Botox Injections….Where?!?

I have barely blogged over the last year or two and am just now realizing how essential it is for me to do so, not just for cathartic reasons, but also as a diary for all of Brian’s medical issues.  Many of you have kept track of Brian’s gastrointestinal issues on Facebook, but I’m going to blog about them now so I can have everything in one place for the future.

Brian’s GI issues started at birth when it took days for him to pass his meconium.  Little did I know that would be the first sign of a lifetime of pain, straining, enemas, Miralax, Senna, NG tube cleanouts, countless abdominal xrays, and numerous other things.  Brian was born in a German hospital while we were stationed in Wiesbaden, and the communication barrier didn’t help me as a new mom.  Sure I learned the very basics of communicating, but that didn’t include “give me the damn epidural NOW!!!!”  My midwife, Katrina, kept saying it was too early to get an epidural, until it wasn’t.  Brian entered this world at 7:49pm on August 29th, 2006 with his mama screaming a few less than desirable words, but he survived and I did too.

Some of my closest friends know that I wrote down everything the first year……When he had a wet diaper, when he had a BM, when he nursed, which side he nursed on and how long on each side, when he slept, and when I had to start giving him formula when he was failure to thrive due to him being unable to latch (later I would find out this was due to his hypotonia – common with his 16p11.2 duplication) just to name a few.  My family teasingly made fun of my “notebook”, but it has come in very useful throughout his life.  I might not have remembered how long it took him to pass his meconium otherwise, or how often he had problems with constipation.  He had his first ER visit on October 6th at 5 weeks old due to constipation and had to get an enema after I saw blood in his stool earlier that day.  We constantly had to deal with his constipation issues from the very beginning.  The notebooks also remind me that he had his 1st appointment with a neurologist on July 16th before he was even a year old because he was rolling his eyes back into his head and clinching and shaking his hands.  He had his 1st brain MRI on August 7th, as well as his first appointment with an orthopedic surgeon for his outward turned big toes.  It also reminds me of how early he had all of his teeth……tooth #16 came in on his 1st birthday!!!  Fun fact – Brian had an extra baby tooth.

As Brian is a little less than 3 months from turning 11 years old, his gastrointestinal problems keep getting worse.  At this point, he has now been admitted to the Monroe Carell Jr. Children’s Hospital at Vanderbilt three different times for an NG tube cleanout due to fecal impactions.  I’ve lost count of the number of abdominal xrays he’s had this year, and it’s only June.  The Sitz Marker Test he had last month showed that after 5 days, he kept 23 markers in the descending part of his colon showing that he had motility problems.  If they were all in the rectum area, that would show that he was having issues pushing his stool out. He could have motility issues and problems with his anal sphincter muscles as well.  To determine if he had additional problems, his gastroenterologist ordered an Anorectal Manometry test.  We traveled up to Vanderbilt 3 weeks ago to have this test done and also to have his 3rd NG tube cleanout.  Unfortunately Brian would not cooperate for that test (I doubt I would willingly let someone put a tube with a balloon on it up my rectum either without some heavy medication…ha!), so we do not know whether he has full control over either his external or internal anal sphincter muscles.  His previous gastroenterologist did this test but gave him his usual Versed before the test, unfortunately the Versed causes all the muscles in your body to relax and therefore the test was inconclusive.

We had a followup with Brian’s gastroenterologist today to discuss our next steps since we were unable to do the Anorectal Manometry test.  At this point, Brian is on a capful of Miralax a day to draw water into his bowels and soften his stool.  He’s on two Senna tablets a night to contract the muscles in his intestines and push the stool through since he has motility issues.  We also use fleet enemas if he’s unable to have a bowel movement for several days.  His gastroenterologist wanted us to increase the Senna tablets to 6 at a time if possible, but it caused Brian to cry out in pain at night due to severe cramping.  At one point we did get the Senna dose up to 3 tablets for a few days before the 3rd NG tube cleanout.

In addition to his constipation issues, Brian has been having issues with retaining urine for long periods of time.  He often goes 24 hours without urinating and has gone up to 30 hours at one time!!!  Luckily I have been recording data on his urine and bowel movements for over a year, and this helped his urologist see that it is a continual problem and that it is increasingly getting worse.  The urologist diagnosed Brian with Vesico Sphincter Dyssynergia.  His central nervous system signals are being disrupted and the muscles that usually work together to empty urine are not working correctly.  This is associated with neurologic conditions such as spina bifida, multiple sclerosis and spinal cord injuries.  I am not sure why this is happening to Brian.  I would assume it’s due to his genetic duplication since all of his other problems seem to be linked to it.  Unfortunately his urologist said this condition will continue getting worse until we eventually have to use a catheter to get Brian’s urine out of his bladder.  The thought of this terrifies me since we have to use Versed to do any type of medical procedure……How will he be able to tolerate having a catheter put in him???

Today I was talking to Brian’s gastroenterologist about Brian’s quality of life.  Brian is constantly in pain, and he has a high pain tolerance.  He’s in pain from being constipated.  He’s in pain from the Senna contracting the muscles in his intestines.  He’s in pain from straining to push urine and stool out of his body.  He’s in pain from enemas.  He’s in pain from being cleaned out with NG tubes and GoLYTELY.  I understand the necessity of Senna, Miralax, enemas, etc., but we have to do more to improve Brian’s quality of life!!!  So we discussed how we could do that.

We are adding Dulcolax (laxative) to his medication list to see if he tolerates it.  We are increasing his Senna to 2 tablets in the morning and 2 tablets in the evening.  We are continuing his Miralax and enemas (when needed).  In addition to this, we are going to try anal Botox injections.  The Botox injections will make the muscles relax and help with the passage of stool.  The gastroenterologist thinks that Brian may be holding on to his stool due to the pain he knows it will cause when he is passing it.  My husband and I disagree with this hypothesis because we watch Brian constantly straining to try and push his stool out.  If he’s actually not able to control his anal sphincter muscles, which the gastroenterologist also thinks may be a possibility, the Botox injections will help with this as well.  Unfortunately the muscle relaxing that occurs from Botox injections only last for about 3 months.  In addition to this short timespan, the surgeon that Brian’s gastroenterologist prefers to use is leaving in 3 weeks.

The current plan is to give Brian the anal Botox injections before the surgeon leaves in 3 weeks (I’m not sure what we will do after that if the injections work and he needs future injections, but we’ll cross that bridge when we come to it).  In the meantime, I’m going to start calling motility specialists around the country to see what other options are out there for Brian.

3 notebooks full of Brian's 1st year.

3 notebooks full of Brian’s 1st year

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