sww817 Posted December 5, 2009 Report Share Posted December 5, 2009 I don't have much to add that others have not already said. I would just say that I think it is a good thing that you are working with one of the doctors that understands PANDAS. It definitely sounds like it fits the profile. My son regressed before he turned two and we have chased a lot of diagnosis. He did not regress to the point that they could fit him into any of the profiles, but they / we tried. I think we are finally on track with PANDAS. How did you choose Dr. K. I think he is good. I am not saying otherwise. But I wonder if Dr. L or Dr. T would have any more insight into a situation like this. Since they are both neurologists by training. Anyone else have any insight??? Link to comment Share on other sites More sharing options...
laura s Posted December 5, 2009 Author Report Share Posted December 5, 2009 Thank you all for great questions. I will look back to see if he or anyone else had strep when Jeremy started his Rages/OCD. I have 3 younger children who I should get swabbed. Dr. K wrote the script. I found him after googling and found this group. I live close to Chicago. I didn't pick up on the other dr's names but I will go anywhere and try anyone who can help my son. Thank you! Laura Link to comment Share on other sites More sharing options...
Buster Posted December 5, 2009 Report Share Posted December 5, 2009 Hi Laura...I'm going to be the devil's advocate and question the appropriateness of a steroid burst w/out concurrently being on anti-biotics. I would strongly recommend against using a steroid burst unless the child is clear of a harmful bacteria like GABHS. Steroids work by suppressng the immune system response. This means that if the child has GABHS, it is even more likely that the bacteria will grow without check. If it is PANDAS and in particular if you are in an exacerbation, ensure there isn't strep first. Buster Link to comment Share on other sites More sharing options...
peglem Posted December 5, 2009 Report Share Posted December 5, 2009 I just realized that we refer to the "PANDAS Doctors" by one letter names on here! I totally see the whole name when I read that! Sorry Laura, glad you mentioned it! Dr. L=Dr. Beth Latimer in Bethesda, Maryland. Dr. T= Trifiletti in New Jersey. Here's a post where he introduces himself to the forum: http://www.latitudes.org/forums/index.php?...mp;hl=greetings Link to comment Share on other sites More sharing options...
matis_mom Posted December 5, 2009 Report Share Posted December 5, 2009 I have 3 younger children who I should get swabbed. Don't forget to check mom and dad too! Link to comment Share on other sites More sharing options...
sf_mom Posted December 5, 2009 Report Share Posted December 5, 2009 Laura, I would stick with Dr. K...... he has worked with many 'AUTISTIC' children. In fact, he recently treated my friends son who appears to have 'Asperger’s' when actually he had Rheumatic Fever in November of 2007. He thinks he'll be able to reverse course completely with him. It will take time, it may take more than one IVIG treatment but Adrian should get better. He also did the steroid burst with him without prior antibiotics (5 days) and there was complete reversal of symptoms. Short lived because the steroids do wear off in about 2 weeks. He is now one week post IVIG and on antibiotics.......... my friend said he is already smiling and laughing like she hasn't seen in years. Wishing you all the best. -Wendy Thank you all for great questions. I will look back to see if he or anyone else had strep when Jeremy started his Rages/OCD. I have 3 younger children who I should get swabbed. Dr. K wrote the script. I found him after googling and found this group. I live close to Chicago. I didn't pick up on the other dr's names but I will go anywhere and try anyone who can help my son. Thank you! Laura Link to comment Share on other sites More sharing options...
laura s Posted December 5, 2009 Author Report Share Posted December 5, 2009 Is that why he is worse than before we started the steroids? He was on antibiotics for 3 days Azithromax 250mg by his primary care physician for serious case of eczema. Then we went to see Dr. K, he said stop the Azithromax and do steroid burst for 5 days, then wait a week to update him. It has been 5 days since we stopped the steroid burst. He is raging more, sleeping less, very intense, clawing at his skin and his school even called to see why the sudden changes... what happened? He is just a mess this week, so disruptive and scary I kept him home from school today. Laura Link to comment Share on other sites More sharing options...
peglem Posted December 5, 2009 Report Share Posted December 5, 2009 Laura, please go have a strep test done....if its positive you'll get abx and that could help. Link to comment Share on other sites More sharing options...
sww817 Posted December 5, 2009 Report Share Posted December 5, 2009 I am really confused why Dr. K stopped the Azith? Not that I am saying he should not have... just curious why??? I think these short courses of antibiotics actually work against us in some cases. Making the strep harder and more resistant to fight. I would be curious to hear if he gives you the reasoning behind it. Link to comment Share on other sites More sharing options...
