Yep, Fail! Coconut, hemp and a previous safe food, cherries. It has been a tough few months. Many sleepless night. Many cranky days. We were on gut rest for a month. We still got small amounts of mucus after the cherries. Our dietician suggested we push on with the next trial regardless.
So what did we pick? Deer! I have a lovely friend who gave us two packs of deer meat back in December. They were just sitting there waiting for me. I busted out the crock pot and cooked that meat for 14 hours. Then blended the heck out of it. We are on day six. All seems fine. Evey even slept through the night a few nights in a row. Her mood is pleasant. She will only eat about an oz. We have to be very careful about the texture and where we place it on her tounge, otherwise she will vomit up everything. All that hard work on the floor.
We will take a break for a few days then reintroduce. Let us hope and pray this will be her first real safe!
Tuesday, June 24, 2014
Monday, April 7, 2014
Don't Mind My Depression
Yeah, I can say it... I am depressed. And who wouldn't be? Sleep really doesn't happen. Well, it does but I don't sleep for longer than 3 hour periods. Food, feedings, supplements, medications, etc are always on my mind. Worry and gilt plague me daily. Angry riddles every facet of my mind. Angry is always my first emotion. But this is the first time it has grated down to full blown depression and it sucks. I haven't turned to meds. Some close friends have asked and I just say they are not for me. I get that bewildered look from my friends. That look of "If I was in your shoes I would ask the doctor to snow me out of my mind." I turned back to food, that is my drug of choice. This has only caused me to feel even worse about my body image. I feel like utter CRAP. I ache. I have acne. My gi tract is a mess (oh something you really care about). My clothes aren't fitting right. I am puffy. I don't have the energy to deal with Kwash. I am FALLING APART.
I lost so much weight after the birth of Evelyn. Thing is I was so stressed feeding her all the time, I never ate. Fast forward to Christmas time when things seemed to calm a bit, I found food and it found me!
Chocolate, sugar, processed crap. I even started sneaking FAST FOOD. If you know me, you know how I feel about fast food. It is disgusting, terrible for you. BUT OH MAN does it give you a buzz. Yes, food makes me feel high. If not for a short period of time, at least I could escape for those few moments while Kwashi slept and I chowed down.
But I can't do it anymore. It is a vicious cycle. The food feeds my fattiness which feeds my depression which feeds my need to seek out terrible foods to try and forget my kid can't eat food. F'ed up, I know...
So now I have made the effort of get off this crap I would NEVER feed my child. How can I help her if I cannot help myself?
I lost so much weight after the birth of Evelyn. Thing is I was so stressed feeding her all the time, I never ate. Fast forward to Christmas time when things seemed to calm a bit, I found food and it found me!
Chocolate, sugar, processed crap. I even started sneaking FAST FOOD. If you know me, you know how I feel about fast food. It is disgusting, terrible for you. BUT OH MAN does it give you a buzz. Yes, food makes me feel high. If not for a short period of time, at least I could escape for those few moments while Kwashi slept and I chowed down.
But I can't do it anymore. It is a vicious cycle. The food feeds my fattiness which feeds my depression which feeds my need to seek out terrible foods to try and forget my kid can't eat food. F'ed up, I know...
So now I have made the effort of get off this crap I would NEVER feed my child. How can I help her if I cannot help myself?
OH the pre-e body habitus (31 weeks).
Friday, April 4, 2014
Bitter Can Often Be Sweet
Today was the day we have been waiting for, Kwashi was to see her new GI doctor. I have been a wreck about it for a week. So why were we to see a new doc...? Her issues were all behavioral right, says her old gi doc. Well feeding therapy were in agreement there was an underlying pathology causing Kwashi's feeding refusal.
The office visit started as usual with a fellow and a medical student. Her history and physical took almost an hour to complete. Remember this has been going on for 15 months. The doctors left the room and I paced. Looking at my husband, playing with the baby... Then the doctor came in.
