From the very beginning of our journey, we have believed that diet has had a role to play in our fight against juvenile rheumatoid arthritis. We have witnessed it first-hand - when Mia was 22 months old and diagnosed with JRA, we put her on a gluten-free, dairy-free, egg-free diet and added cod liver oil in and within a month her sedementation rate (inflammation in her body) dropped drastically. Doctors and therapists were amazed at how quickly we were able to get her flare under control.
But now, we have two kids fighting the same disease. JJ has only been on NSAIDs since April 2011 (Naproxen and now Meloxicam). But, Mia has been on NSAIDs (Naproxen, Ibuprofen and now Indomethacin) for 4 year now. I know there are worse, stronger arthritis meds out there, but still, that is a long time for a child to be on medicine...every day...twice a day...no breaks....no remissions (yet!).
In the meantime, I am going back to the beginning. Turning over every rock. Comparing their vaccinations, from their first shot to their most recent. And, doing whatever I can for them NOW to protect their bodies from any long-term, potential damage caused by their daily medicines.
So, when a friend suggested I try something new, something healthy for my kids - something that would help their immune systems and their tummies, too - I said, "Yes! Absolutely yes!" While NSAIDs keep joints happy, over time they destroy tummies and intestinal tracts. This isn't anything new. We knew this when we started our journey with Mia. It is in the long list of side effects on every NSAID my kids have taken. However, alleviating their pain and getting the flares under control far outweighs the side effects of their medicines. You do what you can immediately to make them better, fast. But, truthfully, what has always been in the back of my mind is, "What is this going to do to their bodies in the long run? Will there be side effects to deal with down the road?"
I watched the video and I was sold. I knew I could not pass this up. I immediately went out and bought our family some GoodBelly juice!
While we were on vacation, taking a break from life, JJ's rheum emailed me and told me the results of his ultrasounds and x-rays on his joints (elbows, wrists, hands, hips, knees, ankles, feet and toes). She said:
"The ultrasounds showed arthritis in the left wrist and left elbow (as we suspected). The other films were okay, including his neck."
So, based upon this report and the ultrasound he had done this past May on his knees, the results show there is arthritis in the following joints:
- left elbow (fluid sitting on the joint)
- left wrist
- left knee (fluid sitting on the joint)
Praising and thanking God there is no arthritis in his hips or neck!! This is HUGE!
He has been on Meloxicam for the past week now and it is much gentler on his tummy. While it is a stronger medicine, he loves that he only has to take it once a day! So glad to have found something that alleviates the pain in his joints and leaves him with a happy tummy.
Up next: uveitis check-up this Friday at MERSI for both Mia and JJ.
Yesterday was definitely one of our longest appointments at Tufts since we started going there four years ago this month. Jokingly, I told my husband, "We should buy an apartment in Boston to save on gas and parking!"
Hm. Something to consider! ;o)
We got there at 9:30 a.m. for JJ's ultrasounds and x-rays. JJ did a remarkable job! He had to lay completely still for 1.5 hours as they did ultrasounds of his hips, elbows and wrists. How many four-year-old boys do you know who can lay completely still and not move for that long? It took some encouragement from me, but he did it. And, was very happy when it was over. The ultrasound not only shows if there is fluid on the joints, but also shows if there is increased blood flow to the joints, which indicates there is inflammation in that particular joint. An ultrasound was already done on his knees back in April, showing there is fluid on the left. The hips, elbows and wrist were checked yesterday because they are still bothering him, even after he has been on Naproxen for the last several months.
Then we we headed over to have x-rays done of his neck, wrists, hands, hips, knees, ankles, feet and toes. This is what the rheumatologist did when Mia was first diagnosed four years ago and what should have been done for JJ this past April when he was officially diagnosed with JA.
Sometimes, going with your gut and switching doctors really does prove to be the best decision after all.
It was noon when we were finally taking a break for lunch.
Mommy Tip: If you ever have to spend a day at Tufts with two young children, do not, I repeat, DO NO venture into Chinatown to take them to McDonalds. No matter how much they beg.
It is a bad idea.
And that is all I have to say on the matter. :)
After lunch, we headed up to the sixth floor to the Otolaryngology Department for a post-tonsilectomy and - adenoidectomy appointment for Mia and an appointment for JJ for the ENT to check his tonsils. (Keep in mind it is now 2:00 p.m. and both kids have just about had it with their day trip to Tufts!) Mia went first. Technically, this was our second post-surgery visit for Mia. We had to take her back six days after surgery because she started having horrible pain on the tip of her tongue that was keeping everyone up at night. This unusual pain wasn't from the instruments they used to depress the tongue during surgery. That pain would have occurred a day or two after surgery, not six days after and not on the tip of her tongue.
The ENT spoke to the rheumatologist and they both agreed that Mia's immune system was acting up. The pain on her tongue was because she had coxsackie virus (hand, foot and mouth disease). She was hurting more from having coxsackie than from the tonsillectomy! When he looked in her mouth yesterday, he said the surgery site looked great, but she still had some ulcers in the back of her throat from the virus. And, there is nothing we can do for her. We have to ride it out.
We brought JJ in to see the ENT because he has been having eating issues and we wanted to make sure his tonsils were not causing the problem. He will only eat soft foods (pastina, yogurt, applesauce, oatmeal) and hard foods (carrots, apples, chicken nuggets, fries) take him forever to eat and sometime he chokes. He went through a series of questions with us concerning JJ. He asked us: "Does he clear his throat often?" "Yes." "Does he snore?" "No." "Does he get ear infections and chronic colds?" "Yes, in the winter months." JJ gets more ear infections than any of my other kids. "Is he gaining weight?" "No." We told him his rheum noticed that last week at his appointment and is testing him next month for Celiac Disease.
After asking us a slew of questions, the ENT checked out JJ's tonsils and said they are large, but not as large as Mia's were (tonsils peak between ages 5-8). He recommended that JJ should see a Feeding Specialist at Tufts (I am thinking in my head, "Yes, let's definitely start looking for an apartment in the area!"). They would be able to tell if the tonsils were the problem or not. If they are, then they will be coming out. If not, then there is no reason to mess with them.
In other news: JJ started taking Meloxicam (Mobic) this past Monday and really likes taking his medicine only once a day instead of twice.
Up next for JJ: appointment with Feeding Specialist and then getting checked for Celiac Disease next month. We should have the results of the ultrasounds and x-rays back by this Friday/next Monday.
Up next for Mia: 504 Plan meeting for kindergarten with Head Teacher.
Up next for both kids: Uveitis check-ups at MERSI next Friday.
Up next for Mommy: a nap.
This is what I do on the eve of our appointments in Boston.: I stay up. I check on them. I pray for them. I check on them again. And, I don't sleep much.
I have said it before and will say it again, "There is healing in eating the right foods." Especially foods that fight AGAINST arthritis and promote a healthy immune system - like cod liver oil, which my kids take every day.
And, if you still don't believe me, read this chef's story that was featured in The New York Times about his "hero foods."
Incredible!
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!
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.
On Monday, we were told Mia had polyarticular arthritis and JJ had systemic arthritis.
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!
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)
"Are you sure??"
(Deep breaths)
"Two kids? BOTH with arthritis?"
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....
