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Everything posted by T_Mom

  1. Browneyes Mom I am so sorry--sounds like a most difficult time. I know our previous steroid burst was 5 days at 40mg, then 2 days at 30mg, 2 days at 10, and 2 days at 5mg. Prednisone. She is 11. You are in our thoughts-- T.Mom
  2. "Has anyone else had those results that there symptoms remained improved after the burst? Although she did mention her tics and symptoms were flaired up at first." Hi Michele, My daughter had a steroid burst this summer and then was essentially symptom-free for about 8 weeks--until OCD symptoms hit again when she got a cold. I too would be interested in knowing if anyone had long-term effects with steroid burst for "Pandas"... T.Mom
  3. Yes, BEMom--this forum continues to be a support and blessing. I just sent you a PM re: the steroid burst dosing we have been given for our daughter. Ours was for Prednisone -- I assume yours is Prednisone? (It is higher than what we were given.) Best, T.Mom
  4. Re: Two antibiotics and the effect... ...He readily changed the antibiotic from Amoxicillin to Augmentin this last time when I mentioned that I understood a lot of people were having success with Augmentin - we had just used Amoxicillin and he wanted to do that plus Azithromycin, so he did that with Augmentin instead. Hi BrownEMom-- So right now your d is on two antibiotics? Amox and Augmentin? Can you tell us the dose of each and for how long is the prescription? (how much does your daughter weigh?) I have not heard of two being done at the same time-- I can say that one doctor we saw earlier was not willing to prescribe Azithromycin even though the Amoxicillan my d. had been on had a very positive effect in calming OCD issues for our d. The doc. was not willing to try Azithromycin for 5 days with us when we wanted to switch to try it. Instead the doctor encouraged very intensive CBT and increase in SSRI. We just did not feel this was the track to try (yet) (were already doing CBT weekly and low SSRIs.) My daughter went on to continue with full strength Amoxicillan (1000mg/day) for the past 10weeks, and every week we have seen a continuing significant improvement. After 10 weeks her personality is more apparent than it has been for 3 months. The CBT therapist (weekly) actually told us she did not think she needed to see our d. anymore -- 2 weeks ago. That was good news -- for now. She is certainly not 100% yet...and the OCD is still there, but she is much, much better, right now. I would not have thought to continue the Amox. longer if it were not for EAMom--Thankfully. and I am thankful for the good advice/support from all on this forum-- T.Mom
  5. Thanks Amy-- I agree an eye appointment is in order. In some ways I think the first sign of PANDAs/Pitand should be the PUPILS! best-- T.
  6. This is a long shot -- but our dd is recently reporting she cannot see things at a distance. This well could be a familial near-sightedness showing up, but I was just wondering if others have had a similar need for glasses... I realize the difficulty with this as of course many children need glasses--I am just wondering if it could be related? Her pupils have been noticeably very large through out the year (at least five doctors in the past 14 months have said not to worry about this...) They were first huge with the initial onset of anorexia setting in and continue to indicate when she is "having a hard time".
