Tuesday, July 27, 2010

Learning About SB: What is in that? The Latex Question

From I want to learn about spina bifida


Learning About SB: What is in that? The Latex Question

Latex. Sometimes it seems like it is the centre of my universe. Everything we buy I turn over and look (most often in vain) for a component list and look for those words. Natural Rubber Latex (NRL). What is the big deal?

Children born with spina bifida are more likely to have a latex allergy. And it isn’t just a simple scratching allergy, but can be anaphylactic right away (throat swell up, can’t breathe, die – need an epi pen). So these children are under latex precautions. Pretty much that means that they have never had a reaction to latex, but that’s because they haven’t been exposed (enough). Like other allergies it may take many exposures before a reaction happens. While we are still under precaution it means that we don’t carry an epi-pen or medic alert bracelet, but we still keep away from it.

It was believed that 73% children with spina bifida have a latex allergy. At first it was because they were exposed to latex at such an early age with multiple operations. But since many hospitals go latex free, and Sick Kids in Toronto is one hospital, we’ve kept him from being exposed to latex through the hospital. So something about spina bifida makes them allergic to latex. I’ve tried to find research that says it is not related, that now that kids aren’t being exposed to latex at and after birth the rates of latex allergy went away. But there is no research that says that. So I’m pretty much outta luck there. It is very clear that spina bifida is a risk factor for developing a latex allergy.

If you remember I had my c-section latex-free to keep Nickolas from being exposed through my own surgery.

You’d think that it would be simple to keep away from latex. Not so much. It is everywhere. Really rubber is in so much stuff, to make it better, to make it stretchier or bouncier or more durable. So what do we look out for? There are lists available online. I like this one here. It is 4 pages long, things in the hospital and then things in the community. Pretty daunting when you are worried about everything else about spina bifida. This is just one more thing that is tossed on the pile, and you worry that it will topple everything over!

So what exactly has latex in it? First of all rubber gloves, balloons, condoms. OK we can stay away from those. Medical supplies are pretty clear about what contains latex. I’m not going to get into hospital and medical equipment with latex. But it gets a bit tricky when we look at things in the community. Tape, office supplies, balls, mats, gum, elastics, t-shirt logos, costumes, band aids, diapers, nipples, handle bars, mattresses, newsprint, lottery scratch tickets, soothers, toothbrushes, bungee cords, playgrounds, toys, water toys, bathing suits, goggles, and zipper storage bags. Are you dizzy yet? And that is just the quick list. There are a lot of alternatives as well. If you want to be very specific with latex allergies it can even go as far as being served food that was prepared with latex gloves, or being in a room with balloons or gloves as latex powder can become airborne.

There is also associated allergies with banana, avocado, chestnut, kiwi, pineapple, mango, passionfruit, strawberry, potato and pear.

Latex comes from the sap of rubber trees. The allergy comes from an immune reaction to proteins in the tree sap.

The allergic reaction is labelled as different types, from 1 (most severe) 4/5 (mild). Type 1 is the one associated with myelomeningocele (spina bifida). It can start off as itchy, watery eyes, sneezing, coughing and rash. But can also become life threatening with difficulty breathing and anaphylactic shock with a collapse of circulation system (pretty much your body decides to shut down).

Boy, isn’t this fun?! Natural rubber is the only thing that we are concerned with. Synthetic rubber, silicone, plastic, nitrile and vinyl are fine to use. Latex is required to be labelled on medical products. But for some reason no one sees the need to label community products. Even when a lot of the products I have looked at are latex free! It would be nice to know!!! For baby products Learning Curve, Kids II and Nuby are companies that I have contacted and have told me that their products are latex free, except for latex nipples.

There are still things that I have a bit of a heart-stop and think Oh God does that have latex in it? Usually around items in clothing and toys. This seems to be a fight that I will have to overcome, until the government decides to smarten up and be concerned about labelling products that have latex. (Do I sound bitter yet)


http://en.wikipedia.org/wiki/Latex_allergy - and yes I know I used Wikipedia (which is usually evil) but it served it’s purpose today.

