I haven't written for awhile. I keep trying to commit the time to keeping the blog current, but sometimes life gets in the way.

Cameron (my almost 9 yr old with Angelman Syndrome) has now officially been on the ketogenic diet for a few weeks. I mentioned in an earlier post that we are hoping to control some of the seizures that we don't see (with the diet) and to hopefully start to wean him off at least one seizure medication.

Learning about the diet in our case was fairly easy. Because Cameron has a feeding tube, it takes most of the hard work out of it. We don't have to deal with the discipline issues of keeping him away from certain foods. The dietitian carefully calculated out his formula requirements for him, so that takes the hard part out of that. I find it ironic that our original dietitian tried to talk us out of trying it, partially because of how much work was involved. (what work?)

The first week or so after coming home from the children's hospital, Cameron was pretty lethargic. We have no idea if that was diet related (although I'm told it can be) because he does that from time to time anyway. Then he got cranky. That wasn't pleasant. He got downright, inconsolable cranky for several days. Again, I have no idea what that was about. (Which is what I hate most about having a non-verbal child- how he can't explain to me what is wrong).

The past few days, Cameron has been a sweet, lovable, extremely happy little guy. To the extreme. I'm loving it. The funny thing is, he seems to be quite clear minded (not noticing any new skills yet though). He's looking around, taking everything in. However, we're pretty sure he's got quite a bit of little seizure stuff going on. I don't know if I can just see it more because his eyes seem so "clear" otherwise? We think we're seeing the return of drop seizures, and lots of little blinks and flutteries going on- just something "different" with his eyes. But his mood is fantastic. So, I'm trying not to panic. I'm optimistic that this will all work out in the end and that he will adjust to the diet and do well.  I'll keep you posted!

I was asked recently to do a written interview for SpecialNeedsKidsTalkRadio, to discuss my son, my experiences with Angelman Syndrome. Trials, tribulations, celebrations. How he & his disorder inspired me to start my own business.

Thought I'd post the link for my readers to check out:
WRITTEN INTERVIEW

The blog owner is a great gal (met through Twitter). I encourage you to check out her very informative site.

Well, the countdown is on. Today is April 12th. My 8 year old son is being admitted in less than a month to the children's hospital (May 11th) to be put on the ketogenic diet. I'm a little nervous, but also looking forward to seeing if it can help him.

Cameron's visible seizures are under control, except  for a few breakthrough seizures we've seen in the past year. So, why are we trying the ketogenic diet with him? (He's the lowest functioning child I've ever heard of). Because we know he *should* be functioning at a higher level for someone his age with Angelman Syndrome. The neurologist and I have wondered if he has a 2nd genetic condition affecting him, and tossed around the idea of testing him, but personally, I don't know if I want to know.

We know from doing an EEG that Cam is experiencing seizures, even though we can't see them. So, it is hard to know how much those seizures are affecting what he can and can't do. He has also been on very sedating seizure meds for several years. Between the seizures and the meds, we are assuming that some of what he CAN do is being clouded. We're hoping that with the diet (as a seizure "medication"), we can wean him off of some of his sedating meds. And we're also hoping it will help the seizures we aren't seeing. I'm not expecting miracles, and I know that some people have experienced "miracles" with their kids and the ketogenic diet. But, what I am hoping for is some kind of mental clarity for Cam. I'm hoping that he can make more eye contact, and focus more. I'd like to see him being able to use his hands better to functionally pick something up.

What is the ketogenic diet? It is a very high fat, adequate protein and no carbohydrate diet that typically kids go on to help them get seizure control. I am including a few resources below for you to refer to for more indepth information if you're interested. I was a bit hestitant in the beginning about putting my little guy on a diet so high in fat, but typically the kids don't stay on it for more than 2 years, and it is really any healthier to be pumping all those drugs into his little boy long term? I doubt it.

