Showing posts with label news. Show all posts
Showing posts with label news. Show all posts

Thursday, December 4, 2008

This Little Piggy

This little piggy looks better than it did yesterday!


It isn't slowing me down one bit.  It looks much better by comparison to Mark's toes, after the two times he broke them, one of those times was on our wedding day!  It doesn't feel too bad.  I have stayed loaded up on advil to help with the pain and swelling.  

I have a field trip for Ethan tomorrow to the Children's Museum.  Jamie Poppins, our friend and helper will be coming to watch Kay while we are out.  Straight from the field trip, I will be running to drop Ethan off at home, then whisking off to Javi's continuation IEP, to which I will undoubtably be late for.  I told Javi's dad to start with out me.  I only have 30 minutes between the arrival of the field trip bus and the start of the IEP.  Talk about cutting it close!!  Wish me luck!  With this troop, who has time to slow down?

Wednesday, November 5, 2008

Wonderful Wednesday

I love Wednesdays!  Now that we have our little angel, Jamie here to help out.  I am trying to get her some more hours using Javi's respite hours.  We have never tapped in to his hours, so we thought that we should start using them up.  Jamie is so awesome, I just love having her around to help with the kiddos.  I can actually make time to do our fun things like our Wednesday cooking days with little stress.  

Today, we are making Gingerbread men.  We are chilling the dough in the fridge, then we are going to roll it out and make the men.  Then on to baking and decorating.  I will post some pics of the boys creations to Flickr later (Click on the Flickr badge on the right column to view). 

My new keyboard should be on it's way to us, so I will have my laptop (cracktop, going through withdrawl) up and running again soon.  Right now, I am using hubby's slave top, but it is chained to my hubby's office, cuz I don't want to run the risk of another mishaps.  It's safer in here.   

It's so much easier to blog typing on a real keyboard.  Don't get me wrong, I love my iPhone, but I do go cross eyed typing on it and it does take longer since I am using two thumbs instead of all ten fingers and thumbs.  Plus, of course it is a lot slower than my laptop. It sure does a lot for a little handheld though!  I don't know what I would do with out it.

Starting on a new web project that should keep me pretty busy. May have less night time blogging time to comment, but I will still be reading and keeping up of course.

Javi school update: 
Tomorrow his teacher from last year will be doing her observation, so we are hoping for some good info there.  Our plan is still to change Javi's class, since we have not felt a solid connection with the school/class/teacher.  Just feel that it's a mismatch for Javi.  We are just waiting to see what the observations will show.  We are pretty sure that NSH is a good fit for Javi, but we are just waiting on the observations before making any moves.

Prayer Request:
Please pray for my mom this month.  She has been getting treatment for her anemia.  She will be spending every Monday in the hospital for the month of November getting iron infused blood cocktail transfusions.  We hope that this will help her feel better.  We are still waiting on results of her test to see what is causing the problem.  Please pray for her.  We can't live with out her, so we need her to be healthy and vibrant :)

Well, that's all for now.  Hope everyone is having a great hump day!




Tuesday, October 28, 2008

Sum it up...

Javi update on the school front...

Contacted Javi's teacher from last year, just at random to say hi. As it turns out, the ASD Program Specialist contacted her yesterday to ask if she would be the ASD consultant to observe Javi. We are thrilled with this, since she would know Javi the best in a school setting since she had him for two years in a row.

Also, just as I was formulating a response to her email....the Education Consultant I had requested through the Regional Center contacted us. Got him up to speed on the situation and now he'll be scheduling an observation too and attending the second IEP meeting.

Still feel that it may be a mismatched class setting for him. Javi gets really agitated when you ask him questions about school. He did tell me that the kids are teasing him and copying him during recess and lunch. He said "Yep, I'm still playing alone." Poor baby :( Breaks my heart to keep sending him when I know he is not happy.

Ethan has his Halloween parade and party tomorrow. We are making homemade popcorn balls to pass out to kids in class. The boys LOVED making popcorn on the stove tonight. They couldn't believe that you could actually make popcorn with out a microwave :) It really tastes a lot better than in the microwave. Javi said "Wow Mom, this tastes like the movie popcorn, but better." We just put a teeny bit of salt, no butter. Javi, Ethan and Daddy shoveled handfuls of it in their mouths. I'll probably have to make more popcorn before I can make the balls.