  7. Amy--Great answers all. Very helpful. To add to the variability of symptoms/reactions:... in my daughter's case she with two exacerbations she responded remarkably well to "full strength" Amoxicillan (500mg 2xs a day for 10 days.) Within 24 to 48 hours. Virtually 100% clear until she caught another cold... She also had a remarkable clearing with either the Steroid Burst or Amox.--was on both at the time. Re: doctors. It comes down to finding someone who is able and willing to provide the support necessary. They need to know the issues, or at least be willing to consult with someone who does. Prior clinical experience with PANDAS/PITAND children helps. I think the psych. and CBT can provide support, physical issues have been key in our own experience. Amy's suggestion on the binder of information, records, etc. is key to understanding the course and documenting your experience. Best, T.Mom
  8. Dear Desperate Mom-- I am so sorry, this sounds like a terrible experience. You said: "Over the past week his symptoms have got worse. He still licks his face and rolls his eyes every minute and now his eyes seem to be getting stuck in the corner and he bends his neck all the way to the side. I called the nuroligst she said increase the Tenex to 1/2 mg twice a day. Yesterday he started bending his neck down all the way to his chest and moving his eye brows and today he started blurting out noises and jerking his body. Eye rolls and neck are at least 3 to 4 a min, tongue is constant and so is eye brow movement. He told me it feels like hes going to explode. I called the Nuroligist but she didnt get back to me because its the weekend I suppose. His pediatrician said we have to let the antibotics run its course." Has a doctor seen these more severe symptoms this week? It sounds like you tried to call the neurologist who has not returned your call (I am so sorry that happened--do they have an after hours emergency contact number? I would call it tonight and ask them for advice.) Explain the medications and the symptom changes, they need to know. Especially if you have not seen a doctor this week I would encourage you to contact a doctor immediately (on-call doctor at your pediatrician, a phone call at least tonight) to describe what you are experiencing. Whether or not this is PANDAs the doctor should know about the symptoms you are describing as there has been a change. I hope you have been able to be seen this week by someone--I cannot tell from your note, but I know this must be very scary. There is alot of information on this forum about the experience of families with PANDAs. Please keep us posted, I am so, sorry -- T.Mom
  9. I just want to echo that there seems to be a common parental understanding (from experience) that with a true PANDAS issue of inflammation, this IS a physical issue, it is not willful disobedience, nor is it kids not trying hard enough, etc. (...and often only after your child has gotten better do you fully realize the extent of that. ) How much easier would it have been if our dd could have "just tried" and it would have gone away... We had the same types of suggestions made by well meaning doctors/family/friends this year--psych. intake, intensive CBT, increase SSRIs, family counseling, doctor's asking if we were having marital problems...etc. etc. Thick skin is the name of the game -- and try to remain reality based! We also had one great insight which I want to share--during the worst time (lasted 3 weeks), crippling OCD, no speaking, holding saliva, eyes closed--and we are running to doctors all over. We wondered if she even knew what was going on around her all the time. Once dd "cleared" she could remember absolutely everything from that time period. We asked if she could remember what we said to her during that time. She said, "Yes, you said I was going through a hard time but that you were going to get me help." That was what we did say to her--a number of times, at the worst of times, when she was not herself, and she remembered. Best to All, continued prayers, T.Mom
  10. Hi Lisa, I am so sorry about your scary experience--We also had sudden onset OCD/tic issues, our experience (not to scare you) is that the first time around was "bad" the second time--worse (I did not think it could get worse.) Have you read Dr. K.s website info.? www.webpediatrics.com We did the steroid burst to flesh out if it might be PANDAS. This we did and it seemed to be a dramatic recovery. We are using an EPA to DHA split on the omega 3 oil of about 3 to 1...The EPA is actually the one which seems to have had a good effect on my own daughter. We are giving 2000 mg total (combined EPA/DHA) a day. (I know some people on the forum have chosen to get the Flax Omega as they felt the fish oil exacerbated the tics.) We also tried Amoxicillan and she cleared right away each time--then within 2 weeks of being off antibiotics she got sick again and the OCD tics came back. It seems important to clear it from their systems in my daughter's case...now on 7 weeks of Amoxicillan, full strength. Significant improvements with every week so far-- All the best to you--it is a journey but there is definite help along the way, you just have to keep playing with the cards to figure out what works for your child, T.Mom