Learning about SB: Beyond Walking

  From I want to learn about spina bifida

Learning about SB: Beyond Walking

Will he walk? That is always the question that people ask when they learn about Spina bifida. And that is one of my first questions as well. We are lucky and everyone seems very confident that yes, he will walk. But how do we picture walking? Walking down the street like you and I walk? Walking with a limp? Walking with crutches and braces? Walking with a walker? All of those are walking. And if he needs to use a wheelchair – I’m ok with that (it’s easy to say that now – I’ve heard it’s very hard on the parents, but not so much on the children). Walking is NOT the be-all and end-all of life.

 I found this picture that I think helps to show how walking can be affected by nerve damage. Nerves do not progress all the way down; some nerves go to the front of the leg, some to the back. Spinal nerves are what carry the messages to and from the brain and muscles. Thoracic nerves go to the chest, back and stomach, upper lumbar nerves (L1-L3) to the hips and thighs, lower lumbar nerves (L4-L5) to the knee and front of the lower leg and sacral nerves (S1-S3) to the ankles, feet, back of legs, buttocks, bladder and bowels.

Walking involves more than just nerves, there is mobility and sensation. Here is a common table that explains level of Spina bifida and walking:
This chart came from Understanding Spina Bifida booklet from Spina bifida team at Bloorview MacMillan Centre

What is needed for walking? There are a variety of different things that need to be all lined up for someone to walk. Balance, range of motion, control and power. This is (something that I am learning about as well, so I'm sorry if it's a little dry)
1. Balance, is that center of gravity of the spine, pelvis, hip, knee and foot.
2. Range of motion of the joints, how they move and ‘step’, and the hip is the most important part of walking.
3. Control is needed. I could go into all the muscles that are important for control of the hips, but what the information I have is at least a page long, and I find it hard to follow with talking about different names of muscles – so I’m not going into it – but what I have came from Hip Function Fact Sheet from Spina Bifida Association of America http://www.sbaa.org/.
4. Finally we look at power. This is more than power to control joints, but to actually push and pull muscles. Calf muscles and hip extensors are used, and are sent messages from the sacral level. Power to move may not move forward, but side to side to move forward –the shifting that you see to move forward. Whatever works.

But this all takes a lot of energy, and some things are more important than walking. I’ll even say it again. There are some things more important than walking.

The next time you take a step, just one. Stop and think about all of the things that your body is doing. The nerve impulses, how you flex a muscle and a joint. And how you do it without any effort at all. THIS is what everyone takes for granted.

We are not here yet, and we won't be thinking about walking for a while yet, we are still getting control of Nick's trunk and rolling before thinking about crawling and being upright and standing before even thinking about walking. But the question that everyone has (including us) when we talk about spina bifida is will he walk? Well it doesn't have a simple answer.

Picture http://www.improve-education.org/id52.html

Learning About SB: Getting Things Out - Part 2

Hmm guess where I got this from: I want to learn about spina bifida

Learning About SB: Getting Things Out - Part 2

Bladder and bowel problems. They kind of come together, makes sense, since the nerves that go to the bowels are the same level. Here is a picture of how the digestive system get their nerve supply. The nerves to the bowel, the small and large intestine, rectum and anus (internal and external sphincters and canal) are affected.
What does this mean specifically? First we need to review how the bowels work. The intestines are muscles that contract and relax so that the ummm waste products (i.e. poop) travels down to the rectum. Again here we talk about sphincters (those doors that open and close depending on the messages they get). These sphincters send and receive messages from the brain depending on what is outside their door. When the internal sphincter senses poop in the rectum it opens and the external sphincter controls when we (potty trained) poop.

I can try to be polite, but hey, we are talking poop here. I am a mom, poop is a very important part of my everyday world. Get over it.

So now that we have that over with, what about kids with spina bifida? The incontinence (no control over bladder/bowels) problem is not an issue for us at the moment – we get to wait a few years for that. With poor or little control of the sphincters, well, remember my door analogy. If the door just pops open sometimes, the room empties.

Nickolas is a baby and in diapers anyways. So we aren’t really worried about when he poops, it is if he poops. That brings us to the next part of how spina bifida affects the bowels. Nerve damage means that the brain and the body don`t communicate, the brain doesn`t realize that the rectum is full and the door doesn`t open when there is a `knock at the door’ (if you get what I mean).

