Feb Infuse

We had a another infusion.  Labs look great.  Gary is doing good.  This infusion was a little rough.  The benadryl and tylenol wore off at the end of the infusion.  He started crying and got those little red hives on his chest arms and back.  The steroids are making him unpleasant.  I got socked in the nose twice yesterday.  What can you do.  

This is the part I am surprised hasn't come sooner.  The part where this whole thing isn't new to anybody.  The part where everyone seems to go on with things.  The part where it becomes normal.  I don't want it to be the normal but it has too.  It's amazing to me the emotions I go through STILL with all this.  I still want to feel upset especially when things change or after an infusion.  It's the part where you yourself to battle through.    When life goes on.  It feels like going to the doctor, and accidentally being left in the exam room.

CLINIC/X-RAY's/Hate JDM

We had our clinic appointment.  I love my blog!  I don't care if no one ever looked at it.  I mean, it is nice to keep everyone updated but really this is an outlet for me (in addition to running, wine, and talking to my sisters).  I saw someone had posted that people keep blogs to make themselves think someone else cares.  Well, so be it :)  LOL.  I instantly laughed at that remark.  Life is a matter of perspective.   If you can't see perspectives, life tends to be a bit more difficult.  That comment was made by a person who most likely has never been in a situation that solicits hurt or difficulty with there children.  There is a desperation that comes with the process of dealing with this.  The desperation to get rid of the feelings that twist our hearts as mothers.  Ok blah blah blah
s o r r y  Speaking of heart twisting.

Gary has been good.  ( I think I say that every time in effort to paint the full picture )  Gary had another good response with Rituxan up until about Monday.  I was ready to go in to the doctor to say, "I think we should lower down on the steroid again, he has been doing great."  Sunday, however, I noticed he was wearing purple eye shadow.  For a split second I began to search for a particular color in my make up to see if it was there.  Then I stopped and looked closer.  That's not purple eye shadow.  I asked him if he "bonked" his eye.  He said no.  HELIOTROPE  A rash children with JDM get.  A rash he has had before and it's back.  His cuticles this past month had been great.  Before you could see with the naked eye capillaries that were bursting and bending. They were looking beautiful.  I couldn't see a thing.  Until Monday morning.  With just a flash light I could see activity again.  The roof of his mouth has a few purple dots as well.  Monday I was upset and anxious after discovering this.  I couldn't wait for Tuesday to get to his appointment to speak with the doctors and share my frustration.  It lifts you high when you look into your three year olds face and see that normal boy.  No signs of a disease.  Then in one day to turn around to see that face going away and being replaced with purple and inflammation.  The very thing  we keep fighting and fighting.  *If our doctor ever finds the way to my blog, I don't mean to offend anyone* BIG BUTT, I didn't like what she had to say.  I don't agree.  She said she thought his cuticles looked better.  She even handed me the light to look for myself.  I HAVE SEEN THEM!  I took it and looked and thought they look like CRAP.  So the whole twist to the appointment was that Gary has sprained his wrist the night before playing with his brother and sister.  He get complaining and complaining about it.  We were sent to X-Ray because he was getting more and more uncomfortable.  So we wrapped up the appointment and got down to X-Ray.  Just a sprain : ) I am left with rationalizing everything.  I don't know what is causing me to so very frustrated.  We are still a few months off from hitting 2 years worth of treatment.  2 years is not guaranteed.  There are patients who are on medications for years and years.  It's funny you go along fine.  "How's he doing?"......"Really good, thanks"......Then like my sister said to me yesterday, some days, its like I am finding out for the first time.  Like yesterday was the first day I found out my kid has a disease.  I know it is from going along saying "shruggs" we are getting use to this now.  We except it is apart of our life, and we just need to deal with it.  NOT TRUE.  It will sneak in and shove you down.  I trust God with all my Heart.  I trust He gives me these feelings so I am the best that I can be.  If I didn't feel and deal, Gary would be at risk for not getting the care he needs.  I would to sit there and argue with the doctors.  But there is no use in this strategy.  The doctors are human.  Gary's disease and his body are going to do what they are going to do.  *Razzing* the doctor and arguing doesn't get anywhere.  I do advocate but that is a art form in itself.  There is a time and place for everything.

CALCINOSIS

Still has it.  The large one on his arm has gone down finally.  It is a small lump now instead of a large one.  I think that if they could see all the calcinosis through out his body, they would be surprised.  No one takes the time to really explore it because there is nothing they can do about it. 

