Guest pandas16 Posted November 12, 2011 Report Posted November 12, 2011 Is anyone here considering it?
kimballot Posted November 12, 2011 Report Posted November 12, 2011 On 11/12/2011 at 8:03 AM, pandas16 said: If there is a connection between the brain and the gut and these problems are infection triggered....and antibiotics destroy the gut....does this not seem like a really vicious cycle......something has got to give in order to get stronger again... Yes - it does seem like a vicious cycle and it can be a vicious cycle. We need to support the gut right from the start of antibiotics and I think we are all learning about supplements and diets to help. I just wish we had a way to measure "gut health" like we measure titers.
dcmom Posted November 12, 2011 Report Posted November 12, 2011 pandas 16- I don't know anything about DBS. I do agree with you about the antibiotics though.. Our experience with our girls has been they present very much like what Dr Swedo describes. I don't think that chronic infection is an issue for them. They get an infection, or immune trigger, and for whatever reason it sometimes triggers the autoimmune response of pandas. The illness resolves, but we are left with the autoimmunity. We find antibiotics less important- other than swiftly and aggressively treating the illness- and immune dampening the key (for us). Both of my girls had strep in the spring. We knew immediately, and treated them with a course of clindamycin, and then a round of IV steroids. This made all the difference for them. Over the summer I took them off of everything (except vit D, probiotics and melatonin)- no antibiotics. I started to become very concerned about the unintended consequences of so many antibiotics- and if they were really necessary. They did fine. It made no difference. For the school year they are on prophylactic zith 2x week. To be honest, I am thinking of stopping this, but I am a little chicken. If I see any pandas symptoms pop up (which I have a couple times in both), we give them full strength antibiotics and regular motrin dosing for 5 days. So far, since July, they have been really well. There is some ocd/anxiety- they are not like pandas never entered our lives- but I would put them at better than 90%. My realistic goal is to keep them at at least 90%, 90% of the time. This gives them great quality of life. Of course I am afraid to wake up every morning- fear that things go bad- PTSD I am trying. They are happy! The reality is- I cannot keep them from getting sick. I think I just need to be able to respond quickly and aggressively, if they have an infection, or an increase in symptoms. I wish I could find a ped to work with me.
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