Needles Don’t Scare Me

I’ve never been afraid of needles.  I don’t ever remember crying when I had to get shots.  I have to watch whenever I have to get my blood drawn, an IV inserted, or get an injection.  When I was a Medical Technologist, I learned how to do phlebotomy.  When I was little, my mom told me not to touch her sewing machine, but I didn’t listen and I got a needle through my index finger.  Even after that, needles don’t scare me.   I guess it’s a good thing that needles don’t scare me.

We learned today that Mia will have to add in another medication (Humira) that  is delivered by subcutaneous injection, and I will be the one to administer it to her.  For now, the injections only have to be every other week, and she will still remain on her Methotrexate prescription.  Results have been very good for a lot of kids who have had to resort to using Humira.  We are praying for the same result for Mia.  She is not excited about getting shots, but when we tell her about how she could lose sight in her left eye, I think (I hope) she understands why it is necessary.

We saw a new (temporary) Pediatric Rheumatologist today.  She was really great and spent the time to talk to Mia to explain things in terms that she can understand.  She expressed to her the severity of her disease , and the consequences of not getting her medication (losing even more sight than she already has, or losing it completely).

I went through a training with a nurse on how to give the injection, and we brought home a training kit with a spring loaded syringe with a covered tip so that we could practice.  We have to wait until our insurance pre-approves the medication so that they will cover some of the cost.  It’s a little insane how much it costs without any insurance or financial assistance.  Thankfully, we have insurance and the doc’s office gave us a card to receive discounts on the co-pay amounts.  It sounds like it brings the cost down quite a bit (1% to 10% of the actual cost), depending on how good your insurance is.  I know a lot of people believe that the pharmaceutical companies are only in it for the money, but this company seems to  really be trying to make sure patients who need this drug have access to it.  There are even cases where they provide the drug for free for those with no insurance and very limited income.

I need to vent a little (a lot) today.  It’s frustrating that we have to start up injections.  It’s sad that she has already lost some sight in her left eye… she is only 7 years old!!!  I wish she didn’t have  to get her blood drawn so often.  It’s so hard to see her struggling to read something and that she has to hold books so close to her face sometimes.  It’s hard when I see kids (and adults) staring at her, making faces, or pointing and whispering when she has to wear her patch out in public.  I hate that Uveitis can creep back up after things were going so well for a while.  The rollercoaster of emotions is exhausting.  It’s so annoying to have an alarm go off EVERY SINGLE WAKING HOUR (sometimes more often) to remind you of an eye drop.  It is so hard to second guess every medical decision you make on her behalf, even though you’ve done TONS of research on the topic and you and all the specialists are pretty confident that it’s the right decision.  There are a lot of hard things about her situation, so I try to constantly count our blessings so that I don’t start to only see the negatives.  Our reasons for thankfulness always outweigh the troubles!

We are blessed that we have access to modern medicine and that she hasn’t already gone completely blind in her left eye.  We are blessed that I am able to homeschool her, so we can keep up with medications and doctor’s appointments.  We are blessed to live near family that can watch my other kids so they don’t have to wait around at the rheumatologist office for 2 hours during her appointments.  We are blessed that Hubby has a great job that allows him to support our family, including the medical bills.  We are blessed that her doctors are all great (even the temporary ones) and spend all the time necessary with us instead of rushing through the appointment because they are behind schedule.  We are blessed that we have a very sweet, strong, brave little girl who doesn’t seem to  mind everything she has to go through, whom also all trusts in God and believes in the power of prayer, which always comforts her.  I’m thankful for all the answered prayers we have had on her behalf and for all those who faithfully keep her in their prayers.  We are blessed that the uveitis is only affecting her left eye.  Also, even though her symptoms of uveitis are sad (photophobia, eye pain, redness, etc.), it is a blessing that her disease is symptomatic, so we know when to take her in to the doctor.  So many little ones have gone blind even before the uveitis is discovered.  I am thankful that God is in control and He knows our needs.  I am also thankful that needles don’t scare me.

