Greetings to everyone that are probably viewing this because of a Google search about CPT II or through my profile link from another blog. *I'm smiling at you*
We now have three children.
Since the last blog posts nothing major has happened in connection with CPT II.
The only times it has come up:
- recently when we were applying for a health cost sharing group I realized I had no official paperwork proving Sarah doesn't have CPT II so for "Previous Health History" I had to explain our dilemma of CPT II since it is part of her history. Thankfully since she was weaned from all treatment shortly after she was one-years-old, she never showed any symptoms of CPT II.
- at one point in the last few years she complained her legs felt tired. This made warning signs go off in my head because muscle fatigue is a warning sign for carnitine deficiency. Since we never got a definitive medical answer as to whether did or did not have CPT II, I am aware that there is adult onset CPT II and so there is still a lingering haunting of CPT II. As I type this I'm combating anxiety about whether Sarah's lack of desire to ride a bike uphill is based on her personality, mental strength, or exercise intolerance (thus, a sign of CPT II). So CPT II still haunts us.
- when we are reminded how smart Sarah is. This is not intended to brag but is just a reality, Sarah is really smart. She recently took her 3rd grade beginning of year test (BOG) and scored 99%. When we are reminded of her smartness I might make a comment to her father or grandparents, "Thank you, daily levocarnitine supplements for the first year of her life as her brain was forming." Some of us had heard radio commercials advertising L-carnitine supplements to increase memory and brain function so we started joking that was one of the ways Sarah got extra smart as a baby.
Well, there is our update. :-)
If you are at this blog because of a CPT II diagnoses for your child, I found the FOD Family Support Group to be so helpful during our struggle to understand all that is involved with the condition and treatment.
Wednesday, January 4, 2017
Tuesday, August 2, 2011
Baby #2 is Born
Things are different.
The new baby is here. She is just as beautiful as her big sister Sarah.
In the hospital I was very aware when they took our baby away for the newborn screening. It also seemed like the little prick mark from the newborn screening stayed visible for a week or two. We met with her pediartircian 4 days after she was born and he said that if anything was flagged they would call us. No news, was good news. We got no news.
We can let her sleep. She still wakes up every 2-4 hours to eat but at least she is awake to eat. With Sarah, we would try desperately to wake her up every 3 hours to eat and she usually would drink her bottle basically asleep. It makes me think that Sarah would have been one of those newborns that would have slept a good chunk at a time. I keep reminding myself not to think too much about what could've been if we hadn't gone through what we did with Sarah. Both girls are beautiful and healthy, praise God!
The new baby is here. She is just as beautiful as her big sister Sarah.
In the hospital I was very aware when they took our baby away for the newborn screening. It also seemed like the little prick mark from the newborn screening stayed visible for a week or two. We met with her pediartircian 4 days after she was born and he said that if anything was flagged they would call us. No news, was good news. We got no news.
We can let her sleep. She still wakes up every 2-4 hours to eat but at least she is awake to eat. With Sarah, we would try desperately to wake her up every 3 hours to eat and she usually would drink her bottle basically asleep. It makes me think that Sarah would have been one of those newborns that would have slept a good chunk at a time. I keep reminding myself not to think too much about what could've been if we hadn't gone through what we did with Sarah. Both girls are beautiful and healthy, praise God!
Saturday, April 16, 2011
Important Information for Parents
At my last doctor's appointment for our yet-to-be-born child, I received a packet of informative papers and pamphlets. I noticed the booklet "Important Information for Parents about the Newborn Screening Test." I let out a short chuckle as I flipped through it. I don't remember getting this when I was pregnant with Sarah.
Yes, we are still going to have the Newborn Screening done on Poema (that's our new baby girl's name).
Yes, we are still going to have the Newborn Screening done on Poema (that's our new baby girl's name).
Sunday, December 19, 2010
Baby #2
Well friends, we're going on a second adventure. Baby #2 is baking in my baby maker. I am 16 weeks pregnant. Through Kaiser they said I qualified for more prenatal appointments based on my initial phone interview after conceiving. I had a feeling it was in regards to genetics. I was right. I have already had a genetic appointment but since there is no way to formally confirm or deny that Sarah has CPT II, we do not know if we are carriers or if the second child could have CPT II. Basically all the genetic doctor did was add the information about possible CPT II onto my chart because the only mention was in Sarah's medical records. She also requested 3 extra blood tests to be done throughout my pregnancy to check my liver because she said HELP Syndrome is possibly connected with women carrying babies with CPT. I wasn't able to find any proof of this connection during my little Google search but I figured a few extra blood tests won't hurt.
I'm going into this pregnancy way more grounded in the reality that anything can happen. I have no control over what happens with this little life inside me (Ok, I can take vitamins and not eat junk but, ultimately, there is no control). This understanding has made me less fearful. I'm just letting it go and we'll see what happens.
I'm going into this pregnancy way more grounded in the reality that anything can happen. I have no control over what happens with this little life inside me (Ok, I can take vitamins and not eat junk but, ultimately, there is no control). This understanding has made me less fearful. I'm just letting it go and we'll see what happens.
Tuesday, August 17, 2010
A Can of Worms
Sarah turned 2 in July. Her last blood test was about a month or two after her first birthday.
Jonathan and I have discussed that we should call the metabolic clinic and get a blood test done on Sarah to see what it shows about her carnitine levels.
We decided a few weeks ago.
I don't really want to.
