New news

June and July have been weird months.  We got back the blood test results from May.  Lily more than likely has Mitochondrial Disease (Mito) and Familial Mediterranean Fever Disease (FMF).  FMF is a very rare genetic disease.  It is generally found in ethnic Jews and people from the Mediterranean area.  Lily obviously doesn't fit that catagory.  My mothers family is mid-Western and Mike's family is from the south.  I had never heard of either disease before the appointment with Dr. Boles.

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.

May

Here is what happened in May (and the end of April)

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.  

FUNdraiser at CPK May 12th

Join us at CPK in Paseo Nuevo and chow down for a good cause. Bring the attached flier and CPK will donate a portion of the money to the Arthritis Foundation.
(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
Target
Vons
Whole Foods
and more!!
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.

It's walk time again!!!!

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.

Here are a few pictures from last year. We had so much fun:)

Here are just a few of things coming up:

On May 12th, there is a FUNdraiser dinner in Santa Barbara and a raffle. We have some great raffle prizes already and more are being added.

The walk is May 21st, at SBCC. Join our team or donate. It's easy and the money goes towards a great cause.

Feb 27th, Lily not walking well

It's been a long time...updates on Lilybug

I have been wanting to post for months, but haven't had access to a computer or a few minutes to think. I can't believe I haven't blogged in several months. SO much has happened. Lily was hospitalized in September for a week, which ended up doing far more damage (mentally to me) than good. The week pretty much stopped me in my tracks and I got pretty out of sorts. The beginning of October, I took her off all her meds to see what her body would do naturally. She has been sick pretty much since she was a few months old. She had been on way to many meds that her body was so confused. She took more drugs to fix the side effects of the drugs she was on. Then when we added a new med to counteract an aspect of the side effect med, it was getting out of hand. Besides, who wants to fight a 3 year old several times a day to take meds? Not me!!! She got to the point that she wouldn't eat or drink anything because I had stuck her meds in everything possible. She did ok for a bit. She would have good days/weeks, and bad days/weeks but nothing that really was significant (at least to her Rheumy, not me). Around Christmas time of 2009, Lily was sick. She threw up dozens of times. The Christmas of 2008 she was sick as well... This Christmas, we were waiting for something to happen. She had a bad cough that just wasn't going away. I took her to her Colleen, her nurse practitioner that I ADORE, and everything seemed normal for a bad cough. The night of the 29th, I became worried. Lily's coughing turned to wheezing, Lily was a limp noodle and there was no help in sight. Lily has always been a kid that needs IV fluids to perk her up, even though most hospitals now insist they be given oral fluids. I finally took her to Cottage in Santa Barbara. It was a drive, but she had never been to the hospital in Ventura and it was the wrong time to look insane. Thankfully, once she was finally seen, the doctor gave her fluids since I demanded it immediately and Colleen had called it in and it was on record. Within an hour of fluids, Lily was jumping up to hug and play with the cute doctor. They did the RSV test, which came back positive. She also had a spot on her lungs; pneumonia. CRAP was my thought. Why did Lily have to have so much crap going on in her little body. Who did she get it from, who did she pass it on to? I was really concerned that she couldn't take the vast majority of antibiotics and what would this do to her already compromised immune system. I finally got her home, only to have her throw up a few times the second I walked in the door. She once again became a limp noodle. I called the ER back, and they said to stay home and see what happens. Lily slept with my mom that night since I was exhausted. Twice my mom called me to listen to her breathing. It was downright awful. I went back to sleep since she was sleeping. Just a few short hours later, I woke up to hear Lily wheezing. It was a scary time. Given all of Lily's medical issues, breathing has never been an issue. Her chest was raising and lowering dramatically. Her wheezing/breathing was not normal. I recorded it and sent it to Colleen . She heard it over the phone and told us to go back to the hospital. I called the hospital again who was not so keen on the idea. So I took her to Sansum Clinic (where her Peds is from) and they did a breathing treatment that just did not work. They advised we go via ambulance to Cottage. Freak out moment for a bit. It was the sickest she had been. I opted to take her instead (cost and being stranded). We got to Cottage where they did breathing treatments and more testing. The treatments worked for a bit. Lily would have moments of normalcy and then moments of being really out of sorts. After several doctors, fighting with a lame know it all nurse, we finally got a doctor and nurse I loved!!! They were trying to send us home. I was not going home again. Nope, mama bear came out and I was hell bent on getting her better. They were comfortable with her having breathing problems, since they assumed she had it before because of her arthritis. Well, the great nurse really pushed for an admission regardless of the overcrowding. Lily was near the end of the RSV, but it was the worst it had been. We were finally brought up into the room where Lily spent the next 2 1/2 days hooked up to fluids and oxygen. She bounced back a tad and we finally went home after the New Year. What a way to ring in 2011 right? I prayed that it was not a sign of things to come!!!!! January and February went by pretty normal, good days and bad days. Lily has had more joints affected but she pushes through it. We had our normal routine of therapies and doctor visits. She thankfully didn't get many of the colds going around. Our friends came down and Lily loved playing with them. On February 25th, I had surgery on my elbow. I was in a lot of pain and pretty souped up on Vicodin. My mom was Lily's caregiver. On the 27th, I know that she didn't feel good. After being downstairs for a little bit, my mom calls me to come down. I get my dizzy self downstairs to find Lily stiff and the worst I had seen her. DAMN ARTHRITIS was hurting my baby.

