I am back with an entry on Timothy’s condition. After a little break with last post, here’s a window into Timothy’s life. He takes 3 different meds. Two are shown right below. Both are liquid antibiotics dispensed with a syringe. He takes one for bacterial infections (Bactrim) and the other for fungal (Itraconazole or Sporanox). Since he is above average in weight and height, the dosage has increase several times. This is difficult because with each increased dosage, his body adjusts with some diarrhea and stomach upset.
The antibiotics are flavored, so Timothy doesn’t resist. But since it is sweetened, we thought he developed some cavities. By the way, Timothy got his first tooth very early, around 3 1/2 months. He now has 14 teeth. Fortunately, it was just discoloration from the meds, a side effect to taking antibiotics regularly.
Timothy’s 3rd medication is a shot, administered 3 times a week. We have a calendar to keep track of which thigh to administer it to. It is an immune boosting shot frequently used for patients with compromised immune system, i.e. cancer patients. The Interferon Gamma 1B is a very expensive medication. Per shot, it’s approximately $400. Research has shown it has been very effective in treating CGD patients.
The shot does not hurt Timothy. It’s subcutaneous, very similar to an insulin shot for a diabetes patient.
What a brave little man! He's such a sweetie. It's so good to be able to read about Timothy and your journey in finding him a cure. It brings us awareness and helps us to keep our eyes and ears wide open with any info we may come across that may be helpful to you. Praying.ReplyDelete
From having to give Ava 1 medication a day for 14 months and all the stress that gave us, I can't imagine the stress of giving 3 for his whole life. Does insurance cover most of the cost of the shot? I hope you're not having to pay the $400/shot! As always, love and prayers for health now and a cure soon!ReplyDelete
@Jess: Yes, insurance covers most of the cost. Thank goodness for that. :)ReplyDelete
Hello my name is Kyle,ReplyDelete
I am so sorry that Timothy has to deal with this terrible disease. I myself am affected with CGD. I am now turning 24 this coming week and was diagnosed when I was just 1 years old. I had to have part of my lung removed when I had a severe pneumonia. I hope he continues to battle and live a happy life the best as us with CGD possibly can. I am now actually considering a BMT because of issues with colitis now. I pray that this will cure my issues and maybe in the future that could be something that timothy can have do to cure him of his issues. My prayers be with you and Timothy.