Today was an amazing day – we learned more about Gannon today than we have in a long time.
Gannon has not been back to his normal self in…a long time. There was COVID, then the 13 days of vomiting, then this week brought the worst, most painful bowel movements Gannon has ever had. He spent a full 24 hours either in the fetal position or screaming and straining to have a bowel movement or he was just so clingy and fussy – straining so hard his eyes rolled back in his head for a minute. It was the worst we have ever dealt with. Mom and I and Gannon were all crying. I had enough.
I called Iowa City and I called our old GI doctor at Milwaukee. Something has got to give after nearly a month of misery. Our Milwaukee doctor got back to me first – he told me several things:
- A normal genetic test does not rule out a connective tissue disorder. Up to 30% of kiddos with Ehlers Danlos Syndrome test negative for the condition.
- He is leaving Children’s of Wisconsin next week. He is going to launch a new motility practice (I think in Chicago) and we are welcome to see him there.
- Gannon needs an X-ray when he has trouble pooping. He needs an X-ray to see how backed up he is, then he needs to be aggressively “cleaned out” to give us a fresh start. Then he needs a follow up X-ray to confirm he is cleaned out. THEN start the bowel regime back up (Miralax BID and Senna daily). Give it a month, keep a diary of his poops and meds and symptoms. He recommend the clean out is done under close supervision and said if we lived closer he would bring Gannon into the hospital to do the clean out.
- If Gannon is STILL having problems, he needs to go to a motility specialist again. He needs to get Botox again, it needs time to work (2 weeks) and then he needs to be fully cleaned out again and have the anorectal manometry again to see if the Botox works. If it doesn’t work, Gannon needs to be referred on to either Nationwide in Columbus, Ohio or Boston Children’s hospital for a procedure called a manectomy. Only a handful of surgeons in the country are qualified to do this. Under anesthesia they make a cut in the internal anus. If they cut the muscle and not the anus, Gannon would be incontinent for the rest of his life. This is extremely risky and would be a last resort.
So we are super sad that he is leaving Milwaukee but we will likely follow him wherever he goes.
With that, I called our PCP to get an X-ray like he recommended- they said he has to have an appointment and we can’t just get an X-ray. Okay, fine. I questioned whether or not we even needed one because Gannon had gone several times since yesterday – figured he was starting to get cleaned out.
We saw my doctor who has never seen Gannon before but he was AWESOME and totally agreed with our GI doc’s plan. We got an X-ray.
Gannon is backed up to high heaven. HARD stool throughout the intestines – even with daily miralax, even with having several bowel movements, even with the stimulants. So much so, he offered us to be admitted to the hospital for a full clean out including enemas and an NG tube to give him fluids to make him go – attack from both ends.
I declined, as an ER nurse I’ve given plenty of enemas in my day. This was nothing new for me.
We learned so much about Gannon today – we have a plan. We now know we can’t rely on regular bowel movements to tell if Gannon is constipated. He will probably need regular X-rays and clean outs to make sure it doesn’t get to this extreme again. I feel validated. I feel like the power is back in my hands. I feel like it isn’t my fault.
While he isn’t vomiting anymore, that likely had something to do with this. I just know that I never ever want to go through what we witnessed yesterday again. That was so so hard to watch. It was terrible. I wouldn’t wish it on my worst enemy.
Is this all TMI? Probably. But in our house, poop is a very important subject. Nothing embarrassing about it. Might as well be telling you about a bum shoulder or a sore throat. We need to normalize it for Gannon.
Anyway, thanks for reading friends! Cheers to progress in management of Gannon’s constipation!
- Friedman Family Update – March 2023
- ONE MORE MONTH!
- PROUD MINI VAN OWNER!
- Gannon Update – Genetics 🧬
- Friedman Fam Update – January 2023
You are doing a great job fighting for your little man! We had the back up issue with my daughter and an xray with a specialist. We had to add lots of fiber to her diet (food diary really helped) and decided to eliminate milk products as well. Her celiac test came back negative, thank goodness as she loves bread. The milk elimination made such a difference for us – I know not the issue in your case but we went through the fetal position of pain a few times and constant belly pain. I was shocked at all the things that add milk powder. Thankfully, it rarely happens now and it is under control. Hoping this clean out goes smoothly for you all. Big hugs to you.
Wow! Just wow! Y’all have been through so much! I’m so glad you found your doctor in Wisconsin and will be able to follow him to Chicago. I’m so glad your were validated!! That means so much. No one has worked harder to find a solution for your baby boy! It reminds me of the saying that you don’t know how strong you are until you have to find out how strong you are! Prayers for you guys!
