Wednesday, April 30, 2008

April 30

Madeline is red all over - her face, arms, legs, etc. She does not feel well at all. In fact, came home from school and slept - which she never does. We are still not taking meds to see if she is allergic, but I am leaning towards the secondary illness with her symptoms.

Her poor little hands hurt her. She told me this morning while getting ready for school - "Momma, how am I going to hold a pencil today? I have so many blisters". Breaks my heart.

Tuesday, April 29, 2008

April 29

We called Dr. W in Texas today but he is out of the country, so another doctor on call spoke w/ our pediatrician. Dr. X (since I don't know his name) thought Madeline may be having an allergic reaction to the cyclosporine - GREAT! So we will take her off the meds to see if her hand blisters improve.

This is so hard - we are horrified to start "poisoning" our baby with these drugs, now we have to stop taking them. I can't help but wonder if this will make her disease progressive quicker? Will she have a reaction? Etc.???

I am so confused.

Monday, April 28, 2008

April 28

Madeline was in a good mood today. I feel like I am obsessed with her mood, but really it because she is normally such a confident, go with the flow, laid back little girl. And now she is not. She gets so angry, cries so easily, screams, tenses her entire body. It's hard for me to get on to her knowing what is going on with her, but in the same sense her behavior is unacceptable.

Her face is staying really red lately. Dr. W said it would take up to 12 weeks for the meds to begin working. It's going to be a long three months.

Sunday, April 27, 2008

April 27

Good Sunday at home. We all got a lot of rest. I think Madeline really needed the rest. Hands still have blisters in palms.

Saturday, April 26, 2008

April 26

Madeline's hands (blisters) look the same. Her mood is okay.

Her hands worry me - my gut says something is not right.

Thursday, April 24, 2008

April 24

Madeline seemed somewhat better today. She did go to dance, which is every Thursday and lasts for three hours. She complained somewhat, but still went. We are so proud of Madeline regarding her talent and love for dance. She truly has a gift. She dances on a competition team. She currently takes ballet, jazz and tap.

Her hands still look bad. I called Dr. W in Texas. I told him about the blisters. I also asked it the grottrons papules can go into the palms of her hands - he said no. He was not sure if she picked up something secondary or if she was having an allergic reaction.

This is what I don't like - not having a doctor in town, quickly accessible. I will have to see if Dr. W has an email address so I can email him pics if necessary.

April 25

Madeline tried out for cheerleader today - go Madeline! She served on the squad last year, but she was last minute on deciding if she really wanted to do it again. I think she thought it was going to be more than it was (which was fine by me). She told me she may want to concentrate more on her dance - too funny.

Her mood was better; her hands only slightly better.

Wednesday, April 23, 2008

April 23

Just what I feared - another terrible day. She is just so tired. I also wonder if she is getting sick or having a reaction to her medication. I know she is on immunosuppressive medication, but could she already be having reactions/problems?

One thing that is new are these blisters inside the palms of her hands. She's never had these before. Is this normal? If they are not better tomorrow I will call her doctor.

Here we go..worry, worry, worry.

Tuesday, April 22, 2008

April 22

The mornings are not fun at all. Madeline is having to be dragged out of bed with old 15 minutes until we have to leave. She is so tired and so grumpy. She is having fits to stay home (which she has never done for she loves school). Her face did look somewhat better, but the moment she has her temper tantrums, she is flushed again.

It is her metho night tonight. I hope Wednesday is not as bad as last week.

Monday, April 21, 2008

Week Two - April 21

Madeline had a terrible day a school today. A lot of her classmates are picking at her. She is also ultra sensitive and has her feelings hurt terribly. At first, she was excited to let everyone know the doctor knows what her rash is. She was telling her friends, but being how kids are, they picked on her.

Her face is really bad today. Her chest rash is bad too. My poor baby.

Sunday, April 20, 2008

April 20

Good day today. She played with her friends. She seems to want to stay inside more. The heat seems to bother her.

Saturday, April 19, 2008

April 19

We had a good day today. Trying to keep things normal. The sunblock ordeal is not fun. I'm obsessed with buying every possible kind in hopes of finding one we all like. I also found a good website on the disease - curejm.com. Still hard to believe this is us - we are someone with this disease.

Friday, April 18, 2008

April 18

Better today, in fact a good day. We took our cyclosporine, of course. Maybe she is adjusting to the drug.

Thursday, April 17, 2008

April 17

Her attitude is better today. We are still taking daily the 1 1/2 ml of cyclsporine A. She is still very tired. Poor baby.

Wednesday, April 16, 2008

April 16

She is very grumpy and tired today. I almost do not know who she is. This is not the Madeline I know. I am scared for her. My heart breaks seeing her this way.

Tuesday, April 15, 2008

Now the methotraxate

Okay, day two and now it is time to add the methotraxate (10 mg one time a week). I know this is a small dose of this drug, but I hate she is taking this medicine. My dad had a bad side effect from this drug, but the doctor did explain to us that children handle big medications so much better than adults. I just have to trust.

She took both medications. Her face looks really bad. She complained for the first time that it hurt her.

First day of meds - April 14

We decided to give Madeline her medicine at night. We choose 9:45 p.m. for some odd reason. We've had a lot of late nights due to Trey's baseball games and I guess that is why. She is a night owl, so it should not be a problem.

We only took the cyclosporine tonight. We put it in milk as recommended. Her rash is really getting a lot worse lately. I don't know if the disease is progressing or if it is from the heat (summer is just around the corner).

She was actually excited to take her meds and did a good job at it. I was horrified of side effects so had her sleep in our room, which she loved. I don't think we slept too much - she did fine though.

