Thursday, August 4, 2011
Needless to say, it's been a learning and transforming month and a half. Lily fits the description of Mito and FMF and JA. One of the physical symptoms in Mito and FMF is joint pain and arthritis. It is hard to say or know for sure if one is the dominant disease etc... It will take a while to figure out what is the best course of treatment. Ironically, the research and knowledge is really in Isreal.
FMF and Mito are just 2 more rare, odd diseases to have doctors question. Lily is my kid, no health issue is textbook or common.
So, from here it's a waiting game. Waiting to see more concrete tests/symptoms and finding the best team of doctors to properly care for her. I can't imagine living 4 more years of unknowns, misdiagnosis and pain for Lily. ***update..Lily tested POSITIVE for FMF***
To date, Lily has: exteneded Pauciarticular Juvenile Idiopatchic Arthritis, Cyclic Vomiting Syndrome, Severe Carnitine Definincy, Mitochondrial Disease and Familiar Mediterranean Fever Disease. That's a lot for an almost 4 year old girl. I think as time goes on, some may not be accurate and one of the diseases will be prominant. Time will tell, that's what I keep telling myself.
Thursday, June 23, 2011
April 26th we met with Dr. Richard Boles at CHLA (Children's Hospital Los Angeles) He is a genetics specialists. He is interested in Lily because she has so many odd health issues. Lily has regular face/trunk hives and red hot spots that I thought was related to her arthritis. Well, he is just about positive that it is Mitochondrial Disease and not related to the JA. Cyclic Vomiting Syndrome (which Lily has) is also an aspect of Mito Disease. Mito Disease is a genetic disease passed on by the mothers. They drew blood that day and the results take 2 months to get back. So, it's a waiting game. In the meantime, Lily has been diagnosed as having a severe creatinine defincency. Normal levels are 25-84, hers were 0.4. She has started L-Creatine, an energy booster often found is energy drinks. She does not need more energy!!!!
Lily also saw Dr. McCurdy and Dr. Gopen on the same day on April 29th. Her rheumatology appointment was ok...nothing happened (good news and bad news of no new meds) Dr. Gopen did a hearing test that came back better than the previous one. We did however schedule her surgery for tube removal and new ones.
The week after Lily was sick sick sick. What started as an ear infection turned into a UTI, bad cough and then full blown cold. We were at the doctors 4 times in a week because it was something new everyday for a week. We finally got a Nebulizer and that worked wonders at night time.
May 11th, I did a radio interview with Trace Neely on 105.5 about the CPK FUNdraiser. She was amazing, supportive and helpful. I really appreciate it Trace;) She got the word out there about juvenile arthritis and a few people donated because of it. She went back and I introduced Lily to her. I must say, Trace's son is handsome!!!! Trace, I really appreciate all that you did to help raise awareness about JA.
May 12th was the CPK fundraiser benefitting the Arthritis Foundation.
On May 17th, we headed to the hotel by UCLA for her surgery on the 18th. The beginning of the surgery was scary, but ended great. The last time she had tubes put in, she did not come out of anestia well. She came out of this surgery well. I was a happy and relieved mama!!! We came home on the 19th to ensure Lily had a day of rest and no throwing up episodes.
On May 21st, was the annual Arthritis Walk. We loved the walk last year. This year was great. Lily LOVES everyone and everyone loves her. It was another successful walk. I LOVE THE ARTHRITIS FOUNDATION. I love my local office because the ladies there are amazingly helpful and supportive. We didn't raise nearly enough money, but there is next year. Regardless of what money we didn't raise, they have never treated us differently.
On May 22nd, we went to the Strawberry Festival and just had fun. Lily is a daredevil and loved the rides. She was really upset she was too little to go on the big kid ride. She tried to convince me she was a big girl and would like the rides. I'm going to be in trouble if she likes the adrenaline rush that I did :)
All in all, May has been a whirlwind month, with way too many doctor appointments and therapy sessions. However, her health is priority. May has also been a stressful month, but overall fun and loving month for Lily. Lily has played a lot and met new friends. We were able to share the fact that kids get arthritis too...which surprised many people.
Please continue to pray for Lily and her health.
Saturday, April 23, 2011
(Click here to make your own donation)
Thursday May 12th all day!
There will be a raffle with prizes from:
Darin Jon Studio
Coffee Bean & Tea Leaf
Tickets are $1 piece and can be bought in advance or at the event. You do not need to be present to win.
e-mail me for more information.
Be sure to print the flier and bring it with you. We only get credit if you have the flier.
Wednesday, April 20, 2011
It's almost May, which means the annual Arthritis Foundation walk is right around the corner. We are doing it again this year. This year we are hoping to raise more money and get a great team together. Want to be a part of it? Go to www.ccafwalk.kintera.org/lilybug and register and/or donate to her.
Wednesday, March 16, 2011
The video by itself it the video from that morning.
My mom took Lily to her Rheumy. By that time a few days later, Lily was pretty much back to "normal". They were concerned with the video (supposedly) but there was nothing wrong with Lily. There was no explanation as to why her body did what it did. It was hard not being there. Over the phone, I was frustrated. I often feel that most people don't take Lily's physical issues seriously because they don't see them. I feel that way about my mom too who doesn't see Lily much during the course of the day. Just because she is fine for a little bit doesn't mean all the other times she is fine. So frustrating!!!! Lily is the typical "but you don't look sick" kid. Unless you were paying attention, the majority of the time she does look "normal". But if you start to look, you can see her not use her hands and fingers, you see her knees and ankles buckling, you see her limp, you hear her complain, you see her rest and rub her owies. you just see what I see. Am I more sensitive, absolutely.
March was a funky month for her. She was in what most people call a "flare-up". She started having low grade fevers again, stiffness in the morning, days of laying in bed for several hours, warm joints, hives, red hot splotches on her body etc.... I gave her a few short rounds of Naprosyn, that didn't seem to do much. All the rain we had really affected her. It's amazing how rain can make a really mobile child less mobile.
The past 2 weeks Lily has been in heaven. My niece, Delaney, has been here. The last time Delaney saw Lily was when she was hospitalized over New Years. It really bothered Delaney to see Lily like that. She needed to see her normal and happy. Lily LOVES Delaney. We went shopping, went to the beach with another JA family, shopped some more, played at home a lot and pretty much drove me crazy!!!
The next few weeks are going to be crazy. Lily has an appointment with Dr. Boles at Children's in Los Angeles. He is a genetics specialist. We are trying to figure out all the other stuff going on with her. Then she sees Dr. Gopen again (both ear tubes fell out and her speech is still way below normal), then her Rheumy. I am also trying to raise as much money and awareness for Juvenile Arthritis, through fundraisers and the annual walk.
Please feel free to ask any questions.
I hope to update more regularly:)