The scoop on SDR (cross-post)

To reiterate from the last post, CP is not curable. Treatments help to optimize what Ben can do with the body he has as well as help to manage the spasticity (tightness) in his legs. The two main management treatments that we have done are botox injections and serial casting. Both work for a while, but are not long term. In Ben's case, we're lucky to get a month or two of effect. Then he goes and grows again and we're back with really tight muscles again.

Soon after Ben was diagnosed with CP (he was diagnosed a week after his first birthday), I read about a surgery called Selective Dorsal Rhizotomy ("SDR"). From what I read, I could already see that Ben might be a candidate for this surgery.
To understand this surgery, you need to first understand that Ben doesn't really have anything wrong with his muscles. Really what is wrong is that his brain doesn't send the right signals to his muscles.

Very basically, a neurosurgeon will selectively cut a number of sensory nerve fibres that enter Ben's spine from his legs. The surgeon will test the nerve rootlets to determine which ones cause the spasticity and only those will be cut. The surgery can take up to 8 hours.

After the surgery, the spasticity in Ben's legs will be gone. Hopefully he will be able to get his heels on the ground (currently he is very high up on his toes...basically as high up as a ballerina is) and he will be able to stretch his legs straight out without a bend in his knees.

However, because Ben has been dealing with very tight muscles since birth, his leg muscles have not developed properly (and neither has his joints). So after the surgery, he will be very weak and will not be able to do what he is able to do now. He will need to relearn how to roll and sit and stand and "walk".

The recovery is very intense. He will need to remain on his stomach for 2 days after the surgery. After that, he will be allowed to lay on his side. Eventually he will be able to be on his back again.

The surgery itself will occur at Montreal Children's Hospital. From what I am told, the surgery will be on a Wednesday or Thursday. Ben will have a number of pre-operative procedures earlier that week. He will remain at Montreal Children's Hospital for 5 days. After that, he will be transferred to Montreal Shriner's Hospital. This is where he will have 6 weeks of rehabilitation.

Now you're wondering what we can expect from this surgery. You're wondering (and likely hoping) that this will mean that Ben will be able to walk.

Well. That's difficult to say. We know that there will be improvements. Perhaps vast improvements. But it's hard to know for sure. Of course, independent walking would be wonderful. Beyond wonderful. But we're not sure if that is realistic.

My hopes for this surgery is that Ben will be very functional with forearm crutches. My hope is that this will be his PRIMARY mode of getting around. My hope is that he can walk independently indoors. But I'm not sure if that is likely out of doors. Regardless, Ben will not come home from Montreal able to do all these things. This will take months, if not years, of therapy and work on Ben's part.

I am in touch with a wonderful mom whose little girl, Nina, had this surgery just 6 months ago. Nina was very similarly affected to Ben. She now can take steps independently at home. To me that is amazing progress.
Remember though. Steps do not mean independent/functional walking. Ben will never walk like you or I. That is not the point of this surgery. The point of the surgery is to do everything possible to allow Ben to be as independent as possible.

To read the full details of SDR, click on the link below:

St. Louis Children's Hospital

The deal with Ben (cross-post)

(This is a cross-post from my new blog (a private blog open to my family and friends who want to follow our journey through SDR)).

(Photo by Megan McKinley Photography)

Ben has cerebral palsy, CP for short. CP is an umbrella term used to describe conditions that relate to brain injury that cause problems with movement and posture. CP can affect a person's ability to walk, talk, sit, eat and think. CP is caused by a brain injury shortly before, during or within 3 years of birth.

 

CP is more prevalent among children who were born prematurely. Ben (and Daniel) were born early at just 30 weeks gestation. That's 10 weeks early. Ben had more trouble as an infant than Daniel did. Both Ben and Daniel had brain bleeds that were found shortly after birth by doing a head ultrasound. Brain bleeds are classified from I to IV, I being least severe. Ben had a Grade II bleed whereas Daniel had a Grade I.

 

However, just because someone has a brain bleed, that does not mean that a person will absolutely develop Cerebral Palsy. A diagnosis of CP will not be given until the child shows delays in meeting the typical developmental milestones such as rolling, sitting, standing and walking.

 

The most important thing to remember about CP is that it affects every single person who has it differently. For some with CP, the condition is barely noticeable. For others, it can be so severe that the person relies entirely on others for help with mobility, eating and self-care. Ben is somewhere in the middle. In some ways, I would say that Ben's CP is mild as he can talk, eat, and use his hands. He is also smart as a whip. However, when it comes to walking, Ben's CP is more in the moderate range as he is not completely dependent on a wheelchair to get around but yet is unable to walk without help.