We received some resistance from our local pediatric nutritionist in the beginning on trying this with Cam. In our province (New Brunswick), it hasn't become a popular method of seizure control yet, and to be fair, she hasn't seen a lot of good outcomes yet. But, the children's hospital in Nova Scotia really views this as a very valuable treatment, and they have a whole system of professionals and such in place. This is why we are going there to start it out, and we'll consult with them as needed. For us, it will be much simpler to do this with Cam, as he is almost fully gtube fed, and he honestly doesn't care if he eats by mouth. It will be relatively easy for us to measure out his needs and give them to him by formular, whereas a child eating by mouth has to have every single item carefully weighed, and you'd have to try to keep your child from eating those 3 cheerios (or whatever carbs) that could throw them into seizures, etc. Yes, for us there will be much less complication.

Cameron got a little bit of chocolate for Easter today. He'll get to have a nibble of that, then no chocolate again perhaps for 2 years. For him, he won't mind. For one of my daughters, it would be torture (for them, and for us!)

So, in less than a month we will go and be admitted. Cameron will have tests done (an EEG and blood tests) and they will fast him and monitor him and his blood levels. And we will introduce the new formula and vitamins and we will be taught exactly what we CAN feed him by mouth if we are to give him something.

I'm very fearful of messing with the seizure control we DO have, but I am excited by the possibility of more mental clarity for him, and giving his body a rest from the medications. I'd appreciate if you could keep us in your thoughts and I'll keep you posted on how we make out.


RECOMMENDED RESOURCES:

The Ketogenic Diet: A Treatment for Children and Others with Epilepsy is a book that the children's hospital sent us in preparation for the diet. I haven't read it all yet, but it is a great book (obviously, if it is the book that they recommend as a resource)

Keto Kid: Helping Your Child Succeed on the Ketogenic Diet -I've heard Deborah Snyder speak in an interview about her experiences.

I wanted to share with you a communication device that is very simple, and something I really didn't expect to have the effect that it did.

My son is nearing the end of grade 3. He has been included in the school system with "typical" kids since kindergarten. I didn't hold him back at all, because I wanted him to continue through with the same students, and continue the bonds that he already had. Cam has had a few children really be interested in him, but because of his limitations with fine/gross motor and communication, they really hadn't bonded with him quite as much as I had wished. Of course, my heart longed for him to have "friendships" and to have more interaction, but it didn't really happen.

When Cameron transitioned to grade 3, he went from a primary school (K-2) up to an elementary school (3-5). I was nervous about the transition. The same kids were moving over, but there were also older kids, and I worried about kids teasing or being mean, or just not "getting him" or ignoring him. With the new school, Cameron had a new teacher assistant, this time a male. I LOVE the TA (a whole other blog entry). The TA is so good at including Cameron in where he can.

There was a Step by Step (with levels) communicator (from AbleNet) that came with Cameron from the previous school to the new one. Between the TA and I, we decided that we would use the button device to record messages back and forth between school and home. I knew this wasn't really functional communication in the way that Cameron can't decide or choose what to say (I'm recording on it), but I thought it would still help bridge the gap with the other students. I am SHOCKED to say that this little button has made the HUGEST difference in Cam and how the kids perceive him.

(photo from www.enablemart.com)

I record a message on the button in the morning before he goes to school. Often I do it as if it were him doing the message (I went out with my family last night for dinner and did ____, I had my cousins over on the weekend for a sleepover, etc.) Sometimes I get one of his sisters to leave a message on there. I've also left funny messages.

His TA has scheduled times in the day where Cam gets to share about his evening or weekend with his classmates. They look forward to listening to it. Then at the end of the day, the TA records a message to come back, saying what they did in school, or if they had something special going on they'll tell me. Or sometimes they will record something that Cam was listening to or did on the computer. My favorite is when his friends from school leave messages for him, or when I press play and I hear "GOODBYE CAMERON!!!" from the entire class. (and of course, mommy gets teary eyed).

The TA has said that this little bit of extra communication has made an amazing difference in how they perceive Cameron and interact with him. He said they often fight over who gets to leave a message, or who gets to push him in the wheelchair at lunch. When they have their "kindness week" at school, they often target Cameron to perform their act of kindness for.

