We ARE Overcoming!

Mia had her scan-o-gram done this morning at NEMC. She did a very good job and hardly even cried! We will get the results back in the next day or so.

In other news, we are VERY HAPPY to announce that Mia's sedimentation rate is back down to normal!! When she was initially diagnosed this past October, her sed rate was very high (41), which was one of the indicators that there was inflammation (arthritis) in her body. A normal sed rate is below 19. Mia's sed rate is currently at 15!! Praise God!!!

Dr. Lopez said her range looks great. She still has some fluid on her left knee and in several of her toes and her right elbow isn't as straight as it should be. But, overall, he was very pleased with the progress she has been making. So, we asked him that since her sed rate is back down to normal if she is in "remission" now, but he said "no" because there is still some fluid on the joints and that there is no way to test if arthritis has left the body or not.

Right now, his main concern is that she still has a very low hematocrit level. He told us it is one thing when your iron level is low, but when your hematocrit is low, as well, this is cause for some concern. So, he put her on a prescribed iron supplement three times a day for the next month. He said that putting her on something like a Flintstones multi-vitamin with iron isn't enough because her levels are so low that they need to "jump start" her levels again to help get her to where she needs to be. He was very thrilled to hear she is eating her spinach, though (see "Going Green"). :)

The other thing that was very low was Mia's ferritin levels. She should be at 15 and she was below 5. So, that needs to come back up, too.

After the appointment, he sent us to the lab to have them do more blood work (EIGHT vials!!!) to test for many different things to find out why her levels are so low. Her three stool samples from this past weekend came back negative for G.I. bleeding, but he said that doesn't mean there isn't bleeding in the lining which could be why her levels are so low. The other reason why her levels may be low is because she could have a blood disorder where her red blood cells are attacking one another. So, they are checking into it and we will get those results back soon.

He said she does not have to wear the leg brace right now, but wants us to continue with the naproxen. Since she is still on the naproxen, he also put her on Zantac to help with her stomach lining just in case there is any future G.I. bleeding.

We go back for a follow-up appointment on 7/23/08 where they will check her levels again. All-in-all it was a very good appointment. At the end of the appointment we spoke with him about the communication issues and he said that from here on out we should just call him directly. And to just call him even if we are unsure about something. Despite the communication issues that occurred this past month, he is a very good doctor. Mia really loves him and he is great with her. We also signed a waiver allowing him to email us with any important information. So, from here on out, even if I get a call from the pediatrician instructing us to do something that Dr. Lopez told him to tell us to do, I am still going to call Dr. Lopez to make sure this is what he wants us to do. Better safe than sorry!

Up next: Since her sed rate is normal now, we are going to try to slowly start adding things back into her diet in the next couple of weeks to see if the cause of the inflammation was diet-related. This should be interesting!!

Thank you to everyone who has been praying for Mia (and us). We are seeing God's Word working mightily in her body. And a very special "thank you" to Mia's dear friend, Alizée, who dropped to her knees in her living room this morning and started to pray for her friend! God definitely heard her prayer!! :)

Pomegranate Juice Could Help Fight Arthritis

By Kate Devlin, Medical Correspondent
Last updated: 1:29 AM BST 13/06/2008

A glass of pomegranate juice a day could help fight arthritis, scientists believe.

Studies have shown that extracts of the fruit can reduce inflammation in the body, one of the most common triggers of the disease.

The team behind the study, published in the Journal of Inflammation, believe that pomegranate could have the same effect on humans.

If true, it could point the way to a new treatment which could avoid the side effects of current anti-inflammatory drugs, which can include nausea and bleeding in the stomach.

The scientists, from Case Western Reserve University, in Cleveland, Ohio, gave extracts of the fruit, equivalent to a 175ml tumbler of pomegranate juice, to rabbits.

They then tested the level of activity of certain proteins known to trigger inflammation in the animal's blood.

