Yes, this is still happening. We are still dealing with bathroom issues with Sam. She is 6 years old and we still hold our breath every day if or when she will have an accident. It can be anything from a few drops to something needing a new pair of underwear and change of clothes.
I do believe we have the pooping part under control and Sam being on more than a full cap full of miralax every single morning is ensuring she goes regularly. Fortunately those accidents have stopped over a year and a half ago. Now we are dealing with the urinating. We are still trying to figure out if it is medical (there is something physically wrong with Sam) or if it is behavioral (she doesn't want to go and holds it until the last possible minute making it way too hard to get to the toilet in time). Sam claims she doesn't feel the need to pee. Is this because she has years and years of demonstrated behavior of holding it in and now its an unconscious part of who she is? Hello, back in the day, the girl went 19 days between pooping. Or, is there really a medical reason that is keeping her from feeling the urge to go?
Our pediatrician had Sam go for a pre- and post- void ultrasound at the end of last school year. It showed that she wasn't fully emptying her bladder. We were then referred to the Voiding Dysfunction Clinic at John Hopkin's in Baltimore. Who knew they even had something like this available?!?! The urologist we met with had Sam get an x-ray and we are to measure all her pee to see how much is coming out. Fortunately we only have to do this at home. The x-ray showed a few things. 1. Her colon is still backed up with stool. Really? How is this even possible with all the miralax and pooping she does on a daily basis? So our first step is to do another major clean out. Sam stayed home for 2 entire days. After 5 (yes 5!) cap fulls of miralax and two doses of ex-lax ALL WITHIN 8 HOURS!, the girl finally started going the next day. Wow, she is one tough chick to have taken all that in before it started producing any kind of results. 2. Apparently two of the lumbar bones (at the bottom of tail bone) are smaller one side than the other. This could be partially impairing her bladder and it could also be a sign of future scoliosis.
From the results of the x-ray we are now going back for an MRI, follow-up with their GI department, a follow-up with the urologist and potentially follow-up an orthopedist. All at Hopkins.
I am exhausted at just writing that above sentence let alone doing all these appointments. Sam has a really great handle on all this and realizes we are trying to find out what is wrong and fix it. The majority of these appointments are in October. Hopefully by the end of next month we will have a good handle on what future treatments we need to do. And if it turns out to be all behavioral, well then, Sam is still rocking therapy on Thursdays. Fortunately that is local.
I must add that dealing with John Hopkins has been nothing less than spectacular. They have their act together and all the departments do a stellar job of communicating. It has been a pleasure scheduling and showing up for the few things we've already done. It makes me feel really good to know that we have this caliber of medical care in our backyard. And I LOVE their parking garage. Electronically it will tell you exactly how many spaces are available down each aisle before you decide if you want to turn down it. A little red light above each spot alerts you that the spot is taken. A green light lets you know the spot is available. Even parking at Hopkins is great.
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