Thursday, August 27, 2009

Busy Day

We brought Madeline today after school to have her blood drawn. Right after, we brought her to dance. She did great. She is so brave. Now we are spending the rest of the evening studying. Summer sure was easier.

I will go to medical records tomorrow to get her results. It will be interesting to see what her blood work does once her cyclosporine is decreased. Four days and counting!!!

Tuesday, August 25, 2009

Bloody nose

Madeline had a bloody nose tonight. She told me once I saw the blood that she'd had a few nose bleeds today at school. It's been a long time since she had a nose bleed. She had them mostly when she first started the cyclosporine. I guess it could be sinus problems, but she's not having an symptoms.

I did a media story today on swine flu. The hospital has a lot of flu coming in the ED. Not a good sign since it is only August! On the news tonight, our local private schools have around 120 students out due to the flu. They have a total of 2100 in their schools. Stress!

Only 7 more days of the full dose cyclosporine. The countdown begins.

Saturday, August 22, 2009

Regurgitate

I hate nights like this. Madeline had her Saturday night "big medicine" night. She took all her pills and cyclosporine...and then vomited everything right back up. No matter how often this may happen, I never get use to it. I always worry if we should retake everything, wait until the morning or just not worry about it. We decided to have her retake her meds in the morning.

Poor baby...and she had a friend spending the night. Her little friend's eyes were wide, but she handled it fine. She was actually making light of it for her. Sweet friend.

Wednesday, August 19, 2009

Going strong!

Madeline needs to have her blood work done again. With school in session, kids are already beginning to get sick. I have one friend whose daughter has confirmed swine flu and another today who said her daughter has the flu, but doc did not test for swine. Horrifies me to think what fall will bring!!!

Madeline is still looking, feeling good. It's been a little over a month now, but I need to give her a good check over of her hands, ankles, chest, etc. I've not heard her mention any changes with her skin...which is good. But, I like to confirm that with my own eyes. I guess it makes me feel better. :)

Sunday, August 16, 2009

Sample letter to teachers, school nurse, administration

What a week!!! Homework, dance, football practice, after hour work events and projects. Yes, projects...the first week of school and Madeline was assigned two. Ugh!

I never had time to post the letter I give to teachers at school. But I wanted to in case any parents would like to use any or all of it. Besides speaking to each teacher, I also provide them with this letter. I want to make sure they UNDERSTAND!!!

I found this sample letter off the Cure JM site. I made it my own, but it had many areas I would not had thought to include, but were important.

Here it goes...

