Almost two months ago I made the decision that 'no answers' and 'try this' were no longer acceptable answers for my Ellie. 'She will outgrow it.....we think.....at some point....' was beyond frustrating, when coupled with an allergist who saw through my eyes when her patch testing showed an intolerance to corn. 'WHERE IS SHE GETTING CORN?' he firmly had asked in a very demanding tone. Where? Her formula. 'We need to get her off.' Yes, I know. But how exactly?
Doctors are not trained in nutrition. In fact, it is so much NOT apart of their medical school that there is a separate degree for it, and they then refer you to a nutritionist. This is not something I am bitter about. The rise in information and advances in western medicine have created a situation where no doctor could know everything, and specialists have evolved in an effort to deal with exactly this. The new problem is body parts are connected and affect each other. The heart does not exist separately from the brain that tells it to pump, and the intestines do not exist separately from the blood that uses its nutrients.
So now what? There was not a doctor that could counsel me on creating a home made formula for Ellie. And our team of doctors all panicked for Ellie, using what information they had. This makes me appreciate them all, but did not give us answers.
Allergist: Get her off the formula. Put her on home made almond milk and see the head nutritionist at the hospital. She should be ok for a couple weeks like this and at this point needs to be off bad enough that we need to risk lack of nutrients and weight loss. (I am supposed to be ok with starving my child for a couple of weeks?)
Pediatric Gastrointerologist: Speak to our in-house nutritionist about what foods to trial and getting her off the formula, and keep the formula because at this time she is growing and appearing to 'thrive' where she is at. (I am supposed to be ok with ignoring the other symptoms I am seeing and the fact that she is steadily getting sicker?)
Pediatric Nutritionist in GI office: Transition her off of the formula and give her homemade almond milk. Try hemp milk and lamb and a vitamin and she should be fine. (I am supposed to be ok with taking at least four weeks to get her onto any kind of food, assuming she passes them all and we are not set back a couple of weeks with a fail?)
Pediatrician: Just looked at me in what appeared to be wide-eyed frustration as I told him about what the other doctors had said. He nodded his head as he listened to my concerns, and what I thought I was going to have to do. He said the equivalent of 'you do what you have to do for your child' and 'what I can do is give you an additional referral to the head nutritionist for help'.
Where did this leave us? Getting a referral to Stanford would take weeks, and getting in to Dr. J in New Jersey could take months. We didn't have this amount of time to wait with not even a guarantee of an answer.
What I did:
It was day seven of feeding Elianna only home made almond milk. She threw up every third or fourth bottle, was white in color, had sunken eyes, and barely walked. Her weight was dropping fast, and her eyes got cloudier and cloudier. I was told to persevere. That night, while on my knees crying for my child who I felt was dying before my eyes, I realized the answer had been right in front of me all along. For two years the information kept popping up from various angles.
And at that moment I resolved that things would be different. What did I have to lose? Nothing. It certainly couldn't get much worse. She was starving before my eyes.
I got up, made her a bottle of formula to buy us time, and risked the reactions she would have on it. Reintroducing the formula after her body had the time to rid itself of it meant her blood would react harder and faster when it was reintroduced. But it was better than no food and would buy us some time.
And I emailed Dr. Natasha Campbell-McBride. In the morning I would revisit my GAPS and SCD books.
Showing posts with label allergist. Show all posts
Showing posts with label allergist. Show all posts
Thursday, March 17, 2011
Sunday, February 6, 2011
Fearful Mommy: part 2
We began transitioning Ellie onto the home made almond milk. The allergist wanted me to transition over the period of a month, while the nutritionist wanted me to start introducing new foods right away, and those two things did not match. I decided that if the corn formula was not good for her, we needed to transition faster than a month. Her nutrition depended on it, so within 4 days we had her on 100% almond milk. It was not going well. Her intake was down dramatically, and about every 3rd or 4th bottle she was vomiting. I think that if I was on 100% almond milk, I would vomit, too.
By Wednesday of that week I began to be seriously concerned for dehydration. I couldn't tell if her clumsiness and lethargic behavior was due to reaction, die off, or just plain lack of food. It was also the first day we had to take her out of the house. We had plans to take Moriah to the SF Academy of Sciences homeschool day, and she was looking forward to it tremendously. We packed up two thermoses of hot almond milk, and headed out, just like we would do for formula.