IVIG Infusion January is in the Books

Gary is doing good.  We had our infusion yesterday at the Seattle Campus at Children's.  I went ahead and tried the sedation again,  one more time.  I was curious to see how it went.  He slept.  A lot.  Lately, sleeping as not been something he does a lot of.  So when the lorazapam hit me, it worked well.  We slept thru the whole iv prep.  We thought we were about to get an iv while he slept but as soon as it hit the skin, he woke up.  Unfortunatley I didn't have a good hold of him.  Our nurse, SUPER GREAT but pregnant with twins due next week.  Hello?  She tried but she was challenged with size.  The size of herself that is.  He jerked back pulled the iv out then it quickly went in for a 1-2 poke.  It was a no go.  The nurse went past the vein because he was jerking back and forth.  We tried the other hand, nothing.  She finally got it in the crook of his arm.  I thought about it afterwards.  How would I like to wake up to someone poking a giant needle in the back of my hand.  Well,  I wouldn't, and would most likely be pretty ticked off.  So after 3 or 4 pokes if you count the first poke as two, we were rolling.  He went into a coma.  He slept through the whole infusion.  It went smoothly.  Woke up hungry, and grumpy.  On the way home, he had a serious chocolate fit.  MUST HAVE CHOCOLATE.  I actually had to stop and get some.  He deserved it.   His labs look great.  His clinic appointment is Feb 8th.  His hoarse voice issue seems to be backing off.  His thrush is getting better but very slowly.  The nurse said I should check back with the pediatrician because we have been treating it since Jan. 4th.  It is better however, so in the next few days if it doesn't improve further, I will give him a call.  He did say at his appointment however, 'as long as it takes'.  Gary does have a cough that returned but I don't think it is really serious.  Post nasal drip and a cough.  The calcinosis on his arm has changed.  It is less angry and going down but I am not sure what to expect or what it even means when it does that so we shall see.

You're Beautiful Today (Erin's Song)

Not Again

Just last night has we sat in the parking lot of a walk in clinic for Daddy who has a nasty nasty case of bronchitis, I was sitting there thinking I was glad the Rituxan seemed to stop the weird bouts of tummy bugs or what we thought was a bug.  I thought to soon.  Hours later, as if Gary's was trying to tap into my maternal conscious to tell me he was going to throw up all over my bed last night.  I got the wrong sub conscious message.  I am so very tired of everyone being sick.  Elexis had a run in with fifths disease.  Turns out she came down with  pneumonia.  Daddy has been hacking and I truly can't remember what he even looks like because he is always in bed.  He even stayed home from work today and he never does that.  I have managed to not pick up anything I don't recover from quickly.  I am sure my turn in coming but I plan to keep battling back with running to  "run away" from the germs.  I have been bathing the house in bleach.  I will continue the great germ fight.   So back to the barf.

Nov. 13
Nov. 16
Dec. 9
Jan. 10

Stomach cramps and vomiting.  Nothing from down under however this time.  Just bad tummy cramps.  What is odd is that Gary isn't in preschool.  I know the kids go to school and can bring stuff home but wouldn't they bring has in getting it first, then passing it to him?  The dates are all around the same time of the month.  I got it!  It's menstral.  Oppp, three year old boy, not possible I guess.  Huuuummmmm.  Allergies to food.  Well lets see yesterday he had mixed nuts, blue berries, celery, peanut butter, a small snicker bar (nicka bah), refried beans, brown rice, corn chips.   I do not recall what he ate the other dates,  but for documenting purposes I will start for the next time it happens.  I suppose I should keep a daily food journal.  Now, I could call the rheumatologist and let them know it happened again.  I don't think it is necessary just yet.  If he didn't recover so quickly (by morning), I would be more concerned.  But since he woke up and asked for a tuna fish sandwhich and hot cocoa, then I would worry more.  But then again, that makes me worry more because if it was a viral thing he would take longer to recover.  It clearly is his stomach cramping.  Because he cries and tosses and turns, then barfs, repeat throughout the night.  I really don't want him to have some invasive test that won't show anything.

New Year: Dodging sickness

We have seen the pediatrician more than once this week.  Gary came down with thrush.  Rheumatology said to take him to his regular pediatrician, whom I love!  Then Elexis was in last night.  We had separated Elexis and Gary because Lexi was exposed to Fifth's disease.  I mentioned this to our doctor.  He advised if it was possible to keep them far apart.  So Lexi has missed a whole week of school.  She stayed with her Aunt and Uncle a few days but starting getting worse.  We were concerned she was showing signs of getting Fifths disease, but it actually was walking pneumonia.  Now she is under quarantine in her room.  They put her on a mean antibiotic and an inhaler.  Of course when you tell her three old brother to not go in her room, opposite day is in effect.


CALCINOSIS

So this is what calcinosis looks like.  It only hurts if it is bumped or if he is putting on a jacket.  It was funny he let pediatrician mess with it.  He was strangely cooperative for him.  He is getting more on his bottom around his tail bone.   I don't post these to make anyone feel uncomfortable.  I do it to show other families what to look for and to document.  I wonder if this was actually a molluscum until I got onto another families site.  It look exactly like their daughters calcinosis.

