Sunday, November 10, 2013

Immunology Visit

This was the first time we have EVER seen an Immunologist for Haven.

I wasn't sure what this meeting was going to be about or how helpful it would be but I have been desperately trying to figure out why Haven's immune system won't kick back in.  We've been doing this for 6 years now and she's a little tired of it and we just don't know how low she can go before it's bad.

The Immunologist was super great.  Haven really likes her.  She was very personable and I think Haven loved that she was pregnant too.  She already knew about Haven from hearing stories about her over a year ago.  Which was amazing.  So she also knew about ROHHAD.  This is AWESOME to a mother with a ROHHAD child because it's hard to find anyone that has heard of it or even looks it up before you enter the office.

She was a bit shocked I would say at Haven's IVIG dose.  She thought it was rather high.  Which explains why Haven has migraines now and especially for two days after IVIG.  She wants to lower the dose and is going to talk to Oncology.

We also discussed with her moving to the new hospital because they do her labs and infusions on Saturdays which works out better with my schedule and having to work to feed and pay for medical bills!  She is going to discuss with Oncology the possibility of taking over Haven as a patient.  Honestly we don't need to see Oncology - we'll never have doctors like we did at Hopkins - and we only see her every 12 weeks for about 15 minutes.  They don't do anything on weekends and she doesn't even have a bed to sleep in for the 6 hour treatment.  Keeping fingers crossed and I have to make lots of phone calls when I get back from this trip.

If they do get the approval to lower he dose Haven will go back to every 8 weeks instead of 12 weeks - if this helps headaches then I'm ok with it.  She will also only have to do 4 hours of treatment instead of 6 hours.  This is awesome!  Not to mention through the winter months I would prefer more immune system bump ups than less.

So I should know by Thanksgiving what is going on here.  She doesn't have IVIG until December sometime - again I have to check these calendar dates.  They seem so far away when you make them and then you leave the country for a month and BAM they are all on top of you!

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