August 7, 2009
Dear Fifth Grade Teachers:
I wanted this letter to serve as a follow-up to our conversation regarding our daughter, Madeline Ducote. Madeline is currently battling a very rare disease called Juvenile Dermatomyositis, or as she calls it JDM. She was diagnosed on March 28, 2008 at 9 years of age.
JDM is a rare autoimmune disease which attacks children of all ages, causing them to suffer from weakened and painful muscles, skin rash that worsens with sun exposure, severe fatigue, digestive problems and a variety of other debilitating symptoms. This disease is very rare as it only affects between 3,000 to 5,000 children currently in the United States. As to date, we have only found one other person in the state of Louisiana battling this illness. Some children may experience a remission, while others will battle JDM their entire life. Madeline is now 16 months into treatment, and she has yet to reach remission.
In Madeline’s case, she is doing much better than she was a year ago. Madeline’s treatment currently involves taking Cyclosporine A (a medication normally used for transplant patients) and methotraxate ( a chemotherapy drug). Combined with her medicine, it is absolutely necessary to keep her protected from the sun. JDM is peculiar in that although Madeline may look good now, having her in the sun unprotected can cause big problems. This is due to her disease, as well as the side effects of her medication.
My husband, Rick, and I request the following guidelines be followed concerning Madeline’s activities while attending class at J.I. Barron Elementary:
  1. Madeline is very sensitive to the sun as a result of her dermatomyositis/medications. As a general rule, it is important that she avoid unprotected sun exposure during the times of the day when the sun is at its peak (10:00AM – 4:00 PM). We are aware that Madeline can tolerate minimum sun exposure in the late fall and winter months with proper protection. It is imperative that Madeline wears sunscreen at all times. If I feel Madeline should not be outside due to a flare or extremely high Ultra-Violet Index (UV Index) I will advise you and the school via a note whether Madeline is or is not permitted to participate in outdoor recess. In the past, she would have a friend stay indoors with her when she could not go out for recess. This really helped Madeline a lot, mentally and emotionally. She’d also go to the art class with Ms. Noel and help her. She enjoys this very much too.
  2. Madeline will need to put on sunscreen before recess, and any time before she goes outdoors. Please allow her to go to the bathroom or hallway so she may apply the sun block in privacy. It is necessary to have her sunscreen applied to her face and all exposed areas. Madeline should re-apply sunscreen to her hands prior to dismissal. I will supply the sunscreen for her to keep in her backpack or your location of choice.
  3. Madeline may participate in gym class; in fact exercise is very important for maintaining her muscle strength. My understanding is that from time to time gym class is conducted outdoors. In general, Madeline is permitted to participate in outdoor gym class, but must apply sunscreen prior to going outdoors. I will notify you (see #1) on those days when Madeline is NOT permitted outside for gym class.
  4. Madeline is taking methotrexate, which is an immunosuppressant medication that puts her at increased risk of infection. It is important that I am notified if there are serious infections in the school (i.e. staph, mononucleosis, flu, etc.). Also, she will need to wash her hands and desk more often and will carry hand sanitizer with her at all times. I will also purchase hand sanitizer for your classrooms if that will help you. I can not stress enough the importance of this. What can be a simple cold for you or me, can become serious for Madeline.
  5. Madeline must visit various physicians throughout the school year which are located in Texas at Texas Children’s Hospital. She may tend to be ill more often. These events will require that she is absent, late or dismissed early. I will keep in touch with you when these events occur in order to coordinate her schoolwork.
Juvenile Dermatomyositis can be a physical illness but does not impact Madeline’s ability to think, feel and participate. You will find that Madeline is like any other child her age in all other respects. She is competitive, somewhat of an over-achiever, a dreamer and a very well-rounded little girl. I am very interested in her mental health as it relates to her disease and ask that you inform me should you detect any concerns in her emotional well being. I value your expertise and welcome your assistance should a concern arise.
One way you can learn more about Madeline’s experiences with this very rare disease is by visiting her blog at www.madelinesjdmstory.blogspot.com. She loves to tell you about her pen pals literally from around the world, in which, she has made from this site. Plus, it will help give you an idea of the path we have taken in these past 16 months.
Thank you so much for taking the time to attend to this matter. I look forward to the new school year, as does Madeline, and developing a new partnership with each of you.
Sincerely,

Monday, August 10, 2009

First Day of School


Today was the first day of school. This is a picture of Madeline and her big brother Trey. Madeline is now a 5th grader and Trey is an 8th grader.

First day was great. Now only around 160 more to go.

Friday, August 7, 2009

Open House

I can't believe we start school Monday. It's just plain too hot to go back to school.

We had open house today. Did the routine hello new teacher, this is Madeline, she's excited about school and by the way she has a disease...and you know the rest of the story. I do give each teacher a letter regarding Madeline's disease and restrictions (which I will post a copy of the letter Monday) and a bottle of hand sanitizer. I am a big advocate on supplying the classrooms with hand sanitizer. Anything I can do to keep the germs away.

Madeline is now officially a 5th grader. Her brother is now an 8th grader. I do hope they have a great school year. They are wonderful kids. I know they will make Rick and I very proud. Just like they do each year.

Wednesday, August 5, 2009

In less than a month

We are on the countdown for Madeline to have her first try at decreasing her medication. September 1 is the big day. We will decrease, per doc orders, her cyclosporine from 2.5 mg to 1 mg daily. She will continue her weekly treatment of methotraxate at the same dose level.

How do I feel about this? Horrified.

I find it very interesting that my fear, when Madeline was first diagnosed, were the medications and their side effects. Now, after I see how much the meds have helped her, I am now having the fear of what will happen when her meds are decreased. We've come so far. I just don't want to see her experience a setback.

I'm staying positive for her, of course. I'm making sure she understands this is the step towards remission and not having to take medications forever. She's glad to hear that. She just wishes it was the methotraxate going away.

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.