Muscles are the last part of this picture. Muscles are what you use to push poop out, but with spina bifida also comes with weak stomach and pelvic muscles. So constipation is a problem. Poop just sits there, can`t move and becomes hard when water is reabsorbed by the body and then just gets harder to come out. An article I just read described constipation and spina bifida as increased colonic transit time. Like the Go Train is going to be late!

So what do you do to help these issues getting things out? The first step is fluid and diet. Prune was Nickolas’ second food, and luckily he likes it – because he gets it every day. Also increasing fibre. If that doesn’t work then you look at medications as well as massaging belly, bum to help things along.

I could actually go on and on about these issues. But I’m going to stop here. Once potty training is started there are a lot more toilet issues, but we aren’t there and so I’m not going any farther. I think little learning module has come very close to TMI (too much information). But at the same time, as an parent of a child going through this, there isn’t too much information.

Sorry I don`t have many pictures for this little learning post. You probably wouldn`t want any, and I did find pictures that show exactly what I was talking about.

The picture came from http://img136.imageshack.us/i/bigdigestivesystem12176.jpg/ and most of this information I got from http://www.mydr.com.au/babies-pregnancy/continence-in-spina-bifida-bladder-and-bowel and http://www.medscape.com/viewarticle/569470_7 and http://spinabifida.org/sb-info/bowel-continence

Learning About SB: Getting things out - part 1

Another one from I want to learn about spina bifida

Learning About SB: Getting things out - part 1

When you learn about Spina bifida from the doctors you are told that there are a couple of different issues you will be looking at because of the damage to the nerves; mobility and bladder/bowel. Depending on what doctors you are talking to, they will spin it 2 different ways. Your child will be in diapers forever, or this is manageable. Manageable means cathing and an assortment of different poop strategies.

The nerves that go to the bladder and bowels are at the sacral level of the spinal cord. A lesion or damage that is above this area means that the nerve supply to the bladder and bowels are usually affected.

The nerve damage to the bladder leads to something called a neurogenic bladder. But really, what does this mean? The nerves can affect the bladder, the sphincter (the door to the bladder) and pressure.

The neurogenic bladder can do 2 different things. One is that the bladder is ‘lazy’ (this is my term), the bladder is limp and cannot squeeze urine out – like an elastic band that is stretched and can’t tighten up any more. This is where Nickolas is. When I cath Nickolas I can get anywhere from 5mL to 100 mL of urine. Pretty big for one little kid. What we worry about is urine that stays in the bladder because it doesn’t empty. The other is that the bladder is spastic or ‘hyper’. Urine isn’t stored at all and the bladder, but it is always emptying.

Catheterizing (for those who don’t know, and are interested) means that a small flexible tube goes through the urethra and into the bladder. There is a hole at the end of the tube that allows the urine to drain from the bladder. This is one of many things that seem to bother the parents a lot more than the kids. We’ve been doing it since Nickolas was born and it doesn’t look like we are going to be stopping anytime soon (but I can still hope). Nickolas doesn’t care, half of the time he laughs, plays kicks – hopefully missing my hand that is holding the catheter, and hopefully missing the bowl of urine.

The sphincter is a muscle that is the door to the bladder, it can be too tight or too loose, when it is tight you have problems opening up the door, and when it is too loose the door is always opening unannounced.

Pressure is the last thing that affects how kids pee. (If the bladder is a room, the sphincter is the door, than pressure if the wind from the window). Low pressure means that the bladder doesn’t completely empty, and high pressure means that urine can be forced into other ‘rooms of the house’, specifically the ureters and the kidneys.

Pretty much with a neurogenic bladder we want to make sure that the bladder is healthy. We want it to be emptied regularly and not get any infections or damage the kidneys. Incontinence, not being able to control your bladder emptying, we will tackle in the future, but right now, with 2 kids in diapers I am not even close to considering an approach. But there is a combination of ways that we can deal with this.

The main concerns about this way to ‘get things out’ are infections and kidneys. A urologist is our very own pee doctor and helps to monitor how everything is doing.