 

A New Year

What a year!  I can say it was full of blessings.  We are looking forward to this year as well.  Christmas was wonderful.   I mean I must have been a really good girl!  We had our infusion a couple days after Christmas.  It went good.  We got our own room because Gary has had a cough for awhile.  Poor guy had to have a nasal swab,  and chest xray to check for viruses, ect,.  He was in the clear, but at least it got us our own room.  The nasal swab was pretty bad.   They stick a small tube to suck out mucus from your sinuses.    Ouch.  Gary responds very well to the Rituxan.  He looks beautiful.  He does have a calcification that is coming thru his arm.  It started several days ago.  As long as we don't accidentally touch it, its ok.  I hope the rest of it doesn't start doing that.  That will be tough.  I can't believe in 3 months Gary will be 4 years old.  He is turning into such a boy.  I am so grateful for God's protection and blessings he gives us.  This year we are looking forward to stepping closer to remission. 

Pictures from Christmas

Merry Christmas

Merry Christmas to everyone.  The Rituxan went good.  Gary didn't seem to have any ill effects from it.  We are scheduled to go back in for our second round on Monday.  Gary will be there overnight.  Hopefully we will get our own room, but most likely not.  Last week it was interesting.  We got check into our room and the patient that was already in there immediately complained.  I was a little shocked.  I told our nurse, who I could see right through and knew right away when that mother popped up out of her bed and headed straight for the nurses station that she was going to protest.  Her daughter was older (13 maybe).  I get it.  Gary is chatty.  But the part that floors me is the less than ideal rooms we have been put into over the past year and half, including being accidentally stuck in with a contagious patient.  I would express my displeasure, and not once did they move us. OK once, it was when we were in with the poor kid who was having loud psychotic hallucinations about The Grinch.  That time I didn't ask they just moved us.  I so badly wanted to ask that Mom what she said.  I also know however, the nurses were not happy with her.  It came up several times because we moved rooms certain things were still back at the original room.    Anytime it was mentioned a certain regard came off of each nurse.  The upside was we did get our own room for awhile.  We also had a window.  Down below our view included the Seattle Fire Department practicing drills on the vacant condo's below.  Yay for the Children's Hospital Expansion!  I pray that no patients will have to share a room again.

Gary is looking pretty good.  I thought earlier in the week that some of his calcinosis was coming through his skin but it ended up being a infected molluscum.    I do think it has calcinosis under it but I was kind of upset there for a few days wondering if this was the start of the pain of these popping through.  The dermatologist has stopped treating the molluscum.  He did recommend trying an online remedy, Molluscum Rx.  It's a little pricey so I am not sure.  One of the things I have started to consider is a gluten intolerance.   I struggle with this because I do.  It will be hard.  But I figured I will talk to the doctors and see what they say.  I guess the reason is because so many times I have been offered advice about Omega Three, fish eyes balls, things of that nature.  It has all been taken with appreciation. However.  This disease is serious.  It can be compared to cancer in my opinion.  My mind is closed to any kind of natural care and things like that.  What if I did and his disease advanced?  What if it didn't work?  There is a person on a support board who is always pushing some kind of product.  He pushes it to the point it is offensive.  Asking us parents 'how dare we not explore other treatment and put the terrible drugs into our childrens bodies when he has found something that works', not a direct quote but it is how he made me feel.  What if we all followed what you were insisting on?  This disease proves that no ones is the same.  Each case is a little bit different.  Each patient responds differently to each medication.  I understand you would want to share what worked for you.  I would too.  But to play upon the fear in parents is crude.  And what every patient did what you are so passionately pushing or "selling".  I can guarantee a lot of children would have disease progression along with all the complications that come with JDM.  I suppose it is all about approach.

I know I need to open my mind more.  I also consider that fact that this isn't my body.  It is his.  It's Gary's.  It may be a little different or maybe something I would try if it were my own.  But Gary would have to live with whatever decision I make for him.  He already does.  What hard way.

We are blessed : )

Merry Christmas to you!

Merry Christmas Summer : )

Rituxan is Running

The back to back stomach bugs aren't a good thing. Obviously.  They had us come in today for a clinic appointment this morning.  It was decided on Friday to go ahead and run Rituxan again.  So we are here overnight getting a Rituxan infusion.   Labs don't always tell the whole story.

Christmas is almost here?

Ring Bearer at Aunt Amy's wedding. 