They found that the pomegranate extracts had inhibited the activity of many of the proteins, some by almost half.

It also raised levels of antioxidants, which can also reduce inflammation, in their blood system.

Previous experiments had shown that in laboratory tests pomegranate extract could reduce inflammation in samples of animal tissue, but it was not known whether the fruit could produce the same effects in living creatures.

The researchers believe that the study indicates that eating pomegranate or drinking the juice of the fruit could have a beneficial impact on arthritis, which affects more than 8 million people in Britain.

Tariq Haqqi, who led the study, said such a treatment could also avoid the side effects that can come with long-term use of current anti-inflammatory drugs.

However, he said that further research was needed on how well the extract is absorbed into the blood stream.

Story from Telegraph News:
http://www.telegraph.co.uk/news/newstopics/politics/health/2116833/Pomegranate-juice-could-help-fight-arthritis.html

Going Green!

Mia's third round of blood tests showed she is still very anemic. And we are still waiting to hear back about the results of the stool samples...

So, since we need to get Mia on an iron supplement immediately, but are looking to go the "natural route," as opposed to giving her a Flintstones vitamins (loaded with sugar and tons of artificial ingredients), we stopped by Whole Foods this past weekend to see if we could find something there. We weren't able to find an "all natural" iron supplement for kids (also a gluten-free, dairy-free, eggless one), so I called our friends, the Antonellis, to see what they recommend. My friend, Georgiann, sent me this great recipe for a spinach smoothie - something she and her family (even the kids!) drink together every other day. Her daughter, Faith, loves it!

Well, low and behold, so does Mia!! I made a huge batch for all of us. My husband loved it so much he asked for seconds! We will definitely be adding this to our evening meal plans (every other night). It is even sweet and tasty enough to spoon feed to an infant. I can't wait to try it out on JJ. :)

I have also started giving Mia rice cereal in the morning which contains a ton of iron (45%). She then takes her calcium at lunch time - you can't take calcium and iron together because the cancel each other out. And then we are doing the spinach smoothies in the evening with dinner.

Anyhoo, here is the recipe for all of you out there who are also in the same boat as we are - fighting JRA the natural way!

FRUIT SMOOTHIES

• 1 banana
• 1 cup carrot juice (Costco & Wal-mart have the cheapest prices on Bolthouse Farms Carrot juice)
• 1 cup other juice (Orange Juice, cranberry, apple juice or grape; grape is the best)
• 2 cups fresh baby spinach already washed
• Frozen strawberries (Costco has beautiful large flash frozen strawberries)
• Frozen blueberries (Costco has a flash frozen blueberry, raspberry and marionberry blend that is wonderful)

Add the first 4 ingredients and blend really well. Then blend equal amounts of blueberries and strawberries adding a little at a time. Keep the blueberries frozen to make the smoothie cool and thick. Defrost the strawberries a little so the blender doesn’t have a hard time mixing. Rich with natural sugars, fiber and antioxidants. One blender full makes enough for a full glass for our whole family.

Can be frozen into popsicles for kids.

So, you see, it is possible to get your kids to eat their spinach! ;o)

Our New Friends!

Here are the pictures of our visit with our new friends, the Antonelli family. Faith, who is a couple years old than Mia, was also diagnosed with JRA at a very year age, as well. It was a very memorable evening with a very wonderful and sweet family (and delicious food...thank you, Georgiann!). I am so grateful that God allowed our paths to cross. We owe so much to this family. They have been a huge encouragement and blessing to us...more than they even know.

We look forward to many more visits with them in the future!

Faith and Mia playing and laughing together.

Faith shows Mia the pictures she
and her sisters made for Mia.

Two new friends. :)

Vacation, A Mysterious Rash, and One Absurd Day.

