Monthly Archives: June 2011

How my son survived Kawasaki Syndrome

This is a repost from my other blog.

SOME rare diseases that hit very young children come with ordinary signs and symptoms which when ignored could cause debilitating lifetime effects.

A few days before my five-year-old son, Khalil, was confined and diagnosed with a rare Kawasaki Syndrome in 2004, he developed a rash on his hands and feet.
I would have dismissed the signs as minor allergy. But the occurrence of abdominal pains, reddish eyes, dark red lips, and strawberry spots on Khalil’s tongue that accompany his swollen fingers made me suspect that he could be suffering from a condition worse than an allergy.

My son was full of energy despite the discomforts brought by these unusual symptoms.

I was nervous when I brought him to the pediatrician’s clinic anticipating the least serious diagnosis from the doctor.

When Dr. Annaliza Duran, a consultant at the FEU Hospital in Quezon City, saw my child she told me right away that something is wrong with the kid as she is familiar with his medical record since he was a baby.

“I don’t like his skin color (referring to Khalil’s pale yellowish skin at the time). I know when he is okay and when he is not,” Dr. Duran told me.

The then 39-year-old lady doctor initially said the symptoms are similar to disease-causing Streptococcus bacteria which are responsible for infections such as strep throat, scarlet fever, and some types of pneumonia.

Khalil’s grayish nailbed also indicate the poor entry of air in his lungs.
She recommended for my son’s confinement to find out what really ails him.

An X-ray made on Khalil at the hospital confirms her earlier diagnosis of pneumonia.

I thought that he would be sent home in a few days. But my worst fear happened on our third day at the hospital.

I received a phone call from Dr. Duran and slowly disclosed to me that aside from pneumonia, Khalil is also suffering from a rare Kawasaki disease.

I was stunned and could not control my tears when I heard what the doctor just said. I initially thought the disease was fatal and feel sorry for my son. I may have heard or read something about Kawasaki disease in the past, but never imagine one of my kids would develop it one day.

Even when doctors gave assurance that Kawasaki is not infectious, I still wonder how my child acquired such an ailment.

Doctors said there is no known cause of Kawasaki, but it could be associated to Streptococcus bacteria.

Streptococcus bacteria are normally found in the human throat, respiratory tract, blood stream, and wounds. It is often airborne in hospitals, schools and other public places.

Dr. Duran and two other doctors, a consultant cardiologist and infectious disease expert also of FEU Hospital corroborated the impression of Kawasaki Disease based on clinical manifestations and laboratory analysis including CBC (complete blood count) and AFC (actual platelet count).

They said that most characteristics of Kawasaki were present on my child including the inflammation or swelling of hands, feet, whites of the eyes, mouth, lips and throat, fever, and swelling of the lymph nodes in the neck.

Khalil’s blood samples showed an increase in the number of white blood cells which normally multiply in the presence of an infection and elevated platelet levels.

He also had an elevated ESR or erythrocyte sedimentation rate. ESR is a measurement of how quickly red blood cells fall to the bottom of a test tube.
When swelling and inflammation are present, the blood’s proteins clump together and become heavier than normal. Thus, when measured, they fall and settle faster at the bottom of the test tube.

Doctors immediately prescribed an aspirin on my child to lessen the inflammation of many tissues that Kawasaki produces.

While the symptoms of Kawasaki run its course and resolve within a few weeks, it becomes a concern because the illness primarily affects the coronary or heart arteries which provide the heart muscle with an oxygen-rich blood supply.

The three doctors attending to my son recommended the immediate transfusion of Intravenous Immunoglobulin (IVIG) within 10 days to decrease the risk of heart and blood vessel complications.

Doctors said 10 to 15 percent of children afflicted with untreated Kawasaki developed heart problem.

“Medication is quite expensive, but we need to immediately transfuse IVIG the soonest possible time to avoid the setting in of possible complications particularly coronary heart disease,” Dr. Duran said.

Khalil needs to be transfused with 25 vials of 2.5 grams of IVIG. A vial costs a whopping P4,000 to P5,000.

On the ninth day (of the ailment), the medicine was transfused on my son for 21 uninterrupted hours.

My family and the doctors were praying that no side effects and rejection would occur during the course of transfusion.

Among the noted side effects of IVIG are fever, chill, and rashes.
We were thankful that Khali1 responded well to the medicine.

After ten long days, my son was finally given a clean bill of health by his doctors and was discharged of the hospital.

However, he needs to be regularly examined particularly by cardiologists to monitor if any heart problem has occurred after the illness.

I realized that no matter how well you keep your child away from dirt there is no guarantee that he is protected from acquiring certain types of diseases like the rare Kawasaki disease.

But with a timely consultation with your doctor, complications of specific ailments (that show ordinary signs and symptoms) could be prevented later on.

My son is turning 12 years old next month. I’m thankful to God that He never let any KS complication such as heart disease to afflict my child.

Tales of two women with cancer

These women are close to my heart, they are my family. And this is their personal battle with the Big C.

An aunt underwent chemotherapy treatment for lymphoma. Her daughter is currently undergoing chemotherapy for breast cancer.

My maternal aunt was was diagnosed with lymphoma in 2006. She underwent chemotherapy treatment, but she has yet to be declared in complete remission.

My aunt (with my daughter) before cancer

The Sign
It’s been months since I last saw Tita Saning, my 64-year-old maternal aunt. Although we’re both living in Quezon City, I rarely visit her in her house since I became busy with family life.

She is frail, but her hair is a lot thicker now unlike when she was undergoing chemotherapy. She used to have a healthy body, not fat, but heavier than her present weight. She barely weighs 100 pounds.