Wow time is marching.  We had our clinic appointment last Tuesday  and our IVIG infusion the next day.  The clinic appointment went fine.  We are keeping all medicines and doses the same for awhile.  I would describe it as a holding pattern right now.  Just waiting to see what happens.  The doctors and I agree.  Not good enough to stop steroids.  The inflammation is just there still.  Despite really great labs, I can't confidently say were good to go down.  The infusion was a little rough.  This time we tried new things.  We tried a little sedation for the ride in and for getting the IV.  Several reasons this was no good.  He couldn't walk into the infusion center on his own.  He fell of the scale when being weighed.  It did help with the IV start, but he still cried, just cared less.  As soon as they ran the benadryl thru his IV, he was furstrated.  It hit is balance hard.  He was out of it and could not stand up on his own.  It was too much.  Feeling icky and sick like that was not what I had in mind to make the IV go easier.  The next 3 days proved to be difficult as well.  That night he cried and cried and cried.  He was in complete misery over everything.  Uggghhh.  Forget it.  No medicating for IV's.  We will just have to find other means to cope.

The other new thing we tried was the infusion center.  We were booked into a new infusion center which was off campus of Children's Hospital.  We only had to go to Bellevue.  I liked that is was closer, quieter, and new.  I didn't like they didn't serve lunch.  It didn't hit me until we pulled up.  I am more than happy to pack a lunch for next time however.  It was also nice because we had the place to ourselves which meant we almost got the nurses full attention.  They were great.  One of them sat with Gary while I went to get him food for lunch.  They had a movie on demand system which was good, but once we got thru all the movies, he got restless.  Of course he fell asleep at the end.  For the first time in a year and half, after countless infusion, Gary did not wake up while having his IV removed.  Sedation gripped him hard.

LABS
Last month I had asked for them to check his B cell count, to see if those cells responsible for inflammation were coming back yet.  If they were, then Rituxan would be given again.  They had explained it was still to early.  I told them I wanted them checked because there was a overall inflammation I keep noticing in his hands, face, and skin.  They went ahead a checked them this month.  They are indeed back.  So in a few weeks we will be getting another round of mice medicine.  (I call it that because Rituxan has mice dna stuff in it. I know gack) .

TUMMY BUGS
Last year we made it thru the flu season with flying colors.  Nothing.  Gary did not really catch anything.  This year is proving to be different.  I wonder if it is because I am becoming a little more relaxed with his exposure or what.   Nov. 13 he threw up and was sick.  Recovered quickly.  3 days later another round of throwing up hit him.  He once again, recovered quickly.   Dec. 9th (Last night), he began throwing up again with tummy cramps.  That makes a three peat.  Hmmm.  I did have a little run of it a few days after he did last month so I was sure it was a tummy bug.  But 3 times now for him.  The good news is he seems to recover quickly.  Both times he has held down his important medicines so no hospital visits.  I knew yesterday something was up.  He was quiet and complained of a headache.  He did the same thing last month as well.  I few days before, I knew something was wrong or brewing because of his behavior.  Poor little boo boo.

Snow Tires

I think this is in the running for our Christmas Card.

Half

I wanted to pop in on Gary's blog and put an update.  He is doing good.  Remember my color scale I posted couple months ago.  Well lets bring it back.

Excellent

Great

Good

OK

Not Good

Poor

I think I will leave it at where it was back then as well.  I am still not convinced.  I see small signs like all the sudden he will look like he is sun burnt.  November in Washington, that is not possible.  It is what his skin did in the beginning when he was first diagnosed.  I have blogged about this before that yes we have been to not being able to walk very well and not swallowing, to recovery in that aspect.  But in the aspect of being close to finding Gary's magic drug combination,  NO, I am not convinced.  Last week Gary was acting a little off.  It is hard to keep a three year down.  He often has amazing energy so it is very noticeable when that energy diminishes even slightly.  Last week I noticed.  There was something about his face.  It was in his eyes.  It was being asked to be carried.  He was more red than usual.  Saturday it all came to a climax.  On a personal note it was very climatic because my sister's 40th surprise birthday party was happening.  Auntie Amy had said those very words.  "Watch, he is going to be in the hospital during the party".  Saturday, he began throwing up.  He was with Daddy.  I told Daddy to get him home as soon as possible so I could leave the decorating and come evaluate him.  There he was, white and uncomfortable and throwing up.  He also had gotten gum in his hair right before he got sick so he was quite the sight.  He threw up twice while I was home.  I called rheumatology to see what I needed to do.  They told me if he didn't keep his steroid dose down,  he would need to come in for a pulse.   She told me to try sooner than later so we wouldn't need to come in late.  We gave his steroid and he fell aspleep.  Daddy stayed home with him and I went to the party with a cell phone on my hip.  All my family and friends were there.  I was a zombie.  I could barely think.   I love my sister dearly.  We put a lot of work into her party, but I just wanted to be home with him.  But he was sleeping and fine at the point.  I planned to go home when he woke up in case that steroid came back up so we could go and to the ER and get the pulse.    Thank the Lord it stayed down.  He woke up feeling much better.  He started eating and was playing the Wii.  The rheumatologist called on Sunday night to check on him.   I thought that was very nice.  So he has since recovered.  But WOW I was hard to keep my head in the game.  Being around friends and family helped a lot though.  It is nice to be around people who know your worry because they have the same worry.  