Philippians 4:6-7  ” do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”

 

New Puppy, Broken Wrist, Uveitis

April 2016 – We got a new puppy from a dear friend.  He is now 3-1/2 months old.  He is a fluffy ball of energy!  I have been wanting a new pup for quite some time, and my hubby finally told the kids and I we could have him.  His name is Wicket (like the Ewok – http://starwars.wikia.com/wiki/Wicket_Wystri_Warrick).

 

5/1/16 – Sean falls of a horse and breaks his right arm/wrist.  His foot got caught in a fence.  The horse kept going, but he did not.  He got the wind knocked out of him and fell on his arm, but is otherwise okay.  He smelled like manure at urgent care.  He said he thinks he fell in horse or cow poop.  Lovely.  He wasn’t really concerned about the deformed/broken arm, but he couldn’t wait to get home to take a shower.  🙂  The doc at Urgent Care put on a splint and referred us to an Orthopedic Hand Clinic.

 

5/3/16 – Our morning appointment at the Ortho clinic shows that Sean’s wrist is broken near the ends of the 2 arm bones.  The radius is broken clear through and the bone has become angled (about 40 degrees), hence the deformity.  The surgeon took a look at the x-rays and said it would be incredibly painful to try to reduce (straighten) the bone without anesthesia, so they scheduled him for surgery that afternoon.  We went in at 2, and around 4 pm, they performed the procedure.  It went well, but his bone kept wanting to pop back out of place.  They got it stabilized and placed another splint, and we had a post-op follow-up on 5/16/16 for more x-rays and a real cast.  In the mean time, to help prevent the bone from popping back out of place, they wrapped the splint with fiberglass (cast material) to harden it even more.  Sean couldn’t straighten his arm since the splint went up over his elbow.  I canceled school for 2 weeks while he couldn’t write.  It was a welcome break with everything that was going on.  This is one reason I love homeschooling.

 

5/16/16 – Post-op follow-up x-rays show that the bone has mostly stayed in place.  There is still around a 2 degree angle in the fracture, but that is likely as good as it will get.  It shouldn’t cause any loss of function or noticeable deformity. (Yay!)  Sean opts for the lime green cast, and we are happy to find out that he is able to get a short arm cast, which means no more sling and he can bend and straighten his right arm again!  He will be in his cast for 3 weeks, then another x-ray, and likely no more cast.  But he will still need to take it easy for another month after that for it to completely heal.

 

5/18/16 – Mia has a routine follow-up for her eyes.  She has been clear (no inflammation) since January 2016, and off the steroid drops since late March 2016.  Today her doc found another active flare (3+ cells).  With the active flare, we need to restart the steroid eye drops hourly  and the dilating drops 3x/day, and continue the 2 separate glaucoma drops.  We have another follow-up eye appointment in 1 week.  She also has a Rheumatology appointment on Monday, 5/23.  We hope to discuss what the next step is for treatment.  She has been on the max oral dose of Methotrexate, but it is still not completely controlling her Uveitis.  We will likely move on the weekly injections, maybe in conjunction with the MTX.

 

 

Mia’s Eye Files, Continuing the Taper

I have a 3 inch 3-ring binder where I’ve kept all the paperwork (doc’s instructions, etc.)  from Mia’s doctor’s appointments and prescriptions since she was diagnosed with Uveitis back in the Fall of 2014.  It’s just about full.  Supposedly, 3 inch binders can hold around 600 sheets.  She has been through A LOT in the past year and a half.  I call the binder “Mia’s Eye Files”.   We recently learned that Mia’s eye doctor will be leaving New Mexico.  We are bummed.  She is a wonderful pediatric ophthalmologist, and so great with kids.  So now, we will need to find a new Pediatric Eye Doc, and we still have no Pediatric Rheumatologist.  I’m thankful that Mia hasn’t had any arthritic symptoms.

