Yesterday we had a great morning. My shiny, happy boy had returned. Xander had a NORMAL diaper yesterday afternoon.
I was on top of the world.
And it quickly came crashing down.
So I went on the hunt again, in preparation for our appointment today.
And I found out exactly what I suspected. We still have too many variables in Xander's diet to really know much.
The first issue we have is consistency of formula preparation. I found that while the formula directions all say to use the scoop provided or a gram scale, that the scoop really isn't very accurate. Other allergy/gastro moms have reported that this inaccuracy has can caused issues with children that are especially sensitive. The most exact/consistent we could get would be to use Ready to Feed formula. But that comes at a cost too. We'll be purchasing a gram scale for Xander today.
Next, we just have too many formulas going to be able to narrow anything down. We have him on THREE formulas (doctor recommended,of course) : Neocate Jr. Chocolate, Elecare Jr. Vanilla and Elecare Jr. Unflavored with Pre-Biotics.
The flavored formulas contain a sweetener which some kids have a hard time with.
The unflavored formula contains Pre-Biotics and you guessed it, some children have a hard time with that too.
Of course, the "ideal" in a perfect world scenario would be to put him on ONE formula without Pre-Biotics that is unflavored. But he won't drink unflavored by itself--at all. (We've been using the unflavored mixed with the flavored.)
So our options are severely limited. I've read about an approach where if the child won't take the unflavored formula, that they put an NG tube in, which is an admittedly aggressive approach to find the child's baseline.
Then once you find a baseline, you can start adding things back in.
Brandon and I are going to be discussing our concerns with Dr. G this afternoon during Xander's follow up appointment. We really don't want to have to tube Xander. But, we would like to see some progress. Please pray that our concerns are heard and we come out with a game plan. And maybe a little hope too.
~Stephanie
Showing posts with label FPIES. Show all posts
Showing posts with label FPIES. Show all posts
Wednesday, January 18, 2012
Monday, January 16, 2012
Speech has returned...
I find this to be an interesting phenomenon.
We originally started teaching Xander sign language because we felt he was frustrated with his lack of ability to effectively communicate with us. He slowly picked up words but was very hard to understand.
As he started the process of starting his formula, we noticed that he rapidly picked up words. His babbles turned into toddler sentences literally almost overnight.
Brandon and I just looked at each other with disbelief. Almost every night we would lay in bed and discuss which words he said that day. But, a part of us thought that perhaps this was a coincidence.
When Xander first started showing signs of a reaction from this past Thursday night, we noticed that his speech was one of the first things to suffer. Friday, I don't think he said more than maybe 5 words. "No!" was a popular word that day. Along with "Han-Manny" (Handy Manny.) He spent most of his day screaming and crying. He was a pitiful sight. And I began to panic a bit at the thought of him regressing so much.
Saturday and Sunday some more words returned. But it still wasn't near the language explosion that we originally experienced when he first started the formula.
But tonight? Tonight, my little talkative boy returned. He was such a chatterbox. He held conversations with us. He repeated what he heard on the tv and around him. He recited his colors. He sang songs and named letters. He asked us to identify different things.
Now, am I saying that the reaction caused him to lose speech and the other formula cured him? No! What I am saying is this: Brandon and I believe that he was in such pain and discomfort that speaking was really the last thing on his mind.
Do you feel chatty when you have an upset stomach?
No? Well, neither does he.
I have to say, this whole thing has been very frustrating and discouraging. It is very difficult to feel like you can't safely do a very basic thing for your child such as feed them. It is heartbreaking to not be able to help your child feel better. These reactions really just have to wear off and only time can help that.
I've researched and honestly, I'm not finding much encouragement for the future. It is a hard reality that I'm really struggling with and haven't quite accepted yet. NO ONE can tell me how many safe foods Xander will ultimately have. A lot of the blogs of other FPIES parents only have a handful of safe foods. Food trialing takes ALOT of patience and time. I've only found a single case where a child was diagnosed this "late" and that child was completely tube fed. It's a lonely and frustrating place to be.