Kaylee had PT today. Ms. Bonnie, her regular PT is back, YAY!! She was happy with the progress that Kaylee has made while she was gone (a month). She did say we will determine whether or not her regular tennies will be enough support for her or if she will need orthotics. She is still pronating her feet. She said it's a tough call because Kaylee is not technically walking yet. She mostly side steps when she cruises. She did agree that it would be a good idea to look in to a pediatric posterior walkers since the doc said that the Topamax may inhibit her ability to build muscle tone at this dose. Since she already has low tone, it makes it tough. We are going to see if we can possibly check out a walker from the CP Library to see how well she does with it before we order one. Heh...maybe we can convince my grandma walkers are cool if Kaylee has one :)

Well, that's all for now. Have to get to making popcorn balls :)

Sunday, October 19, 2008

The Weekend Report

Well, as I said in a previous post, this has been a pretty somber weekend.

Friday, we "tried" to celebrate Mark's birthday, but it was tough to celebrate with so much sad new lately. I went and picked up Mark's favorite, sushi and I had chinese take out (not a big raw fish fan) and we just hung out at home and watched episodes of The Big Big Theory, which was at the very least, some comic relief from everything going on. We also cleaned up the garage a bit to get ready for the delivery of my Mom's fridge.

Saturday, made biscuits and gravy for the family then cleaned and headed to Wally Mart. I needed to pick up a gift card and a couple staples, paper towels and milk. Then we took delivery of my Mom's fridge via my uncle and cousin, along with a few other things. Thanks Mom! My mom is moving out of the apartment she has lived in for the last 11 years, so packing it up has been a challenge. She is set to move in with my Grandparents to help them out. She is over there everyday now, until dark, so it really has become pointless to keep a separate place. They really could use the help. It scares me that they are alone for even part of the day. I just wish there was something more I could do to help out, but it's tough with all we have going on and living 100 miles away.

Went to bed pretty early last night after reading RDI book for a little while.

Sunday, spent the day with Mark's Grandma and family, see previous post. We did find a great coffee place in Escondido called Safari Coffee on our way to see Grandma. Had a nice cuppa on our 40 min drive up. We had lunch at Chili's with Mark's parents. I suffered for the remains of the day for my choices to mix laco-coffee (I'm lactose intolerant) and spicy buffalo chicken mini sandwiches. Have had a double whammy of GiRD and lacto tummy all day and still suffering. Sure the emotional state isn't helping either.

The kids did really well this weekend, considering we were cooped up for most of the weekend. They were very well behaved at the restaurant and the hospital. They had the hospital staff and patients swooning. Everyone just kept telling them how cute they are, to which, we cannot dispute ;)

Hoping to see find that rainbow after all this rain, but it's tough right now. It still feels like the quiet before the storm. Wish that little black rain cloud would stop following us.

On another note, Javi's IEP is coming up this week. I feel like I'm going to have to get ready for a show down. We have been having some issues at Javi's school that need resolution. We are not entirely satisfied with his placement. I haven't been satisfied from the get go, but we were trying to be patient to see if things would get better once he got used to the new routine, school, class and friends, but it seems like they aren't. He seems to be having a rough time making friends. He says the kids are mean, so he just plays by himself. We have also primarily only had negative commentary from his teacher in his communication log. We are hoping to get to the bottom of what's going on. I am going to try my best not to be the mama lion and pounce on everyone at the meeting :)

Tuesday, October 14, 2008

Quick Kaylee Update

Kaylee has been doing marvelously over the past few days since being released from the hospital. No seizures or spasms that we have witnessed and she seems to be getting used to her new high dose of Topamax. She had a rough first few days, it made her wakeful and a little irritable, but at the same time a little lethargic. Think it was the lack of sleep! I was also out of town, which didn't make things any easier on her, poor baby!!

Yesterday, she stood up for the first time, totally unassisted!!!! Hooray! Wish I was quick enough to get a shot of it with the camera. We are one step closer to walking!!

