Saturday, January 29, 2011

Injection #2 and the ear infection

Well Thursday night was Bevin’s 2nd injection and I decided I would give it to her.  We planned to feed her dinner and then while getting her ready for bed I would give her the shot.  Well during dinner she went into melt down mode so Rich started getting her ready for bed while I got everything ready for the injection.

Getting ready to give Bev the shot

Putting the band-aid on

Daddy holding Bev

Bev falling asleep after her shot

I managed to suck it up and give her the injection and then she wanted Daddy to hold her and was asleep within minutes.  We have noticed the past few days she seemed to be walking better.  She still has the limp, but it didn’t seem quite as bad and she seemed to loosen up a little quicker in the mornings.

Friday afternoon I met with the Sacramento Region Arthritis Foundation and am so happy I did.  Eric and Kelly were great and we will get to include Bevin’s picture and story on some things for the walk.  This makes me look forward to May 14th even more!  I did find out however that Bevin’s Rheumatologist was the only Pediatric Rheumatologist in the Northern California area…I didn’t know this.  I thought he was just the only one for the Kaiser in Northern California.  Apparently there are some states that don’t even have a Pediatric Rheumatologist.  This makes me very glad Kaiser plans on replacing Sr. Stobie with 2 Pediatric Rheumatologists.

I also received an e-mail from Bev’s pediatrician letting me know that Dr. Stobie had officially retired and they have currently only filled one of the two positions for his replacements.  The one position they filled will not be filled until August…they are still waiting to offer the other opening.  Until then we will get to keep seeing Bevin’s pediatrician until a new pediatric Rheumatologist starts.  In the e-mail her pediatrician said he wanted to see her within the first month of February so we called to make the appointment and were able to get in the same day. 

It ended up being a little earlier than her pediatrician wanted to see her to follow up on her MTX, but it ended up being a good thing we went in.  Bevin had a fever and an ear infection so she had Amoxicillin added to her little drug cocktail.  Her pediatrician also noticed she seemed to be walking better…so I really think that’s a good sign to tell us the MTX is helping her!  Fingers crossed…

Thursday, January 27, 2011

Kids Get Arthritis Too Website

Bevin’s story has been posted on the Kids Get Arthritis Too website, check it out if you get a chance.

Tomorrow I get to meet with the Executive Director of the Arthritis Foundation of the Greater Sacramento Area. J

Friday, January 21, 2011

Dentist Office Breakdown

This morning I had to take Bevin into the dentist to have her chipped tooth looked at and see if they could smooth it out.  Because the dentist office may have to put you out, give pain meds, etc they have to have a record of medical conditions and meds the patients are taking.  The last time Bevin was at the dentist was in August of last year, she hadn’t been diagnosed with JRA yet.

So today while the dentist was going over what they were going to do to smooth out her tooth, they were looking at her record and said “no medical conditions, right?”; of course now I have to say yes to that question.  I told them actually she does have a medical condition; she was diagnosed with Juvenile Arthritis in November.  The dentist asked if she was taking anything, again I now have to say yes to this question.  I told her yes and let her know she is on twice daily Naproxen at 4ml and yesterday she started Methotrexate shots once a week. 

I don’t know what it was about having to tell the dentist that, but I just broke down.  I was completely calm yesterday when she had to have her first injection, but telling the dentist about it just pushed me over the edge.

The dentist, who has a daughter a little younger than Bev and is pregnant with a son and due soon, was so sweet and told me how sorry she was and patted my leg.

I guess you never really know when that’s going to sneak up on you…

Thursday, January 20, 2011

Bevin’s first MTX injection

After a lot of confusion, a ton of phone calls and a lot of help from Bevin’s pediatrician, today we had our appointment to learn how to administer Bevin's shots and give her the first one.

Bevin coloring while she waits

When we first got called back it was a little scary because we were taken into the room where they actually administer chemo and infusions.  The nurse first had us practice on a foam pillow a few times and then went over where we should and shouldn’t give the shot (location in the house), where to give the shot to Bevin and what to do after we administer the shot (disposing of the needle). 

Rich practicing on the pillow

After we each practiced a few times it was time to actually give Bevin the shot.  I held her while Rich did the “dirty” work.  She actually handled it very well; she did cry, but I think it was more because I was holding her so she couldn’t move than the shot itself.  When she calmed down and we were getting ready to start cleaning up to go we noticed the nurse had brought us a band-aid…she cried MUCH harder at the fact we put a band-aid on her than for the shot.

So Bevin will now officially get her shots every Thursday and we will see how it goes...I really hope this helps her…

After her shot

Wednesday, January 19, 2011

Emergency Room Visit

This past Monday night was a very eventful night for us…

I came home from work and picking up the kids and Rich was in our bathroom installing a new shower head.  I told Hayden to go to his room and take off his shoes and jacket and I picked up Bev and we headed to our room to see how Rich was doing.  I walked in and because I don’t make it a habit to look at the floor of my house (since I can get around pretty well by now) when walking, I didn’t see Hayden laying sprawled out on our floor (I was holding Bev high up and couldn’t see below her).  I tripped over Hayden and fell and on the way down Bev fell out of my arms and landed in an awkward position on her head/neck.