That's why I haven't.
I'm afraid to start this drama again, the unknown and no way of really knowing.
What's the saying? What you don't know, won't kill you.
Could it kill my kid though?
Ok. I guess I'll call.
Jonathan and I have discussed that we should call the metabolic clinic and get a blood test done on Sarah to see what it shows about her carnitine levels.
We decided a few weeks ago.
I don't really want to.
That's why I haven't.
I'm afraid to start this drama again, the unknown and no way of really knowing.
What's the saying? What you don't know, won't kill you.
Could it kill my kid though?
Ok. I guess I'll call.
Monday, November 23, 2009
Thankful
Well, I can now honestly say that I am thankful for how I developed as a person and mother because of our whole journey with Sarah's NBS and CPT II scare. It didn't seem to hinder or harm Sarah in any way. I didn't enjoy the extra worries and less sleep that occured. I wouldn't wish this journey upon anyone, but I am thankful for how much stronger it has made my faith and the bond between my husband and me.
Wednesday, October 14, 2009
Sarah is Smart (this isn't meant in a bragging way)
A few nights ago, as I was praying over Sarah, I realized one of my deep fears through all of the whole CPT II possibility and treatment. My fear was that she wouldn't develop properly because she wasn't getting the fats she needed. Basically, I was afraid that she wouldn't be as smart as she could be or that her brain wouldn't develop correctly. (That's why I was trying to find ways to be allowed to feed her avocado. That was me trying to control things.)
During our night night routine prayer, I was thanking God for how smart Sarah is and for the joy she brings to our lives and I was overcome with emotion as I realized that God had answered my prayers. My prayer was that God would keep her safe while we treated her and that she would develop normally.
Trust in the Lord with all your heart and lean not on your own understanding, in all your ways acknowledge Him, and He will make your paths straight. Proverbs 3:5-6
During our night night routine prayer, I was thanking God for how smart Sarah is and for the joy she brings to our lives and I was overcome with emotion as I realized that God had answered my prayers. My prayer was that God would keep her safe while we treated her and that she would develop normally.
Trust in the Lord with all your heart and lean not on your own understanding, in all your ways acknowledge Him, and He will make your paths straight. Proverbs 3:5-6
Sunday, September 13, 2009
Breastfeeding
The time has come to wean Sarah off breastfeeding. This is actually rather abrupt due to the requirement of myself needing to start medication to kill tuberculosis (it's currently dormant so I'm not contageous). Jonathan reminded me of some of the breasfeeding ups and downs we've had during these last 13 months or so. I realized I hadn't documented any of my breastfeeding woes and successes.
I did mention that after Sarah was born she seemed to latch on fine but that due to jaundice there were expectations that Sarah would feed often and quickly and she just didn't seem to want to be on that schedule. During our stay in the hospital the three days after she was born my focus was feeding Sarah. She was in the NICU so I was unable to practice changing her diapers, putting her to sleep, soothing her when/if she was upset, etc.
When we brought Sarah home, that first night was long (it's embarassingly comical now). I was basically irrational and super paranoid of harming her. Everytime I tried to put her down while she was sleeping, she would wake up. I ended up sitting in our recliner holding her the whole night. I wouldn't let myself go to sleep because of all the warnings that you could smother/kill your child if you sleep with them. I realized that in the NICU I never got to practice swaddling her and putting her to sleep because the nurses did that. Sarah always seemed more than willing to sleep in her little warming bed in the NICU. I decided that because I was having no luck putting her down to sleep I would just stay awake until the morning while holding my sleeping baby and then I would have my in-laws watch her while I slept. During this time the easiest thing was the breastfeeding. My milk seemed to have come in and I realized this was the only thing I practiced while in the hospital with her.
When she was a few weeks old, the metabolic doctors basically said my breastmilk contains the fat that could (in layman's terms) poison her cells and cause her to stop functoning and die if she has the disorder that she was flagged as possbly having by the NBS. I was told to stop breastfeeding and feed her the elixir. The elixir included some long-chain fats because the human brain requires it for development. Instead of using formula in the elixir I pumped, or expressed, my milk so as to keep my milk supply flowing because I was determined to breastfeed and I wanted to be able to still breastfeed if Sarah's NBS was a false-positive. I stored up lots of breastmilk in those days. Our freezer was stuffed with breastmilk (an overstatement, but it felt that way when the occasional solid bag of breastmilk would fall out on us when we opened the freezer door).
I did mention that after Sarah was born she seemed to latch on fine but that due to jaundice there were expectations that Sarah would feed often and quickly and she just didn't seem to want to be on that schedule. During our stay in the hospital the three days after she was born my focus was feeding Sarah. She was in the NICU so I was unable to practice changing her diapers, putting her to sleep, soothing her when/if she was upset, etc.
When we brought Sarah home, that first night was long (it's embarassingly comical now). I was basically irrational and super paranoid of harming her. Everytime I tried to put her down while she was sleeping, she would wake up. I ended up sitting in our recliner holding her the whole night. I wouldn't let myself go to sleep because of all the warnings that you could smother/kill your child if you sleep with them. I realized that in the NICU I never got to practice swaddling her and putting her to sleep because the nurses did that. Sarah always seemed more than willing to sleep in her little warming bed in the NICU. I decided that because I was having no luck putting her down to sleep I would just stay awake until the morning while holding my sleeping baby and then I would have my in-laws watch her while I slept. During this time the easiest thing was the breastfeeding. My milk seemed to have come in and I realized this was the only thing I practiced while in the hospital with her.
