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!