As we continue to try to get Mia into remission from her Uveitis, today we are officially stopping the steroid eye drop (again).  She had her last drop yesterday.  We are continuing using 2 glaucoma drops  several times a day (for eye pressure) and a dilating drop three times a day (to try to break up some synechiae, where her iris is still sticking to her cornea).  She is on the maximum dosage of oral Methotrexate, so we are all hoping that it is enough to keep the autoimmune response at bay.  She had a scare a couple weeks ago that she might have been flaring in both eyes, but it turned out to be allergies and/or pink eye, and has resolved completely.  She currently has no inflammation in her eyes, but her eye pressure is still high in her left eye.  Also, her cataract is still growing.  The Doc said she will probably need cataract surgery in the future.  We are still patching her good eye everyday for 4 hours, and that is going well.  It has just become a part of life.  So that’s where we are right now.

We are holding steady for now and hoping she doesn’t begin to flare again now that we are off the steroid eye drops.  All the following systemic medications from here will need to be either shots or an IV infusion if the Methotrexate doesn’t work, so we are praying we don’t have to go down that route, but we will if it can preserve her vision.  Her vision in the left eye is now around 20/60 or 20/70, so she will probably need new glasses next month.  Please continue to keep her in prayer.  She is such a trooper, and really tries not to let things bother her.  Her last blood test was fabulous… no tears, and results look good, so her liver,kidneys, etc. aren’t being affected by the medication she is on.  Yay!

Uveitis + Cataract

We had a follow-up for Mia’s Uveitis this morning.  She has been on the steroid eye drop 3 times a day for the past week, and we are still tapering her off very slowly.  We are still dilating her eye 3 times a day , and she has been on her eye pressure lowering drops twice a day.   At the follow-up today, we learned that she has an early cataract developing in her left eye (the uveitis eye) and her pressure is still higher than it should be.  We now need to  increase one of her pressure lowering drops to 3x/day.  The cataract might be a side effect of the steroid eye drops, or due to the inflammation from the uveitis that we’ve been fighting for over a year now.  We are hoping that it doesn’t continue to worsen and affect her vision further.  We now need to increase eye patching of her good eye to 4 hours a day, instead of 2.   We will continue to taper down on her eye drops and hope that her cataract doesn’t worsen.  We are also continuing her oral Methotrexate and hope that will keep the uveitis at bay all by itself once we are off the eye drops.  If the cataract gets worse and affects her vision, it’s a possibility that cataract surgery will be needed in the future, but for now, we don’t need to worry about that.  I hope in the near future, the cataract treating eye drops are in clinical use and are an option for her if it comes to that.  They still need to complete live human trials, but they seem to work well for dogs and for human lenses in the lab.

This is not the news I was hoping to hear today, but we are fortunate that she didn’t have any sign of inflammation in her eye, and no cells present, and no flare.   I just wish she didn’t have the added problem of developing a cataract.   🙁

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.

Didn’t make it to 2 weeks…

It has been a little less than 2 weeks since her last eye drops and her left eye is pink again.  🙁  We have an appt with her eye doc tomorrow afternoon.  I assume we’ll be going back on the drops again temporarily, and will possibly have to make an appt. with the Rheumatologist to see if they need to tweak her Methotrexate dosage or anything.  We’ll see what they say… Feeling a little frustrated, but still thankful that her health is generally pretty good and no symptoms of arthritis.  I just pray that we can preserve her eyesight over the long haul.  Her eye looked a tiny bit pink the other day, but she said it felt fine and that she could see just fine.  I asked her about it again today, but instead of taking her word for it about her seeing clearly, I asked her to read me something.  I knew when she struggled with something simple, she was having problems.  When I asked her why she didn’t tell me right away that her vision was a little cloudy, she said it was because she didn’t want to have to go to the eye doctor AGAIN.  Poor gal… if I’m feeling frustrated, I can’t imagine how she is feeling.

Putting the drops away

I’m putting the eye drops away.  We are stopping Mia’s eye drops  today after a slow taper since late June.  She has been tolerating the Methotrexate very well since July, her left eye has been “quiet” since July also, and her eye pressure has improved.  We are hoping and praying that the MTX is enough to keep her eye flare free.  If her eye stays quiet while on MTX alone, then we can begin to think about tapering off the MTX.

