Question about my 3 year olds health problems

[jasonjswenson]

Hi my name is Jason and my son was diagnosed with hirschprungs disease at 4mo and had surgery for it. Immediately post surgery has had constant unrinary retention, after numerous tests, this will be life long issue. He also has issues stooling, ranging from incontinence to constipation. He also has some lower abdominal weakness and has to lean to his side to sit up from his back. He occasionally does say, "ouch" when cleaning up his stool or cleaning his penis. Wondering of this could be PN or PNE as a result from his bowel resection. Any help on how to proceed or input on possible other causes would be greatly appreciated. Whe have seen gi, physical therapy for pelvic floor dyssenergia, amd are scheduled to go to Cincinnati for motility testing among others. Thanks.

[Violet M]

Hi Jason,

It sounds like you have been through a lot already with your son. What a heartbreak it must be to watch him struggling with health problems.

He has a complex set of issues so it's hard to answer your questions definitively but I can tell you generally that the pudendal nerve innervates the external anal sphincter, the bladder sphincter, and also has a branch called the dorsal penile nerve. So whenever there are neurological symptoms in those areas you have to consider the pudendal nerve. Any time there is a surgery involving the pelvic area, there is a risk of either damage to the pudendal nerve or the formation of scar tissue afterwards that can impinge on the pudendal nerve. There are many variations in the anatomy of the pudendal nerve and its branches, and since it has a number of different branches coursing through the pelvis, some of them quite small, it can be difficult to completely avoid touching it or getting near it in a complex abdominal/pelvic surgery such as what your son went through.

Does your son have to catheterize or is he able to urinate on his own?

It's hard to say whether the stooling issues might be from there still being some diseased bowel left or whether it is related to something else such as PN or maybe a combination. Another thing to consider is nerve root impingements or spinal radiculopathies as a result of the surgery, although my guess is, that is less likely. Has he had a spinal MRI to rule those out -- including lumbosacral area, lumbosacral plexus, and pelvic areas? I know it's a trick to do an MRI on a 3 year/old but if you keep them awake through the night and then give them an oral sedative just before the test it can be done. My son had one at that age.

I think at this point it is important to avoid constipation as much as possible by using a daily mild laxative such as miralax with a high fiber diet to keep his stools the consistency of applesauce in order to prevent straining and further nerve damage. Also a regular bowel program of toilet sits for 10 minutes or so after meals might help -- with some paper and markers or an Ipad to play with while sitting on the potty so he can relax. Eating typically stimulates the alimentary canal, so after meals is a good time. Drinking plenty of water is important to prevent hard stools too. I work with children who have bowel issues and these are things I typically see working the best for kids. How did PT work out for him -- did it seem to help?

Unless your son seems to be in a lot of pain and frequent discomfort, I'm not sure I would pursue any type of invasive treatment for him occasionally saying "ouch" when cleaning up, because sometimes "the cure" can be worse than "the disease" and if his symptoms are mild and infrequent, you may just want to take a "wait and see attitude" on that, especially if nothing obvious were to show up on an MRI. I could be wrong but that would be my personal instinct.

Wishing you all the best as you consider what options to pursue for your son.

Violet

[jasonjswenson]

To answer your questions, yes he does have to catherterize. He has an apendicovesicostomy that we cath every 3 hours. He has had and mri to rule out spinal abnormalities, none of the pelvis yet though. Have tried several combinations of stool softeners/laxative/benefiber, none seem to really help regulate his stools.

Thanks for your time.

[Violet M]

Sounds like a difficult routine to have to catheterize frequently. At 3 years old it would be tough since that is about the age kids potty train and he would start to be aware of bowel and bladder issues.

I have never had any luck with stool softeners or processed fiber products either.

Benefiber ingredients: Wheat dextrin, modified food starch, pyridoxine hydrochloride (vitamin B6), folic acid, sodium citrate, citric acid, silicon dioxide, sodium benzoate, sorbic acid, cyanocobalamin (vitamin B12)

Wheat Dextrin can have a constipating effect. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4415970/

Miralax doesn't do anything for me either but I never actually tried taking it on a regular basis. It does work for some people and is often recommended for kids. But if it doesn't work, there are other things you can try, such as magnesium citrate tablets. They can be crushed and put into food if you need to. You can also get magnesium citrate in liquid form. If your son is having hard stools you could ask your doctor about trying mag citrate. My physician told me it is safe to take on a regular basis. In rare cases you can get magnesium toxicity but I think you would have to be taking huge amounts of it or have some other underlying disease that wasn't allowing you to excrete it properly. https://emedicine.medscape.com/article/246489-overview

Since the MRI did not show any spinal problems I guess you could consider possible muscle injury that could be causing the abdominal weakness. I expect your PT would be able to evaluate him for any particular muscle injury such as the rectus abdominis. I wonder if manual therapy would be helpful for the abdominal weakness. Or maybe your PT already tried that.

Anyway, just throwing some info and ideas out there in case you might find it helpful.

Violet

[mom]

So sorry for all your little guy has had to endure .
As I read your initial post the issues that arose after survey are what stood out to me . Have they checked for or considered nerve damage as a result of anesthesia? Just curios .

Thinking about your family.