It was a year ago today that we made our first trip to the Fragile X clinic at Rush for the beginning of the arbaclofen trial. I have such mixed emotions today. I can't forget the amount of hope I had for those little pills. I remember how I stared at Ayden each day watching for anything different. Then I slowly saw my baby emerge from the fog of anxiety he was living in. One year ago my baby was barely saying fifteen words. They were never spontaneous.Today, he greeted me by name. Told...
Tuesday, October 29, 2013
Wednesday, September 18, 2013
When do you make that call?
"Do you think we should call early intervention?"I'm asked this question a great deal and I'm very happy to discuss it with anyone. One of the biggest reasons for me starting this blog was to help other parents. To give other families help and hope - things I didn't have when we first began our journey.See, as a parent I've been in your shoes. I've been left wondering why my child isn't doing things others his age are doing. I've posed the question to his pediatrician and (like many of you) were told...
Monday, July 22, 2013
Fragile X Awareness Day 2013
I've been living with Fragile X my entire life, but only been aware of it for about half of that time. Even with 16 years of knowledge, I've only been intimately aware of exactly what Fragile X is since March 6, 2011.
Some studies indicate a prevalence of as low as 1 in 150 women are carriers of Fragile X. It can go undetected for so long, until the day arrives that your young child finally receives an answer for their developmental...
Friday, July 19, 2013
A Day at the Park Fundraiser: The Scoop
You probably heard about our fundraiser happening this Sunday... named "A Day at the Park", it is the first Fragile X Awareness fundraiser event in mid-Michigan.
For those coming to this blog for the first time... Mr Awesome and I have three children - our oldest son Ayden has a dual diagnosis of Fragile X Syndrome and Autism, while our youngest daughter Emmalina also has Fragile X Syndrome. Our middle son, Issac is not affected...
Thursday, July 18, 2013
Post STX209 Update
I've sat down to write this update so many times and then walked away, unable to put words down. We are living day to day and taking each hurdle as it comes - looking at the big picture of changes is really difficult for me still. All my time and energy have been thrown into readjusting to what has become our new normal.We began weaning off arbaclofen and started adding racemic baclofen on June 9. We have been off arbaclofen since June 23 and on our current dose of baclofen since June 16. Current medication...
Tuesday, July 2, 2013
National Fragile X Awareness Month
July marks the beginning of National Fragile X Awareness Month. Each year on my blog I've attempted to do something to raise awareness during the month on this blog. This year, I've realized that I haven't come up with anything special and part of that is because I've been raising awareness a lot the past few months from Advocacy Day and writing letters to members of congress to helping found the STX209stories website. It...
Monday, June 24, 2013
Closing this Chapter
We sent it all back today. Six boxes, three still unused. Two dosing diarys and a two page explanation of what we saw over the past two weeks including behavior charts. Fed Ex came and picked up the package. Ayden told me no as I handed the box he had watched me pack up to the delivery person. He then had a full blown meltdown after he left. All I could do was hold him and cry with him. Once he recovered...
Saturday, June 22, 2013
We're Done
Today I gave Ayden his last dose of STX209.I've held my head high though all this. I've done everything I can, extended every favor I had. And today, it feels like none of it matters. We will weather this storm.We will find something elese that works.I will continue to fight.But today, today I cry. I cry for the hope that we had with this medication. I cry for the look on Ayden's face as he tells me he doesn't want the new medication. I cry because I can't explain why so he could understand. I...
Monday, June 17, 2013
Titration Week 1
Day 9
I don't want to write about this.
I don't want to think about it.
Yet I feel I need to.
Full disclosure though: It's not as bad as I thought it would be.
It isn't good though either.
Ayden was on 20mg of the study drug, taken in two doses of 10mg each. On June 9 we began titration and he dropped to 10mg of the study drug taken in 5mg doses twice a day. At that time, we also added in 20mg of baclofen taken in 10mg doses twice per day.
Day 1 was really bad. We had our first major meltdown...
Thursday, June 13, 2013
Why This All Matters
There are those moments in life where it feels like a band aid has been ripped away and an open wound left exposed. Those moments make me stop and wonder how I couldn't have realized what was under that band aid in the first place. The ending of the STX209 trial was exactly like that for me in many ways.
I work tirelessly to be sure that my children have the best lives they can. For Ayden, that work is just...more....
Monday, June 10, 2013
An Open Letter Regarding STX209 to Dr. Severin Schwan, Roche Pharmaceuticals
For almost two weeks now I have been part of a group of women helping to share stories of others that have benefited from STX209 as Ayden has. This group of amazing, dedicated women has worked tirelessly to share each of these stories. Stories of how their lives were changed, how their child's life was made so much easier. We have shared to help bring these stories of hope to the eyes and ears of those who can help us the best. We have asked, begged, and pleaded for you to do the same. Together...
Sunday, June 9, 2013
The Good and Not-So-Good
I have tons to share, but today just want to do a brief update. We just returned home from a wedding that all three of the kids were in (for their aunt) and I didn't get to post a couple things I want to be sure get some attention.Friday, something big happened. REALLY BIG. New York Times BIG.http://www.nytimes.com/2013/06/07/business/an-experimental-drugs-bitter-end.html?pagewanted=all&_r=1&I was interviewed a few weeks ago by a reporter for the New York Times about the end of the arbaclofen (STX209) trial....
