Planning and approaching Ellie's birthday this year was much less dramatic than her first birthday. First birthdays are full of expectations and ideas, and with FPIES I had to grieve the loss of the social accepted norms in order to embrace our new normal. This year I was determined to create a fun second birthday for Ellie that was food free, and as stress free as possible.
The first thing I realized was that I did not want to have the party in my home where I would be expected to provide food, or I would have to watch for cross contamination. The second thing I realized was that I still wanted to have the party nearby so that Ellie could enjoy it on her schedule, and I would not have to pack and bring a truck load of her broth formula. I began calling around, and the third thing I noticed was that all party packages came with food!
I took a step back. Balloons are a risk for Ellie due to corn starch. Food is a risk to Ellie. What can we do for a party that everyone would have fun, and these things would not be an issue. The zoo! The zoo would be a place that all ages could enjoy.
Hopeful, I sent an email to their birthday party coordinator, explaining our situation and asking if they would be willing to let us reserve their picnic area and hold a birthday party without the food portion of their packages. (By the way no balloons are allowed in the zoo for the safety of the animals, and monkeys like Ellie) I cross my fingers, and sure enough! Their events coordinator was fantastic. Kind, considerate, and more then gracious, she helped tailor a birthday party just for Ellie.
Our birthday invitations explained that our party would be for an hour in the zoo picnic area reserved just for us, but that they could arrive early and stay late to enjoy the entire day in celebration of Ellie turning two. Guests were welcome to pack a lunch or eat in the park, but thank you for understanding that there would be no cake or food provided due to Ellie's food free day. Instead there were more than enough carousel rides for everyone, and even though it was not part of the package, we were all treated to a train ride as well.
By the end of our time at the zoo, I was convinced I had made the right choice. I was so pleased with the fun had by all, especially Ellie, and especially her great grandparents who are in their 70's and who enjoyed the carousel and train rides as well. I would highly recommend the Sacramento Zoo as an FPIES and food allergy friendly birthday choice, and we may choose to do it all over again next year!
Showing posts with label birthday. Show all posts
Showing posts with label birthday. Show all posts
Sunday, August 28, 2011
Friday, July 22, 2011
Prognosis
As we near Ellie's second birthday, all of those same questions keep coming up about her future, as well as some new ones. Since I have been asked them so many times, I can only guess there are others who are thinking them as well, so here are the answers.
Will she out grow it? (or any variation there of: won't she out grow it, when will she out grow it, do they think she will out grow it, is this something she will out grow, etc. etc.)
No. She will not out grow it. The term 'out grow it' is a non-medical and non-scientific term for a condition that suddenly disappears or changes into something else without explanation (and a personal pet peeve of mine). I, personally, wish I could take my honorary medical degree and re-write every poorly written article on FPIES or variations of protein intolerance that are now bouncing around the internet, as well as medical research articles that mislead with their wording. YES, there are situations where children are 'suddenly' able to eat and their protein intolerance appears to have gone away. This is documented in the small amount of research studies that have been conducted. But there are so many variables and each child is very unique in their specific intolerances/allergies, history, and environment. The reasons that the symptoms disappear have to do with intestinal healing and individual immune system response which is very complicated. There are also NO follow up studies (that I have found) on FPIES children who become adults after they 'outgrow' their symptoms. So NO, she will not outgrow it. YES, there is a possibility that at some point her visible symptoms will disappear without medical explanation, but we really have no idea if, when, or what that will mean.
If what you are really asking is 'can she be healed?' then my answer would be a most resounding YES. At no point did we stop believing that the God who made her could choose to heal her instantly. He has not chosen to do that thus far, but we do not give up hope or stop praying for it.
Will she have this forever?
No! (hooray) What Ellie needs is healing, and healing takes time (which is the hardest on this mama). The foods we have her on are part of an intestinal healing program that has been proven for almost a century (did you know Celiac dates back to ancient times?). We have no idea what she will be able to eat as she heals, and only time will tell. Science does say that the more severe foods will probably remain (corn). But only time will tell.
Why are you changing the whole family?
We will never go back to eating and shopping the way we did before FPIES. There are many things about FPIES that has made us better, and I certainly hope we never forget them. We also will never put FPIES completely behind us. It is our life, and the teacher in me has just found a new direction and a new passion. I have a child who started out with simple baby vomit, and who progressed to a state of starvation 18 months later when doctors were stumped. We have found a path towards healing, paved with discovery that could apply to anyone. How could I ever turn my back on that?