sww817 Posted December 5, 2009 Report Share Posted December 5, 2009 Oh and I wanted to add that I would probably stick with Dr. K since you are nearby. But if you wanted a second opinion, Dr. T is on this board and has encouraged people to contact him with questions. People have said good things about him as well. We are working with Dr. L who I highly respect as well, but she has been harder to get in touch with. Link to comment Share on other sites More sharing options...
thereishope Posted December 5, 2009 Report Share Posted December 5, 2009 I'm confused too why he stopped the antibiotics. Is that why he is worse than before we started the steroids? He was on antibiotics for 3 days Azithromax 250mg by his primary care physician for serious case of eczema. Then we went to see Dr. K, he said stop the Azithromax and do steroid burst for 5 days, then wait a week to update him. It has been 5 days since we stopped the steroid burst. He is raging more, sleeping less, very intense, clawing at his skin and his school even called to see why the sudden changes... what happened? He is just a mess this week, so disruptive and scary I kept him home from school today. Laura Link to comment Share on other sites More sharing options...
Iowadawn Posted December 5, 2009 Report Share Posted December 5, 2009 Hi Laura...I'm going to be the devil's advocate and question the appropriateness of a steroid burst w/out concurrently being on anti-biotics. I would strongly recommend against using a steroid burst unless the child is clear of a harmful bacteria like GABHS. Steroids work by suppressng the immune system response. This means that if the child has GABHS, it is even more likely that the bacteria will grow without check. If it is PANDAS and in particular if you are in an exacerbation, ensure there isn't strep first. Buster Hmmm. Maybe that is why the steroid burst wasn't all that conclusive with my son---we hadn't gotten the strep eradicated at the time of the steroid burst with Dr. K. He went into the IVIG without being cleared of active strep-based on titers that were up & down (really high & higher) along w/behavior. We requested to Dr. K that Evan be placed on high dose abx after the IVIG after hearing of some successes with this. I was afraid we couldn't get the strep and boost the immune system with IVIG and a prophylactic dose of Augmentin. He agreed. He has given us 3 mo of 875 2x/day. We are 9 weeks out & seeing progress! I really wonder how accurate an indicator a steroid burst (5 day) is in these "chronic cases. Just some thoughts. Dawn Link to comment Share on other sites More sharing options...
peglem Posted December 5, 2009 Report Share Posted December 5, 2009 We did a 5 day prednisone at the end of September, while on Keflex. I think my daughter was a carrier at the time. We saw improvement on the first 3 days, but she started getting sick on the 4th and 5th days and was definitely sick when we went off of them. Link to comment Share on other sites More sharing options...
sww817 Posted December 5, 2009 Report Share Posted December 5, 2009 Laura- I just wanted to add that we are in the same boat with the yeast issues. That it is why it is important to stick with a doctor that understands PANDAS. The yeast is a problem, but the strep is a bigger problem and I think they all affect each other. So we are trying to deal with the strep and then will try to deal with the yeast more after we get this under control. I also think that after we get or strep under control, we may still have some issues that remain, like true anxiety. But I know that the strep / PANDAS definitely dramatically worsens all issues. So don't give up on eradicating the strep for fear of the yeast. Link to comment Share on other sites More sharing options...
PatAnne Posted December 5, 2009 Report Share Posted December 5, 2009 These involuntary movements can absolutely be related to seroquel! Please revisit this with your doctor as this can become permanant. Good luck, PatAnne When he was 1 year old he had strep 2x per throat culture and put on antibiotics for 1 week course. He was sick a lot his first year of life. Then he regressed, stop talking and interacting and was diagnosed and labeled "autistic" at 20 months old. The titers and lyme tests were just part of a DAN workup 3 years ago but nobody put him on any medications for the high titers. Ibuprofen is our life saver. He is also on Seroquel for sleep 100mg and Prozac 5mg in am. We have tried every "autism" treatment possible. The ocd just has taken over. I can no longer call it a stim like I did for years. Yes, he also now has involuntary movements - jerks, flinches, grunts, tightens up. These are really bad right now. He can't even walk without jerking and stiffening. I thought it was that td (tardive...??) from the Seroquel but the doctor doesn't think so. Dr. K has not put him on antibiotics yet. We just did the steroid burst last week. (no positive changes yet) Thank you for your thoughts and input. Laura Link to comment Share on other sites More sharing options...
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