He was a nice Hindi man. Introducing himself and intently examining our toddler. He didn't say much for a while. He did a physical exam and interacted with Kwashi. I could tell he was happy with her development. In children with feeding refusal the concern can point towards autism or sensory processing issues. He had no concern after interacting with our little ham. Sitting down he just came out and said it, " Your daughter has something called FPIES, Food Protein Induced Enterocolitis Syndrome." I tried not to cry... I knew this already! I have been saying it for a year! That is why I was here?! I really did try to hold it all in but I kinda stopped listening. I don't know if he went into explaining what it was but I just started crying. Every past doctor just looked at me like, WHAT?! That's super rare, she doesn't vomit to shock. No way, No How. Well crap faces I know more than you! Sad. Open I book. Do your CME on something other than the normal. Seriously. Take a MOM SERIOUS.
Not every kid will out grow their reflux, allergies, insert whatever issue your child may have by 3, 6, 9, 12 months. For 12 months I questioned the corn in her formula? Corn in her meds... Food in general. Chronic FPIES??? NOPE I was told. Impossible. "NO kid reacts to elemental formula. The corn protein is taken out." I am not going to get into detail about the conversation. Basically her doctor felt she is not at baseline and the formula is the cause of many of her food fails......... OH STING! Mommy guts are generally right.
So what do we do with this new diagnosis? How does this change the game? It doesn't. There is no test, no intervention. The intervention is removing the irritant. And that my friend is a tricky, tricky beast. I don't know how to feel at this moment in time. A bit numb, a bit angry, a bit paralyzed with fear. You would think hearing it would make me feel better, make me feel validated. It doesn't. It leads to more questions unanswered.
Remember you are your child's greatest advocate. I would have took her to the moon to see her new GI. I would spend every dime we have to make her gut a happy place... But none of that matter because time is all we have. Time and our love for our Kwashi.
The office visit started as usual with a fellow and a medical student. Her history and physical took almost an hour to complete. Remember this has been going on for 15 months. The doctors left the room and I paced. Looking at my husband, playing with the baby... Then the doctor came in.
He was a nice Hindi man. Introducing himself and intently examining our toddler. He didn't say much for a while. He did a physical exam and interacted with Kwashi. I could tell he was happy with her development. In children with feeding refusal the concern can point towards autism or sensory processing issues. He had no concern after interacting with our little ham. Sitting down he just came out and said it, " Your daughter has something called FPIES, Food Protein Induced Enterocolitis Syndrome." I tried not to cry... I knew this already! I have been saying it for a year! That is why I was here?! I really did try to hold it all in but I kinda stopped listening. I don't know if he went into explaining what it was but I just started crying. Every past doctor just looked at me like, WHAT?! That's super rare, she doesn't vomit to shock. No way, No How. Well crap faces I know more than you! Sad. Open I book. Do your CME on something other than the normal. Seriously. Take a MOM SERIOUS.
Not every kid will out grow their reflux, allergies, insert whatever issue your child may have by 3, 6, 9, 12 months. For 12 months I questioned the corn in her formula? Corn in her meds... Food in general. Chronic FPIES??? NOPE I was told. Impossible. "NO kid reacts to elemental formula. The corn protein is taken out." I am not going to get into detail about the conversation. Basically her doctor felt she is not at baseline and the formula is the cause of many of her food fails......... OH STING! Mommy guts are generally right.
So what do we do with this new diagnosis? How does this change the game? It doesn't. There is no test, no intervention. The intervention is removing the irritant. And that my friend is a tricky, tricky beast. I don't know how to feel at this moment in time. A bit numb, a bit angry, a bit paralyzed with fear. You would think hearing it would make me feel better, make me feel validated. It doesn't. It leads to more questions unanswered.
Remember you are your child's greatest advocate. I would have took her to the moon to see her new GI. I would spend every dime we have to make her gut a happy place... But none of that matter because time is all we have. Time and our love for our Kwashi.
Tuesday, March 4, 2014
Rumble From Evey's Belly
The Great Rumble... It's a very common sign of what is to come. Belly rumbles = sleep disturbances, fussy baby, and yucky poop. Yes, I examine my child's bowel movements like an oracle reading tea leaves. They are very telling.
