Why People With Arthritis Should Avoid Nightshade Vegetables.

I know I have posted about this before, but I am posting about it again because I have received several emails from JRA families who are inquiring as to what steps we have taken with Mia to improve her quality of life. Besides gluten, dairy and eggs, we also eliminated the "nightshade family" vegetables from her diet, which include:

• potatoes (not sweet potatoes)
• tomatoes
• eggplant
• sweet and hot peppers (including paprika, cayenne pepper and Tabasco sauce)
• ground cherries
• tomatillos and tamarillos
• garden huckleberry and naranjillas
• pepinos and pimentos

Nightshade vegetables are among the foods that some people feel can trigger arthritis flares.

In the next several posts, I will also share the protocols that have helped our daughter, in the hopes these protocols will help other children out there who are suffering from JRA. Children should have a happy, healthy, pain-free childhood. They shouldn't have to wait until they are in their teens to see if they are of the 82% who outgrow their JRA.

No child should wake up in the morning and be in excruciating pain as soon as their feet hit the floor. No child should be on steriods and NSAIDS for a prolonged period of time. And no child should be robbed of a healthy childhood.

Children were designed to live happy, non-restricted lives. They were designed to climb trees, do cartwheels all over their backyard and be in gymnastics and ballet recitals. For this very reason, we decided to go the natural route for our daughter. We were desperate and willing to try anything to help her. And this has worked for us. Granted, everyone's arthritis is different, but isn't it at least worth a try? I think it is.

Overcoming...Again!

Our appointment with Dr. Lopez went very well today. He said Mia still has some stiffness in her right elbow and bony overgrowth in her left knee and right toe. To people who don't know what to look for, she just looks normal to them. But, Jay and I can see it. We know the challenges she has faced and is currently facing and how the arthritis prevents her from doing normal, every day activities. She doesn't run as fast as the other kids. She doesn't take part in physical activities that other children are interested in. She still has trouble walking up and down the stairs. It will take time, but I believe she will live a normal, healthy life.

The bone scan that she had done last month did confirm that her left leg is longer than her right. Which could be the reason why she still has trouble walking or why she walks so slow and it constantly feels like we are pulling her along when she holds onto our hands. Our friends' daughter who was diagnosed with JRA at an early age is the same way. She also walks verrrrry slow because of the arthritis.

Sooooooo.....here's where we are at now:

SIX MONTHS FROM TODAY if she does not have any flare-ups, if her sed rate remains low (below 19) and if there aren't any other issues (uveitis - inflammation in her eyes), then he is going to start to wean her off of the naproxen. Hooray! However, if anything negative occurs during those six months then that just sets her back from getting off of the naproxen.

As far as therapy goes, he left that decision up to us. He said if we stopped it that we had to make sure that we are doing all of the PT at home with her on our own....something neither one of us has much time for. Or, we could just have Early Intervention come to the house once a week like they have been doing and we could cancel our other PT session with Mary. The only thing that is holding me back from canceling with Mary, besides the fact that Mia LOVES her and she is a really great therapist, is the change in weather in the next several months. We've seen how cold temperatures affects Mia's joints and I would hate to cancel with Mary and then have to call her up again should Mia have a flare-up once the fall/winter season is upon us. And who knows if we will even be able to get in with Mary again!! So, we have a lot to consider regarding therapy. I want to talk to Mary and see if we can go down to once a month just for now....so as to not lose our spot with her.

We are going to actively start adding things back into her diet. I am going to try her with the whole egg this Friday (ack!). I don't want to do it tomorrow only because she has to go to school and I would hate for something to occur there where we can't be there to help her. So, I am going to wait until Friday where I will at least be close by should she have any issues.

After that, I think we will try dairy. Ugh. And I'll save those worries for another day.

Today is a good day - she is in a much better place than she was nine months ago. We have much to celebrate!

Up On Deck...

So, "up on deck" for this week is (drum roll, please!) .......

......another trip to see the rheumy.

We head BACK into Boston (the story of our lives...or at least the past 9 months!) this Wednesday for another check-up. Hey, at least they have a great Au Bon Pain across the street. We've made that our official "hang out" place when Mia has those longer appointments or if we need to grab a yummy snack when our meeting with the doc is over. :)

In other news:
Mia had a great session today at PT. Mary said she is looking really good. Her only concerns are the fluid that is still on her left knee and that Mia seems to be rotating her left hip inward when she walks. Mary took measurements again of Mia's left leg (hip to ankle) and of her knee. Mia's left leg is still 1cm longer than her right. That may be the reason why she is turning inward when she walks. Other than that, she said she looks good! She told us to inquire with her rheumy if she still needs PT or not. Wouldn't that be nice!

