Joint pain...

I received a phone call from Mia's school today. They said she woke up from nap time crying and holding her knees and saying that her knees hurt. So, they held her for a bit and tried to comfort her...and then ended up calling me at work.

She did tell me this morning at breakfast that her knees hurt, but sometimes it is hard to tell with her. I didn't question her about it and probably should have. I didn't physically check her out and I probably should have. She's been doing so well lately. And it is hard when you have to get everybody dressed, fed and out the door so you can get yourself to work. I was a bad mommy today for not paying attention.

She just changed classes from the two-year-old class up to the three-year-old class. So, I have to re-inform her new teachers & aides of her health issues and special diet. It is like starting from the beginning again. And I have been avoiding it. Because I am tired. And some days I wish this was all over with.

Her new teacher was very kind on the phone. She asked what they could do to help and what they should do in the future if she has a flare. I told her I will bring in her rice pack that they use on her during her PT sessions. They can put that on her knee(s) to warm them up after nap time before she jumps back into playtime. I am hoping today was just some mild stiffness from just waking up from her nap (and that this morning's incident was just morning stiffness...nothing more than that!). They said she seems to be doing better, but they were very concerned. It is hard to tell when you aren't there to actually see her and know what is going on. Her teacher told me this class is much more active than Mia's previous class, so perhaps she just overexerted herself today? That's my guess.

Perhaps she is having pain because we've introduced eggs back into her diet? I don't know. Hopefully, she is better when we pick her up from school today.

I stumbled across this picture of her today. She was 3.5 months old here....hard to imagine she will be 3 years old in just a few months. In such a short amount of time she has gone through so much.

Heh heh...I loved this outfit! Her Grammy and Papa bought it for her. It reminds me of something my mother would have put me in. I was always dressed in red. :)

Sweet, sweet baby girl. We love you so much!

Autoimmune Ailments: Suggested Diet Plan

This was given to me by a family nutritionist. The diet plan was created for adults so I modified it a bit to make it more kid-friendly (come on...how many kids are going to eat salmon or sardines?!?!). Also, based upon my research, there were a few items that were included in the diet plan that are on the "No No List" for inflammation. Keep in mind, this is just a suggested meal plan.

Autoimmune Ailments
(Colitis, Crohn’s Disease, Type I Diabetes during onset, Hashimoto’s Thyroiditis, Lupus, Myasthenia Gravis, Rheumatoid Arthritis, Multiple Sclerosis, Scleroderma, Sjogren’s syndrome)

breakfast

• 2-3 omega-3 eggs any style, grilled sweet potato or sweet potato pancakes with maple syrup, strawberry-kiwi iced herbal tea
• Reheated leftover chicken or turkey or other meat, 1 fruit
• Smoked or leftover salmon, sweet potatoes with rosemary, green tea
• 3-4 Tbsp. freshly ground almonds with other nuts and seeds (flaxseeds, pumpkin seeds, dried coconut) and 1 tablespoon maple syrup in food processor, herb tea iced/warm
• Organic almond butter (Maranatha) on a celery stick

lunch and dinner

• Buffalo, turkey burger or lean hamburger with lettuce, tomato and cole slaw. Ketchup, mustard and pickle relish may be used if desired
• Beef stew (Beef, assorted vegetables, wheat-free soup stock, herbs and spices)
• Broiled red snapper with Shiitake mushrooms, steamed broccoli, green salad
• 5-8 ounces broiled salmon, tomato sauce w/oregano, thyme, garlic, grilled vegetables, roasted parsnips, Caesar salad
• 1 free range chicken breast with rosemary, roasted onions or garlic, spinach salad.
• Fillet mignon, baked/grilled sweet potatoes with rosemary and olive oil, steamed asparagus, salad with flaxseed dressing

snacks

• Handful of raw assorted nuts, roasted garlic or almond butter on celery, organic fresh or dried fruit of any kind, Cascadian farm organic Sorbet or fruit pops

beverages

• 8 oz. Fresh mixed vegetable juice 1-2x per day
• Green drinks: Green Magma, Kyogreen, or Green Kamut: 1 tsp. 1-3x day in water
• Herbal Teas: Licorice, Slippery Elm, Chamomile, Ginger
• Spinach Smoothies

eliminate grains
Eliminate wheat and the other three gluten containing grains: oats, barley, and rye. Wheat is found in bread, breadsticks, rolls, cereals, pasta, crackers, cakes, cookies, and most cereals. Avoiding all grains (including rice, millet, amaranth, etc.) for three to six months is recommended if possible as well. Then, after 3-6 months, reintroduce rice and wild rice, millet and other non-glutinous grains to see if the patient can tolerate them.

eliminate dairy products
This includes milk, butter, kefir, cheese, and even soy cheese products containing the milk protein casein. Yogurt may be tolerated in small amounts because the lactic acid in the yogurt denatures the proteins that may be allergenic in other dairy products. Whey protein may be tolerated, as it does not contain casein.

also avoid
Beans, lentils, yeasted foods, blue cheese, tempeh, tofu, soy protein isolate (these soy products contain alpha-gliadin), peanuts, citrus fruits, sugar, alcohol, caffeine, hydrogenated and partially hydrogenated oils, and safflower, sunflower and corn oils

suggestions and goals
The goal is to remove all foods that may be triggering the body to attack its own tissues. Researchers believe that one of the possible causes of autoimmune ailments is certain foods that are new to humanity (grain products, dairy products, lentils and beans, and yeasted foods) which have only appeared in the past 40,000 years. Meats, nuts, vegetables and fruits have been eaten for over 2 million years. Therefore, returning to a diet that is made of meat, nuts, and produce may remove one of the main offending causes behind autoimmune problems. It can take 3-6 months to assess whether this program is effective.