Soon she'll be chasing after her boyfriend!

Ok, gotta run to PT. Can't wait to share the exciting news with them!

Friday, October 10, 2008

We're home!

It appears the new dosage worked very well. We tried to force an event with drug deprivation, but nothing of any real significance occurred. There were a couple blips here and there, but nothing like she was having for the last few days. Isn't that Murphy's Law?! This is a time when we really like Murphy! We are hopeful that the Topamax will continue to work. Dr. Neuro raised her dose one more time, just to make sure and said he wants to see us back in December. At that time, we are going to schedule a repeat MRI just to make sure there aren't any tubers putting pressure on the right cortex where he found some slowing in her brain waves.

Her focus appears to be just in the left frontal lobe, so that was excellent new to hear that it is isolated to one area of the brain. He is still suspicious of TSC, but is anxious to find out what Dr. Genes will say at the end of the month. He wants my sister and I to get tested.

I am completely exhausted. I still plan on going to the RDI conference tomorrow morning. We have respite care coming in for eight hours a day to help Mark out. I'll only be away overnight. Well, I'd better get some rest and get to packing for my next trip! Thanks everyone for all your well wishes, prayers and phone calls. I know I haven't been able to get back to everyone, but I promise I will when I get home from my trip.

Tuesday, September 30, 2008

Facts about IS from MarissasBunny.com

Stand warned, there’s mathematics and drama ahead.

• There are approximately 305,297,000 people in the USA

14.02 children are born (and survive three months) per 1000 people in the USA every year.

= 4,280,000 babies will be born and survive to three months old

Infantile spasms prevalences in research are variable and depend on which source you refer to. I’m going to estimate conservatively and assume a 1:1 male to female ratio, and use 1:4000 for males, and 1:6000 for females, averaging out to 1:5000 births afflicted by infantile spasms. The ratio is actually 1.05 to 1 male to female, so the actual number of IS kids is a bit higher.

So, with 4.28 million babies and a 1:5000 infantile spasms affliction rate:

• 856 kids a year are diagnosed with infantile spasms.

Infantile spasms resolves itself into something else at approximately 2 and a half years of age. Following that logic:

• 2,140 sufferers of infantile spasms currently less than 2.5 years old.

Infantile spasms is fatal in 1 in 20 of these kids before age 3, not due to accident. That makes 42 kids a year. ACTH treatment mortality ranges depending on the literature between 1:20 and 1:30. For the sake of argument, we’ll say 1:30, and that will account for both kids that go on multiple courses of ACTH and kids that never do. That’s still an additional 29 kids a year.

• 42+29 = 71 kids die a year from infantile spasm related causes

Removing all mortality statistics from IS kids, that’s 786 kids that survive to age 3. Accidents from drop seizures following IS resolution claim some more before adulthood at age 18. The numbers on accidents are fairly staggering depending on your source, but I’ll call it 1:20 again, for the sake of conservatism - this number goes very high in some studies. That’s another 40 kids before age 18. 746 kids survive to age 18. Overall mortality before age 18 is then about 12%- one in eight.

One more time, and in bold. One in Eight.

Look around your town, your supermarket, your place of work. Would you notice one in eight people gone? In what world is a 1 in 8 mortality rate un-noticeable or inconsequential? How many of these kids can be saved with better research, quicker or more accurate diagnoses, more community awareness, or a better support mechanism? I’m sure it’s not all of them, but given the current state of research on IS, a small improvement would make a huge difference.

IS kids have had one voice in the past- Danielle Foltz talked to the Joint Economic Committee in July about the price of rare disease drugs. Penny-arcade.com helped me reach over 60,000 more people, but it’s still not enough. I’m not Superman. I can’t sweep across the country bearing a red cape and talk personally to the parents of all 2,140 kids with infantile spasms, I can’t even catch the new diagnoses. It’s asking a lot of the parents of IS kids to be a public voice for their children individually.

Even with everything else going on in our lives, I’ve started the wheels in motion for a foundation for promoting awareness and providing support to IS parents. This is going to take time and money, so be patient with us. A week or so ago, I spoke with Mike Bartenhagen, another face in the battle against infantile spasms, about this and we’re both on board with this idea. As a group, we’re stronger and louder than we’d ever be individually.

