HELP HELP HELP

[HEATHER ENGLESTEAD]

Does anyone not have the diahrea anymore but has other aymptoms from the c diff that they cannot get rid of?I am in desperate need of information!!! My son (10) had c diff in oct. 2009 followed by a relapse. He does not have diahrea anymore but cannot get better. Fatigue, muscle/joint aches, and cramping in the stomach. We can not find a doctor that knows. They diagnosed him with functional bowel disease which they think was caused by the infection of c diff and damaged nerves in his stomach. Come to find out through my studies that is just a diagnosis they give you when they have ruled out everything else. Through studying c diff I found out the you can get reactive arthritis from infection also? Please has anyone experienced this or read about anyone who has? Please and now that it has been so long my son is now suffering from depression, thinks he will never get better and more than anything just wants to be a normal 10 year old kid!!!!!!!
Thanks!! Heather1122

[beth22]

I don't know about children, but many adults can get PI-IBS and/or SIBO. There is a breath test that you can take to check for SIBO. It is basically a bacterial overgrowth in the small intestine. I have it and it can be caused by having one infection, that even if cured, gives you this. The c difficile toxins can do this. Check with your doctor or a specialist. SIBO can cause fibromyalgia, which is muscle aches. It can also cause cramping and fatigue among other things.

[Nancy1]

Heather,
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.

I am so sorry that your son has been struggling for so long. It is hard enough for us as adults to deal with cdiff. I cannot imagine how hard it must be to have to watch your beloved little son suffer. Have you seen a pediatric gastroenterologist? They should know more about children and cdiff than other GI docs. Many of us have taken a long time to recover after cdiff.

This may not apply to your situation, but I got arthritis 2 1/2 years after recovering from cdiff. No one in my family has it and I don't have any obvious risk factors. My orthopedic surgeon did not think it is reactive arthritis, but I am not sure I believe him.

Good luck. Let us know how it goes.

[Vikingjeff28]

Yes, Yes and Yes. I have been battling for 18 months now, 6 relpases. My guts will cramp and burn(even when in beteween bouts of C Diff) so bad the doc gave me pain pills to take if I need to so I can work and valium to sleep. I take these when necessary. I describe it to others as if you had an "open wound" on your arm and poured alcohol on it. I pray your son gets better very soon and I am very sorry.

[Mommy23]

How terrible, I can't imagine any of my children suffering from this dreadful illness. I'm sure you feel desperate to get him the help he deserves.

I just saw a wonderful doctor, the one who actually discovered cdiff back in the 70's. He works out of John Hopkins Hosp. Anyways, I too have the arthritis and muscle problems mainly on my left side. He did mention reactive arthritis and said it is very rare but possible, so it is possible your son could have something like that. I also most likely have the SIBO. This may be something to look into with your son as well. The treatment for SIBO is abx which I'm refusing right now, I will probably try some alternative supplements. There are also tests that can be done, but apparently not very accurate.

It seems lately there has been much discussion about these post problems and the SIBO. We all need a break from this!!

Have your doctors suggested any type of supplements like probiotics or something for the pain?
Continue fighting for your son, if you're not happy with your doctors find another one, there are good ones out there.

[wildwind]

My CD started in August and stopped in January. I still have episodes of everything you describe. Although I had not connected the arthritis with the CD even though it did not start until December...I actually had to have all my rings resized larger due to arthritis even though I had lost a lot of weight. I still have bouts of fatigue, and abdominal burning/cramping that does not culminate in D but is bothersome. Depression, yup...and I am not a child. I would think this would be very difficult for a child to come to terms with all that can linger after battling CD.

As adults, we can communicate and reason with each other with our family or here for comfort, advice, encouragement; but a child would need special help I would think. If these are 'normal' side effects that will hopefully gradually ebb away, I would think you son may benefit from a counselor who may specialize in treating children with chronic illness' like childhood diabetes or similar. Obviously if I'm having a bad day, I can take a pain pill or a valium, but it doesn't seem reasonable for a 10 year old. Short term counseling may help.

I found great comfort in finally doing something I would consider 'normal' and special. For me that is the coast, for your son it may be flying a kite, or riding his bike. I was fatigued, and worn out, but what I could do made me feel like a million bucks! First I could walk only a couple hundred yards, then each day farther. I forgot for a few moments how sick I was/am. It really boosted my morale and depression, it did not 'cure' it, but it did help. It seems like endless trips to doctors and endless test that result in unspecific diagnosis only seem to deepen the feeling that life will never be normal. But getting out, feeling the wind in my face, listening to the ocean roar, now that I can get behind.

Please keep posting, we really care here, about what you son is going through as well as what mom is going through. There may be other moms and dads struggling to make sense of this too, you may be able to help them help their children.

God bless, Nancy

[debdee]

Heather,
I'm so sorry about your son having c.diff. I too have c.diff. I've been struggling with it for 7 months. I had the diarrhea when I was taking antibiotics for bronchitis, but after I had only one or two loose stools a day. Even though I've done treatments, taken flagyl, I've tested positive for c.diff 4 times. It seems that my body doesn't want to reject it or something. Anyway, I have the same symptoms as your son. I think it's the c.diff toxins when they stay in the system or something. If anyone else knows more about it, please correct me. I just know that doctors don't really know what to do if you don't have "classic" symptoms. That's the problem I'm running into. I have an appt. on Monday. I've never seen this GI before, so I hope it goes well. I hope he has some answers for someone who is not classic. I just know I have c.diff and I want to get well.
I hope you can find a good GI to help your son.
debdee