I'd highly recommend trying out this simple idea if you have a non-verbal child, especially one who is an inclusion program in school, who is struggling with communication.

Here is a link to AbleNet's Step by Step Communicator.
www.enablemart.com/Catalog/Basic-Communicators/Step-by-Step-Communicator-with-Levels

This one has "levels". You may not necessarily need levels.
I encourage you to visit the link to see their tips on how to use this device. And, it is much more affordable than some of those more complicated devices on the market.

I met the most amazing person today.

I went to a family get-together (a birthday gathering for my grandmother), and I was told that a very nice woman would be showing up (the long term girlfriend of my aunt's brother). I was told she worked with special needs children, and that I would really like her. Knowing how sweet the rest of the family is, I was looking forward to meeting her. I didn't realize what an emotional day I was about to have.

She showed up, and I knew immediately that I liked her. She just had a "nature" about her that was kind and you couldn't help but like. She works as a teacher assistant- used to work with young children, but had recently been relocated to the high school. Well, of course, I like anyone who chooses to work with our special kids She then opened up to me about a little boy she had raised as her own from birth to 3 years of age. He had been born with a rare chromosomal disorder, and like my son didn't walk or talk, didn't sit up by himself yet, had hospitalizations in the same children's hospital my son had spent time in, had seizures and sensory issues and even a feeding tube, just like my little guy. She told me they had even wondered if her little man had Angelman Syndrome like Cam, but no, he had something different.  She told me how she got resistance from people who knew her, because she wasn't a young lady herself and caring for him was hard on her, but her love was so strong it didn't matter. Those people are so special- the ones who choose to take on something so involving, children who aren't even their own. It was all I could manage to hold it together when she showed me his photo.

I didn't ask details about how he died, but he passed away at 3 years old. But I did ask how long ago it had been. Only a year or so. Ugh, so fresh...

Of course, she was very interested in Cameron, whom I had there.

I was sitting, holding Cameron later on the couch, and she approached me. "Can I ask something of you?" she said. I would have done anything for this woman at this point, I was so touched by her story. She had one simple request: "Can I hold Cameron"?

My heart sunk to my stomach. I totally knew why she wanted to hold him. She was missing that quiet little snuggle-ness of her little guy, where you lovingly stroke his sweet head and face, and he snuggles into you, giving a contented little sigh. It's those moments like that that other parents don't understand, unless they have a lower functioning, and non-verbal child like our boys.

She held him for a long time, until it was time for her to leave. Her eyes welled up with tears on several occasions, and so did mine- I kept having to leave the room. I know she didn't want to let him go, and her heart was aching. I am so sad for her. I told her she was welcome to come visit whenever she liked, and I hope she will. I think she will. It's kind of strange to meet someone that you share such a deep respect and mutual understanding with right away. And, in a world where so many people don't know how to interact with my son, I'll never forget how lovingly she treated by boy.

I dedicate this post to her little angel.

I recently had this article about me and my son come out on the front page (!!) of a local newspaper. I really love this article. The reporter was great to interview with, and I found this to be the most accurate article written about us yet. It's always nice to get the word out on Angelman Syndrome whenever I can too.

'Mompreneur' proves hard work pays off

Jennifer Fiander has parlayed a family joke into an eBay award-winning business and while she's not entirely laughing all the way to the bank, she's aiming to be on Oprah one day.

The Hampton mother was recently named eBay Canada's 2008 Mompreneur of the Year, which comes with a $2,000 prize.

After 1,600 transactions on the auction website, Fiander has a 100 per cent positive feedback score and still chats with many customers who search out products at her Lil' Angel Gifts eBay store and on her own website at www.lilangelgifts.com

A graduate of St. Thomas University in Fredericton, Fiander studied here for five years.

She took a double major in English and psychology, before leaving university with her teaching degree in 1998.

While she loved living in the capital city, when Fiander met and married her husband Corey and had her first child Cameron, she needed to be closer to her family in Quispamsis to help her special needs son.

