Patient Comments: Kawasaki Disease - Treatments

Question:

What treatment has been effective for your Kawasaki disease? Submit Your Comment

Comment from: Susan, 35-44 Female (Caregiver) Published: April 23

In 2004 I received a right total hip replacement after an accident. When I woke up I did not know where my foot was and my right heel and shin had stocking distribution paresthesia/hyperesthesia which is like millions of red hot needles piercing your skin. I could never walk correctly despite all x-rays showing perfect placement of implant. After being told to wait five years for nerves to regenerate and countless pain medications I asked for nerve conduction tests. They discovered post ganglionic cysts on the tibial and sciatic nerves and a partial sciatic lesion, site unknown. The abductor hallucis muscle under my foot that pads the sole had withered away from lack of blood flow. My leg and life has been slowly grinding to a halt. I tried FES (functional electrical stimulation) to try to help my front foot lift as I had developed drop foot. This made the nerves very painful and I had to stop, and as the years progressed I needed a cane and mobility scooter. In January 2017 I felt a sharp pain in my thigh and could not walk. I attended Accident and Emergency numerous times where an anteroposterior (AP) x-ray was carried out; everything was fine, just my existing nerve damage. My life went on hold. I sleep downstairs, need a mobility scooter to move around, and stopped driving. I visited the doctor begging for second opinion on hip and was sent to wrong consultant foot specialist after nine month wait. Finally in December 2017 my leg gave out on me and I fell again and was taken to hospital. A very good radiographer listened to my story did an AP x-ray and the femoral stem and hip looked fine. He decided to do a lateral x-ray and there it was; the femoral shaft on my hybrid ceramic/stainless steel Exeter implant was broken and had been broken for a while. I had been walking around on that for nearly a year while every medical professional assumed it was existing nerve damage. One week ago I underwent complex right hip revision where I managed to keep the cup but my thigh bone was opened up like a sandwich (consultant’s words), old crumbling cement and shattered stem removed, washed out with antibiotics, and longer femoral stem and polyethylene implant used. The whole thigh bone was wired back together. I am finding it difficult to walk with walker as legs feel different lengths, just need to straighten up and trust new implant. Pain is there but trust me, it is less than the broken stem. It is a different pain as all the tissues in the hip and leg adjust. My recovery will take months and my best case scenario is walk with a cane and have a limp but be pain free.

Comment from: honeycakesmom, 3-6 Female (Caregiver) Published: March 16

My 5 year old daughter has recently been diagnosed with Kawasaki's Disease. She had a first dose of IVIG and went well...for three days....then the fever returned. Immediately, the doctors said we needed a second dose of IVIG and "it can't hurt her," however, of the small percentage that there would be a reaction...she had one. When the antibodies from the IVIG entered her body they began attacking the "bad" stuff causing the Kawasaki's but it also began attacking and destroying her red blood cells. Her hemoglobin count dropped from a 10.4 to a 4. That started a whole new serious situation. She had to have a blood transfusion and remained in the hospital for another week. She is home now, but slowly recovering. The IVIG seemed to somewhat work, but the "reaction" to the second dose is causing a lot of other issues.

Published: April 15

My son was diagnosed with Kawasaki's at 13 months old. He was given the gamma globulin treatment over a 24-hour period. The fever reappeared for a couple of days afterwards, but then subsided. We saw the doctor once per month for a while. Eventually, once he turned 5, we were in the clear. He's now 21 years old and the Kawasaki's was never a factor again. We were very lucky in his case, as it was diagnosed early on immediately after the onset of the fever and strawberry tongue. There is hope.

Comment from: ALMS, 35-44 Female (Caregiver) Published: June 11

My son who is now 2 years old was treated for Kawasaki disease at 8 months. He had every symptom name in this article. He had a disease account of 18 when it’s supposed to be 1. He had to have two doses of the medicine; it got his disease count down to a 3 so the doctors were satisfied with that. He had to do a follow up visit and have his heart checked with the EKG machine and take a half of an aspirin once a day. The aspirin seemed to help. He was clear from the doctor and doesn't have to return until the age of 5 years old. I still worry that it may return, because sometime he feels warm to me. That was an awful experience we had to go through but mostly him. We stayed at the hospital for a total of 6 long days.

Comment from: babean41, 35-44 Female (Patient) Published: December 24

My son was diagnosed with Kawasaki's disease when he was 2 years old. It took them almost 2 weeks to figure out what was causing his fever. Once diagnosed, he was in the hospital for 2 days, and had to get an ultrasound every 3 months and he had to take an aspirin a day for a whole year. He's now 12 and still going strong.

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