Unfortunately, I don't think we always portray a true and accurate picture of what having spina bifida is really like. Anna is on the extreme end of the spectrum. I hate to use the term lucky because I don't want to imply that others are unlucky.
Most kids with Anna's type of SB are not as mobile as she is. She loses her balance easily. She tires easily. She trips easily. But she walks (and runs) on her own. She has never had to use a walker or have leg braces. This is not the norm.
Anna's shunt had to be revised a week after her first surgery to place the shunt. She has not had any further shunt related issues. There are many kids her age with SB who have already undergone multiple shunt revision surgeries. Anna has experienced one UTI after being taken off of her antibiotics. No one wants their kid to be on a daily dose of "just in case" medication but you also don't want to run the risk of urinary tract infections (UTIs) which could lead to kidney infections. And I don't think I need to clarify that kidney infections are not a good thing.
Aside from the surprise discovery of a double hernia when she was 17 months old, Anna has been plugging along just like her sisters. Just like most kids her age. It is easy to forget that she has spina bifida. There are some days that I do make myself forgot. I stop thinking about what will happen when she's in kindergarten. First grade. Middle school. High school.
The majority of kids with Anna's type of SB have no control over their bladder or bowels. Those nerves were damaged and so they have no feelings. They can't feel that they have to go to the bathroom. On the pee front, most kids are catheterized throughout the day to ensure that their bladders are emptied. A lot of SB kids, even though cathed, will still leak pee. This is where medication comes in. We call it D-pan for short. Again, most SB parents despise the fact that their kids are on this medication but we've all been told that it is a necessary evil.
Kids who take D-pan and are cathed eventually go diaper free. Anna somehow still ends up with wet pull-ups. This post isn't supposed to be about that but I guess I'm discussing it anyway. Her urologist suspects that her muscles were contracting on their own. The odd part is that she is not supposed to stream out pee. And she sometimes does. The other day, she yelled out, "Someone do my peeps. I just peed my pants." She was wearing a generic brand of pull-ups, which didn't fit tight enough around the legs, and she peed right through everything.
This is not supposed to happen.
And every time it does, I get my hopes up.
Even though her urologist has told us that (barring any new medical procedures) she will have to be cathed and cath herself for the rest of her life.
Almost a year ago, we asked Anna's urologist how we could start her on a bowel management program. Most kids receive daily enemas so that all the poop is cleaned out of their system. It's not a foolproof system but for the most part it works. We were referred to a GI specialist.
Unfortunately, I was not able to go to those first appointments. With both of us working full time, Rich and I often times split appointments. At that time, I was in the process of trying to get Anna into the preschool with PT services. And then I had to bring Em and Allie in for testing to see if they would be accepted as peer models.
After seeing the GI doctor, Anna was placed on Pure-lax. Rich explained to me that the doctor had explained to him that being constipated can stretch out the colon and cause other issues, including urinary issues. I had questions. Why is he saying that she's constipated? Did he say that her colon was enlarged/irregular? Since when is she having urinary issues because of this alleged constipation?
To clarify, I wasn't attacking Rich in any way. We both agree that it is easier to have two parents at appointments because if one forgets something, the other usually remembers. Or one might think of a question that the other won't think of until the appointment is over. Rich felt like he understood everything while the appointment was going on.
The doctor also told Rich that they like to do this procedure where they can test the muscles of the child's bum (I'm trying to not use too many words here because I don't want hits from people searching for a.n.u.s, etc. so bear with me) to see how much control they have. Well, that's fine and dandy but ANNA HAS SPINA BIFIDA, SHE HAS NO FEELING. On his way out of that appointment, Rich had set up an appointment for this testing. We were going to go ahead with it until we received instructions in the mail a week before the procedure. We were basically going to have to get up at 4:00 in the morning, there were food and drink restrictions, etc. etc. We called and canceled because I wasn't going to put Anna through another procedure. Especially one that we did not feel was necessary.
Here is what life is like with Anna. She poops throughout the day in her pull-up. She has no feeling that she has to go. She doesn't know that she is going. There are some days that we blow through 10 pull-ups. She is almost 4 years old and in school. Kids with SB start bowel management programs around this age because really soon she and her classmates are going to know that she shouldn't just poop in her pull-up.