Cameron, now 8, was born with a genetic disorder called Angelman Syndrome. Because of their generally happy and sweet personalities, parents and caregivers often refer to people with AS as Angels.

To Fiander and her husband, Cameron became their Little Angel Man, but he came into the world with a litany of ailments - little or no use of words, seizures, sleep disturbances and problems walking.

As an infant, Cameron slept so poorly, Fiander quickly became a sleep-starved mother.

To give her a break, her mother Cherri Belyea volunteered from time-to-time to take her grandson, but fretted about the proper way to look after him.

"Just as a joke, I did an instruction manual that would accompany Cameron and I put it in his diaper bag," she said.

For fun, she likened her baby to a product that required fuelling and waste disposal handling.

"People always said babies should come with an instruction manual and now they do," Fiander told Belyea.

Fiander wrote the book in 2000 in the wee hours of the morning on a beat-up laptop that barely had enough memory to run her printer.

"I laid it out, printed it off and took it to Staples at the time and had it all bound and ready before I told my husband I was working on it. I just tinkered with it and got it done and stuck some clip art in it.''

When she showed it to her husband, he thought it was cute and assumed she'd bought it at a store. When he realized his creative wife had written it, he was gung-ho for her to sell it.

"I had shown a few to family members and I had given a couple away at baby showers," Fiander said.

Through word-of-mouth, she started to get orders for the Instruction Manual for Babies and produced them from home.

Her second book - Organizing Your Child's Special Needs - is a journal to write down everything you have to remember or are likely to be asked about your child.

"Cameron had a lot of doctor and hospital visits in his first two years of life. Medical students would ask you the same questions over and over and they always want a thorough history of everything. They want to know dates of hospitalization. When did the problems with seizures start? What type of medications were they on? How long were they on them? What were the effects?" Fiander said.

"I needed a little book to keep everything straight and I needed it small so it would fit in a bag. I did it for myself, but I made a copy of it and put it on eBay (in 2002). That was my first eBay experience.

"Parents found it on there and they just started bidding it up and up and up and there were bidding wars for the book. So, it was obvious, they needed this too.''

Eight-months pregnant with her second child, Fiander borrowed $5,000 from a business organization that helps budding entrepreneurs. She purchased a better computer and a binding machine so she could make the books at home.

Armed with another $2,000 training allowance, she took a course in HTML, so she could use the computer language to develop her own website, in addition to selling on eBay.

With the success of her two journals, Fiander branched out. She's written all kinds of diary-style journals for all occasions and for all types of people.

Her favourite product is her wedding party journals where brides can give a mother or father, spouse-to-be or other special people in their lives thoughts about their relationship under such headings as "Advice you have given me that I'll always remember" or "What you've taught me about things, life or myself."

The journals are unabashedly sentimental - as Fiander freely admits is a facet of her personality - and guaranteed to generate tears.

Although there's huge competition in the wedding market, Fiander has excellent word-of-mouth reviews.

Australia and United Kingdom customers are lining up behind her primary market in the United States to buy journals and she's added e-journal products to the mix.

To produce higher-quality books, Fiander now farms out production, which has increased costs and she hasn't hit the big payout yet.

"I'm in the in-between stage. Every year, I'm steadily growing a little bit more and a little bit more."

While her son Cameron now goes to school, along with his sister Kennedy, 6, Fiander still has a two-year-old daughter Peyton at home.

"My plan is to just keep growing my business a little bit more every year until she goes to school.''

Fiander said anyone who has seen her journals, keeps encouraging her.

"Whenever I would take that little record book to the hospital, the nurses would says: 'Wow, you're going to make Oprah some day,' " Fiander said. "It would be nice."

Her husband is 100 per cent behind her, but since the salesman has really good health insurance, Fiander said she won't let him quit his day job.

"He believes in me and he's stuck behind me, but he's waiting for the big payout. It will come," she said. "It's growing, so I'm happy. I have a balance."

Day 2 of 4 at the rehab center. I'm still shaking from being off the drugs for 3 days. I need my crack fix...

