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January 10, 2012
Happy New Year!
The holidays were busy for us...we celebrated Christmas with family, Matthew turned one (I can't believe he's no longer a baby), and he took his first steps! We didn't have cake at his birthday party, but we did have a scoop of coconut sorbet with a candle in it! I've realized, it's not really about the cake, it's about the look on their face when they see that candle, and everyone is singing for them :) We're still waiting on the test results from Dr. Gibson's office, and occupational therapy (OT) has been paying off. Unfortunately, Matthew failed another food over the holidays.
I guess I'll start with OT. Matthew is such a strong willed child - if he doesn't want to do something, there is no way to trick him into doing it! Our last two sessions with the therapist haven't gone that well. This little guy just isn't a morning person when it comes to showing off his eating skills. At home, he's been off and on. He was actually leaning into the spoon to take bites before the holidays, but two days before we headed to the lake he stopped. After a few days he got back into it, and there were a couple weeks there where meals were actually enjoyable :) Matthew even let us spoon feed him 3/4 of an avocado one night! We had increased his number of meals to three a day because he's been doing so well with a spoon, but now he seems to be on an eating strike again. We'll push through it....it's just a reminder to not let our guard down. Even though the therapist hasn't seen Matthew eat, based on what I've told her she thinks we're ready to try it on our own - so no more weekly appointments - Yaaaayyyyy! We'll go back in a month for a follow up, and hopefully OT will be a thing of the past :)
The real bummer over the last month was Matthew failing venison two days before Christmas. I've always hunted, and we have a family farm, so I thought that deer meat would be our best bet. We would know exactly where the meat came from, how it was processed, etc. Plus, no FPIES kid has ever failed deer meat. My Mom's boyfriend, Fred, got a deer opening weekend and gave the meat to us. His son, David, cleaned it while we all watched. Then we took it home, and I used my Kitchen Aid meat grinder attachment to turn it into deer hamburger. When it was time to trial venison I browned the meat, used the food processor to get it to a super-fine consistency, and then mixed it in with some avocado to moisten it up. Matthew LOVED it! That's when we he really began eating like a champ :)
His venison trial was actually over when Matthew failed it on his fifteenth day. We couldn't believe it...but it was exactly two hours after ingestion (of one tablespoon) when he started vomiting and dry heaving repeatedly. He became lethargic when he started dry heaving, so we were keeping a close eye on him. I know we said we'd take him to the ER the next time that happened, but were were in the middle of no where and didn't want to deal with a small hospital if we didn't have to. Thirty minutes after becoming lethargic he dry heaved again, and then came out of it. Within five minutes he was alert but quiet, so we worked on getting fluids into him and decided we didn't need to go to the hospital. It took almost three hours before he could hold down more than just a small amount of water, but other than that he seemed fine. Both Nick and I felt that we needed to confirm the fail with another trial, but we also wanted to wait until we were at home and after Matthew's birthday party. We didn't want to make him sick again, but we were at my Mom's house and he had tolerated venison for two weeks already, so there was a real possibility that it wasn't the deer meat.
So, on New Year's Day we trialed venison again - just one teaspoon. And two hours later, we had our answer - it really was the deer meat :( FPIES is so odd, it's like a little clock when your kid has a reaction. This time we chose not to take him to the ER because it was identical to his first venison reaction. I really felt like they would laugh at me if I showed up wanting an IV for an alert, happy baby. Thirty minutes after becoming lethargic he snapped out of it again. Matthew even started playing and we did a video conference with his grandparents in Minnesota. Other than not holding down liquids, he seemed totally fine - happy even. But this time we did give him some pedialyte...let me just say that they REALLY need to make a sugar-free version...after just one ounce Matthew was bouncing off the walls! It took three hours to get him to hold down a decent amount of fluid, and he didn't make a wet diaper for 18 hours.