I was originally going to outline neurogenic bladder and bowels at the same time; but I think it’s too much. So stay tuned for Getting Things Out – Part 2

Most of this information came from my Spina bifida resource manual from Bloorview Children's rehab as well as 
 from http://www.mydr.com.au/babies-pregnancy/continence-in-spina-bifida-bladder-and-bowel

Pictures came from www.apparelyzed.com/bladder-function.html and http://www.aqavic.org.au/sci_facts/neurogenic_bowel.html

Learning About SB: Spina Bifida is a Package Deal

Learning About SB: Spina Bifida is a Package Deal

Here is my module #2 in my spina bifida education month.

Spina Bifida is the birth defect that sets off a chain of other problems that make up the entire package. Spina bifida comes as a package deal. There are effects on the whole body. The spinal cord, the brain, the bladder and bowels, muscles and bones, and other medical problems.
I will talk about the bladder and bowel issues in another post; these issues develop because of nerve damage to the areas that go to the bladder and bowel. But the other most common ‘tag-alongs’ to Spina Bifida are problems in the brain, (chiari II malformation, hydrocephalus), as well as problems with the bones (feet, hips, spine).

So you aren’t looking at just the back-thing, there is a whole bunch of things that come with it. Luckily someone who has Spina bifida does not necessarily have all of those problems, and hopefully if they do, they don't all cause problems at once.

Nickolas has Chiari II malformation and hydrocephalus. Luckily his feet and hips are fine and he doesn’t have any orthopaedic problems. But the effects of Spina bifida can result in problems with joints, misshapen bones, hip problems and curving of the spine. If you are missing one of two (or more) of the building blocks the tower doesn’t necessarily stay straight.

In my last education post I discussed a bit about Spina bifida, but what about the other stuff?!

The spinal cord is only so long and when it comes out of the back, in the lesion, it pulls on the cord, which is attached to the brain, and the brain, specifically the cerebellum, is pulled down as well. This is called the Chiari II Malformation, it is the banana sign that is often noted on ultrasounds, along with the lemon sign (I’ve mentioned it before, but those radiologists must have had the munchies or something when they came up with the names of things.)

Considering the importance of the cerebellum (it is what makes you breathe among other things) – this freaks me out. But Chiari may be present and have no symptoms. The most common are problems are gagging easily as well as breathing problems or loss of upper body strength. There is a surgery (called a decompression) that can help if problems develop.

There are other types of Chiari malformation (type I – IV, but it is type II that is associated with Spina bifida). Interestingly Chiari malformation has been on recent TV shows this past season, specifically House and CSI.

Hydrocephalus occurs when the cerebral spinal fluid (CSF) cannot properly be absorbed by the body and starts to build up in the ventricles (pockets) of the brain, which makes them bigger. It is associated with Chiari because the brain tissue can block the normal flow of the spinal fluid. Spinal fluid surrounds the spinal cord and goes from the nerves and spinal cord to the brain and is then absorbed. But when the absorption of fluid is blocked it starts to enlarge the ventricles and put pressure on the brain. In babies the head is soft and so the head gets larger – that was how Nickolas’ hydrocephalus was discovered; his head grew 2.4 cm in 5 days! Once the skull fuses, kids and adults with hydrocephalus would get headaches (no kidding!) among a range of other symptoms. Even to the point of 'sunsetting' of the eyes because the pressure of the brain cause the eyes to look downwards.

Hydrocephalus is very common with Spina bifida. The most common ranges I've seen in research has been from 85-95% of people with Spina bifida also have hydrocephalus. It can develop inutero, or after the surgery, or really any time (but most common in the first year). In Nickolas’ case the hydrocephalus developed after his back was closed – before that - the system, think of it like a garden hose, had sprung a leak, so the pressure did not build up when it was blocked because there was a hole in the hose (the lesion). When the hole was closed (back closure surgery) the hose starts to build up pressure.
How painful does this picture look - can you imagine the pressure that would put on your head?! Where would the brain go when the insides start blowing up like that. It finds a way. But we really don't want to let it go that far. SHUNT HAPPENS.