When she was a few weeks old, the metabolic doctors basically said my breastmilk contains the fat that could (in layman's terms) poison her cells and cause her to stop functoning and die if she has the disorder that she was flagged as possbly having by the NBS. I was told to stop breastfeeding and feed her the elixir. The elixir included some long-chain fats because the human brain requires it for development. Instead of using formula in the elixir I pumped, or expressed, my milk so as to keep my milk supply flowing because I was determined to breastfeed and I wanted to be able to still breastfeed if Sarah's NBS was a false-positive. I stored up lots of breastmilk in those days. Our freezer was stuffed with breastmilk (an overstatement, but it felt that way when the occasional solid bag of breastmilk would fall out on us when we opened the freezer door).
It was during this time that I had some emotional breakdowns because at that point breastfeeding was my most confident area of parenting. That was the thing I had down, and I felt like I was being robbed of it. I remember in particular watching the "First 5" video on basic infant care that was given to us when we left the hospital. Phylicia Rashad (the mom from the Cosby show) was on the video talking about the benefits of breastfeeding and how breastmilk was the best thing for your baby - I broke down because of the thought that my breastmilk could kill Sarah and it wasn't the best thing for her.
There was another time when Sarah was upset and I knew that breastfeeding her would calm her down, but I knew that I wasn't supposed to. It was during the time when I was supposed to alternate between breastfeeding and bottle feeding her elixir. I can't remember exactly what the issue was but I was extremely upset and it ended with Jonathan just talking me into breastfeeding Sarah and it calmed both of us, Sarah and me, down. I think it had to do with me once again fearing that by breastfeeding her, it could kill her, but feeling that breastfeeding was exactly what I was supposed to be doing.
Due to the requirement that Sarah needed to eat every three hours and, later in her first year of life, every five hours, there were some stressful experiences when she just wasn't wanting to eat and so I would fight with her to eat. The "fighting" looked like me basically trying to get my boob in her mouth and coaxing her to suck all the while she is flailing her limbs and turning her head away from the food source. Those times usually ended with me giving up and figuring that she had enough energy to survive a little bit longer and I would just be aware that at the first sign of hunger she needed to be fed. There were other times when she would bite me and so the breastfeeding session would end prematurely in order to teach her that biting her food source was unacceptable.
Through many of these situations I learned the importance of handing over my anxiety to God and asking for peace unless I needed to be worried. My trust in God increased greatly during this time. I learned that I had little control.
Our last breastfeeding sessions took place after Jonathan and I confidently felt that Sarah didn't have CPT II so I was feeding on demand (as opposed to scheduled feedings). The last two days included about 4-6 relaxing and beautiful times of breastfeeding. Our routine included Sarah twirling my hair in her fingers while we looked at each other, and often she would fall asleep. I've heard some people talk about breastfeeding as though they LOVED it and found it extremely spiritual, I am not one of those people but I enjoyed that it was something special that Sarah and I shared together and it connected us.
There was another time when Sarah was upset and I knew that breastfeeding her would calm her down, but I knew that I wasn't supposed to. It was during the time when I was supposed to alternate between breastfeeding and bottle feeding her elixir. I can't remember exactly what the issue was but I was extremely upset and it ended with Jonathan just talking me into breastfeeding Sarah and it calmed both of us, Sarah and me, down. I think it had to do with me once again fearing that by breastfeeding her, it could kill her, but feeling that breastfeeding was exactly what I was supposed to be doing.
Due to the requirement that Sarah needed to eat every three hours and, later in her first year of life, every five hours, there were some stressful experiences when she just wasn't wanting to eat and so I would fight with her to eat. The "fighting" looked like me basically trying to get my boob in her mouth and coaxing her to suck all the while she is flailing her limbs and turning her head away from the food source. Those times usually ended with me giving up and figuring that she had enough energy to survive a little bit longer and I would just be aware that at the first sign of hunger she needed to be fed. There were other times when she would bite me and so the breastfeeding session would end prematurely in order to teach her that biting her food source was unacceptable.
Through many of these situations I learned the importance of handing over my anxiety to God and asking for peace unless I needed to be worried. My trust in God increased greatly during this time. I learned that I had little control.
Our last breastfeeding sessions took place after Jonathan and I confidently felt that Sarah didn't have CPT II so I was feeding on demand (as opposed to scheduled feedings). The last two days included about 4-6 relaxing and beautiful times of breastfeeding. Our routine included Sarah twirling my hair in her fingers while we looked at each other, and often she would fall asleep. I've heard some people talk about breastfeeding as though they LOVED it and found it extremely spiritual, I am not one of those people but I enjoyed that it was something special that Sarah and I shared together and it connected us.
What's Different Now?
The process of taking Sarah off treatment has been easy in some ways and in other ways it required adjusting our schedule.
Allowing her to sleep through the night has influenced the time she wakes up and her nap schedule. When I would feed her during the night, she would usually sleep-drink her 2am bottle and 7am bottle and then sleep until 9 or 9:30am. Now she is waking anytime between 6:30 and 8:30am. She is also taking two longer naps during the day.
Stopping the carnitine was easy. Sarah quite enjoyed the carnitine as she got older. She was a pro at taking it with her bottles. I regret not documenting it on video. I did try to take some pictures of her one day when she was sucking on her carnitine syringe.
