JJ: Switching Meds

I took my gang to JJ's follow-up appointment today with our new rheumatologist, Dr. Miller. She is wonderful. I am really, really, really glad we switched doctors. She is so thorough with her exam and my kids really, really like her. You don't always get a doctor who not only knows what he/she is doing AND has wonderful bedside manner...especially with kids. I love that!

JJ has been on naproxen since April. It has definitely helped to ease his pain, especially in his knees, ankles and toes. His energy did take a big dip in the very beginning and we took him off the naproxen for three day and in those three days his pain was back in his knees, ankles and toes. He was waking up at night again, screaming from joint pain and was complaining about pain when he woke up in the morning. So, back on naproxen he went. However, to keep his energy up, but control his pain, he went from 10mls to 8mls of naproxen per day.

While the naproxen has helped some joints, it has not eliminated pain in other joints. He has fluid sitting on his left elbow (he can barely touch his left hand up to his left shoulder without yelling and pulling his arm away from you), his left wrist is now swollen and stiff and Dr. Miller also believes he has arthritis now in his right hip. When she went to check his hips, he winced from pain when she checked the right side (Have I mentioned how much I love her thorough exams?? Our previous doctor NEVER checked for these things!)

In addition to joint pain, he has also had tummy troubles since he started the naproxen. We started him on Zantac two weeks ago (1mls - 3x a day) and he still has stomach pain. So, because the naproxen is not taking care of all of the joints and because he is still having stomach pain, Dr. Miller is switching him to a new medicine - Mobic (Meloxicam). It is still an NSAID, but it is supposed to be easier on the stomach. And, the nice thing is he only has to take 0.5 mls once a day! He is to continue the Zantac while he is on Mobic (Meloxicam).

Dr. Miller was concerned that JJ has not put on any weight since March. So, because of all the tummy trouble he has had and no weight gain, she wants labs done to have him tested for Celiac Disease when he comes back in a month for a follow-up appointment.

In the meantime, when Mia goes in for her post-surgery follow-up appointment on Tuesday, August 9 with Dr. Vecchiotti to check to see how everything looks after the tonsillectomy and adenoidectomy she had a few weeks ago, Dr. Miller wants ultrasounds and x-rays done of several of JJ's joints: neck, elbows, wrists, and hips. It will be one very full, very long day for us at Tufts - JJ's ultrasounds and x-rays will be all morning long, then a break for lunch and then off to see the ENT at 1:15 p.m.

So, we will start this new medicine and see how he does on it. Unlike naproxen where I know what the side effects may be (stomach pain, bruising easily, etc.), Mia has never taken Mobic (Meloxicam) before. I am praying this new medicine will be easier on his system and bring his joints some much needed relief.

Up next: August 19 - Uveitis appointments at MERSI for both Mia and JJ.

In the meantime, we will be enjoying the rest of our summer. It has flown by so quickly! Can you believe Halloween has already hit the stores?? Before you know it, school will be in full swing with Mia in kindergarten and JJ in preschool five days a week. I am hoping to catch up on my sleep a bit this month and enjoy these last few weeks with my kiddos before things really start to speed up! :)

Happy summer to you all!

I Remain Confident

Psalm 27

1 The Lord is my light and my salvation—
whom shall I fear?
 The Lord is the stronghold of my life—
of whom shall I be afraid?

2 When the wicked advance against me 
to devour me,
 it is my enemies and my foes
 who will stumble and fall.

3 Though an army besiege me,
 my heart will not fear;
 though war break out against me,
 even then I will be confident.

4 One thing I ask from the Lord, 
this only do I seek:
 that I may dwell in the house of the Lord
 all the days of my life, 
to gaze on the beauty of the Lord
 and to seek him in his temple.

5 For in the day of trouble 
he will keep me safe in his dwelling; 
he will hide me in the shelter of his sacred tent 
and set me high upon a rock.

6 Then my head will be exalted 
above the enemies who surround me; 
at His sacred tent I will sacrifice with shouts of joy; 
I will sing and make music to the Lord.

7 Hear my voice when I call, Lord;
 be merciful to me and answer me.

8 My heart says of you, "Seek his face!"
 Your face, Lord, I will seek.

9 Do not hide your face from me,
 do not turn your servant away in anger;
 you have been my helper.
 Do not reject me or forsake me,
 God my Savior.

10 Though my father and mother forsake me, 
the Lord will receive me.

11 Teach me your way, Lord;
 lead me in a straight path 
because of my oppressors.

12 Do not turn me over to the desire of my foes, 
for false witnesses rise up against me,
 spouting malicious accusations.

13 I remain confident of this: 
I will see the goodness of the Lord
 in the land of the living.

14 Wait for the Lord;
 be strong and take heart 
and wait for the Lord.

Goodbye Tonsils! Goodbye Adenoids!

We are taking our daughter in to Boston this morning to have her tonsils and adenoids removed. Kind of a hard thing to explain to a 5.5 year old, especially when we say the word "hospital" to her and the first thing she remembers is when she was 3 years and had her joints drained and injected (kids remember everything! EVERYTHING!). After we told her today, she asked me, "Well, will they grow back??" Sweet, sweet girl!! Let's pray they don't!

Mia will be staying on Indocin (her arthritis meds; 9mls total) during the healing process. Her rheumatologist and otolaryngologist are working together to make this surgery and recovery as easy as possible for Mia. She is in good hands - with her doctors and with her family. Mommy and Daddy will be there every step of the way!

So, dear friends, if you think of it as you go about your day, please pray for our sweet girl:

Please pray for no fear. 

Please pray for the doctors. 

Please pray for wisdom.

Please pray for a quick recovery. 

Please pray for NO FLARES. 

Please pray for our family.

"There's hope for your children." God's Decree. 

Jeremiah 31:17

"As a mother comforts her child, so I'll comfort you." 

Isaiah 66:13 

Two BIG "OOPS"!

On Monday, we were told Mia had polyarticular arthritis and JJ had systemic arthritis.

On Tuesday, we were told that was a big mistake.

Mia and JJ both have oligoarticular arthritis (Mia has developed extended oligo in her writing hand). Oligo is a lot different than poly and a LOT different than systemic, but still serious. And, both kids still need treatment.