This is turning into a book but I have to get it all out.
Back in the spring, Dr. X, the GI specialist, placed Anna on a dosage of Pure-lax to combat her alleged constipation. (Alleged is also one of my favorite words - for reasons I can't blog about.) After six months, we reduced her dosage and weaned her off of it. I am obviously not a doctor but this is my child and I've been changing her diaper for almost 4 years. In my opinion, the Pure-lax did nothing. Yeah, her poop was a bit softer but that was it.
Now at one of those appointments in the spring, Rich told me how Dr. X explained this surgery where Anna's colon could be cleaned out via water flushed through a stoma site in her belly button. Rich knew a lot of details of the surgery and I did some research online. This is great, I thought. Let's have this done sooner rather than later.
Now before I get to the details of the actual doctor's appointment, I need to explain my mood upon entering the room. I had just spent two horrific nights with Allie hacking up a lung and crying every 15 minutes so I was just a teensy bit tired. Traffic was horrendous and it took us two hours to make our way to the waiting room. It gets better. Upon our arrival, the receptionist told us that the doctor was running "a bit behind due to all the patients arriving late."
Anna's appointment was at 9:00. We checked in around 9:20-9:25. HE DIDN'T SEE US UNTIL 10:30! And then he had the nerve to say, "I just finished seeing my first patient of the day. My 8:00 arrived at 9:30." Back it up, please. Back. It. Up. Are you telling me that we were here before your 8:00 appointment, who was an hour and a half late, but yet you made us wait to see you.
I was not in a good mood.
And I have no doubt that there was triple booking going on as well.
We all know that hindsight is 20/20 so in reading my previous comments, it may appear that I was suspicious as to what this doctor was doing. I really wasn't. I had some questions but I wasn't overly concerned. Dr. X started off the appointment by asking if we had seen any changes. Ah, no. Of course, I stupidly mentioned the fact that Anna still had wet pull-ups and we needed to discuss this with her urologist.
We briefly discussed how Anna's overall condition is exactly as it was before she went on Pure-lax. Dr. X replied with, "Well, we tried. Sometimes you have to try to see if works." So as the five minute appointment progressed, I realized a few things:
- He didn't know Anna from any of the other kids out in the waiting room.
- He thought she was constipated.
- He was blaming her incontinence on this "alleged" constipation.
- We just wasted the past six months on something that was unnecessary.
He had her lay down on the exam table and performed a fairly thorough exam of her midsection. I know he was hoping he could find some evidence of this alleged constipation but he couldn't. And you better believe that I was gloating inside.
The whole direction of the appointment caught me completely off guard and I didn't have enough time or brain power to come up with a list of questions. I did try to throw out a few questions and I felt like he deflected. I didn't get a real answer.
I have a wonderful network of MoMs (mothers of multiples) along with parents whose kids have spina bifida. We are all in the same boat with our kids and I love how easy it is to share information and support these days over the internet. So I know another mom whose daughter happened to see this same GI specialist. And you know what the real kicker is? Dr. X made the same exact statements to her during her daughter's appointment. He told us both that when kids are constipated, they tend to hold the poop in.
KIDS WITH SPINA BIFIDA AREN'T HOLDING ANYTHING IN. THEY CAN'T. THEIR NERVES ARE DAMAGED AND THEY CAN'T FEEL ANYTHING. IT IS PHYSICALLY IMPOSSIBLE FOR THEM TO HOLD ANYTHING IN.
AND IF SHE IS HOLDING IT IN, WHY IS SHE POOPING ALL DAY????
And I know the difference between constipated poop and regular poop. FYI.
Anna is supposed to have a follow up appointment with Dr. X in a few months. Rich told me that doctor's attitude with this appointment was different from the other appointments. I need to start a notebook with details of Anna's appointments along with notes, questions and answers to questions. We should have been doing this all along but we've never run into any issues like this before.
I'm giving this doctor one last chance. If he doesn't agree to start her on some type of bowel management program by the end of August, we will move on to another doctor.
As if this post isn't long enough, I need to add something else in here. As a blogger, I sometimes hesitate to post certain items because I'm afraid that my readers won't comment or find it interesting enough to even read. I've always hated how life is a popularity contest. This is our life and I'm going to stay true to it.
Thank you for reading.