Rheumy Follow-up, Adding New Medication

We finally got an appointment for a follow-up with the Pediatric Rheumatologist.  We had to miss an appointment in April because of being out of town, and they called yesterday to see if we could come in early this morning.  We have been on a waiting list since April, so there was no way we would miss this appointment. Thankfully my mom was able to meet me at the clinic to watch the boys while I went in with Mia.  (Thanks Mom!!!)

Since her uveitis is flaring up every time we go off the eye drops, we need try other meds to get her immune system to stop attacking her eye.  The first one that is usually tried is methotrexate, since it has been in use for a long time, and the side effects and safety in children are known.  We will be starting on MTX (Methotrexate) this week.  Please pray it goes well.  As long as she tolerates it orally, we can administer it with weekly tablets, but we may have to go to a weekly shot later on down the road (I’d have to do it myself – dreading having to do that) if it causes too much nausea.   The MTX will compromise her immune system, so she will be more prone to illnesses.  If anyone who will be around us is sick or might be sick, please let us know, so we can take a little extra precaution.  The drug also affects folic acid in her body so she needs to take a supplement as well.  The nurse said most kids tolerate the MTX just fine with little or no nausea… I’m praying she will be in that group.

She had to have more blood tests today, and more in 3 weeks.  She is such a brave little girl.  She cried a few tears when the needle went in, then proceeded to laugh at her mommy being silly while the phlebotomist was drawing the various tubes of blood he needed.  I was threatening to lick her post-needle lollipop and stick it in my hair.  :) We will be monitoring her liver function while she is on MTX since it can affect the liver.  If she does start to have liver problems, they will hopefully resolve after discontinuing the meds.   I hate that this has become a part of her life.  I wish I could take it all away.  She asked me today why there are so many things wrong with her.  Ugh! Makes me want to cry.  I don’t want her to see herself in terms of “what’s wrong with me” because she has health issues.  I want her to see what I see… how wonderful, strong, brave, capable, and courageous she is despite her health issues.  She might have this eye/autoimmune issue, but otherwise, she is healthy, so I’m very thankful for that.

The Pediatric Rheumatologist (the only one in NM) we first started seeing is now only seeing patients one week each month.  The clinic has another Pediatric Rheumatologist that is flying in from California (we saw her today) for a week each month to also see patients.  They currently have 2 positions open for permanent Pediatric Rheumatologists, so hopefully they are able to fill those positions soon.  It is very hard to find someone in this specialty since there are only about 300 Pediatric Rheumatologists nationwide.  I’m so glad that we are still able to see a doc here in NM, and not have to travel to another state to see a specialist.  This is why it has been so hard for us to get an appointment.

The Rheumy also said that Mia’s joints were hypermobile (too flexible) and recommended that we take some precautions to help prevent pain and injury.  She is very flat footed, and this might be the cause of her frequent foot, leg, hip and back pain.  The doc recommended getting her arch support inserts for her shoes and taking extra precautions to try to prevent injury when she is doing sports activities.  She said she should try to stick with lower impact sports like biking and swimming, and that gymnastics (which is what she really wants to do),dancing (which she loves to do), and running (which she also enjoys) might not be the best fit.  I’m a little torn on what to do there… I don’t want to limit what she participates in based on what might happen or injuries that might occur.  People get injured every day, right?  But at the same time, I would feel guilty if she got injured doing something the doc said was a bad idea.  I just don’t want to limit her activities based on “what if’s”.

So for now, her eye is stable.  We will start MTX and hope that will allow us to decrease the eye drops down to zero.  Then if she stays flare free on MTX for a while (1-2 years, usually), we can start to wean her off if it and hope and pray for complete remission.  Her vision is stable in the bad eye, the last flare didn’t seem to cause further damage since we were able to be seen right away.  She still has plenty of scarring in that eye though where the pupil is stuck down and oddly shaped.  Please keep us in your prayers and thoughts.  Keep praying for healing and for us and her team of docs as we make decisions for her.  Pray that she tolerates the MTX with minimal side effects.

 

Here we go!

After checking the calendar to be sure, I figured out that Mia’s last day of eye drops is today, not next week, as I originally thought.  After today, we are supposed to stop all 3 drops and hope for the best.  She has only been having the steroid eye drop every other day for the past 3 weeks.  We’ve also been continuing the dilating drops and the drops for her ocular pressure daily.  We are about to leave for a week-long trip, so hopefully no problems come up while we are away from home.  Please keep our girl in prayer that the uveitis doesn’t return.

 

UPDATE:  We went on our trip and her eye flared up again.  We had to see an eye doc in Galveston, pay out of pocket since our insurance wasn’t accepted there, and drive through a tropical storm to get to her eye appointment.  We promptly got her back on the drops, and her eye quieted back down within a week.  Now we need to figure out what other medication to try since the drops themselves aren’t working to get rid of the inflammation completely.