How this "oops" happened:

Apparently, a number is assigned to each patient based upon their symptoms/diagnosis. I watched the nurse look up Mia's "number" on her chart. She then proceeded to look her number up on a list to find out what type of JA she had (we were always told Mia had "pauci"...which is "oligo"). I watched her write "polyarthritis" down on her blood work order and hand it to me (I have it here at home):

So, I asked her what JJ's chart said about him (we have never been told officially what type of JA his has). So, she looked it up...and pointed to the word "systemic" on the list and gave me a look that said, "I am terribly sorry!" 

After informing my husband of this horrible news, I just sat there during the drive home and kept saying, "I am completely baffled." JJ has had fevers in the past not associated with a cold/flu and has always run a bit warm, BUT to say he is systemic is extremely serious. JJ definitely is not systemic.

So, I emailed the doctor yesterday to confirm what I had been told and she called me back Tuesday evening and apologized for the "mix-up" and explained that the manual number system and the computer number system were different (?) and that Mia and JJ were definitely NOT poly and systemic. Well, thank God for mistakes!

Oligo is...

Formerly known as pauciarticular this type, is diagnosed when four or fewer joints – “pauci” and “oligo” mean “few” – are involved within the first six months. It’s particularly common in Caucasian children and accounts for about 40 percent of new JIA cases in that group. Girls are more likely to be diagnosed with oligoarthritis and to experience eye inflammation, a condition called uveitis. Oligoarthritis typically develops by age 6. At diagnosis, frequently only one joint is involved and it’s commonly a joint in the leg, such as the knee or the ankle.

If your child also tests positive for a particular antibody in the blood, called the antinuclear antibody (ANA), she faces the greatest risk of developing eye inflammation and will be monitored very closely for eye problems. Compared with other types of JIA, children with oligoarthritis are less vulnerable to severe problems with joint function.

Under the JIA criteria, oligoarthritis is broken into two groups. Children in which the arthritis is confined to four or fewer limbs fall into a category called persistent oligoarthritis. After the six-month window, some children will develop symptoms in additional limbs and will be diagnosed with extended oligoarthritis.

Treatment for Mia (ANA+):

Now on her third NSAID, and after increasing her dosage of Indocin from 6mls to 9mls, I asked the doctor, "Where are we going with this? What's next for Mia?" I explained the pattern we have seen for almost the last four years: Mia goes on Naproxen for a year and a half. Mia flares. Change meds. Mia goes on Ibuprofen (after receiving a drain and injection in her left knee and right elbow in Spring 2009). She goes on Ibuprofen for a year. Joints flare. Change meds. Mia goes on Indocin (a year ago next month). There is talk of remission and possibly starting to wean her off of meds (the is our second talk of remission since dx) and then hand starts to flare and we increase her meds.

Plan: see how she does on the increase dosage of Indocin. Need to get the swelling down in her hand and reduce the pain so it does not affect her when she starts kindergarten this fall, as the pain and swelling are in her writing hand. If her body does not respond to meds and if she continues to flare, the doctor would like to start her on methotrexate. However, before we do that, she really wants to give this a try because she said, "Mia is still so very young. She is only five years old. And, while methotrexate does treat the disease, it comes with a ton of side effects that we will discuss when/if we reach that point. But, because of those reasons, I'd like to stick with NSAIDS for now." 

Treatment for JJ (ANA-):

JJ's x-rays of his elbows showed he has a "small joint effusion" on his left elbow. The doctor mentioned draining and injecting that elbow should his joints not respond when to Naproxen. However, we are having a love-hate relationship with Naproxen right now. It greatly reduces the pain in his joints (not all of his joints, but most of them), but it is increasing the pain in his stomach. Since starting Naproxen, he has had several episodes of extreme tummy pain and/or doubled over in pain from cramping.The same thing happened with Mia when she was on Naproxen after several months. So, they are starting JJ on Zantac (1ml, 3x a day) to help reduce the pain. If this does not help, then we will need to switch to a different NSAID to find something that works for his entire body.

When we are going back: 3 weeks from now (after Mia's surgery)

"His huge outstretched arms protect you-under them you're perfectly safe; His arms fend off all harm."

(Psalm 91:4 MSG)

We Do Not Lose Hope!

Yeah, today was one of those days. It was the kind of day where you want it to be a really quick in-and-out check up for both kids (that's right...two kids with JA), but instead you are there for three hours and find out really crummy news.

Mommy side note: glad I thought ahead and made dinner before we made our trek into Boston to see the rheumatologist. Meatloaf and mashed potatoes were waiting for us after our three-hour appointment with all three kids in tow!

Mia's appointment was supposed to be a "clearance for surgery" appointment. She is scheduled to have a tonsillectomy and adenoidectomy next Tuesday (July 19th) at Tufts. Smack in the middle of summer. (Yeah, yuck.)

Backing up a bit....

In April 2011, I took Mia to see an ENT to get a second opinion on her ears - she has had an unusual sensitivity to certain sounds - the click of the seatbelt, the car door opening, going from inside of the house to the outside all bother her. While we still don't have an answer to the problem with her ears, during the appointment, the ENT happened to look in her mouth and told me, "Her tonsils are the size of two large walnuts. Have you seen these??" He continued to ask me if she has a problem with choking. I said, "She has...on raw fruits and veggies, like carrots and apples." He then asked me if she snores at night. I said, "She does....she has even had a couple episodes where she has stopped breathing for a second and then starts back up again (sleep apnea)." He said, "That's a result of the tonsils. They are so large that when she goes to sleep and her throat relaxes, those two tonsils almost touch and prevent air from passing through."

So. Those two walnut-sized suckahs are coming out next week. And, personally, I could not be happier because I really hate watching her choke on food and hearing her snore at night.

At the request of her rheumatologist, and recommendation of my dear friend Joanne, we changed over to a doctor he works with at Tufts and are really happy we did! Unlike the previous ENT, this one said Mia can continue with her arthritis meds (Indocin) AND take Tylenol with codeine (post surgery med) at the same time. He told us, "The surgery itself is simple, but I will not sugarcoat this - the recovery is brutal! It's two full weeks of a very sore throat." I think to myself, "Eh. She's gone through worse stuff. She can make it through this!"