The day went OK, though her intake was low as usual. Her daily 50-60 ounces was down to about 25, and this day was no different. Late that afternoon we headed home, and she was hungry. She quickly downed a bottle in the car, and then suddenly as we entered the foothills during rush hour traffic, she began vomiting. She projectile vomited so hard that she was having trouble breathing, and she wasn't stopping. Jason crossed four lanes of traffic to stop on the shoulder, and I barely had enough room to open the door. I jumped out, grabbed her out of her seat, and held her upside down, up the hill we were next to, as she continued to heave. This was scary enough that for the first time her 5 year old sister verbalized 'Mommy I am sad for Ellie too!'.
What in the world? I was puzzled. We cleaned up as best we could and piled back in for the remainder of the ride home. I grabbed the thermos and smelled. It was rancid. Stupid, stupid mommy! It never even occurred to me that the almond milk would store differently and needed to be refrigerated and not hot. And in my head I knew - she was so used to eating things that hurt her tummy or that tasted nasty, she just ate it. The whole bottle. 8 ounces of rancid almond milk.
By the time we got home, got cleaned up, and got the kids into bed, I was exhausted. I found myself on my knees in the bedroom once more, looking for wisdom and direction. And the mommy guilt was horrific.
We had just finished day four of only almond milk. Her body was thinning, and her skin was changing. She was groggy, clumsy and lethargic, but her eyes were brighter and less dull. The results were confusing, and no doctor could give me direction. I had to rely on my mommy instincts, what information I had been able to piece together, and pray for direction from the God who made her. At this point what I knew was that the almond milk was perhaps better than the formula, but not enough to sustain her. And I was convinced some of what I was seeing was a 'die off' effect in her intestines, making her sicker.
I made the decision to try hemp next. Following GAPs guidelines, I made a paste of the hemp protein powder I had purchased, and applied it to her wrist while she slept. I covered it with a bandaid, and went to bed.
By Wednesday of that week I began to be seriously concerned for dehydration. I couldn't tell if her clumsiness and lethargic behavior was due to reaction, die off, or just plain lack of food. It was also the first day we had to take her out of the house. We had plans to take Moriah to the SF Academy of Sciences homeschool day, and she was looking forward to it tremendously. We packed up two thermoses of hot almond milk, and headed out, just like we would do for formula.
The day went OK, though her intake was low as usual. Her daily 50-60 ounces was down to about 25, and this day was no different. Late that afternoon we headed home, and she was hungry. She quickly downed a bottle in the car, and then suddenly as we entered the foothills during rush hour traffic, she began vomiting. She projectile vomited so hard that she was having trouble breathing, and she wasn't stopping. Jason crossed four lanes of traffic to stop on the shoulder, and I barely had enough room to open the door. I jumped out, grabbed her out of her seat, and held her upside down, up the hill we were next to, as she continued to heave. This was scary enough that for the first time her 5 year old sister verbalized 'Mommy I am sad for Ellie too!'.
What in the world? I was puzzled. We cleaned up as best we could and piled back in for the remainder of the ride home. I grabbed the thermos and smelled. It was rancid. Stupid, stupid mommy! It never even occurred to me that the almond milk would store differently and needed to be refrigerated and not hot. And in my head I knew - she was so used to eating things that hurt her tummy or that tasted nasty, she just ate it. The whole bottle. 8 ounces of rancid almond milk.
By the time we got home, got cleaned up, and got the kids into bed, I was exhausted. I found myself on my knees in the bedroom once more, looking for wisdom and direction. And the mommy guilt was horrific.
We had just finished day four of only almond milk. Her body was thinning, and her skin was changing. She was groggy, clumsy and lethargic, but her eyes were brighter and less dull. The results were confusing, and no doctor could give me direction. I had to rely on my mommy instincts, what information I had been able to piece together, and pray for direction from the God who made her. At this point what I knew was that the almond milk was perhaps better than the formula, but not enough to sustain her. And I was convinced some of what I was seeing was a 'die off' effect in her intestines, making her sicker.
I made the decision to try hemp next. Following GAPs guidelines, I made a paste of the hemp protein powder I had purchased, and applied it to her wrist while she slept. I covered it with a bandaid, and went to bed.
