Lily's Case History

[Guest]

Hi Everyone: My daughter is five years old and has had four recurrences of C Diff. She was initially diagnosed after being given an very strong antibiotic for repeated ear infections. She has since gotten ear tubes and been fine as far as that is concerned, but has had the C diff now ever since. <BR> <BR>She's been on Flagyl three times and now Vanco one time. It appears to be returning and I'm terrified! My little girl also has a seizure disorder so is taking Tegretol three times per day. She's been through so very much, and this only adds to her pain. <BR> <BR>I'm so frustrated as her pediatrician appears to know absolutely nothing about C Diff. Her rounds of antibiotics have been only for 7 days. I've asked for more prolonged treatment and her doc says it would not make a difference! From my research I think it would! They also don't know anything abour probiotics. <BR> <BR>I have her scheduled to see a Naturopath next week, but in the meantime I don't want her getting sicker and sustaining damage. I'm so worried. Does anyone have an advice? Any reassurance that this nightmare will end! I thought the Epilepsy was bad, but now I just wish this C Diff would go away. We can handle the E! Help!

[Guest]

Well, we're still fighting the C Diff. Lily is now on Culturelle and still taking Vancocin. We're going to start pulsing today. Hopefully this will be our answer. She took Florastor for a couple of days, but seemed to make it worse. We're hoping that we find an answer soon, as it's not been since December 29th that she has had this problem! <BR> <BR>She did see a GI specialist, but he was not very familiar with C Diff, nor did he return calls or seem interested in helping us get rid of this. <BR> <BR>This site has been a wonderful help, as I have used a lot of this information to get help from her ped. We're hoping we're on track to get this fixed. She's still got very green looking stools and is not back to normal, but we will keep hoping....more soon.

[Guest]

We're still pulsing her Vancocin. She's on the third time of four days on and two days off. After tomorrow we start the three days on with two days off. It's going well so far. On her days off her stools are softer, but she's doing well. We're hoping this will continue. We've almost totally cut the sugar out of her diet hoping this will help. The days she is on Vanco she is allowed a low sugar (4g) popsicle and she adores it. This low sugar is not only good to fight the C Diff I feel, but also good to reduce seizures! Thanks everyone and I'll keep you updated.

[Guest]

Hi everyone: <BR>We ended her Vanco in August after pulsing it. We followed the pulsing regimen to a certain point, then had to change it up due to increased seizures. <BR> <BR>We have continued her low to no sugar diet and she is doing well. We've seen some more seizures, but she has had Strep Throat and other illnesses from school. <BR> <BR>She's doing quite well with her gastro issues and we're praying she is done with C Diff. She continues taking three Culturelle per day. <BR> <BR>We're hanging in there. I have health issues going on, but other than that - my Lily girl is doing much better. I'm keeping my fingers crossed and knocking on wood that all remains that way. Thank you all and talk to you soon.

[jenpriv]

Hi All: I just wanted to check in and let everyone know how Lily is doing. We've not seen any recurrence of C Diff. She has had a couple of instances where it looked like it had returned, we upped her Culturelle and made sure her sugar intake was very low and she bounced right back, thank goodness.

I've got to say that she's been C Diff free for some time, but I am still so very afraid of it! It was such a long, painful battle for her - I still watch her stools every day. I'm hoping that this fear will become less and less and someday it will not be a concern.

She is on new seizure medication that she takes twice per day, rather than three times per day and she is a happy 2nd grader! She had some seizure activity in June, but we hope that this new med will be our answer for total control. It would be lovely if our next choice would be whether or not to remove her meds due to being 2 years seizure free! I SO want that choice!

My health issues have evened out and we are all hanging in there. I'm so proud of my little one and grateful for this site. I will continue to check in and try to offer the support that you all have given us. Thank you!

Jen

[jenpriv]

Hi Friends:

It's been a while since I've been here - but I often come back and lurk to see how everyone is doing. I thought it was time I checked back in and let you know how Lily is doing!

Lily is now an energetic, beautiful, thriving, 8 year-old, fourth grader! It's been a couple of years now and C Diff has not reared it's incredibly ugly head again. To tell you the truth, I am still gun shy. I still watch for it and STILL get nervous when Lily comes down with any poopy problems. She was pretty young when she had it for over a year - and she still remembers and has fear associated with it.

Regardless of that nightmare - she's doing well. Her last seizure was on September 27, 2006. (Fingers crossed, knock on wood) - We are praying that her medication is working well and keeping them at bay. We continue to pray that she will be one of the 70 percent that grow out of them. That would be a real blessing. My little one has been through so much in her short life - I hope that she has some smooth sailing here.

I want to extend another warm thank you to you all for the support and information I received here. Without this site, I have no idea what would have happened to my angel. It was with the pulsing regimen (tweaked a bit by me) that I forced upon her doctor - that cured her! You all are our angels!

I will check in again and continue to be here if anyone needs me. Blessings to you all and I pray that C Diff will leave you all alone forever!

Love,
Jen