If you want to help, please contact us. If you’re a parent of an IS kid, and feel you can offer sympathy, support, or advice to other IS parents in the future, especially the ones with new diagnoses, please let me know. Financial help is always welcome- please donate through the front page. These are the early, fragile days of any new foundation-to-be, and any and all help is welcome.

ABOUT MARISSASBUNNY.COM - Marissa is a baby girl who was diagnosed with Infantile Spasms on February 15th of 2008. Infantile Spasms is a serious pediatric epileptic condition that could leave it’s mark on her for years to come. Fairfax is Marissa’s Bunny - a shared name for stuffed rabbits that are traveling the world trying to spread awareness of her disease that has no reliable cure and is hard to relieve. Marissasbunny.com is a website dedicated to spreading the word about infantile spasms, with the goal of better diagnoses and enhanced support for parents with infantile spasm suffering children.

Autism Bites on Discovery Health Channel

Discovery Health channel will be showing a documentary on Oct. 1st at 8PM ET/PT. The title is: "Autism X 6" and it is the story about our family. It will rebroadcast on Oct 4, check listings for time.


We hope that by allowing our story to be told that it will do three things:

1) Increase the awareness of Autism
2) Increase the understanding and tolerance of Autism
3) We hope that we can be of some help to other 'Parents of Autism'

Please tell everyone you know to watch it. Your family, friends, neighbors, religious and political leaders, etc. Also post it, email it to any and all groups, forums and email lists you have.

If you would like to contact us personally go to autism_bites@yahoo.com or our website: AutismBites.com

Thank you!

Thursday, September 11, 2008

Friday, April 25, 2008

Teacher Appreciation Week, May 5th-9th

Teacher Appreciation week is just around the corner, May 5th-9th. Don't forget to show your kid's teachers how much you appreciate them. Especially those who work with our special needs children. It takes a special kind of person to do their job everyday. Think of how we feel with our SN kids home on vacation and just think, they deal with 8-12 SN kids in their classroom almost every day!! Also, don't forget their wonderful support staff, the aides, student teachers, volunteers and specialists.

It takes very little to show your appreciation. A homemade card, some homemade cookies, a single flower, a gift card to Starbucks for a coffee, even a McDonald's gift card (You deserve a break today, is one of their slogans).

Just wanted to get the word out there. I hope you take the time and effort to recognize your child's teacher in a special way :)

Thursday, March 27, 2008

CNN News about Autism

This sounds all to familiar! When Javi went through everything, we were pretty much told the same thing. You could have taken this out of our diary.

ATLANTA, Georgia (CNN) -- When her son Justin was a newborn, Shannon Kinninger looked up from the kitchen where she was washing dishes, and saw a large, heavy toy fall on his head. Justin didn't cry.


Shannon Kinninger feels her son Justin's autism diagnosis was delayed.

Kinninger thought that was odd, and it wasn't the only thing that seemed strange about Justin. At her weekly playgroup, she watched the other babies hit their developmental milestones more or less on schedule. Justin lagged far behind.

"When he was supposed to be sitting up, he wasn't sitting up. When he was supposed to be holding his head up, he wasn't holding his head up. When he was supposed to be rolling over, he wasn't rolling over," says Kinninger, a nurse who lives in Fayetteville, Georgia.

Kinninger brought up her concerns to her pediatrician, but he told her not to worry. "The doctor kept saying that boys develop more slowly than girls," she says. "He kept reassuring me he'd be OK." more...

Saturday, March 8, 2008

Vaccine settlement complex, may not be first

On April 2, CNN will report on the global impact, latest science and controversies related to autism for the first "World Autism Day." Watch for coverage on CNN.com and CNN TV.

ATLANTA, Georgia (AP) -- For those convinced that vaccines can cause autism, the sad case of a Georgia girl, daughter of a doctor and lawyer, seems like clear-cut evidence. The government has agreed to pay the girl's family for injury caused by vaccines.


Hannah Poling's parents, Terry and Jon, allege that vaccines played a role in Hannah's autism.

