One year ago, the last week in Feb., we took away all food from Little Man. He was 8mo.old. I also stopped nursing him and we changed him over to an Elemental formula - Elecare, as he was continuing to react to my milk despite going dairy/soy and then also wheat free. Unfortunately I had no idea of a very real possibility of a corn allergy. I did not know that his intolerance's of medications could indicate a corn trigger, or that when I gave up wheat and introduced more corn-was the reason he got worse instead of better on the elimination diet while breastfeeding him. I was even feeding him some corn products! But we were so lost then.
Are we less lost now? Yes, and no. We've learned so much over the past year. If I had known then what I know now, we could have really saved Little Man some pain....but that wasn't God's plan. We have to keep remembering we are mere servants to God's plan. My Faith is the only thing bringing me through some days. Days I've had recently where I am emotionally and physically drained. Going at this moment by moment. We're going as fast as we can....no where.
Every food we try, he reacts to- usually by day 3. Sometimes there are early signs that it may not be going well but not enough to stop the trial....slow it down, keep it steady- yes but not stop. And then it's as if the floor falls out from underneath and the symptoms build.
What is going on? Yeast? Bacteria? Leaky gut? Over-reactive Immune response? Held off food for too long and now he's over-sensitized? All of the above? What are we missing?
I feel as if I am standing over a 5,000 piece puzzle....I have so many of the pieces in place but I'm still standing here with a few- and I can't find where they go. The puzle looks complete, but did I put one in the wrong place? Do I need to look at it up-side-down? Turning, turning, turning those pieces to see where they match up. It just feels like I'm so close....so many, many hours of research and sleepless nights trying to wrap my brain around what is in the research and how it matches to not only my Little Man but to so many others who share similar experiences.
I am optimistic that Dr.Jyonouchi at The Pediatric Center for Rare and Complex Diseases, and author of Non IgE Mediated Food Allergy can help me with these last puzzle pieces. I don't expect her to solve the puzzle- just help me to see how I can put the pieces in to fit so we can move forward once again.
Showing posts with label Pediatric Center for Rare and Complex Diseases. Show all posts
Showing posts with label Pediatric Center for Rare and Complex Diseases. Show all posts
Thursday, February 10, 2011
Wednesday, February 9, 2011
Showers of Blessings with a sprinkling of Humility...
I would have thought of myself as already having humility. But it is one of the lessons I believe God has given me on this journey....a lesson to learn and grow more, to learn of His handwriting all over our lives...accepting the showering of blessings from angels here on earth.
Angels disguised as friends who offer to watch Little Man’s brothers for the day, after a particularly hard night of pain and sleeplessness (pre-FPIES diagnosis), a night that had been happening with increased frequency, followed by days that were more of the same. Swallow your pride, accept the help. It was hard to accept the generous offer but I put myself aside and thought of my boys and how much it would mean to them, and I accepted the offer. I began my lessons in humility.
It continued when my sister moved in, to help, and when friends generously gave us their RV for us to take to Philadelphia so we could get Little Man to an appointment with an Allergist for a diagnosis, and a direction. Our blessings continue to flow… so many blessings- I will devote another post to, at a later date. Please know, if you are reading this and you have helped me in any way...it never goes unnoticed (by us or Him).
The blessings others have bestowed on us have been inspiring. The kindness of not only friends and family, but complete strangers.
But strangers we are not.
Common bonds we share.
FPIES families…..
A few weeks ago, I read a post on a support board from a mom who had taken her daughters to a clinic in New Jersey, The.Pediatric Center for Rare and complex diseases. She reported good success with this Dr. at the clinic in helping guide her through her daughters FPIES and food trials. Another mom saw this post as well and called to check on it herself. She then shared this information in her blog post. They had an appointment for their son lined up. I read it. I began to wonder if it would be something we should do for our Little Man. I was familiar with the research MD, as she wrote this article on Non-IgE food allergy that grabbed my attention a few months ago. I have been dissecting through it and processing through all the information it provides, connecting the dots to what other moms report and what we experience to what all this means- Non-IgE food allergy, Protein Intolerance's, FPIES. SOO much information in one paper, now a chance to MEET this doctor? To have her consult on Little Man? Could it be real?
Another FPIES mom spoke to their son’s doctors about this research MD. They made an appointment for that very week for their son. She shared the information she learned as well and that it might be something for others to look into. We also began to discuss the possibility, the probability of a trip out east again. More information was obtained about the research and the MD and the study’s components and it looks promising, very promising.
Now to get an appointment, an appointment with this very knowledgeable research MD that would also involve being a part of a study she is doing. We make calls and send e-mails with the intentions of our interest for Little Man to obtain an appointment. Other families call as well, other families looking for direction, looking for help on this journey. We get word that they are interested in Little Man but we are unable to reach the scheduler….the spots are filling up fast and it looks like it may be March or even April before we go.
