Spina Bifida and Hydrocephalus Awareness: Week 4

It is the final week of awareness. I'll admit there were some days that I couldn't think I'd come up with 30 different things to talk about. But after a while it just flowed.

Spina Bifida and Hydrocephalus Awareness: Day 24

Social relationships are also important within our big family of spina bifida moms.
Just as it is important to have someone to talk to and be just a regular mom, it is also important to be able to talk to someone who just gets it.

There are a number of outlets for this. I was lucky that there was a parent-baby group for the first couple of years when Nick was younger (until they cancelled it) to actually get together in real-life. Social media has replaced a lot of that personal interaction, but it still has a group of people who just get it.

Baby Center has a group Spina Bifida Kids, there are a bunch of facebook groups (including Living with Spina Bifida and Take That! Spina Bifida) and of course my own group Our Lives, with spina bifida for family, parents, children and adults with spina bifida who live in Ontario. And I can’t forget all of the blogs that are out there (including my own).

During the first couple of years after D-Day I scoured these blogs and groups and tried to find what life would hold for us. Until we just started living our own. Now I use these groups because somewhere out there someone has the same thought as me, or are thinking of the same surgery, have the same concern, or just want to vent. It is for those questions that you want to make sure you have all the information before you get the doctors opinion. As well it gives me the opportunity to give my own experiences to others.

Spina Bifida and Hydrocephalus Awareness: Day 25

I talked about Hydrocephalus and a shunt waaay back at the beginning of the month. But what is a Shunt?

If hydrocephalus is too much cerebral spinal fluid in the brain, then is there a way to take that fluid and put it in part of the body that can absorb it?

The VP shunt has been used to treat hydrocephalus since 1949, and the valve in the shunt was designed by a father (John Holter) of a child with spina bifida and hydrocephalus who just needed to DO SOMETHING, and thought that he could. And he did, creating the Spitz-Holter valve, a design that is still used today. This father continued to manufacture the shunts by hand, supplying over 500 a year.

 

 The shunt is 2 catheters and a valve. One catheter is inserted into the brain (into the ventricles) to take the fluid out, then through the valve (that is located against the outside of the skull) and takes the fluid through the other catheter, down the body, (under the skin) into the peritoneal space in the belly.

There are times the shunt stops working (called a shunt malfunction) for various reasons. This is an emergency as the fluid that is normally being drained is now building up in the brain. If this happens then it needs a shunt revision.

Symptoms that we are always on the lookout for a shunt malfunction includes

·         Headaches
·         Vomiting
·         Excessive sleepiness, can’t wake up or stay awake
·         Irritability
·         Vision problems
·         Changes in eyes, including crossed eyes, uncontrolled eye movements, sunsetting of eyes
·         Seizures
·         Personality changes

The shunt is not a cure for hydrocephalus, just an ongoing treatment.

 

Spina Bifida and Hydrocephalus Awareness: Day 26

Today is Nick’s last day of school. So I’ll talk about learning and that spina bifida and hydrocephalus are associated with learning disabilities.

 

Just because there is an association doesn’t mean it will happen, but being aware of different ways that our kids might learn can help to make sure that Nick succeeds. Anticipating.

I have a whole book all about this (thanks to SB&H). So there is a whole range of different things and areas that Nick may or may not need help with over the next years.

Information processing is the area that kids with spina bifida and/or hydrocephalus may have problems with. Numbers and symbols, visual-spatial processing, making connections and organizational skills are all identified as areas that may be difficult. Kids with spina bifida seem to have a cluster of strengths and weaknesses identified as ‘non-verbal learning disorder’ (NLD).

 

Knowing that these are areas that may cause some frustration and trying to problem solve how to help Nick learn. And more importantly identifying strengths and working on these.

 

We are just at the very, very beginning of our school-learning adventure and I’ll probably know a lot more over the next years.

 

 Spina Bifida and Hydrocephalus Awareness: Day 27

We had Nick’s neurosurgeon appointment this week. To review our yearly brain and spine MRI and to look for or rule out tethered cord.

