Lily is Free from C Diff - It's been a while now!

[jenpriv]

Hi Friends:

I just updated Lily's case history in the other thread, but noticed this section and wanted to give some hope to some of my friends out here who are still battling C Diff.

Lily had it for over a year. It exacerbated her Epilepsy and made our lives very very difficult and scary for over a year. We tried Flagyl at first for her and she hated it. I didn't understand her reticence until I tasted it one day. UGHGHGHGHGH!!! No more Flagyl after that!

After her fighting C Diff for over 3 months, we switched to the ever expensive Vanco. The cost was out of this world - but it helped. We had to experiment with a variety of regimens - but found that a combination of Culturelle, low sugar diet, pulsing Vanco did the trick after almost a year and a half.

We had a heck of a time finding a doctor who would support us. There were few, if any, that knew anything about C Diff, much less C Diff that hung on for over a year! I found a ped that finally supported MY plan for pulsing that I got from here. I tweaked it a bit as we went along. It was a very long process and with support from everyone here - we made it through.

She has been doing very well. She's now in 4th grade - is 8 years old and thriving! I don't know what I would have done without this site. I truly feel it saved my daughter's life! She was so so ill, and it was making her seizures even worse - it was terrible. You are all a real blessing and I wanted to share our success story.

We still fear it - I still get nervous when things aren't quite right, I guess that will stick around for a while. But I'm so very grateful that she is doing so well. Thank you all and just know that there is great hope for a life free from C Diff!

Love,
Jen

[Bobbie]

Jen,
Am so very glad that Lily is doing so well & glad the site helped you. Your story is a real inspiraton -- esp. since Lily had other health issues besides C. diff.

I have a grand daughter named Lily --love the name. Give your Lily a hug from us. She is an exceptional little girl -- & has a wonderful, caring mother.

We all get "nervous" with "bad" days. You are not an exception. That is why we call C. diff. "the gift that keeps on giving." And you are right -- few docs. know a lot about recurrrent/relapsing C. diff.

Thank you for posting. So many don't bother to contact the site after they are "well." Thank you again for being an exception. It makes working on the site worthwhile.

Our very best to you & your family.

[diane]

jen,
It is so nice to see you on.. I am soo glad Lily is doing so well. That is great news........ It is so hard when we have our children suffering , especially with something that doctors aren't sure what to do... Well I am really glad!!!!!!!!!!!! How are you doing? pm me if you want

[HEATHER28]

Jen and Lily
What a wonderful story! I am so glad that Lily is doing so great! I dont have children. I didnt think that I was going to make it when I had Cdiff I cant even begin to imagine what it is like for children. Her story just go's to show everyone suffering from this awful illness that there is light at the end of the tunnel and that's WONDERFUL!

Best of Luck to you and your family!

[jenpriv]

Thanks Bobbie, Heather and Diane:

It's good to check in. I know how important it was for me to read about everyone's experiences, successes, etc. You all were my lifeline - and I'm convinced that the pulsing regimen I found on her saved my baby girl. The doctors sure didn't know what they were doing! Bless the one I found that was willing to try something different than the regular protocol!

Diane, I'm doing okay. I've been diagnosed with Rheumatoid Arthritis, Diabetes and Fibromyalgia this year. It's the beloved Trifecta of illnesses! I've gone through almost every RA treatment with no success - or they're too costly. Now I'm on Prednisone only - along with pain meds. I'm waiting to get some new insurance to look into more alternatives. Ugh! I'm on the South Beach diet to keep my blood sugars down. It's working pretty well!

So all in all - we're hanging in there. We're moving to Utah soon from AZ. Got a home on Utah Lake! I'm so excited. Lily is really doing well - been off the past couple of days due to the stress of moving - but she's a real trooper. :)

How are you all doing?

Hugs,
Jen

[L.S.]

Wonderful! God Bless her.

[diane]

Jen,
wow have you had your hands full.. first with Lily and now you. wow.. I remember following Lily's story when she was so sick and how hard it was for you and I am so glad she is doing so well and is thriving.. HOw old is she now? I have had my ups and downs.. I am greatful my cdiff finally went away after over 3 years and lots of trial and error with medicine! I still have some reminders.. I can deal with anything since having that awful disease! Utah that sounds really nice... I hope you have a great move and keep me posted how things are going and how your move goes

[jenpriv]

Thanks Diane! Lily's now 8 years old already! She's in 4th grade this year. Her C Diff was occurred when she was in kindergarten and 1st grades! I can hardly believe it!

I'm glad you are doing pretty well. Hoping that your health continues to improve.

We are leaving next Wed for Utah! Our condo has sold, as has my mom's. I'm very excited! We've been doing so much lately - Lily just got over a bad case of Strep and the stomach flu! No seizures though - thank goodness! She's been doing quite well - I'm so happy!

Thank you again for your support and compassion. I hope you have a great week. Let me know how you're doing also! :)

Jen

[diane]

Oh my , time sure has flown by. I remember when she was so sick. I am glad she is doing so well and thriving. They grow so fast!!!


Utah, that should be a good move? Are you excited? How about Lily?

I am doing well! I still have an occasional bad day or two.. But what are you going to do. I'm just glad after a3 years and a couple months that it is gone.. I am a fanatic on handwashing and germs now though.

Please keep in touch and pm me any time ...