 

CP affects a person's ability to use their muscles and it does this in different ways. Therefore there are different types of CP including spastic, dyskinetic, ataxic, hypotonic, and mixed. These words all describe HOW CP affects the muscles. Ben has spastic CP. This means that the muscles affected have increased tone or tension.

 

Also, CP can affect different muscles for different people. Words used to describe which muscles are affected include: diplegia (both legs), hemiplegia (one side of the body), triplegia (both legs and one arm) and quadraplegia (both legs and both arms). For Ben, it's his legs that are primarily affected (his hamstrings and calves). Therefore he is a diplegic.

 

So, when we describe Ben's type of CP, we say that he has spastic diplegia (meaning tight muscles that affect the legs).

 

For Ben, having CP has meant that he cannot walk independently. He is able to walk with a walker and with quad canes. Although he is able to walk with these aids, Ben still tires very quickly and walking is very difficult. At home, he crawls to get around. And these days, Ben uses a wheelchair for mobility when we are outside the home.

 

It is important to remember these things about spastic CP:

 

• The brain injury that caused the CP cannot be cured or reversed. It is permanent.
• Treatment options involve managing the spasticity (or tightness) in his legs. To date, Ben uses braces (also called AFO's - ankle-foot orthotic) for walking. He has had botox injections in his muscles to alleviate the spasticity and he has had serial casting done on both ankles to help stretch his calf muscles. All of these treatment options are temporary. Botox wears off quickly (within 3 months) and serial casting is something that is done over and over, mainly because as Ben grows his muscles get tighter and tighter.
• There is also a lot of therapy out there to help Ben learn to use his body to its optimum. Ben gets physiotherapy twice each week for an hour. He has also seen occupational therapy (as needed) and speech therapy. Other therapies that we have done include hippotherapy (horse-back riding) and conductive eduation. All of these HELP Ben to move better, but will never "cure" him.

I think that pretty much explains it. Here are a few links with more information if you are interested in learning more:

 

PubMed Health

St. Louis Children's Hospital

 

I love to answer questions about Ben...so if you have any, please ask!

A new blogging adventure

I've started a new blogging adventure.  This blog is a public blog.  Anyone can read it and find it.  In fact, I really want people to find it.  With one exception, I really don't want anyone in my real life to find it.  It's a place where I like to share what it's like to have a child with a disability.  But if my real life people knew about this blog, I would feel like I couldn't be completely honest.

There are 3 people in my real life that know about this blog:  my husband and two real life friends who also have a child with CP.  These people "get it" so I'm OK with them reading it.

Ben is about to have major surgery (SDR).  People in my real life want to know what's going on.  They want to be able to follow our adventure.  So I decided to create a new blog.  A private blog where I can post more personal details and not worry about the whole wide world seeing it.  So I've invited my real life friends to join my new private blog.

I'm going to cross-post the posts on that blog to this blog (with maybe a few tiny edits).  So far I've done a few "information" posts on the new blog basically to explain what CP is (and how it affects Ben) and also what SDR is (and how we hope it will help Ben).

Basically, I wanted you (my followers) to know what's going on with us.  I'm going to be loading a few of my posts tonight so you don't miss a thing from this SDR-journey we're on.

CP and personality

Do you ever wonder how much your child's disability is affecting their personality?  'Cause I do.  All the time.

Ben is definitely my more-difficult child.  Life just seems so easy for Daniel and his personality seems to match that.  Whereas Ben struggles just to move around.  It's harder to get from room to room.  Harder to do puzzles and play games.  Harder even to eat supper.  So I worry.  I worry that this daily struggle is affecting his personality.  Changing him.  Making him cranky and difficult.

Or is that just his personality?  Would he be that way without CP?  Not all kids are easy-go-lucky.

But I hate that I even have to think this.  Wonder this.  Because then I'm not sure how to parent.  Not sure how to discipline.  I do try to be more understanding and mindful of how difficult things are for Ben. I try to make sure that he gets lots of sleep and rest.  But sometimes, he just goes off the deep end and I have to be the parent.  I can't let him get away with this behaviour.  And it kills me.

St. Louis Children's actually states the following "Parents often note that their children become much less irritable and more loving after selective dorsal rhizotomy. We attribute this to decreased mental distraction by tight muscles."

I can only hope.

(We are still waiting for our surgery date.  I spoke to the surgeon's administrative assistant last week and she said that we should get the date this week.)

(Photo taken by Megan McKinley Photography.)

On not being alone

I cringe to think where I'd be (emotionally) if I hadn't found this blogging world and this amazing, special needs, blogging community. 

You see...for some reason, the real world only seems to have normal people, normal couples, normal kids and normal families.  And for me in particular...normal twins.