I've noticed her urine smells differently now. I always thought her urine smelled weird, not fishy like some people complain of when they are taking carnitine supplements but it was distinct. Now it smells less distinct.
She seems to be adjusting fine to the whole milk mixed with her Lipistart. At first she was drinking less of her bottles but now she is drinking as much as usual.
Allowing her to sleep through the night has influenced the time she wakes up and her nap schedule. When I would feed her during the night, she would usually sleep-drink her 2am bottle and 7am bottle and then sleep until 9 or 9:30am. Now she is waking anytime between 6:30 and 8:30am. She is also taking two longer naps during the day.
Stopping the carnitine was easy. Sarah quite enjoyed the carnitine as she got older. She was a pro at taking it with her bottles. I regret not documenting it on video. I did try to take some pictures of her one day when she was sucking on her carnitine syringe.
I've noticed her urine smells differently now. I always thought her urine smelled weird, not fishy like some people complain of when they are taking carnitine supplements but it was distinct. Now it smells less distinct.
She seems to be adjusting fine to the whole milk mixed with her Lipistart. At first she was drinking less of her bottles but now she is drinking as much as usual.
Take Care of Ourselves Also
During all this time of caring and focusing on Sarah, we (my husband and I) apparently were unaware of our own health issues.
According to a doctor, my chest x-ray showed that I had tuberculosis (TB). It's dormant now but I had it in the past. Considering I was a teacher before having Sarah, I got TB tests every few years. Four years ago, my TB test was negative. So, within the last four years, I had TB. I don't remember ever being very ill in those last 4 years. The other weird thing is that none of my family members that have been tested have/had it. Sarah and Jonathan tested negative. I am confused as to how I could have TB and Jonathan didn't get it, but I am taking the medication for the next nine months even though it doesn't make sense.
Jonathan apparently has some kidney issues that the doctors can't figure out as of right now.
Family and friends have joked that we were so focused on caring for Sarah that we forgot to take care of ourselves.
One thing all of this has confirmed is to never go into a doctor's appointment thinking everything is OK. Go into appointments knowing anything is possible, hopefully it's OK.
According to a doctor, my chest x-ray showed that I had tuberculosis (TB). It's dormant now but I had it in the past. Considering I was a teacher before having Sarah, I got TB tests every few years. Four years ago, my TB test was negative. So, within the last four years, I had TB. I don't remember ever being very ill in those last 4 years. The other weird thing is that none of my family members that have been tested have/had it. Sarah and Jonathan tested negative. I am confused as to how I could have TB and Jonathan didn't get it, but I am taking the medication for the next nine months even though it doesn't make sense.
Jonathan apparently has some kidney issues that the doctors can't figure out as of right now.
Family and friends have joked that we were so focused on caring for Sarah that we forgot to take care of ourselves.
One thing all of this has confirmed is to never go into a doctor's appointment thinking everything is OK. Go into appointments knowing anything is possible, hopefully it's OK.
One Month of "Normalness"
Well, we have survived more than one month of "normalness" and Sarah seems fine. We decided that the falling asleep during lunch was normal because she hadn't napped yet and she woke up fine. We also suspect that she might be teething.
I recieved a call from the metabolic clinic that Sarah's first carnitine blood test, taken a month after we stopped giving her carnitine suplements, started letting her sleep through the night and feeding her whole milk, showed her carnitine levels were in the normal range. This is a very good evidence.
We are still awaiting her enzyme assay results.
I recieved a call from the metabolic clinic that Sarah's first carnitine blood test, taken a month after we stopped giving her carnitine suplements, started letting her sleep through the night and feeding her whole milk, showed her carnitine levels were in the normal range. This is a very good evidence.
We are still awaiting her enzyme assay results.
Monday, August 31, 2009
Seed of Doubt
The last two days Sarah has fallen asleep during lunch. I know this happens sometimes, I remember a pic of me asleep in my spaghetti. I didn't think much about it except that maybe I need to start feeding her earlier so she is ready to nap when she has been getting tired lately. Then my wise husband pointed out that we should be aware of the possible connection between her being really sleepy at this time and CPT II. A friend of ours was eating with us and said he was wondering if there was a connection between the two also.
Is this lethargy or normal sleepy?
Ah man . . . this started the whole process of trying to be aware but not worry about it. The whole time she slept uninterrupted (we cleaned her up, put clothes on her, transported her to a birthday party where she continued to sleep) I could feel myself dreading the possible need to rush her to the hospital. She woke up happy, normal, and well rested. She proceeded to enjoy the rest of the birthday party (it turns out Sarah and the birthday girl both woke at about the same time so no festivities were missed).
We'll see tomorrow if she falls asleep during lunchtime.
Is this lethargy or normal sleepy?
Ah man . . . this started the whole process of trying to be aware but not worry about it. The whole time she slept uninterrupted (we cleaned her up, put clothes on her, transported her to a birthday party where she continued to sleep) I could feel myself dreading the possible need to rush her to the hospital. She woke up happy, normal, and well rested. She proceeded to enjoy the rest of the birthday party (it turns out Sarah and the birthday girl both woke at about the same time so no festivities were missed).
We'll see tomorrow if she falls asleep during lunchtime.
Saturday, August 29, 2009
Doin' Fine
Sarah is doing just fine. We haven't seen any signs that she may have CPT II (this doesn't mean she doesn't have it, because kids can seem fine yet still have it - I say this just to keep myself in reality). She has been sleeping most of the night and waking up happy.