Friday, April 11, 2008

We didn't have to tell her/medications


One gift Dr. W did for us was telling Madeline that she had a disease. Amazingly, she handled better than any of us. She told him, "well I am so glad you know what this is, I was tired of going to doctors".

I only wish Rick and I could have her mannerism. Maybe we will learn a thing or two from her.

Rick went to the pharmacy to fill her meds today. They do not keep the liquid for of cyclosporine A around (again, rare). Luckily, our neighbor was the pharmacist on duty so Rick explained to him what is going on. He said he'd order us a three month supply. We will not have the drugs until next week.
I thought I'd add a picture of Madeline at her 9th birthday party (with Lulu). This is when I started thinking something is not right. Her birthday is in January. It was around 70 degrees on this day, but not near as hot as she looked. Her face stayed this red for around three to four days after her birthday. It calmed down, but never completely went away. At this point, it did not hurt her.

Thursday, April 10, 2008

Appointment Day

Well, we did it. We drove to Beaumont and it took forever. The highway and interstate had construction going on the entire time. We got stuck in traffic for an hour and a half, but I didn't seem to mind due to my nerves and anxiousness of the appointment.

It took us a while to find the hospital, but once we did it was very nice and easily accessible. We didn't have to wait long to see the doctor. He did confirm our fear - she does have juvenile dermatomyositis. He spent an hour in a half w/ us, which was impressive. He reviewed her bloodwork which was done in March ( she had a positive ANA 1:360, speckled pattern; CPK was normal). He also reviewed the pathology report of her biopsy which confirmed dermatomyositis. We actually had two pathologist review the biopsy.

He studied her hands, knees, face, elbows and muscle strength. She is very strong -thank God. We liked him, better yet, Madeline liked him. She thought he was funny. He wore a bow tie and is very tall.

We left there shocked w/ ourselves - he is the right doctor. I hope we are not jumping to conclusions too quickly, but Rick and I both feel he is right for us.

We will start w/ big medications which scare me - cyclopsporine (used for transplant patients) and methotraxate (a form of chemotherapy). I can't believe that is going into my baby's body.

We did find out that he diagnosed her w/ Amyopathic JDM - meaning only skin involvement. If anything that was good news.

But still I wonder - why her?

It was a long, hard day - but we did it.

Wednesday, April 9, 2008

Madeline's first day to miss school

We go to Texas for the appointment tomorrow. We are lucky that we do not have to go all the way to Houston for this doctor has a speciality clinic in Beaumont. I hope he is not a quack and we waste our time. We've decided that we will see as many docs as we need until we find the right one for us. No matter how much money or time -it's the most important thing - for us to take care of her.

I dread tomorrow. It will be a long day. Plus, it's Madeline's first day to miss school since Kindergarten. She doesn't seem too upset about it, thank goodness. But she will miss out on getting her reward at the end of the year. Oh well.

Monday, April 7, 2008

Until the doctor appointment

We have an appointment to see Dr. W in Texas on April 10. I am still in shock that our daughter has to see a rheumatologist and we have to travel to Texas to see one. This has been the hardest event in our lives. Rick and I keep hoping it is one of us and not her.

We are having a hard time talking to people about Madeline. One reason is because we have not told her. And the reason we have not told her is because it is NOT confirmed by a specialist familiar w/ this disease - which we are learning is ridiculously rare. We have told Madeline that we have to see another doctor about her rash. She said, "well I hope this one knows what it is".

We dread telling her this news, if it is real. We can't, just can't.

Wednesday, April 2, 2008

April - What do we tell our baby?

How do you tell a perfectly healthy, beautiful little girl she is sick. I had no idea how hard that would be. It felt as if we were lying to her by telling her we have to go to another doctor about her rash. Deep down I think she knew more was going on. Neither one of us wanted to acknowledge it maybe. Rick and I discussed and discussed how to handle this, but nothing came to us. It was even hard to tell family and friends for it seemed every time we spoke about it - it again made it real. I wanted it to go away.

I don't know if we did the right thing, but it was what we had to do - protect our baby. And honestly, all we did know is that we were going to another doctor to find out about her rash. Madeline's dad and I were still a little hopeful this nightmare would be just that - a nightmare, an incorrect diagnosis, a fluke.

Tuesday, April 1, 2008

Finding a pediatric rheumatologist

Where do you find a pediatric rheumatologist? I work in healthcare and when the physicians you work with tell you they think there is one, maybe two in New Orleans - I knew we were in trouble. The first three to four days after our appt., w/ Dr. B the dermatologist, were tough - A lot of fear, crying, praying (really begging). We went online, spoke w/ our pediatrician, checked with insurances and discovered there are only a handful of these specialist in the south. My father who has RA spoke w/ his physician and he recommended a doctor at Texas Children's Hospital in Houston.

This was one of the hardest calls I've ever made. I took a day off of work and sat in my living room researching the Internet to find the best care possible. I kept thinking maybe I'll find another doctor, or another. Should we go to Mayo? Chicago? NOLA? I finally realized I had to make the call, I had to make the appointment. Once I finally did, the poor receptionist couldn't even understand what I was saying for I was crying so hard. It made it real when I had to make the appointment and I didn't want it to be real.

We were able to get an appointment in a week in a half. Amazing - another blessing.

New Years Eve 2007

New Years Eve 2007
Her rash on New Year Eve 2007. We were treating at this time as poison ivy.

Madeline, January 2008

Madeline, January 2008
Here is a picture of Madeline (2008) at her classroom birthday party. Here you will notice her malar rash and grottron's papules on her hands. Of course at this time we had no idea what was going on.

Madeline, January 2009

Madeline, January 2009
Here is a picture of Madeline at her 9th birthday party. The only redness you see now is the nornal redness from running around at your birthday party. My, what a difference a year makes.