Will she out grow it? (or any variation there of: won't she out grow it, when will she out grow it, do they think she will out grow it, is this something she will out grow, etc. etc.)
No. She will not out grow it. The term 'out grow it' is a non-medical and non-scientific term for a condition that suddenly disappears or changes into something else without explanation (and a personal pet peeve of mine). I, personally, wish I could take my honorary medical degree and re-write every poorly written article on FPIES or variations of protein intolerance that are now bouncing around the internet, as well as medical research articles that mislead with their wording. YES, there are situations where children are 'suddenly' able to eat and their protein intolerance appears to have gone away. This is documented in the small amount of research studies that have been conducted. But there are so many variables and each child is very unique in their specific intolerances/allergies, history, and environment. The reasons that the symptoms disappear have to do with intestinal healing and individual immune system response which is very complicated. There are also NO follow up studies (that I have found) on FPIES children who become adults after they 'outgrow' their symptoms. So NO, she will not outgrow it. YES, there is a possibility that at some point her visible symptoms will disappear without medical explanation, but we really have no idea if, when, or what that will mean.
If what you are really asking is 'can she be healed?' then my answer would be a most resounding YES. At no point did we stop believing that the God who made her could choose to heal her instantly. He has not chosen to do that thus far, but we do not give up hope or stop praying for it.
Will she have this forever?
No! (hooray) What Ellie needs is healing, and healing takes time (which is the hardest on this mama). The foods we have her on are part of an intestinal healing program that has been proven for almost a century (did you know Celiac dates back to ancient times?). We have no idea what she will be able to eat as she heals, and only time will tell. Science does say that the more severe foods will probably remain (corn). But only time will tell.
Why are you changing the whole family?
For two reasons:
First, as we have ventured down the path of healing for Ellie, we have learned some things about nutrition and overall health that it would be silly not to just implement for the whole family. It has also shown a path to healing and hope for the rest of us. After all, we see obvious proof in how it is healing Ellie!
Second, it is easier for Ellie. If we can all sit down at the table and have the same meal, she feels included and learns proper social cues, behaviors, and how to relate to food. It removes the millions of 'no that will hurt your tummy' comments, and it creates a safe environment.
Doesn't eating this way cost you a million dollars?
Without launching into a lecture on the 'cost' of parenting and health and the choices we make, I assume people are asking about our actual paycheck and monthly budget. Yes, it did cost a lot at the beginning. Yes, it still costs more than we were spending on food. Yes, there are ways to cut costs and budget. In fact, we eat out a lot less (ok we don't eat out at all) so if we take those couple hundred dollars that we were pretending we weren't spending, and shift them over the food budget, it makes the cost difference not look nearly as severe. If you are truly interested in how to make it more budget efficient, I will be including tips, tricks and suggestions on my new website, so make sure you bookmark The Real Food Place.
What about after she is better/no longer reacts/is no longer severe?First, as we have ventured down the path of healing for Ellie, we have learned some things about nutrition and overall health that it would be silly not to just implement for the whole family. It has also shown a path to healing and hope for the rest of us. After all, we see obvious proof in how it is healing Ellie!
Second, it is easier for Ellie. If we can all sit down at the table and have the same meal, she feels included and learns proper social cues, behaviors, and how to relate to food. It removes the millions of 'no that will hurt your tummy' comments, and it creates a safe environment.
Doesn't eating this way cost you a million dollars?
Without launching into a lecture on the 'cost' of parenting and health and the choices we make, I assume people are asking about our actual paycheck and monthly budget. Yes, it did cost a lot at the beginning. Yes, it still costs more than we were spending on food. Yes, there are ways to cut costs and budget. In fact, we eat out a lot less (ok we don't eat out at all) so if we take those couple hundred dollars that we were pretending we weren't spending, and shift them over the food budget, it makes the cost difference not look nearly as severe. If you are truly interested in how to make it more budget efficient, I will be including tips, tricks and suggestions on my new website, so make sure you bookmark The Real Food Place.
We will never go back to eating and shopping the way we did before FPIES. There are many things about FPIES that has made us better, and I certainly hope we never forget them. We also will never put FPIES completely behind us. It is our life, and the teacher in me has just found a new direction and a new passion. I have a child who started out with simple baby vomit, and who progressed to a state of starvation 18 months later when doctors were stumped. We have found a path towards healing, paved with discovery that could apply to anyone. How could I ever turn my back on that?