Today she signed that she wanted to eat please and I walked with her to the fridge and asked her what she wanted to eat. She pointed to the 2% milk grated cheese and got excited. I let her have some. We haven't really ever given her much grated cheese before. It was fun to give her what she asked for and not feel like I might be doing something detrimental to her.
Sometime in the next week or so we will need to go in to the lab to get Some of Sarah's blood drawn to check her carnitine levels to make sure they are in the normal range still.
Praise God for this time and that Sarah is healthy.
Today she signed that she wanted to eat please and I walked with her to the fridge and asked her what she wanted to eat. She pointed to the 2% milk grated cheese and got excited. I let her have some. We haven't really ever given her much grated cheese before. It was fun to give her what she asked for and not feel like I might be doing something detrimental to her.
Sometime in the next week or so we will need to go in to the lab to get Some of Sarah's blood drawn to check her carnitine levels to make sure they are in the normal range still.
Praise God for this time and that Sarah is healthy.
Monday, August 24, 2009
THE PRESIDENT'S COUNCIL ON BIOETHICS
THE CHANGING MORAL FOCUS OF NEWBORN SCREENING: AN ETHICAL ANALYSIS BY THE PRESIDENT'S COUNCIL ON BIOETHICS
The President's Council on BioethicsWashington, D.C., December 2008
This was a very interesting read considering the situation we found ourselves in with the birth of Sarah, her Newborn Screening results, and the whirlwind of emotions, biochemistry, and medical interventions that occured following the revelation of her results.
The President's Council on BioethicsWashington, D.C., December 2008
This was a very interesting read considering the situation we found ourselves in with the birth of Sarah, her Newborn Screening results, and the whirlwind of emotions, biochemistry, and medical interventions that occured following the revelation of her results.
Thursday, August 20, 2009
Evidence Proving What We Have Thought All Along
This post is long overdo:
We have been gathering evidence (mentally and on paper when we can) to confirm or refute that Sarah has CPT II.
We went to the metabolic doctor at the end of July and the doctor said that she had reviewed all of Sarah's test results and restated our thoughts that we have had since this ordeal started. Her first 3 blood tests were borderline and all following tests, DNA and blood, returned normal. So she brought up the ideas of letting Sarah sleep through the night, stop giving her carnitine, and wean whole milk into her diet. Basically, start treating her like a "normal" child and see how she reacts. Sarah got blood drawn that day for an enzyme assay and we are still awaiting those results. She will be getting blood drawn at the end of this month and the next to test her carnitine levels to see if they are remaining in the "normal" zone.
Sarah is now sleeping through the night and waking up active and cheerful when we get her out of her crib when she awakes. We are still trying to keep her diet low fat for now but we have let her try some new things (without feeling guilty) like hamburger, hot dog, and some food when we are at restaurants. She seems like a normal kid. No behavioral or physical differences.
Praise God!!!!!!!!!!
Then, on Aug. 4th, I received an email from a research study that I had sent some of Sarah's blood to. This email said that based on their research study tests (blood and full DNA screening) it looks that Sarah doesn't have CPT II. There were disclaimers warning that diagnostic testing should be done outside of this research study, but still, it is more evidence proving what we have thought all along.
Praise God!!!!!!!!!!
We are curious what the upcoming test results will show and how it might affect our situation. But for now, we are enjoying this time.
We have been gathering evidence (mentally and on paper when we can) to confirm or refute that Sarah has CPT II.
We went to the metabolic doctor at the end of July and the doctor said that she had reviewed all of Sarah's test results and restated our thoughts that we have had since this ordeal started. Her first 3 blood tests were borderline and all following tests, DNA and blood, returned normal. So she brought up the ideas of letting Sarah sleep through the night, stop giving her carnitine, and wean whole milk into her diet. Basically, start treating her like a "normal" child and see how she reacts. Sarah got blood drawn that day for an enzyme assay and we are still awaiting those results. She will be getting blood drawn at the end of this month and the next to test her carnitine levels to see if they are remaining in the "normal" zone.
Sarah is now sleeping through the night and waking up active and cheerful when we get her out of her crib when she awakes. We are still trying to keep her diet low fat for now but we have let her try some new things (without feeling guilty) like hamburger, hot dog, and some food when we are at restaurants. She seems like a normal kid. No behavioral or physical differences.
Praise God!!!!!!!!!!
Then, on Aug. 4th, I received an email from a research study that I had sent some of Sarah's blood to. This email said that based on their research study tests (blood and full DNA screening) it looks that Sarah doesn't have CPT II. There were disclaimers warning that diagnostic testing should be done outside of this research study, but still, it is more evidence proving what we have thought all along.
Praise God!!!!!!!!!!
We are curious what the upcoming test results will show and how it might affect our situation. But for now, we are enjoying this time.
Where is God in All of This?
This possible CPT II situation has been an extra challenge to figure out on top of being a first-time parent. I knew becoming a parent would test my faith. I didn't really expect how deeply it would cause me to question my faith. Yet through every step of the way, through all my questioning, there has been a steady peace.
- How does our situation bring God glory?
- "Will you still love me even when things are not what you expect? Will you still trust me?" - God
- Is God still good even when things are more difficult than you expected?
- Psalm 139:13-14, "For You formed my inward parts; You wove me in my mother's womb. I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well."
How come some babies are created with bodies that cannot properly process the food that was created to sustain them?