Tethered cord is the next battle to watch out for. Usually is will occur around the age of 5-10. The spinal cord usually floats free in the spinal column, protected by all of the vertebrae bones in the back.

 But with spina bifida, the spinal cord is held in place by the scar tissue that is created with the original myelomeningocele repair. So as the child grows and gets taller the spinal cord is held in place (tethered) by the scar tissue. This causes it to be stretched and damaged or have limited blood supply to the cord.

There are a number of symptoms for us to watch out for. They aren’t necessarily obvious, but sneaky signs that you might not notice from day to day. These include a change or decrease in sensory, muscle weakness, pain or a change in bladder and/or bowel function.

There is surgery to untether the cord. Surgically loosening it from the scar tissue. This won’t improve any function that has been lost, but it will prevent further loss of function. But doing surgery to untether from scar tissue will actually create more scar tissue. Then that scar tissue will tether so another surgery will create more scar tissue and it is a cycle.

So it is a fine line between maintaining function and preventing surgery and scar tissue.

 

 

We got the all clear by our neurosurgeon this week. But it is still on our radar.

Spina Bifida and Hydrocephalus Awareness: Day 28

It is in one month that Nick is going to have surgery. It is bowel surgery, because while I’ve talked about a lot of the issues regarding spina bifida this month, I didn’t really touch on the bladder or bowels. The nerves to the bladder and bowels are damaged.

The bowels don’t really want to work. So we have a lot of constipation and continence issues. We have been treating this for the past 4 ½ years and tried all kinds of options. The surgery option have been reached after a lot of trial and error and consideration. It will have a profound impact on Nick’s daily life and independence.

 The surgery is called the MACE which stands for Malone antegrade colonic enema. It allows a catheter to go into the belly button, through a one-way passage (stoma) created in the appendix (which is attached to the colon) and allows enema solution to be given directly into the top of the colon. When the catheter is removed the belly button looks like a deep belly button. After it is healed, it doesn’t need anything to cover it.

This way of giving an enema (as opposed to the traditional way) is more effective in preventing constipating and improving continence as the colon will be empty and prevent accidents through the day. It also allows Nickolas to gaining independence to be able to do this himself.

 We are 1 month away, I’m nervous about what it will be like for Nick having surgery, anxious for the recovery to be started and then finished, but know that this will go a long way in Nick’s quality of life.

 

Spina Bifida and Hydrocephalus Awareness: Day 29

Latex allergy is one of those funny things with spina bifida. There is something about having spina bifida that makes people prone to having a latex allergy.

Historically they thought it was because of the early exposure to latex through surgery, but even after ensuring latex precautions immediately (I insisted on latex free from delivery) severe latex allergies develop. So we treat Nick as if he has a latex allergy.

Natural rubber latex (not the fake stuff) can cause severe anaphylactic allergic reactions at some point of exposure. The more exposure, the more likely to develop the reaction. Natural rubber latex is in a bunch of stuff, including many of the ‘all natural’ products. It in a surprisingly number of regular use items.

 

 

Our biggest worry and no-no is latex balloons and latex gloves. These are made by pouring latex into a fine coat to make the stretchy, rubbery surface. When balloons are popped or gloves are removed it releases latex into the air.

As well anything that goes into the mouth (i.e. dental products, pacifiers, nipples) or remains on the skin (i.e. bandaids) or that is obviously rubber (i.e. rubber bands) are not in the house.

Spina Bifida and Hydrocephalus Awareness: Day 30

I thought I would end my month of awareness with a PSA thanks to a fellow SB Mommy Joanna.

And that is it.
I hope over the month that I have helped to increase awareness and helped you to learn something you might not have know.
And at the end of the day, even with all of the medical stuff and concerns, this is what spina bifida looks like.

Not because he was born with spina bifida or in spite of being born with spina bifida. But because he is Nickolas, a little 4 1/2 year old boy who LOVES AND LAUGHS.