The concern right now is how her body will respond during and after surgery in relation to her recovery and her arthritis.

Today, we met with a different doctor (Dr. Miller...who we LOVED!) because Dr. Lopez is on vacation and we could not get Mia in before surgery and she needed to have pre-op "clearance." First off, I loved that I did not have to introduce my children to her. As soon as she walked in, she introduced herself and  told me, "I know your family. I have known you for years. Your children's health is discussed in our meetings that we have every Friday." I was shocked. That speaks volumes...especially to a mother.

She started with Mia. She had her do "exercises" to test her joints that have never been done on her before. I was impressed, to say the least. Then she asked Mia where her pain was and Mia pointed to her right hand (her writing hand). After examining her hand, she agreed that she has two very swollen knuckles on the top of her index finger and her middle finger. She told Dr. Miller, "It hurts when I draw and when I write." Dr. Miller told me she definitely needs at 504 in place for kindergarten this fall (her pediatrician also confirmed this several months ago).

So, while we were told we may be able to start weaning her off her meds this summer, we are now INCREASING her dose because 1) her weight has gone up since her last visit (42 lbs.) and 2) her body obviously needs it. Mia will be going from 6mls (3mls, twice a day) to 9mls (4.5mls, twice a day). She can not take cod liver oil right now because it is a blood thinner. She ordered bloodwork to be done on Mia because 1) she needs to make sure she is okay for surgery and 2) make sure her blood coagulates as it should.

Good news with Mia: her leg length discrepancy has gone from 2cm difference to .5cm difference. She does not have a hint of scoliosis in her back anymore. SO HAPPY!!

On to JJ: When he is off meds, JJ's joint pain has been in the following areas: ankles, toes, writs, elbows and today he said his neck hurt. On meds, the pain is in his elbows - specifically, his left one. He can barely touch his fingertips to his shoulder without yelling from the pain. Dr. Miller also examined his tonsils and said we need to have him checked by the same ENT because she thinks they need to come out. Bah.

The really crummy news: JJ has been diagnosed with Systemic JA:

Systemic: Involving about 10 percent of JIA cases, systemic arthritis affects the entire body, beyond just the joints. Both boys and girls are equally vulnerable. Although symptoms can start any time during childhood, they generally emerge by or in elementary school years.


The first sign might be a stubborn fever, sometimes appearing weeks or months before your child complains of any joint discomfort or mobility issues. The fever can be quite high, appearing once or twice daily, before returning to normal. Your child might seem, by all indications, fine in between. Fevers also may be accompanied by a faint rash, one that ebbs and flares over the course of days. Often described as pinkish or salmon-colored, it’s not contagious.


Since this illness can affect the entire body, inflammation may occur elsewhere, enlarging the spleen or irritating the membranes that cover the lungs or heart. In many cases, the fever and other systemic symptoms fade over time. Eye inflammation isn't common with systemic arthritis, but your child’s vision will still need to be checked.


The condition can influence your child’s growth and appetite, making good nutrition a high priority. But the course of the disease, including the number of joints involved, can be highly variable and individual. Only over time will your child’s doctor have a better sense of the challenges she faces.



For the record, Mia has been diagnosed (almost 4 years ago) with Polyarthritis:

Polyarthritis: This type of JIA – “poly” means “many” – occurs when five or more joints are involved during the first six months. Roughly 25 percent of children with JIA have polyarthritis. Like oligoarthritis, it’s more common in girls. But its onset can occur any time in childhood. Both large and small joints, such as the fingers and toes, may be involved. Your child also may experience arthritis in the neck or the jaw, making chewing and opening her mouth more difficult.

Unlike oligoarthritis, polyarthritis more frequently affects joints on both sides of the body, such as the right and the left knees. Children with polyarthritis might face a lower risk of eye inflammation, but will still need to see an ophthalmologist on a regular basis.



Dr. Miller asked me why Dr. Lopez had not requested x-rays of JJ's elbows at his initial appointment a few months ago. I told her it was because he forgot. He sent the order in for the knees, but forgot to request the elbows. So, Dr. Miller sent me over to x-ray with JJ to take a look at his elbows. I will call tomorrow to get the results. But, for now, we are to keep JJ on Naproxen (4mls, 2x a day) and follow-up with the ENT in regards to his tonsils. 


Tomorrow, we take Mia in for blood work. Never a fun thing...especially with Mia. And, especially since she overheard the doctor mention it and she knows it is coming....


And, on that note.....goodnight!

Words to Live By...

Psalm 18:39

"You have armed me well for this fight..." 

(Psalm 18:39, MSG)

JJ has been in Naproxen for the last three weeks. He has still been having some wrist and elbow pain, but the knee pain has lessened - no more "night screams" from pain. However, the medicine has been making him extremely tired.

 JJ is my early riser. He is up when the sun is up (sometimes, he beats the sun) and the birds are chirping away. But, since he started the medicine, he has gone from waking up at 5:30/6:00 a.m. to waking up at close to 9:00 a.m. And then, there are the naps - he started taking 3.5 hour naps in the afternoon. That is a lot of sleep for a boy his age.

So, after week three of being on the meds, I emailed his rheumatologist last week and let him know what was going on and asked if this was normal for him to be so lethargic and tired on Naproxen. He said, "No, it is not normal….., so we might have to consider to switch the Naproxen to another anti-inflammatory agent, particularly if he started complaining of left wrist pain. I would suggest stopping the Naproxen over the weekend, keeping a diary of his pain, and if these are worse, making an appointment to see us next week."

So, I stopeed the medicine last Wednesday night (5/11) and started monitoring his pain. As each day went by, he got a little worse, waking up with more wrist, elbow pain and knee pain (primarily the left side, but occasionally complaining of pain on the right, too). We kept him off the medicine...until last night.

(5/16) JJ woke up yesterday morning with more wrist pain and complaining his hand hurt. At breakfast, he barely made it through half a piece of toast when he said he was not hungry (this boy LOVES breakfast...so I knew something was up). After church, I went to pick him up at his class and the teachers told me he was very tired and asking to be held and rocked. What??? My son? My very active three-year-old boy??

