Saturday, May 5, 2012

Wednesday Clinic

We packed to stay the night, but with a new doctor comes changes.  She is different from our other doctor.  Thinks out loud.  Thats ok.  But it does spin me a bit.  We packed for IVIG and a steroid pulse.  Which means we packed to possibly stay overnight.  But just the same we were going to be admitted.

Good news is he is doing better.  Well enough to skip this weeks steroid pulse intravenously.  His limp from his hip improved a lot.  When he runs, you can hear it, barely see it.  Means?  Means I can hear a quick thump thump.  A regular run is a step one right after the other, in rhythm.  His is more of a one two one two one two.  So the whole hip lag drap thing is so much better.  I have seen little to no evidence of swallowing issues.  It does not help he came down with a bad cold Friday.  I was surprised they weren't more concerned.  But with no fever,  energy in steroid Zone,  can't treat something that is not there.  He has lost his voice from the cold so the doctor was not pleased with the quality, but he has a cold.

So they stopped Remicade.  They orginally started Remicade not to treat JDM but to treat his colon.  The speculation that the Remicade might be making him flare.  Agree.  Not entirely.

So we held IVIG.  Part of me thinks she is still going to cut it out completely.  We return next week for the next dose of Rituxan and a steroid pulse.  That will be all with the Rituxan for another 4-6 months.

The next week after that we return for another overnight of Cytoxan, IVIG, Pamidronate, and steroids.

We were sent home to come back next Wednesday.

Friday (5/4) we had an emergency dentist appointment.  The day before Gary woke up to what appeared to be a toothache.  He was rolling around on my bed at 6am, crying his tooth hurt.  I immediately gave him tylenol and called the dentist.  It was 7am and they were there.  I couldn't believe.  Gary also see's Children's Hospital in Seattle Dentistry Department.  They deal with immune compromised children.  There is a certain special handling these kids need.  They got us in at 10am.  The dentist saw no immediate evidence of an abscess.  But he does have a few cavities.  Gary is to young for xrays.  The dentist was very nervous so she talked to me about putting him completely under to take care of everything.  They will put him under general anesthesia.  Do xrays, fillings, cleaning, ect,.  I know what you are thinking.  For a dentist?  Really is it necessary?  Yes.  It is.  Gary has had extensive medical procedures that have made him intolerant.   Extremely intolerant.  That was evident during the MRI we tried to get him to do without sedation.  The dentist was even more concerned and motivated to get an xray done when she saw he was on pamidronate infusions.  She explained how these infusions can change the composition of his bones.  She said his baby teeth might not fall out the way they should because of the strength this creates in the bones.  Good add another to the list.  So he will be getting some sleepy juice.  She said it was important to make sure he doesn't have necrosis in the jaw from the pamidronate.  This means the bones dies.  It has not been seen in children, but has in adults.  I love it when it is explained to me, "we are exploring new horizons with this treatment and how it effects dental bone development."   Oh how fun.

He is still trying to recover from a cold he caught.  He has had it for 8 days now.  But it doesn't make him feel bad or sleep bad, so that is a plus.  His heliotrope rash is there on and off.  It is faint enough someone who doesn't know him will say he looks good.

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