Wednesday, October 20, 2010
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.
Meeting the Allergist
My feeling of urgency was not reciprocated by the allergist referral process. It took several weeks to actually get an appointment and get in to see the allergist we were referred to. I was extremely nervous, and had no idea that this would begin my journey of researching and advocating. About one month later we headed to our appointment with the allergist, and it did not go as I had hoped.
It was a very difficult appointment. We waited an extensive amount of time in the waiting room, and then even longer in the patient room. When the doctor finally came in he barely stood still while talking and then exited the room in a hurry. He definitely hit one of my pet peeves - giving the impression that I had to talk fast enough to get it all in before he was gone or had decided not to listen anymore. He stood and read Ellie's file while in the room with us and asked questions about the GI's notes which(incorrectly)said that banana and rice were ok. He said this didn't make sense and he needed to talk to the G.I. and declared that we were going to do prick testing.
I at least saw this coming, because I have a history of IgE allergies and some severe food allergies. I have had my share of prick testing.
My response to the allergist was: I am familiar with prick testing as I have many of my own severe IgE allergies. 20 years ago when they drew my blood and sent it to UCD to study I was told they did not know much about food allergies and that prick testing was not helpful. I assume they know more now?
His response to me: Hmm. No. Not really. There is a lot we don't know and not much has changed in the last 20 years. The nurse will be in in a minute.
And out he went. Nurse came in. Prick testing completed and Ellie reacted to NOTHING. Not a single one. (tested for: milk, almond, cod, soy, rye, oats, barley, white potato, chicken, apple and the control)
Back in came the allergist. He wants to do patch testing next to see if we can find any leads. He needs to talk to the G.I. He will communicate with me over email or phone. He recommends we wait until she is a year old before proceeding with anything. He looked at the list from the G.I. and pediatric nutritionist. Do not trial apples. Pit fruits only. Start with peaches, apricots, nectarines. He gave me a handout on allergies (IgE) and allergic rhinitis, a handout on dietary restrictions for control of gastroesophogeal reflux that had no helpful information, and a handout with instructions for APT (patch testing).
I was extremely overwhelmed and over saturated. The appointment seemed scattered, rushed, and did not provide any helpful information or answers. The word 'FPIES' was never said, nor a diagnosis of any kind. Continue Nutramigen Lipil formula, wait until she is a year, try pit fruits first, and wait to hear from him.
As he ran out of the patient room we were sitting in I stopped him and asked about the insurance company paying for the formula if she has a diagnosis. He laughed a most irritating scoff, and said 'Have you been watching the news? Insurance wont pay for anything right now.' And walked off.
It was a very difficult appointment. We waited an extensive amount of time in the waiting room, and then even longer in the patient room. When the doctor finally came in he barely stood still while talking and then exited the room in a hurry. He definitely hit one of my pet peeves - giving the impression that I had to talk fast enough to get it all in before he was gone or had decided not to listen anymore. He stood and read Ellie's file while in the room with us and asked questions about the GI's notes which(incorrectly)said that banana and rice were ok. He said this didn't make sense and he needed to talk to the G.I. and declared that we were going to do prick testing.
I at least saw this coming, because I have a history of IgE allergies and some severe food allergies. I have had my share of prick testing.
My response to the allergist was: I am familiar with prick testing as I have many of my own severe IgE allergies. 20 years ago when they drew my blood and sent it to UCD to study I was told they did not know much about food allergies and that prick testing was not helpful. I assume they know more now?
His response to me: Hmm. No. Not really. There is a lot we don't know and not much has changed in the last 20 years. The nurse will be in in a minute.
And out he went. Nurse came in. Prick testing completed and Ellie reacted to NOTHING. Not a single one. (tested for: milk, almond, cod, soy, rye, oats, barley, white potato, chicken, apple and the control)
Back in came the allergist. He wants to do patch testing next to see if we can find any leads. He needs to talk to the G.I. He will communicate with me over email or phone. He recommends we wait until she is a year old before proceeding with anything. He looked at the list from the G.I. and pediatric nutritionist. Do not trial apples. Pit fruits only. Start with peaches, apricots, nectarines. He gave me a handout on allergies (IgE) and allergic rhinitis, a handout on dietary restrictions for control of gastroesophogeal reflux that had no helpful information, and a handout with instructions for APT (patch testing).