But the special needs, blogging world?  Well, it has people with cerebral palsy, people with autism, people with down syndrome and spina bifida and on and on and on.  It has kids that need wheelchairs, and walkers, and crutches.  It has adults who need communication devices, guide dogs, and adapated vehicles.  It has families whose homes are filled with medical equipment.  And it has families whose calendars have multiple medical appointments week-in and week-out.

And even though, I know it's not really true that the real world only has normal families, it is certainly how it feels.  Like last week, I took the boys to their first introduction to kindergarten (an-hour long "session" in the classroom) and of course, Ben was the only one who arrived in a wheelchair.  And needed to be carried between tables. 

When I'm in the "blogging" world, I can talk about botox, and surgery, and appointments and it's "normal".  I don't get pity looks and comments like "I don't know how you do it".  In the "blogging" world, I can celebrate the tiniest bit of progress and know that the people "listening" will really "get it".  In the real world, I feel like I have to explain so much about what the progress really means that I usually don't even bother. 

In the "blogging" world, I can actually call up another mom (yes, Ellen - I'm talking about you here!) and get all sorts of fantastic information on what it's like when your child undergoes selective dorsal rhizotomy.  In the real world, people don't even know what cerebral palsy is, let alone what SDR is. 

And for some reason, most importantly (for me), in the "blogging" world, twins don't always do everything together.  Moms don't complain that they "can't keep up with their twins as they are always running in opposite directions".  Instead, there are twins that are both affected by special needs or twins where only one is and the parents don't know quite how to handle that.  There are twins that go to different schools and twins that don't really get to "play" together.

I guess what I'm trying to say here is that I would hate to imagine my life without this amazing community that I've found myself in.  Without it, I would feel alone and on the outside of "normal".  But with it?  I feel "normal".  My kids seem "normal".  And our life seems "normal".  Because in this community, special needs are the norm. 

How cool is that?



(I'm blogging as part of "CP Connection".  Click on the image above to see where it started and find other blogs that are participating.")

Still waiting (plus some random stuff)

We're still waiting for a surgery date.  They said they would contact us in December, but it feels like FOREVER since we were at the hospital in October and I JUST WANT THE DATE ALREADY!

It's frustrating waiting for this surgery to happen.  Ben hasn't had any spasticity intervention (i.e. botox or casting) since June and he is CRAZY tight.  We continue to work on getting his quads as strong as possible before surgery, but otherwise aren't seeing any real progress at this point.  He walks very well with his quad canes but it isn't functional as he's quite slow and his endurance is pretty much non-existent.

We're also trying to come up with some sort of visitation schedule...which is hard to do without an actual surgery date.  It's such a blessing that so many people want to come and visit and help us out during Ben's surgery and rehab.  It's wonderful.  I'm beginning to wonder if I may actually complain that we've had too many visitors! 

We are gearing up for Christmas here at our house.  We're hosting the office Christmas Party this year at our house so that just gives me even more excuses to decorate like mad.  The boys are super excited about Christmas and Santa and presents.  And pretty much ask me every day is Santa come tonight.  I'm working on an advent calendar for each of them so we can start counting down to Christmas.  Hopefully that will help them understand how many days are left before Santa comes.

I don't know about you guys, but we had major issues with the time change this year.  Daniel has always been our early riser but was getting up around 6am before the time change.  Well...after the time change, that became 5am and didn't change after THREE whole weeks.  So I started looking for solutions.  And found this...the Gro Clock.  It's AMAZING!  And totally worked.  Basically the parent sets the time that he/she wants the child to get up.  During the night, the screen is blue with a sleeping star on it.  When it's time to get up, the screen changes to a yellow sun.  At first we set it for 6am.  It started working the first night.  Now we have it set for 6:30 and neither kid will get out of bed before they see that bright, yellow sun.  It was expensive though...$60!  YIKES!  But totally worth it for more sleep each morning.

I don't think I ever really posted about Ben receiving his wheelchair.  Bad me.  Well.  We FINALLY got it at the end of October.  Yep.  It took over 6 months to get his wheelchair.  Crazy.  However, he LOVES it.  LOVES it.  And we love it.  He's independent in it.  He's at the right height (and can even reach all the elevator buttons now).  I can even walk BESIDE him and talk to him like a regular 4-year-old instead of being behind him pushing him in a stroller.  Yes.  People look at us more now.  But like his walker, people can't help but smile when they see him in it.  He's just so happy!  Plus, his front 2 wheels light up when he gets going fast.

Before

We're officially in the before.  As in "before Ben has a Selective Dorsal Rhizotomy". 

Ben had an all-day evaluation at the Shriner's Children's Hospital in Montreal last week to determine if he is a candidate for SDR.  Ben saw OT, PT, an orthopedic surgeon and the neurosurgeon...all with the goal of figuring out if and/or when Ben should have an SDR. 