So cauliflower. Two spoonfuls = red cheeks. One teaspoon = skipping naps and screaming until passing out. We pushed her to two teaspoonfuls. We gave her a rest day. Magically, that baby napped and wasn't as fussy.
This reaction was unlike many in the past. None the less she was uncomfortable. Really who wants that. Feeding therapy agreed to not push it or anything new until we see our new GI doctor. Yep, another doctor. Another person to tell her long history to. Another person that will most likely say, "Huh, that's interesting." I have been assured he is good. He treats FPIES and other weird variations.
As much as we haven't made much progress in feeding therapy I will say one thing, THEY BELIEVE ME! They have seen other children, other mothers, other parents struggle with the SAME ISSUES. It is real. I am not crazy. Hopefully in a months time I will have a doctor that will recognize the issue.
There isn't anything he can do. There isn't a magic pill or procedure that will make her tolerate food. For me it is for someone to recognize there is a PROBLEM instead of saying "Hang in there. It will get better." Obliviously it hasn't. Honestly, it has worsened. I don't understand how some of these doctors sleep knowing a family is struggling so hard to feed their child. At the very least REFER the poor saps to some one that might be better suited.
And so another food trial.... well we are not calling it a fail.
So cauliflower. Two spoonfuls = red cheeks. One teaspoon = skipping naps and screaming until passing out. We pushed her to two teaspoonfuls. We gave her a rest day. Magically, that baby napped and wasn't as fussy.
This reaction was unlike many in the past. None the less she was uncomfortable. Really who wants that. Feeding therapy agreed to not push it or anything new until we see our new GI doctor. Yep, another doctor. Another person to tell her long history to. Another person that will most likely say, "Huh, that's interesting." I have been assured he is good. He treats FPIES and other weird variations.
As much as we haven't made much progress in feeding therapy I will say one thing, THEY BELIEVE ME! They have seen other children, other mothers, other parents struggle with the SAME ISSUES. It is real. I am not crazy. Hopefully in a months time I will have a doctor that will recognize the issue.
There isn't anything he can do. There isn't a magic pill or procedure that will make her tolerate food. For me it is for someone to recognize there is a PROBLEM instead of saying "Hang in there. It will get better." Obliviously it hasn't. Honestly, it has worsened. I don't understand how some of these doctors sleep knowing a family is struggling so hard to feed their child. At the very least REFER the poor saps to some one that might be better suited.
And so another food trial.... well we are not calling it a fail.
Friday, February 28, 2014
A Rare Kind Of Day
February 28th is Rare Disease Day. This can be for any rare disease. We know Kwashi is rare. She is our special girl that we love with all our heart.
Hopefully, next month will bring us more answers as to what is going on with her little gi tract. We are confident in saying she does have a form of FPIES (Food Protein Induced Enterocolitis Syndrome). Her Feeding Team supports this, her allergist said she was on the "spectrum" and we have consulted a specialist in Columbus, Ohio who was certain she had a variant. Plus, the wonderful moms and dads in my FPIES support group have shared some much information. It has been eye opening.
I know everyone these days has a cause they want you to support. But today is for the "rare" ones. So wear some comfy jeans. You can still look professional. I know because her daddy came down sporting a pair. Guess he will be a bit more casual rounding today.
Hopefully, next month will bring us more answers as to what is going on with her little gi tract. We are confident in saying she does have a form of FPIES (Food Protein Induced Enterocolitis Syndrome). Her Feeding Team supports this, her allergist said she was on the "spectrum" and we have consulted a specialist in Columbus, Ohio who was certain she had a variant. Plus, the wonderful moms and dads in my FPIES support group have shared some much information. It has been eye opening.
I know everyone these days has a cause they want you to support. But today is for the "rare" ones. So wear some comfy jeans. You can still look professional. I know because her daddy came down sporting a pair. Guess he will be a bit more casual rounding today.
