Crazy day coming to an end. (Long)

Today went by in a whirlwind!  We both had a difficult time waking up this morning, but we actually got to our first appointment on time. We waited for about ten minutes to be called for the CT scan of Emily's sinuses; the actual scan was even faster. She did very well. She was a little scared once the machine picked up speed. It sounds like the whirring of a washing machine. That can be scary when you are not expecting it, especially when it is over your head.

From the CT lab, we wandered upstairs. We had a longer stay in the pulmonary waiting area, but they called her at exactly nine. The tech that performed the test was such a sweet lady! In fact, her daughter has chronic conditions, and we share a doctor. She was telling me how her daughter decided that more kids needed things to do in the hospital, so she decided to gather supplies and bring them to kids in a wagon. She was seven years old at the time. That really touched my heart!

Anyway, the tech was wonderful. She made Emily feel more at ease, and she explained everything very well. She took gauze and soaked it in a solution made to produce sweat, then she wrapped the arms, put electrodes on them for five minutes per side and wrapped them in ace bandages. Em grabbed the tablet and watched "My Little Pony" for the majority of the time. When we finished there it was already after 10:30. We walked down to the fourth floor to let them know that we may be late. I'm so glad that we did! Emily hadn't eaten yet, and we still had to get to the ENT for eleven. I stole a few minutes and grabbed her some chicken from Wendy's. The wait was interminable!
We actually made it to the ENT on time. I don't know how considering that we had to wait for valet to bring the van. (Using valet is so much easier than walking for blocks with a hurting, tired child and a bunch of stuff that you need.) I had thought that we were in the home stretch. We would have been, but the ENT was running about forty-five minutes late.

I really thought that I knew how this appointment would go. I was not expecting to see so much inflammation still on her CT. Her right side is nice and clear. The left side remains all swollen and shady. The doctor can't say for sure that it's mucus. What they do know is that it is inflamed. They decided not to worry about treating it right now because she has not displayed any symptoms of a sinus infection. Of course, they didn't have the results yet from the Cystic Fibrosis test. I am assuming that will be negative.


We did not get back to the hospital until one P.M.   I could not believe that we were so late! I was very thankful that I let them know that we may be held up. Shortly after arriving we met up with an advocate who works for a company that works closely with our insurance company. She asked me a ton of questions, and she told me that she will try to get us whatever help she can. Her job is to help get medicine and equipment approved, help to find resources, programs, clinical trials, and things of that nature. She flew in just to meet with me for about an hour. I was very impressed. We are going to work on getting a hospital bed approved!  What a blessing this service is.  And she was wonderful!

After she left things started to settle down a bit. The rushing around was mostly done; we just had to wait for the IViG to get started so that we could move to a room. I didn't expect to see a doctor since we did not fill out any of the paperwork, but as we were packing up to head to our room for the evening our main doctor came over. We totally love her!!! She is just so sweet, but she also has more years of experience than the other two rheumatologists combined. She did the strength tests and was very pleased with Emily's muscle activity. We talked a little about medicines- mostly which ones Emily is on and which dosages. She had just started looking at Emily's hands when she asked if we thought that the Remicade was doing enough. I replied that I didn't think that it had been quite enough for a while. Emily was actually doing so well today that I was surprised that she even asked. She told me that, as much improvement as she has seen in Emily, she doesn't think that it is quite enough. Because Emily now receives her IViG to boost her immune system back up, she feels more comfortable about aggressively attacking the arthritis. She wants to see her running more, being more active, and acting like a kid. If insurance approves it, tomorrow she will be starting Orencia again. She had three doses with our old rheumatologist, but when we changed doctor's, they chose the right route, which at the time was high steroids, Methotrexate as second line and Remicade as third line for Dermatomyositis. It wasn't thought to have any effect on DM before, so we changed. Emily is a little nervous, but I'm actually a little excited. We are pushing the envelope, but lately she's had more days where something hurts than not, and that isn't how it is supposed to work.

