We went to Ranch Market today and enjoyed some aguas frescas after playing miniature golf. I tried the Jamaica flavor. It is made from Hibiscus Flowers, like a tea, and then sweetened with sugar. It was really good! I like to get Passion Tango tea at Starbucks, which also has hibiscus in it, but this was WAY better than that one. Nathan had the Pecan agua fresca, which was also really tasty. Sean had banana. Mia got honeydew, but didn’t end up liking it much. Kai got lemon and guzzled it down, then had to go to the bathroom right away.
Mia had another follow-up today, on her birthday. It has been a week since we started treating her recurrent uveitis. I’m happy to report that her eye looked great today. Not much inflammation left, although she has developed some scar tissue once again, but it isn’t severe. Her ocular pressures look good as well. Her vision was also improved since last week. We are down to a drop every 2 hours now, for the next 2 weeks, and then we will see where she stands at that point. We will still keep up with the dilating drops to help break up the scar tissue. Hopefully we can start tapering her off again, but at a much slower pace to help prevent recurrence. This was such good news for us! I’m so glad that she is still responding well to the drops.
We also got news today that my nephew got to go home from the hospital after a bout of severe asthma and possible pneumonia due to some sort of respiratory infection. He had been in the hospital all week, plus a few days last week.
Much to be thankful for today!!!
We had another follow-up for Mia with her regular eye doctor today. Her uveitis is recurring, and since it is happening within 1-2 weeks of stopping the steroid eye drops, this is considered part of the same flare up. This means that the inflammation never actually went away and that it was able to flare up again once the drugs were out of her system. The inflammation got bad again, so we are back to steroid eye drops every hour, and dilating drops 3 times a day until the inflammation starts to go down. We have another follow-up in a week.
The good news is that her eye pressure is normal for now, so we don’t have to add in a third eye drop to treat that. The bad news is that if it takes her longer than 2 months to get over this episode, the next step would be to try oral medications like methotrexate to get things under control. I’m really hoping we can avoid that because there are many more possible side effects.
This set back is a real bummer. We had a total of 4 days where we didn’t have to do any drops at all. That was really nice. It’s hard to live by an alarm that goes off every hour, and sometimes every 5 minutes when she needs multiple drops. She is still being such a trooper with all the daily interruptions she gets, but I know sometimes she gets frustrated. I’m thankful that the drops worked well before, so I hope that continues.
Unfortunately Mia’s uveitis is back. They consider this “Rebound Inflammation”, meaning that it came back quickly (never really went into remission) and is likely part of the same flare up. We are back up to a steroid eye drop once every hour, and a dilating eye drop 3 times a day to try to let the eye rest and prevent scar tissue from developing. Mia and I are both sad that it came back so soon. The doc we saw today said we may just need to taper her off the steroid drops very slowly, or even try oral medications like methotrexate (ugh!). We will see her regular eye doctor on Friday morning. They may also suggest that she head back to see the Rheumatologist since this is still an active flare up. Once again, thankfully, she isn’t suffering much pain… a little leg pain, stomach pain, and a little eye pain, but from what I understand, it could be MUCH worse. So Praise God for that! I’m also very thankful we have access to such a great medical team for our girl. They think she is likely having inflammation all over her body, but the most obvious is the eye. So please keep those prayers and well-wishes going!!!
Kai is quite a smooth talker, even at 3 years old. He is also very good at stalling at bedtime. Last night, past bedtime, he brought me to tears by saying “I want to snuggle with your first.” I held him for a bit, then he said, “I want to have a sleepover with you because you’re my best girl.” Ugh… tears… the cuteness was just too much! Then this morning, he told me, “You’re my best girl, mommy. And I like gum too.”
At a follow-up appointment at the pediatric ophthalmologist this afternoon, Doc said we can STOP ALL EYE DROPS for now. Whoo-hoo! Can you see me? No?! Well too bad, cause I’m doing a rockin’ “Happy Dance” right about now! Mia’s eye no longer has any inflammation, so she is considered healed from this episode. Her pupil never did return to its regular round shape, but it’s close enough, and it shouldn’t affect her vision too much. Her ocular pressure is back to normal in both eyes, but still on the higher end of normal in her good eye. This should also go back down as the drugs continue to clear her system. No formation of any cataracts, either, which can be caused by some of the eye medications.
Her left eye vision is still not as good as her right, but she will be re-evaluated in about 6 months to see if she might need glasses. She will need eye check-ups every 3-4 months to monitor for new episodes until 7-9 years old. This is because younger children tend to not show as many symptoms as older kids, so their uveitis can go untreated for too long without regular checks. So our next check up will be in April. Thanks to everyone for all the prayers and well-wishes over the past few months! They were all answered!!!