 

Spina Bifida and Hydrocephalus Awareness: Week 3

This is the 3rd week of awareness. I didn't realize at the start just how difficult it would be to come up with 30 individual topics. But I still came up with stuff to talk about every day (and I combined 2 days because I was going to talk about the healthcare centres in one day, and doctors on the other day).

Spina Bifida and Hydrocephalus Awareness: Day 17

Siblings. Spina bifida has an impact on your family, both your life and your children’s. There is an impact on any family when a new child is born.

 We were told to consider the impact having a brother with spina bifida would have on Katheryn’s life. And when I was pregnant that was one of the hardest things. Katheryn was still a baby (there is only 19 months between them) and I worried SO much that I was taking away from her.

Now I can laugh at myself. There was no taking away from her. There was adding… multiplying! Nickolas has had a profound impact on Katheryn’s life. Not only are they always laughing and giggling away (when they aren’t yelling and hitting and teasing each other), but I can see how great they are for each other.
 

  
And if you want to see how sibling life is like in our house, this video from last year is priceless!

 

Katheryn is very in-tuned to the needs of people around her. Whether it is someone needing help on the playground, waiting her turn, carrying canes and crutches and backpacks, helping someone who fell down or getting help from an adult... Katheryn helps Nick, sometimes too much (like pushing the wheelchair when Nick is supposed to be moving himself), but doesn’t complain and likes helping.

 

                                                                                                                        

She is getting older and understanding more what spina bifida is (and very excited for our walk on Saturday). It is a balance of everything in life, that our world does not revolve about spina bifida, and just because this is what Nick was born with doesn’t mean he is any more or less special than Katheryn. So spina bifida and hydrocephalus awareness today is all about Katheryn!

 

Spina Bifida and Hydrocephalus Awareness: Day 18 and 19
We have been lucky to have reasonable access to a number of different healthcare centres and physicians that gives Nickolas all of the care he needs. I thought I’d combine the 2 days and talk about the hospital and doctors who are involved after a spina bifida diagnosis.

 We started off with Mount Saini, and their genetics clinic and their pregnancy clinic. It was the genetics doctor who was the one who organized everything for us in those first couple of days, to give us all of the information to make an informed decision. At the pregnancy clinic I was followed in combination with my own OB for all of my prenatal care for us and got us Nick was transferred out as soon as he was born though.

Then came Sick Kids. A world class hospital. Nick sees his neurosurgeon, Dr Rutka, through Sick Kids. For those first 2 weeks that was where he got all of his care, including the initial follow up with urology and plastics (for his scar). We still see neurosurgery every year for a check up and MRI.

Next was Holland Bloorview Kids Rehabilitation Hospital, we started there at 2 months old. This is one place to see everyone in clinic days. These days include Dr Church our developmental pediatrician who runs the clinic. We love her! We also see urology, orthopedics, psychology, as well as nursing, physiotherapy, occupational therapy and social work. These clinic visits are now yearly and include bladder x-rays and ultrasounds while we are there. We’ve also seen ophthalmology at Bloorview as well. We were seeing orthodics for the first 2 years as Bloorview.

At 1 year we got picked up by Grandview Children’s Centre in Oshawa (there was a yearlong wait list). There is a developmental pediatrician, as well as the therapist that I’ve talked about Day 12. We’ve started to go to Grandview for orthodics last year as it significantly cut down on our travel times and we found the care comparable.

To round out the picture Nick also has a family doctor (who we hardly see) and a general pediatrician, Dr Montgomery who keeps us on track and we see every 6 months. And we have recently started going to a kids dentistry clinic as we have found Nick’s teeth have developed a significant  number of cavities.

So if you are keeping track, that is 4 healthcare centres (and 2 additional individual clinics) and 13 doctors and all kinds of therapists. It may seem like a lot, but really it makes about one really busy month once a year.

Spina Bifida and Hydrocephalus Awareness: Day 20
When talking about awareness there are many different colours that signify to people that you care about something. And I thought that today being the opening ceremonies for world pride. Talking about colours would be fitting.