He is doing fine now.  But something was brewing last week and it was written all over his face.  What is curious to me is that no one else has gotten sick.  So determining whether or not it was in fact a stomach virus, or his JDM is on my mind.  In September when we did go into the ER and he was throwing up with a fever, it was in fact his JDM.  Although he did not run a fever this time nor did the calcinosis inflame this time, I wonder what it was.  He recovered quickly, just like he did in the hospital in September.  The calcinosis seemed to be backing off but last week I noticed it increase in size in some area's, like on the inside of his arms.  The skin around those particular calcinosis sites look ominous.  But we will see.  I feel like we are at least in control somewhat.  I guess.

CLINIC

I have spent the past two days on 1-405.  Every time you make a turn there was an accident.  It was maddening. I had the urge to go on a family road trip.  A get a way with the family of sorts.  We have all been in a bad mood for some reason.  Yeah, well, my urge was cured over these past two days of sitting in the car with Gary.  Screaming and kicking the back of my seat.  I am not a nice person when returning home.  Everyone runs and hides.  When the door swings open to my house and step through the door, light flashes, and thunder rumbles.

The appointment went fine.  The doctor like the drug combination we are on and has a good feeling about it.  I was honest and said I didn't agree just yet.  Gary had fallen asleep on the way there.  He woke up with hot, itchy, red skin.  His cheeks looked like we had just come in from the sun all day.  His finger were red and inflamed.  I was not happy that he was doing that, but glad the doctor could see it first hand.  In the back of my mind I was expecting to fight off more tapering.  Meaning I was waiting for her to say, lets go down on the steroid again.  But she didn't.  I was able to tell her though that is why I called from the infusion center yesterday to have the Rituxan levels checked.  She said it was much too soon. I figured but needed to cover all the bases. Really, Gary isn't doing bad.  BUT its the same old same old.  I can tell his disease is really angry about all this immune suppression and drugs it is trying to be stopped with.  As always, metaphorically speaking, we are throwing dirt on a big bon fire that refuses to go out.  It's smoking and hot in the middle.   When she asked me what I thought, I grabbed my head and said, "you know, I want to give the Tacrolimus more time.  I don't like the fact he is doing what we did in the beginning.  The sudden onset of red, crazy, itchy skin and swelling."   I continued to explain that I know we have come a long way, but I am not sure.  The only time I was so excited was a couple months ago just after he had his first dose of Rituxan.  That was short lived.  But its hard work.  Only time will tell.  It's a fun thing to sit on.

We chatted about Gary's rage.  She said and I quote, "He has been through a whole LOT. A LOT"  She was sympathetic and suggest we get a punching bag to channel his aggression.  Hmmmm.  I like that.  It's worth a try. Gary, your sisters nose, NO, punching bag, yes.  Don't get me wrong.  I don't mean to paint him out to be a monster.  He is very very sweet.  But he is three and has unpredictable actions occasionally.  But Hey, don't we all.  We also talked about the Child Life Specialist.  We are going to try giving him some Adavant for next months infusion.  It helps him chill and will take the edge off.  I don't want to give him another drug of any kind, but I don't want him to be an axe murdererererer either.   So.


We then talked more about the calcinosis.  The only thing I can do about that is make sure she feels it and is monitoring it.  I told her it is unnerving for me to feel the calcinosis, especially on the inside of his thigh were it is much bigger and feels bigger and meaner than around his chest and throat.  I maintain as long as it stays where it is.

We had a med change.  One for the itchy skin.  Trying a different one to see if it helps.  My favorite was, "itchy can be caused by anything."  TRUE.  But not AS MUCH when you have JDM.

Hook, Jab, Bob.  Keep fighting!

October's Infusion

Wow does that four weeks between infusions go fast.  It started yesterday with the Teddy Bear.  I got a call from the Child Life Specialists letting us know she was going to meet us here.  She asked if we had been doing any medical roll play.  Inserting a fake IV into a teddy bear's hand.  I told her no because I don't want to remind Gary until it is necessary.  There is no reason to bring it up mid month.  I mean I could, we just deal with enough with the medicines.  So yesterday we spent the day putting in Teddy's iv.  Did it make a difference.  Not getting here.  It didn't stop the tears.  I practically had to drag him this morning.  My hands are full so it hard because he likes me to carry him.  He gets in front of me and puts his hands up to stop me from walking in.  He stayed outside.  He wouldn't come in.  I dropped everything I was carrying to go out and get him to bring him in.  Big Aligator tears.  Childrens is usually very quick.  Luckily today they were.  I have been practicing distraction technique with him which seems to work very well right now.  A cool toy, fun bubbles, whatever it takes.  It is amazing how many people step in when the IV is about to be inserted.  This time Gary sat on my lap facing me so we were face to face.  It worked very well.  He still cryed but was again distracted with our faces in each others. The Child Life Specialist got his attention a few times with play dough.  Our neighbor (another parent) blew bubbles, those ones that don't pop right away.  He liked those.  So we will keep working the distraction technique. Once he gets bigger I want to get him a pair of those virtual glasses you can play a movie in.  I had posted about those before. 