Tuesday, February 25, 2014
You Are A New Mom, It's All In Your Head: Part IV
We were in the hospital for 24 hours. NG was placed. Her doctor had no words of wisdom. He said he had never seen one like her. What is that suppose to mean? There wasn't a plan. Just to get her into feeding therapy that our insurance wouldn't pay for. The waiting list was long, maybe I could work on that. I knew the feeding tube wasn't the answer. 48 hours into using it. She started to vomit. She pulled it once. I placed it again. It was horrible. She fought me. I said enough was enough. If she didn't want to eat I wasn't going to force her. I couldn't hold her down and shove a tube down her. Over her 9 months of life I had to do it a few times. I wasn't willing to do it anymore.
Our baby was trying to tell us something. I tried a couple other foods after the NG. She would just vomit when I would place them in her mouth. Here we were with nothing to feed her, fighting to feed her bottles. On the weight roller coaster. NO MORE SOLIDS, that is what I decided. Gut rest until she was 12 months. Best decision ever. Although she fought us when it came to feeding her she was gaining again.
Around December I was encouraged to try solids again. We trailed beef and cherries with success. White potatoes were a fail. In that time we tried a medication to increase her appetite. It only made her throw tantrums and sleep all the time. It seemed to cause her pain.
At the end of December we held off for a few weeks until we saw the feeding therapy team. OH YES, finally feeding therapy. What a long day that was. They didn't tell us anything we didn't already know. They were in agreement that Kwash had some form of FPIES but now to get a doctor that understood. At therapy we decided to trail pears next.... And we all know how that went.
So that is our journey. We have no answers. We have no safe food. We wonder if her formula is all that safe. I sit here and struggle with all this. There was no fun birthday cake when she turned one. There is not sharing our food with her. There is just us saying NO or taking away foods she finds on the floor out of fear she will react.
Our baby was trying to tell us something. I tried a couple other foods after the NG. She would just vomit when I would place them in her mouth. Here we were with nothing to feed her, fighting to feed her bottles. On the weight roller coaster. NO MORE SOLIDS, that is what I decided. Gut rest until she was 12 months. Best decision ever. Although she fought us when it came to feeding her she was gaining again.
Around December I was encouraged to try solids again. We trailed beef and cherries with success. White potatoes were a fail. In that time we tried a medication to increase her appetite. It only made her throw tantrums and sleep all the time. It seemed to cause her pain.
At the end of December we held off for a few weeks until we saw the feeding therapy team. OH YES, finally feeding therapy. What a long day that was. They didn't tell us anything we didn't already know. They were in agreement that Kwash had some form of FPIES but now to get a doctor that understood. At therapy we decided to trail pears next.... And we all know how that went.
So that is our journey. We have no answers. We have no safe food. We wonder if her formula is all that safe. I sit here and struggle with all this. There was no fun birthday cake when she turned one. There is not sharing our food with her. There is just us saying NO or taking away foods she finds on the floor out of fear she will react.
Monday, February 24, 2014
You Are A New Mom, It's All In Your Head: Part III
By mid march I was defeated. I put the pump up and broke out the Neosure and rice cereal. Thickening my BM wasn't working. I was getting less than an oz per pump. Her first bottle with rice she screamed and broke out in a rash. We had seen a speech therapist to evaluate Kwashi's swallow when she had her swallow test. They gave us a can for Thick'it. I gave that a try. She seemed to take to it better. In a few short days I had a screaming infant pooping 12x a day green/black, smelly, mucus poops. Being a new mom never around babies I didn't know any better. But she was eating and she ate for a solid week. As quickly as she started eating she stopped. Kwashi continued to decline.
April brought on dehydration and complete feeding refusal.We were advised to come into Children's Hospital for evaluation. Upon taking her in and the staff placing an NG tube we noticed how utterly uncomfortable she was while being tube fed. Her doctor told us she just had difficulty swallowing. So if she has trouble swallowing and we are now bypassing that function why is she so uncomfortable? I questioned the staff about her poop, reflux, and her behavior for three days. Nothing was done test wise to figure out her issue. None of the doctors would look at her poop. Interesting enough the nurses, PT/OT, SLP, all said there is something very, very wrong.