He went to bed last night around his normal time (7:00 p.m.) fell right to sleep. At 9:00 p.m., we heard him screaming in his room. So, my husband and I went down there and tried to calm him down so we could figure out what was wrong. He was screaming because of the pain in his knees. We immediately prayed over him and then tried to get him to calm down. When we knew he was not going to stop and that the pain was really bad, I looked at my husband and said, "Go get the Naproxen."

We gave him his normal dose (5 mls) and heated up the rice sock to put on his knees, but that did not fix it. He continued to scream and cry. So, we did the next thing we knew to do....put him in a warm bath. Before he got into the tub, I asked him to walk for me and that just made things worse because he couldn't walk because of the pain.

The bath seemed to help and, eventually, we were able to calm him down and get him back into bed.

I will be paging the rheumatologist on call today (Dr. Miller) to see what they suggest. Obviously, he needs the NSAIDS, but is Naproxen the right one? It does help with the pain, but it greatly reduces his level of activity and makes him very lethargic.

I will keep you posted on what they decide.

"…for I will contend with him who contends with you and I will give safety to JONATHAN and ease him."

(Isaiah 49:25)

May is Arthritis Awareness Month!

Did you know...

- There are more children with Juvenile Arthritis than those with diabetes, sickle cell anemia, and muscular dystrophy...all of which are more discussed in the media. JA is in the top 4 childhood diseases with cancer, allergies and asthma, and diabeties. And yet there is a huge shortage of pediatric rheumatologists and 1/3 of kids live 50 miles from a doc and 1 in 5 travel more than 100 mi to see doc. (Source: Raising a Child with Arthritis)

Good Morning!

There is a light
It burns brighter than the sun
He steals the night
And casts no shadow
There is hope
Should oceans rise and mountains fall
He never fails

So take heart
Let His love lead us through the night
Hold on to hope
And take courage again

In death by love
The fallen world was overcome
He wears the scars of our freedom
In His Name
All our fears are swept away
He never fails

All our troubles
And all our tears
God our hope
He has overcome

All our failure
And all our fear
God our love
He has overcome
All our heartache
And all our pain
God our healer
He has overcome

All our burdens
And all our shame
God our freedom
He has overcome

All our troubles
And all our tears
God our hope
He has overcome

All our failures
And all our fear
God our love
He has overcome

God our justice
God our grace
God our freedom
He has overcome

God our refuge
God our strength
GOD IS WITH US!
HE HAS OVERCOME!!!

Our Confession Over Jonathan

Just as we confess over Mia...

Jonathan Mark, III

“Our Warlike Gift From God”

Our Confessions for Jonathan:

“He's your bodyguard, shielding every bone;

not even a finger gets broken.”

Psalm 34:20

“Your body will glow with health,

your very bones will vibrate with life!”

Proverbs 3:8 (Msg.)

“It shall be health to your nerves and sinews,

and marrow and moistening to your bones.”

Proverbs 3:8 (Amp.)

“This is what the Sovereign Lord says to these bones:

‘I will make breath [a] enter you, and you will come to life’.”

Ezekiel 37:5 (New International Version)

“’But I will restore you to health and heal your wounds,’ declares the Lord…”

Jeremiah 30:17 (NIV)

“For He has fortified your gates against all enemies and blessed your children.”

Psalm 147:13

He who began a good work in JONATHAN will continue until the day of Jesus Christ – developing that good work and perfecting and bringing it to FULL completion in JONATHAN’s body.

Philippians 1:6

You have given JONATHAN abundant life. As your Word is spoken, life flows into

EVERY JOINT, TISSUE AND BONE of JONATHAN's body bringing healing and health.

John 10:10

Through Your Word, You have imparted life to JONATHAN.

That life restores his body with every breath he breathes.

John 6:63

He sent His Word and healed JONATHAN and delivered him from all destruction.

Psalm 107:20

…Himself took JONATHAN's infirmities and bore his sickness.

Matthew 8:17

…by His stripes, JONATHAN was healed.

Isaiah 53:5

…for I will contend with him who contends with you and I will give safety to JONATHAN and ease him.

Isaiah 49:25

I proclaim healing over JONATHAN MARK DEL TURCO, III. By Jesus’ stripes he was healed. The healing, life-giving, disease-destroying power of God is working in his body. It drives out all manner of sickness and disease. He is full of life, health, strength, and vitality. He is healed, healthy and whole from the top of his head to the soles of his feet. Every JOINT, TISSUE AND BONE in her body operates and functions the way God created it, with no disease or malfunctions. Every system in his body operates and functions with supernatural efficiency. Jesus, Himself, bore all sickness and disease; therefore, sickness and disease are not allowed to exist in JONATHAN’s body.

He is free from juvenile rheumatoid arthritis.

The divine life of God flows through JONATHAN, quickening and making alive his mortal body. He is free from pain, discomfort, distress, and all symptoms of sickness. God’s Word is medicine to his flesh. We are not moved by how he feels, how he walks, or any negative reports because we believe God’s Word and His Word says 
JONATHAN MARK DEL TURCO is healed! He is healed, healthy and whole in Jesus’ name.

Two Kids. SAME Diagnosis.

"Are you sure??"

(Deep breaths)

"Two kids? BOTH with arthritis?"

(Deep breaths)

"How can this be? How did this happen to BOTH of my babies?"

(Deep breaths)

We took JJ in to see Mia's rheumatologist yesterday afternoon and, after he examined him and checked the ultrasound results, he confirmed that JJ has juvenile rheumatoid arthritis.

I am in shock. Complete shock. And, for the second time in the last four years, time stood still for me as I listened to the doctor's report...

Your heart breaks when the nurse holds up a piece of paper with a series of smiley faces to sad faces (series of 1-10) on it and asks your child, "When you are in pain in your knee, which face are you?" And, when your child immediately points to the saddest face (10) on the page you feel just awful. No child should have pain in their body and be that sad. No child should get an old person's disease. No child should be diagnosed with arthritis at 3 (almost 4) years old.