Foods revisited:
Because Mia's sed rate was so low at the end of May, we have decided that now would be a good time to start trying to add things back into her diet. So, we started with egg whites about a week ago. So far, so good. The only thing I am concerned about is that Mia has had bad diarrhea in the last week or so (again yesterday). I am thinking it is related to the egg whites because it is the only new thing we've added into her diet. So, we shall see. I haven't tried giving her the yolk of the egg yet because if anything is going to cause a flare it will be that. So, perhaps one day, when I am feeling ultra brave, I will offer her the whole egg. We need to figure out this diarrhea thing first, though. Kind of interesting that she has symptoms like this when she is on THREE meds that are VERY binding. Ugh...who knows!

More later on our trip into Boston...

Friday's Checkup

For those who have been keep up with my updates concerning Mia, this past Friday I took her to her three-month checkup with the eye doctor. Her doctor took a peek in her eyes and confirmed, once again, there is absolutely no inflammation in either of her eyes. This is wonderful news!!

We go back in September for another examination.

Unfortunately...

As many of you know, this is my personal journal/log of all the JRA-related events that have occurred with Mia. Yes, I blog about the good things, but, for my own record, I also blog about topics that may not be suitable for those readers who have weak stomachs. So, this is your warning. If you are that type of person (like my husband...heh heh!), then don't read this entry. :)

Yesterday morning, Mia had some blood in her stool. So, I paged the rheumatologist. He has been wondering if she's had G.I. bleeding all along. Her hematocrit level is still low, and this has caused him to wonder "Why the sudden drop when she was doing so great up until now?!?" So, he told me to take her over to her pediatrician's office to have them examine her to rule out if it is a tear (anal fissure) or not. If there isn't a tear, then he wants her to be seen by a G.I. specialist, in which they will probably have to sedate her and take a look inside. Great.

At the ped's office, the doctor (not Mia's regular ped...he was off that day) examined her and said there is a "suspicious area" that was very small, not irritated and the same color as the rest of the surrounding skin. She said it was hard to tell and advised us to wait a day to see if there was more blood. She thinks it would be best if we made the appointment to see the specialist to rule out any G.I. bleeding. This wouldn't hurt, but at the same time I don't want to put her through any unnecessary procedures if we don't have to. :o\

So, we are waiting for the next time she has to go to the bathroom to check to see if there is more blood. And then we will go from there. If it is internal bleeding then we will most likely have to take her off of the naproxen...which is a whole other issue for a whole other blog.

Moving on...

New OT: Ugh...not so sure about this one. She isn't actually an OT either...she is another PT. We already have a PT who Mia loves. We need an OT. Not to mention this new woman doesn't seem to interact with Mia...at all! So, I've voiced my complaint...stay tuned.

Eye Exam: It's that time again. This Friday Mia goes back in to the eye doctor to have them check for uveitis. We are believing for another good report! :)

Current meds/supplements:

• Naproxen (7.5 mls; twice a day)
• Zantac (2 mls; twice a day)
• Ferros Sulfate Elixir (1/2 tsp.; three times a day)
• Cod Liver Oil: (1 tsp.; once a day)

PT got moved to Wednesday this week because Mia has/had laryngitis over the weekend so I had to cancel her appointment on Monday. They wanted to put her on amoxicylin for the laryngitis, but I am waiting this one out. She is on enough meds right now as it is. Why add one more to the mix if we don't need to? Her immune system is already at a weakened state - why make things worse?

So, that's this week in a nutshell. Will update everyone soon on the blood issues.

Not Your Average Gluten-Free Menu!

One of my favorite restaurants out here in the northeast is "Not Your Average Joe's." They have wonderful foccacia bread that you dip in olive oil, parmesean and crushed red pepper flakes. It is very yummy! The atmosphere is very modern and their menu contains a variety unusual and tasty flavors. I have never gotten a bad meal there yet.

Well, one of my dearest friends, Amy, recently told me NYAJ has a GF menu now, and a GF kid's menu at that! You have no idea how thrilled my husband and I are. No idea! We have not been to a restaurant with Mia since she was diagnosed last October because, frankly, why put her through that? Why surround her with things she can't eat and then have to explain to her exactly WHY she can't have those things right now? She's only two-and-a-half. Will she understand? Probably not. And that's not a fun dining experience for her or for us.

And why some people can't understand why we don't dine out as a family right now, we have decided this is what is best for Mia. Not many restaurants have a GF menu. And many GF menus contain dairy or eggs, two other things we are staying away from at this time. We truly believe that being on a GF diet is one of the reasons why Mia is doing so well right now and if that means we need to make some sacrifices by not going to restaurants for the time being then that is what we will do. And it is a small sacrifice to pay for our daughter's health. Yes, we miss going out to restaurants as a family, but I would rather know exactly what is in my daughter's meal so she isn't at risk for a flare-up. We've been down that road before - last November she was at a birthday party and ate a lot of something that she shouldn't have, and the next day should could not walk. Since then, we have been very careful with her diet. We aren't going to make the same mistake twice.

So, three cheers for Amy for this wonderful find! Thank you! Thank you! Thank you! :)