Today is a bit calmer for me. The last couple of days have been rough as I have tried to soak in Elianna's new diagnosis and what it means. One of the things we can always count on about science is that it will continually morph and change as we learn new things, or at least, think we do. Since this is a new syndrome I am so happy that we live in the perfect time where I can use this information to help her. I am also overwhelmed with what it means. While it is not a terminal diagnosis, I definitely feel the weight of how it could be if it is not monitored or taken care of properly. I feel as if I have a child that has been diagnosed with...say....diabetes.
Our doctor reassures me that most outgrow this condition so I am trying desperately to not be overly dramatic, but the reality is that even if she does outgrow it, there will be years of trial and error, record keeping, and modification. It exhausts me to think of it!
Thank you so much for your prayers and for those of you who have sent me a note of encouragement. It really has meant a lot to me.
In regards to her diagnosis, here is an explanation about allergies as I understood it explained to me:
There are two 'types' of allergies. One type begins with respiratory symptoms and ends in anaphylactic shock (like my lovely strawberry, shellfish, and watermelon allergies). The other type begins with gastrointestinal symptoms and ends in severe flu-like symptoms and complete intestinal failure. Science only recently discovered the gastrointestinal side of it, and that spectrum is called FPIES. There are blood tests to identify the anaphylactic spectrum, but not the FPIES spectrum, so it is diagnosed based on common traits and symptoms. Over 50% of infants with the dairy and soy protein problem that Elianna has end up with FPIES.
All of us have memory receptors in our blood that remember allergens. These receptors die out approximately every 18 months. When Elianna is old enough to begin testing her allergies to certain things, we will introduce a small amount and see if she reacts. If she does, we have to wait 18 months before reintroducing that food again. Oddly enough, tree nuts will be one of the first things she can have, and we can try transitioning her off of formula and onto almond milk or hemp milk (hemp milk??).
The nutritionist said that this process of introducing foods other than fruits (no bananas) will also be dependent on behavior. Elianna is developing a connection to solids making her hurt and wants only the bottle when she is hungry. In the meantime she could be on formula for her protein needs until she is two.
This is all the information I have so far. And, let me tell you, it is enough! The concept of working full time, homeschooling Moriah, running a home, and making/growing/buying food to accommodate our needs is extremely intimidating. I am exhausted just thinking about it! The one good thing I can see is that it will keep me on my knees!
Wednesday, June 23, 2010
Monday, June 21, 2010
Who Would Have Thought
Today I headed to the Pediatric GI specialist for Elianna's follow up appointment. Last week we received the good news that her blood tests came back negative for Celiac and for a whole gamut of allergies. I entered the office and jokingly told the doctor I was hoping I would show up and he would just tell me she had a rough first four months before her dairy protein diagnosis, and that all she needed was a good round of probiotics and would be good to go. He laughed. And then told me, 'yeah....no. We can fake throwing up but we cant fake diarrhea'. Darn.
We love this office. These doctors are incredibly on the ball and always have the latest information on anything random. Dr. Barad can spout random facts about anything such as 'well, yes, actually, Sub-Sahara Africa has the highest incidence of Celiac's in the world with 1 in every ?? having it'. I don't even remember the number he gave. So today I felt blessed to have such a knowledgeable doctor, but not so happy at the diagnosis.
Who would have thought that I would be told my 10 month old daughter can not have ANY protein. None. This apparently occurs in over 50% of infants diagnosed with her dairy and soy processing disorder. What she has is relatively new and is called FPIES (referred to as F-Pies), and stands for Food Protein Induced Enterocolitis Syndrome.
The bad news first:
No protein for now, and most likely at the earliest will be 18 months of age. The treatment is to get nutrition from an extensively hydrolyzed casein formula, which is what we are already spending between approximately $500 and $700 a month on to feed her. She can be on this formula until she is 2 if she has to be, according to the pediatric nutritionist. She may not have grains, legumes or meat. Did you know that rice has protein? There is also a list of highly allergic foods that the lucky 3% of kids with this diagnosis get to deal with. Top of the list are rice, sweet potatoes, and bananas. Geesh. The top things we are supposed to feed when beginning solids! No wonder we are having problems.
The good news last:
Perhaps with this diagnosis we will be able to get the insurance company to say the formula is actually medically necessary and they will pay for at least a portion of it. Food will be easy since she is on a restricted diet of formula and fruits for the next six weeks. We are to start with apricots, plums, and apples, the three least allergy prone foods for all humans anywhere. (again, who would have thought?). The majority of these kids outgrow this syndrome between 2 and 3 years of age. GREAT NEWS. (however there is a long extensive process for introducing these solids successfully).
What now:
We have a referral in to the allergist. Our GI doctor said he is comfortably the initial diagnosis and saying that she is on the FPIES spectrum, but wants the allergist to examine her and weigh in as well. I have been instructed to purchased fresh, organic fruit that is in season and made food for her. And now I begin the process of trying to learn what kitchen items can retain allergens (anyone know about cast iron pots and pans?).
I think that is all. Though my brain is pretty fried from rethinking and processing. I am so happy we have a diagnosis finally. Whew. I need a glass of wine!
I will follow up later with another post explaining how this is diagnosed and how it falls in the allergy category. Time for dinner.
We love this office. These doctors are incredibly on the ball and always have the latest information on anything random. Dr. Barad can spout random facts about anything such as 'well, yes, actually, Sub-Sahara Africa has the highest incidence of Celiac's in the world with 1 in every ?? having it'. I don't even remember the number he gave. So today I felt blessed to have such a knowledgeable doctor, but not so happy at the diagnosis.
Who would have thought that I would be told my 10 month old daughter can not have ANY protein. None. This apparently occurs in over 50% of infants diagnosed with her dairy and soy processing disorder. What she has is relatively new and is called FPIES (referred to as F-Pies), and stands for Food Protein Induced Enterocolitis Syndrome.
The bad news first:
No protein for now, and most likely at the earliest will be 18 months of age. The treatment is to get nutrition from an extensively hydrolyzed casein formula, which is what we are already spending between approximately $500 and $700 a month on to feed her. She can be on this formula until she is 2 if she has to be, according to the pediatric nutritionist. She may not have grains, legumes or meat. Did you know that rice has protein? There is also a list of highly allergic foods that the lucky 3% of kids with this diagnosis get to deal with. Top of the list are rice, sweet potatoes, and bananas. Geesh. The top things we are supposed to feed when beginning solids! No wonder we are having problems.
The good news last:
Perhaps with this diagnosis we will be able to get the insurance company to say the formula is actually medically necessary and they will pay for at least a portion of it. Food will be easy since she is on a restricted diet of formula and fruits for the next six weeks. We are to start with apricots, plums, and apples, the three least allergy prone foods for all humans anywhere. (again, who would have thought?). The majority of these kids outgrow this syndrome between 2 and 3 years of age. GREAT NEWS. (however there is a long extensive process for introducing these solids successfully).
What now:
We have a referral in to the allergist. Our GI doctor said he is comfortably the initial diagnosis and saying that she is on the FPIES spectrum, but wants the allergist to examine her and weigh in as well. I have been instructed to purchased fresh, organic fruit that is in season and made food for her. And now I begin the process of trying to learn what kitchen items can retain allergens (anyone know about cast iron pots and pans?).
I think that is all. Though my brain is pretty fried from rethinking and processing. I am so happy we have a diagnosis finally. Whew. I need a glass of wine!
I will follow up later with another post explaining how this is diagnosed and how it falls in the allergy category. Time for dinner.
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