Well, we were on vacation for two weeks visiting my parents in Michigan. A lot has happened since then and many changes are in the works. Here's a brief summary to get everyone caught up:

1. End of May: This story is a doozy. Brace yourself.

Three urgent messages were left on our voice mail at home from Mia's rheumatologist the day after her appointment with him on 5/26. The last message told us to call the pediatrician's office immediately for more information. Nice...a very urgent and uninformative message! Apparently, something was low in her blood work and he wanted us to take her back in immediately to her pediatrician to have the blood work done all over again and to bring a stool sample with us. Nothing more was said...to us or to the pediatrician's office. After receiving a message like that, we were a bit concerned.

So, I took Mia in immediately the next morning to the pediatrician's office. I left messages all morning for Dr. Lopez. And heard nothing. Finally, I had him paged around 3:00 p.m. to find out what was going on (why couldn't he have just relayed the information to the pediatrician's office?!?!?!) Grrrr! The first thing he asked me was if I had stopped Mia's naproxen yet. WHA??? Well, if someone had left a message for us to do so then we would have. Sorry...just a little frustrated at this point. Now my mind was racing. He proceeds to tell me there is a possibility of Mia having G.I. bleeding from the naproxen (lovely...he just increased her dosage, too) and that the blood work and stool sample would give them a better idea of what is going on.

Great.

Later on that day, the pediatrician's office calls me back and tells me that she doesn't have G.I. bleeding...she is just anemic (or, as Mia says, "ameeemic"). Phew! All that craziness for nothing. So, they are going to give her an iron supplement to help with that. And they told us to continue with the naproxen.

Which brings our story to the present chain of events which occurred this past Thursday.

I was supposed to receive a phone call from Mia's pediatrician's office the week after her initial blood work to discuss an iron supplement for the anemia. Three weeks went by and I didn't hear anything from them. Granted, we went on vacation for two weeks, during which Mommy's mind went on vacation too...especially to those things which were JRA-related. I needed a break!! So, the Thursday after we returned I called her doc's office to inquire. And this is where the story gets VERY absurd...

• The ped. office tells me to start her on an over-the-counter iron supplement.
• They then call me back later to say that the Ped. talked to the Rheum. and he wants to know why we didn't stop the naproxen weeks ago? WHA?!?!?!?!?! We were instructed to continue it after the results came back that she was only anemic and there wasn't any G.I. bleeding and that they would call us to discuss the iron supplement the following week.
• So, now we are being told by the Ped. who is receiving emails from the Rheum. that we are to stop the naproxen immediately and get her on an iron supplement.
• A half-an-hour goes by and I get another call. This time the Rheum. emails the Ped. and says to tell us (OK....WHY CAN'T YOU JUST CALL THE PARENTS DIRECTLY?!?!?!?!) that Mia needs to go in immediately for more blood work and to bring in another stool sample. No further information is given as to WHY we need to bring our child in again for a third round of blood work. Yeah, I was about to blow at this point.
• So, I tell the ped. office that before I bring her in again, I need to speak to the Rheum. to get more information as to WHY she needs to come back in.
  
• I get on the horn with the Rheum. who I have to have paged because "he is 'off site' today." He calls me back. It's not a pretty conversation...so I'll leave it at that. Bottom line, he tells me that Mia's second round of blood work also showed that she still has "lowered hematocrit levels," which means there is still a chance she has G.I. bleeding. Great...we've had her on naproxen for the PAST THREE WEEKS since we were instructed to continue it!!
  
  He then proceeds to tell me they need to do a round of THREE tests in order to rule it out, in which case, we need to bring in THREE stool samples. That's funny, the ped. office told me on the phone that it was just ONE stool sample. And I love how we are hearing about this for the very first time....three weeks after the second round of blood work. At the end of our conversation, I asked him what we are to do about the naproxen and he tells me to keep her on it. OMG! After all of that...after being scolded on the phone because we didn't take her off of it three weeks ago...he tells me to keep her on it.
• So, I took Mia in for the blood work this morning and dropped off round one-of-three of the stool samples. Despite the fact she was not to happy to learn that she was going back in again for more blood work (she is WELL aware now of what that means!), she managed to make light of the situation. I overheard her telling her father that she was going back to see Dr. Maddox and "the beetle!" I told her, "No, Mia. It isn't a beetle. It is a needle!" She tells me, "No Momma...it's a beetle." Too funny!
  
