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September 30, 2011
Dr. Varshney's office called - they have some of the results back (still waiting on the Upper GI results). There were no blood cells (red or white) in his stool sample, which is terrific! That means whatever is causing the mucus in his stool is not damaging his intestines enough to make them bleed. Most of his blood work looked great too, the only exception was that his electrolytes were low (which means he was dehydrated). This was a surprise since he hadn't vomited for a week before the blood was taken. He had his nine month check-up today, so we're checking his electrolytes again to make sure he's staying hydrated. We also confirmed that his weight has dropped from the 90th percentile to the 75th in the last three months, so even though he hasn't lost any weight and looks like a healthy guy, we've lost some ground.
So, the big thing going on with Matthew right now has to do with nutrition. I've always been like a squirrel when it comes to my milk - save those nuts for a rainy day. I wasn't done breastfeeding Abby when we found out we were pregnant with Matthew, which led to a LOT of supply issues. So this time around I made sure that I saved as much as possible because you never know when you'll need it. When he dropped his 11pm feeding I never did, which allowed me to save about 4 oz a day. I also drink Mother's Milk Tea multiple times a day to keep my supply up. By the time he was six months we had about 300 oz stored up in the freezer - having such a huge safety net was such a relief.
When we found out Matthew had FPIES one of the first things we were told is that all of that saved milk may not be safe for Matthew. Even though he was ok with it before, that was before he had reacted to rice and peas. I accidentally ate rice one night, the next day Matthew's diapers were totally different - instead of play-dough poop we had diarrhea - so we had our answer. And now we've had a few times that he's actually vomited with a FPIES reaction to my milk (it seems to happen every time I eat away from home). So all of the saved milk is unsafe for Matthew...I am SO bummed, we had to go back to zero reserved milk.
On top of it all, FPIES hit us right when Matthew started going everywhere...rolling, army crawling, crawling, and now climbing. All of that moving burns calories, so he started taking WAY more milk to compensate. He'd eat every two hours, even at night, to keep up with the number of calories he needed. Thank God I never stopped pumping at 11pm, all of the sudden he needed that feeding again. It was a huge change, before this he would sleep 8-10 hours straight at night, but it was fine...at least I was keeping up (barely). Every night there was at least 3 oz in the fridge as buffer for the next day. Then fast forward to this week - who knows what changed, it must be my hormones. I dropped 5 lbs in five days without trying, and my milk supply dropped too. One night there were 5 oz in the fridge, the next night just 2 oz, then the next night I had a hungry baby with no milk left. The fridge was empty, and so was I. We were just an ounce short, so we gave him water because we didn't have anything else. It hurt our hearts, but we didn't have another option.
So you're probably thinking "why didn't they just run to the store and pick up some formula?" I wish is was that simple. Mathew can't have normal formula, he has to have an elemental formula. One that has no proteins at all, and has everything already broken down to the amino acids so that his stomach can handle it. Neocate Infant is one of the few he can handle, and it's $$$. $38 for a 14 oz can...which can make roughly 90 fl. oz of "milk." It's so expensive that there are state laws requiring your insurance company to cover the cost. One of the FPIES dads actually had to quit his job and take a lower paying one so that they could qualify for WIC to cover the cost of the Neocate for their baby (it was costing them $800+/month). We are so blessed that we aren't in a situation like that - I have milk for him, and we can afford to cover the cost if we have to. But that illustrates how expensive it is. And it's not carried in the store. You can order it, but shipping would still take time.
I called Dr. Varshney's office the next morning, and they immediately had samples ready for us at their front desk. When they say sample, they mean an entire 14 oz can. And there were four of them! Today at Matthew's nine month check-up I mentioned that we had to start supplementing with Neocate, and his doctor (Dr. Pandya) gave us two more samples! A huge weight has been lifted off of my shoulders, but it's still a struggle. Matthew HATES the Neocate - the most we've been able to get him to take so far is a bottle that is 1/9 Neocate...but we'll work our way up from there.
Our other big concern is eating. Because of his reactions to rice and peas Matthew had a rough start learning to eat with a spoon. It wasn't until he was 7.5 months that we finally got him to take the spoon like he should. But the last month has been rough...there were two times that he threw up while we were feeding him potatoes. I don't know if it just wasn't thin enough for him or if we hit his gag reflex, but it totally turned him off of eating. Each time he went back to not allowing the spoon into his mouth - no trick would work. Just when we had finally gotten him to start accepting a spoon again he threw up the second time and it was worse. Matthew is a stubborn little guy, and smart. It's been a real struggle to get him to trust us with food on his spoon.
Luckily we found out about a product called CheeCha Puffs from Canada that are totally made out of potato - which means Matthew can have them! We ordered twelve bags (had to take a leap of faith, b/c that was the only way we could get them here in TX) and he LOVES them! They have a great shape for his little hands to grasp, and get mushy when he gnaws on them with his gums - we couldn't be more pleased. He doesn't do great at getting them to stay in his mouth, but he grabs them and tries his hardest to shove them in. If we crunch one up and put it on a spoon he opens for it! So we have forward progress, but are still having trouble getting him to open for potatoes or carrots (or broccoli). We're trying to move forward without pushing him too hard, we've pushed too much before and had to start all over again. So our snail's pace of introducing foods has turned into a standstill for the last month. If he doesn't start accepting all of his foods on a spoon in the next few weeks we're going to have to bring in an occupational therapist to teach him how to eat. So, please say a few prayers that Matthew starts eating like a champ soon!
