By the time you’re reading this post, my 7 month old son Gannon and I are likely well on our way to Iowa City to the Stead Family Children’s Hospital. We’ve been awaiting this appointment for over a month now.
If you follow my mom’s blog or my personal Facebook page, you probably are aware of Gannon’s health issues. I say health issues because, well, we don’t have a diagnosis yet.
First of all, this is a little odd sharing with the world but it is just a body part: Gannon’s testicles never descended to where they need to be. I’m telling you this because it is an important part of the story. One is still hanging out up by his bladder and he will need surgery in the next few months to fix this. Anyway, onto the rest of the story…
Last March, Gannon was barely 6 weeks old. I brought him to the doctor after he had projectile vomited a few times and had like a 99 degree temperature. While assessing him we noticed Gannon’s belly was way over distended.
An abdominal xray showed LOTS of gas in his bowels and “the rectal vault was empty” therefore suggesting some sort of illeus or blockage somewhere in his digestive tract. The next day he wasn’t any better and he started having these “screaming spells” where he would pull his legs up to his chest and just scream every 5-10 minutes or so.
We brought him to the ER where I work this time instead of the clinic. They did an ultrasound – they found something called “intermittent intussusception” – his bowel was telescoping into itself.
We were sent to St. Mary’s Hospital in Rochester (the hospital associated with Mayo Clinic) and in the ER they repeated the ultrasound, did a rectal exam, started an IV, catheterized him for a urine sample and decided to admit him for further testing.
The ultrasound showed that the intermittent intasussception had relieved itself but while they were checking out the other organs, they couldn’t see what they needed to because his bladder was so distended/large and they saw “debris” in his bladder. That was about all that was said about it. This is a significant part of the story but not until just recently.
They also found during his rectal exam that he had a very narrow anus, rectum, and even colon. They were suspicious of Herschprung’s disease which required a rectal biopsy which eventually (4 days after he was admitted) came back negative.
I’ll be honest, our experience with Mayo wasn’t great. Testing took FOREVER. There was plenty of sitting and waiting. I had to beg them to give him Tylenol for when he was screaming. We were admitted on a Friday – he got a CT scan, a rectal biopsy was done at bedside, and that was it. We didn’t get any results until TUESDAY when they promptly rushed us out the door when all results came back negative. They told me to stop breast feeding because maybe he was allergic to milk. We bought really expensive formula to try at home. They told us to use glycerin suppositories to relieve his belly distention which was still very much a problem.
The CT scan at mayo ALSO confirmed he had a large distended bladder – but again – no one said anything.
I asked for a referral the the University of Iowa – about 2.5 hours SOUTH of our house. The referral was sent on Friday morning. I had a call by 12 pm telling me to come down to see a gastrointestinal specialist at 4 pm THAT DAY! Talk about service! We spend an overnight at the University – a brand new children’s hospital and had an xray, blood work, an ultrasound all by about 7 p.m. that night.
They rounded on him the next morning. They dismissed everything that Mayo said – he could breastfeed and he didn’t have to do any “anal dilation” and while they didn’t know why his belly was so big, he was released that day. A 16 hour hospital stay told us more than a 5 day hospital stay at Mayo.
While I wasn’t convinced that Gannon was “normal” I felt at peace with the U of I’s conclusion.
Flash forward to August 2019:
Gannon was 6 months old and he is NOT sitting up by himself – not even trying. Which isn’t a huge deal but something we have been monitoring. He’s almost 8 months now and while he’s “better” at sitting up he still topples over and can only sit up if he is using his hands to support him.
Gannon’s belly is still so big. He has soft spots in his belly. If he drinks a bottle I can feel the fluid slosh up against his stomach if I hold my hand over his belly.
Gannon cries every time he has a bowel movement – just screams – but his feces are soft and not what you would expect for constipation.
Gannon breaks out into this rash after he eats baby food. We still aren’t sure what is causing that.
Gannon chokes very often. Crackers are hard for him, even baby food will send him into a choking fit.
