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Archive for November, 2009

Tina Alexander approached me earlier this week to ask if we would allow Luke to be featured this month on the P.E.A.C.E. website. How exciting! 😀

Writing the whole story was hard. I’ve already written – the long story – once and that pretty much sucked the life out of me. I tried to tell the story without getting too dramatic and emotional though I did a little Im sure. Heck! I’m a chick! What can I say?

Anyways… mosey on over to P.E.A.C.E.’s site and read the little special piece (<– click) I wrote on Luke. And, check out the photos Nick chose too.

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New Story Link Here

*Oct 29 - 00:05*

“School nurses mistakenly gave the swine flu vaccine to two students who didn’t sign up for it – including a Brooklyn girl with epilepsy who wound up in the hospital.

“I was outraged,” Naomi Troy, 26, told the Daily News after her 6-year-old daughter, Nikiyah Torres-Pierre, had a possible allergic reaction to the shot.

Officials at Public School 335 in Crown Heights called an ambulance to take Nikiyah to SUNY Downstate Medical Center when she fell ill following the arm jab.

“My stomach was hurting, and I was itching,” Nikiyah said after she was released from the hospital.

The snafu and a similar mixup at a Staten Island school came in the first days of the city’s in-school H1N1 vaccination program.

City officials have stressed the vaccine is safe and urged parents to sign up for it – though less than half have sent in permission slips.

Troy was waiting for advice from her family doctor on whether Nikiyah should get the shot since she takes medicine to control her epilepsy.

When the nurse called for a student Thursday morning, Nikiyah’s teacher misunderstood and sent the wrong student, Troy said.

The error was compounded when the nurse didn’t check Nikiyah’s name before sticking her in the shoulder, the mother said.

“The school made a horrible mistake,” she added. “They never asked for her name. They have no paperwork….How do you make a mistake like this?”

After the mistake was discovered, officials summoned Troy to the school, she said.

Troy said the nurse – a Department of Health employee – tried to get her to sign a consent form, after the fact.

“I was insulted. I was really angry. ‘You just incriminated yourself even more,'” Troy recalled thinking.

“If they’d taken proper precautions in the school this never would have happened.”

A student at PS 65 in Staten Island also received the vaccine without parental permission on Wednesday, but officials gave no further details.

Officials for the nurses union declined to comment. The Health Department said the incidents were under investigation.

“The Health Department does not expect any future adverse medical effects for these children, but we are working to determine how this misstep occurred,” said spokeswoman Jessica Scaperotti.

“We will develop additional safeguards to prevent similar instances in the future.”

She added that the vaccine is safe for kids suffering from epilepsy.

Roughly 1,800 students have received the vaccine in the first phase of the school blitz.”

Luke had his first set of shots at 6 wks old. 2 days later he began having seizures. Ironic? Medical professionals say it’s unrelated. Luke got a seasonal flu shot this year and 2 days later began having seizures. Hmm, now it got the doctors to thinking….

The neurologist told us not to vaccinate for H1N1 and to continue to hold off on any other vaccinations as well until we have establish FIRM seizure control.

 

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Halloween 2009

Just to break up the monotony of epilepsy awareness month I felt we need to see some cute Luke fluff.

Our whole Halloween weekend was spent with a sick Luke. He had a fever virus and felt pretty crummy for most the the week. We didnt get to go to Boo at the Zoo because it was rainy. So, at least we didn’t miss much there. Saturday we missed the last swim class which was terribly sad since Luke is not only Luke man, but he’s a little Luke fish too.. Then, we missed his little cousin Lyrics first birthday. And we SO wanted to make it to Saline-o-ween to ride the ponies and play games but that was out the window too. And forget any Trick-or-Treating!

However, we did manage to stuff him in his baseball player costume and get some photos. It was like pulling teeth. He was MISERABLE!

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He couldnt sit still..

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Checking out some dirt .. Who knows why.

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So as long as you cant see his face you dont know hes crying, right?

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His jersey says ‘PUPS’ not ‘UPS’ like Nick thought..

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Upset he couldnt open the gate.. poor baby

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Then he got upset over something else! Its hard being a sick baby..

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Dada cheered up Luke Man by climbing up the hill with him!!

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Go, DADA! Gooooo, LUKIE!

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C’mon mama!