 Spina Bifida and Hydrocephalus awareness is traditionally yellow, and in some places teal.

So when you see me and wonder why the yellow nail polish and yellow socks, or the yellow ribbons on my car or front door. Yellow is the awareness colour for spina bifida
 

Spina Bifida and Hydrocephalus Awareness: Day 21

Awareness is putting yourself out there. So that is what we did today. We participated in our 5^th annual Spirit Wheel Walk Run for the Spina Bifida and Hydrocephalus Association. This event is organized every year through the month of June by different families in Ontario. That means that instead of one big event that not everyone can make it to, there are dozens of smaller events that are family friendly, personal and everyone who can make it attends.

Our walk this year we met a number of people who had questions and I had some pamphlets all ready. We also met another family who just happen to be at the park and their daughter also had spina bifida. And for our walk this year we had Nickolas, a friend from work and her husband who were all born with spina bifida.

We spread awareness in Oshawa yesterday, a couple of people at a time. And of course everyone who has followed these posts here on facebook!
 

Spina Bifida and Hydrocephalus Awareness: Day 22

Today is our anniversary (15 years) so I thought I would talk about relationships. The parental relationship… I am years away from thinking about Nick’s romantic relationships.

There is research out there that says that when you have a child with a disability that your relationship has a higher chance of ending in divorce. There is also research out there saying that when you have a child with a disability you have higher rates of depression. It’s a little bit scary to think that just having and loving a child with a disability has shown to have negative effects like this.
 

Having that knowledge is half the battle. Taking time for yourselves and recognizing that this time is important and enhancing the parent-child relationship as well. There are so many decisions that need to be made, and two parents to make the decisions right from D-Day. And that relationship and decision making (at least from my experience) helps when things get overwhelming.
 

Spina Bifida and Hydrocephalus Awareness: Day 23
Relationships in general are important. Social relationships and social groups.

When Nickolas was a baby I joined a mom and baby group through Durham Public Health, and it was one of the best things I did. Because Nick was still a little boy first.

It was a time to meet other moms and watch out children play together, talk about mommy things, make baby food, do stroller-fit, aqua-fit and baby salsa, and kinds of other things for new moms and babies to do together.

During that first year this social group was a life saver. After my maternity leave finished our group drifted apart with the idea that we would always connect again. Unfortunately we lost a very important member of our group last year. But the help that being just a mom of just a baby was invaluable.

One more week of awareness to go. I hope that it has brought more awareness and helpful information this June

Spina Bifida and Hydrocephalus Awareness: Week 2

To continue with the week I was looking for more interesting topics, and of course those with pictures as well.
I didn't start off with a massive organized plan where everything would flow together and it would provide you with a progressive picture of what spina bifida looks like. I knew I wanted to have something new every day, and a lot of the time I just came up with the topic that day or the day before.

Day 10 came from a friend at work who asked if I had seen this guy on Nitro (that does bike stunts and stuff). That of course gave me a great idea for a topic that day.

Spina Bifida and Hydrocephalus Awareness: Day 10
 Extreme sports. Those of us in the spina bifida community all know Aaron Fotheringham and what he does on his wheelchair.

 

 There are even some very brave mothers who have one of these wheelchairs (and helmets) for their kids. I'm not this brave yet, but it's nice to know that if Nick wants to start sending his chair down ramps to do double backflips, he can. Or at least keep trying, keep falling and keep getting back up.

 There are so many videos out there. These are some of my favorites (check out at least 1)

https://www.youtube.com/watch?v=jCgUOFHXBOw
https://www.youtube.com/watch?v=AUUVfPy0UgI
https://www.youtube.com/watch?v=z43PXkvVC5c

 And there are a ton of pictures too

http://www.aaronfotheringham.com has a ton of stuff on it too!

 After posting this, I was showing Nick videos of some of the stunts. He was really impressed, but I kept showing him videos where Aaron wiped out, and he got bored before we got to the one that he made the jump.