Dr. Lopez took a look at his joints and could see what the PT saw last week - an enlarged left knee. I did not tell him what Mary (PT) saw because I wanted to see if he saw the same thing. He did. He also thought the right knee had some fluid on it, but the ultrasound showed that the fluid was all on the left. When he raised JJ's left hand up to touch his left shoulder, JJ yelled and quickly pulled his arm away. So, he asked him if that bothered him and JJ said, "Yes!" He tested the right arm and did the same thing - right hand to right shoulder. No pain on the right. Just pain on the left. So, he checked the left again and JJ had the same response (this time with a bit of anger because he did not understand why the doctor kept hurting him.) The doctor then apologized and told him he would not do that again.

"So, what is the plan? What do we do to alleviate the pain?"
(more deep breaths)

Dr. Lopez is starting him on Naproxen (5mls, 2x a day). He also wants him to get his eyes checked for uveitis. He sent JJ to the lab for blood work to check to see if he is ANA positive and to check to see if he has the HLA-B27 antigen in his body. He wants him to hold off on PT for now and wants to see him in four weeks.

He did say that while it is possible to have more than one child in a family with arthritis, it is rare. There are nearly 300,000 children in the United States have some sort of arthritis. A study done in 2002 showed that of those 300,00 children, only 300 of them are siblings with arthritis. He also told me that at some point he wants us to have James tested, as well.

So, we are researching, digging deep and looking into how this could have happened. It is not so much as "How did they both get arthritis?" as it is "Why are both of their immune systems compromised??" JRA is an autoimmune disorder. We have to remember this. I have to remember this. There is something deeper going on than what we see on the outside. The inflamed joints are a result of the immune system attacking itself.

Time to go back to the beginning and look at everything...with both kids. Time to pray and pray hard! Time to ask God again, "Lord, show me what it is! All hidden things revealed!" Time to give extra hugs and extra kisses. Time for extra understanding when they are miserable and crabby because it might be something more than just "being moody." Time to fight, once again.


In other news...better news...

Mia got a GOOD report yesterday. This is the second time since her initial diagnosis that Dr. Lopez has said, "I don't see any arthritis in her body." He wants her to continue taking Indocin (3mls, 2x a day) for the next three months and then he wants her to come back in to see how she is doing. If all remains the same, we we attempt to wean her off of meds again. This will be our second attempt at getting her off of meds.

He said he does want her to start back up with PT, though. Because the arthritis' damage to her joints, she now needs to have those joints and muscles around the joints strengthened. The good news is our insurance company JUST sent me in letter in the mail two days ago saying they will cover her again. YES!!

Diet decisions:
We are putting both kids on a GF, DF diet. Mia already eats that way, but we have let a few things slide here and there because she has been doing so well. But, right now is not the time to slip up with anything. We will be slowly putting JJ onto the diet, as well. We saw immediate results with Mia after her initial diagnosis when she was 22 months old - within a month her sed rate dropped from 60 to below 20. And, both kids will be taking cod liver oil (1 tsp, 1x a day) to help reduce inflammation in the body and lubricate the joints to protect them.

I will be back to updating this blog more often as it is one of the only ways for me to "dump" everything out of my head and "journal" it to look back on when things occurred. I ask that you pray and agree with us for our children and for our family for complete health and wholeness to their bodies. God perfects those things that concern us, especially when it concerns our children.

Thank you so much to everyone for your love and prayers yesterday. We love each and every one of you and thank God for you! And, a huge "thank you" to all of my arthritis friends who were so very encouraging yesterday with your prayers and support and kind words. We are all in this together. And, I am holding tightly onto hope that, one day, will WILL get to the bottom of this!

A Trip For Two.

Today, I ask for extra prayers.

Today, I ask that questions be answered. 

Today, I ask that concerns be put to rest.

Today, I ask for favor with doctors.

Today, I ask for strength.

Today, I ask that my mother's heart be flooded with peace.

Today, I stand strong on God's promise for my children - "They have no struggles; their bodies are healthy and strong." (Psalm 73:4, NIV)

Today, we take not just one child to see the rheumatologist, but two.

For the last eight or nine months, our middle child, Jonathan, has been complaining of joint pain. I'd be lying if I said my heart does not sink just a little at the thought of what we might be dealing with here. But, I am trying my hardest to not "go there" and remain in a place of hope and peace.

I'd like to say it is something he picked up on from hearing his sister complaining about her joint pain. But, I honestly don't think that is it because Mia has been pain-free and her inflammation has been drastically reduced since she switched from taking ibuprofen to Indocin in August 2010. Thank God!

I'd like to believe it is growing pains, but when a child not only goes to bed with joint pain and then wakes up first thing in the morning (or all throughout the night) with joint pain, I can't help but wonder if we are dealing with something else here.

It started with his left knee (same as Mia). Pain that would wake up up in the middle of the night with tears and screams. Pain that would prevent him from walking from his bed to the door. So, I would do what I knew to do...pray, heat up the rice sock and put it on his knee and, if it was really bad, give him some ibuprofen. 

He does "W sit" and plays very hard on his knees, so we thought that might be the reason. But, we have really been watching him with it and correcting him if he is sitting the wrong way and even then days where he has not been rough on his knees he still has the episode of joint pain at night. 

We had blood work done end of March at the pedi's office and everything came back normal. However, the PT and rheumatologist said they look at symptoms first and blood work is always second. I've been told by other JRA moms that their kids blood work always comes back normal, but their kids still have painfully swollen joints.

Then, on the morning of April 2, he woke up crying and complaining of pain in his toes. Specifically, his big toe on his right foot (same as Mia). We were already heading in that day to have x-rays done of his knees, so when I got there I had them add toes and feet to the list. 

Two weeks after that, he woke up complaining of pain in his right elbow (same as Mia). Mia was already scheduled to see her PT that week (I always take her in to see Mary to get her opinion before a rheumy appt.). So, I brought JJ with me and asked Mary to take a peek. She confirmed that his left knee is bigger than his right - 1cm bigger around. 

Is it just sheer coincidence that he and Mia have pain in all the same joints (Mia also has ankle pain)? So weird.

So, here we go. Deep breaths today. 

Hyperacusis? Nope! Tonsillitis? Possibly...

I took Mia to see my baby's ENT yesterday for another opinion on her hearing sensitivity issues. I told him what the other doctor quickly diagnosed her with near the end of our appointment with her and he did not agree that she has hyperacusis. He said that this is very common in children around age four to have a "severe hypersensitivity" to sound. He believes that is what she has....and she should outgrow it by age six. Yay! We have been seeing this doctor for the past year now for my youngest son (who we got a GOOD report about yesterday. James is outgrowing his laryngomalacia and will not be needing surgery!!) and totally trust his opinion.

