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An Unacceptable Occurance

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*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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Proper Seizure First Aid

  • 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.

Epilepsy awareness month ribbon

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

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And we have a new skill!!

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He demonstrated it once perfectly.. then I asked him to repeat the task again and he was too excited and got it wrong. Several hours later I asked again and he got it right! When Nick got home he asked Luke to demonstrate it and he did it again!!

What you might ask is this spectacular skill Luke has now? Color recognition!

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Up til now Luke hasn’t been able to differentiate colors when asked so I just continued to name each color as we drew on paper, played with balls, or his color sorting bears. I figured maybe one day it would sink but I never really pushed it on him. It wasn’t like we would sit in his ‘little school room’ only focusing on color naming. I know at therapy they must’ve been working on it too. Between all the therapies Im sure he gets lots of that.

I had *no idea* he could do that. Last night my mother in law gave Luke a set of Mickey keys that have grips at the top in red, green, and blue. I just happened to ask him which the red key was. He pointed at it. I grabbed him up & hugged him tightly and was pretty well flipping out. (Side note: We try REALLY hard not to do this because it typically scares him & then he wont participate. Its just hes never done that before.. I couldnt help but celebrate) Since the blue & green we similar shades in a way I asked which the blue was. He got it right! Again, outrageous celebration ensued. He didnt seem bothered by this. So I asked for the green one and he showed me! Can you imagine that??? I was SO very excited!

Slightly disappointed when he couldn’t repeat it again. I thought either I freaked him out by all the suffocating celebration or it was just a fluke. Those happen a lot.

So, as it turned out I probably just freaked him out & threw him off his game. Dada was very proud, as you can imagine when he came home & Luke promptly pointed out the colors when asked for each one.

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Ahh… it’s so good and refreshing to see progress. New skills are so few and far between that  grand celebrations are required!

Also, he’s becoming very attached to stuff animals such as his fluffy puppy (Thanks Emily R.. he’s still loving on his fluffy puppy you gave him) and his Donald Duck (or rather mine from 20 yrs ago). He’s been giving whatever object of affection is at that time lots of pat-pats and also I’ve seen him sneak his sucker to Elmo. He is quite a good sharing kid to be an only child and who isn’t around a bunch of other kids all the time.

Oh, and I *think* he tried to say dog. It was more of a ‘dawwwh’ as he picked up his fluffy puppy.

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So as you can tell he has a really great day. He was super verbal and apparently while I was gone tonight being really social. He’s also beginning to answer ‘uh-huh’ more appropriately also. Previously, he has used that phrase usually if he just wants something and we name whatever it is he wants. But today, we noticed we can say something like “Luke, do you love mama?” His reply “Uh-huuh!” With a sweet upward inflection. It’s precious. Ill try to get a video of it. Nick noticed that he’s been pointing at things and saying slowly ‘da..da’ as if he were naming something. We know he wants to say mama because hes seen me pull up at KS to pick him up and they told me he said dada. I know that HE knows it was my car.. he jsut cant say mama and everything comes out dada. But, hes trying to say things.

Good day. It’s was a good day.

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That’s how long Luke went with out any seizure activity.

After our vacation in July Dr. Sharp recommends we start the systematic process of weaning Luke off Phenobarbital, much to our dismay. I had taken Luke in earlier in June and he gave us written instructions on how to do the wean and at what week we drop to a certain level and how long to keep that level there. We had many reasons to not do the wean and the doctor said if we wanted to badly enough he could just switch him to Keppra and wean the Phenobarb but he didn’t want to try that just yet. He thought Luke was good to go since it had been a year without any seizures. The doctor also was going to allow me to do the 4 month wean instead of the 2 month process.

But, right before we began, I decided on my own that I would do the 2 month wean. I realized I would rather it be ME that deals with the seizure IF he was going to have one during the wean. It was the end of my summer and if he was going to have it happen I would rather just get it over with before he starts being out of my care more at night. It was a tough decision to make but both my mom & Nick were very relived to hear my reasoning behind it.

We were scared to start the wean but we knew it was for his best interest. We knew the Anti-epileptic drug (AED) he was on now made him high as a kite, and developmentally, it was slowing him down. Dr. Sharp wanted him off the meds regardless. If he needed an AED it would be Keppra. But with a new med comes the uncertainty of it working for Luke and how it reacted with his body. Phenobarb worked so well for him. He only had breakthrough seizures in July of the previous year so that seemed to be *his* drug. But man, it really had it’s side effects.

The upside to weaning was that Luke would possibly begin to develop more without the barbiturate in his system. Dr. Sharp couldn’t guarantee he would take off like a rocket but that, hopefully, slowly he would begin to gain progress. We’ve been waiting so long for certain developments so we were ready to see improvement in that area. But one thing I was certainly looking forward to was seeing who my Luke was off mind-altering drugs. Luke began Phenobarb at 6.5 wks. At the time we began the wean he had been on it for 92% of his life by then. I just felt like I didnt really know Luke. I wish so badly sometimes I did get to see what Luke was like and I wonder if he would generally be the same or if he would be very much different?

When I’ve mentioned this before people try to convince me that Luke is Luke no matter what. Heh, true, but just seeing his personality change from one drug to the next has been drastic (in our opinion) so what would he be like without EVER having been on these drugs? Around family he’s typically more outgoing than any other time so I kind of feel like those family members don’t see that Luke is so delayed in some things. They’ve got those sweet rose colored glasses on. This isn’t bad though (since we love y’all so much).

Overall, people that meet Luke in the grocery store just assume he’s pretty shy because he looks so normal. If you didn’t know he couldn’t talk and saw him play a little you might think he was totally normal and was just taking in his surroundings. It’s easy to be with Luke and see him play and fall into a comfy little bubble involving his much needed routines, his excellent non-verbal communication (without signing), and his mediocre skills and that’s you’re normal. Then, you get around his age peers and it blows you away. Every time.

We’re so happy to watch Luke’s friends advance and display all these cute, impressive new skills. It’s such a joy to see the new things they like to do. I have to admit, when Luke does something age-appropriate it’s all I can do to not jump and scream for everyone to look at him just so they can witness him doing something appropriate.

It may sound like I’m stuck on milestones or development … maybe I am? At any rate… check back soon for Part 2.

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