As one last little shocker, once we moved to our room and got settled the nurse announced that she was going to briefly stop the IViG and give her a round of Rocephin, a good all-around antibiotic. At first, I was very surprised, wondering what I missed. It was a very long day. I realized that Dr. E likely saw the CT scan results from this morning, saw the inflammation, and decided to tackle it. This is one of the reasons why we love her! She isn't afraid to treat the WHOLE child. While some doctor's only take on little pieces, she takes over everything that she can. And this is why we would rather drive two and a half hours from home instead of drive an hour away.

We shall see what tomorrow holds. It will be today by the time this posts... Hopefully we will also know the results of the sweat test no later than Wednesday. Praying that tomorrow is an easier day!

World Autoimmune Arthritis Day is coming!

Are you looking for more information on forms of Autoimmune Arthritis?  Are you wondering what the heck it is?  Are you or a loved one affected?  Well, if so, you have found this post at the right time!  www.worldautoimmunearthritisday.org is hosting this FREE event for a total of 47 hours so that it will span across the world!  It's coming your way on May 20!  If you would like to register click here to head over to the registration page.

I'm changing my format a bit tonight.  This post is intended to be a "take away" from this event.  This is to go along with my presentation.  I will be speaking about how to cope with having a child with autoimmune arthritis.  I touch briefly on what juvenile autoimmune arthritis is, some things to watch out for, how to find a doctor... that type of thing.

There are some things that I have found important that I did not cover in my presentation, and one that I just can't stress enough.  Having one autoimmune disease opens a person up to developing more.  I was so blind at first with my daughter.  I truly think that she had JA from a very, very young age, but we didn't figure out what it was until she was 5.  It took months to get into a pediatric rheumatologist, and another year for her to start to feel good.  Once she was on the right medicine combination she did so well that many days it was almost like she wasn't ill.  I naively thought "my child will never flare.  We're past that now."  I have since learned through making friends with a few hundred parents of JA children that most kids don't outgrow this.  I'm sure that there are some, but not many.  Eventually medicines will stop working.  You will be on a quest to find a new medicine.  That is terribly frightening... making decisions that may alter your child's health.  You look at the warnings and you are terrified.  Such decisions have to be weighed carefully.  Do I let him or her suffer and risk more severe damage or try something that may cause other problems?

Hopefully your child will be a "simple" case.  Maybe a nice oligo (less than 4 joints) with no eye problems.  However, JA can look like simple arthritis but actually just be the first signs of other diseases.  In my case, my daughter has Mixed Connective Tissue Disease.  It started with the arthritis but within about six months of treatment we noticed that she started turning blue.  Yes- blue.  The pictures below are actually a Raynaud's Phenomenon episode.  The blood vessels overreact to the cold.  True Raynaud's has a 3 phase color show.  Blue as the hands start to get really cold, white as the blood stops flowing and red as the blood starts flowing again.  Raynaud's can be its own disease but it is actually worse as a secondary.  It is associated with MCTD, Lupus and Scleroderma.   It takes almost nothing to trigger a flare.  My daughter developed frostbite inside of the school cafeteria!  That's when you start to make life-altering changes.  She wasn't allowed to wear shorts or skirts, she had to keep jackets, mittens and hand warmers with her at all times and she had to wear 2 undershirts under her clothes until she was finally started on medicine for it.

We had a very hard time researching MCTD.  It is basically overlap.  There is a long list of symptoms that it can include, and every affected person has a slightly different case.  What did we learn from this?  With an autoimmune disease, crazy things can happen.   Weird rashes can be a sign of an unrecognized disease.  The blue hands can mean Raynaud's.  Watch your child carefully, chart pain, stiffness, and any unusual symptoms.  My favorite thing to do is take pictures!  Yes, I have taken pictures of just about every strange occurance that we've had.  Maybe your doctor won't see how big your child's knee can swell in person, but they have to appreciate the picture!  And bring up anything that seems unusual to you.  Sometimes it's the little things that don't make any sense that can change a diagnosis.  For instance, pain in the heels or toes can be attributed to Spondyilitis. 

They say that usually siblings don't get diagnosed but I personally believe that their figures are flawed.  I am on several JA boards and between those and my couple hundred parents on my Facebook, we see many siblings becoming affected.  I would try hard not to get paranoid but always be on the lookout for symptoms.

