Ella’s story: Two rare diseases and the NICU roller coaster ride

ella  1“Everyone tells you that the NICU is a roller coaster ride. What they don’t tell you is that it’s a customized roller coaster ride just for you. You never know what’s coming at you next,” says Carrie Shea, whose daughter Ella spent her first three months of life in Boston Children’s Hospital NICU.

Today, Ella is a “remarkably normal little girl,” says Carrie. It’s quite a feat for the three-year-old who was born with GACI (generalized arterial calcification of infancy), an extremely rare condition with an 85 percent mortality rate, and diagnosed with PKU (phenylketonuria), a second rare genetic disorder, a few weeks after birth.

But Ella and her parents seem to have a knack for beating the odds.

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Head lice: What parents need to know

Earlier this year, a Springfield toddler suffocated as her family attempted a home treatment for head lice. The case is a tragic reminder that anyone can get lice, no matter your income, the way you clean your home or how many pets you own. But there are recommended ways to treat an infestation.

Are there natural or home remedies that work? There are some who claim that mayonnaise or petroleum jelly can be used to coat the head and smother the lice. This has not been proven effective, and even the most well-behaved of young children will not sit with goop on their heads for the recommended 20 hours while wearing a shower cap.

Added to the questionable effectiveness of natural remedies are some serious issues:

  • There are frequent allergies to natural remedies like tea tree oil.
  • Plastic shower caps used for protecting fancy hair-dos from the shower are dangerous around children. Children should never have plastic bags on their heads.
  • Oils—peppermint oil, pepper oil or the essential oil of your choice—used in home remedies to smother lice are really hard to clean out of hair, couches and bedding.
  • The remedy some adults use for head lice—dying hair—should not be used on children. Your child most likely already uses shampoos and sunblock for sensitive skin. Adult hair dye can cause reactions for children, including broken skin, hair loss, hives, itching and burns.

How do you know your child has lice?

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After cochlear implant surgery, Isabelle celebrates two birthdays in one month

February is a pretty special month for Isabelle. She and her twin sister Jasmine celebrated their seventh birthdays on February 20. But February 4 belongs to Isabelle alone.  “We call it her hearing birthday. It’s one year from the date when her cochlear implants were activated,” says Isabelle’s mother Vicki Labriola.

Isabelle L + Jasmine_crop

 

 

 

Diagnosed with progressive hearing loss shortly after birth, Isabelle was fitted with hearing aids at six weeks of age. But cochlear implants—surgically implanted devices that provide a sense of sound to the profoundly deaf or hard of hearing—were the best option. As her hearing loss progressed, hearing aids could no longer meet her needs. The implanted devices, provided in concert with services from Boston Children’s Cochlear Implant Program, could help Isabelle build language and communication skills.

Vicki and her husband Jason decided to proceed with the surgery in February 2014. They weren’t sure how it would work, because by the time Isabelle was scheduled for surgery, she was completely deaf in her left ear.

How did it work out? “It’s a whole different world from last year. Although Isabelle talked with us, she was very shy with other people. Now, she won’t stop talking. I think that’s because she is so much more confident in her hearing. She really lets people into her world,” says Vicki.

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What should I know about the relationship between social media and suicide?

Michael RichQ: Yesterday one of my daughter’s friends committed suicide. She was a sophomore in college. I am saddened and angry. I went to the girl’s Facebook page and saw that she had 1,194 friends. All of her pictures show her with an impossibly bright smile. Her wall is full of messages sounding like, “I know we have only talked once, but you meant so much to me.”

I wonder if you have any advice or resources about the relationship between social media and depression/suicide. I need to educate myself and talk to my daughters and younger sons. I see a remarkable disconnect between their reality and how they appear on social media. I have always been annoyed by my daughter’s use of the word “friend” for someone she barely speaks with, and I dislike it when my children (and their peers) post pictures  where they are always partying, smiling, laughing, as if there was no other moment to share.

~ Saddened by suicide, USA

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