But there is a treatment (not the perfect solution, but has worked well so far ***knock on wood**). To treat hydrocephalus a shunt is inserted in the brain (into the ventricles) that helps to take the extra fluid and ‘shunt’ or move it down into the abdomen where it can be absorbed by the body. Simple enough right? Yes as long as the shunt doesn’t get blocked or infected or just stops worked and so then needs a ‘revision’. Nick’s shunt is located above his right temple, in his hairline. (He was part of a study which helped to pick the right placement for the shunt by ultrasound). He also has a scar next to his belly button which is where the shunt ends.

Nickolas luckily did not have any problems with his feet or club feet, so I’m not going to go into this, other than mention that clubbed feet and other orthopaedic [bone] problems is very common with babies, children and adults with Spina bifida.

Hope you’ve learned something in this Spina bifida learning module. A lot of this information came from the MOMS study website that is being done in the States – investigating how intrauterine surgery affects the rates of needing a shunt or developing hydrocephalus. This information can be found here.

Learning About SB: The Repair

  Here is another post from Amanda's I want to learn about spina bifida

Learning About SB: The Repair

I have a lot of people asking me how they fixed his back, but I didn’t really know how to answer. Then I found some pictures.

When you are pregnant, you wonder about what will happen in those first few days after he is born. And the answer is major surgery. A way to fix his back, this surgery will fix his back, but will not fix the nerves. In fact that first surgery can actually damage the nerves – that is one of the risks. But really there isn’t a choice.

A baby that was born with spina bifida has part of their spinal cords outside of their body and that needs to be cared for and repaired. It is called a myelomeningecele repair (MMC repair for short). Nickolas had his first major surgery when he was less than 24 hours old, and this surgery lasted almost 6 hours. I didn’t really know how it was repaired other than they put the spinal cord back in and covered it with muscle and skin. Well I found a couple of good pictures and thought – huh – this is how it was repaired (you learn something every day). Even though I had an idea, it was helpful to see pictures.

I do not have a picture of Nickolas’ lesion, I never thought of it at the time and wasn’t able to visit anyways (the joys of H1N1). There are pictures you can view online, some are large, some are small. But really it only looks like that for the first 24 hours and then it is repaired.

Nickolas has quite a big scar. and one part of it got infected, so it didn't heal very well, he stayed on his belly for 6 weeks until it cleared. And that part now has an indent of scar tissue when it healed. I think his scar looks beautiful now. I’m amazed at the work of the doctors, and his plastic surgeon.

Learning About SB: The Beginning

Another post from Amanda's I want to learn about Spina Bifida

Learning About SB: The Beginning

There are a lot of questions when you find out about a prenatal diagnosis. There are the long range questions – will he walk, will he have friends, will he be happy, will he go to school? You want to know how this happened? Why this happened? I can’t really answers those, but I do know when.

28 days. That is how old the baby, the embryo, is when spina bifida happens. In the first 4 weeks, when the baby isn’t a baby, when it is an embryo smaller than anything you can imagine. THAT is the time things go wrong, when one tiny part of the tiny embryo does not fit together as neat as can be. A neural tube defect.
28 days, do we know why things went wrong? No. There are theories, folic acid, green tea, hot showers, genetics, bad luck, God’s plan and there may be a combination of many of these in the why’s.

Knowing when doesn't help anything. I could go into the whole folic acid thing - taking folic acid before you know you are pregnant. The importance of folic acid, but I was on folic acid and it still happened. But statistically yes, folic acid helps to decrease the chance of having a neural tube defect (i.e. spina bifida among other things).
I thought this was interesting to show when and how spina bifida occurs. and when I found the picture - I knew I had to post about it!

Learning about SB: A mile-o-what?

From Amanda Riddings I want to learn about spina bifida blog

Learning about SB: A mile-o-what?

This is my first 'Spina Bifida Education Module' to help educate friends and family about spina bifida. I hope that these 'modules' will be posted over the month of June in celebration of Spina Bifida month. But don't worry! I will continue to post about the kiddies as well!

A myelomeningecele (pronounced my-low-men-ning-guh-seal). This is typically what spina bifida refers to, and is the most common type of spina bifida (there are 3 different types – also a meningecele and occulta). A Myelomeningecele is the most damaging, and this is what Nickolas was born with. This long word is what was wrong with my baby boy. In the hospital they shortened it to a MMC. Nickolas had an MMC repair – a lot easier to write out a million times in nursing notes.

