My Personal Experience: Finding The Best Medical Treatment For Your Child

 

My Personal Experience:  Finding The Best Medical Treatment For Your Child

 

I remember like it was yesterday. I remember it very well. My eight year old daughter Bree woke up screaming in pain. Not only screaming in pain but sobbing. In between sobs, all I heard was, “make it stop mommy, make it stop”! As a parent, there is nothing worse than seeing your child in pain….and feeling so helpless.

For the third day in a row, my daughter woke up with swollen hands and feet. When I say swollen, I mean SWOLLEN. There were no fine lines visible in her poor hands which appeared twice their normal size. According to my daughter’s pediatrician, Bree was suffering from the hand/foot/mouth virus. Dr. G stated that Bree would start to feel better after a week or so, that her symptoms would lessen as the days went by. By day three, I knew something was not right about this so called virus.  Bree’s symptoms were not lessening. She now complained of constant aches and pains in her body and “bad, bad headaches Mommy”.  My motherly intinct or gut or intuition told me that this was no virus. This nasty collection of symptoms was “something else”. I didn’t what that something else was but I knew it had to be more than a virus.

The next day, I carried my daughter into Dr. G’s office {my daughter was  unable to walk due to the pain in her feet}. Dr. G indicated that I was over reacting to a “common virus” so I kindly indicated that I was not leaving her office until blood was drawn and tested for EVERYTHING. Yes, I said everything. I was so overwhelmed by my daughter’s pain and the doctor’s dismissive attitude that I wanted a test for everything.

Two days later, I receive a phone call from Dr. G. My daughter’s blood tests reveal that she has systemic lupus erythematosus , juvenile rheumatoid arthritis, and kidney failure. Oh. My. God. The next few days/weeks/months were a blur of doctor and hospital visits, blood tests, MRI scans, and chemotherapy sessions. By the time my daughter was diagnosed with her conditions, she was in stage 4 of kidney failure {there are only 5 stages and stage 5 means complete and total kidney failure that requires a transplant}. The swelling of Bree’s hands and feet were due to auto-immune responses from the lupus and rheumatoid arthritis.

Fast forward to today, twelve years later. My daughter’s lupus is in remission and the chemotherapy saved her kidneys. Bree continues to take an oral chemotherapy drug in an effort to prevent auto-immune activity in her body but she is alive and healthy and happy and amazing. Praise God and the amazing doctors that treated her!

So what did my experience teach me about children and medical treatment? Quite a bit actually.

  • Moms and Dads–>trust your parental instinct. If you think something is medically wrong with your child and your child’s physician is dismissive of your concerns, find another doctor. Get a second, third, or fourth opinion.
  • Look for doctors that specialize in pediatrics. When Bree needed to see a rheumatologist, I searched for a pediatric rheumatologist. When she needed to see a nephrologist, I found a pediatric nephrologist.
  • Look for a physician that is board certified in his/her specialty and is affiliated with a children’s hospital.
  • Be prepared to travel. A visit to my daughter’s specialists required a four hour drive {round-trip}.  As a parent, I did whatever I had to to ensure that my daughter received the best medical care possible.
  • Overwhelmed? Ask for help. Most children’s hospitals have supportive services for the child’s family.
  • Ask lots of questions and take notes. Keep communication open between you and your child’s doctor, nurse, assistant, etc.,

When Bree was sick twelve years ago, children’s treatment centers/hospitals were very limited in our state {there were only two}. Thankfully, this is improving especially since the demand for specialized care continues to increase. Hospital for Special Surgery {HSS} is an example of specialized care. HSS is a world leader in the fields of orthopedics, rheumatology and rehabilitation. Located in New York City, HSS recently opened the CA Technologies Rehabilitation Center at the Children’s Pavilion providing comprehensive, individualized rehabilitation for both inpatients and outpatients from birth to 21 years.  Its multidisciplinary staff includes physical therapists, occupational therapists, and speech-language pathologists.

Finding The Best Medical Treatment

 

HSS is ranked #1 in Orthopedics and #3 in Rheumatology in the country by U.S.News & World Report’s 2012-13 “America’s Best Hospitals” issue. This is exactly the type of endorsement I look for when researching treatment centers.

You can find the Hospital for Special Surgery on Facebook. While there, be sure to read the “Why Choose HSS” section. Finally, don’t give up parents. It’s okay to want the best for your children. I truly believe that my daughter is alive today because I fought for her to receive the best and that is never wrong where children’s lives are concerned.

Disclosure:  All opinions expressed are mine and mine only. I wrote this post while participating in a blog tour by Mom Central Consulting on behalf of Hospital for Special Surgery. A small donation to a charity of my choice was made in my name as a thank you for participating. You should consult with your physician or other health care provider before beginning any rehabilitation/therapy, sports training, or exercise program.

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