Spina Bifida Animation

This is an animation about how spina bifida is formed.
Amazing video.

http://www.youtube.com/watch?v=ouMi5z1vwbE

I hope the link works - it's a great youtube video!

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!
http://www.chop.edu/video/moms/management-myelomeningocele-study.html?item=1

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)
http://www.chop.edu/video/moms/management-myelomeningocele-study.html?item=4

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
http://www.chop.edu/video/moms/management-myelomeningocele-study.html?item=5

Pamphlet - SB

Learning About SB: Working – PT, OT, ST

When talking about the different therapies with spina bifida you use a lot of different letters, PT, OT, ST. Physical therapy, occupational therapy and speech therapy. These are the people that help make children work. These are just a couple of people who are in our healthcare team. We also have the neurosurgeon, paediatrician, developmental paediatrician, development worker, social work, urologist, family doctor and I’m sure we will add to this team as Nick gets older. Usually there is also an orthopaedic surgeon, but Nickolas luckily didn’t have any problems (I don’t want to say yet, so I’ll just leave it at that).

I am not going into everyone on the healthcare team, just the T’s, the therapists. So, we have PT, OT and ST, our own little T team.

Physical therapy works the big muscles. They help with the walking, they deal with mobility devices and they are the ones to make kids cry. That is what Nick’s PT always jokes about, that PT always makes kids cry. But that is how we know they are working. There seems to be a running joke between PT and OT. Who the kids like more.

Occupational therapy works in small muscles, the little things like holding a pencil and holding things, working on the hands. Occupational therapy deals with life skills and helps to work toward independence. Speech therapy works on, well, speech and language development. These kids are at risk because of everything that life has thrown at them so far. Between anaesthesia and operations at such an early age, let alone hydrocephalus and Chiari malformation.

Speech therapy is actually something we have Katheryn in right now. So even though Nickolas is talking up a storm, we still can’t escape ST.

An article that I found said that success or failure of PT depends on the ability of the therapist to teach and encourage the parents to help their child to become as independent as possible in daily life (Hewson, 1976). I didn’t realize how old this was, but I actually like this, at this age it isn’t about making a child do something. It is teaching the parent how to encourage their child with exercises and stretching. Physio involves building strength and muscle. It is creating the building blocks and then just making the castle bigger and bigger. We are building the foundation. Right now that is trunk control.

Using a yoga ball and Nickolas’ corner chair are 2 things that we are using to help with physio. We haven’t done anything with OT yet; I think once he gets older they will get more involved. And as for speech, he is right where he is supposed to be. And that is really a nice thing to be able to write.

This is going to be my last educational module. I think it is #9. Too bad I couldn’t get to 10, but maybe next year. I wrote them through the month of June to celebrate and educate about spina bifida month. I’ve learned a lot in writing them and researching them, and finding all the pictures that I love putting up.


I’m thinking that I’m going to move them to a different page, just to clear things up a bit. If anyone has any suggestions about other topics to cover, or something they were interested in. Please, please let me know and I’ll look into it. This has actually been pretty fun. I’m hoping to transform these into a PowerPoint presentation that I can show people/classes. I can work on my little circle of people to make spina bifida a household name, and hopefully if one person understands it a bit more, and is less afraid when they get the diagnosis, then I have succeeded in what I’ve wanted to do.


So I hope you enjoyed!

Hewson, J.E. (1976). Basic physiotherapy of spina bifida. Dev Med Child Neurol Suppl, 37, 117-118.

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)

Sources:
http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2700271/k.1779/Latex_Natural_Rubber_Allergy_in_Spina_Bifida.htm

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

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
http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2700279/k.91AF/Hip_Function_and_Ambulation.htm

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