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Mama! C’mon NOW!

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Don’t make me go inside!

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He just couldnt take one more minute! 5 minutes was too much!

Later that night, Nick and Luke passed out candy on the front porch for a while. Then Luke joined me inside as it got darker. Really, next year we should buy 10 bags of candy. 2 bags runs out far too fast in our child-infested neighborhood. :D:D

Maybe once he feels better we can get some good photos of him in his costume and some fall photos.

Gee, pretty soon we will have to take Christmas card photos… man this is coming up far too fast!

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  • Since seizures are so prevalent, knowing proper first aid is paramount.

Proper Seizure First Aid…

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Stay calm, be reassuring and don’t hold the person having a seizure down.

  • Protect the person from injury by removing nearby harmful objects.
  • Put a cushion, pillow or soft item under their head to prevent head injury.
  • Loosen tight neckwear (tie, scarf).
  • DO NOT PUT ANYTHING IN THEIR MOUTH.
  • Place them in the recovery position (on their side) as soon as the seizure has ended.
  • Look for a bracelet ID or an identity card.
  • Stay with the person until the seizure is over and they have recovered.
  • Call 911 and get medical assistance if:
    • The seizure lasts more than 5 minutes.
    • They do not have an ID stating that they have epilepsy.
    • They are not waking up after the seizure or are having difficulty breathing.
    • They are pregnant.
    • They have injured themselves due to the seizure

     

    Luke has rescue medicine that we are instructed to administer if a seizure lasts longer than 3 minutes. We have a 5mg ‘pen’ of Diastat. For us we follow the above guidelines and we begin immediately timing the seizure because we’re time nazi’s and want to administer Diastat as soon as possible if he goes past three minutes. However, since we’ve gotten this Rx we’ve never had to use it, thank the Lord.

     

    We turn Luke on his side in the recovery position as he is seizing (vs after which is what is recommended above) because he seems to produce a lot of saliva that he potentially choke on. Usually, one of us holds him on his side gently in our arms. He’s still tiny enough to do that.

     

    We always talk to Luke through the seizure to reassure him we’re there, love him, and will help him. I have no idea if he can understand that. Probably not, but it makes me feel better. It forces me to remain calm which is so hard for a mama to do while he baby lies there helpless.

     

    We always call each other if we’re not together when Luke has a seizure. Usually Nick calls ACH neuro on call to find out what we should do. They normally have us alter his meds until we can be seen.

     

    Ultimately, the best thing would be for no one to ever have a seizure. Unfortunately, that’s not the case. Millions of people around the world suffer from all kinds of seizures. So, if you happen you be witness to person having a seizure please remember these simple first aid guidelines

     

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“Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide. ”

“Historically, epilepsy research has been under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.”

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-CLICK photo above to view larger-

 

(http://cureepilepsy.org/about/epilepsy_facts.asp)

Why is epilepsy not talked about?

“Historically, epilepsy has been neglected, feared, and misunderstood. A veil of secrecy surrounding the disease has resulted in myths, superstitions, and a general lack of knowledge. This has impeded scientific progress toward finding answers to one of the oldest-known and most prevalent neurological diseases, leaving treatment and research efforts in the dark ages.”

(http://cureepilepsy.org/about/what_is_epilepsy.asp)

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I have decided to dedicate this month to helping raise awareness about Epilepsy to my friends and family and anyone else I can reach this month. Epilepsy is more prevalent than people realize.

– 300,000 people have a first convulsion each year.

– 120,000 of them are under the age of 18.

– Between 75,000 and 100,000 of them are children under the age of 5 who have experienced a febrile (fever-caused) seizure.

Also,

– Epilepsy and seizures affect almost 3 million Americans of all ages, at an estimated annual cost of $15.5 billion in direct and indirect costs.

– Approximately 200,000 new cases of seizures and epilepsy occur each year.

– Ten percent of the American population will experience a seizure in their lifetime.

– Three percent will develop epilepsy by age 75.

http://www.epilepsyfoundation.org/about/statistics.cfm

Luke’s seizure disorder has given our family a purpose.. we desperately, along with many many other families just like ours, want to see a cure for epilepsy someday. The more we can raise awareness the more funding can be aimed at researching the cure.

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Let’s fight this so “that not another moment is lost to seizures”

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