Sunday, June 2, 2013
Fragile X and Autism Families for STX209
Been working on something....I've been working with an amazing group of women, other fragile x parents. We're hoping it will be big. We need it to be big. You can help by reading our stories on Facebook. Liking them. SHARING them. Each person that shares one of our children's stories radiates those stories to their entire group of friends. Who in turn share. Which makes our prescence much bigger. So please, won't you help? Visit this facebook page: http://goo.gl/RAUGj(Did...
Sunday, May 26, 2013
Morning Musings
I was asked a question the other day that made me really think.. "Do you think the development we are seeing in Ayden is a result of arbaclofen or due to it just being time for him to have developmental leap?" My answer to this is a little of both. I think we started intervention at a time that was ideal for Ayden. The combination of proper therapy and teaching both at school and at home with the medication at a...
Thursday, May 23, 2013
The Saga Continues
We are currently in limbo phase with the STX 209 trial. We know it has ended, but haven't yet received either a kit to wean or a call from the clinic on how to do so. Not that I'm worried about either of these things. We have heard and were told when we were notified the trial has been terminated that May 31 would be the last day we could begin to wean from the medication, although we have enough to last through August. We have a few big things happening in the next few weeks which is when...
Tuesday, May 21, 2013
1st Grade IEP!
I'm sincerely blown away that we will have a first grader soon. Seems like just yesterday we were bringing Ayden home from the hospital!! We had our annual IEP yesterday, and this kid continues to blow me away. I won't bore you with the details, but just a few highlights.
1) Ayden will have increased time in general education (inclusion) next year. He will essentially have only about one hour per day of 1:1 teacher time in the ASD room. He will be...
Saturday, May 18, 2013
After-thoughts
It's been a few days now since the 'termination heard round the fx world', and while the unknown of where Ayden will stand once we start weaning him from arbaclofen is still haunting me I at least feel like I have a path, a purpose in all this. We still have not received our exact date to start weaning. I know we will hear soon, and am hoping we are able to push that date out to at the very earliest after my sister in laws wedding but hopefully we can push it to when school lets out. You may remember our titration...
Thursday, May 16, 2013
BE The Change
So much love and support has been pouring in all day from family, friends, even people I don't know. While this is circulating on Facebook, I want to get a copy here as well. I don't know what the future holds for Arbaclofen (STX 209), but I know that when this community, my X-Family, comes together we are a force to be reckoned with. I know we have done all we can for the many that are currently benefiting from this drug, and hopefully the many more that will. So...what can you do?1) Make some NOISE!...
STX 209 - An (almost final) Update
I've often heard fragile x described as having the sound of a vacuum in your head. Consider going through life daily with that sound. Attempting to speak. To walk into large rooms full of people. Imagine how difficult it would be and how easily you could become frustrated. Imagine then that there was something you could do to shut that noise off. That is how I look at arbaclofen - as an off switch for that constant noise in Ayden's head. Now we have to turn that switch back on. Devastated...
Wednesday, May 1, 2013
A Day at the Park: A Fragile X Awareness Day Event & Fundraiser
I'm very excited to announce the first Mid-Michigan Fragile X Awareness Day Event: A Day at the Park! Please mark your calendars for SUNDAY, JULY 21, 2013 at VALHALLA PARK in HOLT, MI. A Day at the Park is going to be an awareness and fundraising event. We plan on spreading the word about Fragile X around the community through a variety of events in the park that day - just in time for National Fragile X Awareness Day on July 22. The park itself has a beach for swimming as well as fishing areas on the lake...
Thursday, April 11, 2013
I Wish I was in Italy*
I feel like Fragile X has peeled off my rose colored glasses on the world. I long for the innocence I once had where I believed all children developed normally. You don't think about it much when you have children, really. Kids just learn, they are naturally curious and beautiful little sponges that soak up every little thing they hear and see. They want to learn. Crave that input for their tiny little...
Tuesday, April 2, 2013
Autism Insurance Coverage at Michigan State
On March 29th, 2012 three public acts were passed (Public Act 99, 100, & 101) affecting insurance coverage of autism in Michigan. These three acts established a mandate for insurance companies to provide insurance coverage for children with a medical diagnosis on the Autism Spectrum Disorder (Asperger, PDD-NOS, or Autism). It established a tiered system that covered autism diagnosis, pharmaceuticals, psychiatric, psychological, and therapeutic services (speech, occupational, applied behavior analysis, physical therapies;...
Monday, March 25, 2013
STX 209 - Our Journey So Far [Update 5]
I haven't done an official update in quite some time. We have been on open label now since January 18 (a little over two months). To say we're happy with his progress may be an understatement! We don't really notice a lot of the behavior changes being around him all the time, but when I look back through videos it's very noticeable so I wanted to share here.We first started seeing Ayden's speech emerge in September of 2012, he was a little over 5 at the time. If you watch him here, you can...