Friday, July 20, 2018

Being A Parent Is Hard

Back in October I shared this post about Emersyn being diagnosed with familial hypercholesterolemia type 2a. For a quick breakdown, this is what the condition is. It is caused by a defect of the 19th chromosome. It is characterized by high levels of cholesterol as well as high levels of bad cholesterol know as low density lipoprotein (LDL). This defect makes the body unable to remove the LDL from the blood, which can cause narrowing of the arteries at a very early age. Only one parent has to pass this gene onto their children in order for them to get it. If both parents carry this gene and pass it, it can create significant problems and be harder to treat. If this condition goes untreated it can lead to heart disease, heart attack, and stroke at an early age. It is something that should be taken seriously and treated accordingly. Kyle and his Mom both have this condition so we do have experience with it. 

Back in February, E was seen by a pediatric cardiologist in Kansas City and these were her numbers at that appointment:

Total Cholesterol: 242 (less 170 is preferred) 

LDL: 166 (less than 110 is preferred)

Triglyceride: 171 (less than 150 is preferred)

These levels are high for an adult let alone at the time a 17 month old. We were told by her doctor to monitor her diet and make changes. More leafy greens, lean proteins, vegetables, fruits, etc. She was already eating most of those things. Exercise is another huge factor and let's face it she never stops moving so that's not an issue. This was our one and only appointment with that doctor as we were moving. 

Once we arrived in NC we met with her PCM to get a referral to a pediatric cardiologist and thankfully there is one at the hospital on post. She had her first appointment with him this past Tuesday. She did amazing. She was a rockstar during both her EKG and Echocardiogram.
After these tests came the blood draw, which I always dread. However, they make it extremely easy here. They swaddled her on a table with one arm out so she couldn't shift. It made things so much better. Afterward we met with the doctor to discuss treatments possibilities but nothing was official until we got the lab results back. She was exhausted after the appointment and fell asleep in the car.
We received the results back on Wednesday and they are scary. 

Total Cholesterol: 262

LDL: 200

Triglycerides: 242

All of these numbers have risen significantly in a 5 month period. To see these type of numbers for a 22 month old is horrifying. Seeing that her LDLs have jumped 34 points is what really concerns us. We knew at this point that diet and exercise weren't cutting it and that we had to move forward with medication. Our biggest fear is that if we wait and her numbers continue to rise that she could potentially have a heart attack by the time she is 5. That is devastating to think about. Her doctor advised us of the possible side effects of the medications but they are minor compared to what could happen to her. Kyle was on this same medication when he was younger, so I'm thankful that she has him to guide her but gosh it's hard. 

Her medication is in powder form that is typically mixed with water, milk, or juice but let's face it trying to get a toddler to take any sort of medicine is difficult. When I talked to the pharmacist yesterday she gave me the okay to mix it with yogurt. She has to take this medicine 3 times a day and   I knew yogurt would make it so much easier. 
She will have a re-check in 6 months to see if this medication is helping. If it is, she will continue taking it until she is 8-10 years old and then she can be prescribed a statin (lipitor). Kyle has been on lipitor and zetia for his since he was 18. All we can do at this point is provide her with the tools that she needs to help her live a healthy life. She will always have this condition but we can help her manage it. We just hate that she has to live with it and I wish I could take it away so she doesn't have to. 

No comments:

Post a Comment

Love hearing from you!! :)