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:)

Much love,

Stephanie

From mama....

So, things have been crazy yet ok for Lily. I have been fighting with the "lovely" school system to get Lily into speech therapy and preschool part time. The outcome is horrible. Since Lily's primary language is English, she does not have priority for speech therapy. Priority is given to those whose native language is not English. Let's skip how I feel on that.... Regardless, ESL is way different than speech therapy. If Lily does not get speech, we may loose what we have. And, when her ears get a little bit inflammed from being sick, we loose and take several steps back from where she was.

We have been out of physical therapy for over a month....let's not go there either. Ventura CCS has been horrific to work with so far. I am hoping that we are able to start soon. It seems like moving was not a good idea for Lily's health...but a great idea to avoid stairs and get some peace and quiet. I have decided to keep all of her doctors/specialists in SB. So much has happened the past 18 months that the idea of changing them is silly. I am lucky that I really like the team of doctors!!!

A few weeks ago, Lily had a horrific reaction to the Methotrexate...it was scary. Given all the meds she is on, her arthritis is not getting better. She is still having several daily flares and is in pain most of the time. She went from being a kid who pushed through the pain to walk, run and play, to one that refuses to walk and screams in pain. We have very few nights that she doesn't wake up screaming in pain several times. ARTHRITIS SUCKS SUCKS SUCKS!!!!

I am working with her rheumatologist and doctors to figure out when a good time is to be hospitalized for monitoring since she isn't doing anything "by the books". She is my kid.

Pray for me. I have had a really hard time the past month or so dealing with it. I have hit brick walls getting her the vital therapies she needs. I can't stand to see her in pain so much. For only being 3, she has suffered the majority of her life. It's not a matter of why or not fair, it's a matter of my baby is constantly in pain and rapidly getting worse.In the past 2 months, she went from being non-stop running to barely walking and crying when she has to. In the past 2 months, Lily has only a few good days of eating because of the side effects of meds. In the past 2 months, Lily's Methrotrexate levels were upped and yet she isn't getting much relief.

However, on a positive note...in the past 2 months, we were SUPER BLESSED by the Arthritis Foundation to experience the amazing Juvenile Arthritis Conference where I learned a ton. In the past 2 months, I have gained a lot of knowledge and somehow not let the crappy circumstances destroy me. In the past 2 months, I have been blessed by friends. In the past 2 months, Lily has starting talking more and more. In the past 2 months, Lily has been on a huge learning curve.

In the next 2 months, we will hopefully be hospitalized to help bring the disease under control to help Lily have a more "normal" childhood. In the next 2 months, we get to do amazing things through the Arthritis Foundation. In the next 2 weeks, we get to help give back to them.