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NMom

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NMom last won the day on April 16 2016

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About NMom

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  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. Hi, I am from Texas too. We live southeast of San Antonio. Which doctors do you use?

    1. NMom

      NMom

      I'm sorry for not responding sooner. I just saw your comment for some reason. I live in Houston and am currently traveling to see Dr Rai in Dallas. Who do you see?

  4. 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
  5. 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
  6. 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.
  7. 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?
  8. 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
  9. 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.
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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.
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