A fever, a postpone in IVIG, and an appt with Dr G
We were cruising through IVIG #19. We came in Thursday morning for his last day of infusions, and unfortunately, Hunter was running a 101.3 fever. He has run fever the previous two infusions on day 4, but just a low grade temp. The nurse called Dr G and he said to stop and not complete the infusion. We had the nurses run a strep test due to Paige having strep last week, but it was negative. After talking with his nurse later in the day, we decided to meet this morning to have him assessed and determine our course of action.
He stopped running fever about noon yesterday, and was completely fever free today. We talked with the fellow first, and gave updates, and then Dr. G came in to a screaming Hunter, who was just singing with me two minutes prior. His anxiety dramatically increases when there is more than one person in the room, as evidenced this round when he sat completely still for Nurse Jill after he asked for only ONE nurse to be in the room. Dr G. won him over by getting him to agree to answering 4 questions, including one about Lightning McQueen. After they finished their dialogue, we immediately dove into concerns and upcoming treatments so we could quickly make it across town (well, across several towns) to get to the infusion center.
I had made a list of questions last night and prepared documents of progress, concerns, school notes, etc. Here's the cliff notes version of his responses:
1) Medication: Should we be adding something in to help with attention and the incessant OCD that has ramped up recently? Yes. He said that we go through periods of our brain opening and closing, and we never know when that time will be. He really wants us to hit it hard the next two years before he turns 10 so we can maximize the chance for change. He wants us to focus hard on the CBT (cognitive behavioral therapy) and really follow through with principles once they are established. We have gone back and forth from ignoring or taking away Thomas/McQueen items, but we are going to meet with the psychologist to determine best course of action going forward. He wants us to start Lexapro, an SSRI, to help with the anxiety and OCD.
2) Frequency of infusions: Do we keep at 4x/year? Yes. Especially if we add an SSRI, he would like to keep all variables the same. And since we will see a decline about 10.5 weeks post-infusion, he wants to keep it around 12-14 weeks between each treatment.
3) When he hurt his foot, did his behavior tank because of inflammation? No. He thinks the behavioral changes are mainly due to his pain and not being able to handle it like the rest of us.
4) Mentioned we had started the ice skating and piano lessons. Asked if we should concentrate our time more on behavioral therapy. NO! He was super excited about the extracurriculars.
5) His creatine levels are checked each time we go for IVIG. His last level was .6, when reference range is .3-.7 (increased protein load on kidneys can be a concern with IVIG). Concerned? Nope!
He is still extremely pleased with his level of interaction (and we showed him his Valentine's class presentation- he loved it) and said we just need to keep documenting for insurance to continue to approve his extremely expensive infusions. He's not sure we have reached our max potential yet, as he is continuing to grow and mature, and we still have a little room to change that brain.
He reiterated the importance of the next two years, as he will continue to keep growing taller, getting stronger...and we want all behaviors under control. We haven't had rages like we have had in the past in a LONG time- not to jinx anything, but we haven't had to take our TV out of the family room since he was in kindergarten. He hasn't flung an object at it since then.
Overall, I'm relieved to have met with Dr. G before continuing his treatment today. I was obsessing about aseptic meningitis, as I'm pretty sure they didn't follow the rate ramp guidelines on Wednesday when we were out of the hospital 30 minutes faster than usual. With an increased rate, you also increase the chances of brain swelling. I've watched them all like a hawk today. :)
God is good. It is to believe that we have been here 19 times.
As I held his hand today waiting for his dr appointment, my fingers traced the numerous scars from the 19 IVs he has had started over the past 2 years. We started this process 2 years ago this week, and what a difference we have seen in our child.
Thank you for continuing to pray with us, and for us. Please pray for guidance regarding medicine decisions and the health of our son.
He stopped running fever about noon yesterday, and was completely fever free today. We talked with the fellow first, and gave updates, and then Dr. G came in to a screaming Hunter, who was just singing with me two minutes prior. His anxiety dramatically increases when there is more than one person in the room, as evidenced this round when he sat completely still for Nurse Jill after he asked for only ONE nurse to be in the room. Dr G. won him over by getting him to agree to answering 4 questions, including one about Lightning McQueen. After they finished their dialogue, we immediately dove into concerns and upcoming treatments so we could quickly make it across town (well, across several towns) to get to the infusion center.
I had made a list of questions last night and prepared documents of progress, concerns, school notes, etc. Here's the cliff notes version of his responses:
1) Medication: Should we be adding something in to help with attention and the incessant OCD that has ramped up recently? Yes. He said that we go through periods of our brain opening and closing, and we never know when that time will be. He really wants us to hit it hard the next two years before he turns 10 so we can maximize the chance for change. He wants us to focus hard on the CBT (cognitive behavioral therapy) and really follow through with principles once they are established. We have gone back and forth from ignoring or taking away Thomas/McQueen items, but we are going to meet with the psychologist to determine best course of action going forward. He wants us to start Lexapro, an SSRI, to help with the anxiety and OCD.
2) Frequency of infusions: Do we keep at 4x/year? Yes. Especially if we add an SSRI, he would like to keep all variables the same. And since we will see a decline about 10.5 weeks post-infusion, he wants to keep it around 12-14 weeks between each treatment.
3) When he hurt his foot, did his behavior tank because of inflammation? No. He thinks the behavioral changes are mainly due to his pain and not being able to handle it like the rest of us.
4) Mentioned we had started the ice skating and piano lessons. Asked if we should concentrate our time more on behavioral therapy. NO! He was super excited about the extracurriculars.
5) His creatine levels are checked each time we go for IVIG. His last level was .6, when reference range is .3-.7 (increased protein load on kidneys can be a concern with IVIG). Concerned? Nope!
He is still extremely pleased with his level of interaction (and we showed him his Valentine's class presentation- he loved it) and said we just need to keep documenting for insurance to continue to approve his extremely expensive infusions. He's not sure we have reached our max potential yet, as he is continuing to grow and mature, and we still have a little room to change that brain.
He reiterated the importance of the next two years, as he will continue to keep growing taller, getting stronger...and we want all behaviors under control. We haven't had rages like we have had in the past in a LONG time- not to jinx anything, but we haven't had to take our TV out of the family room since he was in kindergarten. He hasn't flung an object at it since then.
Overall, I'm relieved to have met with Dr. G before continuing his treatment today. I was obsessing about aseptic meningitis, as I'm pretty sure they didn't follow the rate ramp guidelines on Wednesday when we were out of the hospital 30 minutes faster than usual. With an increased rate, you also increase the chances of brain swelling. I've watched them all like a hawk today. :)
God is good. It is to believe that we have been here 19 times.
As I held his hand today waiting for his dr appointment, my fingers traced the numerous scars from the 19 IVs he has had started over the past 2 years. We started this process 2 years ago this week, and what a difference we have seen in our child.
Thank you for continuing to pray with us, and for us. Please pray for guidance regarding medicine decisions and the health of our son.
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