Oh, that was another rehab story  You want to hear Cameron's:

 

Day 2 of 4 at the rehab center. Little Cam got NO sleep last night, and has not fallen asleep yet today (early evening). He had a myoclonic seizure at lunch at Boston Pizza, which made us rush our meal, and made us very nervous. This is the 2nd myoclonic seizure I've seen him take, the 1st one my husband has seen. They are not the large convulsive type, so its not like we caused a scene (no one noticed), but he acted weird afterward. We paid early (while we were eating) and were prepared to run if we needed.

I hope he falls asleep soon.

 

Day 1 went very well at the physical rehabilitation center. He was fussy for activities today (day 2). Hopefully tomorrow will be better. It is interesting to see the bathroom modifications, and talk to OTs who ACTUALLY use modified bathrooms and know what they are talking about. I can picture our layout of our house a little better. I know, what house???  haha, someday...

 

We tried out a different type of walker today (a Rifton, right now we are using a pony walker). It looked promising. We need to motivate him with something highly motivating, to get him moving. Like, maybe having Shakira stand at the end of the hall. He'll be running to her in no time.

 

Cam's TA will be here for the next 2 days to learn and give input from school. The school/district had only allowed for one day until I called the woman in charge at the district.  Now he will be here for BOTH days   She gave in quickly. She's seen me in action before...

 

The cafeteria had very scary looking oatmeal which kind of resembled gritty cement. I think it doubles as pothole filler. I avoided that. Although there are drawbacks to being here (no french fries- I HATE this healthy hospital stuff), there are some benefits to this place- like a washer that will dry my clothes. (what the- ??!?!?!?) I know I said I was looking forward to no housework for 4 days, but I can't wait to do laundry and try it out. I'm also loving that heat is free, so I've had the heat cranked for 2 days. My husband is whining because his skin has been sucked dry of all moisture, and my lips are dry and cracked. But I'm warm, so that is all that matters. We may go back home looking like raisins.

 

OT just dropped off a measuring tape. I'm off to measure the space between the tub and toilet. Oh, what fun!

Things have been pretty hectic lately. Transitioning my son to a new school, trying to get several pieces of seating equipment covered for him (ugh). But, I have some fantastic news! I'll post the article that came out today, rather than going into detail, but I'd like to say that our small community is absolutely amazing, and this is exactly the reason I love it here, and plan on raising Cameron here!

HAMPTON - Balloons, cake and smiles. For eight-year-old Cameron Fiander, it wasn't a birthday party that brought him to the Hampton Save-Easy Aug. 21, but he was the centre of the celebration nonetheless.

Cameron, his parents Jennifer and Corey Fiander and his sisters Kennedy and Peyton were guests of honour as grocery store owners Coleen, Alan and Tony Damon happily handed over a $20,000 donation to the Hampton family toward their purchase of a wheelchair van.

Cameron has Angelman Syndrome, a rare genetic disorder named for Harry Angelman, the doctor who discovered it. Children with the disorder are generally happy with sweet dispositions. Although developmentally delayed with little or no use of words, they're easily excitable and frequently laugh and smile.

Cameron has these symptoms as well as physical symptoms, which require his use of a wheelchair. The family of five has been using the family car to get around, but it takes some manoeuvring to get Cameron in and out of his wheelchair and in and out of the car.

Guy LeBlanc, of Dartmouth-based Atlantic Wholesalers, was there to witness the culmination of a regional fundraising effort through the President's Choice Charity.

"Staff from Save-Easy stores can donate whatever they want, it comes out of their pay, and when customers go through the cashier we ask if they'd like to donate $1 or $2 to PC Charity," said Alan Damon, "and everything we raise here stays in Atlantic Canada."

Jennifer Fiander learned of the charity last year and sent in the required forms and information about her family's need for a rear-loading wheelchair van for Cameron. The forms asked for the name of her local Save-Easy, so she had a feeling she might be hearing from the store. A couple of weeks later, she got a call from Coleen Damon.