I called Dr. Varshney, Matthew's allergist, to tell her about the venison fail. She said that all mammalian protein is nearly identical in structure, so Matthew has to stay away from all meats now. When I asked about fish, she said it's tempting, but it's also considered more "allergenic" in the traditional sense, and that there are journal articles detailing FPIES to fish, so she wants us to hold off. She was also shocked at a fifteen day fail, and at a "meat" fail in general. I know there are kids out there who have failed meat, because their parents are on facebook and babycenter, but there are no journal articles or studies that document a FPIES reaction to any mammalian protein. Dr. Varshney is also worried about him having any fails in general, since Dr. Gibson is still trying to figure out what's going on with Matthew metabolically. With Matthew's traditionally low bicarbonate levels she's really worried about what's going on in his body while he's having a reaction. So, for right now, Dr. Varshney wants us to suspend all food trials (we're going to finish up coconut, since we're on day eleven). She agrees with me that no ER doctor is going to give an IV to an alert, happy baby, but she wants us to go in anyways if Matthew has a reaction (or head to our pediatrician's if it's during her office hours). She wants his vitals taken, and to get his blood drawn to see what his bicarb levels look like. I'm totally fine with this - it's actually a relief, no more guesswork. The next time he throws up twice I'm just putting him in the car and going. Maybe we'll make it there before he recovers from being lethargic.
I'm trying not to get to down about the dietary implications, but it's hard. Matthew can't have any meat, grains, or legumes now. Our next trial was supposed to be dairy, which would give me some hope of getting to stop breastfeeding this guy. Don't get me wrong, I feel very blessed that I am able to breastfeed my son, but it would be nice to know how long I will have to keep going. With the day fifteen fail our trial length has been extended back to three weeks again. And the dairy trial, which would take over a month (one week each for baked milk, boiled milk, yogurt, cheese, then actual milk), will now take over two months. And even when he does pass dairy, will I even be able to stop breastfeeding? The only food groups he can eat are vegetables and fruits. Where will he get his nutrition from if it's not from me? It's overwhelming, but there's not much I can do about it now, so I'm trying not to think about it. I think I see a visit to a nutritionist in our future...
On the up side, the venison fail has kicked us back into "FPIES parents" mode. It had been months since his last fail, and though we know Matthew has FPIES, it had started to feel more like a dream. I'd be feeding Abby a grape and fantasize about just cutting one up and handing it to Matthew. "What's the worst that could happen?" I would never have done such a thing, but now those fantasies are a thing of the past. I signed Matthew up for Medic Alert yesterday, and made little food allergy ID tags for his diaper bag and car seat this past weekend. Matthew went to the nursery at church for the first time on Sunday, and the attendants said they really like the ID tag!
I'll update again when the test results come in from Dr. Gibson.
The holidays were busy for us...we celebrated Christmas with family, Matthew turned one (I can't believe he's no longer a baby), and he took his first steps! We didn't have cake at his birthday party, but we did have a scoop of coconut sorbet with a candle in it! I've realized, it's not really about the cake, it's about the look on their face when they see that candle, and everyone is singing for them :) We're still waiting on the test results from Dr. Gibson's office, and occupational therapy (OT) has been paying off. Unfortunately, Matthew failed another food over the holidays.
I guess I'll start with OT. Matthew is such a strong willed child - if he doesn't want to do something, there is no way to trick him into doing it! Our last two sessions with the therapist haven't gone that well. This little guy just isn't a morning person when it comes to showing off his eating skills. At home, he's been off and on. He was actually leaning into the spoon to take bites before the holidays, but two days before we headed to the lake he stopped. After a few days he got back into it, and there were a couple weeks there where meals were actually enjoyable :) Matthew even let us spoon feed him 3/4 of an avocado one night! We had increased his number of meals to three a day because he's been doing so well with a spoon, but now he seems to be on an eating strike again. We'll push through it....it's just a reminder to not let our guard down. Even though the therapist hasn't seen Matthew eat, based on what I've told her she thinks we're ready to try it on our own - so no more weekly appointments - Yaaaayyyyy! We'll go back in a month for a follow up, and hopefully OT will be a thing of the past :)
The real bummer over the last month was Matthew failing venison two days before Christmas. I've always hunted, and we have a family farm, so I thought that deer meat would be our best bet. We would know exactly where the meat came from, how it was processed, etc. Plus, no FPIES kid has ever failed deer meat. My Mom's boyfriend, Fred, got a deer opening weekend and gave the meat to us. His son, David, cleaned it while we all watched. Then we took it home, and I used my Kitchen Aid meat grinder attachment to turn it into deer hamburger. When it was time to trial venison I browned the meat, used the food processor to get it to a super-fine consistency, and then mixed it in with some avocado to moisten it up. Matthew LOVED it! That's when we he really began eating like a champ :)
His venison trial was actually over when Matthew failed it on his fifteenth day. We couldn't believe it...but it was exactly two hours after ingestion (of one tablespoon) when he started vomiting and dry heaving repeatedly. He became lethargic when he started dry heaving, so we were keeping a close eye on him. I know we said we'd take him to the ER the next time that happened, but were were in the middle of no where and didn't want to deal with a small hospital if we didn't have to. Thirty minutes after becoming lethargic he dry heaved again, and then came out of it. Within five minutes he was alert but quiet, so we worked on getting fluids into him and decided we didn't need to go to the hospital. It took almost three hours before he could hold down more than just a small amount of water, but other than that he seemed fine. Both Nick and I felt that we needed to confirm the fail with another trial, but we also wanted to wait until we were at home and after Matthew's birthday party. We didn't want to make him sick again, but we were at my Mom's house and he had tolerated venison for two weeks already, so there was a real possibility that it wasn't the deer meat.