And then an message comes from a fellow FPIES family. A family we’ve never met. A family we share common bonds with- not only a child with FPIES but a family of 4 children (all similar ages). A family that struggles with the everyday weight and strains of this chronic illness just as we do, that needs this appointment for direction just as much…“Will you take our appointment slot?” is her e-mail message. Not because they don’t want to go, or because their little man doesn’t need it. But because there is a connection among the families…..and offer so generous…of course, I can’t imagine accepting such an offer; and we continue to try and get a hold of the scheduler in New Jersey. We get a hold of the scheduler/coordinator with confirmation that they are interested in Little Man but we get disconnected before the appointment can be made. Another message from this family….”can you make a 10am appointment on Feb.17?” is her message; before I could even reply again she has already made the call to the scheduler and requested that our appointments are swapped. A family we've never met, kindness from strangers, blessings from angels.
There simply are no words. No words that I can find to even begin to express my gratitude for this extreme act of kindness, act of thoughtfulness. This family follows our story, and knows our struggles- they share many of those struggles as well, as many other families do. They have sensed my urgency for help as my son is not gaining weight, not tolerating foods, and not moving ahead. They also follow our story enough to know that I am trying to help. Finding answers for my son is my driving force but my passion is in helping others – helping others find their answers, find their baseline. The more I help, the more I learn and the more I learn, the more I share, the more I share, the more I help. We can connect all the dots, we can find answers, we can help one another. We can help our children. We can help future children. We can make a difference.
We are not alone and I am humbled.
Showers of blessings…and my blessings and heartfelt thanks go to the family.
We see Dr.J next Thursday. Stay tuned!!
Angels disguised as friends who offer to watch Little Man’s brothers for the day, after a particularly hard night of pain and sleeplessness (pre-FPIES diagnosis), a night that had been happening with increased frequency, followed by days that were more of the same. Swallow your pride, accept the help. It was hard to accept the generous offer but I put myself aside and thought of my boys and how much it would mean to them, and I accepted the offer. I began my lessons in humility.
It continued when my sister moved in, to help, and when friends generously gave us their RV for us to take to Philadelphia so we could get Little Man to an appointment with an Allergist for a diagnosis, and a direction. Our blessings continue to flow… so many blessings- I will devote another post to, at a later date. Please know, if you are reading this and you have helped me in any way...it never goes unnoticed (by us or Him).
The blessings others have bestowed on us have been inspiring. The kindness of not only friends and family, but complete strangers.
But strangers we are not.
Common bonds we share.
FPIES families…..
A few weeks ago, I read a post on a support board from a mom who had taken her daughters to a clinic in New Jersey, The.Pediatric Center for Rare and complex diseases. She reported good success with this Dr. at the clinic in helping guide her through her daughters FPIES and food trials. Another mom saw this post as well and called to check on it herself. She then shared this information in her blog post. They had an appointment for their son lined up. I read it. I began to wonder if it would be something we should do for our Little Man. I was familiar with the research MD, as she wrote this article on Non-IgE food allergy that grabbed my attention a few months ago. I have been dissecting through it and processing through all the information it provides, connecting the dots to what other moms report and what we experience to what all this means- Non-IgE food allergy, Protein Intolerance's, FPIES. SOO much information in one paper, now a chance to MEET this doctor? To have her consult on Little Man? Could it be real?
Another FPIES mom spoke to their son’s doctors about this research MD. They made an appointment for that very week for their son. She shared the information she learned as well and that it might be something for others to look into. We also began to discuss the possibility, the probability of a trip out east again. More information was obtained about the research and the MD and the study’s components and it looks promising, very promising.
Now to get an appointment, an appointment with this very knowledgeable research MD that would also involve being a part of a study she is doing. We make calls and send e-mails with the intentions of our interest for Little Man to obtain an appointment. Other families call as well, other families looking for direction, looking for help on this journey. We get word that they are interested in Little Man but we are unable to reach the scheduler….the spots are filling up fast and it looks like it may be March or even April before we go.
And then an message comes from a fellow FPIES family. A family we’ve never met. A family we share common bonds with- not only a child with FPIES but a family of 4 children (all similar ages). A family that struggles with the everyday weight and strains of this chronic illness just as we do, that needs this appointment for direction just as much…“Will you take our appointment slot?” is her e-mail message. Not because they don’t want to go, or because their little man doesn’t need it. But because there is a connection among the families…..and offer so generous…of course, I can’t imagine accepting such an offer; and we continue to try and get a hold of the scheduler in New Jersey. We get a hold of the scheduler/coordinator with confirmation that they are interested in Little Man but we get disconnected before the appointment can be made. Another message from this family….”can you make a 10am appointment on Feb.17?” is her message; before I could even reply again she has already made the call to the scheduler and requested that our appointments are swapped. A family we've never met, kindness from strangers, blessings from angels.
There simply are no words. No words that I can find to even begin to express my gratitude for this extreme act of kindness, act of thoughtfulness. This family follows our story, and knows our struggles- they share many of those struggles as well, as many other families do. They have sensed my urgency for help as my son is not gaining weight, not tolerating foods, and not moving ahead. They also follow our story enough to know that I am trying to help. Finding answers for my son is my driving force but my passion is in helping others – helping others find their answers, find their baseline. The more I help, the more I learn and the more I learn, the more I share, the more I share, the more I help. We can connect all the dots, we can find answers, we can help one another. We can help our children. We can help future children. We can make a difference.
We are not alone and I am humbled.
Showers of blessings…and my blessings and heartfelt thanks go to the family.
We see Dr.J next Thursday. Stay tuned!!
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