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N.C. asks from Longmont, CO on March 19, 2008

9 Mo Old with C-diff Colitis, Advice Needed

My 9 month old boy has c-diff colitis. Started this week off with bloody stools and it's just been downhill since there. We start antibiotics today, they are starting him on the strongest available tho?? Also, this condition normally comes from being on antibiotics, but he hasn't been, nor has anyone in our family. They are telling me we should wait and see if we have more problems before going to a pediatric GI specialist, but personally I feel like it takes sooo long to get into a specialist anyway, that I should get the ball rolling?? Thanks for reading and I really appreciate all your advice.

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So What Happened?™

First I want to thank everyone for their prayers and advice. We now know that Bryce has two bacteria attacking his colon, C-diff colitis and campylobater jejuni. He also developed a third infection in his respiratory system. We are now on day 11 since the symptoms set in and are still having problems, but he improves everyday. I'll give you a rundown of what we've gone thru so in case any of you have symptoms like these, maybe it will help.

Day One, we had a cpl of diarrhea diapers, the third one had a nice size blood clot in it. Bryce was running a low grade temp. We took a picture of the clot and saved the diaper, which proved very useful later. We were able to get into our docs office fast. He first suspected colon irritation from dairy proteins and switched us to Alimentum and no baby foods with cheese. We took his next stool to the lab )it had blood and bits of clots all thru it) and had it tested. While there our doc had us get his blood work done. His blood count was high.

Day Two, the stool culture showed that he had Clostridium Difficile Colitis. This is normally something you could get after taking antibiotics, but it can be spread person to person. They have a lot of probs with it in hospitals and nursing homes. In our case tho, no one in our household has been on antibiotics. Bryce had no BM's this day but ran a fever and the respiratory probs set in. His antibiotics to treat this were hard to find and had to be specially made (because of his age?? not sure why).

Day Three, the culture showed campylobacter jejuni. This is a type of food poisening and is more common than salmonella (tho I had never heard of it). It is typically caught from raw chicken. Also comes from raw milk and feces. It is highly contagious. That threw up a red flag for us. 5 days before the sypmtoms set in we had been at the zoo. We had a picnic by the carousel and Bryce had grabbed a fresh piece of goose poo. His contact was minimal, but I believe this is where he became infected. The Boulder County Health Dept. believes that would explain the campy, but not the c-diff. I still disagree. We have a close friend who is a vet at the zoo and I know the infirmary there is full of ducks suffering from botulism, thus they would be on antibiotics, and they share their water sources with the geese/peacocks/squirrels etc. all those fun little critters that shed their poo all over the zoo. Anyway, that's just my thought on it. We started Bryce on flagyl for the c-diff and zithromax for the campy. They said the zithromax would also help the respiratory infection. Bryce was still showing blood in his stools and running fevers up to 103.

Day Four, Diarhhea got worse, we still had fever and he was having trouble breathing. He became lethargic a lot. He'd crawl 3 steps and lay down, breathing and wheezing. We had a lot of probs getting him to eat or drink anything. This was our worst day of it, felt moments away from rushing him to Children's, but I know if you can it's best to keep them out of the hospital. Especially with his immune system so comprimised.

Day Five, he had a good morning and finally would drink something without forcing him to. Fever stayed 101 and below. Diarrhea was horribly dark green, impossible to tell if it had blood. We started him on a nebulizer to help his breathing at night.

Day Six and Seven, no significant fever. Only a cpl diarrhea bouts, still dark. His breathing improved and he actually wanted to play a little.

Day Eight and Nine, no fever but the diarrhea got worse tho the color improved. No breathing probs but he was very fussy again.

Day Ten we saw a pediatric GI specialist. He wants to do a colonoscopy. Not exactly what I wanted to hear but atleast we'll know for sure how it's going. He says Bryce should be symptom free by this time. Bummer.

Day Eleven, Bryce still has diarrhea but his second and third diaper this morning had some consistency to it! He's not quite as fussy today, I think we're finally getting somewhere :)

I'm thankful for all the advice to keep pushing the docs and get to a specialist, it really helped me feel like I'm doing the right thing. My sis said it best, I am my babies voice.. and I am loud :) I've had the oppurtunity to speak on a more personal basis about this with some of you who are having the same probs, and I'm also thankful we have a doctor who didn't just assume what it was, he ordered tests right away to make sure. I would hope we all push our docs to do this if they don't on their own. I now know that if there is bright red blood in their stool it is more than likey from their colon. If it's clotted, that is a better sign than just runny diarrhea and just blood, in that case you would want to rush to the ER immediately. It could signify a hole has formed in the small intestines.

