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Everything posted by NMom

  1. Would love opinions about a few things that may/may not add up to something. My DS (12) had a tonsillectomy about five weeks ago. He had a great recovery and no big post op flare. Over the last two weeks, he has developed two pretty major tics. He had three nighttime accidents in a row (not entirely unusual but he hadn't had one in a long time) and then has been fine. Then this week,he had two daytime incidents of incontinence. I took him to be tested today for a UTI and there was a small amount of protein in his urine but the test was negative for infection. They tested his glucose and it wa
  2. We see him on Tuesday and the initial appointment is two hours long and expensive. I'd like some insight into what the appt is like. My son was diagnosed on 2010 and is currently seeing Dr. Rao but it would be nice to have a doctor in Houston. Please PM me to share your experience with Dr. Doctor.
  3. Thanks to everyone who responded. The X-ray today did show a large amount of stool in his intestine so he is definitely constipated. The doctor suggested a cleanse that is very popular with ped. gastro in our area. I agree though that this is not normal and certainly can't continue. I am going to look into the digestive enzymes. It may also be time to consider Lyme treatment. I hate to admit it but I've just been brushing that aside because he's done so well, there are no LLMD's in TX that I know of (we are in Houston) and I hate putting this poor kid through anything else. I think we had a
  4. First..thank you to everyone out here who continues to post and respond to issues. I don't post often but do watch the forum and often find answers to my questions. A little bit of backstory: my son (now 9) was diagnosed with PANDAS at 6 years of age. He had severe and sudden OCD after a strep infection as well as tics. He's been on Augmentin since June of 2010 and responded very well. We also did extensive ERP therapy and continue to use that during the small upticks that occur whenever he is getting sick. He has had a positive Lyme test (IGENEX) and a negative Lyme (Dr. . We chose not
  5. I should have clarified that the original prescription is not through him. When I saw Dr. B in December we still had six months on a year prescription from another doctor. Dr. B did a bunch of labs and agreed that this was the right antibiotic...I just didn't think to ask him to extend our prescription. Not sure if he will do it now based on our labs from Dec...but I'll make an appt for a phone consult and try.
  6. We saw Dr. B in December and I forgot to ask him for a refill on our antibiotics. I've tried emailing him using the address his receptionist gave me but got a very tense response from one of the nurses that they cannot respond via email...but that's how we were told to contact him if we had questions!! I'm wondering if we have the wrong email address (think it went to the infusion center but we have not done IVIG). Does anyone have an email address or alternate way to contact Dr. B?
  7. We did a 40 day steriod taper with my son who was seven last fall. He only weighed about 55 lbs and started out at 30 or 40 mg so I would agree that the first steriod taper for your son might have been dosed too low. In any case...my son definitely got worse before he got better. I would have stopped the steroids mid-course if I could have. He even had two 'roid rages' for lack of a better term and he's never been a kid who had rages. It wasn't until about day 15 that we saw a drastic difference. The last two weeks were like the pre-PANDAS days and it was wonderful. We did not have last
  8. Thank you for posting! I have an eight year old son who has been dealing with tics and OCD for almost two years now. Earlier this week he told me...'Mom, I just realized that I'm a boy with tics who still has a normal life.' Broke my heart...he just wants to be normal. I lie awake at night worrying about what his future looks like; will he got to college, will he get married or will he someday be a captive to this illness? It gives me hope to hear a story like yours. Thank you for sharing.
  9. I've been thinking the same thing - is there a point where we try to wean our son off antibiotics? Right now he's on a daily dose of 1000 mg Augmentin XR. I just increased to 1500 mg because we had a major uptick yesterday - not quite sure where that's headed. That's been our routine for almost two years now. We also treat with homeopathic remedies and our homeopath wants us to stop the antibiotics to let the remedies truly work...not sure I'm there yet. I have seen a major difference in terms of how often my son gets sick though. He typically would have several bouts of ear infections a
  10. My son has a similar story - fairly mild issues in comparison to some but big enough to affect his life. His initial onset (May 2010) started with tics but progressed quickly into OCD that quickly became overwhelming for all of us. In the process of confirming PANDAS, we started ERP therapy with a child pyschologist who specializes in OCD and ERP therapy. I'm a big believer in ERP now. When my son is in the middle of an exacerbation...the therapy is tough and not as helpful but he has developed skills that help him cope better. When he's stable there is still some residual OCD (has now mor
  11. My son has had two major episodes and both started in April/May (2010 & 2011) and ramped up through the summer. We had HORRIBLE summers and then started coming out of the episodes right about when school started. I know that both times he was exposed to strep but he's being exposed right now in school and it doesn't result in a major episode. So I'm wondering if the approach of summer and the stress that school puts on these kids at the end (even giving them the impression that they might be held back right up until the last report card) is too much for him. I think he gets very anxiou
  12. The babesia testing was done by Focus Diagnostics in CA but I cannot tell who did the Lyme testing. Dr B pulls his own labs and sends them out to various places for different testing but I just get one big report. My son was tested for babesia microti last year by IGENEX and was negative . Dr. B ran the test for babesia duncani but not for microti...duncani test was positive. I think these are just two different strains of babesia that produce similar symptoms . The report just showed 'absent' or 'present' for each Lyme band and all were absent except 66. His test last Aug thru IGENEX showed
  13. I have not posted here in awhile because we've been holding steady - not perfect but not terrible either. My son still has OCD issues and tics that seem to come and go - right now they are definitely here. But I watch the forum daily and always learn something new from the many of you that have been doing this longer than us. With that in mind...I'm hoping some of you can help me understand our latest test results. Just a bit of background: My son was diagnosed in 2010 and has had two major episodes - both during the summer. He was going to do PEX last fall but his Lyme test came bac
  14. sorry for the multiple responses...computer got stuck and I must have clicked post multiple times! One other thing I should add is that I would suggest having your child tested for Lyme. Steroids are not recommended for children with positive Lyme tests and it might be a useful data point. I definitely wish I'd had those results prior to starting steroids.
