doctors that are not familiar with it. So, if you're looking for a place to start with journal articles to read and bring to your pediatrician. I have started a list. I am linking it here- please note it is a work in progress.
http://fpiesmudpies.blogspot.com/2010/06/do-you-suspect-fpies.html
Saturday, July 31, 2010
"Hi!"
Little man can't stop saying it! To us, to his brothers, to friends, to strangers, to doctors, to nurses. The mask has been lifted, even if just briefly, again. Little man has lived so many of his days in pain, that he doesn't waste any time getting down to playing and learning new milestones, and words when he is pain free. He can say "hi","hi-5", "daddy", "momma", "woof", "quack", "neigh", "off", "on", "all done". He can give hi-5, wave bye-bye, clap, ask for his bottle, and he's learning puzzles. He also can walk and run of course! :) It is simply amazing to us that he catches up so fast to these milestones when he has less time to practice (because he has spent so much time in our arms, in pain).
We are very grateful we have pulled him out of his failure to thrive state he was heading down. Many FPIES kiddo's have this somewhere in their days, sometimes before diagnosis when little is understood about what is going on, and sometimes after when the right diet is being identified with food trials and eliminations. We have been running close to the wire for so many months, and we do our best to stay on top of his illness so we can learn more about how it is affecting him.
Little man had a follow up with his pediatrician yesterday (he now weighs in at 20#12oz!!!). The major Children's Hospitals (Mt.Sinai, CHOP, Jewish National) utilize a team approach for following these kiddo's and I am trying to duplicate that here- it makes perfect sense. Pediatrician's are at the center of their care, as they help manage the care of the "team" when so many things come into play- Allergist recommendations, GI work ups, Dietitian follow-ups. It all has to be monitored closely to be sure he stays thriving. I know this is where it would help to be at a place like CHOP (where our Allergist is) but we don't live in or near PA, so we are trying to make the best of what we have here. And what we have here, practically in our backyard, is one of the top leading medical facilities in the country- in the world! The doctors that want to learn about FPIES have been great, and they are really trying to help. Our pediatrician is great, and has been through all of this....but I still feel a disconnect between understanding FPIES and helping Little Man. I wish I could figure out how to get this better connected. The many days, months, and now going on a year of Little man being ill and monitoring and connecting his symptoms, and finding a diagnosis to explain it all, and managing his care, on top of him continuing to be sick, and on top of the other everyday things in life- our other children and their needs, our jobs, our home, etc....is all starting to get overwhelming when I also still feel I need to teach everyone about FPIES while trying to connect how it affects Little Man...most especially when he is as ill as he was before being hospitalized. We are trying so hard to find his baseline so we can build his tiny menu. It will be more difficult to do food trials when he is still having blood in stools and waking up screaming at night.
We are very grateful we have pulled him out of his failure to thrive state he was heading down. Many FPIES kiddo's have this somewhere in their days, sometimes before diagnosis when little is understood about what is going on, and sometimes after when the right diet is being identified with food trials and eliminations. We have been running close to the wire for so many months, and we do our best to stay on top of his illness so we can learn more about how it is affecting him.
Little man had a follow up with his pediatrician yesterday (he now weighs in at 20#12oz!!!). The major Children's Hospitals (Mt.Sinai, CHOP, Jewish National) utilize a team approach for following these kiddo's and I am trying to duplicate that here- it makes perfect sense. Pediatrician's are at the center of their care, as they help manage the care of the "team" when so many things come into play- Allergist recommendations, GI work ups, Dietitian follow-ups. It all has to be monitored closely to be sure he stays thriving. I know this is where it would help to be at a place like CHOP (where our Allergist is) but we don't live in or near PA, so we are trying to make the best of what we have here. And what we have here, practically in our backyard, is one of the top leading medical facilities in the country- in the world! The doctors that want to learn about FPIES have been great, and they are really trying to help. Our pediatrician is great, and has been through all of this....but I still feel a disconnect between understanding FPIES and helping Little Man. I wish I could figure out how to get this better connected. The many days, months, and now going on a year of Little man being ill and monitoring and connecting his symptoms, and finding a diagnosis to explain it all, and managing his care, on top of him continuing to be sick, and on top of the other everyday things in life- our other children and their needs, our jobs, our home, etc....is all starting to get overwhelming when I also still feel I need to teach everyone about FPIES while trying to connect how it affects Little Man...most especially when he is as ill as he was before being hospitalized. We are trying so hard to find his baseline so we can build his tiny menu. It will be more difficult to do food trials when he is still having blood in stools and waking up screaming at night.
Monday, July 12, 2010
Mudslides
Our rollar coaster ride has hit a mudslide....the blood in his stool, then not eating well, then starting to refuse to eat, then a viral illness, everything started to look fuzzy through the haze of mud.....
Little man continues to run unexplained fevers and generally just feeling lousy- lots of crying like he hasn't done in a long time....it looks to be "just" some virus that he is fighting...day 5 of fevers today. So, we just have to keep a close eye on him.
He drank 70+oz of hemp milk today!!!!! But he was hungry all day....unfortunatly the hemp milk does not have enough carbohydrate and he does ok for a day or two but then it just caves on him and he needs the carb. I tried a few times adding the tapioca and cane sugar mix but he was refusing it, and gagging on it- and I can not have him associating this new formula with anything negative.