  11. Amy--What a wonderful post to read. Thank you for sharing that news. Please keep us updated, it is very helpful-- I guess we wonder now about IVIG. Since our dd is now about 85% clear (of OCD) but it is lingering this time-- and she had two earlier incidents which were very severe, at what point does one decide enough is enough. Because our dd had such severe episodes, to be at 85% seems better than that certainly--she is walking and talking. --but she is not herself still, still struggling with some OCD, and internally struggling against the compulsions (stepping, rewriting, leaving test problems blank when she knows them, not saying something when she wants to, or not feeling like she is free to eat something.) Best, T.Mom
  12. Dear BrowneyesMom-- I cannot tell you how my own heart sank when I read your post--and I am sure I am not alone... I am so sorry you have been going through this trial. Hang in there-- The good news is that there is "some" information that holds potential for helping-- I suggest carefully reading Dr. K.'s site, and find a doctor as soon as possible (start calling offices if you have to) that has treated someone with PANDAS issues in the past...and then start looking for a second opinion if you need to. Our best helpers have been in the neurology field. Take the articles in with you, and be strong. You will not know conclusively until you see a reaction or two over time, at least that was our experience. After you have seen your child's OCD issues, etc. go away with antibiotics--well, it is hard to think otherwise. There is much useful information on this forum...and people with a great deal of insight and experience. T.Mom
  13. Yes, the effects of Amox. is an interesting point. What I am struggling with understanding is if my daughter's OCD has "cleared" a number of times with Amoxicillan, which may (as noted by Dr. Swedo in the video) have modulating effects on behaviors/neurotransmitter concentrations... Is there then reason to believe that regardless of this effect SHE MIGHT BENEFIT FROM IVIG ? -- or that the effect indicates she WOULD benefit??? -- since the kids who had an acute reaction were in the study? --does anyone know enough to know. T.Mom
  14. Thank you--Peggy Sue. I will watch the Q and A session-- I also found the following conference clip to be helpful. You may have already see it. http://media.mindinstitute.org/video/toxco..._toxconf_hi.wmv * Glutamate -- Any info.? Best, T.Mom
  15. Thank you EAMom, Yes, thanks to reading forum posts the switch to Azith. is on my list for the week ahead...Thank you! I agree the Amox. may never have truly cleared things--perhaps only suppressed. Interesting reflection on the Swedo session. I watched the hour long session but not the Q and A yet. Swedo noted the hep C issue, that is the only thing that really concerns me, and I have yet to wrap my mind around that...IVIG should be safer now, right? some 9+ years later...we would hope, I would like to see some stats. In our case it may not be strep (though we are now charting monthly titers to see any rise or fall...) it may be the "PITAND" issue. The symptoms are so "weirdly" similar to each other across these kids...and they CHANGE all the time... OCD over all: with our dd-- at one time (at least) guilt, incessant prayers, movements, fearing food might be poisoned, the whole written language issue, hand writing deterioration, huge pupils, step-stepping around things a certain way, mood lability...and the anorexia issue. We can point to the week these start and finish with each episode. I know I am not noting anything new to anyone reading this...it is just so darn frustrating. My Father encouraged me at one point that WE were the only ones who truly knew the entire situation with our dd -- all that she was encountering -- and knew the situation best to put the pieces together. Sobering. T.Mom
  16. Thank you very much Dedee-- It has truly helped me to be able to read this forum (though with a heavy heart.) Dr. Murphy's insights are hopeful. As we sort our way through the information--it helps to hear what others have found. Best-- T.Mom
  17. Hi EAMom, Are you doing Azith. half dose or "full" strength right now? Thanks--
  18. Greetings-- I am new to posting. Thank you one and all for the support this forum provides. Our daughter (11) has been struggling with what we believe is PANDAS/PITAND for a year. Sudden, severe OCD episodes started 11/07--First was two months of sudden onset anorexia/compulsive exercising (Nov/Dec) 07-08. Next one was very severe regressive OCD (July-Aug.08) holding of odd positions, eyes closed, no speaking, ETC (26 days.) Have seen numerous doctors, spoken with Dr. K, etc. We did a prednisone burst with the summer episode. We also started Amoxicillan (MRI indicated sinusitus), and started LOW level zoloft within a week of each other. 10- days AFTER the prednisone (but while on Amox. and zoloft) she "walked out of it", it was remarkable. But we then had 3 docs with 3 possible explanations-- She has had three bouts of sinus or cold illness this fall, each one coincided with OCD exacerbation (thankfully moderate.) Each time with full strength Amox. (500mg/2xs a day for 10 days) she "cleared"...until the fourth time in December... We continued on half strength Amox. and once we raised it to full strength again she could go to school. This time though, since late December the struggle is continuing. She is "functioning" though OCD is affecting her writing, stepping, thoughts, etc. No positive strep titers on the journey. OK--My burning question: What do we know about PANDAS kids "outgrowing" this? IS THERE ANY LITERATURE on this? Any references to help understand the course this takes after puberty? Thank you again, T.Mom
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