*Thank you to the nurse who suggested he be Buzz Light Year for halloween.  It worked well, it really did.  but I don't have Buzz Light Year in my arsenal of costumes.  LOL  I looked at her and in a joking manner said, "what do you think your doing".  We laughed.  Such wonderful people.

So the IV is in and he is sleeping.  I asked about running labs to see if his body is making the b-cells that are responsible for inflammation that were killed by the Rituxan.  I asked for this because of the intense itching and skin activity.  The nurse was awesome about it.  She got Rheumatology on the phone.  Of course I got the new fellow.  He asked what was going on.  He is very sympathetic and said sorry we were still having trouble.  I told him my concerns were minor but warranted.  It was very nice because the last fellow was very non chalant about my concerns which got to be frustrating.  I can tell this one is knew but at least he talks it out with me all the while keeping in mind I am a Mommie.  I am not sure he fully understood what I was asking for.  I am sure he understood but he needed to hear himself talk it out.  Today labs came back pretty darn good.  But the one thing I have learned from the past is that labs don't always follow what Gary has going on.  Overall Gary is good.  Small things bother me.  Very irritable and itchy evidence of vasculitis. Tomorrow we come back for a clinic appointment to discuss.  I venture to guess we will sit on this and give the tacrolimus more time to work.

Hi Ya!

Just wanted to pop in on Gary's blog and update.
Gary is doing good.  We take it day by day.  Gary is getting taller.  He is growing into a boy.  He is getting funnier and funnier as his vocabulary improves.  We have a power struggle going on in the house.  Gary verses the rest of the family.  His siblings have been getting frustrated with the little man getting his own way on just about anything.   Hmmmm.  Working on it.

Big brother McGuire heads off to camp tomorrow.  I am a little nervous but have so much going on right now I am sorting thru the wonderful emotions of life right now.  I went to my running coach certification class this weekend.  I felt like a big girl!  Back in college, on my own.  It was fun.  My wonderful, marvelous, incredible, amazing sister and her husband took the kids for the weekend.  Daddy had to work.  I left at 430 on Friday morning.  Gary had been tossing and turning all night.  He kept doing this weird swallowing thing.  He had been doing it on Thursday as well.  A few times I accused him of stealing candy!   That he was sucking on it and swallowing, trying to pry it out of his mouth.  Nothing.    Wooopsss.  Mom of the Year right here!  I woke my sister up to let her know to keep an eye on him (we were at her house).  She text me a thought on my way out.  The text said, "don't respond to this, don't text and drive, but we had a thought about the swallowing.  Calcinosis in his throat triggering his swallow reflex."   Uggghhhh.  It is completely possible.  He has an abundance of calcinosis in his neck.  Months in, when he was first diagnosed, swallowing and the muscles involved with swallowing were weakened requiring an NG tube.  After muscles have been weakened and damaged, it is thought that calcinosis is what happens in place of that damage.  That is how I understand it.  So it is very possible.  The other possibility, he has a  little post nasal drip that I can't see.  So keeping an eye on it is what is best.  If he shows any signs of distress then I will have it checked out.  He has been great since then.  But I really thought of turning that car around, and blowing off my class, because my kids come first.  During class, we discussed a lot the process of exercise and how our muscle kick out lactate ect,.  It actually made me teary eyed hearing and reviewing how our bodies work.  I had to do my best to not dwell on the fact that my sons body does this on it own to damage his muscle in an unnatural fashion.  It was ridiculous.  I had to bite my lip a couple times and tell myself to focus.  I wasn't going to let this disease in on my passion.  My passion for running and helping people with running.  It is funny how my precious sons disease can walk up from behind me as if on a sneak attack and shove me down like a bully on the playground.

Infusion # ? Lost Count long time ago

Things went smoothly yesterday.  A Child Life Specialist met us in the infusion center to help with Gary getting the IV.  Gary had the usual same amount of anxiety.  It has been mounting in intensity however.  This time, Gary tried to get himself to "throw up" during the IV start.  He looked very red.  It's like he is working on turning himself inside out.  They missed the vein the first time.  But a nurse that has done countless IV starts on him came to the rescue and put that needle in a gusher.  The Child Life Specialist helped with Gary's anxiety prior to the procedure.  She distracted him with giving a Teddy Bear an IV.  We have done that before but I didn't mind return to old trix.  Making the actual procedure go without tears, fears, and anxiety is just impossible.  I don't think at this point it will come without tears.  She told me its a natural reaction. I completely understand that.  It is not completely natural or normal for him to have a disease that requires this treatment.  Sitting in the infusion clinic all day, I get to hear the "natural reactions" to different procedures.  Getting around them is just impossible.  Trying to make it easier is what I am after.  Since I am seeking, than I shall find?