We immediately freaked out thinking she broke her neck, luckily that wasn’t the case.  But her cry was not her usually Diva cry, but more of a lazy cry and she started to fall asleep immediately.  We hopped in the car, dropped Hayden off with my parents and headed to the emergency room.  I had to keep her awake the whole way to the ER.  After we got there and she’d been seen by the doctor, he let us know normally he would do a CT scan, but he was reluctant to give that much radiation to someone who wasn’t even two.  So instead he decided he wanted to evaluate her for 3-4 hours.  We told him it was now past her bed time and mixed with the head trauma and being tired, we wouldn’t be able to keep her awake, he said that was fine, he would come wake her every hour.  She screamed bloody murder while Rich rubbed her back till she fell asleep on the bed out in the ER hallway.  At this point while the doctor was looking her over we also saw she chipped one of her front teeth pretty good and the way it broke off left the tooth rather sharp.

She FINALLY fell asleep!

Apx an hour later the doctor came back and attempted to wake her with no luck, Rich and I tried to wake her, no luck.  The doctor asked Rich to pick her up and finally she started to stir and open her eyes.  Within seconds she was falling back asleep.  We let him know that she has NEVER been this hard to wake up; with that information the doctor decided it was best to do a CT scan.  So the nurses walked us to the CT scan area and took Bev behind closed doors (so they were the bad guys and we could “rescue” her when it was over) and did the CT scan.  As soon as we were taken back to her hallway bed she was back to her old self!  Climbing all over the bed, making Rich walk up and down the hallway with her, entertaining other patients as well as the security guards and even coloring in the coloring book a security guard gave her.  Maybe all she needed was a little radiation?

Sunday, January 16, 2011

Arthritis Walk-4 months and counting

Now that Bevin has arthritis I am trying to become as active in this “community” as I can.  Because of that our family will be participating in this year’s Arthritis Walk:

We have started a team, Run Bubbas Run, after the stuffed rat and blanket that Bevin carries everywhere (which she has named Bubbas).

Bevin and her rat, Bubba

If you would like to participate by joining our team and walking with us, donating to the cause or just helping us spread the word you can view our team page by clicking on the below link:

Wednesday, January 12, 2011

The new "Game Plan"

Today we went to see her Rheumatologist for her 6 week follow up…good news is her currently affected joints aren’t worse; bad news is they aren’t better.  It also looks like her elbows are becoming a problem.

We went in for her labs last Friday and her Sed Rate was down to 30 (from 38) and her platelets were down to 506 (from 560), so contrary to my belief the Naproxen is doing something, just not enough.
Bevin being nosy while waiting for our appointment to start

So this morning, after getting called back to our appointment a half hour late, we have a new “game plan”.   After going thru all her joints again he reviewed her labs and let me know the Naproxen wasn’t quite doing what he hoped it would and we needed to go over our other options.  He went over all of the drug options out there and their side effects, recommending Methotrexate (MTX) as his #1 choice, which after the research I’ve done and what her pediatrician told me, that seems to be the most common. 

The main side effects we discussed were:
1.      Nausea/Vomiting-he said this occurs in 1 of every 10 patients and said he sees it more commonly when taking the MTX orally.
2.      Mouth Ulcers
3.      Hair Loss-he said this happens about 1% of the time and is reversible.
4.      Birth Defects
5.      Liver and kidney damage
6.      Lung damage-he said this is rare in children and seen more commonly in adults, especially ones that have smoked.
7.      Possibility of cancer down the road

The MTX comes orally or injectable; due to him saying he doesn’t see the nausea as much in the injectable, and because we’ve dealt with insulin in our household (I had gestational diabetes) I felt confident we could handle the injectable version.  He is also upping her Naproxen from 3ml to 4ml; little does he know that per her pediatrician’s recommendation after she was on 3ml for a week we went to 4ml, so she’s actually been on the higher dose for 5 weeks.  Since he’s retiring I didn’t feel the need to tell him I went behind his back and got another opinion, we won’t be seeing him again anyway.
She couldn’t get out of there fast enough

So one more week on the just the Naproxen and then next week we will be adding in the MTX injections once a week.  We will be changing her lab work from every 6 weeks to every 4 weeks while we find the right dose of MTX for her.  Once she’s on a stable dose the labs will be done every 3 months.  We will also continue her Ophthalmology appointments every 3-4 months.

I knew the MTX was the next likely step for Bevin between researching, talking with other JRA parents and speaking with her pediatrician, but I still cried on the way home.  It just makes it so much more real that we are in this for the long haul…
Crashed on the way home

Friday, January 7, 2011

First Labs

Well today Bevin went in for her first lab and urine tests…let’s just say that was a treat. Apparently the lab doesn’t carry the pediatric urinalysis bags and the Doctor who ordered the labs was supposed to provide us with one to take home…which he did not.  Luckily the lab tech that was waiting on us was very sweet and called down to the pediatric department and was able to get a nurse to assist.  So Bevin and I trooped down to the pediatric department and a nurse taped the urine bag on and kindly cut a hole in her diaper so I would be able to see when she peed.   

