Monday, March 22, 2004
I just have one correction - Danilo's next appointment with Dr. M. is on 4/26. His CT scans are still up in the air, although I talked to Beverly just now and it should be straightened out in a couple of days.
Visit with Dr. Mitchell
I went along with Oge to Danilo's doctor appointment today. Danilo has gained 5 pounds only since his last visit. Weird, 'cos it looks like more. His face is a little puffy from the steroid treatment I guess. His blood pressure was slightly high (131/77), but Mitchell doesn't think he needs blood pressure medication at this point.
Danilo has been getting 1 cc of ACTH daily. For the rest of March, every other day Oge is to lower the dose. So, on even days, Danilo will get 1 cc and on odd days she'll go down from 1 cc by .05 until it's down to zero (I think this is right, but she wrote it down for Oge). In April, on odd days he'll get a whole dose and nothing on even days. If Danilo relapses, Oge is to call Mitchell. He will then probably be put on IVIG as well or another immunosuppressant that she did not name.
She wants to taper the ACTH down because prolonged use of it can cause problems with bone metabolism, bone density, and bone growth. She says it's not the ACTH that does it, but the cortisol the body produces when one is on ACTH. She says we can try giving Danilo over the counter supplements of vitamin D and calcium, but she's not sure they really help. (She said Trader Joe's has some chocolatey, chewy calcium supplements. I'll probably go to Trader Joe's later in the week and will look for them)
Danilo has an appointment for the CT microscans on April 26th at 4 pm.
Mitchell recommends Danilo go to pre-school, but maybe be put in a group of 3 year olds rather than 4 year olds because his motor skills are still lagging. She suggests if he's in school to have the school call Oge if any kids in the class get an illness such as chicken pox. Danilo was vaccinated for chicken pox, but she says it's possible he could be effected if exposed while on ACTH. If he were to break out in spots, he should be hospitalized immediately and Mitchell would put him on a drug that I didn't catch the name of.
Mitchell wants Danilo's blood sugar tested.(I think she wrote a prescription for a home test) Also, she suggests at Danilo's next ophthalmologist appointment that Oge pop in with Danilo to see Dr. Borchert who has been told about the opsoclonus. Both Danilo's eyes were slightly crossed today. Danilo was going to be scheduled for surgery to tighten or loosen eye muscles, but Oge isn't sure about doing this now that his eyes keep shifting. I asked Mitchell if the eyes might correct themselves and if she's seen other kids with OMS with crossed eyes. Mitchell said she's seen a couple of other kids with the same problem who needed surgery, but she couldn't really judge Danilo's case by that. I asked if she thought Danilo would continue to get steadier on his feet and she thinks he will. I asked if it's possible Danilo suffered any cognitive impairment from having OMS untreated so long (Remember Liz at Pranzatelli's office said he would lose IQ points). Mitchell thought Danilo seems better than average cognitively. She mentioned something about the possibility for him to be formally assessed, but I don't think we have an action plan on that note.
The ACTH is making Danilo ravenously hungry. During the whole appointment Danilo kept saying "MacDonalds." I now see the master plan behind the whole Ronald MacDonald House scam. ;)
Danilo has been getting 1 cc of ACTH daily. For the rest of March, every other day Oge is to lower the dose. So, on even days, Danilo will get 1 cc and on odd days she'll go down from 1 cc by .05 until it's down to zero (I think this is right, but she wrote it down for Oge). In April, on odd days he'll get a whole dose and nothing on even days. If Danilo relapses, Oge is to call Mitchell. He will then probably be put on IVIG as well or another immunosuppressant that she did not name.
She wants to taper the ACTH down because prolonged use of it can cause problems with bone metabolism, bone density, and bone growth. She says it's not the ACTH that does it, but the cortisol the body produces when one is on ACTH. She says we can try giving Danilo over the counter supplements of vitamin D and calcium, but she's not sure they really help. (She said Trader Joe's has some chocolatey, chewy calcium supplements. I'll probably go to Trader Joe's later in the week and will look for them)
Danilo has an appointment for the CT microscans on April 26th at 4 pm.
Mitchell recommends Danilo go to pre-school, but maybe be put in a group of 3 year olds rather than 4 year olds because his motor skills are still lagging. She suggests if he's in school to have the school call Oge if any kids in the class get an illness such as chicken pox. Danilo was vaccinated for chicken pox, but she says it's possible he could be effected if exposed while on ACTH. If he were to break out in spots, he should be hospitalized immediately and Mitchell would put him on a drug that I didn't catch the name of.
Mitchell wants Danilo's blood sugar tested.(I think she wrote a prescription for a home test) Also, she suggests at Danilo's next ophthalmologist appointment that Oge pop in with Danilo to see Dr. Borchert who has been told about the opsoclonus. Both Danilo's eyes were slightly crossed today. Danilo was going to be scheduled for surgery to tighten or loosen eye muscles, but Oge isn't sure about doing this now that his eyes keep shifting. I asked Mitchell if the eyes might correct themselves and if she's seen other kids with OMS with crossed eyes. Mitchell said she's seen a couple of other kids with the same problem who needed surgery, but she couldn't really judge Danilo's case by that. I asked if she thought Danilo would continue to get steadier on his feet and she thinks he will. I asked if it's possible Danilo suffered any cognitive impairment from having OMS untreated so long (Remember Liz at Pranzatelli's office said he would lose IQ points). Mitchell thought Danilo seems better than average cognitively. She mentioned something about the possibility for him to be formally assessed, but I don't think we have an action plan on that note.
The ACTH is making Danilo ravenously hungry. During the whole appointment Danilo kept saying "MacDonalds." I now see the master plan behind the whole Ronald MacDonald House scam. ;)
Tuesday, March 16, 2004
I just heard that insurance authorized the new MRI so finally we'll get the scans done again. Maybe they will find something? Hm...
As a side note, I took Jon Carlo to see Linkin Park last night. Yay!
As a side note, I took Jon Carlo to see Linkin Park last night. Yay!
Friday, March 12, 2004
Just had dinner with Oge, JC, and Danilo. Danilo's walking is better and his intention tremors have diminished. Oge says the drooling and snoring are much less. His verbalizing continues to improve and his appetite is huge. He's already put on weight and looks better. The strabismus in the left eye has switched to the right eye.(It's done this at least once before and switched back I believe)