Oh my gosh, Kalissa! Finally answers!!! Whatever the answer, you can deal with it because you guys are good parents – poor Gannon! Oh, how miserable he must have been and to watch it would be excruciating for you. Does Carver get upset? Oh my goodness, I will pray hard for you guys!!!
Try to eliminate all wheat flour from his diet. I am not allergic to gluten but it stops my bowel movements after one helping of pizza. Mostly processed wheat/white flour. It flattens the bowel. PLEASE READ THE WHEAT BELLY BOOK. I was having massive problems with motility and boatling. OVERLOAD of wheat is not good for anyone. I was in pain and on laxatives all the time.
Gannon is lucky to have you to fight for him. Talk poop all you want. It is a part of life. We all poop. 🙂 Best of luck with the clean out. Hope you are all feeling better soon!
Bless his heart! I’m so glad you have been able to find guidance and a plan. Putting you back in control can make a huge difference in how you are able to manage life for all of you. Keeping you all in my prayers. Gannon is so fortunate to have you and Craig as his parents. Oh yeah! Talking about poop is just part of raising children.!
So happy you have a plan going forward and Gannon is so fortunate to have you as his advocate! When you mentioned vomiting and constipation together it reminded me of my brother in law. Kind of TMI but he has issues with constipation at times and if it gets real bad he vomits. Always thought it was odd until now. Prayers!
OMG. Some day, many days from now, this will all be in your memory and things will come out all right!
Praise God for answers and a plan! Gannon is Blessed with a fighter-Mom who doesn’t take no for an answer. I hope you all got some good rest last night.
Hugs to you. 🙂
How can any dr look at that distended tummy and tell you there is nothing wrong?! I am glad you are getting some answers. Wondering if this will be something he will have to have the rest of his life or will he be able to manage more on his own as he gets older. Hugs. pam
Oh happy day! knowing you have a game plan is so helpful and then finding a doctor willing to just order the x-ray and being able to see how blocked he really is. I feel for you and Craig having to watch your child scream in pain, how awful. He is lucky to have you both as his parents.
My oldest son had problems pooping but nothing as bad as Gannon. I hope that the little guy will get the help he needs
You are so fortunate to have a GI doc that “gets it”. I would follow him to the ends of the earth. Your poor baby. By the way, I have a friend in Seattle who goes to Boston 3 to 4 times a year with her 5 year old son. Air travel is not cheap, but only Boston has the best doctors. The hospital in Seattle agrees to work with the Boston specialists, which cut down on every 6 to 8 week flights to Boston.
Yay! So glad you have more information and a plan to follow. 🙂
Poor Gannnon–and the rest of the family!
Constipation is a problem for lots of people and talking about poop is okay for me.
Goo:dress you have all been through a lot. No, not TMI for me, we all learn this way, you are an excellent advocate for your son. Hope Gannon gets some relief now and a new plan is underway for him as well. Sorry he had to go through so much pain to get some help tho.
Sorry about typo should say Goodness.
What a blessing to have a plan! Our youngest daughter had constipation issues and it wasn’t fun. When they are little they don’t understand and it compounds everything. Prayers for your plan to work and to help Gannon ! Take care.
Yay for a plan!!! Poor Gannon and poor parents…it is truly hell to watch your baby go through something like this and you can’t seem to do anything to help them!! You aren’t doing anything wrong and I’m so glad you finally have doctors who will work together for the best outcome for Gannon!! Poop is something to be aware of for everyone…it is an important indicator of your over-all health. Since being diagnosed with diverticulitis and having a foot of my colon removed last year, I’m paying attention…but I need you to be my mom and help me figure out what I’m supposed to eat to maintain a healthy digestive tract!!
What a wonderful mom and fabulous advocate!
Hope Gannon much improved now – and parents too!
My problem not helped by too much iron in the diet : not enough water : yes too much bread : but taking kiwifruit as fruit or juice beneficial, and spinach has the opposite effect !
We are such complex beings and these days so many additives in food.
Take care with those precious children, they have wonderful parents and grandma.
Yep, when you have kids , you talk about poop a lot! Two of my little guys used to get plugged up and constipated with firm stools. Turns out the apple juice they loved was constipating to them! we added colace to their drinks for a while and changed to water for hydration and it resolved . So hard to see our little one in pain and discomfort!! Hang in there and stay strong!.