(For the details on Selective Dorsal Rhizotomy, check out this great link from St. Louis Children's Hospital.)

First of all, Ben was an absolute trooper.  What a long day it must have seemed to him.  Everyone wanted to see all that he could do...and more.  And everyone wanted to touch and prod him...and get him to walk, just one more time.  This started at 8am and by 3pm when Dr. Farmer (the neurosurgeon) asked to seem him walk again, he just couldn't do it.  It was a full-on meltdown and so The Backyardigans finally came out.

But that was OK though...as PT had taken many videos of him walking earlier in the day.  With a walker, with quad canes, with shoes and AFO's and in bare feet.  Like I said, he was a real trooper.

And the unanimous opinion was that YES, Ben is an excellent candidate for SDR and should have one as soon as possible. 

I have been hoping that Ben would be a candidate for this surgery since probably the 1st week post-diagnosis...when I was still in that google-as-much-CP-stuff-as-I-can stage.  The main criteria for a patient to undergo SDR are (per St. Louis Children's Hosptial Website):

At least 2 years of age
Diagnosis of spastic diplegia, spastic quadriplegia or spastic hemiplegia
Some form of independent mobility; for example, crawling or walking with or without an assistive device
History of premature birth; if born at full term, child must have typical signs of spastic diplegia
No severe damage to the basal ganglia on MRI examination
Patients exhibit potential for improvement in functional skills after dorsal rhizotomy

And Ben meets all of these criteria.  Dr. Farmer prefers to perform SDR on children under the age of 5.  It's a balancing act between doing the surgery before major deformities occur and doing the surgery when the child can excel at rehab. 

Check out Ben's before video...walking barefoot with quad canes.  I am still amazed that he can do this in his barefeet.




So...we are waiting for the phone call to hear the actual date that Ben will have his surgery.  We asked to have the surgery as early as possible in January...and that didn't seem to be a problem.  Hopefullly we will get the call in early December.

We met with the social worker while there as well to discuss how our family with be able to handle Ben being in Montreal for 8 weeks this winter.  Yep, 8 weeks.  That's what is stressing me out more than anything else at this point.  Luckily, I don't work any sort of real job.  I take on contract work when I'm able to...so I just won't take on any more work.  Also, my husband basically works for himself so he's also able to take off some extra time.  And we also have a great nanny that will be able to care for Daniel while I'm away in Montreal with Ben. 

There were a couple of highlights from our visit to Montreal.  First, when describing Ben's medical history to a doctor, he interrupted to ask "if I was a nurse or in the medical field".  Totally made my day...and impressed my husband too.  I've been bragging about this ever since!

But the super-dooper big deal?  We met a 16-year-old girl who had had an SDR at 5 years old from the same doctor.  She was back for a follow up.  I saw her earlier in the day.  She was walking completely independently with her mom.  I noticed a slight limp and immediately knew that she had CP....but totally thought that she had a very mild case.  It turns out that at age 5, she was very similar to Ben...walked with a walker and way up high on her toes.  She now walks completely independently!  I cried while talking to her and her mom.  She says that she does tire more easily than her friends and can only tolerate 2-3 hours at the mall...how amazing is that!

I did try to get some idea of what Dr. Farmer expects Ben's results to be.  Of course, it is hard to say exactly.  At this point, Ben can walk with a walker and quad canes, but neither of these are at a functional level.  He tires extremely quickly and usually ends up in his stroller (well, now his wheelchair...since it finally arrived!).  Ben was a Level 2 on the GMFCS until he turned 4.  Now that he's over 4 and can't walk without an assistive device, he has moved up to a Level 3.  I don't think that independent walking with no assistive device is the goal for Ben (although I think it is in the realm of possibility), but I do think that he should at the very least be very functional with loftstrands (otherwise known as forearm crutches).  And I would be THRILLED with that result.

The way things are going at the moment Ben will be in a wheelchair.  Able to transition well and be fairly independent, but in a wheelchair.  The thought of him being able to walk (albeit with help) is absolutely thrilling.

Dr. Farmer also talked to us about the long-term results.  75% if his patients require no further surgery after the SDR.  That statistic amazed me as I was certain that Ben would need additional orthopedic surgery(ies) after an SDR.  Turns out, this is not at all certain at this point. 

I'm also excited to be (hopefully) done with botox and serial casting.  Yes, these are great tools for delaying surgery, but I will be thrilled to leave them behind.  Over 60% of Dr. Farmer's SDR patients don't even require botox after surgery. 

I think I've managed to mostly recap our day in Montreal.  I'm sure I'll think of more details...and I'll try to post those too as I think of them.

And now the wait begins...