But it turns out it's not that simple -- and maybe not even a first.

The 9-year-old girl, Hannah Poling, had an underlying condition that may have been worsened, triggering her autism-like symptoms.

Her parents believe it was the five simultaneous vaccines she got as a toddler in one day eight years ago that did it. Government scientists say something like a fever or infection could have set off the problem -- but they didn't rule out the vaccines either.

This week, government officials said they have agreed to pay the Polings from a federal fund that compensates people injured by vaccines. The amount is not yet determined.

While parents and advocates for children with autism say the case is a landmark legal precedent that signals the government is finally conceding potential autism-related risks from childhood vaccines, government officials are saying it's nothing of the kind.

"This does not represent anything other than a very special situation," said Dr. Julie Gerberding, head of the U.S. Centers for Disease Control and Prevention.

Her comments came after the Polings, from Athens, Georgia, held a news conference Thursday to talk about their daughter, who accompanied them. At the briefing, Hannah seemed socially engaged with her caregiver, but later in an appearance on CNN's "Larry King Live," she was quiet and seemed to be in her own world. Larry King Live goes behind the scenes with the Polings »

As a toddler, they said she was a bright, normal-behaving child until she got five shots when she was about 18 months old. She was a little behind on her vaccinations, so the decision was made to give her five shots.

Almost immediately after, she was screaming, feverish and irritable. Then, her behavior gradually changed so she would stare at fans and lights and run in circles.

"It wasn't like a switch being turned off. It was more like a dimmer switch being turned down," said Hannah's father, Jon, a 37-year-old neurologist. Paging Dr. Gupta blog: Parents still see good in vaccines

It was heartbreaking, said her 47-year-old mother, Terry, who is trained as both a lawyer and a nurse.

"Suddenly my daughter was no longer there," she said.

The family filed a claim with the federal vaccine compensation program in 2002, which the government ultimately decided to concede before any evidentiary hearing.

Don't Miss
Parents share pain of daughter's decline
WebMD: A pediatrician's thoughts on vaccines and autism
I-Report: Are you living with autism? Tell us your story
Autism Speaks: Advocacy, awareness
The case may not be a first, said Gary Golkiewicz, chief special master for the U.S. Court of Federal Claims. He oversees the special "vaccine court" which rules on requests for payments from the vaccine injury fund.

"Years ago, actually, I had a case, before we understood or knew the implications of autism, that the vaccine injured the child's brain caused an encephalopathy," he said. And the symptoms that come with that "fall within the broad rubric of autism."

And there are other somewhat similar cases, Golkiewicz says, that were decided before autism and its symptoms were more clearly defined.

Hannah has a disorder involving her mitochondria, the energy factories of cells. The disorder -- which can be present at birth or acquired later in life -- impairs cells' ability to use nutrients. It often causes problems in brain functioning and can lead to delays in walking and talking. I-Report: Are you living with autism? Tell us your story

The Polings were exploring two theories to explain what happened to Hannah. One is that she was born with the mitochondria disorder and the vaccines caused a stress to her body that worsened the condition. The other is that the vaccine ingredient thimerosal caused the mitochondrial dysfunction, Jon Poling said.

CDC officials decline to talk about the Poling case, but they say it should not be used to draw conclusions about risks for other children.

Scientists believe that in cases in which a mitochondrial disorder causes a child's brain function to deteriorate, the disorder exists and then is worsened by a fever, infection or other stress on the body.

Scientists don't know if a vaccination -- independent of fever or infection -- can cause such a stress, said Dr. Edwin Trevathan, a pediatric neurologist who heads the CDC's birth defects center.

Others echoed his assessment.

Health Library
MayoClinic.com: Autism
"There are no scientific studies documenting that childhood vaccinations cause or worsen mitochondrial diseases, but there is very little scientific research in this area," said Chuck Mohan, executive director the United Mitochondrial Disease Foundation, a Pittsburgh-based group that raises money for research.

Mohan said there are more than 100 types of mitochondrial disease, and genetic tests can find only a couple dozen.

"Most children with autism do not seem to have a mitochondrial problem, so this association ... is probably relatively rare," said Trevathan.