"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God." Philippians 4:6
What have I learned through all of this?
My prayers before Sarah was born were often involving giving Sarah over to God and that she would be His child. We asked that God would give us strength and understanding to raise her up to be a woman of God and become the best that she could be. I tend to be a pretty cautious person and a big fear of mine is that I will do something, or not do something, and harm will come from it. With the threat of Sarah having CPT II, it became very evident that I have very little control and that Sarah is God's child given to us to care for while she is here on earth with us. Something could be going wrong internally (and can with any child, CPT II or not, but it just seemed more likely) and we would not know. I learned to trust God more and give Him my anxieties because they were pointless and out of my control. Sarah is just going to live and we will do our best to care for her with whatever needs arise and not stress over things that are out of our control. In this, I have found freedom.
Blessed Be Your Name by Tree63
Blessed be your name
In the land that is plentiful
Where the streams of abundance flow
Blessed be your name
Blessed be your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed be your name
Every blessing you pour out, I turn back to praise
When the darkness closes in, Lord
Still I will say...Blessed be the name of the Lord
Blessed be your name
Blessed be the name of the Lord
Blessed be your glorious name
Blessed be your name
When the sun's shining down on me
When the world's all as it should be
Blessed be your name
Blessed be your name
On the road marked with suffering
Though there's pain in the offering
Blessed be your name
Every blessing you pour out, I turn back to praise
When the darkness closes in, Lord
Still I will say...Blessed be the name of the Lord
Blessed be your name
Blessed be the name of the Lord
Blessed be your glorious name You give and take away
You give and take away
My heart will choose to say
Lord, Blessed be your name
Fool for You by Nicole Nordeman
There are times when faith and common sense do not align
When hard-core evidence of You is hard to find
And I am silenced in the face of argumentative debate
And it's a long hill, it's a lonely climb
'Cause they want proof
They want proof of all these mysteries I claim
'Cause only fools would want to chant a dead man's name
Maybe it's true
But I would be a fool for You
All because You asked me to
A simpleton who's seemingly naive
I do believe You cam and made Yourself a fool for me
I admit that in my darkest hours I've asked, "What if?"
What if we created some kind of man-made faith like this?
Out of good intention or emotional invention
And after life is through, there will be no You
'Cause they want proof of all these miracle I claim
'Cause only fools believe that men can walk on waves
Maybe it's true
Unaware of popularity
Unconcerned with dignity
You made me free
That's proof enough for me
I would be a fool for You
Only if You asked me to
A simpleton who's only thinking of the cause of love
I will speak Jesus' name
And if that makes me crazy, they can call me crazed
I'm happy to be seemingly naive
I do believe You came and made Yourself a fool for me
Saturday, June 13, 2009
Response to Our Ethical Quandary
On the Facebook Newborn Screening Awareness group, Brandi made a statement in her reply to our ethical quandary. She said, "a certain percent of false positives are a lot better than one child sufffering a crisis or losing their precious little life." I received a similar response from someone at Savebabies.org.
I have not been thinking of the sacraficial aspect in our situation. If Sarah doesn't have CPT II, then our experience was caused by what level is used to identify babies that are at-risk. If the levels were not set so cautiously, a baby that really has CPT II may not be flagged by the NBS and something bad may happen. In order for many to be saved, a few may sacrifice. (I said "many" because the Expanded Newborn Screening can screen for 50 different genetic disorders. CPT II is very rare.)
The amount of suffering that the NBS prevents outweighs the stress and suffering caused by false positives and maybe/maybe-nots like us. When I'm having my moments of sadness for Sarah and frustration, the sacrifice-for-the-good-of-all-mindset will help me cope.
I have not been thinking of the sacraficial aspect in our situation. If Sarah doesn't have CPT II, then our experience was caused by what level is used to identify babies that are at-risk. If the levels were not set so cautiously, a baby that really has CPT II may not be flagged by the NBS and something bad may happen. In order for many to be saved, a few may sacrifice. (I said "many" because the Expanded Newborn Screening can screen for 50 different genetic disorders. CPT II is very rare.)
The amount of suffering that the NBS prevents outweighs the stress and suffering caused by false positives and maybe/maybe-nots like us. When I'm having my moments of sadness for Sarah and frustration, the sacrifice-for-the-good-of-all-mindset will help me cope.
Thursday, June 4, 2009
Sarah Ate Avocado
Avocado is supposed to be a good fat for baby brain development. I haven't been giving Sarah avocado because I know it is basically all fat. The dietician said that Sarah can have 27g of total fat a day.
According to NutritionData.com, a 1 ounce (28g) serving of avocado contains 4g of total fat. I let Sarah eat avocado and I didn't feel guilty about it :~).
According to NutritionData.com, a 1 ounce (28g) serving of avocado contains 4g of total fat. I let Sarah eat avocado and I didn't feel guilty about it :~).
Saturday, May 30, 2009
Newborn Screening - Our Ethical Quandary
I have felt that I should share our story on some Newborn Screening sites. This is my rough draft. Do you see anything that should be edited, reworded, or seems inaccurate?
Preface: We have only met one other couple, and they are also from California, who found themselves in a similar situation involving the NBS. I am not against the NBS, because I know it has saved lives, but there are days that I hate the NBS and it gets the blame of my stress and grieving.