I was extremely overwhelmed and over saturated. The appointment seemed scattered, rushed, and did not provide any helpful information or answers. The word 'FPIES' was never said, nor a diagnosis of any kind. Continue Nutramigen Lipil formula, wait until she is a year, try pit fruits first, and wait to hear from him.
As he ran out of the patient room we were sitting in I stopped him and asked about the insurance company paying for the formula if she has a diagnosis. He laughed a most irritating scoff, and said 'Have you been watching the news? Insurance wont pay for anything right now.' And walked off.
Monday, October 18, 2010
That Fateful Appointment
Nearing the end of June we headed back to the GI doctor for Ellie's blood test results and hopefully some answers. What we discussed:
Only on Nutramigen Lipil. She licks foods but most of the time will not eat them and is becoming more and more disinterested. Trigger foods result in vomiting and non-bloody diarrhea and then resolves. Foods tried included sweet potato, rice, banana, wheat products, barley, butternut squash.
I was unable to tell him if she cried more or less at any point because she had cried since birth with no visible pattern. She also slept at odd intervals and was completely unable to get on a schedule, so I could not address that as well. On occasion she did have low grade fevers that appeared at the same time as food exposure.
Blood test results showed mostly normal but some things on the low side. She showed negative to celiacs, and all IgE tests (RAST) came back negative except for a slight peanut. (I found out later that these tests were not very accurate anyway since she has to have eaten the foods for her blood to respond).
He disappeared to discuss with the pediatric nutritionist and then returned. "There is this very rare condition..." he began... "we have only seen a few"...."less than 3% of children"...."FPIES"...."I want her to see an allergist for a second opinion"...."no way to diagnose except by symptoms and process of eliminating anything else it could be"...."we dont really know"...."not a lot of info"...."there is another option for formula we should try"...."stop giving her foods for now"...."establish a plan with the nutritionist"..."here is a copy of the most recent study done"...
WHAT? WHAT was he talking about? Less than how many kids? They don't KNOW anything? This was not what I had wanted to hear. June. 2010. My Ellie is 10 months old and nearing her first birthday. No WAY. Something called FPIES? Food protein? She cant have protein? Rice has protein? So do green vegetables? All food? I just did a lot of nodding and repeating. The plan? Start with the least allergic foods with the lowest levels of protein, preferably all organic. Start with apples, apricots, plums. Nothing else. Keep with the Nutramigen Lipil. Soon she will be a year and we can try other options. And here is a referral to the allergist.
Only on Nutramigen Lipil. She licks foods but most of the time will not eat them and is becoming more and more disinterested. Trigger foods result in vomiting and non-bloody diarrhea and then resolves. Foods tried included sweet potato, rice, banana, wheat products, barley, butternut squash.
I was unable to tell him if she cried more or less at any point because she had cried since birth with no visible pattern. She also slept at odd intervals and was completely unable to get on a schedule, so I could not address that as well. On occasion she did have low grade fevers that appeared at the same time as food exposure.
Blood test results showed mostly normal but some things on the low side. She showed negative to celiacs, and all IgE tests (RAST) came back negative except for a slight peanut. (I found out later that these tests were not very accurate anyway since she has to have eaten the foods for her blood to respond).
He disappeared to discuss with the pediatric nutritionist and then returned. "There is this very rare condition..." he began... "we have only seen a few"...."less than 3% of children"...."FPIES"...."I want her to see an allergist for a second opinion"...."no way to diagnose except by symptoms and process of eliminating anything else it could be"...."we dont really know"...."not a lot of info"...."there is another option for formula we should try"...."stop giving her foods for now"...."establish a plan with the nutritionist"..."here is a copy of the most recent study done"...
WHAT? WHAT was he talking about? Less than how many kids? They don't KNOW anything? This was not what I had wanted to hear. June. 2010. My Ellie is 10 months old and nearing her first birthday. No WAY. Something called FPIES? Food protein? She cant have protein? Rice has protein? So do green vegetables? All food? I just did a lot of nodding and repeating. The plan? Start with the least allergic foods with the lowest levels of protein, preferably all organic. Start with apples, apricots, plums. Nothing else. Keep with the Nutramigen Lipil. Soon she will be a year and we can try other options. And here is a referral to the allergist.
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