As for helpful hints, these are some things that we do.

-For injections, ask your doctor to prescribe numbing cream.  This numbs the area so your child doesn’t feel the sting.  This has been a miracle for us.  You may try to use it for lab work also, but it can make the veins roll or "hide".

-Welts or itching after injections: always consult doctor but often a small dose of allergy medicine will help lessen the itch.  My kids like to use ice after an injection, also.  We make sure to warm the medicine up with body heat first before injecting, but have an ice pack nearby for after.

-A heated mattress pad can take away much of the morning stiffness.  This can be used year-round.  This was another huge miracle for us.  (NOTE: Do not sleep with a heating pad for safety purposes.) 

-A heating pad will help a lot, but if you can’t take one with you, make a sock filled with rice.  This can be heated in the microwave for a minute and placed in lieu of a heating pad.  There are also small hand warming pads that are disposable that can be used as a heating pad.  They don't get as hot but they are much more portable!

-A nice hot bath can do wonders for stiffness and pain.  There are some bath additives out there labeled to help with pain!

- We had a friend that told us about magnet therapy.  Emily swears by magnet therapy.  She always keeps an anklet with magnets on for her ankle and knee.  She swears that it works.  I couldn't tell you how, but she's convinced.

-Peppermint can help with nausea

-Sleep disturbances- We haven't really figured out anything good for this yet.  Emily does pretty well just settling herself back down now.  In the past before she was on a prescribed NSAID (non- steroidal anti-inflammatory) we used to give her a little pain relief on the bad nights.

-Relaxing the jaw-  We only just started dealing with jaw issues in the past few months.  Thankfully, so far so good with that.  I was told in the Juvenile Arthritis Conference session on jaw JA that up to 83% of the kids actually have jaw arthritis but it's silent (painless) until it becomes very bad.  I was extremely grateful to hear that, because when my son told me two months later that his jaw hurt, I got the ball rolling!  (He currently has the Juvenile Psoriatic Arthritis diagnosis.) 

-Research everything as much as you can!!!  Knowledge is power, and the more you know that more of a help you can be to your child.  The doctors are human- they will not always be correct.  Doing your own research can make your family less of a victim and more empowered.  

-Get copies of any tests and add them to a thumb drive or disk.  This makes it easier if you are hospitalized or if you have to see another doctor.  Also, look over your labwork reports.  Just because a doctor orders blood work to be done doesn't mean that they are seeing it!  If you see something that doesn't look right, bring it up to your doctor.  

-Talk to your child, and tell them as much as you can to help them to understand what is happening to them.  Put yourself in their position.  If you were 5, 10, 15 and just starting to go through something like arthritis, how scared would you be?  They need to understand some of what is happening.  Also, help them to know what medicines they are taking.  If they are hospitalized and you are not in the room when they get their meds, they may be over or under medicated.  (Yes, that has happened to us, but thankfully Emily knows what to take and she stopped it!)

-Your child should be pretty free to do whatever sport he or she would like to do as long as they can.  If it hurts they should stop or slow down, but moving the joints will help to lubricate them.  They should be free to set their own limits within reason.

-If your child has arthritis in the hands have them take little tiny toys (like the kind you find in gumball machines) in their pockets to play with all day. Play Doh and squishy balls are also good for hand exercises.

-If they can stand the heat, get a paraffin bath.   That can really help the hands a lot.  

 And if you have any questions that I haven't covered, please feel free to ask them!  Here are some links that I have used to get better information.

The Arthritis Foundation's Juvenile Arthritis page 

American College of Rheumatology 

Spondylitis Association of America 

Childhood Arthritis & Rheumatology Research Alliance 

Raynauds Association 

National Heart, Lung and Blood Institute (Raynaud's explanation) 

Kidz Occupational Therapy.com 

Kids Health from Nemours 

Cincinnati Childrens page for Lupus 

Snowballs in summer

Why snowballs in summer, you ask?  Today it was 98F at 3:30 this afternoon in the northern part of the state.  I discovered this after about two hours of a doctor's appointment for Emily that left me feeling like someone had thrown snowballs at me a few times. 