One unexpected issue that came up was he took a peek in her mouth and said her tonsils are the size of two huge walnuts and he thinks she needs to have them taken out. He asked me:

"Does she sleep with her mouth open or closed?"
"Closed."

"Does she snore?"
"Yes."

"Does she choke on certain food and, if so, which ones?"
"She has in the past...and just two days ago she choked on carrots. Usually, it happens with raw fruits and veggies."

"Have you ever seen her stop breathing at night?"
"I actually have, but figured it was just a fluke thing."

He said these things are all a result of enlarged tonsils. She is a slow eater because she is working harder to chew everything up so it can pass between those two large walnuts in the back of her throat. Poor girl! And, here I am trying to get her to hurry up and eat not knowing there is a reason why she is eating soooo sloooow.

He went on to tell me when she is asleep, everything in that area relaxes and those tonsils get closer to one another, preventing air from getting through. Her brain then send off a trigger to her body saying, "WAKE UP NOW! BREATHE!" and she quickly starts to breath again. This prevents her from ever entering into that deep sleep that her body needs.

So, the ENT believes they need to come out. But, for now, I am supposed to keep an eye on her at night for the next two weeks. He wants me to go in and sit in her room while she is sleeping for a few minutes and just listen to her breathing. And, then a decision will be made in two weeks if those big walnuts need to come out or not.

IMPORTANT: Should the tonsils need to come out, she will need to stop her JRA med (Indocin) four days before the procedure and for two weeks afterwards. Cod liver oil will need to be stopped, as well.

Which is something we will be bringing up today when we make the trek into Boston for an appointment with her rheumatologist....

Hyperacusis??

A couple of weeks ago, I finally took Mia in for a hearing test/screening at Children's Hospital. Five minutes in to the appointment I knew it was a mistake - the doctor had never heard of JRA or how it can affect one's hearing.  When I mentioned Mia's diagnosis the doctor responded with, "Oh my! What is that??"

Great.

After bringing her up-to-speed and giving her a brief rundown on the ins-and-outs of JRA, she did a screening on Mia's ears, said she was "normal" and everything was fine. I was mad. I knew there was something else going on with her ears and has been for a long time. Mia's ears are so sensitive that there are times when she is even bothered by going from inside of our house to the outside. The sound change immediately sends her hands up over her ears. There have been times where a nature program has been on the television in the other room and the sound of a bee "buzzing" on the television has totally bothered her ears....and she was in a totally different room!

I mentioned to her what another JRA mom had told me - that there are three bones inside your ear and sometimes the arthritis can affect those bones which, in turn, affects one's hearing. She said she had never heard of this, but that it was "very interesting" and she would "look it up."

Before leaving the office completely frustrated, the doctor told me to hold on a second. She returned 10 minutes later and handed me a piece of paper and said my daughter is "hyperacusis*." When I asked her what it meant she just said very slowly, "HYPER-A-CU-SIS!" (Like I am an idiot). I looked at her and ever-so-politely said, "AND THAT MEANS???" That was when she referred me to several websites listed on the printout and told me I could get more information there. Um, sorry. Aren't you the hearing specialist?? Shouldn't you know what this means and be able to give me a quick definition...or a few helpful tips on what I should do? Trust me, we've seen enough doctor's with Mia that I can easily tell which ones are legit and which ones are full of crap.

Bottom line: While just maybe this might be what Mia has, don't you dare try to put a label on my daughter and "diagnosis" her just for the sake of giving her ailment a name...and then not tell me what the disorder is!

The next day, I made an appointment for her to be seen by my youngest son's ENT at the end of April to get a second opinion. In hindsight, we probably should have gone to him in the first place.

*For more information on "hyperacusis" you are going to have to "google it." That's what I had to do. Bah!

Jenna's Story

My friend, Amy, just created this moving video to tell the story of her daughter Jenna's journey with JRA. Please take a moment to watch it. My heart breaks for the parents who have children who deal with this devastating illness day after day after day. Simple activities that come so easy for some children are so much harder for our kids because of this disease. JRA is NOT your grandma's arthritis!

Sweet, beautiful Jenna....our family is praying for you!

CLEAR!

Mia just returned from another visit to MERSI where Dr. Hinkle checked her eyes once again for any signs of uveitis. We are VERY happy to report that her eyes are CLEAR! Or, as Dr. Hinkle said, "They are crystal clear."


There was some concern because in the last month Mia has been complaining of seeing "floaters" or "spots." So, when we mentioned this to the doctor he checked her eyes with a scope using a more detailed lens to get a good look all the way to the back of her eyes. He said there is nothing - no cells, no inflammation. Crystal clear.


God is good! :)

Hip Pain

This is a first for Mia. She has never complained of hip pain before...until now. She came home the other night from her cousins' house and kept saying her right hip hurt. So, we did what we knew to do...meds (Indocin), oil (Carlon's Norwegian Cod Liver Oil), heated up her trusty rice sock and put it on her hip, and we prayed (hard). I was hoping this new pain spot was just a result of a very active day and that she'd wake up in the morning feeling great. But, when she woke up it was still there (stupid disease!).


So, I thought, "Let's give it a day or so and see if it goes away." Well, it hasn't. She is still complaining that her right hip hurts. 


I'll be putting a call in to her rheumy today to see what he wants to do. Praying he doesn't want to increase her meds again because I don't like having a crabby zombie for a daughter. :(

Seeing Spots and Hearing Issues

Mia has been complaining of "seeing spots" lately. Thought I'd post about it in the hopes that any of my Arthritis Friends could shed some light on the situation. She goes in next Friday for her every-three-month appointment with the eye doctor to check for uveitis. It is really hard to tell. A few months ago she was diagnosed with herpes simplex virus. So, we aren't sure if it is flaring again...or if it is something else (uveitis). We hope it isn't "something else." 

