It’s been a while since my last post. I have been in a rut so to speak in regards to “thinking” about Timothy’s condition. I go through phases where I just don’t want to deal with it. Or even think about it. And that’s where I have been. But I am back for now. I must go on with promoting awareness and share about Timothy in hopes that he will find a cure. Lord willing.
Timothy has been relatively healthy the past month. He had a few fevers with no other symptoms, but that’s about it. I am going to highlight some of his “side effects” to his condition. There are many and for some unfortunate reason, Timothy seems to get most of them :(.
1. Mouth/tongue sores. He had these a while back and it disappeared. But for the past few months, it’s been there constantly especially on his tongue. It bothers him when I brush his teeth.
2. Face rash. These come and go for no apparent reason. A few days ago, I noticed a different rash on his neck. He will have sensitive skin because one of the antibiotics he is on causes skin sensitivity. Sun-block will be his best friend when playing outside.
3. Crohn’s–like symptoms. Inflammatory bowel disease occurs in about 50% of the patients. Doctors say many immune deficient patients also have autoimmune issues as well. They measure the inflammation by testing the levels of calprotectin in his stool. For a normal person, it’s around 50. Timothy’s measured above 1600. Last time we checked, it was 300+. Clinically, as long as he is not losing weight and is growing, we are okay. Right now, his GI tract seems normal, no blood, no mucous, no diarrhea. He has been eating yogurt everyday since he started solids at 4 months of age. The live active culture helps his system. Also being on antibiotics for an extended amount of time causes inflammation in the bowel as well.
4. Skin pimples. He had one a few months ago. A huge one that lasted a while. It just would not go away.
Some CGD patients get some of the above mentioned “side-effects” and some don’t. Timothy has them all. Every day I see these manifestations of his disease, my heart sinks a little lower and heavier. Dear God, have mercy on Timothy and me too.