I do not have a picture or know what Nicikolas’ looked like (I couldn’t visit because I had H1N1 and it never occurred to me to ask someone to take a picture), but I’ve seen other childrens. I was told by the neurosurgeon that Nickolas’ was 3 cm in diameter, but his scar is rather large (S shaped) compared to other children’s that I’ve seen.

This picture shows that the bones of the spine have split and allowed a sac to come out. The sac contains spinal fluid, the spinal cord (nerves) and meninges (tissue that covers the cord) to stick out and be exposed. Surgery is done (in Nickolas’ case) within 24 hours to replace the sac and nerves in the back and cover it with skin (I was surprised but the skin and muscle keep it in place, no other bone was put to cover what is missing).

As you can imagine it is delicate and major surgery that these kids go through and recover (amazingly) within their first few days of life. Even after surgery there has been damage to the nerves that are not, and cannot be repaired. The amount of damage done and what is affected depends on what nerves were damaged and what nerves passed through. Typically the level of the lesion (the hole) can determine what function is affected, but children may function at a different level than their lesion.

And usually there is a chart that typically gives an idea of mobility future and need for assistance with walking that goes along with the picture.

Nickolas’ sac/lesion/level is S1 when they did the surgery. We are still waiting to see what level he will function at (or not – who needs labels to say what they can and cannot do).

So that is my first quick-start education module – hope you liked it.

The spinal picture and walking chart were taken from http://www.spinabifidamoms.com/english/about.html

The picture of the myelomeningocele came from http://health.allrefer.com/pictures-images/spina-bifida-degrees-of-severity.html

Spina Bifida Pamphlet

Check out Amanda's INCREDIBLE pamphlet that she created (with help from the SB&H of course)


Video on from I want to learn about Spina Bifida

Here is a post from Amanda Ridding's I want to learn about Spina Bifida blog

Excellent Video

Here is an excellent video of doctors who are participating in the MOMS study explaining spina bifida (myelomeningecele). The MOMS study stand for Management of Myelomeningocele Study and is in the US that is looking at the effects of prenatal surgery to repair the lesion. It has been going on for many years.

Pretty much at 25 weeks the mom (and baby) undergo surgery that would have been done on the baby within the first day or two to close the back. If you participate in the study you are randomly selected to either the postnatal surgery or the prenatal surgery group.

I found a video that is really excellent in explaining a myelomeningocele and everything that goes with it. If you are interested - please check it out!

This video explains how the postnatal repair is done - this is the surgery that is done on every baby that is not participating in the study (as well)

This video explains - and shows video - how the prenatal surgery is done. These pictures are amazing! It also reviews the risks and benefits of prenatal surgery

The Ridding Family

When I first started this blog, I wanted to to bring more attention to spina bifida and to some of the other families that are struggling with this disability as well.  Thanks to the power of the Internet (that's right folks, the internet can be an amazing thing) I have met another family that are also living with the challenges of Spina Bifida.  The next couple of posts are going to be taken directly from Amanda's website since I am so swamped. Amanda has done some spectacular educational posts on Spina Bifida and hydrocephalus that I wish were around when Jake was first diagnosed.  I have a hard time reading her posts because it brings back so many memories.  I also want to give her a hug each time I read them because I totally understand what she is going through

Enough about me -- Let me introduce you to Amanda Ridding and her lovely Family

From her profile on blogger:

I am a wife, mother, sister, daughter, friend, nurse, graduate and many other things. I enjoy and love my family; Kyle my spouse, and kiddies, Katheryn was born April 2008 and Nickolas was born November 2009. We are a happy and loving family who are journeying together with the diagnosis of spina bifida. Nickolas was born with spina bifida (S1) and hydrocephalus. We are sharing our stories and lives with others after I got Nickolas’ diagnosis when I was 22 weeks pregnant. . I have found that there are challenges and triumphs in my life. I have learned a lot from my children, they have shown me what faith, hope, love and joy truly means.

Ridding Family Blog
I Want to Learn about Spina Bifida

Ridding Family SWWR 2010

Nickolas (Adorable isn't he)