As I've mentioned in the past, the purpose of this blog is a personal journal for myself...to keep track of everything JRA-related going on in Mia's life. As far has her arthritis goes, she has been doing great lately. We are taking a break from physical therapy again (this is the second time we've been able to do this) and her rheumatologist reduced her meds (3mls of Indocin) from three times a day to twice a day. This helps to reduce the amount of grogginess/sleepiness she was experiencing.

She also goes in this Tuesday to finally have her hearing checked. Ever since Mia's initial diagnosis, she's dealt with extreme sensitivity to sound. We've dealt with so many other JRA-related issues (leg braces, MRI's, meds, painful joints, eye appointments, PT and OT, etc.) that the hearing issues kind of took a backseat to everything else. Normal sounds (i.e. going from inside of the house to the outside, fireworks, indoor waterfall, crowds, etc.) that don't both a normal child really bother her. I recently brought it up to some my Arthritis Friends and another JRA mom mentioned to me, "There are 3 small bones in the ear that vibrate in response to sound waves. These bones have articulating surfaces and can be affected by arthritis. It is rare, but so is each and every one of our children." Very interesting! Definitely something to mention to the doctor next week when we go in for the appointment.

So, that is where we are at in the journey. Taking another "arthritis break" for the second time in three years (hopefully longer...hopefully permanent!), keeping up with the eye appointments and checking on these bothersome "floaters," and getting Mia's hearing checked to try to figure out what is hurting/annoying her so bad.

Will keep you posted! 

Three Years: The Fight Thus Far...

I know. It has been a while since I've blogged about what is going on with Mia. I am way overdue for an update...and, this is a long one, but a necessary one. This is my "journal" to keep track of where we are at in our battle against JRA. So, brace yourselves as I bring everyone up to speed on Mia's fight....

But first, let's back up a bit.

Spring 2009 - FLARE!
Mia had a major flare. The worst one yet. And, it was awful! She needed to have the fluid on her left knee and right elbow drained and injected with steroids. We saw immediate results afterwards and the inflammation when down very quickly.

July 2009 - Is It Lyme?
After much research, and a very looooong conversation with Mia's rheumatologist, we looked into treating Mia for Lyme Disease. We have several family members and friends who were diagnosed with Lyme, as well. I have not publicly mentioned this until now because we knew there was a lot of controversy regarding "Is it Lyme or JRA?" BUT, when you have a child who you have to carry all over the house because they can not walk because their joints are swollen, inflamed and their arms or legs won't straighten out, you will do whatever it takes to make the pain stop. The way we saw it was if anything we'd be ruling out Lyme Disease. If it turned out to be Lyme then great, it could be treated. And, this would be over. But, if it wasn't Lyme then we'd know for sure and we could write it off the list and could move on.

Mia took Lyme meds (Biaxin and Plaquenil) for four months (July - October 2009). Her doctor, a Lyme specialist told us, "If it is Lyme, she will have a flare in her joints within 2-3 months from now." Well, that did not happen. Instead, she had a flare when her rheumatologist predicted she would have a flare - about one year after the steroid treatments. So, now we know (and now you know). We can rule out Lyme. Regrets? Nope...not any. Moving on..

October 2009 - Taking a JRA Break
We were able to stop physical therapy and, basically, put JRA on the "backburner" for a while. Mia's joints looked excellent and there was no reason for her to continue her weekly PT sessions. We were thrilled. It was nice to be "normal" and not think about joints, meds, physical therapy, and flares for a while.

Spring 2010 - A Mild Flare...But A Flare Nonetheless
Mia's joints started to flare up again. We started physical therapy up again to help reduce the inflammation. At this time, Mia was still on ibuprofen. In June, her youngest brother was born (yay!) and by August the flare continued. Her father took her for a follow-up appointment to see Dr. Lopez and that is when he switched her from ibuprofen to Indocin. He put her on it for three weeks saying, "If this new med does not reduce the swelling on her joints, then we will drain and inject them again." But, the Indocin worked. And, despite the exhausting side effects this new med has on her (moodiness, iritability, sleepiness - she takes a 2.5 hr nap every day), it has helped to reduce the swelling and fluid on her joints.

Fall 2010 - "Making Progress"
I would like to entitle as, "Why I Am Thoroughly Annoyed By Our Insurance Company: Part 1." And, I am sure I am not the only parent out there with similar frustrations. Our insurance company sent a letter to Mia's PT, and to us, saying Mia was no longer "making progress" and they will no longer cover physical therapy. Wonderful. Isn't "making progress" par for the course?? This is how it has always been: she has a flare and then she "makes progress!!' Through physical therapy, meds and prayer she "makes progress," gets better and then we wait to see what happens. She is constantly "making progress!!!." I'd love to know who made this call. Obviously, it was someone who does not have a clue about arthritis or autoimmune diseases. Bah!

Lucky for us, a grant was offered for Mia to continue PT. She is the first patient to benefit from this grant. If it wasn't for this grant, physical therapy would not be possible right now. God provides!!

October 2010 -Mia's Three Year Anniversary Since Her Initial Diagnosis and...Scoliosis
Yes. Scoliosis. For those "non JRA-ers" out there, let me explain. When a joint is inflamed (in Mia's case, her left knee), it causes increased blood supply to the bone growth plates situated near the joints. This causes that limb (or digit, like Mia's big toe on her right foot that started to become enlarged when she was 15 months old) to grow faster than the other limb. For a long time, Mia's left leg has been 2cm longer than the right. It was never this bad in the beginning, but over time has gotten longer...which, in turn, affects her hips, back, spine, shoulders, etc. Right now, her spine is leaning to the right and her shoulder blade looks sunken in. When she runs, she swings her left leg out and around. And, she skips to hide it....or to hide that she is limping. It is definitely not something that should be ignored.

So. How do you correct something like this? Simple. Put a lift in her right shoe and "voila" she straightens right up. However, even though this is the second time since she was diagnosed that her PT has highly recommended a lift, this is also the second time her rheumatologist has said she does not need it.

And, here is where our frustration lies.

First off, her rheumatologist claims the left leg has to be 2.8cm to qualify for a lift. The PT says, in so many words, "That is a load of crap." Neither she nor her colleagues have ever heard of such a thing (keep in mind Mia is the second patient of hers that our rheumy has denied a lift to; there was another little girl he said the same thing about a couple of years ago and the parents met with a pediatric orthopedist anyways and had the lift put in). The rheumy says, "What happens when she gets used to the lift?" The PT says, "What is worse? For her to get used to a lift OR for her to get used to the scoliosis and used to a shoulder that is up to high and a back that is not correctly aligned and used to swinging her left leg out when she walks?"

