Amanda(anlockwood) and Baby Bryton

[anlockwood]

So my story began like many others has, with the use of clindamycin. I had a sore on my leg that wasn't clearing up and it kept getting bigger and more painful and didn't look like any other sore I had ever seen. So finally I go to the dr. He doesn't culture it but says it is CA-MRSA and puts me on clindamycin. Mistake number one, if I knew then what I know now I would have insisted on a culture. I actually did fine on the clindamycin, had soft stools but nothing bad. I had a 3 month old at this time. Fast forward a month I decided to return to work and put my son in daycare. He was 4 months old, I believe. He picks up a nasty cold and shares it with me. I felt like death warmed over. I could barely breathe. Went to the dr and they put me on Biaxin and Steroids. Immediately I get so sick to my stomach I feel like I could die and start having some D. I call the dr and tell them what is going on and I am concerned about c diff(thats right I said c diff to them) and they said nope wasn't that not to worry and instead start taking amoxicillan. Well I get even sicker so next day I go into the dr and tell them once again I think it may be c diff. He insists no way refuses to do a stool test and tells me to take the antibiotic. So I do. By 1 am the next day I have D so bad I am in the bathroom 7 times in less then an hour. I go to the er. He assures me he is 100% sure I have c diff based on symtpoms and on the antibiotics I had been on. Puts me on a 7 day course of Flagyl(not nearly long enough) and sends me home. Please also know my husband was deployed during this time and I had no help so I literally was up the whole night at the er went home and got my older son to school and took the baby to daycare. Was so sick and went back to the er. Here they give me lomotil. Thats right, lomotil. I even said to the PA I thought you aren't supposed to take anything like that with c diff and she says no its fine. So that completely stops the D for 2 days. I didn't go at all. I didn't think anything of it because the PA said it was fine. So here comes Wednesday night and I get terrible terrible abdominal pain. I felt like I was going to die. I decided to drive myself to the er with my two boys. I got about 2 miles down the road and had to call an ambulance. The pain was beyond excruitating and my heart was out of whack and I had an extremely dry mouth. I had to leave my 4 month old and my 8 yr old in a parking lot with police to wait for my mother in law while they rushed me to the er. By the time I got there I think all the jumbling around in the ambulance got things moving again and I was able to have a bm and pass some gas. I think had this not had happened I would have had toxic megacolon. So anyways things were ok and I went home. Once again night from hell. During all of this my 4 month old was still sick. At this point I was so sick my brother came to stay with me. He helped alot. My 4 month old was then diagnosed with an ear infection and put on antibiotics. No one told me I could give it to him. No one ever said anything about reinfecting myself or someone else. His ear infection would not clear up so the put him on another antibiotic and it would still not clear so they did rocef(sp?) shots. Sure enough he started with the D. By this time I was educating myself. I pushed for a test to be done. It came back positive and he was started on Flagyl too. Horrible horrible medicine to give to a baby. Causes an automatic gag reflux. He would throw it all up. Ended up in the hospital for 2 days with him. They wouldn't let me hubby come home so I juggled this and being sick myself and caring for my 8 year old. It was pretty close to hell. We both started Florastor and he came home and started to improve. I was done with my flagyl and was left with IBS. He came off of his and did great. I hit my 70 day mark and so did he. Unfortunately at 73 days he got a stomach flu. The D started that same day. We did another test for C diff and it came back positive. The stomach flu caused vomitting and the flagyl was so terrible anyways he did not keep it down. So drs said no meds for 5 days. He went untreated with c diff for 5 days. He was 8 months old at this point. We ended up in the er to get fluids and are sent home. We try flagyl again and he vomits immediatly. I insist we try vanco and finally dr agrees. He loved it. Went down like a charm. He looked at us like thats it?? Thank the lord for this med. Within 3 days stools look good. We are doing a slight taper of 100 mg/4 a day for 2 weeks, then 3 times a day for a week and then 2 times a day for a week and hopefully it will be gone this time. It has been along road but we made it through by the grace of god. I believe all of this has happened to draw me closer to God and it was a definite test of my faith. I hope we will all beat this and it will become a distant memory. My guilt through all of this is that I passed something so horrific onto my baby and he will have to deal with this the rest of his life. It really tears at my heart. I will update how he does. We are shooting for the 90 day mark this time. 70 didn't mean much in his case so 90 sounds better!!
Amanda

[anlockwood]

Just wanted to update all the fun stuff that has been going on.

Bryton is doing great! He is now 18 months old and for the most part his stomach has returned to normal! He is a healthy happy toddler. We do our best to keep him away from other kids who may be sick and will continue to so that he has the best chances of never having to deal with this again. He is now 9 1/2 months post meds.