But for now, this is where I am. Of course, I'm still searching and hoping for help for Xander so that he has the best chance at a sense of normalcy as possible. You should see the list of questions for the allergist on Wednesday! This mama bear isn't going out that easy. But there is a small part of me that is starting to realize that this isn't going to be an easy or quick road and maybe I'll have to accept a long term, new normal.
God give me the grace and the strength.
~Stephanie
We originally started teaching Xander sign language because we felt he was frustrated with his lack of ability to effectively communicate with us. He slowly picked up words but was very hard to understand.
As he started the process of starting his formula, we noticed that he rapidly picked up words. His babbles turned into toddler sentences literally almost overnight.
Brandon and I just looked at each other with disbelief. Almost every night we would lay in bed and discuss which words he said that day. But, a part of us thought that perhaps this was a coincidence.
When Xander first started showing signs of a reaction from this past Thursday night, we noticed that his speech was one of the first things to suffer. Friday, I don't think he said more than maybe 5 words. "No!" was a popular word that day. Along with "Han-Manny" (Handy Manny.) He spent most of his day screaming and crying. He was a pitiful sight. And I began to panic a bit at the thought of him regressing so much.
Saturday and Sunday some more words returned. But it still wasn't near the language explosion that we originally experienced when he first started the formula.
But tonight? Tonight, my little talkative boy returned. He was such a chatterbox. He held conversations with us. He repeated what he heard on the tv and around him. He recited his colors. He sang songs and named letters. He asked us to identify different things.
Now, am I saying that the reaction caused him to lose speech and the other formula cured him? No! What I am saying is this: Brandon and I believe that he was in such pain and discomfort that speaking was really the last thing on his mind.
Do you feel chatty when you have an upset stomach?
No? Well, neither does he.
I have to say, this whole thing has been very frustrating and discouraging. It is very difficult to feel like you can't safely do a very basic thing for your child such as feed them. It is heartbreaking to not be able to help your child feel better. These reactions really just have to wear off and only time can help that.
I've researched and honestly, I'm not finding much encouragement for the future. It is a hard reality that I'm really struggling with and haven't quite accepted yet. NO ONE can tell me how many safe foods Xander will ultimately have. A lot of the blogs of other FPIES parents only have a handful of safe foods. Food trialing takes ALOT of patience and time. I've only found a single case where a child was diagnosed this "late" and that child was completely tube fed. It's a lonely and frustrating place to be.
But for now, this is where I am. Of course, I'm still searching and hoping for help for Xander so that he has the best chance at a sense of normalcy as possible. You should see the list of questions for the allergist on Wednesday! This mama bear isn't going out that easy. But there is a small part of me that is starting to realize that this isn't going to be an easy or quick road and maybe I'll have to accept a long term, new normal.
God give me the grace and the strength.
~Stephanie
Sunday, January 15, 2012
FPIES: Food Protein Intolerance Enterocolitis Syndrome
Our allergist has been very good about keeping in touch with us this weekend. I think a um.. harsh, blunt conversation with a certain Papa Bear let her know just how disappointed we were that we were left hanging on Friday. I can't say I blame him. I was near hysterics. *blush*
Anyway, so we spoke with Dr. G yesterday (Saturday) and discussed Xander's status. He was still having diarrhea and had almost quit drinking on us. By 3pm, I had only gotten him to drink 9 ounces of his formula. According to the doctor, he needs 48 ounces to grow. (I know that before I said 32, but that was a miscalculation based on him still supplementing some from food, which he is not.)
He was still screaming and sucking his thumb violently.
So we asked her if this is still considered Multiple Food Protein Intolerance. She said that she had changed his diagnosis to Food Protein Intolerance Enterocolitis Syndrome (FPIES) when she went back through his charts. He has displayed low blood pressure over and over and while he doesn't have the violent vomiting that occurs commonly with FPIES, he does have the diarrhea component. Our allergist does believe that what we thought was occasional reflux was actually vomiting since all of his reflux testing that the gastroenterologist did came back negative. He hasn't done that at all since being on the elemental formula.