Progress Report

I can walk in sneakers without limping!  Today I walked a mile and my calf felt pretty good, except on the uphills, it felt a little tight and I had to slow down.  Four days ago, I walked a half mile and was pretty sore afterwards.  The other day I discovered that I can ride my bike pain free.  I’m still sore in the mornings, but after some stretching and massage, I can get around as normal around the house.  I’m back to cooking and doing chores as usual.  I will try out the elliptical trainer tomorrow to see how that feels.  I’m so thankful that after 3 weeks, I’ve reached this point already.  Yay for answered prayers for healing!  Yesterday, I walked down 5 flights of stairs in a parking garage with no problem (I took the elevator back up), I just had to take it slower than normal.  I will still have to stay away from high impact activity for a little while longer, but I prefer walking/biking/elliptical training anyways.

 

In Mia’s eye news, we are down to 3 times a day on the Prednisolone (corticosteroid) eye drops, still dilating 3 times a day, and using drops for her ocular pressure twice a day.  We have a follow-up appointment on April 14th.  Things are looking good.  After Friday, we will take the Prednisolone down to 2 times per day.

We are making progress, but now all 3 kids have colds, some with fevers.  Hopefully these colds will not linger for too long.

2 weeks post calf tear – Limping along!

I can limp without crutches!  Whoo-hoo!  I still need to use a crutch/crutches if I’ll be on my feet for very long, but it’s nice to be able to “walk” on my own again.  I’m still pretty sore and the muscle is still very tight, but I’m making some progress every day.  Keeping a compression bandage on has really helped.  I realized that I had been wrapping it too loosely, under the direction of the Nurse Practitioner that I first saw (“don’t wrap it too tightly” and she wrapped it pretty loosely).  Then over the weekend, we visited some relatives and Uncle Dan, the PA, wrapped it more firmly, but still not too tight, and that really helped with the pain and since then I’ve been making good progress.  I still can’t flatten my foot , but I’ll get there in the next week(s) or so if I keep working it.

The bruising is still purple around my ankle and bottom of my leg, but that is starting to fade finally too.  My ankle is a little sore, I assume from the bruising.  I’m still icing it, especially after being up for a while, and elevating it when I’m sitting.  I cooked dinner last night for the first time in a while.  That felt great, but I was pretty tired and a little sore afterwards.

I’ve also been able to start doing some light strength work with a resistance band and pointing and flexing my foot.  That also is helping with my flexibility.  No standing calf raises yet, but I’ll work my way up there.  Muscle tears are no joke!  I’ve lost a lot of strength and flexibility in that muscle and I know it will take a while to get back to where I was, but that is the goal.  After that, the goal will be preventing this from happening again by building more strength and increasing my flexibility.  I can hardly wait to be able to take walks around the neighborhood again!  It’s only 1.3 miles, but I know I’ll have to build back up to it.

Leg Update – 1 week +1 day after injury

About a week ago, I tore my right calf muscle.  I’ve previously pulled the same muscle (about 2 years ago)  and it took about a week for me to walk without a limp, then took a long time before I could do anything high impact.  This time, the injury is much  worse.  I haven’t been able to walk without crutches.  Some days I’m able to put a little weight on that leg (still with crutches), but other days, it hurts too much.  Bruising appeared a couple days ago.  I’m still icing and elevating it when I can.  It’s looking like a long recovery ahead of me.  I’ve been having muscle spasms throughout the day/night, sometimes painful enough to wake me up at night.  I’m on prescription Naproxen for the pain, and when it gets close to doseage time, I can certainly feel the pain getting stronger.   I haven’t been driving because it is painful to put pressure on the foot sometimes and I probably wouldn’t be able to do a hard brake if I needed to.

Getting around on crutches is pretty exhausting, and sometimes downright painful.  My arms are getting a good workout, for sure.  If anyone has any advice, I’d love to hear it.  I’ve started doing some massage on that muscle, and that seems to help temporarily, so that it isn’t as painful, but then the muscle spasms again, and I’m back at square one.  Too bad I got this injury in the Spring… the weather is so nice lately, I want to take walks.  I’d gladly be a shut-in during the winter time!  :) I’m hoping that eventually, I’ll be pain free enough that I can ride my bike while I’m still recovering.  That would still be a few weeks off, though.  This injury is no fun.  Make sure you take care of your muscles and stretch and warm up well.

Oh Wow!

Our family went to the Aquarium this weekend.  As we were walking through this tunnel and surrounded by cool coral reefs and incredibly colorful sea life, I heard a teenager behind us exclaim, “Oh Wow!!!…..”  At first I thought she was just amazed at all the beautifuls colors on all the fish or the coral, but she continued… “Oh Wow!  This is great lighting for taking selfies!”.  <facepalm>

Jamaica Agua Fresca

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.  :)

Making Progress – Birthday Blessings!

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!!!

It’s Baaaaaaack! :(

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.

I used to be addicted to soap, but I'm clean now.