I myself have not been so lucky. I had multiple issues with my teeth in the past 2 1/2 months. At this time I have had 2 root canals and 3 teeth pulls. The last root canal started in with pain 24 hours afterwards. I tried to wait it out but it continued. I call the endo and he said I absolutely had to take antibiotics. I told him my history and he said there was no other option. I started with penvk which I hadn't had since a kid because I get extreme nausea with it. Sure enough after only a few pills severe nausea and then D set in. My dr switched me to z pack and said to start flagyl right away. At this point I was up to going 7 times a day. I started the Flagyl and continued the z pack but felt like complete death. It was like the past year had been completely undone. What a way to celebrate a year anniversary off meds. Anyways went back into dr because literally felt like I wasn't going to make it. She said I had to get iv fluids and toradoll(only safe med to use for pain with active D as she put it). I had to leave and go to endo first because tooth still hurt and then come back. Could have punched the endo in the face when he said stop the antibiotics I don't think you ever needed them! GRRRRR! Same day I had to go back and get the freakin IV. Dr switched me over to Vanco to see if that helped and it did. What a blessing. I went to my Gastro dr to see how she wanted to proceed as I am also scheduled to have my gallbladder out. She put me on a 6 week taper because this is a reoccurence she doesn't want to chance a relapse. She said I should be fine to have the gallbladder out. Well fast forward a week and the same root canal tooth and one I had done a few months earlier are both killing me. Yesterday I went back into the dentist and had them both pulled. I am done messing around with it. I will just get replacements. I am supposed to have my surgery this Thursday God willing. I hope my teeth do okay so that I can. Will let you know how it goes and how the taper goes.

[anlockwood]

Well I had my gallbladder removed as scheduled. The actual surgery went fine. The 3rd day afterwards I began with loose stools and the smell of c diff returned even though I was still on 4 125mg vanco a day. They didn't know if it was from c diff or from gallbladder removal so they tested stool. I turned in a stool sample the following evening. By the 3rd day I was so sick I couldn't function. Every sip of water I took in came out as D with in 15 mins. I ended up in the ER and then the hospital for 3 days. The stool sample was positive. They up'd the vanco to 250 mg. This got it under control within a few days. I went home and did well. My gastro has decided I should do the vanco for 2 weeks with a chaser of xifaxin. My husband is out of town this week so I will chase it next week starting Monday. I am not feeling well right now. The last couple of days I have had frequent BM's, terrible nausea and have ate nothing but rice. I will probably have to go in to see the physicians assistant at the gastro office tomorrow. I feel pretty miserable and can't figure out why. I just wish this rollar coaster would end and things could get back to normal. I keep telling myself the saying this too shall pass but on these bad days that seems inconceivable.

[anlockwood]

First off, Happy New Year to everyone! It has been way too long since I last updated and so much has happened since then. I did take the Xifaxin chaser and felt better on it then I did on the vanco. It worked and I went 14 months of no c diff. Have been fighting a yeast infection of the skin and topical treatments weren't working. My dr prescribed 7 days of diflucan. I was iffy about it but called the gastro dr and she said shouldn't cause any problems so I went ahead. Started on Friday night and by Sunday things went downhill quickly. I stopped the diflucan and called the gastro Monday. I could tell they didn't think it had returned as they tested me for all things. Tuesday I thought I was doing slightly better when the doctor called to say the test was positive. She called me out vanco and is referring me on to a id dr since she feels this shouldn't have caused a relapse. I tried to let my body fight it but by Thursday things went downhill and I had to start the vanco. Admist all of this I have been fighting a sinus/brochitis infection. Not to be gross but more green stuff then I have ever seen in my life and felt as though I was dying. However after a week of it I think I am beating it so just goes to prove that antibiotics are pointless for most things even if you see the green! I think this paired with the relapse caused my body to be beaten down cause 2 days after starting meds I got really ill with the c diff. Had a really bad day and morning and the vanco seemed to gain control again and things are more normal again tonight. I am on 250 4 times a day since I relapsed last time on 125 4 times a day. I am living my life and refuse to let c diff decide my path! I will continue to make plans and live my life and won't give it power through my worrying!


Update on Bryton is fabulous! This boy has gone 2 years now with no antibiotics and therefore no issues!! Wahoo!! He is a healthy happy and almost 3 year old now.

[anlockwood]

Seems like it has been months since I last posted with all the things that have occurred. Went to an ID dr and he was wondeful. Explained a lot. He did testing on the quanitity of my immunoglobulins. One subclass came back low but apparently is not affecting the c diff. Sent me to the University of Iowa to have testing done on the quality of my immunoglobulins because you can have enough but it not be a quality. Took a road trip to find out they didn't feel that was key in this based on not having other infections a lot througout my life and didn't do further testing. However, they kept asking a lot of questions about wheat and I had no idea why. About 7 months prior I had been referred to the University for Spincter of Oddi Dysfunction. They had run some extra tests that I didn't realize while I was there. Come to find out I tested high for Celiac Disease. No one ever called me and these drs informed me of those results. They repeated the test and added one specific to Celiac and they came back even higher this time and the specific test said I was positive for Celiac Disease. So for the past week now I am gluten free and will remain for the rest of my life. I have no idea how this will play with my cdiff or if it is the reason I relapse so easily. The ID dr had also recommended a stool transfer. Come to find out my Gastro dr here does them. FABULOUS NEWS! Even better my insurance covers them no questions asked. We have been working for 3 weeks trying to get everything lined up. In the meantime I did a 2 week course of vanco followed by a 2 week course of Rifaximin. 6 days off full blown d with m. Sent in test yesterday and started back on vanco. I will stay on this until my stool transfer the end of this month and hopefully whoop this thing again! Its not a matter of if, only when because I have no doubt I will beat it!