Then I got to carry her, pantless, back to the lab so they could proceed to poke her with needles.  Bevin’s hands were extremely cold so they tried to warm her up with hand warmers, which she wanted nothing to do with.  Because of that it took awhile to get all the blood they needed and she SCREAMED the entire time, it took two lab techs and me to keep her still.

They had hoped that she would pee while having her blood drawn, unfortunately that didn’t happen so they provided me with a specimen cup and sent us on our way.  As we walked out the door Bevin said “bye bye” to everyone, she couldn’t wait to leave.  As soon as we got home I took off her pants so I could keep an eye on the bag and would know as soon as she peed.  As soon as the pants were off I saw that the bag was full!  She really does do things on her own terms.  So we put the bag in the specimen cup and headed back to Kaiser to drop it off.  Luckily Kaiser is right around the corner.

Monday, January 3, 2011

Today's Doctor Appointment

Bevin had an appointment today with her Pediatrician to look at her ear and feet and see what was going on.  We’ve been putting OTC creams and lotions on the affected areas, but nothing is clearing up.  It looks as if what’s behind her ear is Refractory Eczema (hard to control eczema).  She now has some prescription strength hydrocortisone cream which will hopefully clear it up.

It seems the peeling on her feet is associated with her JRA and seems to be flaring up when her JRA does.  We actually first noticed her feet around late May of 2010; we brought her in to the doctor for it on 06/15/10 because we thought it was athletes foot that wouldn’t clear up.  Her regular pediatrician was out, so we saw someone else who told us it was an allergic reaction to the plastics in her shoes and that you couldn’t get athletes foot until you’d hit puberty.  Of course changing her shoes and using athletes foot cream were of no help.  This also leads me to believe her JRA started back at that time.

After reading some other blogs and the situations people have had with doctors (finding one that is understanding, works with you, etc), can I just say I am more and more appreciative of my kid’s pediatrician.  Dr. Cutts is absolutely wonderful.  When he walked into the exam room today he told me “I know you are here for her ears and feet, but how is everything going?” and then sat with me for about 20 minutes listening to my questions, concerns, etc.  He is not her Rheumatologist, but he allows me to call or e-mail him with all my concerns about Bevin’s diagnosis.  If I haven’t liked the Rheumatologists method or answer, I can ask him.  He has been completely forthcoming that Rheumatology is not an area of expertise for him, but he answers everything to the best of his ability and I feel like he truly cares about Bevin.  He provided me with some info on the new Rheumatologists coming in once the current one retires (they are both from Oakland and will be purely Pediatric Rheumatology, apparently the current Peds Rheumatologist sees Rheumatology patients as well as regular Pediatric patients.  Not that being a specialist and non-specialist makes him better or worse, but the two new specialists will not see anyone except Peds Rheumatology patients because they are purely specialists and not PCPs).  He (Dr. Cutts) also informed me that out of all of his patients he only has two with JRA, Bevin being one of them.  The other is a teenager who was not his patient when he was diagnosed.  This makes me feel like Bevin has a little place in the back of his mind being the only infant JRA patient he currently has.

Dr. Cutts also went over some of the other drug treatment options as it’s been 4 weeks and the Naproxen still isn’t having any affect.  Because he isn’t the Rheumatologist he will not be the one to move her to a different drug, but he knows I am concerned about the Naproxen not working and wanting to know what the next step is.  There aren’t any in-between drugs between the Naproxen and the more serious drug treatments for JRA.  He informed me the most common “next-step” would be Methotrexate (MTX) which is used in the treatment of Cancer as well as autoimmune diseases.  It’s scary to think Bevin may end up on a Chemo drug for arthritis, but based on all the other JRA kids/blogs I was able to find, this seems pretty common; steroid injections are also a possibility.

And rewinding back to Thursday night (12/30/10) we had a slight glitch.  Our brand new (less than two weeks old) heater decided to stop working, putting our house at 60 degrees and it was only 7pm.  Because the cold stiffens Bevin’s joints that much more, not being able to keep the house warm was just going to make it worse.  Luckily my parents live a mile or two away and we were able to drop Bevin off for a last minute sleep over with her Nana and Papa.  The HVAC install guy came the next day and was able to fix it (apparently it wasn’t draining properly and due to all the condensation the new system produces, with the extra water build-up it wouldn’t allow itself to turn on).
 On our way to drop Bevin off with Nana and Papa (who have a working heater)

Bevin’s also had some bruising on the inside of her left foot, but it doesn’t seem to be too significant and seems to be gone by the end of the day (althou it’s usual present again in the morning).

On a Hayden note, today he was moved up to the next class at his preschool, as of today he is officially a "Square" (he was a "Triangle").  Yay Hayden!!

And so this new year starts our new adventure…

I hope everyone out there had a wonderful New Year’s!