23 month old with C-diff

[Lvmyliberty]

My son was just diagnoised with C-diff. He is actually in the hospital still on a ventilator. He has alot of cardiac issues no spleen and GI issues. He is feed through a j-tube. Long story short his tube feel out last sunday his instestines were poking through so I took him to ER to get it back through. They did an x-ray to make sure everything was ok but they kept seeing air outside the colon. So at 2am he was in surgery because they thought he a hole in his colon. Turned out it was some kind of infection. I found out Thursday he has C-Diff. He has been on amoxcillian since he was born for the no spleen. He is still on the vent due to complications from retaining to much fluid. Hopefully he will be taken off. He went down hill really fast on sunday. He had three smelly diapers between Sat night and Sunday afternoon. I thought he had the stomach bug since I had had it on Thanksgiving. I had never heard of C-diff before but it is pretty nasty to make my son so sick. Is this pretty common or a more severe case?

[anlockwood]

My prayers are with your son and your family and will continue to be. I am truly so sorry to hear of all that your son has endured already and then to hear about him having to deal with C Diff on top of that. I can't imagine what you must be going through. I have an 8 month old who is dealing with his second bout of c diff and I myself have also had it. It is definitely a harsh illness to deal with. I would really encourage you to look around this site and ask as many questions as you might have. Throw them out there because there are many wonderful people on this site who would love to help. I don't know what advice to give you as it is quite a unique situation that he is on amoxicillan and has been since birth. Is this something that you will have to continue to do always? Also what are they doing as far as treatement for the c diff? I will tell you the number one thing beyond caring for your son is protecting you and other family members if you have been on antibiotics recently yourself. There is a section on cleaning I believe under FAQ. I could be wrong. The only thing that kills c diff is 9 parts water to 1 part bleach. NOTHING else will kill it. Hand santizers will irritate it and cause it to be more likely to spread. I recommend using gloves for diaper changes and bleaching the table after every change. Also I wash my sons hands if he gets anywhere near the diaper area. The worst part of c diff is that it produces spores that can live up to 2 years on surfaces. So everything you touch or he touches after being near the diaper area can transfer spores and it can actually reinfect a person later down the line. I hope this is somewhat helpful. I would be more than happy to give you more info but not sure exactly what questions you have. Again my prayers will be with you and your son!
Amanda

[Nancy1]

lvmyliberty,
Welcome to the group that no one wants to join, for you and your son. Be sure to read All Users Read This First, Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all areas in FAQ that interest you.

Whew, you surely have been through a lot with your baby! Poor little guy! He must be tough to have survived so much. And now cdiff too... It is bad enough to have cdiff as an adult. I can't imagine having to watch your beloved little child suffer with it. There is info in the FAQ section about children, including infants, with cdiff. Good luck. Let us know how it goes.

[Bobbie]

Lvmyliberty,
Sounds as though you & your son have been through a lot.

Explore the areas on the site that Nancy mentioned. I hope your son is seeing a ped. GI or an infect. disease doc.

My son had C. diff. twice (lst time at 4 yrs. of age in l979; he was on Amoxicillin). I've also had it twice -- many years later. It is becoming more common & is often linked to antibiotic use. See FAQ-Antibiotics. Perhaps the docs. can replace the Amoxicillin with another antibiotic that isn't as big an offender as Amoxicillin. I would mention it to the docs. Not having a spleen does make one more prone to infections.

Most docs. chose to treat C. diff. with either Flagyl or Vancocin. See info. on the site on both under Treatments. Flagyl is less expensive but usually has more side effects than Vanco. -- which is "pricey." Check your insurance. In more recent cases, Vanco. is sometimes more effective, but that is a "doctor" call.

With your son's problems, you are probably already a wonderful advocate for him. Learn as much as you can about C. diff. & don't hesitate to question his docs.

Let us know how he is doing.

[klt03301]

Lvmyliberty...just a note to tell you how sorry I am that your son is so ill. You've gotten some really good advice so far. Please know that we are here for you, if nothing else, for encouragement. My prayers are with you, your son and family.

Karen

[Lvmyliberty]

Thought I would give a little update. The C-diff comes back negative in his stool. But if the doctors are right it caused alot of problems for Blake. He got sepsis a few days after I posted. He is still in the hospital but it wasn't looking too good for a few days. The doctors blame the sepsis on the c-diff. I know Blake isn't a healthy child and doens't have the immune system like the rest of us but who would have thought it would have caused so many problems???

[anlockwood]

Once again I am so so sorry you and your son are going through this. I can't imagine how scary that must have been for your family. I will keep you and your son in my prayers. Please do remember just as informational purpose that even though a c diff test comes back negative it does not mean that he won't relapse. I just want to be sure that you know so if he did start to happen to have symptoms again you could act on it immediately. I pray he has beat this and his journey with c diff has come to an end!
God Bless You!
Amanda

[klt03301]

I am very sorry to hear that your son has become so ill. I, too, will keep him, along with your family, in my prayers.

Please let us know how things go.

Virtual hugs to you (it sounds like you could use some)...Karen

[Bobbie]

Know this is a terrible ordeal for you and your family. Our best wishes & prayers for Blake & your family.

[Lvmyliberty]

Blake passed away on Jan. 21 from sepsis. We have no idea what caused sepsis the last time. The autopsy did not give us any answers. They believe his sickness at the beginning of Dec. started with c-diff. If I would have known he would have gotten so sick from being on amoxicillin as a preventive antibotic because he didn't have a spleen I wouldn't have had him on it. He was hardly sick and doing great up until that point. I hope everyone gets better. And thanks for the support I recieved!

[Nancy1]

I am so very sorry to hear that Blake died. The loss of a child I think is one of the worst losses we can have. (My daughter died, so I know something about this. If you want some info about grief support, please pm me.) My heart goes out to you and your family. Please take care of yourself. I am sending you warm wishes for peace, hope, and love.

[Suezer]

I am truly very sorry to read of the loss of your loved one. Although I dont know you, I will pray that you will have peace and strength in this difficult time.

[sks001]

Thank you for finally being able to post this horrific outcome. My heart just breaks for you. No-one should ever have to bury their child ... it goes against nature ... children are supposed to bury parents.

Please, please don't blame yourself about the amoxicillin. It's the doctor's responsibility to treat using "do no harm."

Sepsis is more often fatal in someone with an already compromised immune system. You probably already know this ... it is caused by a bacterial infection (which C-Diff is) that can begin anywhere in the body. like the colon, kidneys, bladder, upper UTI's, liver, gall bladder, lungs, etc., even by abcesses. He could have gotten an infection in the J-Tube also. So difficult to treat because of trying to find the source, and even if found, so very, very difficult to treat.

I speak from experience as I lost my brother (not a child like Blake) to sepsis from both bladder and kidney infections which is the main killer of paraplegics. Transplanting one of my kidneys wouldn't even help as too far gone - went into septic shock and slowly, oh so very slowly, organs shut down one after another.

My thoughts and prayers will be with you as most people never get over the loss of their child. Please continue to post to let us know how you are coping. There are a lot of caring ears ready to listen when you are really down and feel like raging or venting.

Again, I'm so very, very sorry for your loss of Blake that was taken way too soon.

[TheVike]

My condolences..it was and all is in God's hands...Peace be with you and your family

[klt03301]

I am so sorry to hear about Blake's passing. I can't begin to imagine the pain and grief you are going through. I will keep your family in my prayers.

My sincerest condolences...Karen