Our discovery with Juvenile Rheumatoid Arthritis

Archive for October, 2010

Sensitivity to Light

So this past week Catherine has developed more headaches and a sensitivity to bright lights in the stores, school and outside. My mom went with me to the commissary to get groceries, and I had to go get a second shopping cart to let Catherine get in because she was getting sick in the store because of the bright lights. When I went to the pharmacy today to see if the recall affected her methotrexate, I asked him about the side effects and he said that yes it was a side affect…I just don’t know what to do, we put off her injection until this evening because of the observance of Halloween last night. I tell you we are having a hard time.

Spider Queen and Alice, were the two costumes this year

Anxiously waiting

Anxiously waiting a phone call from the Chapel Hill Hospital about the MRI….what a long wait..

Orthopedic Visit

So yesterday the Orthopedic Surgeon said Cat’s knee looked the best he has ever seen, and although she can’t get it straight yet he thinks that maybe in 4 months it will have gotten better, so we go back in 4 months

She actually slept great

She slept in till 7am and her stomach wasn’t upset! That was a great night! Yeah

14th Injection and the Nasuea started before

Today marked her 14th injection, each one a milestone, maybe one step close to remission. I haven’t heard anything from the nurse to let me know if she has it in her jaw…I am on pins and needles…Monday can’t get here fast enough for me to call the nurse.

Well each time it just gets harder and harder for Cat to take her injection. She gets all nervous about getting the shot, and then she makes herself sick. She got the injection a few minutes ago and she is really feeling sick. I had to eat my words and go get her something to eat really quick because I felt she was going to get sick, since she ate so early tonight. This is going to be a long night, we have the trash can beside us just in case she can’t make it to the bathroom.

MRI and labwork

Today Cat had her MRI of her jaw, and that machine was the loudest I think I have ever heard. They had to to fit the machine for Catherine since she was so little, and then they had to lay her head in between two cameras. She did really good to lay still for an hour. But every time the machine turned on we jumped, it was incredibly loud. Her pediatric specialist seems to think her insomnia is coming from her asthma medication, so I need to contact that doctor. But she is still having pain and stiffness in her knee. Cat didn’t sleep good at all last night, she had a hard time going to sleep then she woke up at 3am and was wide awake until 6, went back to sleep got up at 8, and was just tired all day long. Now we both have sore throats..I don’t know what it could be.

Research and MORE reading

It seems to be one of those diseases that no one knows about, but should. Early diagnosis is the key, but some states don’t even have a Pediatric Rheumatologist. Many Pediatricians don’t know enough about JA to recognize it, so many kids go undiagnosed for a long time, further damaging their joints. White Blood cells that are supposed to fight off infection instead attack the tissues in her joints.

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