Since Last Time….

Since I blogged last, we’ve had to go back up on Mia’s prednisolone eye drops.  Hourly at first, and  now we are at 6 times a day, but we will taper down to 3 times a day in a few weeks and stay there until we see the doc again in January.  We also saw her Rheumatologist who increased her methotrexate dosage since her eye was still flaring up on the lower dose.  She is at a max oral dose right now.  If this doesn’t keep her uveitis quiet, then the next step is injectable methotrexate (weekly).   Mia hates needles, so I’m hoping and praying that we don’t have to go that route, but it is very common that oral methotrexate just doesn’t cut it because you absorb less of the drug orally than you do if it is injected.   We don’t know when we will see the rheumatologist next… actually, we don’t know who the rheumatologist will be… the old one seems to have moved, but he said we could see him in Phoenix if we wanted to.  They are still trying to find another Pediatric Rheumy to take his place here… so if you know anyone, New Mexico is in dire need of a Pediatric Rheumatologist.  The nearest ones right now are in Denver and Phoenix.

From here out, any  of the “next step” meds will be either injectables or even by IV infusion.  So we are taking it one step at a time, and hoping we don’t have to try the next step.

For now, her eye is quiet and clear, but we still need to get her off the drops as soon as we can.  Her vision in her uveitis eye has gotten a little worse since getting her glasses back in April.  With the recommendation of her eye doc, we’ve started patching her good eye for 2 hours a day to force her brain to use the bad eye, since her good eye was becoming more dominant.  She is putting up with the patching pretty well.  We bought these pretty eye patches with glittery designs.

Since increasing her MTX dosage, it seems her immune system is taking a harder hit… She has been sick with a cold/cough for a month now, and developed an ear infection and a cough that causes chest pain.  She’s been on antibiotics for a few days now.  The problem with MTX, is that it suppresses the immune system so the body can stop attacking itself in autoimmune diseases, but with a lower immune system, infections and illnesses can be easier to catch and harder to get over.  Just a simple cold for one child can easily cause a serious cold, leading to pneumonia or bronchitis for someone who is immunosuppressed.  So if anyone around us is ill or thinks they might be getting sick this cold/flu season, please let us know so we can try to keep Mia healthy.

In other news… Sean has a swim meet today!  He is a little intimidated because now that he is 11, he is in a higher age group than last year, so the kids are faster.  I’m sure I’ll post pictures after the meet.

Kai is becoming quite a sweet talker… Nathan said he might need lessons from him.  Kai is always coming to me and saying, “My beauty!” or telling me how much he loves me and how pretty he thinks I am… he is just way too sweet.  He certainly knows how to melt his Mama’s heart.

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