Please keep Mia in your thoughts and prayers that she will not have problems going forward and that she will go into full remission from the Uveitis.  We’ve tried twice before to go off the eye drops, and her eye flared up again within 4 days to a week.  This is the first time we are stopping the eye drops while using Methotrexate, so hopefully this is the medication that will work for her.  Her vision is holding steady.  She still has scar tissue that is giving her an irregularly shaped pupil.  She also still has some band keratopathy (calcium deposits on the cornea that form “bands”, caused by the chronic inflammation), but thankfully it isn’t in her visual field so it’s not really affecting her eyesight.

I’m so thankful that with all the inflammation in her eye that she’s had in the past year+, her eyesight is still really good and I pray it continues.

14 Years of Marriage, 3 More Weeks of Eye Drops, and a Partridge in a Pear Tree.

Nathan and I are celebrating 14 years of marriage today.  14 years of fun, laughter, love, being nerdy together, celebrating birthdays together, and just sheer awesomeness.  <3

M had another follow-up today.  Her eye is clear, no inflammation, eye pressures are pretty good.  We are decreasing her steroid drop even more (every other day), while keeping her pressure lowering drop to twice a day.  Then in 3 weeks, we are stopping the drops.  We have a follow-up with the doc in about a month and a half, and as long as the Methotrexate is working, she should still be flare free by then.  Please pray that it happens.  It’s exciting, and a little scary at the same time, but I know God is in control.  She also has a follow-up with the Rheumatologist tomorrow, so hopefully that goes well.  She will be due for some blood tests pretty soon… not fun, but necessary.

We all went out for National Coffee Day tonight.  Thanks Krispy Kreme for the donuts and coffee!!!  You helped make our little anniversary celebration special (and cheap).  🙂

Eye Update – Things going well!

I mentioned in my last post that M would be starting on Methotrexate (oral).  She started at the end of July.  She takes pills orally once a week, then a Folic Acid vitamin 24 hours later.  We missed a dose the second week because she had some odd test results that made the doc’s office want to make sure she didn’t have a latent Tuberculosis infection… odd, I know, but a blood test came back + for Tb, so we retested with a few different methods, and it was negative.  I have no idea what would cause a false +, but it happens.  Anyways, after we confirmed M didn’t have latent Tb, we resumed her MTX.  She has been tolerating it very well… only a few upset stomachs here and there, but overall it has gone better than I expected.  M also learned that she can swallow pills with no problem, and without having to taken them with something like applesauce or pudding.  What 6 year old do you know of who would skip applesauce or chocolate pudding to take pills with just water???  Silly girl.  So At this point, we have weaned down on  her eye drops to 1 drop of steroid a day, plus2 drops of pressure lowering drops per day… Did you get that???  We are down to ONLY 3 DROPS… per day!!!!  2 in the morning, 1 at bedtime.   Whoo-hoo!  We have an eye appointment next week, so we will see how long we stay at this level, but the goal is to try to get her off the eye drops completely and hope (and pray) that the MTX is enough to suppress her immune system just enough to keep her eye calm and flare free.

It is SO NICE to not have to think about eye drops all day, let me tell ya!!!  She also had photos taken of her retina and optic nerve to make sure there was no damage or inflammation.  Everything looks normal.  The scar tissue that she already has in her left eye that makes her pupil an odd shape will stay there.  We are no longer dilating her eye twice a day… since it has not gone away by now, it is very unlikely that it ever will.  It’s not too big a deal because she hasn’t had any problems from it.  Her vision in her “bad” eye is 20/30, so we are thankful (and blessed) that the inflammation didn’t cause more damage than that.

So that’s where we are… she has a follow-up Rheumatologist appt next week as well.  I don’t anticipate any new news… it’s just a follow-up to see how she is tolerating the MTX, get prescription refills, and figure out when she is due for her next blood test.  We aren’t looking forward to that, but we know it must be done.  Thanks for all the thoughts and prayers, as always, and please keep them going.

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.