In the middle part of 2006, Tita became sickly and started to lose weight. She gets cough and cold almost every month and my cousins notice a growing lump in her neck. Tita’s family never realized those signs were already warning signals of a serious health condition.

When she was taken to St. Luke’s Medical Center for checkup, the doctor who saw my aunt advised her to undergo biopsy right there and then. Tita said a needle was initially inserted to the lump to remove a tissue sample. It was done without anesthesia so she felt the painful procedure.

After the needle biopsy, doctors have ordered the removal of her lump. The procedure was called open biopsy.

Painful Revelation
Everyone was praying that the disease would not be as serious as cancer. Although the result showed Tita has lymphoma, we were relieved that it was in the initial stage of development and the chance of being cured remain high. My aunt’s family are hopeful that Tita will get well with the proper and immediate medical intervention.

Based on research, Stage I lymphoma means “the disease is present in only one group of lymph nodes, or, more rarely, in a single organ that does not belong to the lymph system”. This means that Tita’s lymphoma can be cured by chemotherapy.

Chemotherapy treatment is the simple administration of drug into the blood that kills that tumor cell.

My aunt tries to hold back her tears as she slowly recalls her experience from day one.

I cried when my daughter told me I have cancer. I couldn’t accept the fact that I will be leaving my grandchildren. Who will take care of them when I’m gone?” she said in the vernacular.

It’s difficult for me physically and emotionally when I know I have to stay in bed after the treatment and no one will cook and take care of my family,” she added.

Sickness doesn’t stop my aunt from looking after her family. She is the same typical caring Tita that I know.

My aunt and cousin Cez

Chemotherapy Treatment
Tita Saning’s treatment started when her biopsy test was completed. She was given Mabthera through slow infusion into a vein or intravenous infusion. Each session lasts for three hours.

She is currently taking a maintenance medicine called B.P. NORM 10mg once daily for her blood pressure, and Vitamin C to boost her immune system.

My aunt completed six sessions of chemotherapy treatment given every three weeks from July to October 2006. And another four sessions every three months for one year. Each chemo treatment costs a whooping P100,000.

They are not financially well-off, in fact, Tita only earns from repacking charcoal and selling processed meat. But her family was able to support her chemo treatment. Thanks to her daughter who happens to be working at St. Luke’s.

Cez shoulders half of the expenses through salary deduction. Also, they were able to secure a guarantee letter from the Philippine Charity Sweepstakes Office (PCSO) pledging the amount of P800,000.

Side Effects
Unlike other chemo patients, my aunt was spared from the “nightmarish” side effects of chemotherapy such as dizzy spells, nausea and vomiting. Besides losing her hair in the course of treatment, she said she only have to deal with her forgetfulness which she pointed to the chemo medicine as the culprit. Other than that she doesn’t feel anything awful after each treatment.

She stays indoors for 10 days while wearing facial mask to protect her from acquiring infections that will weaken her defenses against cancer cells. She also wears bandana to cover her thinning hairline.

She also underwent CT scan after the full cycle of her chemo treatment to see how she has responded to the treatment.

Cancer runs in the family
Ironically, my cousin Cez, who is doing all she can to support her sick mother, is also undergoing chemotherapy for breast cancer. She was diagnosed last year and underwent mastectomy to remove the affected breast. From the initial stage of treatment, my cousin said she has lost her appetite and could only tolerate soft food diet.

Despite what happened to her and her family, I never see a trace of sadness in her eyes. My cousin said she has come to terms with her fate. “I cried it out and leave my fate up to God,” she said.

Early detection and treatment
Tita Saning is thankful that her condition has been detected in its early stage. The doctor attending to both mother and daughter has been very helpful to explain to them all the information that they need to know about their illness.

Meantime, I would like to share some information pertinent to this post. I was able to interview Dr. Gracieux Fernando of the Philippine Society of Medical Oncology in the past and she talked about cancer detection and treatment.

She said majority of cancer patients in the Philippines learn about their condition in later stage of the disease so that treatment becomes costly.

For his part, Dr. Alan Paul Olavere, of the Chemotherapy Unit of the Medical City Hospital, said 50 percent of expenses incurred for cancer treatment go to chemotherapy alone.

Chemotherapy is the simple administration of drug into the blood that kills the tumor cell.

Aside from early detection and diagnosis, Fernando stressed the importance of patient empowerment.

Patients should be taught to become active partners in treatment decision making. This means that patient should talk to his doctor, learn to ask questions. Doctors are presenting the treatment options and let the patients choose what kind treatment that suits his financial capability,” Fernando told the author in a previous interview.

Fernando also urges fellow oncologists to recommend generic medicines to their patients to decrease cost of treatment and explore other options like putting the patients under drug trials.

Be sure that you get your money’s worth as possible. Make sure that the doctor is open to open dialogue because like everyone at the end we are not here to tell you what treatment you need we are here to propose options. It is up to you to select. We really advocate second up to fourth opinion,” he said.

Prevention
The World Health Organization noted that one-third of cancers (all types) are preventable, one-third is curable and one-third depends on palliative care.

The best way to cure cancer is prevention. How do you do it? Have a healthy lifestyle – no carcinogen like tobacco smoke, eat the right food – vegetables and fruits,” said Olavere.

Also, try to have an annual checkup even if you don’t feel anything, you can detect the possibility of cancer.

Learning from their experience, my aunt and cousin, share the same advice for those who suspect they have cancer: “If you suspect something in your body, seek medical help. This way, any abnormality can be detected and treated early.

My aunt ended our interview by leaving a word of advice for those undergoing chemotherapy treatment, “never lose your faith and pray for miracle healing“.