My best advice back to you, never picnic at the zoo for one :) lol! Always carry antibacterial wipes, not just baby wipes. And never be afraid to drive your doctor nuts with questions or to get a second opinion. I'm so glad I did! Thank you all again. Keep us in your prayers, tho I feel he'll pull out of it fine, can't hurt!

Featured Answers

S.F. answers from Salt Lake City on March 20, 2008

I would make the appointment. So what if you come across as an paranoid mother. Even if you went into the GI and it was nothing, at least you would feel like you did everything you could!! My son sees a GI and he's usually booked back for 3 months.

10 months ago my son was having eczema that I thought was something more, but yet I did not do a thing about it because of advice from his Ped. 9 months ago he was hospitalized for it, and it ended up being malnutrition due to not absorbing his foods due to allergies(long story!). I have to look back and realize I did everything I knew...but I now worry about everything, I'm his Mommy and the only one able to protect him. If you feel there could be a problem, make the appointment and then cancel if things resolve before you get to the appointment. Good luck!

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S.F. answers from Salt Lake City on March 20, 2008

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V.M. answers from Fort Collins on March 20, 2008

Nicole,

I would strongly urge you to type in c-diff colitis and read up on the internet. Just because your child is on antibiotics does not mean this will be wiped out. The spores from the bacteria can live up to 2 years and re-occure. Seek advice from a very seasoned colon therapist, naturopathic doctor and work with some alternative treatments because your childs body is going to need some natural support not to have all it's natural flora wiped out which antibiotics do. You can put your baby on a good probiotic, powder form, example: Intestinal Care DF acidophilus and bifidobacteria plus FOS blended in a non dairy powder, 25 billion live cells per 1/4 tsp. Vitamin Cottage carries it and check with them about it's appropriateness for a 9 month old. Yogurt gives the live cultures also. Maryann Mehrman in Fort Collins is an excellent resource. Essential fatty acids are very helpful for healing the colon and these come in liquid form which can be added to your childs food, flax oil, cod liver oil, fish oils-all the natural organic oils will help in healing of the body. Good luck and read a lot.V.

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R.H. answers from Denver on March 20, 2008

N., look online for the nearest chapter of the Crohn's and Colitis Foundation of America (CCFA) ...CALL THEM, CALL THEM, CALL THEM...they are THE resource for doctors, nurses, comforting solutions, research... they are bound to have support groups, all sorts of information immediately available... and don't worry, you'll find your way
Roxie in Denver

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B.R. answers from Provo on March 20, 2008

Hi, being a mother of a little girl who had a lot of weight gaining problems I have to agree with you it will take a while to get into the Dr. that you want and you can always cancel the appt it the problem goes away. I would make an appt. today!!! Hope this helps and I hope your little guy get feeling better!
B.

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C.H. answers from Denver on March 20, 2008

C-diff is very serious. A few years ago, my sister had a severe case and was hospitalized and almost died. I would definitely look into seeing a specialist. Besides taking antibiotics, this is something people often catch while in the hospital for some other reason. It is highly contagious also. I will say a quick prayer for your son. I hope he's better soon!

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R.M. answers from Denver on March 20, 2008

So sorry to hear this about your baby!! Always follow your mothers intuition. Don't let anyone say that you are too over-protective. That is our job as parents isn't it. I really don't have avy other advice than to go ahead and set up that gi appointment and you will be that much closer to the right answer. Also go to a nutritionist to see if that will help.(whole foods)

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J.L. answers from Pocatello on March 20, 2008

Definitely take your son to a pediatric GI specialist. In dealing with many doctors over that past few years and my husband being in a medical field I have finally realized that if you have a specialized problem you need to see a specialist, even if the problem isn't that uncommon. For example, pediatricians usually prescribe the wrong antibiotic for pink eye even though it is a very common childhood ailment. Set up an appointment with a specialist sooner rather than later. If this treatment works you can always cancel the appointment. Also, the fact that he hasn't been on antibiotics and that is the common cause is something that should also be checked out.