In July of 2008, Sarah, our first and, so far, only child, was born. Within 8 hours of her birth, she was jaundice. We were able to take her home three days later. Two days after that (5 days after she was born), we took her to the pediatrician for her general newborn checkup and to see about her jaundice.
When the pediatrician inspected Sarah, he explained that Sarah seemed to be thriving and showed no evident signs that we should be worried. He, then, informed us that while we were in the waiting room, people from the state of California were on the phone and, in his words, yelling at the receptionist because they were unable to inform them of Sarah's status. He explained that Sarah's Newborn Screening flagged her as possibly having one of two metabolic disorders. He left us in the examination room while he contacted them again and went to get us all the information needed for the next step.
The pediatrician tried to find a lab that had experience drawing blood from a newborn. The next day, we got Sarah's blood drawn from her arm. It seemed like so much blood from such a small baby.
The metabolic clinic from our local children's hospital called and informed us that the blood tests were just barely elevated and these were often false/positives. To play it safe, they had us wake Sarah every three hours to feed and started her on carnitine three times a day.
During the time between her pediatrician's appointment and her metabolic appointment, we received some pamphlets in the mail. One of the pamphlets stated, "If a disease is not identified and treated quickly, mental retardation and other serious health problems can occur." This is true and was of no comfort as we waited for our appointment.
2 weeks and 6 days after Sarah's birth we had our first appointment with the metabolic clinic. Based on the 2nd blood test, they narrowed her possible disorder down to CPT II (carnitine palmitoyltransferase 2 deficiency). They did a heel prick blood test in the office and then about an hour after Sarah got more blood drawn at a lab. All of this was done after Sarah had been fasting and I hadn't given her carnitine since the night before about 13-15 hours prior to the blood draws. The heel prick test showed elevated levels and the test from the arm (done second) came back normal. All blood tests since have come back normal.
The doctor has said that the tests should be coming back normal because we are treating her. Her DNA showed no visible mutations and only one heterozygous polymorphism that is not known to cause CPT II. She has shown no physical symptoms of CPT II. At this point, there is apparently no test that will prove that she has or does not have CPT II. Herein lies our ethical quandary, we must play the odds.
Our choices now are:
In summary, the newborn screening may have been beneficial because we are treating Sarah like she has CPT II and, praise God, nothing bad has happened, or the newborn screening may have been the cause of a lot of unnecessary stress, doctors' appointments, and unneeded treatment. At this point, there is no way of knowing which is true. It is our prayer that we find evidence confirming or refuting whether Sarah has CPT II so we can live in that truth and enjoy the freedom involved in knowing.
Preface: We have only met one other couple, and they are also from California, who found themselves in a similar situation involving the NBS. I am not against the NBS, because I know it has saved lives, but there are days that I hate the NBS and it gets the blame of my stress and grieving.
In July of 2008, Sarah, our first and, so far, only child, was born. Within 8 hours of her birth, she was jaundice. We were able to take her home three days later. Two days after that (5 days after she was born), we took her to the pediatrician for her general newborn checkup and to see about her jaundice.
When the pediatrician inspected Sarah, he explained that Sarah seemed to be thriving and showed no evident signs that we should be worried. He, then, informed us that while we were in the waiting room, people from the state of California were on the phone and, in his words, yelling at the receptionist because they were unable to inform them of Sarah's status. He explained that Sarah's Newborn Screening flagged her as possibly having one of two metabolic disorders. He left us in the examination room while he contacted them again and went to get us all the information needed for the next step.
The pediatrician tried to find a lab that had experience drawing blood from a newborn. The next day, we got Sarah's blood drawn from her arm. It seemed like so much blood from such a small baby.
The metabolic clinic from our local children's hospital called and informed us that the blood tests were just barely elevated and these were often false/positives. To play it safe, they had us wake Sarah every three hours to feed and started her on carnitine three times a day.
During the time between her pediatrician's appointment and her metabolic appointment, we received some pamphlets in the mail. One of the pamphlets stated, "If a disease is not identified and treated quickly, mental retardation and other serious health problems can occur." This is true and was of no comfort as we waited for our appointment.
2 weeks and 6 days after Sarah's birth we had our first appointment with the metabolic clinic. Based on the 2nd blood test, they narrowed her possible disorder down to CPT II (carnitine palmitoyltransferase 2 deficiency). They did a heel prick blood test in the office and then about an hour after Sarah got more blood drawn at a lab. All of this was done after Sarah had been fasting and I hadn't given her carnitine since the night before about 13-15 hours prior to the blood draws. The heel prick test showed elevated levels and the test from the arm (done second) came back normal. All blood tests since have come back normal.
The doctor has said that the tests should be coming back normal because we are treating her. Her DNA showed no visible mutations and only one heterozygous polymorphism that is not known to cause CPT II. She has shown no physical symptoms of CPT II. At this point, there is apparently no test that will prove that she has or does not have CPT II. Herein lies our ethical quandary, we must play the odds.
Our choices now are:
- Treat Sarah like she has CPT II for fear of the possible chance that the Newborn Screening correctly identified her. The daily treatment of CPT II, compared to what others must deal with to care for their children with disorders, deficiencies, or even allergies, is nothing worthy of complaint. The part I dread is if Sarah gets an sickness/infection or refuses to eat for a certain amount of time, we must rush her to the hospital for IVs. I dread this because if Sarah doesn't have CPT II all of that is completely unnecessary.