So tonight,after a very busy day, I started really trying to pinpoint where this mudslide started (other than the blood in stool from the neocate)- but that is where everything started to spiral and unfortunatly making it look like it was all connected. After much thought on it and careful review of my logs; I think it is the cane sugar he is not liking. He's reacted to things with sugar before, so maybe he has an aversion to sugar (or something more). Still not sure but for this instance, it seems that when I started experimenting with small amounts of adding cane sugar, things started to slide down this mudslide; that combined with his body fatigue from Neocate exposure after corn fail, and this virus- all just got to be too much for his tired little body.
I have added the plain tapioca starch back in this evening and he was almost immediatly a happier boy; so hopefully this works and I will stay away from the cane sugar for now -- will just have to figure out another way to get more carbs in him. His allergist at CHOP keeps suggesting a barley trial, but I am SOOO leary of grains right now!- I'm SO leary of ANYTHING that will have a chance of making him sick!!
But we do have to come up with some foods we think he will "pass" and be "safe" foods to expand his diet. I'm thinking potato is the better option for next trial- it is not a grain but it is a starch and would give him the carbs he needs, and so much more! Also, looking at Arrowroot starch. Need to get him healthier first though....
I keep searching for that little barometer that tells us that he is ready for a food trial, that his illness is or isn't related to food intolerance, or when a food is going towards an FPIES reaction.....still can't find it!!
Little man continues to run unexplained fevers and generally just feeling lousy- lots of crying like he hasn't done in a long time....it looks to be "just" some virus that he is fighting...day 5 of fevers today. So, we just have to keep a close eye on him.
He drank 70+oz of hemp milk today!!!!! But he was hungry all day....unfortunatly the hemp milk does not have enough carbohydrate and he does ok for a day or two but then it just caves on him and he needs the carb. I tried a few times adding the tapioca and cane sugar mix but he was refusing it, and gagging on it- and I can not have him associating this new formula with anything negative.
So tonight,after a very busy day, I started really trying to pinpoint where this mudslide started (other than the blood in stool from the neocate)- but that is where everything started to spiral and unfortunatly making it look like it was all connected. After much thought on it and careful review of my logs; I think it is the cane sugar he is not liking. He's reacted to things with sugar before, so maybe he has an aversion to sugar (or something more). Still not sure but for this instance, it seems that when I started experimenting with small amounts of adding cane sugar, things started to slide down this mudslide; that combined with his body fatigue from Neocate exposure after corn fail, and this virus- all just got to be too much for his tired little body.
I have added the plain tapioca starch back in this evening and he was almost immediatly a happier boy; so hopefully this works and I will stay away from the cane sugar for now -- will just have to figure out another way to get more carbs in him. His allergist at CHOP keeps suggesting a barley trial, but I am SOOO leary of grains right now!- I'm SO leary of ANYTHING that will have a chance of making him sick!!
But we do have to come up with some foods we think he will "pass" and be "safe" foods to expand his diet. I'm thinking potato is the better option for next trial- it is not a grain but it is a starch and would give him the carbs he needs, and so much more! Also, looking at Arrowroot starch. Need to get him healthier first though....
I keep searching for that little barometer that tells us that he is ready for a food trial, that his illness is or isn't related to food intolerance, or when a food is going towards an FPIES reaction.....still can't find it!!
Thursday, July 8, 2010
Many faces of Little Man
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The many faces of Little Man....having more good days than bad lately. He learned how to High Five this week- he even says it!! He loves to make all sorts of animal sounds. Loves to play peek-a-boo and clap his hands. He gives the best hugs and kisses. He is such a loveable little guy!
Despite having blood in his diaper yesterday he had a good day, he has not had any today but has had very loose stools all day...and he clearly isn't feeling good and now the detective game begins again....what is causing all this? The Neocate? The new changes with formula? A viral illness?
I called our Allergist right away this morning, he confirmed my thought process that the trace proteins in the Neocate are continuing to assualt his intestines and now has moved to causing colitis. He urged that we stop Neocate immediatly. We notified our Dietitian of our new curve ball and she worked all afternoon on finalizing his specific new formula- Hemp base, carbohydrate sources, complete amino acid source, vitamins and minerals and a little extra fats....my kitchen looks more like a science lab! But I am SOO excited at the possibility of continuing to see his true personality shine ALL day instead of just a few hours here and there, or not at all because it is buried underneath all the pain. Today has not gone as well for him, I suppose he just feels lousy (Allergist said he might -- encouraged me to give him lots of pedialyte today...well, unfortunatly Pedialyte is all corn derived as well). He seems to be running a low grade fever this afternoon, so trying to keep an eye on that. He just couldn't settle down for a nap although clearly tired. I gave him some of his compounded ibuprofen and that helped A LOT -- which is great but also confirms to me that he is in pain. The ibuprofen wore off before it was time to give him more, I tried everything and he was not happy - so finally gave him more ibuprofen and he finally gave in to sleep.
I do not like not knowing what is wrong, or worse- how to stop it or help him....it simply breaks my heart. Hopefully he will get good rest tonight and feel better in the morning.
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