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P.D. answers from Denver on March 20, 2008

Hi I am a mom and RN and my advice would be get the ball rolling as it takes forever. Childrens Hospital is wonderful but you can wait monthes to get into a specialist. Worse thing is you cancel the appt. However you may want to consult with them anyway to see why this happens and how likely it will reoccur. Once they know you you can call them direct and they can advise you. I donot know much about peds and how easily kids get c diff. It is really rampant in hospitals. P. dybinski

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R.T. answers from Denver on March 20, 2008

My dad has colitis, so I know a bit about it. From what I know, I would advise getting into the specialist as soon as you're able. I think your instincts are right on this, and that you should do what you can to advocate for the health of your little one. Also, I'm not sure of your insurance or financial situation, but the Mayo Clinic is very strong on GI issues and saved my father's colon- literally- when he was 35. If you can manage it, I'd recommend getting a consult/2nd opinion there.

Good luck; it's so hard when they're sick!

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L.H. answers from Colorado Springs on March 20, 2008

As a mother of three I say go with your gut. Don't wait. Most insurances allow you to self refer. I always get online and do a little research for myself, if your doc doesn't like this get a new one! Your little one is to precious to be "sent through the system". God bless and remember no one knows your child like you do!

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A.F. answers from Salt Lake City on March 20, 2008

Nicole my son had c-diff when he was 4 months old. He had never been on antibiotics and had never been in the hospital. C-diff is a bacteria that is actually naturally occuring in your colon and when it gets out of control is when they give antibiotics for it. I did schedule an appointment to a GI but was able to cancel it as the medication worked. My doctor's nurse said her grandson had to have two doses of medication for it to work but it did eventually get rid of it. I would suggest to make the appointment just for ease of mind and then start the medication. Then take your son in soon after the medication is gone to test for it again. My doctor was concerned about weight gain so I did have to take him in once a week for weight checks which they did for free. Since my son was on the medication it has not come back. Good luck, it is really scary but will soon be over.

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S.K. answers from Denver on March 19, 2008

Here are a few thoughts. Ask how long it should take for him to improve on the antibiotics. If he doesn't improve in that time, definitely go back and ask if your son's condition could be something other than what the doctor diagnosed. If the doctor isn't responsive enough, then I would definitely seek out another pediatrician, without waiting.

Even if you like your current doctor, it may be important to get a second opinion. If you think he should go to a ped GI specialist, then it may well be best to follow that instinct and pursue help there, even if the doc doesn't recommend it.

Another thought - I just read the book "How Doctors Think" which is fantastic. I would recommend it to anyone who is a doctor or a patient, or who has a family member who is a patient... just about everybody! It's very enlightening about how frequently doctors misdiagnose people and why... definitely could be relevant to your situation.

Best of luck, and I hope your son feels better soon!!

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S.H. answers from Salt Lake City on March 19, 2008

N., Get to a GI as soon as possible! My dd had c-diff when she was 1 and we darn near lost her. I often wonder if we had gotten her to a GI if things would have turned out different. She had been sick for over a month before the stupid dr's figured out what she had. By that time she weighed barely 14 pounds. The antibiotic they put her on, metronidizole, worked wonders but I still wonder what it did to her insides. We had to be careful who she came into contact with for about a year because her immune system was so compromised. She was such a little tiny thing that I had to buy her 6 month clothes just to get them to fit. Bear in mind that her daddy is over 6'4 and I'm 5'10. She shouldn't have been so little. THEN they told us to watch her for any sudden, large growth spurts because they could be hard on her frame. Comforting words coming from professionals! She's now 9 and in the past 2 years has literally SHOT up and out. She weighs abou 140 lbs and wears a size 16 pant and is the tallest girl in the entire 3rd grade. We have had to put her on a careful diet and watch what she eats, and when anyone in the house gets sick, she REALLY gets sick still. I still have nightmares about all that we went through. I would love to hear about what you find out and what the dr's tell you. If you'd like to talk more, just send me a personal message and I'd really like to hear what you do. Good luck, but don't wait. I really think this c-diff affects them for a long time. It could just be me, but I feel really strongly that my dd would be different today if she hadn't gotten it. BTW, we have no idea how she contracted it either.

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