We are to follow up with her and the gastroenterologist.
So what does that mean for us? Well, so far not much. There is a possibility that he could go into shock after a vomiting/diarrhea episode and we'll be careful to look for that. Again, she has told us that because he is being diagnosed when he is older than a "typical" FPIES patient that this may be a long term thing for him. (This child was diagnosed as a toddler and only has 5 safe foods.)
I networked with some other allergy/gastro moms and they have all highly encouraged us to go to one of the top specialists in the country-- especially since he is now limited as to what elemental formulas he can have and he still has zero safe foods. Apparently Cincinnati Children's, Boston Children's and Children's Hospital of Philadelphia all have highly respected programs. But it could be months before we can get in.
Do you have goosebumps yet? Annalise was going to be followed by Children's Hospital of Philadelphia.
Hearing the hospital's name brought me instant peace. It was as if my mind said "Oh yeah...this isn't a surprise for God! Annalise was not a mistake for our family. It didn't work out the way we thought it would but crossing paths with her had meaning and there was a divine reason that we did."
So we just keep going. He's still our Xander even when he isn't feeling 100%. (I don't know if he is feeling better today yet because he is still sleeping. I haven't woken him for church.) We love him and will do whatever it takes to help him. We vowed that 2.5 years ago and that hasn't changed. We don't know where we will end up with him, but then we don't know that about any of our other children either.
But we know and love the One Who does.
Off to get ready for worship,
Stephanie
Anyway, so we spoke with Dr. G yesterday (Saturday) and discussed Xander's status. He was still having diarrhea and had almost quit drinking on us. By 3pm, I had only gotten him to drink 9 ounces of his formula. According to the doctor, he needs 48 ounces to grow. (I know that before I said 32, but that was a miscalculation based on him still supplementing some from food, which he is not.)
He was still screaming and sucking his thumb violently.
So we asked her if this is still considered Multiple Food Protein Intolerance. She said that she had changed his diagnosis to Food Protein Intolerance Enterocolitis Syndrome (FPIES) when she went back through his charts. He has displayed low blood pressure over and over and while he doesn't have the violent vomiting that occurs commonly with FPIES, he does have the diarrhea component. Our allergist does believe that what we thought was occasional reflux was actually vomiting since all of his reflux testing that the gastroenterologist did came back negative. He hasn't done that at all since being on the elemental formula.
We are to follow up with her and the gastroenterologist.
So what does that mean for us? Well, so far not much. There is a possibility that he could go into shock after a vomiting/diarrhea episode and we'll be careful to look for that. Again, she has told us that because he is being diagnosed when he is older than a "typical" FPIES patient that this may be a long term thing for him. (This child was diagnosed as a toddler and only has 5 safe foods.)
I networked with some other allergy/gastro moms and they have all highly encouraged us to go to one of the top specialists in the country-- especially since he is now limited as to what elemental formulas he can have and he still has zero safe foods. Apparently Cincinnati Children's, Boston Children's and Children's Hospital of Philadelphia all have highly respected programs. But it could be months before we can get in.
Do you have goosebumps yet? Annalise was going to be followed by Children's Hospital of Philadelphia.
Hearing the hospital's name brought me instant peace. It was as if my mind said "Oh yeah...this isn't a surprise for God! Annalise was not a mistake for our family. It didn't work out the way we thought it would but crossing paths with her had meaning and there was a divine reason that we did."
So we just keep going. He's still our Xander even when he isn't feeling 100%. (I don't know if he is feeling better today yet because he is still sleeping. I haven't woken him for church.) We love him and will do whatever it takes to help him. We vowed that 2.5 years ago and that hasn't changed. We don't know where we will end up with him, but then we don't know that about any of our other children either.
But we know and love the One Who does.
Off to get ready for worship,
Stephanie
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