@jimhd You're so sweet for asking about him! I try and respect his privacy by not mentioning his name Since he’s so private about this entire situation. I try and tell him that people aren’t being nosy but are genuinely asking so they can maybe offer a suggestion or even just a simple prayer but at 16 years old with this condition, it’s just hard so I try and look at it from his point of view.
But, he had his first IVIg treatment a couple of weeks ago. He hasn’t had any pain relief yet, but his doctor wasn’t expecting anything this early. He will have two more rounds before we assess whether or not he’s seeing any pain relief and if we should continue. The only side effect he had was a severe headache the second day of treatment, so he was given another bag of fluids after his Day 3 treatment and that seemed to make a big difference and no more headaches. Hopefully we figured this out for the second round and he won’t get that awful headache at all. 🤞🏼
If the IVIg doesn’t work, we will reconvene with his doctor and see where we go from there. I’m assuming back to trying different meds to see if we can find him any kind of relief.
Jim, I’m so sorry to hear your meds aren’t working anymore. My son tried Prednisone for 30 days and didn’t respond, but didn’t have any side effects either. His doctor did want him on calcium pills while taking the Prednisone so make sure you ask your doc about that for yourself! Another doctor recommended Vimpat, but his neurologist wanted to try the IVIg first, so that may be a drug worth mentioning to your doctor.
Thank you for your content prayers!! They mean all the world to me and to him as well.