Cayson Costello, 2 year old son to Pat and Kelsey (Ross) Costello, has a unique situation and his diagnosis has been extremely difficult. His blood work and symptoms have not been 100% consistent with any one form of virus or disease.
At this time, doctors believe he has Systemic Juvenile Idiopathic Arthritis or SJIA, also commonly referred to as Rheumatoid Arthritis. SJIA is an auto-inflammatory disease that presented itself in Cayson through swelling in his knees. Auto-inflammatory is a condition in which white blood cells attack the body without the presence of an antibody. In Cayson's case it's creating build-up around his knees which is very painful for him and makes it difficult for him to walk at times. Steroid shots to his knees where administered and while these are supposed to be effective for several months, Cayson's were only effective for 13 days.
Cayson has now begun daily shots to suppress his immune system so that his body will quit fighting itself and hopefully reduce the inflammation throughout his body and help alleviate the pain in his knees. This also means that he will be more prone to sickness and illness.
SJIA is different than typical arthritis in that it can also effect his organs. His CT scan showed enlargement in many of his lymph nodes, so it was critical to start treatment immediately in order to reduce the risk of the inflammation to his organs. He is also undergoing regular blood work to check inflammation levels to ensure that the medication is not impacting his liver as well as genetic testing to help doctors identify any other cause for the swelling such as Periodic Fever Syndrome.
The doctors are anticipating a minimum of two years of shots if the drugs work. If this doesn't work, most likely Cayson will start bi-weekly infusions that will have to be done at Children's Mercy Hospital.
The drugs are nasty and can have some pretty scary side affects so please continue to keep Cayson in your prayers.
The journey for Pat, Kelsey and Cayson hasn't been an easy one and the next few months will certainly be challenging for them. They thank everyone for their prayers, love and support. Please consider helping them by making a donation towards Cayson's medical fund. Any amount large or small helps.
Please consider donating today. Any monetary funds that are over Cayson's expenses will be donated to Juvenile Idiopathic Arthritis research as they have learned first hand how difficult receiving treatment can be. Many of the medications are not FDA approved due to lack of research, which means that insurance does not cover many of the expenses.
Also, please consider signing this petition to urge the Social Security Administration to add Rheumatoid Arthritis to its Compassionate Allowance List.
Pat, Kelsey and Cayson Costello's Family
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