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.
Thursday, August 20, 2009
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.
Thursday, May 7, 2009
Sleep Training
February 2009
With Sarah's feeding requirements of feeding her every 4-5 hours, this means we do not sleep through the night. I was struggling with getting her to go to sleep in her crib. We tried the Ferber method of letting her cry-it-out but it wasn't really working. I decided I must be doing something wrong with how I was trying to sleep train Sarah. I went to the library but they only had a VHS tape called "Your Baby Can Sleep" by Dr. Stuart Tomares M.D. and I decided that could work because I didn't really have time to read a book anyway.
Through this video I realized the things I was doing that were hindering the sleep training. These were:
In order to have a consistent and set night time routine, I would need to feed right before to maximize the length of sleep she was able to get. In order to ensure this, I decided to set up a time schedule for feeding so she would actually eat before bed.
Sarah’s Schedule
2:00AM breastfeeding
7:00AM Lipistart feeding
Lisa gets dressed and ready for the day, quiet time (often, I sleep some more)
9:00AM wake Sarah up if she is still sleeping, feed breakfast
Sarah playtime Lisa does dishes/housework
11:00AM breastfeeding
12:00PM lunch
3:00PM Lipistart feeding
5:00PM dinner
7:00PM breastfeeding
9:00PM Lipistart feeding
put on pajamas and fresh diaper
brush teeth
read book
lullaby
prayer
9:30PM bedtime
This schedule is nice because the middle of the night feeding is always breastfeeding so I don't need to warm a bottle. This means more sleep for me. I just need to ensure that I am involved with something to keep myself awake so that I don't fall asleep with Sarah.
Also, the 7PM feeding helps with adjusting for when the schedule gets a little off during the day. Meaning: 4 hours is the longest we are to let Sarah go between daytime feedings but she may get hungry after only three hours between one set of meals and then the daily schedule is adjusted accordingly the 7PM feeding would move forward but the 9PM is constant for bedtime.
NAPS
With this routine the nap times are whenever she seems tired during the day and/or falls asleep. Some days she has 4 short naps and some days she has 2 longer naps. This sleep guy advises not to worry about the naps because if they are sleeping well at night their naps will work themselves out on their own. We just shouldn't let naps go longer than 2-3 hours.
This has worked with Sarah.
April 2009
It seemed like Sarah wasn't wanting to breastfeed as much as she wanted to eat solid food and drink the bottle. I looked into it and found that having scheduled feedings is not as good as feeding on demand and can increase the likelihood of premature weaning. At about 8-10 months baby's often (from what I found on the Internet on different sites) tend to seem like they are weaning themselves off the breast. The sites encouraged to just keep plugging away and offering the breast.
With this information, I realized the importance of keeping the schedule flexible. I feed on-demand to a certain degree. The 7PM feeding helps with this. Also, I adjust the schedule so that she often eats solid foods a short time after she has breastfed or drank a bottle.
Also, I've realized that she has shown no signs of CPT II and there is a big possibility that she may not have CPT II. With this knowledge, I just don't stress out about feeding her. I've been treating her feedings as though she were an average child. If we are out of the house and she goes past four hours but I know she has had solid foods in between and she is acting perfectly fine, I just stay calm and get to a place where I can prepare for whatever feeding is next.
This all has made life much easier to handle. Praise God.
With Sarah's feeding requirements of feeding her every 4-5 hours, this means we do not sleep through the night. I was struggling with getting her to go to sleep in her crib. We tried the Ferber method of letting her cry-it-out but it wasn't really working. I decided I must be doing something wrong with how I was trying to sleep train Sarah. I went to the library but they only had a VHS tape called "Your Baby Can Sleep" by Dr. Stuart Tomares M.D. and I decided that could work because I didn't really have time to read a book anyway.
Through this video I realized the things I was doing that were hindering the sleep training. These were:
- We didn't have a consistent bedtime routine
- I was laying down to breastfeed her in the middle of the night and often fell asleep with her OR I would have just bottle-fed her and then she would cry and I was so tired that I just brought her into bed with me because she would stop crying.
In order to have a consistent and set night time routine, I would need to feed right before to maximize the length of sleep she was able to get. In order to ensure this, I decided to set up a time schedule for feeding so she would actually eat before bed.
Sarah’s Schedule
2:00AM breastfeeding
7:00AM Lipistart feeding
Lisa gets dressed and ready for the day, quiet time (often, I sleep some more)
9:00AM wake Sarah up if she is still sleeping, feed breakfast
Sarah playtime Lisa does dishes/housework
11:00AM breastfeeding
12:00PM lunch
3:00PM Lipistart feeding
5:00PM dinner
7:00PM breastfeeding
9:00PM Lipistart feeding
put on pajamas and fresh diaper
brush teeth
read book
lullaby
prayer
9:30PM bedtime
This schedule is nice because the middle of the night feeding is always breastfeeding so I don't need to warm a bottle. This means more sleep for me. I just need to ensure that I am involved with something to keep myself awake so that I don't fall asleep with Sarah.
Also, the 7PM feeding helps with adjusting for when the schedule gets a little off during the day. Meaning: 4 hours is the longest we are to let Sarah go between daytime feedings but she may get hungry after only three hours between one set of meals and then the daily schedule is adjusted accordingly the 7PM feeding would move forward but the 9PM is constant for bedtime.
NAPS
With this routine the nap times are whenever she seems tired during the day and/or falls asleep. Some days she has 4 short naps and some days she has 2 longer naps. This sleep guy advises not to worry about the naps because if they are sleeping well at night their naps will work themselves out on their own. We just shouldn't let naps go longer than 2-3 hours.
This has worked with Sarah.
April 2009
It seemed like Sarah wasn't wanting to breastfeed as much as she wanted to eat solid food and drink the bottle. I looked into it and found that having scheduled feedings is not as good as feeding on demand and can increase the likelihood of premature weaning. At about 8-10 months baby's often (from what I found on the Internet on different sites) tend to seem like they are weaning themselves off the breast. The sites encouraged to just keep plugging away and offering the breast.
With this information, I realized the importance of keeping the schedule flexible. I feed on-demand to a certain degree. The 7PM feeding helps with this. Also, I adjust the schedule so that she often eats solid foods a short time after she has breastfed or drank a bottle.
Also, I've realized that she has shown no signs of CPT II and there is a big possibility that she may not have CPT II. With this knowledge, I just don't stress out about feeding her. I've been treating her feedings as though she were an average child. If we are out of the house and she goes past four hours but I know she has had solid foods in between and she is acting perfectly fine, I just stay calm and get to a place where I can prepare for whatever feeding is next.
This all has made life much easier to handle. Praise God.
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