It started out simply enough.  We drove 138 miles (one way) to the new ENT's office for a new culture of Emily's sinuses.  I really didn't know what to expect.  I assumed that he would look at her, take a history and have us come back for the culture.  First a resident came in and took the info.  I gave him my list of her meds, along with some of the bottles because they ask for them.  Because I'm learned how to be pretty prepared now, I had printed out her CVS med history from November to now so that they could see all of the antibiotics that she has been on since November.  I even highlighted them.  We discussed history, her pneumonia in 2007, the somewhat frequent bouts of bronchitis that she gets, and of course this stupid sinus infection from hell.  The resident walked out to confer with the primary doc, and then they both came in to see us together.  The first question that the main doctor asked me after a brief introduction was, "has she ever been tested for Cystic Fibrosis?"  I think my jaw probably hit the floor.  I have always thought of that as something that starts from birth and can kill you pretty fast.  Of course, times have changed and those affected are now living much longer, but also there are apparently different strains.  Some people are very affected while others have milder forms.  It took me a few minutes to mull this over.  We're not sure what to make of this now.  She does have several of their symptoms- quite a few- but not so much the chronic cough that I have always associated with CF.  Also, they say that most people that are tested do not have CF, so that helps me to feel better.  If you'd like to read more, I have found this handy PubMed article on Cystic Fibrosis.

They asked me if she had ever been scratch tested, or if anyone had brought it up.  When I said no they said that they assumed not because (apparently) people with Dermatomyositis cannot be scratch tested?  Good to know!  I had no idea!!!  That kind of hit home that, no matter how much research I do, I will always miss something.  (Unless I go to medical school!!!  :)

The next thing that got me was Emily's reaction.  They asked her if they could put ONE DROP of Lidocaine into her nose to be able to do the culture.  Nope.  I begged, I pleaded, I tried to rationalize.  The doctor's left the room and came back TWICE to give her time to collect herself.  We really needed that culture.  But she just wouldn't do it.  She was so upset and I was so frustrated! 

What they would have done was taken a little cotton scraping of her sinuses, then checked for bacterial growth.  Upon finding bacteria they would have tested it with different antibiotics to see which one would eliminate it best.  Pretty important, huh? 

Instead of the culture, we are now scheduled for sinus CT on May 21st at 8 A.M., a follow-up ENT appointment at 11 A.M., and then... IF she's not sick... (HA!) we will be at the hospital from 12:30 until sometime the next day.  Somewhere in the middle of all this we are supposed to go back up there for the Cystic Fibrosis (CF) test, the sweat test.  They are supposed to call me tomorrow to schedule the CF test, so I will likely point out to them that if she is sick on the 21st she can't get her meds.  We'll see then if they want to change the appointment.  I didn't even think about that until we got home.  Boy, was I ticked!!!  Not at the doctor's.  They did all that they could and they had the utmost patience.  It was just everything else. 

So now I am pretty certain that she is going to be sick for the next 3 weeks.  I am working on going to part-time at work working weekends only, but we need to get more people in first, so I can't take time off right now.  She's simply going to have to deal with her decision.  Maybe it will help her to make better decisions in the future.  It's just hard because it could have been so easy. 

The funny thing is that, between her and Zachary, I have always worried more about Zach with respiratory problems.  If she's positive we'll definitely have to have him tested. 

We are getting closer and closer to all set for home schooling.  Ya'll have no idea how huge that will be for me, for the kids.  I cannot keep running ragged between work, PT/OT, trips to the hospital and not having any time to make phone calls and set things up that I need to.  I think this will be the answer to a lot of prayers.  I know it will be a lot of work, but we all really need it!

The happy point of the day was finding out that her Medic Alert bracelet and kit came in!  They have it engraved with "Bard Port Implanted Port, Connective Tissue Disease, Raynaud's".  It's perfect.  I'm so glad that I finally did it.  It's been a long time coming.  And with that, I have to head to bed.  I have to go crazy at work tomorrow, then grab the kids from school for Em's therapy sessions.  Fun, fun!  Have a great day!