"She was so excited. She said, ‘I have something to tell you try not to cry!'" Fiander said as her family, store employees and customers enjoyed cake after the cheque presentation.

"This small community's been great," she said.

Coleen Damon echoed her sentiment.

"It's such a small town, it takes no time to get everything organized," Damon said, adding the Lions Club and Rotary Club are working on a community fundraiser for later this fall to raise the balance of funds required for purchasing the van. About $8,000 in government funding is available, leaving the community with a fundraising goal of about $12,000 for the specially-equipped van worth about $40,000.

Since 2002, Jennifer Fiander has run a home-based business, Lil' Angel Gifts, which allows her to care for Cameron at home, while sharing her experiences and advice with other parents of special needs children. Through her business, she also promotes awareness of Angelman Syndrome.

Inspired by her son, she started by producing instruction manuals for babies, then created a special needs record book, and expanded into the lucrative bridal and stationery markets.

Over the years she has developed her product line into a collection that includes a variety of journals, note cards and other items. She conducts most of her business online.

Her company logo was even designed to look like Cameron a smiling little boy with brown hair and glasses.

A Cameron Fiander Trust Fund has been set up at the Bayview Credit Union and anyone interested in donating should do so there.

We’ve been putting a lot of thought into trying out the ketogenic diet with our son lately, but we’re not quite sure whether or not it is the right choice for him for seizure control. Our situation is a little unique:

Cameron is 8 years old. He suffered from drop seizures when he was younger. We were lucky enough to get these under control around 2 and a half years ago. We were hoping that when Cameron’s seizures got under control, we would start to notice a progression in his skills (Cameron has Angelman Syndrome, and is as “low functioning” as I have ever heard for AS). We were thrilled that with a mixture of 3 meds, his drop seizures were finally under control, but we didn’t notice any benefits in the way of progressing with skills. I started to think that perhaps this was just the way Cameron was, and that his Angelman Syndrome was more severe, etc. We (neurologist and I) also wondered if maybe he had a second genetic disorder, but being faced with another dismal diagnosis didn’t really appeal to me, so I didn’t push for more testing.

We also wondered if perhaps Cameron had more seizure activity that we weren’t seeing. So, we repeated an EEG while Cameron had “seizure control”, and it did show significant activity. Around this time, I started paying attention with great interest to stories from other parents about the ketogenic diet- a radical, strict diet used to help control and even eliminate seizures in children. Not only was I intrigued by the stories I heard, but I kept hearing about how not only will the seizures affect the child’s progress and skills (including seizure activity we can’t see), but how the meds can also dope up the child to the point they can’t learn new skills.

So, my brain is reeling with this- perhaps the reality I accepted that this is just the way Cameron is, the way he is meant to be, isn’t really true. I’ve always thought there was more to Cam than he could express- a great deal more. Is it masked with seizures and harsh drugs that he’s been on since the young age of 2?

My husband and I met with the our local nutritionist to discuss the ketogenic diet, and hopefully weaning Cameron off some or even all of his medications. The problem with the diet is that it takes complete dedication and control. Cameron is mainly g-tube fed, which actually makes the diet easier to implement, but it would mean most of the things he CAN eat by mouth, he would no longer be able to have. I don't really want to have to give up on his skill of eating all together.

We also have concerns about things beyond our control- like, what happens when his little sister pops a Cheerio in his mouth- will it throw him into seizures?

Most importantly though- we are afraid to mess up the seizure control we DO have by playing around with things. Most kids are put onto the diet when drugs have failed- not when drugs seem to have helped them.  What if we cause major problems?

I’m filled with mixed emotions- excitement at the possibility of Cameron having a better quality of life. The possibility of maybe getting to “see” his personality a little more. Hopeful that we can get him off some of those horrid medications. Scared to stir up seizures that could do more damage or that we’ll be unable to control. I’ve thought a few times that if it were me, I would probably take the risk, as I think most people would if they could make their own decision. It is hard to make these life-altering decisions for your child when you can't get their input...

 

 

 

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