• We have an appt. with the Rheum. on Wednesday (6/25) where we will all sit down together and have a nice heart-to-heart. :)
  

Lesson learned: You are your child's advocate. You are their voice. It doesn't matter if their doctor(s) get annoyed by your phone calls. It doesn't matter if they get impatient when you have them paged when they are "off site" (golfing? hmmm...perhaps.) so you can get to the bottom of things. What matters is that you get the correct and accurate information the FIRST time around.

And to think, we wouldn't have found ANY of this out if I hadn't called to inquire about an iron supplement. Come on people...do your jobs!!

Moving on...

2. Mysterious Rash: Two and a half weeks ago, after wearing her brace to bed one night, Mia woke up with a rash on the inside of her left knee...the joint that is affected. It is right on the spot where she has some boney overgrowth of cartilage due to the JRA. At first I was hoping it was just a heat rash of some sort, but we've put neosporin on it and hydrocortizone and neither one of them have helped. Her rheumatologist and pediatrician have been asking us since her initial diagnosis if Mia has had a rash or fever because those are some of the symptoms of systemic JRA.

I know there are several of you who read my blog who have children with JRA. Have any of your children ever had a rash?!?! Any help or insight would be greatly appreciated. Mia has never had a fever with the rash....just inflamed joints and now this "mystery rash."

Her rheumatologist told me that he believes it is definitely related to the arthritis, but he will know more when he takes a look at it on Wednesday.

3. New OT: I am very sad to announce that Mia's OT, Kelly, will not be able to continue her services. Kelly is due soon with her first child (hooray!!) and has decided to not return to work after the baby is born. Mia will be very sad to find out that Kelly won't be coming to visit her anymore, but we are very happy for Kelly. She was a wonderful OT and Mia loved visiting with her.

On Monday, Mia will be meeting with Stella, her new OT, for the first time. First off, I just want to say that I LOVE her name!! I am hoping she is as fun as her name is! Ha! :) During this meeting, we will be discussing Mia's transfer from Early Intervention into the public school system's services starting in December 2008. Mia will be three-years-old at that point and E.I. does not provide services past the age of three.

4. PT: Mia will still be meeting with Mary on Mondays. Mia LOVES Mary. :) You know your child has a great PT when they go away on vacation and all they can talk about is going to see their physical therapist! :)

5. Overall: We had a great vacation! We got to have dinner one night with our friends, the Antonellis, at their house whose daughter, Faith, had JRA. It was so much fun! They have three adorable, little girls - Grace, Faith and Hope. From the very first moment that Mia met Faith you would have thought they were sisters. These two little girls are so much alike. It was amazing. I just sat and watched them play together and I could have cried - two beautiful little girls with such amazing and bubbly personalities fighting a horrible chronic illness. And it really made me think - I truly believe that God gave both of them their delightful and upbeat personalities for a reason. He knew before they were born what they would face early on and He knew that by giving both of them "merry hearts" it would be like medicine to their bodies (Proverbs 17:22). God's Word is working in Mia's body and in Faith's body! :)

They have such a beautiful and blessed family and it was great to sit and talk with them while the kids played. And JJ loved being around all the girls!! :) I will post pictures soon of our visit with them. We look forward to many more visits and play dates with them when we are in town.

6. Up Next: Mia has her "scan-o-gram" scheduled for next Wednesday morning at 9:00 a.m. She will be meeting with the rheumatoligist afterwards. He spoke with Mia's pediactrician today and said that he believes that the rash is related to the JRA, but won't know until he takes a look at it. Please continue to pray for Mia and agree with us for a good report next Wednesday.