Erica M

Erica- Thank you for sharing this with us. Can you give more info. on how you got c-diff and why its become recurrent? How are you now? Did you do lab testing through a dan doctor or a lab like Quest? My dd9 had 3 c-diff infections. First one in 06 was treated with flagyl, second one in 07 was treated with Vancomycin, and third one in May treated again with flagyl. Melinda Sure,, glad to help. I had a C-section in April of 2008. Shortly afterward, I developed a kidney infection and was given a broad spectrum AB. Im not sure which one it was though. Id say it was a few weeks later I started the 50 bathroom trips a day. I went to the hospital thinking I just had a stomach bug. I was told it would pass. Grayson developed similar symptoms but his passed, which made me believe it was in fact a bug. After a while, C.Diff took its course, couldnt digest food, fever of 103. etc. I went back to the doctor and was sent to a GI specialist. Unfortunately for me, he was taught that only ppl in nursing homes get C.diff (right...)He did treat me with flagyl for a week though, to no avail. So it went on for a long time, Im sure thats why it became recurrent. One morning at 4 am I got out of bed, lost control of my bowels and passed out. My husband called 911. I had a fever of 103.9 and the BP of a corpse. After being seen in the ER by their gracious doctor I was told I had a stomach bug. ..... My nurse happened to be from the infectious disease floor. After I came out of the bathroom, the nurse had brought the Dr back in and informed him that she didnt need a stool sample to know 100% that I had C.diff. (For those that do not know- c diff stools have a very distinct smell. Ive youve ever been in a barn or horse stock, thats what I compare it to. Also, once youve had it a while, your stools pretty much become puss and blood, graphic Im sorry) He informed her that Id had a stool sample done recently, but she fought for me and had me give her another that she ran down to the lab herself. Ta-Dah- positive. Since Id been on Flagyl a few times with no relief I was given a script for Vanco. At the time I had crummy insurance that would not pay *(vanco pills are very expensive) so the pharmacist recommended drinking IV Vanco which was alot more affordable. It took a month before I really felt better. I have had several flare-ups(6+) and every time Ive done the IV Vanco. Im not 100% that Grayson had C.Diff but once youve smelled it, its unmistakable. Im just glad he fought it off well. I was in pretty bad shape after a c-section, colicy baby, and then a kidney infection. I think all of those played a part in the severity and recurrence of the infection. I was warned however, that should I really need strong ABs one day that they may not work because of the repeated Vanco use. But- Im pretty sure I would have eventually died without it though. I know theres alot of antibiotic related C.Diff out there. However you have to fight one monster at a time. Gray and I both take Probotics and vitamins, extra vitamin C! I had stool testing done at a few different facilities and the actual GI specialist was the one I would have thought would know how to test properly. But no, it was a nurse in the ER. The most important thing I can tell you is in order to start treatment as soon as possible and avoid the ###### I went through is-- Make sure the stool is tested immediately! No bring in back in the containers in the morning, has to be fresh

I actually drank the Vancomycin in IV fluid form to treat recurrent and ugly C. Diff infection. Worked great, tasted terrible though. Also, for anyone wanting to test for C.diff, you have to make them take the stool sample to the lab immediately. I am a veteran and this one I know all too well about. C. Diff by definition is "difficult to culture". The cells they need to test die off very quickly and not all medical staff seem to know that. It took an infectious disease nurse to get it right. Hope that helps anyone dealing with it!

Nancy- Some of the things you said took me back a couple years....Although not uncommon, Gray has had GI issues from birth, including very severe colic, he is lactose intolerant, (all dairy), chronic constipation, for which hes been hospitalized several times. Strangely enough he had a red rash on his face and still does from time to time, which I assumed was from his strict soy diet. Gray also picked up Colostridium Difficile (sp?) from me at 3 months. My home is very clean but somehow he got it. I had a severe kidney infection after my c. cesection in April and was treated with a broad spectrum ab- ta-dah ! C-DIFF! Luckily Gray beat his quickly. Mine went on for 6 months. I eventually was drinking IV Vancomycin (I dont recommend it). Gray also has a Very bad case of Keratosis Pilaris (Bumpy build-up of Keratin plugs in hair follicles) that responded to the antibiotics as well. The redness anyway. Hes always had something going on but I never connected any of his illnesses with his neurological symptoms. I was always told he "just has a virus". I actually had one Ped tell me that its normal for some kids to be sick or have a virus most of their life till theyre like 5??!! However, for all his issues, Grayson is 3 1/2 feet tall and weighs 36lbs at 2! Hes over the 100th percentile for both weight and height. (I think hes eating the carpet lol) He pretty much lives off Puffs, nuggets and french fries

My name is Erica Miller, I am writing you regarding my 27 month old little boy, Grayson. He reached all of his milestones very early until he was a year old. He spoke many words and did not have any unrealistic phobias. His ears were tubed the first time at 9 months because of chronic "sinus problems". At around one year old, he had a very bad sinus infection including a red, raw throat. Shortly after he began doing what we called "the fire-starter"/ thinking it was a just a phase. He would hold his breath, grind his teeth and make a humming noise. When he did begin to walk, at 16 mos, he was a toe- walker.He also has pretty severe texture issues with food. He will only eat dry foods. We saw a neuro-specialist as advised by our pediatrician, to have him checked for Cerebral Palsy. The Dr told us that what he saw at that visit were definite ocd characteristics but he didnt observe anything else. Grayson continued to regress in his language skills and now has 2 words. He cannot go to daycare or even a busy playground. He only stares at the other kids and does a "ski-jump" motion while grinding his teeth and humming. At home he is much calmer, most of the time. We recently changed pediatricians. His new doc saw him last month. He is also starting with a psychiatrist and speech therapist at the Autism and Spectrum Disorder Clinic. At his last appt he had yet another perrianal rash and a red throat.He has had a raw throat at every appt I can remember. His new Ped suggested a Strep Test. It was positive. After looking through Graysons very thick medical history he was curios why this was his first strep test, as was I. We were given Cephalexin and Diflucan to treat the infection. After 2 days I had a new little boy. He was a totally different child. He still had issues but the improvement was quite obvious. He could sit still and focus, even try to talk more. He was still hyper though much much less. After the first week he stopped improving. Within a few days we were back to where we had started. We returned to his Dr. and after explaining the whole situation he suggested blood work for antibodies and gave us Clindamyacin. He told me to go home and research Pandas. His Dr is also the founder and head of our local Autism clinic in Dothan AL. I do not have the blood results yet but alot of what I have read is the very definition of Grayson. I would like some opinions of parents who have children with the condition. Does my son sound like he may have pandas? All this time we figured he was possibly Autistic but I saw alot of red flags today. I also realize he could be Autstic as well or that it may be a result. Hes just begun therapy so we really do not have a firm diagnosis of Autism, Gray lacks alot of the key symptoms. His eye contact is great, he does not get lost in his own world, only his tics. His fine motor skills are good as well. Hes also a bad nail biter lately, but only since his latest infection. Hes very affectionate but seems frustrated often. Thank you for reading our story and I look forward to hearing from you! Erica and Grayson Miller ericaandgrayson@gmail.co

My 2 year old little possibly has Pandas. I will know more when we get the blood work back. He may have had it for almost a year untreated. I was wondering if any of your children were diagnosed as being possibly Autistic before you got to the root of the problem? Also, Id like to introduce us to everyone. Im Erica and my little boy is Grayson. We live in South Alabama. Hello to everyone and we wish the best for all of your families. Thanks!- erica