Dear Madison,
Your first treatment is behind you and I know you are already dreading the next. I know what you MUST be thinking: How could your parents, people who are supposed to love you and keep you safe, allow you to be poked with not one needle but TWO needles (one in each leg), and infuse some kind of crazy medicine into you that makes your skin itch and swell at the infusion site and then makes you so sore that you can’t even walk up stairs. Believe me; we are weighing the pros and cons of all the treatments side effects against the consequences of not giving you this treatment.
Maybe a little background on the treatment will help you understand. This treatment, this medicine, Hizentra, is used to boost the body's natural defense system against infection in persons with a weakened immune system. That is you…You have low levels of IgG and that is why you get sick so easily. You can’t help it but you can help your immune system with this SubQ IgG replacement therapy.
So you may be itchy and a little sore but we will give you Benadryl and ibuprofen for those things. I would rather handle those side effects then have your body work so hard every day trying to stay healthy! That has got to be hard work! Your body temperature is not supposed to run at 99.9 every day. You shouldn’t have to take antibiotics, and steroids and breathing treatments all the time. These treatments should give your body a little break from having to fight so hard all the time.
After 6 total treatments you will have enough of the medicine built up in your system and then you will only have to do the treatments once a week (at home). So let’s hit magic # 6 so you don’t have to worry about:
Your first treatment is behind you and I know you are already dreading the next. I know what you MUST be thinking: How could your parents, people who are supposed to love you and keep you safe, allow you to be poked with not one needle but TWO needles (one in each leg), and infuse some kind of crazy medicine into you that makes your skin itch and swell at the infusion site and then makes you so sore that you can’t even walk up stairs. Believe me; we are weighing the pros and cons of all the treatments side effects against the consequences of not giving you this treatment.
Maybe a little background on the treatment will help you understand. This treatment, this medicine, Hizentra, is used to boost the body's natural defense system against infection in persons with a weakened immune system. That is you…You have low levels of IgG and that is why you get sick so easily. You can’t help it but you can help your immune system with this SubQ IgG replacement therapy.
So you may be itchy and a little sore but we will give you Benadryl and ibuprofen for those things. I would rather handle those side effects then have your body work so hard every day trying to stay healthy! That has got to be hard work! Your body temperature is not supposed to run at 99.9 every day. You shouldn’t have to take antibiotics, and steroids and breathing treatments all the time. These treatments should give your body a little break from having to fight so hard all the time.
After 6 total treatments you will have enough of the medicine built up in your system and then you will only have to do the treatments once a week (at home). So let’s hit magic # 6 so you don’t have to worry about:
· Going to school
· Going to gymnastics
· Going to Sunday school
· Going on an airplane
· A sneeze
· A cough
· Drinking out of a water fountain (I still don’t think ANYBODY needs to do that)
· Taking a prophylactic antibiotic
· Taking steroids
· Taking nebulizer treatments every 4 hours
· Growing
· Swimming in a pool
· Having a teacher ask if it’s ok to touch you
· Playing with friends and family
You are one tough cookie, little Madison. Thank you for your smile, your resilience, and for understanding why we are doing this (maybe not today but someday)!
Amy,
ReplyDeleteThank you for being such a great mom and wife. You amaze me at how well you deal with the kids health issues and how you help them understand what thay are dealing with. I am so lukcy to have you in my life and so our the kids. Sometimes I know it gets overwhelming but in the end we always make it. I am so thankful you are in my life.