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.
My daughter, Sarah, was born in July of 2008. The Newborn Screening for our state flagged her as possibly having a genetic disorder. Her genetic metabolic doctor diagnosed her with "Presumptive" CPT II, Carnitine Palmitoyltransferase II Deficiency. This blog documents some of our experiences with this part of our life journey.
About Me
- Lisa
- I always claimed that having a child and motherhood would be my biggest test of faith. I had no idea. Then we added foster parenting to the mix. If anything, I've learned how selfish I really am.
Disclaimer
You should always consult a medical professional about the care of yourself or a loved one. I am not a medical professional. This blog is just a journal of one family's experience.
The Purpose of This Blog
This blog was set up to document my journey in the hopes that other parents may be encouraged, may feel some sort of peace in knowing that someone else is struggling with similar emotions and hardships, or that they may simply learn something from our experience.
This blog was started when Sarah was 6 months old. I began writing all my memories from her birth until the current time as best as I could remember.
After I began writing these posts, I found that the act of journeling helped me to better accept and understand my emotions and struggles. Please know that these posts are intended to document my experience. I'm writing all that I remember to help myself cope and remember what I have learned along the way.
This blog was started when Sarah was 6 months old. I began writing all my memories from her birth until the current time as best as I could remember.
After I began writing these posts, I found that the act of journeling helped me to better accept and understand my emotions and struggles. Please know that these posts are intended to document my experience. I'm writing all that I remember to help myself cope and remember what I have learned along the way.
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