Gannon doesn’t babble or practice talking like other babies his age do and sometimes he isn’t very good at engaging or maintaining eye contact.
I think I have Gannon diagnosed. We won’t know if I’m right until tomorrow after we see the genito-urinary specialist:
I think Gannon has something called Prune Belly Syndrome (PBS) or Eagle-Barret syndrome. However this is usually diagnosed during an ultrasound during the pregnancy. If Gannon has this it would be a variant of the disease.
The three symptoms of PBS is undescended bilateral testicles, weak or missing abdominal muscles, and distended/large/not functioning urinary tract organs.
Gannon has all three without any further testing. Remember they couldn’t see his GI tract because his bladder was so big and descended? Remember it showed he had “debris” in his bladder? Remember his testicles haven’t descended? The big huge belly could be explained by weak or missing abdominal muscles. That’s probably why he isn’t able to sit up yet.
So as symptoms have progressed this past August/September we are again referred to the GI specialty and now GU. Both of those appointments are early tomorrow morning. Here’s what I hope to gain:
- a surgery date for his testicular procedure
- further imaging of his GI tract – preferably a VCUG (voiding cystourethrogram)
- GI to advise on why he cries every time he poops (probably a rectal exam to determine if he needs more imaging)
- I’d like to know how many abdominal muscles are actually present
- How do we build up the ab muscles he has?
- How do we monitor him long term?
So that is that. I feel crazy sometimes. Obviously something is not right but obviously he’s growing just fine. I do know what a sweet personality he has. We love him so so much. His diagnosis won’t change the way we feel about him whatsoever.
I’ll update when I can.
I feel for you so much. My niece is going through a similar problem with her youngest. He had surgery very soon after being born, I think for some type of hernia, but don’t remember exactly. He was thought to be doing fine for a few years, (he’s now 5) but several months ago, he started having severe abdominal pains. They went the gamut with him and doctors and hospital and tests, etc. No one knew exactly what was wrong. Finally they decided it had to do with his pancreas, he isn’t diabetic though. He’s been to the Children’s Hospital in Cincinnati a couple of time, and the Children’s Hospital in KC here in Missouri several times and our local hospitals several times. Now they have found out that some of his internal organs are not in the correct place or doing the correct function. Why didn’t they find this out when he was born and had surgery? And what are they going to try to do to correct it? She is about at her wits end and has started having blood pressure problems from all the stress. She also has 3 other older children. I’ll add you to our prayer list.
Prayers for you and your family. As a mom, you just know there’s something wrong so matter what the doctors say. And as a nurse, I’m sure you feel it more. Please keep us posted on how your sweet boy is doing and the upcoming appointments.
Love and prayers
Prayers that you will get the answers that you need quickly and something can be done yo give Gannon some relief . You sure have been jerked around, and that poor little boy has paid for it.
Prayers for your sweet boy and his family. You are doing all you can as patents and a great job.
I hope you get some answers today Kalissa! I know the hospital/doctor run around can be so frustrating. Gannon is such a cutie.
Our thoughts and prayers are with you and your adorable little guy. What a precious gift from God.
So sorry about your little boy. Prayers sent for your family and your little one.
Praying for you all. Hoping you fine out what the problems are and that they can be fixed. Gannon is such a sweetie.
I truly hope you get the answers you need ?
My prayers are with you and your family as you navigate these medical questions . He is so precious!
Sending prayers for answers and for your wonderful little guy… his smile is amazing… hang in there kiddo….you have strength for the both of you.
Hope all goes well and you get some answers and can get a plan in place. Too often doctors and specialists disregard Mumma’s instinct, great job on being such an fantastic advocate for your little man! xo
Sending positive thoughts and hopes for answers!!
Your little one is so precious, that smile of his is a true heart breaker I love his happy face.
I knew something was wrong from the first time you posted picture of Gannon on your mommas blog.
Have so enjoyed her thru the years now I can enjoy yours. My prayers are with you and yours
You guys are Kramer Strong. With love and hugs Kathy G