Sunday, October 24, 2010
An FPIES Birthday Party
Planning an FPIES birthday party can be sad and frustrating. Ours turned out great, and was a ton of fun! Perhaps we can inspire other families to embrace, and not just grin and bear it! Here is what we did.
Theme: Fruit! I handmade invitations with the help of the nearby scrapbooking store. Using fruit stickers, paper with little recipe cards, and matching papers, I wrote the following:
Handpicked by heaven for our family tree,
The sweetest fruit of summer there ever could be,
With a smile so bright it could never fade,
She's the finest little produce that God ever made!
Inside I wrote: Please join us friends and family for a bumper crop of fun, as we celebrate the special day Elianna Joy turns 1!
Decorations included summer colors of balloons, streamers, table covers (red, yellow, green...) and plastic play fruit scattered about. We put up her birthday picture in a frame, next to a decorative keepsake plate we bought with a picture of a cake on it.
Food included a chocolate fountain and a spread of things to dunk. Mostly fruit of course, but a few odd things like pretzels. And fruit punch of course. It was a major hit!
We then had three games: Bobbing for apples, finding the blueberries in the whipped cream pie with your hands behind your back, and a lemon eating contest. The prizes were Santa Cruz organic lemonades for the kids to take home.
We diced up tiny super ripe peaches and put a candle on top so that we could sing happy birthday and have a photo op. That part didnt go as great. Oh well! And then we passed out ice cream cups instead of cake.
Overall it was SO much fun. And I am so glad we embraced it!
Theme: Fruit! I handmade invitations with the help of the nearby scrapbooking store. Using fruit stickers, paper with little recipe cards, and matching papers, I wrote the following:
Handpicked by heaven for our family tree,
The sweetest fruit of summer there ever could be,
With a smile so bright it could never fade,
She's the finest little produce that God ever made!
Inside I wrote: Please join us friends and family for a bumper crop of fun, as we celebrate the special day Elianna Joy turns 1!
Decorations included summer colors of balloons, streamers, table covers (red, yellow, green...) and plastic play fruit scattered about. We put up her birthday picture in a frame, next to a decorative keepsake plate we bought with a picture of a cake on it.
Food included a chocolate fountain and a spread of things to dunk. Mostly fruit of course, but a few odd things like pretzels. And fruit punch of course. It was a major hit!
We then had three games: Bobbing for apples, finding the blueberries in the whipped cream pie with your hands behind your back, and a lemon eating contest. The prizes were Santa Cruz organic lemonades for the kids to take home.
We diced up tiny super ripe peaches and put a candle on top so that we could sing happy birthday and have a photo op. That part didnt go as great. Oh well! And then we passed out ice cream cups instead of cake.
Overall it was SO much fun. And I am so glad we embraced it!
Wednesday, October 20, 2010
Moving Forward
At this point we were giving Ellie peaches, nectarines and blueberries, but we had not correctly trialled them. She no longer received a spoon and would only eat things that she could feed herself. This drastically limits options at 12 months old when there are texture issues. She would not touch anything, and she was also teething (seriously inconvenient when dealing with FPIES).
We had been feeling financial strain from co-pays, formula expense, time off of work, and medical bills. Deep down I knew I needed to put her on the more expensive Elemental formula to see if there was improvement, but her intake was increasing and we were talking an average of $45-$60 a can. Something was going to have to change. We were at the cross-roads, and I was not convinced we could do it financially. I expressed my thoughts to my new mom-friends online. I was looking for any insight to get the insurance company to cover Ellie's formula, and thoughts on moving to the prescription medical grade formula. One of the mom's offered to send me 7 cans of the Elemental formula Nutramigen AA. For the full amazing story click 'here'.
For an explanation of the different formulas click 'here'.
In the meantime I took Ellie to her next GI appointment on the morning of her first birthday. He has amazing patience and fantastic listening ear. We recapped her symptoms and discussed the new ones:
-reflux since birth, even in hospital had to be addressed by nurses
-fussy and seen for colic
-snotty clogged nose since birth
-upper respiratory issues
-can not hold her facing out with arm pressure on her belly or she will vomit
-never had a completely solid stool - always diarrhea and liquid
-always had sensory focused personality - sensitive to touch, likes soft, etc. hates dirty diapers, wont eat if diaper is wet, etc
-change from breastfeeding to formula meant more alert happy baby but no change in stools
-history of crying and pain
recent changes:
-straining at time to poo even if diarrhea. acts in pain, constipation.