So, the big thing going on with Matthew right now has to do with nutrition. I've always been like a squirrel when it comes to my milk - save those nuts for a rainy day. I wasn't done breastfeeding Abby when we found out we were pregnant with Matthew, which led to a LOT of supply issues. So this time around I made sure that I saved as much as possible because you never know when you'll need it. When he dropped his 11pm feeding I never did, which allowed me to save about 4 oz a day. I also drink Mother's Milk Tea multiple times a day to keep my supply up. By the time he was six months we had about 300 oz stored up in the freezer - having such a huge safety net was such a relief.
When we found out Matthew had FPIES one of the first things we were told is that all of that saved milk may not be safe for Matthew. Even though he was ok with it before, that was before he had reacted to rice and peas. I accidentally ate rice one night, the next day Matthew's diapers were totally different - instead of play-dough poop we had diarrhea - so we had our answer. And now we've had a few times that he's actually vomited with a FPIES reaction to my milk (it seems to happen every time I eat away from home). So all of the saved milk is unsafe for Matthew...I am SO bummed, we had to go back to zero reserved milk.
On top of it all, FPIES hit us right when Matthew started going everywhere...rolling, army crawling, crawling, and now climbing. All of that moving burns calories, so he started taking WAY more milk to compensate. He'd eat every two hours, even at night, to keep up with the number of calories he needed. Thank God I never stopped pumping at 11pm, all of the sudden he needed that feeding again. It was a huge change, before this he would sleep 8-10 hours straight at night, but it was fine...at least I was keeping up (barely). Every night there was at least 3 oz in the fridge as buffer for the next day. Then fast forward to this week - who knows what changed, it must be my hormones. I dropped 5 lbs in five days without trying, and my milk supply dropped too. One night there were 5 oz in the fridge, the next night just 2 oz, then the next night I had a hungry baby with no milk left. The fridge was empty, and so was I. We were just an ounce short, so we gave him water because we didn't have anything else. It hurt our hearts, but we didn't have another option.
So you're probably thinking "why didn't they just run to the store and pick up some formula?" I wish is was that simple. Mathew can't have normal formula, he has to have an elemental formula. One that has no proteins at all, and has everything already broken down to the amino acids so that his stomach can handle it. Neocate Infant is one of the few he can handle, and it's $$$. $38 for a 14 oz can...which can make roughly 90 fl. oz of "milk." It's so expensive that there are state laws requiring your insurance company to cover the cost. One of the FPIES dads actually had to quit his job and take a lower paying one so that they could qualify for WIC to cover the cost of the Neocate for their baby (it was costing them $800+/month). We are so blessed that we aren't in a situation like that - I have milk for him, and we can afford to cover the cost if we have to. But that illustrates how expensive it is. And it's not carried in the store. You can order it, but shipping would still take time.
I called Dr. Varshney's office the next morning, and they immediately had samples ready for us at their front desk. When they say sample, they mean an entire 14 oz can. And there were four of them! Today at Matthew's nine month check-up I mentioned that we had to start supplementing with Neocate, and his doctor (Dr. Pandya) gave us two more samples! A huge weight has been lifted off of my shoulders, but it's still a struggle. Matthew HATES the Neocate - the most we've been able to get him to take so far is a bottle that is 1/9 Neocate...but we'll work our way up from there.
Our other big concern is eating. Because of his reactions to rice and peas Matthew had a rough start learning to eat with a spoon. It wasn't until he was 7.5 months that we finally got him to take the spoon like he should. But the last month has been rough...there were two times that he threw up while we were feeding him potatoes. I don't know if it just wasn't thin enough for him or if we hit his gag reflex, but it totally turned him off of eating. Each time he went back to not allowing the spoon into his mouth - no trick would work. Just when we had finally gotten him to start accepting a spoon again he threw up the second time and it was worse. Matthew is a stubborn little guy, and smart. It's been a real struggle to get him to trust us with food on his spoon.
Luckily we found out about a product called CheeCha Puffs from Canada that are totally made out of potato - which means Matthew can have them! We ordered twelve bags (had to take a leap of faith, b/c that was the only way we could get them here in TX) and he LOVES them! They have a great shape for his little hands to grasp, and get mushy when he gnaws on them with his gums - we couldn't be more pleased. He doesn't do great at getting them to stay in his mouth, but he grabs them and tries his hardest to shove them in. If we crunch one up and put it on a spoon he opens for it! So we have forward progress, but are still having trouble getting him to open for potatoes or carrots (or broccoli). We're trying to move forward without pushing him too hard, we've pushed too much before and had to start all over again. So our snail's pace of introducing foods has turned into a standstill for the last month. If he doesn't start accepting all of his foods on a spoon in the next few weeks we're going to have to bring in an occupational therapist to teach him how to eat. So, please say a few prayers that Matthew starts eating like a champ soon!