Spina Bifida and Hydrocephalus Awareness: Day 11

 Every child born with spina bifida and hydrocephalus have scars. There is no choice, no alternative, no non-invasive, non-scarring treatment.

 

A scar is a sign of strength. It is a permanent mark for everyone to see that shows that you and your body fought, overcame and healed. Even if the scar was created when you were less than 24 hours old. And involved major surgery.

 Nick has 3 scars, the large scar on his back, the semi-circle scar on his temple and the small scar on his belly. The first is from his myelomeningocele repair, where the created a skin flap to help to cover the 3cm, oval lesion (hole) that was on his back. Plastic surgeon and the Neurosurgeon were both involved in that surgery, and it is a beautiful scar. It is large than other ones I’ve seen and looks like a ‘N’ that starts at his hip. The first line of the ‘N’ got infected and looks different from the other parts.
 

Nick had a big dressing on his back, with home care involvement for 6 weeks. But other than the initial infection it healed beautifully. The other 2 scars are from his shunt. The one above his temple is where the shunt is placed, and the one on his belly is where the shunt tubing ends. The head one is covered by his hair usually (though it did get A LOT of looks when he was a baby), and the belly one is coarse. I mean that you can see the suture needles holes, and it is right front-and-centre belly, it is about 3cm in length.
 With one more surgery on the horizon, I’m not sure if we will be adding another scar to Nickolas. But all of his scars mean strength. They are beautiful; they are part of who he is.

 

 

Spina Bifida and Hydrocephalus Awareness: Day 12
Spina bifida involves a number of different therapies and a team of therapists. We have a physiotherapist (PT), occupational therapist (OT) and speech therapist (ST). Nickolas has needed help from all of these so far, and has done multiple therapy block (8-12 weeks of one hour every week, followed by 8-12 weeks without therapy).

We have also sought out other therapies as well, free opportunities, private physiotherapy and conductive education (which I will discuss Day 13). Nickolas spent years HATING therapy. He would cry and scream and not want to work and do anything, and I would spend a lot of those sessions making him continue to work even with his crying and screaming. He did work, he just didn’t like it.

About 2 years something changed and while he might not LOVE therapy, he doesn’t hate it either.

Physiotherapy involves working with the large muscles to move. Walking, standing, kicking, going up and down stairs, moving are all goes that we have. Doing the big things. And a lot of core strength, because with the core will come everything else.

 

Occupational therapy involves working with the finer motor skills with activities of daily living. This includes feeding (which we haven’t had any problems with) but using your hands and fingers. You might  not think that spina bifida, that effects lower legs would also effect that hands, but it does. It has to do with the tone of the muscles. So it took therapy to strengthen Nick’s hands and fingers. We didn’t use OT as much when Nick was little, but now that he is in school, they are the go-to people to help him within the school. And when we look at making the house more accessible, they are also on our call-list.

 

The therapists together help with the walker, what will work for him. Allow Nick to move around, OT helps with the wheelchair and other seating issues if we need it.

 

But therapy is more than just a bunch of therapists and exercises to do. It is looking at everything we do during the day and try to figure out how to make it into therapy. Some days it feels like all you do it therapy, and other days it feels like you don’t do enough. But Nick keeps working and keeps moving towards maximizing his abilities every day

Spina Bifida and Hydrocephalus Awareness: Day 13

Having a child with special needs means always looking for create ways to maximize your child’s potential, to push that extra bit… because you know that they CAN. And acting as your child’s advocate.
Having a child who hates therapy made it very hard to help Nick to realize that we were asking him to try to do something that he can do. I heard about something called Conductive Education and wanted to try it.

 

 March of Dimes in Toronto offers Conductive Education. I love it! And Nick really enjoys it, and get SO MUCH out of it. What they do is use a holistic perspective to look at how to help Nickolas identify what he can do and how he can do it, all with an educational twist. And lots of songs.

 

 

There is no “he can’t do that” it is about “lets see how he can make this happen”, or “lets see how his body identified this feeling”. And always challenging. Every day involved working through a story or a theme, and then taking that theme and applying it to work.