-stool smells acidic and burns her butt sometimes
-vomit has changed to be partially curdy
-stool often has two separate ‘stages’, a liquid stage first, and then a goopy solid portion 15+ minutes later
-horrible breath
-lots of hands in the mouth for sucking and putting things back until she gags
-no solids - periodic peach juice or smashed blueberry - yet stool stays same diarrhea
-spends the night fussy and up often after having any food
-often still just randomly chokes up stomach acid, but less projectile vomit
Our pediatric GI agreed it was time to look further. The radiologist had concern for colitis in her upper intestines, but the GI was not overly concerned. He said there would be more visible evidence in her stool (bleeding). It was time to take an internal look. He conducted a rectal scope and biopsy (happy birthday Ellie). The rectal scope looked great. Everything seemed to be in her upper intestines. He gave orders for stool sample tests and said to work on collecting them while waiting for the results of the biopsy. He recapped FPIES versus EE, and the idea that her specific problems could be in her esophagus. He mentioned a concern for sugar intolerance which he said was a secondary issue to FPIES, and why she could still be having trouble with the fruits. When I asked about Nutramigen AA (the formula being sent by the other FPIES mom) he said it was not one that he kept in the office, and the he would prefer she be on one that was designed more for a toddler nutritionally.
We left the appointment with instructions to try the elemental formula, samples of Elecare, a new reflux medicine, three large bags of stool sample kits, and instructions to wait for results of these additional tests. I took a deep breath, lots of notes, and made final preparations for Ellie's first birthday party in two days.
We had been feeling financial strain from co-pays, formula expense, time off of work, and medical bills. Deep down I knew I needed to put her on the more expensive Elemental formula to see if there was improvement, but her intake was increasing and we were talking an average of $45-$60 a can. Something was going to have to change. We were at the cross-roads, and I was not convinced we could do it financially. I expressed my thoughts to my new mom-friends online. I was looking for any insight to get the insurance company to cover Ellie's formula, and thoughts on moving to the prescription medical grade formula. One of the mom's offered to send me 7 cans of the Elemental formula Nutramigen AA. For the full amazing story click 'here'.
For an explanation of the different formulas click 'here'.
In the meantime I took Ellie to her next GI appointment on the morning of her first birthday. He has amazing patience and fantastic listening ear. We recapped her symptoms and discussed the new ones:
-reflux since birth, even in hospital had to be addressed by nurses
-fussy and seen for colic
-snotty clogged nose since birth
-upper respiratory issues
-can not hold her facing out with arm pressure on her belly or she will vomit
-never had a completely solid stool - always diarrhea and liquid
-always had sensory focused personality - sensitive to touch, likes soft, etc. hates dirty diapers, wont eat if diaper is wet, etc
-change from breastfeeding to formula meant more alert happy baby but no change in stools
-history of crying and pain
recent changes:
-straining at time to poo even if diarrhea. acts in pain, constipation.
-stool smells acidic and burns her butt sometimes
-vomit has changed to be partially curdy
-stool often has two separate ‘stages’, a liquid stage first, and then a goopy solid portion 15+ minutes later
-horrible breath
-lots of hands in the mouth for sucking and putting things back until she gags
-no solids - periodic peach juice or smashed blueberry - yet stool stays same diarrhea
-spends the night fussy and up often after having any food
-often still just randomly chokes up stomach acid, but less projectile vomit
Our pediatric GI agreed it was time to look further. The radiologist had concern for colitis in her upper intestines, but the GI was not overly concerned. He said there would be more visible evidence in her stool (bleeding). It was time to take an internal look. He conducted a rectal scope and biopsy (happy birthday Ellie). The rectal scope looked great. Everything seemed to be in her upper intestines. He gave orders for stool sample tests and said to work on collecting them while waiting for the results of the biopsy. He recapped FPIES versus EE, and the idea that her specific problems could be in her esophagus. He mentioned a concern for sugar intolerance which he said was a secondary issue to FPIES, and why she could still be having trouble with the fruits. When I asked about Nutramigen AA (the formula being sent by the other FPIES mom) he said it was not one that he kept in the office, and the he would prefer she be on one that was designed more for a toddler nutritionally.
We left the appointment with instructions to try the elemental formula, samples of Elecare, a new reflux medicine, three large bags of stool sample kits, and instructions to wait for results of these additional tests. I took a deep breath, lots of notes, and made final preparations for Ellie's first birthday party in two days.