We are waiting to hear if Gary is therapeutic with the dose his new medicine he started.  His levels as far as JDM are still holding.  He still has a elevated AST level of 51.  Calcinosis, still there but staying put.  I try not to sit hear and hold my breathe waiting for the next flare.  I'd rather go running.   Run those feeling out.  

Thank you for your input

Thank you to Summer and Kalee for giving me your advice.  I didn't much feedback else where but that is ok. I would have the same reaction.  "I'm suppose to tell you what your kid should take? No thanks!".

Summer, thank you for your recommendation on the Enbrel injections.  You had me change my mind for awhile there.  I know we all can only give advice or at least tell others what we have been through.  I humbly thank you for stepping up and helping me decide.  So glad I have you.  I will pray the insurance company helps you get going on the Rituxan.  Keeps us posted.

I read up on it and did a little research.  I think however, I am going to go with Tacrolimus.  It is what my gut says to do.  It is a little hard to start him on new medicine because he has since recovered from his flare.  He seems to feeling good and his energy is back.  However, the calcinosis is increasing  what seems like by the day.  A few have increased in size.  It also seems that if you can't feel it in a particular spot, keep going and you'll run into.  The inside thigh one's are the largest so far.  The folds of his arms seem to be getting a little on the active side.  They do not bother him.  He has no pain unless you grab him a certain way.  It's the whole, "you don't look sick" thing that really comes into play.  I have called in to order the prescription.  Looks like this Friday we will be starting it.  They want to take a baseline for labs.  We will have to start to labs again, it sounds, like on more than a monthly basis.

Our next infusion for IVIG is Sept 28th.  That's not far off :

 


Gary was granted a wish months ago.  It has been an ongoing project.  He wished for a Rainbow Play System.  I wished it was protected from the sun so he could play without worry. Our wish was granted.  Just before we decided break ground someone utter the word permit.   Eeeeekkkkkksss.  Scccreeeacccchhhhhh was more like.  It brought everything to a halt .  We now need permits to install this awesome sun cover that is being donated by a company in Ohio.  I mentioned it on Facebook a little.  So we have to cover the cost of the permits.  Make A Wish made it crystal clear from the beginning that they cannot be involved in any way with building permits.  Not even on a monetary level.   We are working on it.  We asked the city we lived in if they would considered waiving the fee's given the nature of the situation.  They kindly considered it, but informed us they did not have the authority to waive it.  But God is good.  It will work out ; )!

Like the great Jimmy the Cricket sings,

"When you wish upon a star, makes no difference who you are, anything your hearts desire will come to you. If your heart is in your dreams, no request is to extreme."

Through his eyes!  He is excited for his wish.

Gary in the background as the architect goes over the plans
for the sun protected cover.

Raising Awareness

Happy National Myositis Day

What can you do I National Myositis Day?  Hmmm?  I thought

about it and I think informing one person who

did not know about it previously to this 

day is a good way to celebrate.

Raise Awareness.

NEW Med's/Clinic Review

Think I have a trend going on now of  "reviewing" events in my life.   We had our clinic appointment yesterday.  Aunt Amy and Uncle Ray drove all the way to the hospital to be with us during our appointment.  We met a new fellow, which is a new doctor to rheumatology.  I looked at our nurse checking us in and said raising one eyebrow with a wicked smile, "Really,  do send him in.  I will get him broken in."  The other nurse mouth to me, "fresh meat".   He was younger, and very nice.  I really don't want to tear them apart.  I had let them know about the mistaken "flu diagnosis" that was discussed.  I told him not to apologize.  I was use to it.  Gary was very uncooperative as usual.  I did mention that I am become concerned about Gary's psychological profile.  I wasn't kidding about that in my last post.  I like to joke about things or make light of them to cope but this one keeps tapping me on my shoulder.  He needs help dealing with this.  He is getting older.  He isn't a baby anymore.  He is a little boy.  The fact that his growth and development will involve a large part of his treatment and disease needs to be addressed.  Well not a large part but at least effect his growth and development.  Dr. E came in and did a complete check over like she always does.  She was very careful to make sure she felt all the calcinosis.  I am sure to note any changes for the next appointment.  She wanted to see how deep and shallow they were.  His strength tested of good.  His cuticles looked good.  His labs holding.  But yet the process of the disease is still there.  So we are adding a new medicine.  Lucky you, you can help me decide which one.    One is called Etanercept and the other Tacrolimus.   Gary is doing good, but only because of drugs.  We have graduated from the traditional way of treating Juvenile Dermatomyositis is what the doctor said.  Do I get a T-shirt for that?  What about Gary?  Let's have a party.   I'll take a 13 mile run followed by a vanilla vodka coke and a soak in the hot tub I don't have. Snort weeeep.
 
