Claire Posted May 12, 2004 Report Share Posted May 12, 2004 Hi Kathy, i had the same reaction as Heather did to the 5 years of antibiotics. Ronnas son had PANDAS (and Syd. chorea) and she was doing antibiotics with him for a long time and it created what she and her naturopath believed were yeast problems. So she stopped the antibiotics and eliminated some foods she found out he was sensitive to and treated for yeast and he is much much improved. I do see that you need to take a course of antibiotics for the strep. My son had fears during strep which got me to research PANDAS. The fears improved greatly with a round of antibiotics to get rid of the strep--it was necessary to do this! But I think the antibiotics may also have worsened his yeast issues. Like Heather, I am treating him for both metals and yeast now and avoiding certain foods. I am not a doctor but I read a ton of studies that beyond treating the strep, the prophylactic use of antibiotics was not effective. Here is a link with a ton of studies http://www.neurotransmitter.net/pandas.html I agree with Heather that testing for heavy metal toxicity (e.g. mercury), yeast would be important. Also food sensitivities. They are all more related than I ever realized--many of us notice positive behavior changes with elimination of certain foods. Sheila Rogers, the site editor, has listed some doctors above who do this testing, if you don't have ones that you know can give you input. Claire Link to comment Share on other sites More sharing options...
Guest Guest_efgh Posted May 12, 2004 Report Share Posted May 12, 2004 Hi Kathy Welcome and goodluck . Please read all the posts here and they will do a LOT of good to you. When you said your son has been sick since birth, can you please tell us what symptoms or problems he has been suffering from since birth? did your son get a lot of strep isssues that your doctor suspects pandas? goodluck and keep in touch. Link to comment Share on other sites More sharing options...
Guest Kathy Posted May 17, 2004 Report Share Posted May 17, 2004 Hi Heather, My son was born by emergency C-Section. I had a prolapsed cord. His lungs collapsed and he was put on a respirator. He was on the respirator for a week and then oxygen for two weeks. Actually there were no effects from that. At 11 months old he got the RSV virus. He was in the hospital a week with that in an oxygen cover. He developed Reactive Airway Disease which is like Asthsma. Over the years he has been on steroids and various antibiotics. He occassionally uses an inhaler if needed. I can't understand how his Strep went undiagnosed as I take him to the Dr. whenever he is sick. The Neurologist explained everything to us but he says they really don't know what the link is. He said everyday they are researching it. I hate him being on antiboitics for so long but if he gets strep again I have to worry about heart valve trouble. I don't know what is best. My son is 10. He was watching a video of his band concert from the other night and he said to me "look at me with the stupid tic". I don't think alot of people notice other then us because we look for it. I just hope it goes away. He has not other problems like OCD or ADHD. Just the tic. Thanks for responding. I will read the other post and see what I find. Kathy Link to comment Share on other sites More sharing options...
Guest Guest_linda Posted May 17, 2004 Report Share Posted May 17, 2004 Hi! I am delighted to find this site on PANDAS it seems to be alot more active than others. A little background I have two boys who my ped. has dx PANDAS and they are doing OK. They have been on the penvk since September and still tic but I feel alot of the ocd and anxiety has improved with the antibiotics. From reading this site I do want to look into the yeast connection. Talking to the NIH last month they are compiling the information regarding the penvk vs. azith. study and should have the results soon out soon. I am hoping these results will be encouraging because I don't like keeping my kids on these antibiotics. They also said they were reaching out to the children who originally were dx with PANDAS years ago to see how they are doing. I am a little surprised that they haven't kept in touch with these chidren to see how they are doing before now. Thanks for all the great information. Linda Link to comment Share on other sites More sharing options...
Ronnas Posted May 18, 2004 Report Share Posted May 18, 2004 I have not had a lot of time to post lately. I just thought I would mention that we had my son on prophylactic antibiotics for well over a year as this was the recommendation by our infectious diseases doctor and our pediatrician. The following is just based on my own expereinces and research and please don't take it as advice for what to do for your own child... We have chosen not to keep Kurt on prophyactic antibiotics because I think it has contibuted to a yeast problem with Kurt and food intolerances. I am unconvinced that the prophylacitc antibiotics can actually prevent a strep occurence. The only study done in connection to rheumatic fever and prophylactic antibiotics (that I can find) was done in the 60's and is a very poor study. What we do is: 1. Practice very good handwashing. (home and school) 2. Absolutely promptly at any sign of a upper respiratory infection, cold, sore throat, runny nose, sniffle, etc for anyone in our family I get a throat swab done. 3. If Kurt is postive for strep (hasn't happened yet) or one of the kids is postitive for strep (this happened not to long ago with my younger son) then I put Kurt on antibiotics also (10 days) and I watched my younger daughter closely for symptoms. Anyways, I guess from my experience I would encourage everyone to weigh the pro's and cons of prophylactic antibiotics and to really talk to their doctors and to the NIMH in regards to what they recommend. Kurt has been off antibiotics for 5 months and he has done fine. We have concentrated much more on building his immune system and he is doing far better than I could have imagined a year ago. Believe me I DEMANDED prophylactic antibiotics at one time for my son only to realize later that it was not really the answer for us. I read more and more parents online talking about prophylactic antibiotics and I guess I would just want to say that from everything I have read and learned over the last year there are side effects and consequences to choosing antibiotics. This is just my experience and everyone very much needs to follow their own gut feelings. Although I still have my "down" days with time so much of this is just so much easier to deal with. I would say beyond antibiotics etc... time is a great healer. Take Care, Ronna Link to comment Share on other sites More sharing options...
Ronnas Posted May 18, 2004 Report Share Posted May 18, 2004 PS. I just thought I would add that the probiotic we use is HMF Replete. My recommendation would be to avoid any probiotic with streptococcus thermophilus in it. Ronna Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now