We were d/c'ed home, with a NG, with no answers. My mom radar was going crazy. I called another children's hospital and got into a gi doctor that came highly recommended. Our insurance didn't pay for it, I didn't care. So I marched up to the new doctor's office he asked me if anyone had tested her stool. Looking dumfounded I said no. The test to 3 seconds. She tested positive for blood in the stool. He said she likely has MSPI but could not rule out a swallowing issue just yet. The dietician came in we started a plan. Alimentum powder mixed to 26cal/oz. We had the ng to work with. So we were hoping we could find her comfort more quickly. She briefly mentioned plan B and C if the alimentum didn't work. The dietician reassured me she has to rarely go to plan B and just about never went to plan C.
Evelyn's body had a different take on things. Evey's NG stopped working. She ripped it out and I was done with putting it back in. She drank the new formula for a few days. Her stools improved but her mood did not. I was told to give it to her unthickend for two weeks. That it took time. So I stuck with it. But why did she seem to get worse? After day eight I said enough is enough. Let's go to plan B: Alimentum Ready To Feed, a corn free formula that some kids tolerate better. Well, not Evelyn. We finally went to plan C.... Elemental formula., 50 plus dollar a can formula!!! WTF??? She took to it ok. Her poos improved, her mood picked up, feeding her was only kind of a nightmare. She was gaining weight again. We were happy with the improvement and so was her GI doctor.
Fast forward 3 weeks later and the feeding refusal started again. She started pooping more frequently, she started screaming more. I started crying more. The doctor told me "It takes time, sometimes 6 weeks." Ok, but why was she doing ok and now not? He also wanted me to start solids sooner rather than later. I didn't agree but there came a point of desperation in me... Maybe she would take better to solids. She was almost 6 months adjusted. What could it hurt?
Haha, I started giving her bananas. We had a ton in the house. She didn't take to them well. She tried a little here and there. Then one day ate a bunch. The following days brought on visible blood in the stool. Super cranky. No sleep. I consulted the doctor and we all agreed it was time for a scope...
We had the scope and it was.......... NORMAL. I was told to keep trying Elecare. No kids reacts to it. And really start trying the solids. I didn't start the solids. We started thickening her feeds again because after the scope she flat out refused to eat. And oh she ate with the thickened feeds!!! But within a week EXPLOSIVE MUCUS filled poops started again. And we were now starting to slowly put together the puzzle pieces. Her stools tested positive for blood again. We switched to another thickener which causes constipation and more blood. So what was the common link between the two thickeners??? CORN! They were corn based. I asked the doctor about Kwashi possible reacting to the corn in Elecare. I was shot down. My husband and I found a new thicken called GelMix. It pretty much saved us from another NG tube. Kwashi started chowing down on thickened Elecare with GelMix. Her mood improved so much and the blood stopped.
Since we had a "happy" baby, happy for Kwash, I decided to go back to the solids. Next was apple, seemed to go well. Sweet potatoes seemed a win, squash OH YEAH. We seemed on a roll. Kwashi seemed to like the foods. We hit a little snag with carrots. She vomited a bunch on day three. I didn't push those any further. Then "The Great Mango Incidence" occurred. Mangos = Blood in the stool after one bite! Then Kwashi stopped eating her "safe" foods. Started gagging and vomiting when I tried to feed her. She didn't want that food in her belly. No way No how. So here I was with a 8 month old who refused to eat solids and started refusing her bottle AGAIN!!! He doctor just looked confused. I brought up FPIES and his Fellow said... She doesn't vomit...
By September her bottle refusal drove me so mad I opted for the NG again... But at the same time we also changed her formula for a third time. The doctor wasn't too keen on it. I didn't care what he had to say anymore.