So with no further delay, I present our choices.

Etanercept

Brand name Enbrel

Injection, so it will be a new shot in addition to methotrexate.
It's a TNF blocker, Tumor Necrosis Factor Blocking Agent which means blah blah blah blah and blah. LOL  sorry. ( I just finish up with Make A Wish foundation with the architect.  Geometry makes turns my brain OFF.)  Anyway, back to Etanercept.  Comes with all the fun warnings like lymphoma and other cancers.  Risk of serious infections. Ect. ect. ect.   Ummm.  It reduces inflammation.  Usually used for arthritis.   You can click on the link to see what you can make of the internet.

Tacrolimus

Brand name Prograf, protopic
Taken by mouth.
Immunosuppressant Agent, calcineurin Inhibitor.  Which means, you guessed it, blah blah blah blah and blllaaahhh.  Same warnings, risk of cancer, infections.  Warning says do not give to children under 2.   Gary is three but still.   It is used to prevent organ rejection after transplants.  Again, you can click on the word and it will link you to what the internet has to say about it.

At this point I am leaning towards the tacrolimus.  The other is geared toward arthritis.  Gary is not having trouble with that aspect of the dermatomyositis.  It's more the inflammation of his skin not his joints.  But then again its inflammation that is indeed the problem.  This one takes several weeks for see effects.  The other takes several months.

Which would you give your three year old?  This is in addition.  We are not replacing any.  One of these will be added.  The doctor took cyclosporine off the table because it messes with blood pressure.  We already have blood pressure issues.  She also does not want to give him pamidronate because he is to young.  It remodels the bones. Taking calcium from other places and putting it in the bones.   Blah.

So leave me comment, tell me what you think.  It is ultimately my decision so please do not be offended if I don't pick the one medicine you think I should give him or you know what I mean.

Clinic Day

Today is our check-in with the doctors after the whole ER visit.  I called on Monday to see what his labs were that we had done on Friday.  A nurse called me back and gave me labs I don't tend to look at.  I am always on the look out for muscle enzyme labs which indicates disease activity.  I wanted to let them know he was still a little sluggish but nothing that required us to be seen sooner.   She noted some platelet levels and sed rate.  Something about Gary having been sick or had the flu.  I shook my head at that because he had not been sick.  I was under the impression he had a flare from his disease.  I don't waste my energy or breath clearing things up sometimes because it doesn't matter.  It only matters to the doctors.  I wonder if that is a bad attitude on my part.  Maybe I really should take the time to explain to her that the official diagnosis of that visit was a JDM flare.    But then again, like I said, I see the doctors today.  I even am going to have the pictures I post on my blog developed and bring them with me today.  I want to show our main rheumatologist where the calcinosis are at.  Gary does have a few that have tripled in size since last week.  The inside of his legs and groin area seem to be riddled with them.  I found a new one on his elbow.  Calcinosis is common on the joints.  They don't bother him unless you grab him to pick him up a certain way.  I am fine.  As long as they stay where they are at.  If they inflame like they did last week, well off to the corner I go to rock back and forth in a fetile position.  Gary overall has been better the past couple days.  His energy came up a little bit.  Now we are back to having trouble sleeping again though.  My children have never been great sleepers so through a bunch of meds on top of that!  GO TO SLEEP KID     I feel better now.

I Have Other Children


I know all's I ever talk about is my the chosen one.  So a little blip/update on the other two.  McGuire is doing pretty good.  He started middle school this year.  School is a big challenge for us.  When I am trying not to fret over Gary, thoughts of McGuire will enter my head.  McGuire is working hard to find his way.  He gets confused easily.  He seems to have trouble grasping things, but works very hard.  I need to get up to his school to make sure no one is just scooting him along.  The whole campaign with "not letting kids fall thru the cracks" seems to have dissolved with the new economic conditions of our times.  I will not let him be passed up or passed on.  Just because my kid doesn't learn or operate like all the other cookie cutter kids, doesn't mean he should have to step off the trail.  Why don't you get him into tutoring?  Sure, let me go pick money on my money tree to pay for that.  Why don't you take him to the doctor to get help?  Speech Therapist, Neurological Evaluation done at Mary Bridge, and consults with our pediatrician and endless meetings with the school for extra help.  We are going to get this handled.  Its like running a marathon.  One foot in front of the other.    My princess, Elexis, seems to be doing very well.  She is the typical girl, emotional, craves attention.  They are both so pretty and tender.  I am trying really hard not to screw them up, LOL.  It's funny, sometimes I feel guilty for taking the time to run.  A lot of Mom's, even me, say my kids come first.  They are number one.  Well, God is obviously first. But I think its a fine balance.  You have to be your best too.   Spin those plates of my very blessed life.