  15. I think the important thing to understand is what you are trying to accomplish with the steroids. We tried a longer course (almost 40 days)at about the same initial dosage for my son who weighed about 45 lbs at the time. The first 15 days were very bad...he had rages which has never been a PANDAS symptom for him. His anger, anxiety and OCD all got worse and he had some serious physical symptoms that worried us and his pediatrician. Then suddenly everything got better and the last part of the taper was great in terms of the PANDAS symptoms (physical issues were still a concern). However, i
  16. I think the important thing to understand is what you are trying to accomplish with the steroids. We tried a longer course (almost 40 days)at about the same initial dosage for my son who weighed about 45 lbs at the time. The first 15 days were very bad...he had rages which has never been a PANDAS symptom for him. His anger, anxiety and OCD all got worse and he had some serious physical symptoms that worried us and his pediatrician. Then suddenly everything got better and the last part of the taper was great in terms of the PANDAS symptoms (physical issues were still a concern). However, i
  17. My son was diagnosed 18 mo ago and he probably weighed around 45-50 lbs. We started on 1800 mgs of augmentin ES which is just the liquid form of XR. He now weighs around 59 lbs and regularly takes 1000mg daily of the pill form (augmentin xr) but I will push him up to treatment dose when I see issues cropping up....that's about 2000 mgs. There are certainly people who use higher doses ...these are regular treatment doses that our pediatrician would prescribe. Some people believe in high dose antibiotics .. Not sure what dosage that would be. Don't give up hope though. It does sometimes take s
  18. I think this is the same stress most of us feel every day. For me when I feel like I can't process all the information I take a break. I've learned that there is a big difference between doing nothing and standing still for a moment. I watch bad reality tv, drink a glass of wine, etc...whatever it takes for me to stop thinking about all this medical stuff for a few minutes. And I pray a lot. I think my mind keeps working in the background but a small 'break' sometimes gives me clarity...not that I suddenly know the right answer but it sometimes allows me enough distance to form a plan for
  19. I didn't realize you were there now! I hope all goes well. Call me when you can to catch up.
  20. We are also traveling to see Dr. B in December from the DC area. I would be interested to know what labs he orders prior to the visit. His nurse told me that he wouldn't order any until he saw my son. But if we could get them drawn before and have the results...it will make the visit much more informative. Would you let me know what labs Dr. B suggests you draw?
  21. I'm so happy to hear that your daughter is doing well! It's always great to hear good stories. We are embarking on the Lyme/co-infections route right now. I'd love to know who you take your daughter to see and if you like him/her? We live in Houston so will be traveling no matter where we go. Feel free to PM me. Thanks and I pray for continued improvement/success for your daughter.
  22. We are just beginning our journey into the world of Lyme...got our positive Lyme test a few weeks ago. We live in TX and as far as I know there are no LLMDS here. The upside of that is that we will have to travel so could go anywhere. It would be easiest to go to the east coast but not mandatory. I'd love some suggestions on LLMDs based on personal experience. Right now I'm leaning towards dr. Moorecroft in CT. Dr. jemsek in DC would be easier for me to get to but don't know anything about him. Please PM me if you have any thoughts...good or bad...on LLMDs. Thanks!
  23. Bees - Do you mind me asking what Dr. B's abx protocol is for your child? I'm considering heading to see him next as I think we need to do some more testing to understand what else might be lurking under the surface.
  24. If nothing else..the forum can be good for a laugh sometimes. Thanks PhillyPA! I needed a laugh today...and you make a good point.
  25. We definitely fall into the category of PANDAS plus co-infections. We have positive Lyme test and are still looking at other co-infections. And I have every intention of staying on this forum and on the Lyme forum because both have gotten me through some pretty rough patches. I've certainly been on the receiving end of a few heated and very strongly worded responses. I assume they are made with the best of intentions but they can sometimes be frightening. I try to take them with a grain of salt and remember that when I'm in crisis mode I tend to be pretty intense as well. More times than
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