So, on New Year's Day we trialed venison again - just one teaspoon. And two hours later, we had our answer - it really was the deer meat :( FPIES is so odd, it's like a little clock when your kid has a reaction. This time we chose not to take him to the ER because it was identical to his first venison reaction. I really felt like they would laugh at me if I showed up wanting an IV for an alert, happy baby. Thirty minutes after becoming lethargic he snapped out of it again. Matthew even started playing and we did a video conference with his grandparents in Minnesota. Other than not holding down liquids, he seemed totally fine - happy even. But this time we did give him some pedialyte...let me just say that they REALLY need to make a sugar-free version...after just one ounce Matthew was bouncing off the walls! It took three hours to get him to hold down a decent amount of fluid, and he didn't make a wet diaper for 18 hours.
I called Dr. Varshney, Matthew's allergist, to tell her about the venison fail. She said that all mammalian protein is nearly identical in structure, so Matthew has to stay away from all meats now. When I asked about fish, she said it's tempting, but it's also considered more "allergenic" in the traditional sense, and that there are journal articles detailing FPIES to fish, so she wants us to hold off. She was also shocked at a fifteen day fail, and at a "meat" fail in general. I know there are kids out there who have failed meat, because their parents are on facebook and babycenter, but there are no journal articles or studies that document a FPIES reaction to any mammalian protein. Dr. Varshney is also worried about him having any fails in general, since Dr. Gibson is still trying to figure out what's going on with Matthew metabolically. With Matthew's traditionally low bicarbonate levels she's really worried about what's going on in his body while he's having a reaction. So, for right now, Dr. Varshney wants us to suspend all food trials (we're going to finish up coconut, since we're on day eleven). She agrees with me that no ER doctor is going to give an IV to an alert, happy baby, but she wants us to go in anyways if Matthew has a reaction (or head to our pediatrician's if it's during her office hours). She wants his vitals taken, and to get his blood drawn to see what his bicarb levels look like. I'm totally fine with this - it's actually a relief, no more guesswork. The next time he throws up twice I'm just putting him in the car and going. Maybe we'll make it there before he recovers from being lethargic.
I'm trying not to get to down about the dietary implications, but it's hard. Matthew can't have any meat, grains, or legumes now. Our next trial was supposed to be dairy, which would give me some hope of getting to stop breastfeeding this guy. Don't get me wrong, I feel very blessed that I am able to breastfeed my son, but it would be nice to know how long I will have to keep going. With the day fifteen fail our trial length has been extended back to three weeks again. And the dairy trial, which would take over a month (one week each for baked milk, boiled milk, yogurt, cheese, then actual milk), will now take over two months. And even when he does pass dairy, will I even be able to stop breastfeeding? The only food groups he can eat are vegetables and fruits. Where will he get his nutrition from if it's not from me? It's overwhelming, but there's not much I can do about it now, so I'm trying not to think about it. I think I see a visit to a nutritionist in our future...
On the up side, the venison fail has kicked us back into "FPIES parents" mode. It had been months since his last fail, and though we know Matthew has FPIES, it had started to feel more like a dream. I'd be feeding Abby a grape and fantasize about just cutting one up and handing it to Matthew. "What's the worst that could happen?" I would never have done such a thing, but now those fantasies are a thing of the past. I signed Matthew up for Medic Alert yesterday, and made little food allergy ID tags for his diaper bag and car seat this past weekend. Matthew went to the nursery at church for the first time on Sunday, and the attendants said they really like the ID tag!
I'll update again when the test results come in from Dr. Gibson.