Little Miss had her evaluation today for Physical Therapy. The PT said that even though her right leg muscles are a little smaller than the left, she didn’t see any cause for concern. She said sometimes it’s just how kids grow, but if there was any evidence of weakness (problems running, jumping, walking, etc), then it could be a problem. Little Miss was able to do all the exercises she asked her to perform, and while it was apparent that the right was a bit weaker than the left, it wasn’t abnormally weak in general. She showed great coordination on both sides. So we left there with the recommendation that we do home care with specific exercises and stretches to try to even up her strength in her legs. Yay! Answered prayers! The thought of going to PT twice a week (like the rheumatologist was recommending) was hard to swallow and sounds very expensive!
The next appointment coming up is a follow-up with the eye doc… we’ll see how she is doing now that the steroid eye drops are being tapered off. She’s down to one steroid drop a day this week, and then zero next week. Let’s pray that the inflammation has cleared up and that she won’t have to continue the drops!
Little Miss had an appointment with the Pediatric Rheumatologist today. I thought we’d have to wait until the beginning of 2015 to be seen, but they called last week and said they had an opening (yay!). No joint issues were obvious, but he noticed that her left leg muscles are larger than her right leg muscles. He said this is sometimes seen when one leg is used to compensate for the other leg when kids have joint pain. He is referring her to a Pediatric Ortho Doc and is recommending Physical Therapy to strengthen her right leg. Once again, we have to wait for our insurance to pre-approve the treatment to see the Ortho doc, so we just wait. He recommended PT twice a week for an indefinite period of time. She is also being referred to a Pediatric Dermatologist for a few skin and fingernail issues. He wants to make sure that she does, indeed, have eczema and not Psoriasis. Psoriasis is a concern because it can also affect the eye. If it is Psoriasis, treatment would still be the same, but it’s just a good thing to know.
New blood tests were ordered today. It took 3 sticks and 2 different phlebotomists to get blood. She did SO WELL. She cried a little, but it was mostly in anticipation of the needle. How I wish I could have the needle sticks in her place! She amazes me that she is still so sweet and talkative even when she is crying and scared. She was telling the phlebotomists about her brothers, video games, board games, unicorns, etc. Fun Fact: The phlebotomist who did her blood draw today was one of the ones who trained me when I was doing my clinical training in Med Tech school about 15 years ago. That was pretty cool.
Today’s check-up went well. Mia’s inflammation is no longer active. It has mostly cleared up. Whoo-hoo!!! We will be tapering down on the corticosteroid eye drops 6x/day this week, 4x/day next week, 3x/day the following week, 2x/day for a week, 1x/day another week, then no drops for a week before going in for her next follow-up in 7 weeks. She still has a couple of spots of scar tissue on her iris, but the pupil shape has improved. We will continue with her eye drops for dilation until further notice.
The only problem today was that her ocular pressure was a little high. This is likely due to the use of the steroid eye drops. Since we have to continue using the steroid drops, we also have to add in another eye drop to combat the ocular hypertension twice a day. So we are still having to do a TON of eye drops, but there is an end in sight. After tapering down on the steroid drops, she may be able to go without them, or only need them occasionally to keep her eye healthy.
Her eye doc is happy with how things are progressing (as am I). We still don’t have an appointment date for the pediatric rheumatologist since we are still waiting for pre-approval from insurance. Mia’s vision is still improving little by little. Since our next appointment isn’t until January 16, this will be the last eye update for 2014, assuming things go as planned and continue improving. Thanks to everyone for the prayers and well-wishes!
Mia had another follow-up appointment with her awesome Pediatric Ophthalmologist on Friday. Her inflammation is down to about 50% (answered prayer!) and all structures in her eye are looking good and her ocular pressure is normal and stable. She still has some scar tissue on a few spots on her iris, so her pupil is still an odd shape, but it is definitely looking better than before. We have another week of hourly corticosteroid eye drops, then we will try tapering it down to every 2 hours. We have to watch for rebound inflammation, and if it starts to increase again, then we will go back to hourly drops. We will also continue the dilating eye drops 3 times a day to continue to work on the scar tissue that is remaining. Over all, her progress is going well. At this time, there is no need for stronger oral corticosteroids (another answered prayer!).
We are still waiting for all paperwork and approvals to go through so that we can bring her in to see the Pediatric Rheumatologist at UNM Hospital. It isn’t an urgent situation since she isn’t showing any sort of joint symptoms. This condition is likely to return throughout her lifetime, so hopefully if it happens, we can always catch it early enough so that it doesn’t cause permanent damage. That’s a bummer, but it’s good that we know what to look for now. Another great development this week is that her vision in the affected eye is much better than that first week we came in. Hopefully it will continue to improve as the inflammation continues to dissipate. Our next follow-up appointment with the Ophthalmologist will be in 2 weeks.
Did you know that there is only 1 Board Certified Pediatric Rheumatologist in NM? We are very fortunate to have one here, since I’ve heard that some people have to travel to different states to see a specialist. Apparently, there are fewer than 200 certified pediatric rheumatologists practicing in the US. We are certainly very blessed to have access where we live.