If possible, get a moderate amount of exercise, 20 minutes of sunshine per day, a good nights sleep. Take epsom salt baths 1-2 times per week. Add 4 cups of epsom salts to a warm bath and stay in for 10-15 minutes.

supplements (these are adult dosages...not for kids!!)

• Acidophilus and Bifidobacteria// 1-3 teaspoons of powder (Natren)
• EPA/DHA// 1,000-10,000 mg (1-10 Tbsp. Super Max EPA)
  (approach doses above 5 g/day with close supervision)
• Glutamine// 1-5 grams
• GLA 240// 1-3 capsules
• Flaxseed Oil// 1-3 tablespoons
• Vitamin C// 1-3,000 mg
• Vitamin E// 400 IUs
• Selenium// 200-400 mcg
• N-Acetyl-Glucosamine (NAG)// 300-900 mg
• Bovine cartilage// 9 grams/Twelve 750 mg capsules/day (Vita Carte)
  (use with caution—may overstimulate immune system in some)
• Magnesium// 400-800 mg
• Siberian Ginseng Extract// 50-200 mg of powdered extract or 1-2ml of liquid
• Olive leaf extract// 1-3 capsules per day

rheumatoid arthritis:
Curcuminoids// 400-1,000
Quercetin// 300-900 mg

Those with rheumatoid arthritis should read "The New Arthritis Breakthrough" by Henry Scammell. Highly recommended reading: The Tao of Immunity by Dr. Mark Lappé. Also, "The Maker's Diet" and "Patient Heal Thyself" by Jordan S. Rubin

Saying Our Goodbyes...

We met with Mary today. While it was a good appointment, there is still some areas in Mia's body that need help - her left knee was puffy underneath her kneecap and her right elbow is still very bent. Mia still has a hard time rotating her right arm so that her palm is facing upward. While these are minor things compared to what other children may be dealing with, they are still issues that prohibit Mia each and every day.

However, Mary agreed with Mia's rheumy that she is in a better spot than she was several months ago. SO....we are reducing her PT to once a month, unless she has a flare. Mary said many kids do well and then return later on down the road if there is a flare. If this happens to Mia, Mary said all we need to do is call them up and let them know. Since Mia has already been seen by them and has a history with them, she will be placed at the top of the list to be seen. Mary said this is their protocol for all JRA patients. Which is very nice...and, as a mom and the one who is in charge of and attends all of her appointments, this brings me much relief. But, for now, we are going to hold onto Mary and see her once a month. Her concern (and mine) is that Mia may be affected by the cold weather in the next several months. So, we don't want to discontinue completely in the event that she experiences any pain from the weather, like she has in the past.

So, for now, we said "goodbye" to Mary...until next month. Mia was very sad, but I explained to her that she won't be saying "goodbye" forever...just for a few weeks. So, we have given up our much-coveted, 10:00 a.m. morning slot and now we have to call ahead and just take whatever cancellations they have available.

With the cold weather approaching (*sigh*) and as an alternative to PT, we are going to look into aquatic therapy for Mia for the fall. This will help keep her joints fluid and her rheumy said many JRA patients have benefited from it. The only problem now is finding a pool. I checked with EI and they said they don't offer anything through their program. There are three pools in our area: one is about to close, and the other two don't do pediatrics. However, there is a center in Salem, NH that has a pool. I am going to contact them this week to see if we can get Mia on their list. If I can find a pool for Mia, then we need to contact our insurance company and see if they will cover it because most of the time they will only cover aquatic therapy OR PT. Not both.

In regards to OT, well, the new OT really isn't an OT...she is a PT. And we already have a PT. And while we love the social worker who works with Mia's language skills. frankly, I have NO idea why she has been assigned to have help in her social skills. On her initial eval when Mia was 22 months, she scored at a 26-month-old level in language/speech skills (surprise, surprise!). I think we all know that Mia can talk...and talk WELL! I guess they heard her throw in what they call "jargon" in the middle of her sentences and they consider this to be a speech delay. HA! My daughter has no type of speech delay whatsoever. To be sure, I asked her PT today if she thought Mia had a delay. She laughed, too. She said that Mia's language and cognitive learning skills are where they should be and that definitely does not have a delay. I had to be sure. I am her mother and I can understand EVERYTHING she says, even when it is mixed with "jargon." it is nice to have it confirmed by someone who only sees her once a week.

So, I told Cheryl (social worker), that we want to reduce our services. To which she told me that they, too, can do the once-a-month thing, but that only one therapist can attend. So, I told her, in a way as to not hurt her feelings, that since Mia's diagnosis requires more physical therapy than social, that we would go with Stella.

So, Stella will be visiting once a month. And Mia had to say "goodbye" to Cheryl. I think Cheryl almost cried. She hugged Mia for a very long time. It is hard when a child and a therapist develop a relationship and then have to say "goodbye." It is even hard for the parent(s). Cheryl has been working with Mia for almost a year now! But, Cheryl will remain the service coordinator and when we meet with the public school system next month we she will attend those meetings to help transition Mia over to their program. We are definitely going to continue to pursue getting her in with the public schools because their services are free and, should Mia have a flare, we will have another resource to fall back on.

While Mia is doing very well right now, I need to keep in mind that the JRA is not totally gone. It has not completely left her body yet. To many who know her, she looks fine. But, I know what to look for and what she still struggles with and there is still a battle to fight. I am reminded of those parents whose children had JRA when they were Mia's age and when they were a bit older experienced an unexpected flare which put them back at the beginning again (and on stronger meds the second/third time around). While are a hoping for the best and believing for a good report in October when she returns to the rheumy, we are also reminded that we need to continue fighting until she is completely JRA-free. And she will be...one day! :)