Some research suggests the disorder occurs in one in 4,000 births, but some experts believe the rate is closer to one in 2,000, similar to childhood leukemia. And it is often just as fatal, said Mohan, who lost a daughter to the disease in 1995.



Other federal vaccine advisers seek to portray Hannah Poling as an isolated if not unique case.

She is "not a typical autistic child," said Dr. Paul Offit, chief of infectious diseases at Children's Hospital of Philadelphia and a longtime government vaccine adviser. "It's not a precedent-setting case." E-mail to a friend

Monday, March 3, 2008

FDA ACCEPTS REVIEW FOR VIGABATRIN'S USE FOR INFANTILE SPASMS AND COMPLEX PARTIAL SEIZURES

The Tuberous Sclerosis Alliance is pleased to announce that the U.S. Food and Drug Administration (FDA) has accepted two new drug applications from Ovation Pharmaceuticals, Inc. for Sabril® (vigabatrin) addressing two types of epilepsy, including infantile spasms. This is exciting news for the TSC community because this is the first step toward review and hopefully approval of vigabatrin for use in the U.S.A. Vigabatrin is currently marketed in more than 50 countries worldwide.

The Tuberous Sclerosis Alliance is advocating for an expedited review of the application, but we anticipate the process will take six to nine months. We will keep you informed as we find out more over the coming weeks.

Infantile spasms are a somewhat rare, but catastrophic, form of epilepsy, which almost always start before one year of age. They are one of many symptoms that arise from TSC and about 50 percent of children with tuberous sclerosis complex experience infantile spasms. Currently, there is only one off-label treatment for infantile spasms. Sabril (vigabatrin) would be the first FDA approved treatment. “Effective treatment options in the United States for infantile spasms are rare,” said Kari Luther Carlson, CEO of the TS Alliance, “and this is a positive step for our community.”

For complete information, read the news release from OVATION
here.

Thursday, February 28, 2008

Combo Vaccine Linked To Kids' Convulsions

My friend emailed me this post this morning:

ProQuad Protects Against Measles, Mumps, Rubella, Chickenpox

POSTED: 6:02 am PST February 28, 2008

ATLANTA -- A new study finds children suffered higher rates of fever-related convulsions when they got a Merck combination vaccine instead of two separate shots.
The results prompted a federal advisory panel to back away from its preference for the combo vaccine ProQuad, which protects against measles, mumps and rubella as well as chickenpox.
In the study of children ages 12 months through 23 months, the rate of seizures was twice as high in toddlers who got ProQuad, compared with those who got one shot for chickenpox and one for the three other diseases.
The lead researcher of the federally funded study said the risk translates to about one extra case of convulsion for every 2,000 doses of the combo vaccine.
The study focused on children who develop fevers and then go into convulsions. It's an occurrence that frightens parents but usually has no lingering consequences. There were no deaths in the new study.

Wednesday, February 27, 2008

Larry King, Autism Special

Did anyone happen to catch the piece on Larry King about Autism?  It was a great piece.  They featured: J-Mac, Holly Robinson-Peete, Doug Flutie, and Toni Braxton.  They also had an appearance by a doctor with a son with Autism, who specializes in patients with Autism.  You can find more info about this show at the following link:

Larry King, Autism: Solving the Puzzle

It was a great show.  Definitely still a lot  of debate in the media whether or not vaccinations cause Autism.  I am with J-Mac's mom.  While I am not devaluing the need for finding a cause, let's stop spending so much time debating about where it came from and do something about helping those who are affected.  We can start by beginning to change people's view about people with Autism.  Many are very capable individuals, even those who are considered more "severe". Trying to put these kids in a box and labeling them Autistic, can seriously devastate families and individuals affected by Autism.  My sons will never be "normal", but the more accepted they are in more typical activities, they may have the opportunity to unlock hidden potential. My sons are very functional and do have a good chance for independence, but they do need special help in certain areas.  We are fortunate to live in a community where we have lots of support with services, school, and special activities.  Not everyone is so fortunate.  It is my hope that some day there will be more opportunities for individuals affected by Autism everywhere.