(I agree with the therapist)

We did request for her to have another scanogram (bone scan) done to accurately measure the legs to see how much longer the one really is from the other. But, when I asked the rheumy he said that he only likes to do scanograms every two years because every time we have it done it puts radiation into her body. The last scanogram was done in April 2009 so she is up for another one in April 2011. So, the only option he is giving us at this point is to wait, which I refuse to do.

With that said, we plan to see a pediatric orthopedist in Boston to get a second opinion. It is the smart thing to do.

Moving on to her...

Eyes
What a rollercoaster we have been through recently. Mia has gotten her eyes check every three month since she was a year-and-a-half old for uveitis. We never miss an appointment. It is that important to have her checked. Uveitis can pop up out of no where. It is serious and not something to mess with. That is why her doctors are very proactive when it pertains to anything that happens with her eyes. Thank God for excellent eye doctors! Up until now, Mia's eyes have been clear with no signs of uveitis or any other eye ailments. Until...

Saturday, October 23 Mia came back from ballet class complaining that her left eye was bothering her. I kept an eye on it throughout the day. After she took a shower that evening, she said to me, "Mommy, my left eye won't stop running!" Around midnight, I had to go in to her room because she was crying and the left eye was all goopy and crusty. I immediately thought, "Great. Conjunctivitis." Mia had not been around anyone with conjunctivitis, that I was aware of. So, Sunday morning we started erythromicin drops and immediately the goopiness stopped. I remember thinking, "How strange that it cleared up so fast. That's a first!"

And then, on Monday this nasty, irritated blister appeared on the inside of her left eye and it got worse and worse.



By Wednesday, it was horrible. So, I texted one of my JRA mom friends, Joanne (thank God for other JRA parents out there who understand!) and she suggested I email the pictures immediately to Mia's uveitis doctor, Dr. Foster. He responded immediately and said she needed to be seen.

My husband took her in the next day to have her eyes checked and was told Mia has....Herpes Simplex Virus in her eye. Wonderful. Like she doesn't have enough that she deals with already. Dr. Foster told my husband it was a good thing we brought her in because left untreated the damage to the eye could have been very serious.

They did blood work to find out if the virus was in her body. In the meantime, Dr. Foster prescribed Zirgan. And, this is the part I'd like to entitle, "Why I Am Thoroughly Annoyed By Our Insurance Company: Part 2." Because this drug is new to the market and has not been reviewed yet, they wanted to charge us $400 for it! I was on the phone all day with the pharmacy, insurance company and the doctor's office. Finally, a nurse called me back saying she spoke with the insurance company and they would cover it and it would only cost us $50. That is so much better than $400.

November 2010 - Eye Follow-up
She went back in for a follow-up appointment for her eye one week later. They said she does NOT have HSV in her bloodstream. Thank God! However, we need to continue the drops for her eye until they are gone and follow up one more time this Friday. So far, there has been no inflammation in her eyes...no cells, no uveitis. But, they are telling us this does not mean it could not stir things up in her eye. So, we are back on track with our every-three-month schedule.

Well, folks. That's where we are at with Mia's JRA journey - weekly PT every Thursday, Indocin 3 times a day and she still does 1 tsp of cod liver oil to keep the inflammation down in her body. We have not had to put her on steroids because, so far, we have been able to control the inflammation in her body with NSAIDS. She is still on a GF, DF diet. We have allowed eggs back in...because she loves them and they don't seem to affect her. This fall, her doctor and therapist approved two extracurricular activities, which also benefit and strengthen her joints: ballet and swimming. She does both weekly and really enjoys them both! And, we enjoy seeing her pain-free and happy!

In The Meantime...

We will continue to stand and believe for Mia's complete and total healing in her body. And, we will continue to pray for the other children who also have this horrible autoimmune disease. We pray for peace for their parents in making the hard, heart-breaking decisions concerning their child's health. We pray for strength for them and their child(ren) with every injection they have to give their son/daughter so they, too, can be a "normal kid." And, we pray for an answer to put a stop to this awful, puzzling, bone-destroying disease.

“He's your bodyguard, shielding every bone; not even a finger gets broken.” Psalm 34:20

Rheumatologist Visit

Mia had an appointment with Dr. Lopez today. Jay took her because I am on bed rest still....and I am glad I didn't go because they waited two-and-a-half hours to see the doctor! Crazy!

Dr. Lopez looked at Mia's joints and said there is definitely fluid on her knee again. He wants her to continue taking the ibuprofen (2 tsp, 3x a day) for the next four weeks and continue going to PT to try to get that swelling down. If the swelling does not go down four weeks from now then he wants to drain the knee and inject it with steroids again...just like they did last spring.

When Jay shared the doctor's report with me, at first I was bummed. But, then I remembered how well her knee responded to last year's drain and injection. And, the timing is good, too, because she will be officially out of school next Thursday and will have the summer to get this under control before she goes back to school in the fall. She really, really, REALLY wants to take ballet again in the fall. So, we've got to get this knee back to where it is supposed to be.

The most interesting part of the visit was how Dr. Lopez asked my husband to fill out a survey that they are doing of all their patients to find out if diet has anything to do with their arthritis. HELLO!!! I've been saying that since she was 22 months old!! He also mentioned to my husband they are looking into the connection between Vitamin D and inflammation. Again, I've been saying this since day one! It is the reason why we immediately switched Mia over to rice milk after she was diagnosed, despite her rheumy's request to keep her on whole milk. Amazing.

So, we will see how she is doing a month from now. Who knows? Maybe the ibuprofen combined with some PT, getting back on the diet again and the daily teaspoon of cod liver oil will help us like it did the first month of this journey. But, even if it doesn't, I feel good about getting her knee injected and drained. The main thing is that fluid just can NOT sit there on her knee. That is what does the most damage to her joints.

Well, I'll keep ya posted! They did blood work today, too. I am curious to find out what her sed rate is at right now. I'll call in a day or so to find out...