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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 was 99. The nurse didn't really react but also didn't say that was within normal range. She just suggested that we check it again whenever he has bloodwork next time. My gut says something is going on but I'm not sure what. Flare? Growth spurt? Some new and terrible diagnosis that is going to rock our world? I may have a little PANDAS PTSD so am looking for anyone with a level head here that might have seen these symptoms before. It feels like something but I'm not sure what.
  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 positive Bartonella test at one point as well but then it was negative later so we moved on. He's also had a very high myco lab but no related symptoms during that time. I will also post on Lyme forum. Thanks again to everyone that responded.
  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 to focus on treating Lyme specifically because he has done so well on the Augmentin. But I mention it now in case maybe it has some bearing on our newest problem. For about the past six months he has had these horrible stomachaches. They were happening about every 3-4 months. He usually wakes up in the middle of the night and is in intense pain. He's shaking, crying and in one case threw up. Then he rushes to the bathroom, has a bowel movement and starts feeling better. Within about a half hour...he's perfectly fine. This has started happening more often although not as intensely. I've taken him to the pediatrician (not a PANDAS believer but at least he doesn't argue with me about it anymore!) and he believes it's constipation - Xrays indicated that as well. It's scary as ###### when it happens though. I've been on the verge of taking him to the ER more than once but it always resolves itself right after he uses the bathroom. I've got him on a priobiotic (Primal Defense) as well as Miralax every day but it continues to happen. Has anyone else had this issue? My biggest fear is that the Augmentin is damaging his stomach somehow and we are just brushing it off as constipation. Am taking him back to the pediatrician today and would appreciate the benefit of anyone else's experience. Any thought about what we should be looking for?
  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 lasting results and had several fairly serious medical complications with the steroids so probably won't do again unless absolutely necessary but there are others on the forum that do get wonderful, lasting results from steroids...praying that is the case for your son.
  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 and strep in the course of a year - so far we've had some minor upticks and one major episode after diagnosis - so I'm inclined to keep him on for now.
  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 morphed into intrusive thoughts)and the ERP therapy gives him the tools to deal with it much more effectively. Our doctor is also great at identifying when something is a tic vs OCD. Some of what we thought was OCD intrusive thoughts is actually tied to a tic. She can reassure him in a way that I can't and sometimes he relaxes just because she tells him something he's worried abotu his normal. And sometimes I go to her by myself for advice on how to cope when the OCD is not responding. She was not a believer in PANDAS but she is now! My son just turned 8 and has been doing ERP since he was 6 1/2. I think it has empowered him to deal with his OCD more independently - as much as I'd just like it to all just go away I have to be realistic that it might not be that easy. And he's now able to tell when something is becoming an OCD issue and we start working on it right away. Last summer he told me that he felt the need to keep washing his hands. We had a phone consult with our doctor and developed some ERP 'homework' very quickly and it never took hold as a full OCD ritual. That in itself was worth all the time, money and energy we've spent on therapy.
  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 anxious when he does not have structure and maybe that causes the OCD to ramp up severely. Not sure and I haven't yet figured out how to head this off...but I'm already dreading April!
  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 positive for bands 41, 58 and 83-93 and band 39 was indeterminate. I had a consulte with a Lyme doctor last Sept who agreed that the test was positive but felt like my son was too young to use the more serious drugs and that the Augmentin he is already on should inadvertently treat the Lyme. The IGENEX tests also showed an equivocal result for b. burgdorferi which I know is also linked to Lyme....maybe I should start posting on the Lyme forum! Lastly...RNMom, you asked about the haemophilus influenza type b result...it was low. It looks like the test measures the level of protection one has to this infection....just based on the description in the lab report. I've been thinking that our next step was an LLMD for awhile but wanted these labs run first. Of course there is no one near us so guess I'll start looking at plane tickets again.
  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 back positive and we were told not to do PEX. We tried steroids which worked but we had a lot of side effects and he immediatly got sick after stopping them and it all came right back. He's done very well since starting school but we still have an uptick in symptoms when he is exposed and he's constantly exposed in school. We use ERP therapy to deal with the OCD and ignore the tics for the most part as they typically seem to ramp up for a few weeks and then disappear. He's on a daily regimen of Augmentin XR. We decided to switch doctors this fall and went to see Dr. B in CT. He did extensive testing and I just received the results. He reviewed them on the phone with me before I had them in front of me and said all looked good - no co-infections including a negative Lyme test. He now runs these tests in his own lab (vs IGENEX) but said that his tests have the same level of sensitivity as IGENEX. It does look like he covered all the Lyme bands (vs just the few that the CDC test covers). But there were a few other abnormalities in the tests that he didn't mention on the phone. So here are my questions: * Has anyone else had a high BUN/Creatinine Ratio? It appears to be an indication of kidney function and both of the individual results are within the normal range but the ratio is very high. * There was a test called the Anti-Streptolysin O Screen reflex titer and it just says Positive...what is that? It's not the ASO titer - that's on another line. It was also high but that's not surprising. * The only Lyme band that came back as positive was IGM p66. Is that a significant band? The test has it starred and says the test must have 2 bands exclusive of the starred bands to be positive. Can Lyme 'disappear' on the test if it has been treated? * The Haemophilus Influenza Type B AB, IgG came back as out of range. What does that indicates? * C1q, serum was out of range. No idea what that is? * WA1 Antibody detected. Test says this is Babesia duncani which I think is linked to Lyme? The back page of results was a summary of the abnormal results but only listed some of these items...did not mention the C1q or the Wa1 test. Any insight is much appreciated. I think I'm going to schedule another phone consult with Dr. B to review these results but I'd like to be armed with the right questions first!
  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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