I have had many questions from family and friends about Beck’s health problems.He has a few but the main one that we are having a hard time with is Clostridium Difficile or C. Diff.
Even strangers have reached out to share their journey with this terrible infection & tips that helped them. We’re so grateful for the love, support, & prayers.
What is C. Difficile
Disruption of the gut microbiota, usually though not exclusively through antibiotic use, can cause beneficial bacteria to be eliminated. Because C. diff in its spore form is very hearty, wiping out the good bacteria allows C. diff to reproduce rapidly. As soon as 24 hours after the C. diff begins to multiply, they give off toxins that damage the lining of the colon. The cells of the digestive tract become “leaky”, raising the alarm among nearby immune system cells, and leading to diarrhea. Without treatment, this leads to inflammation of the colon, called pseudomembranous colitis. In some patients, this leads to a severe infection referred to as toxic megacolon, which can be life threatening.
The Struggle This Week
Poor little Beck had a really long and rough day yesterday – we were up at Primary Children’s all morning and night.
He had a doctor appointment in the morning then we got a call that there was a cancelation so we could come do his sleep study that night. We ran home to get our things and headed back to the hospital. The plan was to spend the night at Primary Children’s while Beck was being monitored for an overnight oximetry test.
While getting all the monitors and cords hooked up, Beck was having his usual “C.Diff Episodes”, as I call them, where he is in sooo much pain that he can hardly function. It’s heartbreaking to watch & unfortunately happens too often. He convulses, screams the most pained cry, holds his breathe, and thrashes around. The Respiratory Therapist conducting the sleep study was stunned. “This is really bad. You can tell he is in a LOT of pain!” Yes he is! – Finally someone up there was believing me & witnessing it!!! His episodes come in waves throughout the day & have been pretty constant basically his whole life. Once he projectile vomited all over, we decided that continuing the sleep study would definitely be impossible. The RT quickly rushed Beck over to the Emergency Room.
When we finally saw the ER doctor, Beck’s “severe pain wave” was passing and he literally just started smiling at the doctor… I was thrilled that he was feeling better, but of course… the timing. ‘When you take your care to the mechanic…’.
We are learning that there are two very separate views on C.Diff in babies under 2 years old. Some Doctors don’t believe that children under 2 years old don’t have the receptors to colonize the infection. Other doctors have seen littles with the symptoms and success with treatment so they believe it is possible that they can have it that young.
Beck has tested positive (for all three tests) every time he’s been tested and shows dramatic improvement when being treated for it. I’m at a loss. We were finally discharged leaving me as confused as ever.
Jaycob was able to come home a bit earlier than expected which was very relieving. He actually was driving in when we were getting home from the hospital. We are still consulting with a lot of doctors & professionals to figure out the next steps in treatment. Praying that we can beat this soon. I can’t watch him suffering anymore.
Where do I even start? I’ll have to tell the short abbreviated version or I’ll never finish this post. Bear with me, I would have time to proof read this much but have had so many people asking so I figured this would be the easiest, most efficient way to explain the details.
Basically Beck has been sick probably since he was born.
Problems that we started seeing:
- Throwing up and has had severe diarrhea almost every day.
- TMI – but when I say severe diarrhea I mean it. I can tell by the smell when he has C. Diff. It’s seriously the most toxic smell ever. It makes normal poop smell seem like roses.
- Having a problem choking when eating, no matter how thin or thick it was.
- Random long pauses in breathing and holding his breath.
- Severe stomach pain that comes in waves and is often unbearable.
- Grabbing at his head a lot and whining (guessing that means he has headaches).
- Convulsing movements when stomach pain is bad.
- Painful squeals.
- Delayed motor skills – wasn’t even rolling at all by 10 months.
- His physical & occupational Therapists believe that this probably has everything do do with having C. Diff. He’s been in so much pain that he hasn’t wanted to move.
- Choking on every bite of runny puree foods. Then holding his breath for a while.
- We had a swallow study test and found that his trigger was delayed. The Occupational Therapist said that it could possibly be caused by acid reflux making the nerves less sensitive so it would be delayed triggering, causing his food to go down the wrong tube.
- Beck’s been on acid reflux meds for over a month now & is doing feeding therapy. It’s helped SO much! He doesn’t choke anymore.
I frequently brought it up to his doctor & called the nurse on multiple occasions but I guess they didn’t quite understand the severity of it. I would ask if we needed to see specialists or therapists but most things were just put under “probably just normal preemie problems.”
Really quickly, we LOVE our doctors & nurses. We do not blame them because this wasn’t caught sooner. I think there was some miscommunication or lack of communication between the doctor & nurse. I don’t think the doctor knew how many times I was calling concerned.
My mama bear instincts couldn’t take it anymore. I just knew this wasn’t nothing. While back and forth to California to be with Jaycob, we had to see another doctor. The new doctor didn’t know any of the history. She walked in and said, “He’s a Preemie? Longterm stomach problems? It’s probably C. Diff.” She ordered the tests & sure enough – Positive for C. Diff.
I remember feeling so relieved that we finally knew what is was and we could get started fighting this terrible infection & then he’d be all good to go and healthy. I had NO idea how hard and crazy the next few months would be.
After jumping through tons of hoops to get into a GI specialist & waiting 2 months for the appointment, the guy walked in and was super angry with me for Testing for C. Diff. I was in complete shock. I am not a doctor so I can’t order the test… also, he tested positively and has been on 2 rounds of antibiotics to treat it and it had been helping a lot (he just keeps getting reinfected).
He was very rude and would not answer my questions when I asked why he didn’t think it was C. Diff, what should we do about his pain, and what else could it be?
Finally, after continually asking why I tested for C. Diff, I asked, “what should I do about his pain? It’s more than just normal teething pains. He is up every single hour not just wanting to eat or be held but cringing in pain and squealing.”
Then in a condescending way he said, “yeah, well I have 5 kids so… I know how it is.”
That’s when I couldn’t take being overly sweet anymore.
I said, “That’s great you have kids! I have another daughter as well. I don’t consider myself an expert at all in parenting and never would even If I had 100 kids. But I do know that you’re one of the experts in Gastroenterology, and that is why I worked so hard to get my son here to see you. If anyone is an expert on Beck… it’s me. I know that there is something wrong. His cries are not common baby problems – he is in severe pain.”
Well… he stood up and walked out.
This was the first time I learned that there is a big difference in opinion on C. Diff in Infants under 2 years old. With no plan of action or recommendations given, that doctor ended up just standing up and walking out. I was astounded.
Now I was right back to square one. Trying to find a new doctor, researching the different opinions on C. Diff before 2, waiting for another appointment that was months out. Since then we have seen two more GI doctors.
One of them who works with the first doctor, said the same thing he did. Then when I was walking out of that appointment of course I ran right into the first doctor…
The other said, “So he tested positive every time, he responded well to treatment for the infection, but they don’t think that he has the receptors to have the C.Diff colonized? Sounds like he obviously does to me.”
The two doctors who don’t believe he has the receptors don’t have any treatment plans or ideas what could be causing all these problems. Then last night happened – details above.
What am I supposed to do now?! Here I go again with loads more hours of research, dealing with the vomit and diarrhea, and the worst part – seeing Beck still suffering.
I will try give Beck Updates for those who have expressed interest. I hope that his experience and our findings can hopefully help others avoid having to deal with all of this mess.
If anything I hope that it inspires others to be an advocate for their child. It’s so important.