April brought on dehydration and complete feeding refusal.We were advised to come into Children's Hospital for evaluation. Upon taking her in and the staff placing an NG tube we noticed how utterly uncomfortable she was while being tube fed. Her doctor told us she just had difficulty swallowing. So if she has trouble swallowing and we are now bypassing that function why is she so uncomfortable? I questioned the staff about her poop, reflux, and her behavior for three days. Nothing was done test wise to figure out her issue. None of the doctors would look at her poop. Interesting enough the nurses, PT/OT, SLP, all said there is something very, very wrong.
We were d/c'ed home, with a NG, with no answers. My mom radar was going crazy. I called another children's hospital and got into a gi doctor that came highly recommended. Our insurance didn't pay for it, I didn't care. So I marched up to the new doctor's office he asked me if anyone had tested her stool. Looking dumfounded I said no. The test to 3 seconds. She tested positive for blood in the stool. He said she likely has MSPI but could not rule out a swallowing issue just yet. The dietician came in we started a plan. Alimentum powder mixed to 26cal/oz. We had the ng to work with. So we were hoping we could find her comfort more quickly. She briefly mentioned plan B and C if the alimentum didn't work. The dietician reassured me she has to rarely go to plan B and just about never went to plan C.
Evelyn's body had a different take on things. Evey's NG stopped working. She ripped it out and I was done with putting it back in. She drank the new formula for a few days. Her stools improved but her mood did not. I was told to give it to her unthickend for two weeks. That it took time. So I stuck with it. But why did she seem to get worse? After day eight I said enough is enough. Let's go to plan B: Alimentum Ready To Feed, a corn free formula that some kids tolerate better. Well, not Evelyn. We finally went to plan C.... Elemental formula., 50 plus dollar a can formula!!! WTF??? She took to it ok. Her poos improved, her mood picked up, feeding her was only kind of a nightmare. She was gaining weight again. We were happy with the improvement and so was her GI doctor.
Fast forward 3 weeks later and the feeding refusal started again. She started pooping more frequently, she started screaming more. I started crying more. The doctor told me "It takes time, sometimes 6 weeks." Ok, but why was she doing ok and now not? He also wanted me to start solids sooner rather than later. I didn't agree but there came a point of desperation in me... Maybe she would take better to solids. She was almost 6 months adjusted. What could it hurt?
Haha, I started giving her bananas. We had a ton in the house. She didn't take to them well. She tried a little here and there. Then one day ate a bunch. The following days brought on visible blood in the stool. Super cranky. No sleep. I consulted the doctor and we all agreed it was time for a scope...
We had the scope and it was.......... NORMAL. I was told to keep trying Elecare. No kids reacts to it. And really start trying the solids. I didn't start the solids. We started thickening her feeds again because after the scope she flat out refused to eat. And oh she ate with the thickened feeds!!! But within a week EXPLOSIVE MUCUS filled poops started again. And we were now starting to slowly put together the puzzle pieces. Her stools tested positive for blood again. We switched to another thickener which causes constipation and more blood. So what was the common link between the two thickeners??? CORN! They were corn based. I asked the doctor about Kwashi possible reacting to the corn in Elecare. I was shot down. My husband and I found a new thicken called GelMix. It pretty much saved us from another NG tube. Kwashi started chowing down on thickened Elecare with GelMix. Her mood improved so much and the blood stopped.
Since we had a "happy" baby, happy for Kwash, I decided to go back to the solids. Next was apple, seemed to go well. Sweet potatoes seemed a win, squash OH YEAH. We seemed on a roll. Kwashi seemed to like the foods. We hit a little snag with carrots. She vomited a bunch on day three. I didn't push those any further. Then "The Great Mango Incidence" occurred. Mangos = Blood in the stool after one bite! Then Kwashi stopped eating her "safe" foods. Started gagging and vomiting when I tried to feed her. She didn't want that food in her belly. No way No how. So here I was with a 8 month old who refused to eat solids and started refusing her bottle AGAIN!!! He doctor just looked confused. I brought up FPIES and his Fellow said... She doesn't vomit...
By September her bottle refusal drove me so mad I opted for the NG again... But at the same time we also changed her formula for a third time. The doctor wasn't too keen on it. I didn't care what he had to say anymore.
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