 

http://www.marchofdimes.ca/EN/programs/CE/Pages/ConductiveEducation.aspx

Spina Bifida and Hydrocephalus Awareness: Day 14

Nerve damage, I have mentioned that the myelomeningocele lesion causes nerve damage. But what does that actually mean? What do nerves really do?
  

Well, they do all kinds of things. They tell your brain what you are feeling, and lets your brain tell your muscles what to do. With spina bifida, because the damage occurred during development some nerves work really well, some don’t work that well, and some don’t work at all. It isn’t like a spinal cord injury where you can point to a spot and say… from that point down. The vertebrae in the spine are associated with specific nerves that go to specific parts of the body. The vertebrae, from the head down are: Cervical C1-8, Thoracic T1-12, Lumbar L1-5, Sacral S1-5.

 

You can have a stronger and a weaker side, you can have some feeling in a part you don’t have muscle control over. Dermatome is the area of sensation, and the nerves supply from the front of the leg, to the bottom of the foot and up the back of the leg. Nickolas has sensation around S1; so he can feel down both front of his legs, decreased at the bottom of his foot and up his calf, and nothing the back of his thigh.

Myotome is the muscles that are controlled by the nerves. Different groups of muscles get information from multiple nerves. But when therapists are looking at function, it isn’t just if a specific muscle can move, but can it move against gravity or against a force. There is still some debate regarding what muscles Nick is able to use. Most likely somewhere in the L4 range.

 

You learn very early on what you letter and number combination is, and it takes some time to realize that it doesn’t really matter.

Spina Bifida and Hydrocephalus Awareness: Day 15

When you get the spina bifida diagnosis and meet with all of the doctors, there are lots of questions about walking. And they give you this chart, with the level of spina bifida and what your child will be estimated to use to be able to walk, assisted or unassisted.

I remember studying this chart and looking at where the dreaded wheelchair comes in. The wheelchair is no longer dreaded, and Nick is doing great with his walker and canes for the day. This chart is used very commonly when the baby is young or not born yet, it is a prognosis. It is not written in stone, and by the time your child reaches the ages to need different walking aids you spend more time looking at him (or her) that you do studying a chart. But for new parents who are thinking of what the future holds, this chart gives a tentative prognosis.

 

 

Spina Bifida and Hydrocephalus Awareness: Day 16

Folic Acid. I’m going to talk about folic acid because it is important, it is a vitamin that can help to decrease the chance of a neural tube defect (including spina bifida).

It is recommended for every woman to be taking at least 0.4-1 mg folic acid supplement for at least 2-3 months before getting pregnant, and to continue through the pregnancy. Any woman who is high risk (including a family member who was born with spina bifida) should take between 4-5 mg folic acid at least 3 months prior to pregnancy and through the pregnancy.

 

Folic Acid is a B vitamin (B9). Found in leafy green vegetables, fruits, enriched breads and cereals as well as dried beans, peas and nuts. Folic acid fortified flour and grains has been introduced in Canada. Prenatal supplementation and diet fortification have contributed to the current incidence of spina bifida 1 in 1300.

 

Folic acid is a tricky topic for us SB moms, many of us (myself included) were taking the recommended dose (of someone not high risk) prior to getting pregnant. And yet our children were still born with spina bifida. Folic acid, helps to reduce the risk … it doesn’t 100% prevent. So playing a blame game, like asking “why didn’t you take folic acid” is not helpful. If we were taking folic acid then it’s like we should have known to take the mega dose, and if you weren’t taking folic acid then you feel that it is your fault. It isn’t. Period.

Folic acid is great in that it has been identified as decreasing the incidence of spina bifida, but not completely preventing it. Because spina bifida and folic acid are linked the spina bifida associations run ads to promote folic acid awareness. It is kind of a kick in the face for us SB moms, but is important to educate the general public

http://www.riddingfamily.blogspot.ca/search/label/folic%20acid%20awareness

 

So that was week 2!