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Everything posted by makeitfromscratchmom

  1. Most definitely get him tested for strep and not just the in office one but the one they send out. If the other kids had strep he probably did too but it looks different. My son when through having untreated strep and then we found out six months later when my daughter was diagnosed with PANDAS that he too had it and was having very similar symptoms to what you are describing. He was diagnosed PANDAS and we had to figure out the best antibiotics for him. Not all worked the same. We also had changes in school, etc that I thought was the reason but it was in fact strep that is still in the system even without strep symptoms. I hope this helps.
  2. I have two kids with Pandas that were diagnosed 9 years ago by Dr. L. Both have very different cases and symptoms. My son (who was 5 at the time) sounds just like yours with symptoms. He also has a Lyme co-infection found later. No OCD symptoms at all but a lot of aggressive behaviour , lashing out and definitely anxiety. We couldn't get him out of the car or into school for quite a while. He definitely had strep with titers and strep test confirmed it and was caused it at the time of PANDAS. Yes you can have PANDAS without OCD. Both my kids are doing pretty well now. It was a couple of very rough years but now manageable. Good luck. Feel free to contact me if you would like.
  3. I totally agree with bobh. My kids were lucky to find doctor L in Washington DC to diagnose them both as having PANDAS (very different symptoms though) and when she put both of them on steroids there was an immediate difference. That noted, if you noticed a difference in your symptoms your OCD and other symptoms it would appear to be biologically based... My kids also had very similar symptoms that you mention. We have never done the Cunningham panel but have worked with first D. L with antiobiotics and then moved on to a wonderful naturopathic doctor, using supplements, Low dose naltrexone, and other things to bring both kids symptoms way down. We also found borrelia Lyme in both kids and mycoplasma with my daughter and have worked with those areas too. My daughter also had her tonsils and adenoids out and it also helped significantly. She had a number of OCD issues that are still there but not nearly as significant as they used to be. She still has the sensory issues but her handwashing has almost totally gone. My kids were diagnosed six years ago and are still have their moments but it is under control and they are able to function quite well despite some very bad years. I am not sure where you are from or your language, but there are many support groups on Facebook in different countries and states in the US. I am currently in Europe if you need help there. You are a strong man and you will overcome this. There are lots of people out there to support you like on this forum. We all want to help.
  4. We were living in Washington DC when my kids were diagnosed about 8 years ago. Dr. Latimer was our doctor and we were lucky enough to find her since she was one of three at the time. She is a neurologist. PANDAS/PANS is not mainstream enough yet. You will have to go with the doctor's who know and treat PANDAS. She didn't really help in a neurological doctor kind of way but as looking at the big picture. I found the holistic approach worked much better for us after her suggestions of IVIG, which we didn't do, and tonsils/adenoids out (think it helped). We were able to get my kids off of antibiotics after a couple of years and do naturopathic and supplements that worked great with Dr. Derksen. I would just give her a call and talk to see if she is a good fit for you. She is very well connected worldwide and in Seattle. She is constantly learning new things and takes the time 1-2 hours to really figure out the problems, which may also be Lyme co-existing with my son.
  5. I am no longer in Seattle, left almost two years ago, but we went to see Dr. Amy Derksen at https://www.holistichealingarts.org/ She is very knowledgeable about PANDAS/PANS and we were with her for more than 3 years and had great success. If you want more from me just let me know. Both of my kinds have PANDAS and had very different symptoms but many of those you describe. Good luck and you will see results. I know it is hard now but we have done quite well with my two and they are now 13 and 14 and almost appear normal, although they do have their moments. Hugs from another Mama
  6. I know Dr. Klinghardt has office in the UK I am not sure where. Call his Seattle office and I know they can definitely refer you to someone in the UK. We just moved to Europe from the US and my doctor told me that he has office in the UK that we could consult with. Here is his website. www.klinghardtacademy.com/ Good luck.
  7. Go see Dr. Amy Derksen with Holistic Healing Arts www.holistichealingarts.org. She worked under Dr. Klinghardt. She specializes in lyme and other hard to find/treat cases. Our whole family has gone to her and she is excellent. We moved to Europe this summer but we will still see her. Good luck.
  8. I also have a blog. Check it out. Looking or anything in particular? http://makeitfromscratchmom.wordpress.com/
  9. We are also in Northern Virginia and new to PANDAS (last fall). We have been seeing Dr. Latimer, who it seems is THE person to see around here. I haven't really found anyone else but have tried. Dr. Latimer has been wonderful for us but is very hard to get into see. Make the appointment. You can always cancel later. Our pediatric office, which we are new to, has a physicians assistant that we see who is familiar with PANDAS. She had a couple of cases in her old practice. She has been very supportive and has given us all the antibiotics we've wanted. I'm not sure she would be comfortable with diagnosis though. That is the tricky part of all of this I think. We are thinking my son has PANDAS now also, but not the obvious symptoms or the same symptoms as my daughter. Dr. Latimer has had us also put him on the antibiotics through the end of the school year to see if it helps. I'd be happy to talk with you over the phone or by e-mail if you want more information.
  10. My daughter was originally diagnosed with PANDAS in September by Dr. L (probably have had it for a few years) and when we had a fever/ infection in December went back and she diagnosed Sydenham's Chorea. The doctor says we pretty much treat them the same (close cousins in disease) and often look the same, antibiotics until she's 18 or so. My daughter's chorea has been around for a few years, nothing overly obvious but visible when you really take a look at her movements and how she sits still (never), etc. Her PANDAS symptoms and chorea spike whenever she gets sick and December's chorea was the worst we have seen in years. I would be happy to talk offsite and compare notes. Dr. L did tell me that it would be easier insurance-wise getting treatment for Sydenhams. Good luck!
  11. My daughter was diagnosed just over a month ago by Dr. Latimer and she has been on Augmenton XR but got sick earlier this week and we are are now also diagnosed with sydenham's chorea. We are going to do three weeks of steroids along with 10 days of clindamycin to get rid of the strep we cultured for this week. I was wanting to go more natural once we start stablizing. I had heard of Olive Oil as well as Oregano Oil. What are your doses (times per day, drops) for the Olive Oil and are you doing any other supplements or natural remedies?
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