Hello FPIES, Goodbye Life As We Knew It
And so came and went the last week of July 2010. I spent this week moving between the stages of helplessness, frustration, and anger. I was grieving. After a couple of days reflecting on the appointment with the allergist, I was determined that my new life of advocating had begun and it was time to hit the internet for resources. I spent hours upon hours, late at night researching FPIES in hopes of determining if it was indeed the appropriate diagnosis and trying to understand what it meant. How in the world could an infant not eat protein? What exactly is food protein? The questions were limitless (and still are).
A great friend suggested I try facebook and Baby Center for resources, and I hit the jackpot. Who would have guessed? Not I! What I found were other moms desperate for answers. Some were worse than Elianna, terribly worse. The information was overwhelming and came rolling in by the encyclopedia full. These moms knew way more than the doctors. The reality of the diagnosis was setting in, as well as what it meant. I looked back at the last year and realized I had never really stopped to let it soak in. We have a special needs child. And the next week was her first birthday.
In the middle of all this I was planning a birthday party, which I soon discovered to be FPIES style and very common. No cake. No ice cream. No treats. No way to blow out a candle and no cute pictures of smashing the icing. I decided, most reluctantly, to embrace our new situation, and a 'fruit theme' it became. I poured over invitations, decorations, and gift ideas in an effort to make it a special day for her in spite of her condition. And I cried. No cake. No ice cream. No candle. I cried again.
I think this is probably a major transitional time for most FPIES families. It is when the reality hits if it hasn't already. For some reason the pediatric community sees 12 months old as being some magical age where 'real' food can be introduced and breastfeeding or formula no longer becomes as critical. Children are expected to begin eating, sitting at the table, and joining in. And they know. They want it, they reach for it, and they can't have it. This was affirmed by my visit to the allergist.
I neared the end of this reflective week. I had spent hours on my knees praying, as well as on the internet researching and making connections. My conclusion: FPIES it is, and not knowing was not acceptable. I made a return appointment for the GI where I knew someone was on my side. And I pleaded for help from a small handful of women I now 'knew' from the internet. I started a written medical journal for Ellie, going back through the last year and documented what I could. I wrote a summary of symptoms and changes, and then wrote a list of recent changes and current symptoms. What became clear is that she was not well. We had seen improvement with the change to Nutramigen Lipil, but we had not seen what I now know is called 'baseline'. She refused food because it meant pain, and we could not move forward. I had to make a plan because I could not sit and wait for the allergist who had never called. Life as we knew it must change whether we liked it or not - and I guarantee, none of us liked it. Now if we could just figure out how to move forward.
A great friend suggested I try facebook and Baby Center for resources, and I hit the jackpot. Who would have guessed? Not I! What I found were other moms desperate for answers. Some were worse than Elianna, terribly worse. The information was overwhelming and came rolling in by the encyclopedia full. These moms knew way more than the doctors. The reality of the diagnosis was setting in, as well as what it meant. I looked back at the last year and realized I had never really stopped to let it soak in. We have a special needs child. And the next week was her first birthday.
In the middle of all this I was planning a birthday party, which I soon discovered to be FPIES style and very common. No cake. No ice cream. No treats. No way to blow out a candle and no cute pictures of smashing the icing. I decided, most reluctantly, to embrace our new situation, and a 'fruit theme' it became. I poured over invitations, decorations, and gift ideas in an effort to make it a special day for her in spite of her condition. And I cried. No cake. No ice cream. No candle. I cried again.
I think this is probably a major transitional time for most FPIES families. It is when the reality hits if it hasn't already. For some reason the pediatric community sees 12 months old as being some magical age where 'real' food can be introduced and breastfeeding or formula no longer becomes as critical. Children are expected to begin eating, sitting at the table, and joining in. And they know. They want it, they reach for it, and they can't have it. This was affirmed by my visit to the allergist.
I neared the end of this reflective week. I had spent hours on my knees praying, as well as on the internet researching and making connections. My conclusion: FPIES it is, and not knowing was not acceptable. I made a return appointment for the GI where I knew someone was on my side. And I pleaded for help from a small handful of women I now 'knew' from the internet. I started a written medical journal for Ellie, going back through the last year and documented what I could. I wrote a summary of symptoms and changes, and then wrote a list of recent changes and current symptoms. What became clear is that she was not well. We had seen improvement with the change to Nutramigen Lipil, but we had not seen what I now know is called 'baseline'. She refused food because it meant pain, and we could not move forward. I had to make a plan because I could not sit and wait for the allergist who had never called. Life as we knew it must change whether we liked it or not - and I guarantee, none of us liked it. Now if we could just figure out how to move forward.
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