- Treat Sarah as though she doesn't have CPT II, as though she were an average child with no need for medical intervention. We have decided that this choice actually has the possibility of more fear because of the harm that could incur because of not treating her. Some benefits if she really doesn't have CPT II, she can: sleep through the night, occasionally enjoy fatty treats (ice cream, avocado, birthday cake), not take carnitine, and not live the life of someone with a genetic disorder if she doesn't really need to.
In summary, the newborn screening may have been beneficial because we are treating Sarah like she has CPT II and, praise God, nothing bad has happened, or the newborn screening may have been the cause of a lot of unnecessary stress, doctors' appointments, and unneeded treatment. At this point, there is no way of knowing which is true. It is our prayer that we find evidence confirming or refuting whether Sarah has CPT II so we can live in that truth and enjoy the freedom involved in knowing.
Monday, May 25, 2009
MCT Oil and Plastic
November 2008
When we were told how to make the Elixir mixture the dietitian mentioned that the MCT oil breaks down plastic so we would need to dispose of the plastic syringes after a while of using them to squirt the MCT oil into the Elixir mixture. I asked about what type of container we needed to store the mixture in during the 24 hours it is allowed to sit in the refrigerator. She said for that amount of time a plastic container would be fine. So for about three months we were storing the prepared elixir in plastic containers in the fridge and then using plastic bottles to feed Sarah. From our understanding, according to the dietitian all of this was allowable.
At a certain point people on the FOD online support group were discussing thermoses and what kinds of liquid with MCT oil could be stored in for their child to take to school. I commented about what our dietitian had told us. Someone politely pointed out that because the MCT oil can break down plastic that they didn't think it was safe to store it in plastic at all. This got me questioning whether the dietitian had instructed us correctly.
I decided to contact Nestle (the maker of our MCT oil) directly and ask them what was acceptable. This was their response:
"Lisa, Thank you for your e-mail. The MCT® Oil and formula mixture needs to be stored in glass and fed with non plastic utensils such as a glass bottle. In regards to storing the product in a thermos check with the manufacturer of the thermos as some are stainless steel on the outside but have a different material on the inside. The MCT® Oil and formula mixture needs to be held under refrigeration in accordance with the time limit (24 hrs) as specified by your dietitian. Best wishes from your friends at Nestlé Healthcare Nutrition."
My reaction that I posted on the support group on November 10th, 2008: "Now I'm off to the store to buy glass bottles and containers. I wish I would have clarified this 3 months ago. I'm not even going dwell on the possible damage done to my daughter. And I forgive the dietitian for telling me the wrong information but I think I will call and nicely inform her that, according to the manufacturer, she is telling patients the wrong information."
We ended up needing to stop using all the plastic bottles we had purchased (which were the same Medela [read as "not cheap"] bottles used with the breast pump). Luckily the only glass bottle I could find without plastic parts inside the bottle were Evenflo Classic and you could get a 3 pack for just over $5. If only we had known . . . ah, the money we could have saved [sigh].
Because of our insurance switch, we no longer had the same dietitian. This experience helped to remind me that medical professionals are just people and they don't have all the answers. It's important to check information with the manufacturers. If I have any questions now about things I am giving to Sarah, I call the manufacturers.
When we were told how to make the Elixir mixture the dietitian mentioned that the MCT oil breaks down plastic so we would need to dispose of the plastic syringes after a while of using them to squirt the MCT oil into the Elixir mixture. I asked about what type of container we needed to store the mixture in during the 24 hours it is allowed to sit in the refrigerator. She said for that amount of time a plastic container would be fine. So for about three months we were storing the prepared elixir in plastic containers in the fridge and then using plastic bottles to feed Sarah. From our understanding, according to the dietitian all of this was allowable.
At a certain point people on the FOD online support group were discussing thermoses and what kinds of liquid with MCT oil could be stored in for their child to take to school. I commented about what our dietitian had told us. Someone politely pointed out that because the MCT oil can break down plastic that they didn't think it was safe to store it in plastic at all. This got me questioning whether the dietitian had instructed us correctly.
I decided to contact Nestle (the maker of our MCT oil) directly and ask them what was acceptable. This was their response:
"Lisa, Thank you for your e-mail. The MCT® Oil and formula mixture needs to be stored in glass and fed with non plastic utensils such as a glass bottle. In regards to storing the product in a thermos check with the manufacturer of the thermos as some are stainless steel on the outside but have a different material on the inside. The MCT® Oil and formula mixture needs to be held under refrigeration in accordance with the time limit (24 hrs) as specified by your dietitian. Best wishes from your friends at Nestlé Healthcare Nutrition."
My reaction that I posted on the support group on November 10th, 2008: "Now I'm off to the store to buy glass bottles and containers. I wish I would have clarified this 3 months ago. I'm not even going dwell on the possible damage done to my daughter. And I forgive the dietitian for telling me the wrong information but I think I will call and nicely inform her that, according to the manufacturer, she is telling patients the wrong information."
We ended up needing to stop using all the plastic bottles we had purchased (which were the same Medela [read as "not cheap"] bottles used with the breast pump). Luckily the only glass bottle I could find without plastic parts inside the bottle were Evenflo Classic and you could get a 3 pack for just over $5. If only we had known . . . ah, the money we could have saved [sigh].
Because of our insurance switch, we no longer had the same dietitian. This experience helped to remind me that medical professionals are just people and they don't have all the answers. It's important to check information with the manufacturers. If I have any questions now about things I am giving to Sarah, I call the manufacturers.
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